Hey at least I got around to posting about Halloween....

Better a week late than never, right? Right?

Here's 'Super Baby!' (In hindsight I should have dressed her as a monkey with a tutu and called her 'monkey princess' since that's Warren's nickname for her - don't ask. He'll just have to be willing to pay for the therapy.)


Batman was a little strong willed about wearing his treat bucket on his head. I have very few photos of him bucket-less, and, believe it or not, the one here is the only one where he isn't crying (a result of us trying to get him to take the bucket off his head for a picture). Anyhow, he was cute!



And here we have the 'Super Twins!'

Super DREW!


Super Nate!


SUPER TWINS!


These are their extremely EXCELLENT capes. The idea was stolen from my friend Deanne and the capes were sewn by Grandma. I would say that Grandma 'helped' me with the capes, but I'm not sure that by watching her sew them I was particularly helpful....


And here's our Rock Star!
Will started telling us that he wanted a mohawk several months ago. I told him that I would allow him to grow out his hair until Halloween and that we would shave and color it into a mohawk. He was SO EXCITED. Here he is getting his hair shaved.


And here is the finished result. His hair had gotten SO LONG!




And last, but not least, here is our Woopie cushion. Not bad for a kid who was in the ICU two days prior to Halloween!


We love Halloween (well, the boys more than Warren and I - parents just bear the brunt of sugar highs and kids who eat themselves sick). This turned into a great one. We kept it simple and it was fun.

A big bad adventure

Well, we are back from San Francisco. To say that this trip was a bit of a fiasco would be an understatement! The plan was to arrive Tuesday morning, meet with UCSF neuro-oncologists Tuesday afternoon, meet with the Radiation oncologist Wednesday morning, meet with the Pediatric endocrinologist Wednesday afternoon, and then fly out Thursday morning. It was going to be a quick trip. All went according to plan for about the first half of the first day.........

We arrived Tueday morning, and spent a few hours wandering around Union Square. After lunch we headed over to UCSF for Matt's appointment with the neuro-oncologist. We waited for over an hour and a half. That's not such a big deal - I never mind waiting, as long as the doctors take a lot of time with us. This appointment went very well. We talked about Matt's diagnoses and treatment history. There were actually two doctors and they told us that the treatments Matt has had so far are exactly what they would have done there. That was very reassuring! We also talked about treatment options, should Matt's tumor begin to grow again. The appointment was coming to a close and the doctor was performing a neurological test on Matthew. She wanted to watch him walk and noticed him limping a bit. She had him take off his socks and shoes and examined his legs and found his left leg to be swollen and red. She suspected another blood clot and so sent us across the street to the ER.

Sigh.

The ER was, well, interesting, I suppose. Let's just say that the ER in a big city made me REALLY miss our little Primary Children's Hospital! For one thing, UCSF is not a children's hospital. It is huge and the ER sees some crazy stuff. There's lots of security and signs everywhere telling the staff how to deal with homeless people, drug addicts, and people with the flu. Matt was taken up pretty quickly for an ultrasound of his leg and, sure enough, a clot was found. Long story short, we arrived at the ER about 6 pm, I left at 10:30 pm to take Audrey to the hotel once we learned that Matt would be admitted, and Matt didn't get a bed in the hospital until 3:00 am. Warren was not amused.........

The protocal at UCSF is that patients who are receiving IV Heparin (which they use to treat blood clots) must be treated in the intensive care unit. Wednesday morning, I called the answering service for the radiation oncologist to pass along the message that we would not be able to make our 8:30 am appointment. We spent all of Wednesday in the ICU, trying to convince everyone we spoke with to let Matt go. :-) Hanging out in the ICU of a hospital in another state, during flu season, with an infant is not exactly a great time. Thankfully, they kept Matt in an isolation room and they did allow Audrey to stay with us (infants who are not patients are not allowed in the ICU at Primary's). During the stay, it was found that for some reason Matt's Lovenox levels were not right. He was on the very low end of the therapeutic range last week but when they ran the labs again, his levels were not in therapeutic range. It was decided to increase his dosage of Lovenox.

Miraculously, the last doctor we were to meet with, Dr.Lustig, happened to be the attending doctor the night we were in the hospital. Even though we had to miss Matt's clinic visit with him, Dr.Lustig was able to come up to the ICU and meet with us right there. Ultimately, even though the trip didn't go as we had envisioned, Matt was able to meet with two of the doctors we had scheduled, and the other was able to call us and we had a telephone conference. It all worked out! I'm so thankful they found the clots. It was quite a good catch, as we hadn't even been visiting them for that purpose. It was a blessing!

Matt was released after only about 48 hours in the ICU. While we were in San Francisco there was a problem with the Bay Bridge and it was closed. Of course, the Bay Bridge is on the way to our airport....... Between a stay in the ICU, excess cab bills back and forth to the hospital from our hotel, and a $200 cab ride to the airport (we had to go clear around to another bridge), this turned into quite an expensive 'little' trip!

The doctors at UCSF presented Matthew's case at 'Tumor board' the day he was released. All of the doctors we had met with were present. It was determined that they agreed with all of Matt's treatments he has had so far. They wouldn't have done, for instance, a different chemotherapy, or radiation. They also agreed that our plan of not doing anything right now, while his tumor is stable, is the right choice. We will continue to watch the tumor closely and if it begins to grow, we will do radiation at that point. Also, all the doctors agreed that a vagotomy (the surgery that will hopefully help stabilize Matt's weight) wouldn't hurt future options for his cancer treatment. I think we are going to go ahead with the surgery. It seems like a pretty minor procedure that could have very major benefits to Matthew. He has gained 12 kg. since his last visit to SF 4 months ago - that is almost 27 lbs. The potential side effects of the surgery seem less problematic than the side effects from obesity. We pray we are making the right choice. We have considered our options for several months and are feeling pretty comfortable with the decision.

San Francisco here we come!

Matt has a follow-up in San Francisco with the hypothalamic obesity specialist in two weeks. For awhile now I have been feeling like I wanted to get another opinion on other aspects of Matthew's treatment for his cancer issues. UCSF is a brain tumor consortium hospital and I wondered if they might have some different treatment ideas for Matt's unique set of issues. I have put off making the calls to arrange a visit with other clinics at UCSF and decided to call today even though I was pretty sure it would be too late to make the arrangements. I was so excited when I started to call around and found that everyone was really willing to make things happen for Matt! Now, over the span of two days, Matt will meet with the pediatric neuro-oncology practice and a pediatric neuro-radiologist, along with the Endocrinologist we've met with previously. The oncology doctors will review Matt's chemo protocols (they call this his 'roadmap') that he has already done. They will discuss any treatment options we may have overlooked and will recommend a course of treatment. Then the radiologist will discuss Matt's radiation future. We are most interested in meeting with her because she will be able to talk to us about whether the surgery for the obesity would be a bad idea in light of the future radiation treatment Matt may need. We will discuss which type of radiation would be most beneficial for Matt's particular case and determine whether SLC has the capability to perform that radiation. Some larger centers have different fancy radiation abilities. We'll see what might be best for Matt. Lastly, we will be meeting with Dr.Lustig to discuss the vagotomy surgery for weight management. It will be a whirlwind of a trip but I am so excited to meet with these specialists. I feel so thankful that everything worked out so smoothly. It is meant to be!

A girl in a house full of boys....

After church, Will was playing with Audrey. Unfortunately, her bow fell off. Fortunately, she had a big brother there to remedy this crisis!

A moment of motherhood perfection

Once in awhile, amid the complaining, fighting and screaming, I have a moment that makes me suspect I'm not totally ruining my children. It seems that all those family home evenings about loving our brothers (and sister) and doing nice things for them, and sticking up for them when someone is being mean might have sunk in. Perhaps Will was actually listening to General Conference when President Monson talked about true Christian service - you know, the 'warm fuzzies talk'?? Anyhow, the other day William did this for Matt.


Sometimes I forget that my other children are participants in this whole cancer experience, as well as Matt. They are acutely aware of Matt's medical routine. Will knew exactly what medications to set out for Matthew, where they were kept, that he ordinarily takes his evening medications with milk, and that he needed a shot. This is one of the reasons we have decided to allow Matthew to take a trip through the 'Make a Wish' foundation. It promises to be a spectacular experience. We are looking forward to a whole week where we will all have a fabulous time, and hopefully, our 8 and 6 and 2 year olds will forget for a moment that they have a big brother with cancer. Of course Matt is the 'wish child' and he had the experience of choosing his wish and will be the spotlight of the week BUT I feel like our other children deserve the trip as well. Matt's siblings deal with many unanswered questions. And they are totally and completely patient as they deal with Matt's repeated hospitalizations and almost weekly day-long doctor visits two hours away. They remain cheerful and are wonderful for Matthew. They keep his life as normal as possible, and I think they understand their important role better than I give them credit for!

Update!

So, today Mr.Matthew had a full day of doctor visits at PCH. We went to see his opthamologist first. Good news there! Nothing has changed in regards to his vision and eye health. We do have to go get the 'visual fields test' (this checks his peripheral vision), but that is just something they do every so often with Matt, not something that means they are worried something is wrong.

Later this afternoon Matt had another ultrasound on his leg, looking at the clots. Good news there, too, as the clots are GONE! Yippeeeee! The ultrasound was followed up by a visit to the Hematology/Oncology clinic. It was sort of strange to be there for the Hematology side of things, rather than the Oncology side of things! His Doctors said they were pleased with the way things looked, ran more blood work to check his clotting levels, and we were on our way. I'm not sure how much longer Matt will need to remain on the Lovenox. One doctor said maybe as few as three more weeks and the other we saw said 3-6 more months of treatment........ :-) Gotta love the consistency!

Matt also met with his Psychiatrist, Dr.Martini (I have to say, I think it's sort of funny that his psychiatrist is named Dr.Martini........) We are trying a new medication with Matt. The out of control feelings seem to be getting worse, including a few episodes of him losing it and crying at school and also overreacting to things at home. His doctor wanted to try Prozac - we'll see how it goes!

Can I just say that I LOVE my Mom! She is just marvelous! Today she took off work to help me, as Warren is out of town and the boys were all out of school. The initial plan was for all of us to sleep over at her house last night, and then today I would take Matt and Audrey to the appointments and she would keep the other boys at her house. Well, that plan changed when Matt's school called yesterday because he threw up (poor kid!) When I saw him, I thought he didn't look right and so gave him a shot of solu-cortef (this is the hormone your body makes, but Matthew's doesn't, when you are ill or when you have a 'flight or fight' response). He went up to bed and slept for 16 hours, waking up this morning feeling fabulous with no signs of an illness. I don't know if he was truly ill with some sort of 24 hour stomach bug, or if his feeling ill was due to his adrenal insufficiency. Anyhow, we put Matt to bed and didn't go over to grandmas for a sleepover. This morning, as I was getting ready to leave, my mom called and said their water-heater had gone out in the night, so she was without hot water today! Probably not a great day to have all the grandkids! So, instead of keeping my boys at her house, she came with me to Salt Lake. It was actually really fun (well, maybe she doesn't think so!!!) She took the boys to the cafeteria for a donut during the first appointment, then we all went out to lunch. During the 2nd half of the day, they all stayed in the car and watched a movie, and then came in the hospital and hung out waiting for Matt and I to finish (some volunteer took pity on my mother and came around with a cart full of books. Each boy was able to choose one. I love PCH!) My mom is just so amazing, and so good to me! I don't know what I would do without her help - oh, and the boys love her, too!
Thanks mom!

Bare Lake

The view at dusk!

Recent developments

So, I guess I should update the latest about Matt. He has had such a fantastic summer! His central line was removed which has meant one significant thing - SWIMMING! It has been nice to not have to worry about caring for his line.

Bye Bye Broviac! We loved having you because that meant Matt didn't need to get poked, but are happy he can now shower and swim. It was nice knowing you!


Matt started Middle school this year. His school has FOURTEEN HUNDRED kids! I am not kidding! There is only one middle school in our entire district, so the middle and high schools are the same size. Too big, in my opinion. It is a good school, though, full of dedicated teachers. Matt is enjoying it very much. The first week of school he seemed really wiped out, though. I had heard that the kids came home from middle school exhausted, so I thought it was just the adjustment of a new routine and big school. By Friday of that first week, though, I realized something was up and, sure enough, Strep Throat! Poor kid wasn't wiped out from school, he was sick! We got that treated (the butt shot of Penicillin is AMAZING, by the way - less than 12 hours after it was given he was 100% better).

The next week was a short week because of Labor Day.

Tuesday of the third week we received a call from the school reporting that Matt was in tremendous pain and couldn't walk. Of course Warren and I completely freaked out. The school called back moments later and said the pain was in his leg. He had been complaining of pain in his knee for a few days, but it seemed generally mild and we assumed he had pulled a muscle or something. Well, Warren went to pick him up from school and was startled by how much more pain Matt was in and took Matt directly to the Emergency Room. At this point, we were still assuming it was a pulled muscle, and I was worried about surgery for something like a torn meniscus or other such injury. At the ER, the doctor wanted to rule out the most serious of things that this pain could possibly be, and sent Matt for an ultrasound to confirm that he didn't have blood clots. No one was more surprised than the ER staff when it was discovered that the pain WAS from clots! It is really rare for a child to get blood clots, but we've learned that Matt is exceptional in every way! ;-) That evening ended with the adventure of Matt being transferred to Primary Children's Hospital via ambulance. He was put on IV Heparin and many tests were run to determine whether Matt has some sort of genetic clotting disorder. We are still waiting on the results of 3 of those tests, but the first two came back negative. Matt spent the rest of that week in the hospital and Grandma Julie rescued us and stayed with our other boys so we could both be at the hospital with Matt. Scary stuff! Blood clots are dangerous because a small piece of a clot can break off and go to the lungs, heart, or brain. Thankfully, we seem to have avoided that scenario! Now we just have one other thing to mark 'yes' to when we are filling out new patient forms at a new doctor's office. :-) Matt came home on an anti-coagulant called Lovenox. He has to give himself an injection twice each day. I am so proud of him! He does the shots all by himself. His belly looks awful, though! The blood thinner causes bruising so every place he injects has a baseball sized bruise. He says they don't hurt, but they sure look bad! Here's his belly after only a few shots of the blood thinner.


Matt holding Audrey. She was a tag-along on this hospital visit. Nursing babies have to stay with their mama's, even when their mama's have to stay with their big brother in the hospital!


Cute picture of Audrey in the hotel. This time, Warren and I stayed a few nights with Matt and a few in a nearby hotel. Matt seemed very well and stable and just slept all night. We often stay the whole time, but this time felt okay about leaving him to sleep peacefully while we slept more comfortably than is possible on the hospital couches! :-)

Why we love boating

(Matt had already gotten out of the car and gone up to bed.)

Labeling kids

I think children are too quick to be labeled these days. Andrew, though, believes that everything should be labeled and took the liberty of labeling Jake (where IS that Drew when I'm working on organizing his closet?!?)



A closer look......

Some Natisms

Nate is such a wonderful, fun child to have in our family. He has a pretty strong personality (note the 'Believe the Hype' shirt....) that I believe will serve him well in this life. He oozes confidence and is not afraid to stand up for things that he believes to be unequal or not right. I hope I can instill in him the power that personality trait can carry. If used for good, he will be an amazing example to those around him and people will continually be drawn to him. He is a natural leader and we are lucky to have him!

A few weeks ago we took the boat and headed to Willard Bay with just the older boys (Jake and Audrey napped at Grandma's house, which is very close to Willard). It was a fantastic day! We packed a picnic, ate on the boat and everyone had lots of turns tubing and playing in the water. After we were finished boating, we had the boat tied up to the dock while Warren went to get the car. All the sudden I hear a splash and look up to see Nate struggling in the water off the dock - without his life jacket! It is quite deep and Nate is not yet a strong swimmer, although he's had swimming lessons. Thankfully, I just hauled him out of the water and he was fine. After I get him calmed down, though, I asked him what he was doing. Did he fall in?

"I just wanted to see if it was deep," he replied!!!

What a way to test! I think the experience sufficiently frightened him and I'm confident that jumping in lakes sans life jacket will not be repeated (by Nate, at least).


This summer we also headed to Park City a few times. We discovered that on 'off' weekends, we can get a two bedroom condo type room at the Marriot Summit watch (a time-share resort). We took advantage of a great rate and played in the amazing pool, let the children go to 'kids night out' while Warren and I went out to dinner, and just generally had a wonderful few days away. Nate and Drew have learned to ride two-wheelers this year, so we took the bikes up to ride the biking trails around Park City. After their ride, Warren and Nate were in the parking garage putting bikes back on the bike rack. It is just the two of them until a pretty lady walks by and Warren is mortified to hear Nate do this:


That's our boy!!!

A baptism, two birthdays, and a baby blessing!

Last weekend was a bit chaotic in our home!
William turned 8 the end of last month, and in our church that is when children are given the opportunity to be baptized. Will was so excited for this great day. It was also time to bless Audrey and we decided to have both events the same weekend so relatives coming from out of town wouldn't need to come down two weekends in a row. It was only after scheduling everything that I realized Will's baptism day was also Nate and Drews sixth birthday! It was a fabulous weekend though, spent completely together as an extended family.

I can't believe my baby twins are SIX years old! They start Kindergarten the end of this month. Weird!




Will and Warren before changing into their white baptismal clothing.


Will and his display. He chose what he wanted to bring to show about himself and I think the choices are so cute!


Grandpa Ray holding Audrey right before Will's confirmation.


Audrey, after her blessing.


Our family adoring our sweet girl on her special day.


Four generations.

Sweet Sadie

Sweet Sadie Huish became a brain tumor angel this morning. My heart is heavy as I think of her family. They had a truly amazing perspecive and spirit. I learned so much about the way I want to be as a human being as I watched them navigate their trial with so much grace and courage - always doing what was best for their girl. Please pray for them as they go through these next hard days, weeks, months, and years. We love you Sadie! You and your family have been in our families prayers for awhile now. We will continue to pray! Thank you for your example and your bright smile, even during those most difficult of days. You were truly an inspiration to so many people!

A few pictures of my girl!

I still haven't uploaded the photos from my actual camera yet, but I did get some more with my phone. Audrey is getting so CUTE!! I mean, newborn babies have a certain charm, but for the first few days it's a very scrunchy, squished, splotchy charm! :-) Today I think she's looking a little cuter (is it bad to admit I don't think newborn babies are terribly cute......?)

Our BIG announcement!

I mean, really big. I mean 9.5 lbs. big!!! :-)

Audrey, minutes after birth. Look at that wild hair!!


Yesterday, I was feeling guilty because I was opting for an induction of Miss, "I'm too comfy in here for my own good". She had been measuring small at her 20 week u/s and although a later u/s showed all was well with her growth, I was still convinced she was going to be small. For one, I felt like my belly was a lot smaller than with previous pregnancies, for another, I had only gained 24 lbs., and, previously, I've NEVER gained less than 45.

I came to the hospital at 7:00 this morning. I am VBAC, so the doctor didn't want the Pitocin high at all. He came in about 9:00 and broke my water. By noon, I was in a really great labor pattern and really starting to feel the contractions. I had an amazing nurse who let me move around and was fabulous about getting me things to try. I sat on the birthing ball, walked the halls, used a rocking chair, etc.... Soon after my labor was really going strong, we decided to stop the Pitocin and see if I would stay in labor. At this point I was a 6. Happily, my contractions continued and I discontinued the Pit for the remainder of labor. The rest of labor was spent using a squat bar. I highly recommend this bar that attaches to the bed. It gives you something to hold onto and pull or push against to counter the strength of the contractions. I didn't 'squat' with it at all, but It helped me immensely (and helped Warren's poor fingers, as well!) About 2:00 I began feeling the need to push, the doctor was called, and we began the process of bringing this baby down. Even though I was fully dilated, Audrey was pretty high. Eventually (with a lot of screaming on my part! LOL!) I pushed her out. Her shoulders were pretty stuck, but I DID IT! :-) Once they weighed her, it was clear why she was a little difficult to push out. She was 9 lbs. 8 oz. and 21 inches long!!!! I couldn't believe it! That's 9 oz. bigger than Jake, my largest previous baby.

I am so glad I chose to induce, as I'm not sure I could have delivered a baby who was much bigger! Also, I am thankful I was able to labor without an epidural. I REALLY don't think I could have pushed her out if I was numb from the waist down. It took every bit of my effort and concentration to deliver her!

She is so sweet with black CURLY hair, big chubby cheeks and she already has rolls of fat on her arms and thighs! I'm not convinced she would have ever come out on her own, LOL! She was pretty comfy in there, and obviously eating well!

Audrey, about 8 hours old - she has a BOW although it is blue........ maybe I'll get a pink one tomorrow! :-)

Excellent day and STABLE!!!

Matt had a slew of appointments today. First an MRI, then a visit with Neurosurgery, then a visit with Oncology. It was wonderful to learn early in the day that the tumor is STABLE!! Gone would be perfect, but stable is excellent - and about as good as it gets for us! Dr.Walker is not recommending surgery at the moment. He also said he would try to hold off on radiation.

We celebrated our good news with a visit to PF Changs for lunch in between appointments. I joked that if we had received bad news, we would have eaten our lunch in the hospital cafeteria! :-)

After lunch Matt had an appointment with Oncology, where he hadn't been in almost 7 months............BAD MOMMY! We got all up to speed with them. They are also recommending we hold off on any treatment as the tumor remains stable. Matt will be having his Broviac removed sometime very soon - like this week! I feel sort of giddy and surreal that we so unexpectedly received this gift of Matt's cancer stabilizing. One day, we were plugging along, fighting this thing with chemotherapy, and talks of radiation and a 4th craniotomy, and now, suddenly, it's stable and we are cautiously going to get on with our lives. It's a very strange feeling! I know that things can and probably will change in an instant, but for now, we will enjoy what we've got!

Surprisingly, all of the doctors we met with were very much in favor of Matt having the surgery to treat his hypothalamic obesity. As I was explaining the surgery to Dr.Walker and we discussed the issues Matt's facing, I mentioned that the surgeon wasn't sure Matt should have the surgery because most of the kids are so much bigger than Matt. He echoed my exact sentiments when he said, "why would you let it get that bad if you had a treatment that you thought might work??" Exactly. Also, both Dr.Walker and Dr.Lemons had heard of Dr.Lustig and thought him to be on the forefront of obesity research and very well-respected in the medical community. This was so reassuring! I have worried and wondered what *other* doctor's thought of Dr.Lustig. Just because a doctor is well published and presents at a lot of conferences doesn't automatically make him a doctor I want performing experimental procedures on my son! It sounds like that's not the case with Dr.Lustig, though. Both of our local doctors felt confident that we were seeing the right doctor for Matt.

More San Francisco, More Questions.

This past week, Warren took Matt back to San Francisco to talk more about treatment options regarding the hypothalamic obesity. The bad news is that the testing confirmed the diagnoses. Matt's insulin levels during his oral glucose tolerance test were off the charts 30 minutes after beginning the test. It should take about 90 minutes for his insulin to 'max out' and it shouldn't ever get as high as Matthew's was. Also, although we've been pretty happy about Matt's weight gain this month (after all, it was only about 2 kg.!), the doctor was very worried. Because we track his weight in Kgs., it doesn't register how much that would be in pounds. On the one hand, two months ago he gained 5 kg. or ELEVEN pounds in one month. That's why 2 kg. feels pretty stable! However, that is 4 lbs. With a gain of 4 lbs. a month, Matt is on track to gain 50 lbs. over the course of a year. When you put it that way, it's much scarier! Also, because he has had several months of even more extreme weight gain, he is actually on track to gain closer to 70 lbs. this year. YIKES!!!

Warren and Matt also met with the surgeon who is working with Dr.Lustig and actually performs this experimental surgery. Warren was really impressed with her - she is the head of pediatric surgery at UCSF. She was leery of doing the surgery just yet. For one thing, she didn't think that Matt looked 'that bad' yet. The other children who have had this procedure are so big they can't fit in the MRI machine...... I don't know how I feel about that. Do we really need to let it get that out of control before we try something aggressive to help him? I'm uncomfortable with the 'do nothing' route just because we happened to catch the hypothalamic obesity earlier than some other patients do. Her other rationale, though, made more sense. She is also not willing to do the surgery until Matt's cancer treatment is finished. Her fear is that by doing the surgery to treat something secondary to his cancer, that the cancer treatment options will be limited. She is not willing to risk that. So, we have a slew of appointments on Tuesday (MRI's, Neurosurgery, Oncology) and we will try to determine the best course of treatment for Matt's remaining tumor. I am also anxious to get these doctor's opinion on the surgery itself. I trust our doctors (especially Dr.Walker in Neurosurgery), and think it's a good idea to discuss risky, experimental procedures with them! Later next week we also have an appointment with Matt's local endocrinologist. We are going to discuss the possibility of using the medication (Octeotride) to treat Matt until we are able to get more clarity on the surgery. It feels better than doing nothing!

Broken arm: Our count is up to three.....

Yesterday I had a meeting right before church. As I walked down the stairs to the basement, Jake realized I was leaving and got upset. He started screaming and pulling on the gate at the top of the stairs......... The gate opened. :-(

Jake fell about halfway down the carpeted stairs, but it was a pretty hard fall, as he initially began falling head first! We looked him over and thought everything was fine. He was walking, he stopped crying pretty quickly, and he seemed to be moving well. We took him to church for the first hour and then Warren brought him home for a nap. When I got home, and Jake woke up from his nap, he seemed really 'off'. For instance, when he woke up he was just lying in bed, on his belly, crying. Usually he is standing up. Then, when I took him downstairs, he wouldn't stand up from his sitting position, and he couldn't quite manage to pick up the toy he wanted off the floor. I decided to take him in to the Instacare, just to have them look him over. I didn't even know which limb I was concerned about! Was it his arm? His hip? His leg? I couldn't quite tell what was wrong, only that he wasn't moving quite right. The doctor at Instacare was great and we figured out that it was most likely his arm that was bothering him. After some X-rays (where Jake did GREAT, by the way!) we saw the break in his arm - right above his wrist.

I am kicking myself that the gate was up, at all! Jake is very proficient on the stairs, and we have already removed the gate on our upstairs stairway. If there hadn't been a gate on our basement stairway, Jake wouldn't have fallen (ironic, huh!)

When Jake and I got home, the boys were pretty interested (injuries, in a house full of boys are always pretty exciting......) I jokingly said that since Will, Drew, and Jake had all broken their arms, now Nate and Matt were going to have to break their arms, as well. Nate looked at me, very concerned, and said, "Did the doctor say that..........?" I had to laugh!

I called our family orthopedic surgeon (yup, families with all boys need a regular orthopedic surgeon............) and he won't cast Jake until Wednesday. They want to make sure the swelling has had a chance to go down. So, for now, Jake is stuck with this hard splint and sling. I think keeping those on him are the hardest part so far! He seemed much happier with nothing holding his arm stable!

At least the break is not affecting his thumb sucking hand!

Apple has Fabulous customer service!!! (Assuming, of course, that you don't actually have problems with any Apple products.........)

I. Am. So. ANGRY!!!!
Usually, I am not a 'cool gadget' type of gal. I am the type who waits several years to replace her cell phone because I'm not completely sure I'll be able to figure out how to work a new one! I made an exception, though, when I purchased an iPhone. When my iPod was stolen out of our car, and my cell phone went on the fritz, I decided to splurge. Warren agreed, and my iPhone with the pink case was my Christmas present. I have come to depend on that thing, and love it beyond any reason. It had cool games for the kids (and me!) when we were bored. It took cool pictures. It had amazing apps that could do almost anything. It played music. It had a GPS. And it kept me organized with it's calendar.

I babied my iPhone, always keeping it clean and charged and using a hard plastic case with a screen protector.

On Monday, the unthinkable happened. My iPhone was in my purse as I got out of the car. I bent down to pick something up off the garage floor and heard something fall. My iPhone had slipped out of the pocket of my purse and landed on the hard cement of the garage floor. It took a moment to register that the shattered black glass on the ground was my iPhone!!! I couldn't believe that a gadget meant to be used multiple times per day was so fragile that it would shatter from a 3 foot high fall!

Today I had to go back to Salt Lake for an appointment for Matt. I stopped at the Apple store, certain that they would listen to my sad story, see my *practically brand new* shattered phone, and do something about it! After all, Apple is famous for their amazing customer service. I couldn't have been more disappointed. There were lots of, "I'm sorry's" all around, but the best they would do for me was 'just' have me pay $199 for a new one - the exact same amount I paid for my current one less than 4 months ago. They acted like they were doing me a favor! I'm sorry, but I don't have $400 to pay for my phone every 4 months! I decided that I would go to AT&T. They are the ones who sold me the phone. I figured, at the very least, I would be able to purchase an inexpensive phone to use for now. Well, they were even less helpful. They were also unsympathetic to my cause and the only option they gave me was to either purchase a 'basic' phone without incentives (after all, I still have 20 months left on my contract) - the prices began at about $200, or I could add a line to my current phone, adding $20 per month to my bill and purchase a phone at the promotional price (these started at about $70). Any option, I choose, I am getting totally and completely screwed!

I was just starting to become an Apple fan. Our family owns 2 iPod shuffles, 2 different generations of Nano's, a 60 gig video ipod, a 120 gig classic ipod, an iPhone, and a MacBook Pro. I buy a lot of music and videos from iTunes and our family has spent MANY thousands of dollars on these various Apple products. I am furious that they would do nothing to help me the ONE time an Apple product of mine has needed replacement (or repair, I wouldn't have cared, either way).

As a classic Yuppie, I buy some higher end products. Each and every one of them is guaranteed to my full satisfaction. I have never had a 'splurge' product that wasn't offered with superior customer service. Too bad the iPhone didn't meet that expectation. Just an example, I have a set of glass mixing bowls from Williams-Sonoma. They are also made out of tempered glass (the same glass that shattered on my phone). I have owned this set of 12 bowls for 13 years. I have dropped them numerous times, as I use them daily. None of them has even a chip. None of them has shattered. If they did shatter, even after all this time, do you know what Williams-Sonoma would do? They would replace them - without blinking an eye! That is the sort of customer service I expect from high end products, and one of the reasons I purchase high quality products. The iPhone and customer service that came along with my purchase have been extremely disappointing.

Holy Hand-me-downs, Batman!

This small-ish laundry basket is full of all the things that I have bought for our new little girl. I have only purchased a few things and they have to *really* catch my attention. I've also tried to buy things in larger sizes. Most of that basket is full of clothes sized 18 months, as Gymboree had an excellent rack of darling clothes for $4.79 each, and they even had coordinating pieces! They didn't, however, have a ton of baby stuff on the rack, so I bought about 6 outfits for two winters from now. I'm quite proud of my restraint in purchasing clothes, as a big part of me wants to go CRAZY and buy everything I think is even remotely cute! It is way more fun to shop for girls clothes and accessories than it is to shop for boy stuff!!!!



This photo explains, in large part, why I'm not feeling the need to go purchase a ton of new clothes for this little angel! Everyone keeps giving me huge sacks and boxes full of FABULOUS baby girl clothes! Most of the clothing in these bags is for up to SIX MONTHS OLD - seriously. She will NEVER be able to wear all of these clothes. If I changed her outfit 3 times per day for 6 months, there would still be things in these bags that were never worn. To give a bit of perspective, I just cleaned out Jake's drawers and gave everything from his first year to a gal with a baby exactly one year younger than Jake. His entire first year wardrobe filled 2 sacks, and they were packed pretty loosely. Now I've got, what, six sacks for our baby girls first 6 months!?!? Crazy!!! Now, don't get me wrong, I'm excited to have such a plethora of pink to choose from, I think I might just need a way to share the love! Does anyone need any baby girl clothes..........?

A picture to explain our panic.....

This is a graph I (okay, Warren actually - I'm a dunce at Excel) just made of Matthew's weight gain over the past 18 months. Keep in mind that before his diagnoses, his weight also increased. That was one of our only indicators that something was wrong - Matt went from being in the 50th percentile for weight and 75th percentile for height (where he had been since birth) to shooting off the charts in both height and weight. In hindsight, that was a sign of his hypothalamic brain tumor, but at the time we just worried he wasn't getting enough exercise! Anyhow, back to the graph. We've got a pretty good record of Matt's weight since diagnoses because we track his sodium levels along with his weight. I went back and looked at his weights over these past 18 months and made a graph. You can see his gradual climb of 25 lbs. the first year after diagnoses (still extreme), but once you hit his surgery date at the first part of December, you can see the almost unbelievable 25 lb. spike to now!

Meeting with Dr.Lustig was very reassuring and very refreshing - although it did leave us with a ton of questions about which direction to go with Matt's care. Dr.Lustig is *the* person researching hypothalamic obesity, and he reassured us that there is absolutely nothing we could do to stop the weight gain. We have had several people tell us that Matt just *HAS* to be sneaking and hoarding food, and that we needed to lock our cupboards. I have had a really hard time believing that because anyone who knows Matt knows that he is the most honest child on the planet. He has an almost debilitating conscience, is honest to a fault and he says he's not sneaking! Also, I do all the cooking and grocery shopping. I never notice food missing and I am with Matt for the majority of his meals. I spend 90% of my life in my kitchen and I have no evidence or suspicion that Matt is stealing food! Dr.Lustig discussed a study done in the 1970's in which 40 children were confined for one month. They were fed a strict 500 calorie per day diet (that's the equivalent of 2 pieces of bread, a piece of fruit, and a glass of milk!) for that entire time. At the end of that month EVERY SINGLE ONE OF THEM had gained weight!

Dr.Lustig has discovered a connection between the way the hypothalamus is damaged and the messages it is sending to the body in individuals with this disorder. When you eat, and create fat cells, those cells have something called Leptin inside. When you have a lot of Leptin (fat), your Vagus nerve (which goes from your brain to all of your organs, including the stomach) tells your brain that you have a lot of energy. It tells your brain to make you feel full, and it tells your brain that your body is free to USE that energy - for exercise and such, but also for basic functions like sweating, maintaining body temperature, etc.... For some reason, in people with HO, their brains get the message that they have NO Leptin, when in reality they have oodles of it available. For this reason, the body goes into starvation/survival mode. They create excess insulin to help pack away these calories. So, Matt's brain thinks his body is starving and won't allow him to use the calories that he has stored so amply. This also explains why Matt is often cold and clammy, doesn't maintain his body temperature well, and doesn't sweat (truly - no sweat, even when we've gone on a long hike and everyone is hot and sweaty!)

There are very few options for treatment of this extremely rare disorder. The first is a drug called Octeotride. It suppresses the excess insulin production and has been marginally effective. Dr.Lustig has written several papers and done several research studies with this method. He says it can often help to stabilize weight, but most kids don't lose any weight. It is also a drug that is not approved for this purpose, so you have to appeal your insurance company. The drug is also extremely expensive ($1,600 per month) and difficult to administer. It is a shot and is apparently takes some extra training for the nurses who give it. It is not a practical option for long term, but some people have found it very helpful for the 6 months or so they can remain on it.

The second option is even less well researched. It is a surgery where they actually go in and clip that Vagus nerve - where all the Leptin/brain messages are being mixed up. It has been extremely effective in animal studies (scary, huh!) and they are just beginning to use it on people with HO. Dr.Lustig is doing a study right now, but so far he only has 5 children who have done it. The success with those 5 has been great, but it's not exactly a large sample! By cutting the nerve, the insulin production goes down permanently, there is a weakened hunger mechanism, and the brain can no longer send those confused, "you're starving to death" messages. Obviously, our concerns lie in the lack of history, but with such a small population that has the disorder, I'm not sure we'll ever get a study that thousands of children have validated.

So, that was basically our trip! We've got a lot to think about. Warren will take Matt back the first part of May. I'll be 36 1/2 weeks pregnant. I would prefer to not give birth on an airplane, so I think I'll probably stay home....... although it will be hard, as I want to be there! During that next trip, we can talk more about the surgery, as I'm sure we'll have lots more questions by then! We are also meeting with the surgeon just to get a sense of the reality of the surgery, recovery, side effects, etc.... It sounds like it would be a quick outpatient procedure, done laparoscopically. I just wish there were more options! Even more doctors who were researching this would be great! Everything I google comes up with articles this doctor has written, and I'm not sure I'm really getting unbiased information! :-) I guess I should just be thankful that there is *someone* out there working on ways to help.

Oh, and San Francisco was fabulous! The weather was perfect all 3 days. We wandered Fisherman's wharf on Sunday - eating fresh seafood on the patio of a restaurant that afternoon. Monday was spent in the hospital nearly all day long, although when we left we ate the most fabulous Mediterranean meal. Maybe I was just starving (since Matt had to fast, we all did), but everything tasted so wonderful! Then Monday morning we walked down to Union square, had a yummy breakfast and wandered expensive shops for a bit. When we came back to our hotel we checked out, had our luggage stored, and went to the top of our hotel to this amazing restaurant (Top of the Marc) where we had expensive salads and expansive views of San Francisco. It was beautiful - and who knows if we'll ever stay at that hotel again, so it seemed like something we should take advantage of while we were there! It was a fun, but quick trip. I wasn't all that excited to land in SLC, wearing my capris and spring shirt with sandals only to find *more* snow and crazy cold temperatures! Come on Spring!

Baby Blues.

No, not the REAL baby blues some people get........ I mean every bit of baby gear, EVERYTHING I own, is BLUE. I'm too practical to go buy all new pink stuff (Warren, keep your comments to yourself, here), but after 5 boys, I don't want people assuming this little one is a boy, too! :-) Silly, I know. I did start out, 11 years ago, making sure I bought gender neutral gear. However, after boy number 2, then 3 and 4, and finally 5 came along, we sort of gave up on the whole neutral color scheme thing. Our infant car seat is black, silver and blue, my jogging stroller is navy, my diaper bag is navy, all crib bedding and blankets definitely have a boy theme and are largely navy, bright blue, or red. We don't own a pink, purple or even yellow sippy cup! Potty chair? Blue of course - actually we own 2 of them.

Sort of a pointless post, but it's what's on my mind at the moment! :-)

Oh, just FYI, Matt is going to see the San Francisco doctor on March 30th! Yippeeeeee! Warren and I will take him on the 29th, he's got appointments most of the day Monday, and then we'll fly back Tuesday. Carolyn (my MIL) and Megan (my SIL) will be in charge of my other crazy boys. Keep your fingers crossed that this doctor is a-m-a-z-i-n-g! I think I've got my hopes up a bit too high!

YIPEEEEE - San Francisco, here we come!

Not for anything 'fun' mind you, but something even better - a specialist who might be able to help Matt with his Endocrine issues! If you google anything related to pediatric endocrinology, especially if it relates to obesity, this doctor (Dr.Lustig) is mentioned. He has written and researched and pioneered a TON of studies on Matt's particular combination of issues. Parents on both my Panyhypopituitarism and Pediatric Brain Tumor boards just revere this man. His name comes up frequently. Well, in November I emailed him asking about a consultation and second opinion on Matt. My request was met with a rather curt reply that basically said we had competent Endocrine care and that he didn't recommend travel out of state to see him. He said he would be happy to consult with my doctor, but basically he didn't want to be involved with Matt's case. I was kind of grumpy about it, but figured there was nothing I could do.

Well, last week we had an excellent appointment with Matt's endocrinologist. We got a lot of things worked out that have sort of been hanging. Matt's weight has increased considerably since his last surgery. I don't believe his diet has changed, and he doesn't seem to be eating an abnormal or unhealthy amount. However, he has gained 10 Kg.(about 25 lbs.) since his surgery in December, and 5.5 Kg. in the past month. That is a gain of 11 pounds. In ONE MONTH! Seriously, you cannot eat that much, or have that sedentary of a lifestyle. I think about it in pregnancy terms - I've gained 18 pounds in 7 months and that is a pretty dramatic weight gain. To gain 10 more pounds than that, in less than 3 months is really quite mind boggling.

Anyhow, Dr.Donaldson (our Endo.) said he doesn't see Hypothalamic Obesity enough to treat Matthew. He has had a handful of patients with the disorder, and has been wholly unsuccessful in treating them, even when he has consulted with Dr.Lustig. He wants to hand over care to Dr.Lustig - and it was even his idea! I was so excited to go home and draft another email, mentioning that Matt's doctor was the one who felt like Matt needed to see him. He replied quickly and said okay. I'm waiting on the details of exactly when we need to book our tickets, but I do know they are working on it. I've been cc'd on several emails talking about tests and things that Dr.Lustig wants done.

I am just SO EXCITED and HOPEFUL that this Doctor has the skills and experience that will help my boy!

Why do we buy them beds?

Last night, as Warren and I were checking on our boys before we went to bed, we found this. Hmmmmmmm, where are Nate and Drew? I know we tucked them in, all snug in their beds........ I remember reading a story, telling them several times to brush their teeth, and listening to them say their prayers.







But here we have an empty bottom bunk.......


And an empty top bunk........


And two 5 year old boys, snuggled up on the FLOOR! :-)

I am clearly missing the novelty of sleeping on cheap polyester blankets, on the hard floor, and sharing one puny pillow. All the while with two comfy beds, complete with cozy flannel sheets within sight! I am getting OLD! :-)

Good News!

This week Matt had his first set of MRI's since his December surgery. We went down to the appointment fully expecting to talk dates for his 4th craniotomy to try to get rid of the rest of the tumor, and then radiation. I have always felt uneasy about radiation. The thought of radiating my 10 year old's brain just freaks me out! I know it might be necessary some day, but will happily push it off as long as possible - forever would be excellent.

Anyhow, Dr.Walker (the neurosurgeon) was pretty psyched to see that the remaining tumor is stable! You have to understand what 'stable' means to our family. Matt will most likely always have some tumor in his brain. It is not in a spot that the doctors can just remove it. Stable is about as good as our world gets! The tumor actually measured a bit smaller than his December MRI showed. This was most likely due to swelling that is present right after surgery, but is gone now. Because of the stability, Dr.Walker recommended doing NOTHING! No radiation, no surgery, no chemotherapy, nothing at all! We have to clear that idea with Oncology, but I don't anticipate them arguing with the recommendation. This is very exciting news for us, as Matt has been on some sort of treatment since August 2007. By the time Matt gets his next MRI's, he will have been free from treatment for 5 months. This gives us a wonderful chance to focus on his Endocrine issues. These are more difficult to manage on a day to day basis, as after every surgery we have to work hard to get him stabilized!

So, basically, unless we see a physical change in Matt that necessitates treatment earlier, we are FREE until this new little one arrives to our family. I think it's a tremendous blessing!

Some sad news, though, my Grandfather passed away last Friday, and we had his funeral service today. He has been in poor health for several years, but it still makes me sad to see his time on this earth come to an end. Matt was particularly sad. With his strong emotions coming through uncontrollably, funerals are very difficult for him to attend. He loved my grandpa, and would often receive coins as gifts from Great Grandpa Willie. Great Grandpa will be missed by our family - and especially by my tenderheart little boy!

Words. Eating them. And sharing them.

Sharing my words:
Today at the grocery store I ran into a friend from high school. It is always surreal to see someone from your past in such an unexpected place! It was fun to chat with her and meet her beautiful daughters. In the course of the conversation she asked what had brought us to Cache Valley. To me, this story is very much a part of Matt's cancer story. We had been living in Chicago, we started feeling pretty strongly that it was time to move closer to family. An opportunity arose (Warren working from home is not a 'normal' opportunity. Very few people at his firm work from home, and it really is an unusual situation) and we moved close to family. Less than 3 months later, Matt was diagnosed with brain cancer, had his first craniotomy, and was on chemotherapy. So, you see how the 'how did you end up here' conversation inevitably brings up the 'my son has brain cancer' conversation? I'm just never sure that I should dump our story on a friend I haven't seen in 14 years! On the one hand, it feels a little 'pity party-ish' to dominate the conversation in this way. On the other hand, I think my feelings would be hurt if an old friend didn't mention something about her child with cancer and I found out through the grapevine. It's so awkward! I'm just not sure what I would say to me if I was hearing my story! :-)

Eating my words:
I've always had pretty strong feelings against over medicating children. I think ADD and ADHD can be mis-diagnosed and that too many of our children are being medicated. I am a big proponent of good mental health and believe in the issues that need to be treated. I just feel like many children are walking around in a medicated daze.
So, of course, in the way that happens the longer you are a parent, I am having to eat my words and admit that sometimes our children do need to be medicated with drugs that I've always been horrified about using on children.
Matt's last surgery has created two new issues. First, his hypothalamus no longer will regulate his appetite. This translates into an almost insatiable appetite. You know that, 'I can't move I'm so stuffed' feeling you get after Thanksgiving dinner? Well, Matt doesn't anymore. His hypothalamus will also make him put on weight even if he is eating a reasonable diet, and his body will not burn calories in a normal way. We are working hard to try to avoid 'hypothalmic obesity' at the moment. Matt entered the hospital weighing 63 kg. on December 11th. Right now he is hovering around 70 kg. That translates to a weight gain of 15 lbs. in less than 2 months. It's scary! We saw the Endocrinologist a few weeks ago and he put Matthew on an appetite suppressant. It does seem to be helping! Hopefully we can train Matt's mind to eat the right amount, even if his body isn't helping to regulate that at all!

Our 2nd issue is concerning Matt's 'frontal horn'. Apparently, this part of the brain helps control and regulate emotions. Matt no longer has a frontal horn. The neurosurgeon thinks it was eaten away by tumor. Ever since Matt's diagnoses we've noticed some mild mood lability - getting overly upset about small things, etc.... We feel very lucky because some brain tumor or brain injured kids get really angry or really mean or really violent. Matt isn't that way at all. He just can't stop himself from getting extremely upset about really small things. For instance, the other day he misplaced his shoes. We were looking for them and I saw that they were under the table. When I called Matt over to show him where they were he began sobbing pretty hysterically and saying, "I'm such an idiot - they were right in front of me the whole time! I feel so stupid." It's sort of bizarre to see someone get so upset over lost shoes! Then, the most recent episode happened at school. Apparently the computer teacher asked the children to only print out one of their book reviews. She said that she would take any extras that were printed out, and she made sure to ask the children to only push the 'print' button one time. Well, Matt accidentally double clicked the button and somehow ended up with 3 extra copies of his assignment. He burst into tears in computer lab, in front of all his friends. When I asked him what had made him so upset he said he was embarrassed because he 'hadn't followed the rules'. I tried to explain that we all make mistakes and that it was no big deal. I pointed out that no one in class had thought it was a big deal, and even the computer teacher hadn't been the least bit upset. He was still devastated that he had done something 'wrong'. That day, I knew we needed help, so I called the clinical psychologist who we've worked with in Oncology - an absolutely amazing resource and wonderful person! He went and talked to the head of Child Psychiatry and they were able to get us in right away. This doctor was so nice. He recognized that the problem was stemming from the damage to Matt's brain and prescribed a low dose medication. He also recommended some therapy sessions which he is going to do. He said it would be helpful to teach Matt some strategies for dealing with these feelings before they make him so upset. I am thrilled! We go back next week for a medication check, and Matt's first therapy session.

So, now I've got my child on appetite suppressants and anti-depressant/anxiety medications. I do think they are a necessity, and I also think we've been seeing results from them both. But, I have sure had to eat my words and re-arrange my feelings about children on both these types of drugs!

Oh, and on a happy note, Matt won at the next level of 'Reflections'! Now his poem is being judged at State! If it wins at State (it is one of 20 entries for his age group), it will go onto Nationals! We are so proud of him and excited that his writing is receiving recognition. It's so good for him!

Funny, no?

I was just sitting with Matt and Will at the kitchen table while they complete their homework. As I was correcting Will's math assignment I came across this question:
60 seconds make one:
60 minutes make one:
24 hours make one:

Pretty straightforward stuff. Here was Will's answer:
60 seconds make one: minute
60 minutes make one: WHORE (misspelling hour)
24 hours make one: day

Perhaps it's my lack of adult conversation (Warren has been travelling a lot and is in Chicago right now), or my dirty mind. I don't know. I do know that it made me laugh out loud....... and it's not like a joke I can share with my 7 and 10 year olds. So, here I share my warped mind and confess that sometimes my children's homework makes me laugh. :-)

What an amazing kid!

A few months ago, Matt received the application to enter the 'Reflections' contest. Matt is a really amazing writer. Seriously, I don't think I wrote as well as he does when I was in high school! (insert sarcastic commentary on my high school education here)...... He has been working on a trilogy of books since last year. So, in the year he's had malignant brain cancer and short term memory loss, he has also written 3 long books (about 40 pages each) that are really engaging and fun to read. So, anyway, back to Reflections. Matt wanted to enter book 1 of his trilogy, "The quest for peace". We got all set to submit it and realized that for literature there is a word limit. Darn. Matt was upset, so I encouraged him to write something else. He came up with this poem (the theme for the year, was "WOW!").


Baby Jake

This marvel, my brother, he's better than any other.
He's cute, loveable, and extremely huggable.
I love him, as he loves me,
It's because we're family, you see.
Jake's cute and gentle, so I write about him with my pencil.
My littlest brother, one of my best friends, the love that we share just has no end!

I still remember the day Jake was born.
It was during the evening, not early morn.
When I first saw this small child, I thought,
"He's my brother, so tiny, meek, and mild."
But as I watch, Jake is growing each day.
In fact, he has even started crawling away!

Jake's growing and watching, so each and every day, you can bet that I'm trying to choose the right way!

Jake is a wonderful gift, no doubt.
Sometimes I wonder how I could ever be without this baby,
which Heavenly Father has given to me to take care of,
and hope he grows up to be like me!
This tiny boy grows so fast each day that I - I just don't know what to say
except........
WOW!!!!!

A few weeks after Matt submitted his poem, he told me they had an assembly for Reflections. He said he had been asked to read his poem, but that he hadn't won anything. Oh well. However, a week or so ago, I received the school newsletter that said Matt had been one of the first prize winners in literature for his school. The next day, I received a letter inviting him to a district wide awards ceremony that also mentioned he had not only won at the school level, but also the city level! Then, just on Sunday, we received a telephone call that said his poem had also won at the regional level and was going on to be judged at the State level! I am so proud of him!

I was really worried when I found out Matt had won at the school level, but hadn't realized he had been chosen as a winner. We're always worried about Matt's memory, if he is missing things at school, etc..... and for him to 'miss' something like this is pretty significant! Once I spoke with the Reflections coordinators, though, I felt a lot better. They said that at the school level, they don't use 'winner' language. Every child gets recognized. She said that she didn't think it was strange for him to not realize he had won. That made me feel so so so much better! Now I can just help him enjoy his success!

I think boys and girls might be different.......

This photo was taken with my phone by William. He sits next to Jake in the car and faces him, as Jake is still rear facing in his carseat. I thought it was a great photo!

Since we've found out that our baby is a GIRL, I have been thinking a lot about what will be different about raising her. It's sort of a strange thought, as so much of my identity is wrapped up in being the mom to all these little boys. I know what to expect at various stages, what to ignore, what to correct, what to laugh at, and what to cry over. Of course my boys all have unique personalities, strengths and weaknesses, but there are some constants that I feel I can depend on.
One example: about the age of 5, we have worried with each of our boys that they need to get their hearing checked! Matt went from a very responsive 4 year old, to a 5 year old who seemed to not hear us a lot of the time! In retrospect, I think he was just discovering the world around him and was very able to tune out the rest of us! Will was the same way - and we actually did take him to get tested. Of course the test turned out perfectly. When my mom spent those days with my boys while we were in the hospital with Matt, she was very concerned and wondered if we have ever thought about getting Drew's hearing tested. We just laughed. Hopefully, he doesn't really have a hearing problem!

Another example, here is Jake with a little farmer doll my mom and dad got him for Christmas. He really loves the doll, but there is absolutely nothing nurturing about the way he plays with it!
Here he is holding the doll and reaching for something.


And here he is whacking the heck out of the doll with the stick to his stacking toy.


I'm worried about being patient and nurturing to a little girl. My parenting style is pretty militant, ("Boys, shoes, NOW!") which my boys respond very well to. They know we love them, we laugh and play a lot, but there isn't a lot of 'touchy-feely' that goes on. It's easier to get boys to open up over a video game, not a heart to heart sitting on their beds! There's lots of wrestling, lots of physical activity, lots of noise. I hope I haven't de-sensitized myself too much from girl stuff! I hope I can be sweet and loving to a little girl to help her feel secure.

On the upside, I think I've gotten over my weird feelings about shopping in the girl section! Yesterday I went to SLC for a doctor's appointment for Matt. We took Carolyn, and shopped a little bit.


I absolutely couldn't pass up this darling, fur trimmed coat ($12 - Nordstrom Rack), and fabulous shiny red Stride Rite Mary Janes ($8 - Ross dress for less). They should both fit her when she's about 18 months old, so Christmas 2010! Do you know how long I have wanted to buy shiny Mary Jane Shoes? (Oh, that and ruffle bum tights - I'm still working on that one!)

We had our big ultrasound today.....

And, shock of our life (well, 2nd shock after finding out there was another little bean in there at all)......

IT'S A GIRL!!!!!

You read that correctly, it is not a sixth boy for our family. I think the boys were a little taken back. Will keeps referring to the baby as 'him' and saying things like, "mom, if this baby is a boy, let's name him......." Perhaps the finality of the gender hasn't quite sunk in for him. :-)

We decided to let the boys come with us for the ultrasound. We've never brought our children before, but they were interested in coming, and I thought the older 4 would enjoy seeing our baby. They really thought it was neat - especially when the tech put the machine on 3D. The boys said she looked like an alien - LOL! After she had done all the measurements and checked and double checked the gender (without telling us, but Warren and I have seen enough boy ultrasounds to be pretty sure this baby was missing some, um, parts) the tech asked the boys, "so what are you boys going to do with a baby sister?" The boys were shocked - it was so cute!

I'm feeling a little bit overwhelmed. I went into a store this afternoon and was browsing the baby girl stuff. I couldn't even begin to decide what to buy - so I left empty-handed! I felt like an imposter in this section of store I've ignored for 11 years now. I'm sure I'll get over that feeling pretty quickly. I'm also feeling oddly naive. I've sort of felt like I was getting good at this parenting thing (some days......) and with boys I have a general idea of what to expect and what to do. I am so nervous about how a girl will be different! Don't get me wrong, I'm excited, but anxious!

We're Home!

They finally released Matt from the hospital late this morning. It is such a relief to be back in our home! I am so excited to sleep in my very own bed! Matt seems to be very happy to be here as well. He just looks better when he's not in a hospital bed. He was able to get all cleaned up and has enjoyed the attention of his younger brothers. Will, Nate, and Drew have followed Matt around all day like little puppies. He has been darling to induldge them in games of 'Candy Land' and has even given each brother a gift from his stash he received in the hospital. FYI, if your child has to be hospitalized, the week before Christmas is the time to be there! I think our stuffed animal collection doubled, at least! There was always someone bringing around little gifts or something fun to do. Matt was also able to meet some Hockey players, and we were even there when the Jazz came! Unfortunately, Matt was getting an MRI right at that moment and didn't get to meet the players, but they did take a polaroid photo of themselves in his room and left him an autographed basketball.

Thank you again for all of your prayers and, for those of you close by, your amazing help! My mom had the boys the majority of the time (although Aunt Megan took them the first night so my mom could be at the hospital during surgery) and Grandma received tremendous amounts of help. Dinner was brought in every night, people chauffered Nate and Drew to preschool, our walks were shoveled, countless plates of cookies were provided and consumed, and many other acts of service were given to our family (some that I'm sure I don't even know about!) We are so thankful, and we know we are so blessed to live in a place where neighbors and friends reach out and serve one another. We truly have no idea how we will ever repay you - but we thank you from the bottom of our hearts!

Slowly Stabilizing and out of ICU!

This morning, when Warren and I went in to see Matt, we learned he had just been moved out of ICU! We were pretty thrilled. His sodium stayed in normal ranges and was slowly coming up all night. Woooo-Hooooooo! So, he is back on 'the floor' and seems to be resting well and feeling well. His confusion is a lot better, as is his short term memory.
Right now, we are waiting for him to stabilize while taking his DDAVP. They've been holding that because it further concentrates the urine, and would make the low sodium problem worse. He tends to run high, though, because of his DI, so we need to make sure he is stable on the medications he will be receiving daily at home. He just got his first dose a little while ago, so we'll see what happens. Hopefully all goes well, his body adjusts, and we can go HOME. It feels frusterating and hopeless to be stuck here. I have this child who seems like he feels well, looks well, and isn't hooked up to any moniters or anything. We're anxious to get out of here (not that the cafeteria food isn't great............). ;-)
This morning Primary Children's had an AWESOME little concert in the foyer. Jericho Road performed. It was really incredible to hear their uplifting harmonies in such an intimate setting. We are totally buying some of their music! Afterwards, we went up and met them. Matt really enjoyed their songs - especially Homeless from the Forgotten Carols. That's one of his favorite songs and he was thrilled to hear it performed so well.
Here is a photo of Matt with the group.

Change in plans, disappointment, backslide.

Two days ago, when I wrote my previous post, Matt was FABULOUS. Yesterday......not so much. He was tired and lethargic and, most frightening of all, really confused. He couldn't remember what time of day it was when he woke up, ordering Ramen Noodles at 8:00 a.m. because he thought it was evening. He complained of a more severe headache than he had previously, and just wanted to sleep. Neurosurgery ordered a C/T scan right away because of the confusion and headache and that came back perfect, so it wasn't a problem with excess spinal fluid. That was a relief! Once we started getting labs back, it became clear what the problem was. Matt's sodium was falling - and falling quickly. In the PICU and the first little while on the 'floor' (hospital lingo for a regular hospital room), his sodium was running higher than normal. It's common for kids to have low sodium after brain surgery, and Matt's situation is complicated because of his DI, which makes his sodium difficult to regulate anyhow.

Yesterday evening, when his sodium plummeted 10 points in 4 hours - and fell to a dangerous 124, he was re-admitted to the PICU. He spent last night there and his sodium seems to be stabilizing. It is still quite low, but hasn't fallen anymore. Hopefully he will get moved back to a regular room soon!

In light of this change, and even before the sodium began falling so dangerously low, Dr.Walker had 2nd thoughts about going in for another resection so soon. He decided he wanted Matt to be 100% stable with his DI before another surgery happens. So, it looks like we'll be going back home for Christmas, and having another surgery a little later. Dr.Walker was thinking January. We'll see what actually happens! We know another craniotomy is in Matt's future, but the specifics will need to be worked out. Once again, we appreciate Dr.Walkers caution in regards to our son. It is disappointing to go home without completely getting rid of the tumor, but we will try to be patient! Good things come to those who wait!

Amazing Matthew! Fourth day post-op.

Matt is in a regular room now, and we totally scored! This room has a private bathroom (the ones across the hall are shared), a rocking chair, AND a COUCH that sort of unfolds and creates a bed. It's a big improvement over the sleeper chairs we're used to!:-) Matt has had a great day of resting. He only requested pain medication about 30 minutes ago. I am amazed, once again, at how quickly he recovers from brain surgery, and how little pain is involved. For both dinner last night and lunch this afternoon, he has requested that we take him down to the cafeteria. I think it does him good to get out of his hospital room. Dr.Walker also gave the order to remove his 'brain drain' i.e. External Ventricular Drain, since it's not really putting anything out.
Here's a picture of him about 48 hours after surgery. He's still in ICU here. The amazing blanket was made by our friend in Naperville, Lisa. It's cotton on one side, and minkee on the other, machine quilted with two coordinating fabrics around the edges. Matt sleeps with it every night and I love that it's so cozy and comforting while he's here in the hospital.

Dr.Walker has been in several times to see us to discuss Matt's next surgery. It is going to be on Wednesday, rather than Tuesday. We talked a lot about the potential side effects, and the fact that Dr.Walker doesn't feel like he is going to be able to get out every last bit of tumor. This part of the tumor surrounds a very vascular area that controls large motor function - specifically the legs and feet. Dr.Walker is going to be very cautious around that area, and feels like there will almost certainly be tumor left there. Hopefully, radiation will take care of the rest! for this surgery, he is going to go right through the bony part of Matt's forehead and between the hemispheres of the brain. Dr.Walker says he won't even have to go through any brain tissue since, apparently, the hemispheres will separate during surgery. I think that's AMAZING!

Scans

This is the working of the PICU. Matt was scheduled for scans, 'sometime this morning.' Sometime this morning is actually 1:00 in the afternoon. We finally go down to scans around 1:30. Then, we didn't hear results from Dr.Walker until about 4:30. It's as 'in the morning' as the PICU ever gets! :-) Not that I'm complaining - just explaining so you all don't think I've abandoned you.

I can't believe how much tumor Dr.Walker was able to remove. He really did get out all he could see and cleared out all the most sensitive parts. We feel so incredibly blessed that this was able to happen - and that Matt seems fine! He's still been sleeping a lot. The surgery was right in the hypothalamus and so Dr.Walker feels the extra tiredness is to be expected. Matt has been up and talking. He has enjoyed sitting up and ate dinner (chocolate ice cream first, vegetable soup with crackers second).

Now for the sort of bad/surprising news. Because of the angle Dr.Walker was at during Matt's surgery, there was a portion of tumor that he could not see. You can totally look at the direction he came in, and see why this particular small section would have been invisible. Dr.Walker removed all the difficult parts to remove - in the most sensitive sections of the brain, and he thinks the remaining tumor would be much easier. He wants to go back in...... on Tuesday. He will use the same incision - made just a little larger/longer. It seems like the thing to do. I can't see any advantage to waiting until Matt is all the way healed and back in school to do this again. Dr.Walker likes the idea of the incision being still new and everything being fresh and easier to open up again. I can't even imagine how giddy I will feel knowing Matt is TUMOR FREE! So, this afternoon presented another unexpected turn of events. We'll spend the weekend thinking about this and praying that we are making the right decision for Matt. Dr.Walker will come back on Monday, having discussed things with the other neurosurgeons in his group, and having thought about things, as well. But, it sounded pretty much like another craniotomy will be happening on Tuesday! Oh, and by the way, we explained things to Matt and told him that Dr.Walker wanted to perform another craniotomy. Matt didn't even hesitate to tell us that he agreed. He is very excited, as well, to be able to say he's tumor free!

We heard WORDS!

We are currently in the PICU with a very sleepy Matthew. He's not fully awake from the anesthesia. We have had some encouraging moments, though. He has opened his eyes several times, changed position's while he was sleeping, spit out his manual airway thing, squeezed the nurses fingers with his hands, and pushed against her hands with his feet. The best part, though, was just a moment ago when he said, "I need to go to the bathroom." We're pretty stoked!

This is a bit different than what we've come to expect from our previous two brain surgery experiences. Matt's been awake after every surgery - out of it, but awake. Last time, when I walked in and rubbed his arm and asked him how he was, he replied, "I feel like crud!" This time he is much more deeply asleep and less responsive. Hopefully that means he is comfortable and that the rest is helping his body recover.

I'll update in the morning, probably after his MRI.

We talked to Dr.Walker

3:20 - Dr.Walker just came in to talk to us. He felt very optimistic about the surgery and was able to get out all the tumor he could see! It's hard to explain how cautiously elated we feel at this moment! Dr.Walker said the tumor was farther reaching than he had realized. It went all the way around the 3rd ventricle and down to the very bottom of Matt's brain. Matt will have an MRI tomorrow morning and we can see for sure how much (if any!) of the tumor remains. We're still pretty nervous, as Matt hasn't woken up yet. This means Dr.Walker hasn't performed any neurologic function tests. I can't wait to see him and see for myself how he is doing!

Updates.......

12:00 - The nurse said they had just started. We're not sure exactly what that meant. :-) Ordinarily we receive calls saying they've just opened, then that they've just reached the tumor, then that they're just closing. Based on the next call, we think she meant they had just started the resection (rather than just opening)!

2:45 - We hadn't received any updates, so we had the waiting room nurses call for an update. The nurse said they were just starting to close and Matt should be moved to the PICU in about an hour. She said he had remained very stable throughout the surgery. All of his vital signs had been excellent and he hadn't needed any blood products - all good things! Now we just wait to speak with Dr.Walker and find out exactly how he felt about everything and how much tumor he thinks he was able to remove!

He's in......... now the waiting begins.

We arrived at the hospital at 7:45 this morning (after sleeping at Carolyn's house in Layton last night). Matt's surgery was scheduled for 9:15. We got word shortly after sitting down in the pre-surgery waiting area that they were running a bit late. They finally came in to talke to us, and took him into the OR at about 10:30.

I wanted to thank everyone for putting Matthew on the Temple prayer rolls. I believe in the power of prayer. I know that special blessings come when individuals are prayed for in the Temple. I also believe that it really only takes one temple to receive those blessings! However, it gave Matthew so much comfort and strength when we looked over all the Temples prayer rolls that was on. He got teary when he realized how far reaching his support system really is. Thank you again for your support and love!

I will update again as we receive the telephone updates over the next several hours while he is in surgery!

Request......

Matthew is feeling *really* anxious about his upcoming surgery. Truthfully, I am too, and I think it's rubbing off on him! There are SO MANY unknowns, and so many things that could go wrong - I can't even begin to list all of the potential side effects. I am trying to remain positive. Matt has done remarkably well with his previous two surgeries and has NO side effects from them. Everyone is thrilled with our overwhelmingly positive outcomes. This time feels a little different, though. Dr.Walker is going in for the express purpose of removing as much tumor as he can. He is going in deeper than he has before, and will be closer to those ultra-sensitive parts of Matthew's brain. I was just thinking how cool it would be if we could get Matt's name on as many Temple prayer rolls as possible. I think it would really buoy him up to see that so many people at so many Temples were praying for him multiple times each day. If you feel so inclined, it would mean a lot to our family if you would consider putting him on your local Temple's prayer roll. Then, leave a quick comment letting us know which Temple's prayer roll he is on.

Thank you so much for helping, supporting, and loving Matthew and our family!
Oh, and for those of you who may not know us well, the name for the prayer roll is Matthew Goodworth.

P.S. We've had some questions about exactly where Matthew's tumor is located. If you were able to get right to the center of his brain - about the level of his nose and ears, that's where it is. If you could slice Matt's brain into quarters, the tumor would be right where the 4 pieces would meet.

A tribute to a great Christmas Story!

We bought ourselves our own 'Major Award'! WE think it's hysterical and have a perfect window to display our very own 'leg lamp' (which lives in Warren's office when it's not the holidays.)

News, news, news, lots of brand new news!

Today was a big day for Matt. He had scans, then a visit to Oncology, then a visit with his Neurosurgeon.

While Matt was in scans, Warren and I started to panic because it was taking a much longer time than usual. Warren went back to check on him and learned that when they had injected the contrast, it had made Matt sick and he had thrown up all over. :-( Poor boy! That's never happened before, so we hadn't come prepared with a change of clothes or anything. They found him some scrubs and he wore them the rest of the day. He looked so cute and everyone kept making Doogie Hauser jokes (which of course, he didn't get since he's only 10.........) He was embarrassed that he was sick and he was embarrassed to be wearing the scrubs but we made a joke out of it. I told him to just tell people that he had just graduated from Harvard medical school and was just starting his residency. :-) This seemed to cheer him up and by the end of the afternoon he was strutting around in true doctor fashion!

Oncology was pretty uneventful. We learned that the tumor had maybe grown a bit, but nothing huge. Dr. Lemons thought we would be fine to keep on his Temodar for the next 3 months and then re-scan.

We then went to Neurosurgery to see Dr.Walker. He did not like the look of the scans, at all. He said it doesn't seem like the chemo is doing anything and he is recommending another craniotomy to see if he can get more of the tumor out. He was really encouraged with how well Matt did with his last 2 craniotomy's and felt good about the amount of tumor he was able to remove. He wants to try again and showed us on the scans how he would go in and where he thought he could remove more tumor. We trust Dr.Walker. He has always seemed to be very familiar with Matt's case, and has a knack for being conservative at the right moments and for being aggressive at the right moments. I agree with his recommendation, but am so nervous about another major brain surgery. We've played the brain surgery lottery twice and WON! Both of his surgeries have had great outcomes with minimal ill side effects. It feels like such a gamble to go in again! But....... the risk of not going in is risking this tumor continuing to grow, affecting his quality of life, and always being there. I guess I feel like the risk of surgery is worth the possibility of the tumor being removed, or even partially removed.

Dr. Walker did give us the option of waiting until summer with scans every 6 weeks in the meantime. This scenario didn't work as well for me because, well, I'm having a baby this summer! I know, I know, Jake was our caboose - and he WAS, but apparently there is another sweet baby up there for our family. I promise you - none of you are more surprised than Warren and I! Luckily, we think babies are always the good kind of surprises.

So, summer was less than convenient for a craniotomy. Oh, also, it looks like we'll be going back to the whole radiation idea. So, not only did I need to figure out the best time for my son to have a brain surgery, I needed to figure out when, afterwards, would be the most convenient for us to be in SLC everyday for 6 weeks for radiation. Again, summer is much harder because my children do not have as much going on. People are on vacation and it's just harder to find someone to fill my shoes during the vast summer months.

Dr.Walker gave us several dates to choose from, and I think we've decided to go with December 11th (yes, yes, I know that's only 2.5 weeks away). This way, Matt only has to miss one week of school - and it's the week before Christmas which is always less than productive, anyhow. Then he's got almost 4 weeks to recover and rest before going back to school in January. Just in time, probably, to be gone for 6 weeks of radiation............

As always, we're worried about making the right decisions for Matt. It's such a fine line of allowing a child his childhood, and fighting for him to have an adulthood. We are blessed to have such wonderful doctors to help guide us. I don't feel pressured to do one thing over another. The doctors do make their recommendations (this is their job, after all!) but ultimately we have a lot of say in the matter. We're still finalizing this next step in our minds. We are praying and thinking and researching, but so far it feels like the right decision and a step in the right direction for Matt.

Andrew.......

Time: 4:45 p.m.
Place: My Kitchen

Matt is sitting at the table doing his homework. He asks if he can have a mini tootsie pop. I tell him, "yes".

Andrew overhears this exchange and is quick to ask, "can I have one, too?" Since Drew and Nate are home sick today, they have indulged in several little lollipops. I told him, "No, you already had some today."

Drew, with a pouting lip says, "but I didn't have any RIGHT NOW!" :-)

Very true, indeed.

The Big Oh-One! :-)

Today my sweet newborn baby turned one year old - how did that happen?!? We celebrated this milestone yesterday, as Warren is traveling this week and had to leave right after church today. We had the easiest, most laid-back party ever. It was a real treat, as we have never lived near family for any child's first birthday party. It was so fun to get together with all the people who love Jake most. We ordered hot sub sandwiches from this yummy place called 'Papa Kelsey's'. If you are ever in Logan, check it out! The steak and everything sub is pretty amazing! Along with the sandwiches, I ordered a large pizza for the children, a party pack of individual bags of chips, and drinks. It was a seriously low-key, but delicious party! I was pretty proud of Jake's cake. Don't look too close, as it's pretty tilty, the layers were too thin since I didn't make quite enough cake batter, and had little finger swipes out of the front (hmmmmmmm, I wonder who could have done that???) It was a homemade yellow cake with chocolate buttercream icing - yum!

Here is Jake enjoying his birthday cake. He was so funny! We expected him to smoosh the cake around with his fingers, but nope! He just picked up the hunk of cake and began chowing down. Then he cried when it was gone. Apparently chocolate is a hit with him!

I had to laugh when, during the present opening, Jake became obsessed with this little balloon my dad had purchased to put on top of Jake's gift. This is him making a beeline for the gift that had the balloon attached.

And here he is, successful in his attempt to get everyone to do everything he wants! Will was so sweet during Jake's party. He really tried hard to make sure it was a special day for Jake. I'm loving Will's hat here. I'm not sure when he put on the dress up hat, but it sort of makes the moment!

Every single photo I got of Jake the whole rest of the day, he was holding that silly balloon! I just had to laugh at what a classic 'one-year-old' moment it was! Luckily, there were many children there who were more than happy to 'help' Jake open his gifts and then admire and play with the toys, since he couldn't be bothered with any of it! :-)

Really sad day......

Today Matt and I attended the funeral for Marcus. It was a beautiful service. There were hundreds of people in attendance, many of them high school students. Marcus played in the marching band for his high school, and I lost it right before the service when the entire marching band marched in dressed in their full uniforms. To see such solidarity and support from these special teenagers was really moving. After the service the band lined up in two rows to make a path and the casket was carried between the rows, then the family followed. Although it was sad, the service was very uplifting. In our LDS faith, we believe that life on earth is a small part of our eternal life, that it is a time for testing and trial. We believe that when we die we will be able to see our loved ones again. This doctrine was repeated many times throughout the service and it brought me comfort. The most difficult part of the day was seeing Karen. My heart was breaking for her. To watch your child suffer and then accept a reality that children shouldn't have to face must have been so difficult. It makes me so sad and terrified that brain cancer is taking so many children. Since Matt's diagnoses, I have known of 2 other children in this valley with brain cancer. They are both gone now....... Matt's diagnoses is slightly more positive. He has a grade 3 Pilomyxoid Astrocytoma rather than a grade 4 Anaplastic Astrocytoma, but I still get scared, and I still think this awful disease shouldn't be taking our children away from us. Today was a somber day of reflection.

Prayer Request!

Please say a prayer for my friend, Karen, and her son Marcus and their family. I mentioned that Marcus had a recurrence of his cancer a few posts back, and he is failing fast. I feel so heartsick for their family. I've met Karen several times (we both live in Cache Valley), and she has been a source of strength and support to me. They need prayers of comfort during this time!

I can't believe Jake is nearly one - and other stuff!

Today Matt had an Oncology clinic visit. It was just a check up and resulted in nothing terribly exciting. His counts look good. He always looks and acts as healthy as a horse - particularly when you're comparing him with some of the other kids in oncology! We always feel incredibly blessed with Matt's relative health when we are there. Carolyn came with us and it was wonderful to have an extra set of hands. Jake was a little tired and cranky so it was so helpful when she took him for a little walk so we could visit with the doctor.
After leaving the hospital we went to Crown Burger (mmmmmmmmm, Crown Burger.......) for lunch and then I had scheduled Jake to have his photos taken. Being the slacker mom that I am, Jake has never had professional studio photos taken. Now, it's not quite fair, since we've had Diana living with us and she takes some AMAZING photos of him all the time, so he hasn't been totally neglected on the photo front! Anyhow, my cousins wife works for Kiddie Kandids and so I made an appointment with her. My little man looks so grown up!


This photo is one of my favorites because it so perfectly captures Jake with his 'magic bunny'. I'm sure I've mentioned Jake's 'lovey' on here before. I found this bunny at the store and he fussed until I handed it to him. As soon as I let him hold it, he put it up to his face, put his thumb in his mouth and became the happiest, most content baby on the planet. Hence the name, 'magic bunny!' I wanted to capture the love Jake has for this soft little toy, and I think this photo comes pretty close!


Lastly, on a whim, I threw in Jake's Halloween costume. I am so glad I did! I actually bought a large 8x10 of this picture that I plan on framing and putting out each year. He is a skunk (if you couldn't tell), and on the bum of the skunk are the words, "Little Stinker" that you can see when he crawls around. He is so CUTE!

See, maybe we WOULD have cute girls!

Diana has a large collection of wigs that she brings out at Halloween. My boys love putting them on. There's something about a wig that really turns you into someone else. In Nate-a-lina and Drew-n-fer's case, it turns you into GIRLS! :-)

My weakness (well, one of them........)

Is there anything on the planet more fantastically indulgent than a fine hotel? Warren and I have had the opportunity to stay at some pretty amazing places. Right now we are at the Four Seasons in Chicago. The linens are sumptous, the service is amazing, and without our children, we are enjoying ourselves immensely! In fact, they 'upgraded' us to a 'residence'. We are in a Four Seasons apartment. It has a large living area, full dining room, and a kitchen along with a large bedroom. We're feeling pretty spoiled!

Lobby of the Four Seasons in Chicago - oooooh la la!


Some other wonderful places we've stayed:
The Intercontinental, also in Chicago. We often stay here when we visit Chicago. The pool is spectacular!


The Swisshotel in Boston was the beginning of the end for me. Warren and I 'Pricelined' a hotel and ended up with a wonderful price for the Swissotel. I was so comfortable in that room and I think I enjoyed it a little bit too much! Before this experience, I was perfectly happy in a Motel6 and I figured a hotel was just a place to sleep when you couldn't be home. Now I know, though, that a stay at a fine hotel can fully rejuvinate me.

For our 10 year anniversary we stayed at The Boulders in Arizona. This resort has these darling little individual cabin type rooms called 'casitas.' They are open and airy and each has a real wood fireplace. One of my favorite memories of our trip was waking up early and sitting out on our own private little balcony, wrapped up in the warm blanket available in our room, reading the newspaper and drinking a cup of cocoa - Heavenly!



Our very favorite hotel is the Grand America in Salt Lake. When Matt was sick, after 10 full nights staying at the hospital with him, my mom talked Warren and I into taking a night away. We booked a room at the Little America, but they were full so they moved us over to the Grand. It is THE nicest hotel I have ever stayed at! The bathroom was all marble, the furniture was beautiful and comfortable, the bed was heavenly. We even got room service that night and the food was so good.


So, now you know my weakness! I enjoy being pampered at a wonderful luxury hotel. It is so fun!

Sweet prayers.

I am so thankful for the faith and steadfastness that I see everyday in my little boys. They continually pray for Matthew. Every morning, mealtime, and evening, whoever is praying asks that Matt can 'feel better' and that his tumor can go away. Last night Will was offering the prayer and he asked that Matt could feel better. Then he went on to ask, in the sweetest and most humble little voice, if Heavenly Father could help Matt's tumor to shrink and asked that, "it might shrink and shrink and get so tiny that it is just gone." That is what we all hope for, stated so eloquently by my barely 7 year old. I believe that the faith of my children is necessary for me to maintain my faith. They teach me lessons everyday. I love them all so much!

Unreasonable people - or good reasons not to fly FRONTIER AIRLINES!

Warren travels quite a bit for his work, and I think he's a pretty savvy traveller. Today he had an experience that was just horrendous! He was supposed to fly out of Midway airport at 8:00 p.m. on FRONTIER AIRLINES. He arrived and attempted to check-in. Apparently, though, he was only 38 minutes early for his flight. FRONTIER's policy is that you must check in 45 minutes prior to your scheduled departure time. Warren was not checking any bags and there was no line for security (and the recording over the airport intercom kept telling travellers to be sure to arrive at their gate at least 20 minutes prior to departure........). He was plenty early - I'm not sure he ever arrives any earlier, but he usually doesn't fly FRONTIER. To top it off, they wouldn't book him on a flight tomorrow unless he paid a $150 change fee plus the difference in the cost of the ticket tomorrow - and there were no flights in the morning. He was treated rudely at the desk by a girl who kept insisting that he should arrive at least 2 hours early for any flight. Then he called them and was even more horrified at how rude they were on the telephone. Apparently, to fly stand-by, you must fly on the same day your ticket is scheduled........ and since Warren was on the last flight of the day they won't let him fly stand-by tomorrow. So, he finally found a flight with Southwest that leaves early tomorrow morning. For only $400, he gets to come home! Lastly, the hotels at Midway airport are all completely booked. He even called the travel agent associated with his firm and they confirmed that there are no hotels at Midway tonight. Apparently, they are full of travellers who attempted, and failed, to fly FRONTIER. I guess he's going to tuck in for the night at the airport. It doesn't seem worth it for him to go all the way back into the city (to sleep on the floor of his office), only to turn around and come back at 4:30 tomorrow morning.

We flew FRONTIER on our last trip to Chicago and had a 4 hour delay (getting us into the airport at 2:00 a.m......... with 5 children), but that was weather related, so I guess understandable (even though other airlines were flying into Denver). Then, on the way back, we tried to change our tickets to extend our trip a day with no success that cost less than $1800.

Between these two experiences, I don't think we will be booking with FRONTIER ever again, even if they are the cheapest!

My apologies to Janiel and Steve for this rant! Steve is our neighbor and a Frontier pilot, but we hear he has nothing to do with the policies or procedures, so we hope he won't be offended!

Now you can see for youself!

We have been wanting to post some MRI pictures from Matt's recent surgery. It has been a bit of a challenge to get all of his MRI's onto a CD. The ladies at the imaging department are fantastic, but I'm not sure they are asked very often to put as many MRI's as Matt's had on a CD. It took us two tries of going in there before we had the scans we needed!

This scan is from the first part of June. After Dr.Walker (the Neurosurgeon) saw these, he felt pretty strongly that we needed to drain the cystic portion of Matt's tumor. It's the big balloon looking portion on the top left of the tumor. You can see how this cyst could make judging the size of the actual tumor a little difficult! The cyst would fill and empty with fluid, constantly changing, and creating quite the challenge for the neuro-radiologists! Also, even though the cyst wasn't as dangerous as the tumor, if it gets too big, it can block ventricles and cause nasty symptoms, as well.



This is the MRI that was just done last week. I believe that why we were so ecstatic is pretty obvious! Even though the surgery turned into more (much more!) than a simple reservoir insertion and draining, the amount of tumor and cyst that was removed is remarkable and it was SO worth it! HOORAY FOR MODERN MEDICINE!!!

Wonderful Will!

Today, Will brought this assignment home. I thought it was so cute! He is becoming more excited about school - becoming a fluent reader was the key. Now he loves to read and it's helping him feel more confident in school. I love that one of his describing words for himself was intelligent - and love the way he spelled it even more!

What a great day!

For the past 8 weeks, our family has been in 'denial' mode. With Matthew's break from treatment, it's been easy and wonderful to just pretend our life is 'normal'. Without constant appointments, MRI's, and chemotherapy, we haven't talked a lot about the whole cancer/brain tumor thing. We did fish, canoe, swim, hike, play, have 4 birthday parties, vacation in Chicago, begin school, and otherwise fully enjoy the rest of our summer.

Monday afternoon we started up again with a nice refreshing dose of reality. Matt had a follow-up MRI at 7:00 Monday night (really, our appointment was at 7:00p.m. - isn't that weird?!?) Then, Monday morning he had his MRI of his brain, followed by a visit to Oncology, and finished up with a visit to his Neurosurgeon. We had an overwhelmingly positive day. First, the MRI of his brain showed the tumor was a bit smaller than it had been immediately after surgery. This, apparently, is because his brain was so swollen the day after surgery. Secondly (and this is HUGE, so brace yourselves), there were NO TUMORS IN HIS SPINE!!!!! We feel like this is a true miracle. His spine has shown marginal improvement with each spinal MRI, but to say there are no tumors is just amazing. Perhaps they were just the residual blood from when his tumor initially bled, perhaps the chemo really attacked them, but whatever they were, they are gone now! The report came back saying something about 'fatty tissue in the bone marrow' that is typical after a patient receives radiation treatment........ but Matt's never had radiation. We are so grateful for this amazing change. Lastly, his Neurosurgeon was very pleased with how well he is doing. We are so very lucky that with the size and location of Matt's tumor, coupled with 2 extremely invasive surgeries, Matt has virtually no side-effects. Some common side effects might be extreme weakness in one side, seizures, foot drop, personality changes, cognitive difficulties, etc..... Matt has none of that and our Neurosurgeon was really happy - as are we.

We know we are so blessed to be at a current 'up' in our roller coaster ride. On Monday, we learned that a friend (Karen) just hit a 'down' with her son Marcus. After a year of being 'cancer free', his tumor has returned with a vengeance, and is now tumorS. So, even in our happiness, we are sad for children who are backsliding. This disease is so awful. The ups and downs take a tremendous toll on children and families. So, as you pray and are thankful for Matt, please remember to pray and bless Marcus and his family as they continue another really difficult part of this journey.

Summertime!

I sort of lost my camera for awhile, so I haven't posted any pictures in ages! When I found it, I had several hundred photos of some of the fun things we've done this summer. This montage is several things we've done. First, Warren, Aspen, and the boys went jeeping one Saturday morning over Monte Cristo (between Cache Valley and Eden). Then, Warren and Will went on a long, hard hike up to the Wind caves in Logan canyon. The whole family hiked the short and lovely Limber Pine trail at the summit of Logan canyon, and lastly, we took a trip up into Bear Lake and spent a day hiking in Minnetonka cave. The cave was incredible! Nine 'rooms' all very different and very cool.


We are so happy that Matt has been able to participate in such fun activities this summer. He has kept pace with everyone and isn't having a bit of pain or complication. He feels wonderful. We are going on vacation to Chicago next week, and then school starts, and then the next week we have the appointment for Matt's MRI and our big appointment to figure out the next step in this journey. As for now, we are just enjoying the normalcy of our summer!

Photo and video editing at www.OneTrueMedia.com

Morphing!

Thanks to my cousin, Karrianne for this celebrity morphing thing! I have wasted too much time on it this morning. I thought it especially interesting that Nate and Drew didn't even have ONE common match. Since they are identical twins, I thought they would at least have some features in common........ :-)
Maybe someday I'll be brave and post the morphs for Warren and I - especially the one of Warren morphing into Whoopi Goldberg - it's great!

Nate

MyHeritage: Family trees - Genealogy - Celebrities

Drew

MyHeritage: Celebrity Morph - Genealogy software - Geneology

Matt

MyHeritage: Family trees - Genealogy - Celebrities

Will

MyHeritage: Celebrity Morph - Blank family tree - Roots

Jake

MyHeritage: Celebrity Morph - Pedigree charts - Free genealogy

Quick update.

Dr. Lemons (Matt's oncologist) called today. I wonder if doctors know how much it means to parents when we receive calls at home from them? When any of our doctor's call us personally, they get HUGE POINTS in my book! Anyhow, we talked about Matt's surgery and about 'the plan'. At the next tumor board, Dr.Lemons will present Matt's case and they will decide on chemotherapy agents and discuss radiation. Dr.Walker (the neurosurgeon) said it looked like the chemo was working (YEA!) since the tumor had pulled away from the ventricles and seemed more solid than it had last year. For this reason, I like the thought of Matt remaining on chemotherapy. However, which chemo has been working? He was on Temodar for 6 months and has only had 2 rounds of PCV..... It seems much more likely that the Temodar was the one affecting his tumor. I think that some kids are on PCVT (so Procarbazine, CCNU, Vincristine, and Temodar all at the same time). We'll just have to be patient and see what they recommend!

So, in about 4 weeks we are going in for another MRI to get a baseline of the tumor. This time frame gives any swelling a chance to go down, so we can get a true look at his brain. At that time we will begin chemotherapy again. I am quite excited, though, because this break means Matt gets a gift....... a whole month of SUMMER without worrying about treatments or trips to the hospital. Wooo-Hooo!

Matt is still feeling great. He had labs drawn today and everything was perfect. He didn't want to nap today, and he didn't even take a Tylenol! He insists there is no pain and based on his behavior, I really believe him.

More Blessings!

Yet another miracle this week! Yesterday morning, they let Matt go home. He is doing wonderfully. We were able to help him shower on Saturday - isn't it amazing how much better you feel when you are clean?!? For his last Craniotomy we requested they shave his entire head. It was very convenient to keep his incision clean. This time we sort of were thrown into the whole major surgery thing rather quickly, so he kept his hair. It was so SKUNKY! They use this gunk to slick the hair away form the incision during surgery, plus they clean the site well with iodine, plus they put numbing cream on the drain site, plus he had 2 IV's in his head during surgery, plus he had several circles shaved off his head for the 'markers'. His hair was disgusting! It was so nice to finally wash everything out (very gently, of course!) When we rinsed it the first time, the water was rust colored from all the crud in his hair - YUCK!

That was a little tangent - sorry! So, Saturday Matt really did well. He was up and walking by himself, with no support! He was using the restroom, eating well, and just amazing everyone around him with how well he was feeling. In fact, I bought him a 300 page book the day before his surgery. He read a bit that morning while we were checking into surgery. He read THE REST OF THE BOOK in the 3 other days he was inpatient! On our first walk after surgery, Matt was in a wheelchair and we were taking him out onto the patio for some fresh air. Matt was reading his book while we walked the halls and we passed the Neurosurgery team as they were doing their rounds. They were all shocked that Matt was reading - it was pretty funny!

So we are home, just letting Matt rest and get better through this week. He is feeling very well and I keep having to force him to lie down and rest. Now we wait to figure out the next step in our 'plan'. Hopefully it will involve continuing chemotherapy since it seems like that is working. Then, maybe, we can keep radiation 'in our pocket' until we absolutely have to use it.

A*M*A*Z*I*N*G!!!!!!!

This morning Matt had his MRI. We are so thrilled that Dr.Walker was able to remove a LOT of his tumor! I don't have a percentage or anything but I did see the scans. The huge balloon looking portion of it is totally gone. The ventricles are all clear, and about half of the white solid tumor is gone, as well. Dr.Walker was, again, just overjoyed. You could tell he was pretty darn thrilled with himself. Today he was excited to see just how much of it was gone and also to see that there was almost no bleeding. Bleeding is one serious complication that we are happy to have avoided, particularly given Matt's history of his tumor bleeding.

So, of course I wondered if it might be possible to do yet another craniotomy on the left side to see if we could get out the other half of the tumor! Dr.Walker didn't dismiss the idea, which I see as positive! Of course we aren't going to do it tomorrow, or anything, but in the future it might be a possibility. Total resection (removal) of the tumor is like a dream I hadn't ever dared to dream. Now the possibiliites for Matt's complete recovery and healing seem endless!

YEA FOR GOOD NEWS!!!!

The best laid plans.......

Today, Matthew was scheduled for a minor (well, relatively minor - I'm not sure any type of brain surgery is minor!) surgical procedure. An Ommaya reservoir was going to be implanted so that the cystic portion of Matt's tumor could be drained. The surgery was scheduled for 1 hour and then we were going to be allowed to go home 24-48 hours after surgery. Warren, Matt, Jake and I headed down to Salt Lake yesterday to meet with the neurosurgeon and also have an oncology clinic visit. We had a nice evening and stayed the night with Carolyn and Lee so we could be to the hospital at 6:30 a.m. this morning.

We arrived at the hospital, Matt had a CT scan and was whisked into surgery rather quickly. We were in the waiting room at 8:30 - which was a first, for sure! We were happy and not surprised when Dr.Walker (our neurosurgeon) showed up around 9:30. We thought the surgery was finished. Well, the news was not exactly what we had anticipated! Apparently, when Dr.Walker went to insert the catheter portion of the reservoir, the cyst collapsed. This was not a dangerous complication or anything, it just meant that the surgery didn't work and that the cyst would continue to fill with fluid and Matt's ventricles would continue to be blocked, putting him at a great risk for hydrocephalus.

Dr. Walker gave us 3 options. We could either end the surgery then, try putting a larger scope in the hole Dr.Walker had already made, or perform a full craniotomy. It was a rush of emotion as we hurriedly weighed the options and ultimately decided that the craniotomy was the thing we would do. Dr. Walker was leaning that way, and I really respect his opinion! He also hoped that we might be able to remove a bit more tumor.

Matthew was in surgery for another SIX hours. Let me tell you that if we had known what today was going to turn out like, we certainly wouldn't have brought our 8 month old baby! Jake is a trooper and an absolute doll, but he doesn't 'do' waiting rooms for hours on end!

When Dr. Walker finally came out after surgery, he was practically beaming. From this different angle (Matt's first incision was right across the front of his head. This new incision begins on the right side of his incision - your left - and continues on to the back of his head, making almost a 90 degree angle with the first incision) Dr. Walker was able to completely remove the cyst, and also remove a large portion of tumor! We were beyond thrilled and Warren said, "I have never felt so happy in this place!" I totally felt the same way! This gives us a large chunk of tumor to send to different pathologists, and hopefully the tumor will be easier to measure without the large cyst making the MRI's difficult to read. Dr. Walker also said that the cyst was much more tumor than it appeared on the MRI. I am so happy they were able to remove so much!

Tomorrow will be an exciting day because Matt has an MRI. We will be able to get a good look at exactly how much of the tumor Dr.Walker was able to remove.

Tonight, Matt is doing well. When we first went into the PICU to see him, I asked him how he felt. He opened his eyes and said with a clear, strong voice, "I feel like crud!" It made me laugh.

So, now we work through our modified plan. Our 1 hour surgery + 1-2 day hospital stay has morphed into a 7 hour surgery + 1-2 days in ICU with 5-8 days in the hospital after that! However, if this surgery resulted in a significant resection, it is totally worth it!

Just Swingin'

Jake's first time in a swing! He was so sweet - making the CUTEST laugh/shriek/giggle sound. He is becoming so much fun!

Too much STUFF!

So, I am feeling a little bit overwhelmed at the amount of updating I have to do on my blog! Summer is in full swing and we've been busy.

*We spent a weekend helping Warren's mother get some stuff cleaned out of her house.

*We went to LAGOON with some friends. The boys loved it and it turned out to be a fantastic time to go.

*Warren's mother got MARRIED!! She was widowed almost 7 years ago and we are so thrilled for her and her new husband. They seem very well matched and very happy.

*We went on a family vacation to Deer Valley. It was just our speed, we hung out together, played board games, saw the Park City sites, ate junk food, swam in the hot tub in our condo, and slept in. It was a successful trip.

*We travelled back to Idaho after the wedding and our Deer Valley trip to be with Warren's mom for her reception.

*Our landscaping contractor finally started our landscaping - a week or two and we will have real live GRASS!

*Matthew and William are currently at 'Camp Hobe' an amazing camp for children with cancer and their siblings (I linked to the page with the video - it's worth a watch!)

*Matt had an MRI and we learned that the solid portion of his tumor appears stable, but the cystic component has grown.

*We received a call from the neurosurgeon's office yesterday, letting us know that the O.R. has been reserved for Matt for next Wednesday (the 25th) We don't know all the details yet, but it looks like Matt will need a shunt inserted to help drain the fluid through his 3rd ventricle.

For having nothing scheduled so far for our summer, it's been pretty full and is almost 1/2 over! How does winter go so slow and summer go SO FAST?!? I will try to post some photos of our adventures soon!

Alli's 'Mama bear' instinct kicks in!

Friday morning, Matt was still terribly exhausted and not eating anything. I called Oncology first thing Friday morning and by Friday afternoon things had been arranged for us to receive supplies (more fluids and anti-nausea meds), and a home health nurse had been assigned to come draw more labs - a BMP (electrolytes). I sort of felt like all this was done to appease me. No one said or did anything to make me feel this way, I suppose, but Matt is on chemotherapy and how did I expect him to feel? Well, the BMP checks sodium, and his sodium was extremely low. That pesky sodium again! Low sodium is a new problem. Usually Matt's problem is high sodium. Oncology called Endocrinology and his Endo. doctor wanted Matt admitted (at Primary's) right away to get him stabilized.
Thankfully, by withholding his DDAVP for one night and not pushing fluids, he was stable by this afternoon. I am upset about several things, though.

1) I am grumpy at myself for not pushing harder when I 'felt' like
something was off. This is the biggest one. My friend Karen encouraged me to push to have him seen. I am always worried, though, about being 'that' parent who thinks she's a doctor and overreacts to things like (gasp) a child feeling crummy while on chemotherapy!

2) I am grumpy at Hem/Onc for not recognizing that in a child with DI
a BMP should be ordered right away if the child is not eating or
drinking and has these types of symptoms.

3) I am grumpy that Hem/Onc isn't familiar enough with my child's
case to catch this - I feel a lot of pressure to be the one to find
things like this, even though I have no medical training!

4) I am grumpy that the doctors don't seem to communicate with one
another at all - I am constantly relaying information from one
department to another, but I am not a doctor. I might be
misunderstanding, I might not remember perfectly what they said. I
feel like this should be their job - I am HIRING them to care for my
child, and I am having a hard time feeling like they are doing a good
job.

5) I am REALLY angry at Hem/Onc because NO ONE, not a resident, not the Nurse Practitioner, not a doctor, not anyone came to examine him while he was inpatient! My husband, while going to get a soda, saw our Endocrinologist chewing out the Oncologist on call. Endo. was very angry that Matt's sodium had gotten so out of control before labs were ordered and he was contacted. The oncologist was right around the corner, but couldn't come check on Matt? Then we get a random instruction from the tech assigned to Matt (so not even the NURSE) who tells us that Matt should take his 'make-up' dose of chemo that he missed the night before. She said that the oncologist said 'the parents will know what to do.' Um, NO, we do not know what to do! Why don't you come in and tell us so we can ask questions and you can examine our child!

I think I am done venting, but I am just so frusterated with this whole process. I wish there was some sort of primer, "How to be the non-insane parent advocate for your child with cancer." Maybe there should be a magazine or something - "Cancer Kids", a magazine for parents of cancer patients! I truly am out of my element here, and I think that doctos forget that this isn't a natural process for parents and I, for one, have no CLUE how to do this 'right'!

Spring Sing

Well, Matt did make it to his 'Spring Sing' yesterday - but just barely! I went to the first part with him and then left to go to Will's first grade program. Warren stayed with Matt. It was HARD for Matt, and hard for us to watch. You could just tell that he didn't feel well, but he had wanted to go so badly. He made it through the program and then bolted to Warren and said, "Dad, can we go home, I don't feel very good". :-(

Today has been the same as the rest of the week. He has been terribly weak and terribly tired. I'm anxious to speak with Oncology tomorrow. He hasn't eaten anything all week and doesn't even have the strength to get out of bed. I've been searching online for ways to help kids cope with chemo, and they all seem to refer to the symptoms we've been seeing for the past 9 months - mild fatigue, food tasting 'off', etc.... He seems much worse than that and I think I'm going to push to have him seen tomorrow. They need to look at him and tell me these symptoms are "normal"!

Further confimation that we shouldn't go to the library!

Matthew has had a really rough couple of days. He has had a stomachache, been nauseated and unbelievably tired. He slept most of yesterday and has done the same today. We've had him on IV fluids to keep him hydrated but other than that he hasn't eaten anything. This morning I was really trying to help him think of something that sounded appetizing. Nothing has sounded good. I finally got him to eat a few spoonfuls of Cheerios, a bite of applesauce, and a teeny bit of plain noodles (his requests!) Oh, he also drank a little bit of Ensure mixed with milk.

This afternoon, he woke up and seemed to feel a bit better. I encouraged him to get up and dressed, hoping that would help him feel even better. He got up and changed and looked so much better I wondered if it would do him good to get out of the house for a few minutes. We decided to go to the library so he could get something to read (see post here, to remember why the library is a bad idea for us). Once inside the library, without any notice, Matthew began vomiting. Since it was so unexpected, he didn't have a chance to get his bag out of his pocket (he keeps a gallon sized Ziploc baggie in his pocket at all times so we are always prepared for this!) He threw up all over the young adult fiction section...... I felt so bad for him! We just left! I did stop at the front desk so I could tell them that he had thrown up. I also tried to explain that he is on chemotherapy so they didn't think I brought my sick kid out! They were so nice and said they would handle everything. Both Matt and I were pretty covered in vomit, but miraculously, the two books I had in my hands were perfectly clean! Once we got home, I hooked him back up to his IV and he went back to sleep. Poor Kid!
It is also the last week of school and while I know that nothing 'important' happens this week, I wish he didn't have to miss all the fun end of year activities. Tomorrow his class is putting on their end of year program and I know he doesn't want to miss it. We will be praying that he feels well enough by tomorrow afternoon to attend the program!

Matt is (sort of) on CNN!!!

With the news of Senator Kennedy's brain tumor, there has been a lot of information on the news about brain tumor's, in general. Right now on CNN's ireport there is a section where you can put stories about brain tumor experiences. I posted one on Matt, and feel a little bit famous! :-)

I think it is important for people to know how frequently brain cancer occurs and that it isn't the hopeless diagnoses all the 'experts' are reporting! I refuse to believe that Matt isn't going to make a full recovery.

http://www.ireport.com/docs/DOC-25302#

Abundance.

I am so thankful for my sweet little boys. I will be so sad when my mother's day gifts no longer consist of paper flowers and struggling little plants in paper cups. My boys give me their gifts with such earnest love and pride, it makes me cry every year. The four older ones each made me surprises at school. Here is a little video of them telling what they did.

When Will brought his wheat grass home Friday, he dropped it. He was just devastated! Luckily, Warren was able to help him salvage the plant and put it all back together. Then, on Mother's day, while Warren was helping organize the boys, Will dropped it two more times. It is truly a miracle that it still looks as good as it does!
And lest you think Jake was left out of the day's festivities, here is a photo proving he was here...... albeit sweetly asleep on Warren's chest.

Can you believe Jake is 6 months old?!?

Jake is cracking us up lately! It is so fun to watch babies personalities emerge. He is six months old today and he does so many things! It's amazing that so much change happens in only a few short months.
Jake now:
*Sits on his own.
*Eats some solid foods.
*Sleeps all night (7pm-7am) and takes 2 awesome naps a day.
*'Talks' to us all. He shrieks with joy which always thrills his big brothers.
*Grabs toys....... and anything else within his reach - we have to be careful!
*Drinks out of a sippy cup.
*Does the 'scooty bug'. This is him arching his back (while lying on his back), then pushing with his legs to scoot across the floor or his crib..... backwards.
*Wears 6-9 month clothes.
*Has two bottom teeth. He is my earliest teether, by far! My other babies didn't begin cutting teeth until 9 months. Jake is very advanced....... :-)
*Smiles at everyone. He is very social and whenever we are out, people can't help but comment on his sunny personality.
*Is very attached to his 'lovey'. It's this little bunny, but the body is this super soft satin on one side/fuzzy on the other little blanket. It's hard to describe! As soon as he sees it, he gets all excited. He reaches for it with his right hand, while his left thumb goes into his mouth. He strokes the soft blanket part of the bunny and holds it close to his face while he falls asleep. Oh, look, I found a link - isn't the internet amazing! Jake's bunny blankie

Here is a video of Jake's new habit. Each time we give him a bite of food, we barely get the spoon out of his mouth when his thumb goes in! It makes a huge mess, but just proves how attached he is becoming to his little thumb!


One more video I can't resist! This is Jake this morning playing with one of his Christmas toys. His brothers are so thrilled with their new, interactive, little brother! Here, you can see Drew helping Jake.

Bathing Beauties

------------------------------Will, Drew, Nate------------------------------

Delay......

On Tuesday, Matt was scheduled to begin his 2nd round of chemotherapy. His home health nurse, Julie, (one of our favorite people) came Monday evening to get his 'counts'. Tuesday morning we received them and his ANC was only 400. Remember, the ANC is the infection fighting cells in the blood. An ANC below 500 means Matt is neutropenic, and his body is less able to fight infection. To begin chemotherapy, his ANC has to be 1,200. When Matt began his first chemotherapy, 10 months ago, we were given the guidelines that ANC below 500 meant he had to remain housebound and no visitors were allowed. When I spoke with the nurse Tuesday morning I said, "so, Matt can't go to school, either, right?" The nurse said that actually he could go! I was surprised by this change in directive and learned that some oncologists will let the kids go to school until their ANC drops below 200! Because Matt's counts should be rising at this point, and because he feels so well, he is allowed to go to school. I also thought it was interesting that the life-threatening infections that can develop in people with compromised immunity almost always come from their own bodies - not other people. So, in other words, Matt's lungs or blood could get infected, simply because he isn't as able to fight the bacteria that naturally occurs in his body.

Very interesting!

I suppose it was a good thing Matt didn't have to miss school this week. They are doing end of level testing and he has been SO EXCITED to be tested. He expressed a lot of concern about missing some of the testing, so this just worked out well. He is such a great kid!

We Need To FIGHT!

The past few weeks I have been struggling to figure out how to express something that's been eating at me.

Children shouldn't get cancer.

We shouldn't have to watch our children suffer from this awful disease. Watching Matt fight, always with a smile and a positive attitude, is the most heart wrenching, devastating experience that I could have ever imagined. Listening to his childlike faith is heartbreaking. He told me the other day that he was glad we had found his tumors. Now that the doctors were taking care of him, as long as he followed their instructions, his tumors would go away and he would be healthy again. How do you explain to a sweet nine year old boy that the tumors will likely not go away, no matter how careful he is, and no matter how good the doctors are? How do your discuss your child's own human mortality and frailty on such a personal level? I am prepared to discuss with my children the fact that everyone will die someday, but how do you talk about this fact with a child who has a life-threatening illness? I believe in miracles, and we pray for one daily. People can live for a long time with stable, low grade brain tumors. But chemotherapy and radiation are not going to completely get rid of Matts cancer. He will be monitored yearly (at least) for the rest of his life.

However, Matt is one of the lucky ones. He has a chance......

When I joined this strange pediatric brain tumor world, I learned of the grand-daddy of all pediatric brain tumors, the diffuse intrinsic pontine glioma or DIPG. Children diagnosed with this, the most deadly pediatric brain cancer, usually don't live longer than 18 months - and it's 18 months of watching your child suffer horribly and deteriorate before your eyes. This video was made by a mother, Christine, about her daughter, Alicia. Christina has started a foundation, you can check our her blog here, and her foundation, onemoreday, here. This video is very difficult to watch, but I believe it is important because awareness is the first step towards a cure.



There is a darling little girl that some of you here in Utah may have heard about on KSL. Her name is Sadie and she has a DIPG. The story on the news piqued my interest, as my ears perk up at the words 'brain tumor'. I went to her website and just crumbled when I heard what her diagnoses is. My heart aches for this family and for the year ahead of them. Of course everyone knows that brain tumors are awful. However, I had no idea exactly how awful they could be. Finding a cure for DIPG could likely translate into cures for many other types of brain cancers. Please help in any way you can. Prayers are wonderful. Donations are also wonderful - much research has yet to be done on pediatric brain tumors! If you are looking for a worthy cause, it's hard to imagine one more profound than this.

-Allison

Round 1 - COMPLETE!

On Wednesday, Matt and I made our last treck to Salt Lake for this round of chemotherapy. He had his 2nd 'push' of Vincristine (meaning, they push it through his line - so it's IV rather than oral). Each time we go to the Hem/Onc clinic, I am startled how someone so sick can look so healthy (especially compared to many of the other children)! He seemed particularly well Wednesday and was just kicked back, playing gameboy when the doctor came over to chat while the nurse administered the chemo.

Now we just wait for side effects! Several weeks ago, the first time Matt received this medication, he had some pretty severe jaw pain and some drooping of his eyelids. Luckily, the side effects were short lived. He needed IV fluids for a few days - the jaw pain made it difficult to eat or drink, but the Monday after his infusion he felt fine again. Vincristine is nasty, toxic, stuff - no wonder it kills cancer! Matt's platelets have started dropping and were at a 45 - he needs a transfusion at 25. Everything else looked pretty good, though. His ANC was still in the normal range, but had dropped pretty dramatically from where he started.

I'm quite anxious for the next round. The first round is always the easiest. It takes 2 or 3 rounds before you get a sense of how the child will handle things. We go back on the 6th of May to start this whole adventure over again. Then, the first part of June will be MRI time again!

-Alli

What I do when I am trying to put off doing the things I really should do!

Make video montages at www.OneTrueMedia.com

Recipes!

Today at our sing-a-long, I made caramel brownies and also a chicken salad that my mom served in croissants. The recipes were requested, so here they are!

Chicken Salad (Mary-lu Nelson)

Blend together in a large bowl:
4 cups diced cooked chicken
2 cups diced celery
1 4oz. jar whole or sliced mushrooms
1/2 cup pecan halves, toasted and coarsely chopped
4 slices fried bacon, crumbled

Mix together and add to chicken mixture:
1 cup mayonnaise
1 cup sour cream
1 1/2 tsp. salt
1 Tb. lemon juice

Toss lightly and chill thoroughly. Serve in croissants, tart shells, cream puffs, etc.

^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^^

Brownies - from my MIL, Carolyn, of course! (these are THE BEST!!!)

Melt together on stovetop:
1 c. melted butter
2 c. sugar
1/3 c. cocoa

Add:
4 eggs, one at a time, beating well after each one

Add:
1 1/2 c. flour
dash salt
1 tsp. vanilla

Stir well. Pour into a greased 9x13 pan. Bake 25 minutes in 350 degree oven. Cool.

To make a large sheet cake pan of brownies, double the recipe.

Frosting:
1/2 stick butter, melted
1/4 cup cocoa
1/4 cup milk or cream
3/4 lb. powdered sugar
1 tsp. vanilla
dash salt

Blend thoroughly.

For caramel brownies (what I made today), put 1/2 of the brownie batter in the 9x13 pan. Bake for 10 minutes, remove from oven and pour 1/2 jar of Mrs.Richardsons butterscotch caramel over the bottom layer. Add the remaining batter on top of the caramel, and bake for 15 more minutes or until a toothpick inserted in the center comes out clean. (I like to do these in a 9x13 pan and add almost the WHOLE bottle of caramel - they are divine!)

For mint brownies, bake brownies as directed and then make a minty layer using powdered sugar, butter, and creme de menthe syrup (Torani is the brand I prefer) until you get a frosting consistency. Frost the brownies with this mint layer, let set and then frost with chocolate frosting. I have also used peppermint Torani's and red food coloring for peppermint brownies around Christmastime.

Good Times with Good Friends

Let Your Light So Shine!
These are my girls!
I believe this was 1994/1995 school year (Back row) Anna, Rachelle, Erin, Jessie, Heidi (Front row) Deanne, Me
Just for the record, we all DID HAVE DATES. We wanted a photo with just the girls, as well as one with our dates. :-)

I will always be grateful for these girls in my life! It's surprisingly comforting to be surrounded by friends who knew me when I was a spazzy, emotional teenager with big hair - they liked me then, and still like me now! They know me completely - the real me, not the current, trying to be a grown-up me . We were together everyday for about 4 years. After singing in a show choir together in 9th grade, we formed our own singing group: Harmonique. The six of us (plus my mom, who devoted countless hours as our accompanist, and Erin who played the bass) kept ourselves quite busy rehearsing new music, practicing old music, and singing at everything from fairs, ward parties, high school choir concerts, seminary, firesides and many MANY sacrament meetings. My mother wrote much of our music - including the song 'Let your light so shine' that we recorded in 1995, and our seminary theme song 'Feast Upon the words of Christ'. We also double dated a lot and were basically inseparable. I owe these girls my high school life - they were such good friends at a time when good friends are essential. I believe that these friends helped shape me into a better person than I could have been without them.

Even now, I count these girls as some of my closest friends. Today we got together and had a good, old-fashioned sing-a-long at my moms house. Rachelle currently lives in Chicago so wasn't in attendance. Also, Erin had to work and so couldn't join us, either. It is especially amazing to me when I realize how many children we have between us - 5 1/2 girls and 17 BOYS! That is 22 (and 1/2) children..... WOW! That idea would have been difficult to wrap my mind around at the time the above photo was taken!

Here we are today singing, 'My Love' (a song my mom wrote). I feel bad you can't really see everyone - wasn't it great of me to stick myself front and center? :-)


Here's a photo of the children - only about HALF of them!


And here are 'the girls' - I don't think we've changed too much in 13 years! :-)

Jakers!

I can't believe little Jake is almost FIVE months old! He is still such a sweetheart - he smiles and giggles almost all day. He sleeps through the night, loves to hang onto toys, and loves to play with his big brother's. Here are some recent pictures of our little sweetie.

I have never had a thumb-sucking baby until Jake. It melts my heart! He readily calms himself by popping his little thumb in his mouth. I love the way his fingers curl around his nose. This blanket is his current favorite - made my our friend Lacey. She also made blankets for Nate and Drew that also were the favorites - she's got the touch!


Taken a few weeks ago. I love this one because it shows off his coloring. He is such a sweet baby!

Here's the other side to our sob story!

Although we have been feeling upset and depressed about the current news regarding Matthew's tumor progression, I thought I would take a moment to reassure you that, in our day to day life, even we have to remind ourselves that anything is wrong!
Matthew is doing and feeling so WELL 95% of the time. Just two weeks ago we took the whole family skiing (well, Jake didn't ski..... and I was there mainly as photographer, but everyone else skied and had a wonderful time)!
This was Matthew's second time skiing this year - he enjoyed this time more than last. The first time he went, he spent the majority of the time on his bottom. This time he was complaining about going, but we finally talked him into it, and by the end he was really enjoying himself.

Here's a video of Matt and Will following their instructor down 'Little Beav'. Will is in the front, in the orange coat, and Matt is in the blue coat.


Will, waiting for his class to begin:


This was sort of a funny moment. Before the day of skiing began, Matt was not very happy about being there! He was whining about wanting to 'go home' or 'just wait in the car'. We finally talked him into skiing, but he was still not happy about it at all. Around the lodge, there is a gentle little slope with benches. We sat the boys on the benches and helped them get all ready for skiing. The other boys made it down the little slope without incident, but Matthew didn't want to slide down. Eventually, we convinced him to 'ski' to us. He started down the little hill and was just howling. He forgot to snowplow and crashed right into Warren - who had braced himself to stop Matthew! We didn't mean to laugh, because Matthew certainly didn't think it was funny, but we couldn't help ourselves - it was hysterical! :-)


Here is a video of Will skiing down the aforementioned slope before Matthew.


Nate, just being cute!


Nate and Drew waiting for their blissfully unaware instructor. At this moment he didn't realize his next several hours would be spent attempting to keep two 4-year olds upright on skis. He did a wonderful job with the boys, but I believe he earned his money!


So, as you now can see, our life is really pretty 'normal' right now. We are doing our best to keep things fun and light and optimistic. I read somewhere (probably my PBT (Pediatric Brain Tumor) message board, where I get LOTS of wisdom from parents who are further along this journey than we are) that there's no point in saving a life if you won't allow the person to LIVE that life. I often want to shelter Matthew and to keep him away from experiences that are challenging for him or where he has the potential to get hurt. However, I have to realize that there will likely be a time when he IS too sick to do these things. I don't need to cut them out during a time when we don't have to! For those of you that don't see Matthew each day, please be reassured that he is busy living and the cancer treatments are only a small part of his full and active life!

Rookie Mistakes

Even though Matt has been on chemotherapy for the past 8 months, our family has gotten quite good at ignoring that fact. Matthew has had NO symptoms to speak of. He still has all his hair, doesn't get terribly tired, and the nausea has been easily kept under control with the Anzemet he uses on days we give the chemo. On Wednesday he started this new chemotherapy (CCNU) and is on a very high dose. We were instructed to give him the anti-nausea meds for two days and then more if needed. He hasn't been too sick. Today, after a fun time at the Discovery Children's Museum in SLC, we decided to stop at Red Robin for dinner. Walking in Matt said, "I feel a little bit sick - I must just be hungry." As I go to sign us in for the wait, I am surprised when my cousin comes up behind me. I'm visiting with her and start looking around for Warren. My cousin tells me he's by the door. I look over and there's Warren frantically waving me over. I walk out the door and Warren informs me that Matthew has just thrown-up. THANKFULLY, Warren was right by Matthew when Matt said again, "I think I'm going to throw-up, but it's okay because I brought a bag." Warren quickly steers him outside and Matt proceeds to throw up in the bag (which I didn't even know he brought!) Unfortunately, the bag had a huge hole in it..... That would have been a classic moment in Red-Robin had Matt proceeded to throw up in that bag in the crowded foyer!
Warren and I loaded the boys back up into the car. We both felt like this was a little message from above saying, "You've been warned........" I know the symptoms that are supposed to hit Matthew eventually will - and I can't help but think that it will be on this aggressive chemotherapy. Now, we just need to make sure that we are prepared to handle those side-effects! Tonight I made Matt several little 'just in case I throw-up bundles' to carry around in his pocket at all times. I just rolled a gallon size Ziploc baggie up tightly and put a small clear rubber band around it. This creates an easily portable bundle with a non-holey bag that can be zipped up and easily tossed in the trash if Matt has to use it.

So, we've learned a lesson about being prepared today! Other parents with children on chemotherapy are probably laughing at us right now because of this Rookie mistake!

As I read back over this post, I can't believe I talked this long about throw-up!

Not good news MRI - SOB!

I can't believe it's been an entire MONTH since I last updated! I suppose we were just basking in our delight at an MRI that proclaimed improvement. This morning we went to Salt Lake assuming the news would remain positive, or at least stable. What we weren't prepared for was this MRI report:

Examination: Brain MRI, without and with intravenous MRI contrast, 25 March 2008, 11:18 a.m.

Comparison: 25 January 2008

History: Primary malignant brain tumor, Pilomyxoid astrocytoma partially resected.

Findings: There has been interval enlargement of the heterogeneous mass that is centered in the suprasellar, anterior inferior interhemispheric, and septum pellucidum. The maximal craniocaudal dimension is 5.8 cm previously measuring 5.3 cm, width is 4.7 cm previously measuring 2.9 cm and AP dimension is 4.1 cm. previously measuring 2.9 cm. I see no evidence of remote CSF tumor spread.

In addition, there is progressive right more so than left lateral ventricular dilation. The third ventricle is unchanged.


Sooooo, in English, we learned that the tumor has grown. In two months it has grown half a cm front to back, and nearly half an inch both in width and top to bottom. The ventricles surrounding the tumor are also more dilated which indicates the spinal fluid might not be draining properly, which means a shunt might be in Matt's future. The good news is the part that says "no evidence of remote CSF tumor spread." Dr. Lemons talked to us about some options. We could begin radiation right away. I am nervous about this option because of the permanent damage that radiation will very likely cause to his endocrine system. The longer we can put it off, the better. I also like the idea of Matt finishing out the school year. Academically, I'm not worried about him, but springtime is the nicest part of the year! I want him to be able to enjoy these last weeks of school - because school defines who he is. Since radiation will be every day, he would not be able to attend school for the remainder of the year. The other option presented to us was a more aggressive chemotherapy regimen. The protocol is a six week cycle in which Matthew would take 3 different drugs. There are certain drugs taken each day for 4 weeks and then a 2 week break. We decided to try the chemotherapy for the hesitations about radiation that I already mentioned. Matthew will start tomorrow on Lomustine (also known as CCNU). We wait one week, and next Wednesday will go back to Primary's for an IV chemotherapy called Vincristine. That same day Matt begins Procarbazine, a pill that he takes at home everyday for 2 weeks. Eight days later there is another dose of Vincristine and then a two week break until the next cycle.

I am so anxious to see how he will handle this chemotherapy. With the previous two types, he has handled everything so well! The carboplatin made him sick, but I think we are much better equipped to deal with this possiblity this time. I have IV anti-nausea medications (3 different types!), as well as IV hydration that I can use if he can't keep food or liquids down. His blood counts have remained in the normal range for the past 8 months - with the exception of the first month, but I am beginning to suspect that was a fluke! Now we are beginning something new and that is always scary. Scarier than the side-effects, though, is the possibility that this chemotherapy will also fail..... I just want something to work so badly!

Good News MRI - YEA!!!!

Today was another day in SLC with Matt for his monthly clinic visit/MRI. Like last time, Matt was able to have his MRI with no sedation. Today he was due for an MRI of his spine only. Doing both brain and spine takes several hours, and is really just too much if he is not sedated. The spinal MRI's take quite a bit longer than a brain alone because they really do 3 MRI's, one of each section of spine. After the scans we went up to Matt's clinic appointment. Dr. Lemons was in to see us quite quickly after he looked at the scans. We were VERY pleased to see that there is improvement in the tumors and seeding of his spine! This is the FIRST MRI that Matt has had where the report said 'slight improvement'. We are beyond thrilled that the chemo seems like it might be doing something. Because of this good news, we are continuing on the Temodar for at least one more cycle. Next month Matt is due for his brain MRI. That will be the more important factor to determine whether the chemo is effective. However, since this MRI showed improvement, we are praying that the brain also shows improvement or at least stability. Matt does so well on the Temodar. It would be a blessing if he could continue with this protocol - at least through the school year. We did discuss other options, which we will begin if the Temodar proves unsuccessful in shrinking the main tumor. We also discussed radiation. The plan has always been to begin radiation sometime this summer, and it sounds like that is still going to happen. We will be making an appointment to meet with the radiation oncologists in the next few months. This will be exciting as we can discuss all the fancy radiation techniques they keep talking about on television (gamma knife, proton beam radiation, etc....). I don't know if any of these will be possible for Matt, but it will be nice to talk to a doctor about them anyhow. So, that was our day. Overall, very encouraging! Thanks for the prayers and positive thoughts!
-Alli

Our View....

This is what Warren and I wake up to each and every morning. I need better photography skills - this photo really doesn't do the scenery justice! This was taken through my bedroom window the other morning.

Ski the Beav!

One of the things that Warren has missed the MOST these past years living away from the mountains has been the lack of skiing. He lived in Park City when he was younger (his dad was Superintendent of schools there), and he grew up skiing a ton. Over the past 10 years, Warren has only been skiing a handful of times, and he has missed it! Last weekend Warren took Will skiing for Will's first time. Will did awesome! He is a kid who was made for speed. Beaver Mountain has a great first time learn to ski program. For only $50, your child gets a lift ticket, ski rental, and 2 hour group lesson. Will came home exhausted and excited - he said he loved skiing! I, personally, want all my boys to love to ski with their dad. I look forward to quietly shopping in a cozy mall while the rest of my family are out freezing their noses off and breaking their legs. I like the idea of me skiing, but everyone else always looks WAY cooler than I ever do while I'm flailing down the mountain on two skinny, slippery sticks! Just so you don't think I'm a party-pooper, I'm also not opposed to sipping hot chocolate and reading a great book while hanging out by the fire in the ski lodge - see, I participate in family activities!

Anyhow, here are some pictures of Will's day (he is in the orange coat).

Learning to get back up after you fall is an important skill (in my experience, the MOST important skill!)



Here he is just skiing down!



In this one, it looks like Will is hanging onto the rope tow, but he is actually cruising down the mountain. If you look, you can see the kid who is getting yanked up the rope tow!

True Love!

Last week at dinner Nate announced, out of the blue, "I'm going to marry Halle in the Temple." I asked him who Halle was and he told me, "my girlfriend." His preschool class picture was nearby because Diana had been working with the boys on their valentines. Nate pointed out his 'girlfriend' in the photo (a darling little girl with a big smile and lots of bows in her hair) and then reiterated, "Yeah, Halle and I are getting married in the Temple..........and I'm ONLY FOUR YEARS OLD!!!!" :-)

Now, I've got this on record and can bring it out just in case, 20 years from now, he actually does marry Halle!

Ironic, no??

Tonight, as I was searching for the dogs shot records in a hutch in our kitchen, I came across a book. This book is from the Naperville public library (where we haven't lived in over a year).

The title of the book:

"The Procrastinator's Handbook,
Mastering the art of doing it now."

I about died laughing!

Such a blessing!

Baby Jake is such a fantastic little guy. He never stops smiling and is extremely interactive with anyone who is holding him. I think he is also my most engaging baby at the youngest age. I especially love it when he wants to 'play'. He will look at me with what can only be described as a coy look. He will look in my eyes and slowly stick out his tongue! When I then stick my tongue out at him he grins - sometimes even laughing out loud. It's amazing to me that he seeks out this type of interactive game at such a young age!

Today we blessed Jake at church. It was absolutely beautiful - it had snowed all night long and everything was covered in white and it was deep! Thankfully our church is close. Grandma Julie bought a darling suit for Jake to wear and he looked perfect. I felt so thankful as my fifth son was given a beautiful blessing by his father. Sometimes I feel overwhelmed at the responsibility of raising five strong, kind, men. I am so thankful to have Warren as a partner in this task. He is a fantastic father and husband.

Here are some pictures from this special day.

HURRY UP...............and wait..........

On Thursday of this week we met with our new oncologist, Dr.Lemons. The good news is that both Matt and I really liked him. He seemed very knowledgeable and, most importantly, spent almost an hour explaining lots of stuff about Matt's tumor. We learned that the tumor is made up of several different tissue types. Parts of it are solid tumor, parts are cystic, parts are more liquid-y, etc.... So, we got a little lesson in viewing scans and reading radiology reports. This was so helpful! Of course, if I had thought about it, Pilomyxoid sort of implies a mixed sort of tumor. I also asked him to reassure me that even though the last report from radiology said 'overall tumor growth' that we weren't concerned! He was concerned, so he wanted Matt to get another MRI ASAP. They couldn't squeeze Matt in for an MRI on Thursday, but had a space Friday afternoon, so we took it. On Friday we drove down again and they did a 'quickie' MRI of his brain, but no spine. Because it was a 'quick' MRI, we decided to let Matt attempt it without sedation. He did great! It was so nice to not have to go through the routine of sedation. He has to go through same-day surgery when sedated, and that place is always a zoo! This was much nicer. The tech came out to speak with us afterwards and he suggested we break the MRI's up into 2 different days (one day brain, one day spine) so Matt wouldn't have to be sedated. I look forward to trying that plan at the next MRI. After the MRI, we went and had lunch in the cafeteria and then went up to oncology to hear the report on the MRI. I was disappointed to learn that we are still not sure the tumor is stabilizing. The neuro-radiologist believes that the tumor is still slowly growing. This is a very difficult thing to tell on Matthew because of the nature of his tumor. Since it is impossible to, say, weigh it to see if it has increased in mass, you just have to tell the best you can through MRI's. With all the different tissues in the tumor, it changes a lot - which can look like it's growing or shrinking, when it's really just a little bit different than it was on the previous MRI. So, the new plan is to send the scans and things back to Dr.Cohen (the doctor at John's Hopkins who did the 2nd opinion) and see if their tumor board has any thoughts. Dr.Lemons was also considering sending the scans and reports to someone he knows at UCLA. Hopefully, with these 3 opinions, we will get a better sense of where to go next.

I also had the chance to talk with the neuro-psychologist who evaluated Matthew several months ago. I've been worried about Matt because we've been seeing some anxiety issues pop up. For instance, Matt is extremely obsessive about his homework. He will tell you 47 million times that his homework needs to be signed. It's like he becomes fixated on certain things and he can't relax about them. The thing that really concerned me, though, was an experience Matt had with Jake. Matt was playing with Jake and was putting his glasses on Jake. Somehow, the glasses poked Jake in the eye. When Matt was telling me what happened, he was very upset and crying. I went in to look at Jake and found no evidence of any injury. Jake was just smiling and cooing and happy to see us. I reassured Matt that Jake was just fine and that he shouldn't worry about it. However, Matt has continued to dwell on this incident, telling everyone what happened, etc.... My mommy 'red flags' were raised when Matt told me that sometimes at school he would be doing his work and suddenly remember what he did to Jake. He said, "mom, I just imagine holding him, and then I accidentally poke him, and then he starts to fall apart in my arms and everything is all bloody." Okay, so that just doesn't sound healthy! I am worried about him feeling anxiety over nothing! After talking to Dr.Colte (the neuro-psychologist) I feel better, though. He thinks that this may be something Matt will get over, as well, as he heals further. We are going to watch him carefully and if things start to get really bad we'll go see a neurologist and also a child psychiatrist who might be able to help him with medication. Dr.Colte didn't think it sounded like an anxiety disorder at this point.

Okay, so I think you are all officially updated on Matt. :-) I'll keep you posted when we find out something from those other doctors!

-Alli

U-TAH STATE, HEY AGGIES ALL THE WAY! GO AGGIES, GO AGGIES HEY HEY HEY!!!

There are reasons parents of boys take their children to sporting events.

1) The game
2) The cheerleaders (girls in sparkly outfits are always a fascination....)
3) Being allowed, even encouraged, to yell as loud as you can
4) Being able to stand on the seats and
5) Riding the shuttle to the Spectrum

Between these 5 main things, a USU basketball game is a winner all the way around! We've gone to games the past few weekends and the boys ask every day if it's 'an Aggie day today?' Here is a video of the boys doing 'the Scotsman' (see what it looks like from the other side of the stadium in the video above) and photos showing what a success this outing is for our family.







Matt and Will



Will cheering after a basket


The boys


The true sign of SUCCESS!!

CoNgRaTuLaTiOnS MaSoN!!!!!!!!!!

We were so thrilled to view Mason's site today and learn that he is officially in remission! (Be sure to click on the link to the fantasic video - it made me cry!) Mason is the sweet toddler who was diagnosed with Leukemia just a week or two before Matthew was diagnosed with a brain tumor. Mason's aunt, uncle, and cousins were friends of ours when we lived in Naperville (in fact, we had a fun day with their children just 2 days before Matt was diagnosed.... I had offered to watch them while Melanie went to SLC to support her sister and nephew - I never dreamt I would be there with my own child days later!) Matthew and Mason were in the ICU at the same time and Warren and I received a lot of support and encouragement from his parents and grandparents.

Matthew summed it up well when he said, "mom, hearing about people who beat their cancer makes me feel so good - like I can beat mine, too." Thank you for being a support and inspiration to us all, Mason!

A little cryin' goes a long, long way......

I don't think it's a secret that I've been a bit frustrated with the Oncologist we're working with. It's not that I don't like Matt's primary doctor, it's just that she is busy with other patients/not available/out of the office/only comes in once a week/on personal leave or other such situations. I *think* there's something going on there, but no one will give us specifics. I really like the doctor we have been meeting with most often, but he has made it clear that he is not calling the shots about Matt's care, and that he isn't a neuro-oncologist. Again, he is a fine, kind man, but we want a specialist who has studied brain tumors and works primarily with children who have brain tumors. Warren and I left Matt's last appointment discouraged with the lack of information, lack of interpretation of Matt's scans, and lack of involvement by this doctor that we are supposed to be trusting to save our son's life. We have been strongly considering seeking a third opinion and even transferring his care to someone else - even though that would involve extensive travel at least once a month.

Anyhow, Matt had his blood counts drawn on Wednesday and yesterday we still had not heard the results. So, I called Oncology and let them know we hadn't heard Matt's numbers. I also gathered my courage and told the guy I was speaking with (who runs the office) a little about my frustrations. I also asked if he could tell me what was going on with Matt's doctor - he couldn't. I started to cry (how embarrassing!) and told him how discouraged I was that I didn't feel Matt had a primary doctor. It feels, to me, like no one is looking out for his best interests and I also told him that Warren and I were considering taking Matt elsewhere for treatment. The office guy said he was going to pass along my message and have the head of Oncology call me back.

A few minutes later I received a call from Dr. Lemons. He is also a neuro-oncologist (which I didn't realize - I thought our first doctor was the only neuro-oncologist on staff). He listened to my concerns, validated my concerns, said we needed to seek a 3rd opinion (this was his suggestion, once he looked over Matt's chart and saw that we had a variation on pathology opinions). I told him how unfortunate I thought it was that Matt had never met with his primary doctor. Long story a little bit shorter, he is going to take over as Matt's primary doctor! We will meet him the first time at January clinic! He said he would go over a lot of details about Matt's scans, diagnoses, and treatment options. I am so thrilled! I am embarrassed that I broke down and cried to these people, but it seemed to produce the results that we really needed. Hopefully, with our new oncologist, we will be able to hear more details and feel more confident that we're heading in the right direction with Matt's treatment!

In other Matt news, on Tuesday he had the opportunity to go to SLC with the 4th grade from his school to celebrate the re-dedication and renovation of the Capital building. Three schools from Logan went and had a 30 minute performance in the rotunda. It was so fun! Matt even had a speaking part. He was the first speaker and introduced their schools. His teacher said that he was her absolute first choice because of his expression and confidence when speaking. I was so proud of him and couldn't help but compare this confident boy with so much talent, to the boy who started the school year who was unable to remember where his classroom was! We have watched an incredible transformation over these past 6 months. There is still a long way to go, he has good days and bad days, and I'm not sure Matt's memory will ever be at his pre-tumor 100%. But if it didn't get any better, he would learn to compensate and would be able to function just fine. I would not have felt that way six months ago! We are incredibly thankful for this progress, and that Matt is still his happy, sweet, quirky self!

Love,
-Alli

Hmmmmmm....... Do you think it's time for an update?

Merry Christmas and Happy New Year!

I'm not quite sure where to begin this update. Lots has happened, most notably Matthew getting his December scans last week. I was so anxious in the days leading up to the MRI's, I think I made myself physically ill. At some point I realized that MRI's have NEVER resulted in good news for Matthew. Initially the scans were for diagnoses (obviously not good news). Then there were more scans that showed the significant seeding and spreading of the tumors into the spine. Then there were scans that confirmed the seeding. Two months ago were the scans that showed the tumors had gotten bigger and were showing more activity, despite the chemotherapy Matthew had been on for two months. No wonder I was feeling so anxious about these! The news we received last week was again a mixed result. Part of the main tumor was larger and part was smaller. Who knows what this means?!? Also, his ventricles were slightly smaller so less hydrocephalus (YEA!!), and the tumor seeding in his spine and brain stem was stable (YEA, again!!!) So, the current plan is to stick with the Temodar for 2 more months and re-scan. Hopefully we will then have a very definite idea if the chemotherapy is effective. Matt just completed his third round of Temodar and again seemed to handle it pretty well. He did throw up a little bit this morning, but insisted he didn't think it would happen anymore and that he felt well enough to go to school. They haven't called yet, so I assume no news is good news!

I am so thankful that we were able to postpone scans until after Christmas. It made for a really nice holiday! Matt felt really well since he was 5 weeks post chemo. Here are some photos from our day.

Christmas Eve in new jammies!

Matt being suprised by his new IPOD

Andrew, Nathan and Warren checking out the race track - the cars are meant to crash!

William with his awesome GI JOE......thingee (thanks uncle Alex!)

Andrew with his new 'Ben 10' watch


For New Years Eve we also had a really fun time. We went up to this mountain resort near our house that Warren and I have talked about checking out for 10 years! They had a room with 3 queen beds, 2 bathrooms, and a separate bedroom. It was perfect for our family. We went up there and the boys swam - there was a jacuzzi with a waterfall along with a pool and a very shallow toddler pool. The boys had a great time. Matthew couldn't swim, because his line can't get wet, but he could sit on the top step of the hot tub or pool. Then we had a fancy dinner at the resort restaurant. The Prime Rib was some of the best I've ever tasted! Afterwards we got into jammies, watched movies, and were all asleep well before midnight! :-)

Last thing, and then I will end this insanely long update! Baby Jake is so stinkin' cute! I thought about posting pictures of him on his own blog, but can't resist putting a few here! He is nearly 2 months old and HUGE! I'm anxious to see how much he has grown since his last doctors appointment!

Here is a good shot of Jake's red hair - and his famous 'Hold to the Rod' pose

One evening Matt asked to hold Jake while I was cooking dinner. I thought it had gotten awfully quiet....

Smiling at Daddy

Check out those cheeks!!

Fun, ANNUAL family tradition! (Or, 'New Blue Cast' the Drew event.....)

Almost exactly one year ago, on Thanksgiving day, Will broke his arm..... (See post, here).

Since Drew can't handle that sort of one-upmanship, he decided that not only would he break his arm, he would out-do Will by completely snapping his humerus in two places. He also thought that emergency surgery and staying overnight in the hospital would really show Will and his other brothers how this broken arm thing is done!

Truly, I wish I could figure out how to put a copy of his X-ray on my blog! His arm was literally in 3 pieces with the small middle broken bone turned sideways - his arm bone looked like a 'Z'.

On Sunday afternoon I was in a cooking mood. I had a yummy smelling pot roast in the oven with potatoes and carrots, a fancy salad, and homemade challah bread. I was putting the last touches on dinner and waiting for the roast to finish when I heard Drew start to cry. He and Will had been playing nicely upstairs (or so I thought!) When I went to the stairs I noticed Drew holding his arm funny - it was sort of hanging there and not moving. When I unbuttoned his shirt and saw his arm I just calmly told Nate to 'go get Dad right now'. Drew's arm was very clearly broken. We left the 4 other boys with Diana and went right to the Emergency room.

At first, the only story we got from Drew and Will was that Drew was getting a piggy back ride from Will. The ER doctor really questioned this (making me feel like an awful mom!) He said that breaks this severe don't happen if a child falls off a piggy back ride. Upon further questioning, it seems Drew was getting a piggy back ride ON WILL'S SHOULDERS! Apparently, Will sat on the edge of the bed and told Drew to climb on his shoulders. When Will went to stand up (with Drew) he lost his balance - Drew is only about 10-15 lbs. lighter than Will! Will stumbled forward and Drew toppled off his shoulders, hyper extending his arm on the way down and snapping his arm.

So, the ER doctors had to call in the Orthopedic surgeon who took one look at the X-rays and said Drew needed to be in surgery ASAP to avoid nerve damage. Within the hour, Drew was taken to surgery. Luckily, the doctor didn't have to open up the arm, he was able to set the break with pins. That was the best possible solution for the severity of the break, so we were happy. Drew spent the night in the hospital and we arrived home around noon on Monday.

Yesterday we went back for a follow up. Drew was having some pain in his arm, despite the fact that he was on a maximum dose of pain medication). They took X-rays again to rule out the pins shifting and also checked him closely for infection. The doctor determined that it was most likely nerve pain or his arm had gotten bumped a bit. He decided to go ahead and put Drew in a hard cast, rather than waiting until Monday when it was originally scheduled.

So, here you have "New Blue Cast" version Drew!

Re-creating the wheel.......

This year, our computer crashed. I've gotten a good lesson in backing up files (I lost all of my photos, music, and other files) and also a good lesson in not turning your 'old' computer into the 'kids' computer until you take your Christmas card list and put it on your new computer!!! Alex (my computer whiz kid brother) was able to retrieve a majority of my files, but right now my hard drive from the old computer is at his house waiting for me to go through every computer file and stick it where it belongs - I anticipate this taking several months once I actually begin....

Anyhow, I am hoping that you guys can all send me your addresses so I can re-create my Christmas card list. The thought of hunting down all of our friends from New York, Boston, and Chicago is a little overwhelming at the moment! Please email me at:

goodworth1@aol.com

Thank you everyone!!!

Thanksgiving and the 2nd round of Temodar!

We had a very eventful week this week! Particularly, when you consider that Jake is only two weeks old! On Tuesday I HAD to go buy some pants that actually fit me. There is nothing more demoralizing than giving birth and then trying on pants.... Anyhow, I thought that since we had a rather busy week ahead, I might need something to wear besides the Yoga pants I had worn every day since Jake was born! :-) So, Tuesday I went and got Thanksgiving groceries, tried (unsuccessfully - long story) to fill Matt's chemo prescription, and bought pants. On Wednesday Matt had an appointment with Oncology so he could start the next round of Chemo. Matt, Jake, and I left early - around 8:00 a.m. and picked up my mom at work so she could come with us. Matt's appointment went well. We met with a new Oncologist (since our regular, but never actually sees us doctor is on personal leave for 2 months......) and we really liked him. He spent quite awhile evaluating Matthew and talking with us. Matt looked great. His counts were wonderful and he got the go-ahead to start the next round of Temodar. We also found out that next month Matt will get another full set of MRI's. I thought this would be happening in January, and am not really looking forward to having these done a few days before Christmas. I talked to the doctor about our next plan if the Temodar (like the Carboplatin) is not shrinking Matt's tumor. He said there would be another 'tumor board' meeting about him and that most likely Matt would begin radiation earlier than originally planned. I am just anxious to get the scans and results! Each treatment we try brings us closer to the end of the options we have - once you've tried several Chemotherapies, the chance of any Chemotherapy affecting the tumor is slim since all Chemotherapies take advantage of the same process. I just want the Temodar to WORK!!!

Thursday was Thanksgiving (and, incidentally, Warren and I's ELEVEN year anniversary!) and we just had a wonderful day! We hosted the dinner - but I didn't cook anything (thanks Meg for organizing, and everyone for bringing everything and helping!) I was more comfortable keeping Jake at home and having people here, then I was taking him out in the cold while he is so tiny. My brother-in-law did a deep fried turkey. It was so FUN and the turkey was amazing! The food was awesome and the company was even better. Alex (my brother) brought his Wii and there was always a crowd of kids and adults laughing and playing games. Everyone seemed to enjoy eating and visiting and eating some more.

The rest of the long weekend was spent putting up Christmas decorations, and Warren and I were able to go out to dinner Saturday night to celebrate our anniversary. I kept Jake home from church again on Sunday - I'm just not ready to expose him to 'Church germs' yet! :-)

Matt completed his second round of Temodar yesterday (Sunday). He has seemed to tolerate it pretty well, although today he has been complaining of being tired and has had a hard time eating. Tonight I made chicken and black bean enchiladas - usually a favorite dinner for him. However, he took one bite, turned completely pale, and I thought he was going to be sick. He made himself a cheese sandwich, but still only ate a few bites. Hopefully this symptom will be short lived and he will be able to eat normally in a day or two. I will be interested to see if this round of Chemotherapy affects his blood counts. So far, nothing has really bothered his counts, and he seems to have 'Chemo-proof hair'. I keep trying to prepare him to lose his hair, but that isn't happening. His hair is as thick and wiry as ever!

Let the Holidays begin!
-Alli

Introducing Baby Jake!!!

Photo and video editing at www.OneTrueMedia.com

24 Hours Old!

I can't believe how quickly babies become a part of your life. Baby Jake is only 24 hours old and already I can't imagine our family without him. I know he was meant to come to us. In honor of this 24 hour milestone, I want to post 24 things I LOVE about my sweet boy already:

1)His sweet red hair - I was hoping for another redhead!
2)The way he smiles in his sleep.
3)His BIG feet.
4)His soft cry. It's really more of a grunt - I have yet to hear him really cry!
5)His little fingers interlocking in funny ways when he sleeps.
6)His strong neck. He can already hold his head up!
7)The way he sighs. When he is awake he just never stops 'talking'.
8)His cute frog tongue. His tongue flicks in and out all the time.
9)The way he makes Will smile. Jake is definitely Will's brother - they look just alike and Will is so thrilled!
10)His calm personality. He is really quite content to gaze around.
11)His soft skin.
12)His yummy baby smell - how do babies automatically smell this way?!?
13)His scrunchy little nose.
14)His long fingernails. We already had to clip them this morning!
15)His round belly.
16)His long arms and legs tucked in like a little frog.
17)His name. I think Baby Jake is so sweet!
18)That he is ours. We love him so much already!
19)How much the boys love him. Drew just cried last night when Diana took them home because he wanted to see Baby Jake one more time.
20)Watching Nate hold him. You could just tell he was thrilled to be a big brother.
21)How happy Matt is to 'have our very own basketball team!'
22)Jake's serious expressions.
23)How he hates to be swaddled, already. He fights to free his hands.
24)How he completes our family. We are so blessed to be the parents of this little bundle of Heaven!

-Alli

Hallelujia!!!! FINALLY - we have a baby!

Yesterday morning, when I went in for my appointment, my OB gave me the option to induce. He said that since I was close to my due date, my body seemed ready, and I had given birth vaginally twice before that perhaps some low-dose Pitocin was not an unreasonable risk. I thought about it for about, oh, 2 full seconds before I agreed! We went to the hospital, got all hooked up, and once a good labor pattern was established with the Potocin, they were able to turn it off! Apparently my body was ready and just needed a little kick start! After about 7 hours of labor ...........(drum roll please!)

Jacob Dunlap G. was born!!!
He weighed 8 lbs. 15 oz.
He was 22 inches long.
He was born at 8:24 p.m.

I couldn't believe how big he was - my biggest baby by 13 oz.! (Matt was the previous record holder at 8 lbs. 2 oz.).

Pictures to follow soon......

-Alli

Random post - but I thought this was too funny!

So, I expect to have another toddler in my life soon (well, assuming this baby ever decides to come out - hopefully before s/he actually IS a toddler!)

This video cracked me up. Anyone who has, or has ever had a toddler can relate!
Toddler UTube.

Matt's first shower in THREE MONTHS!!!

We are so excited! Because of Matt's Broviac in his chest, he isn't allowed to shower or swim. Other parents I have spoken with who have children with Broviacs are allowed daily showers, but I suppose Primary Children's is extra conservative in this regard. I even went to the 'official' Broviac site and they say that kids can shower and swim with Broviacs in!

Anyhow, any of you with 9 year old boys care to comment on how well sponge baths and 1x weekly bathing would work for your boys?!? Particularly now that Matt is attending school each day, he gets pretty stinky and sweaty. I have been going bananas trying to keep him clean! So, as I was researching on the web I found this product. I bought a package and when his home health supply company called I asked them if they carried this product and they do! They will keep me supplied so Matt can have daily showers! I know it's a silly thing to be thrilled about, but it makes such a difference to us. Imagine being a 9 year old boy and your mother having to bathe you in a bathtub - Matt had to hold a towel over his site so I could help him wash his hair/body without getting his line wet!

He thoroughly enjoyed his first shower in months. The stuff did start to peel off toward the end of his shower. I think we need to play around with it a bit to find a strategy that keeps things perfectly dry, but this was a big improvement over our previous system!

-Alli

Oh, and no, not yet, obviously.....

For those who need to know!

NOPE....... NOT YET! :-)

Since I have received several emails and calls today, I thought I should confirm. I told Luke (my BIL who said the baby would be late) that if he is the winner of our baby poll, he doesn't get the prize!!! (Not that there really is a prize, but it made me feel better to punish him somehow.....)

All is well here, though. Matt is having an exceptionally great week. He looks better than he has looked in ages. He is going to school all day long and is remembering minute details about his day - YEA!!!

I need to post Halloween pictures....... Soon, I (sort of) promise!

-Alli

Warren said my last post sounded whiny.....

Um, you don't want to hear what my reply was!!!!

A little (okay a LOT) Pathetic, but I'm desperate here!

I am really beginning to panic about this baby coming out. I am actually a pretty patient pregnant person (don't ask Warren to confirm that....., but I hear other ladies complain, and he just doesn't know how good he's got it! :-)) I am also opposed to being induced (and my OB wouldn't induce anyhow because it's dangerous for me). I am not a good candidate for induction because I had a cesarean with the twins. Anyhow, I really thought this baby would have come by now. It's funny, I was so worried about pre-term birth. If this little one gets any more comfortable, I am going to have some serious timing issues! First and foremost, I am Matt's primary caregiver. Warren can do all this stuff, but I am the one who actually does do all this stuff. I am the chief administerer (is 'administerer' even a word?) of the chemotherapy, medication tracker and giver, fluid tracker, IV medication/fluid giver, central line flusher, and appointment goer. We are currently in a great in between stage for all of these things. Someone would have to make sure Matt received his medications, flushed his line, and tracked his fluid intake. However, if this baby decides to hang out for another week or two, Matt's got an appointment that I would miss (and Warren has to be out of town that day...), someone else would have to give him his chemo, IV meds, and IV fluids, and I would have a nervous breakdown!!!

So, this post is a shameless beg for prayers that I will have this baby ASAP. I NEED this baby out!!! So, as I warned you in the title, this post is completely pathetic. However, I am going to have a panic attack if I think any further about how complicated my life gets if I go into labor at the wrong time!

From your pathetically pregnant pal,
-Alli

My bags are packed, but this little one's staying put! Also, update on Matt's first round of this new chemotherapy.

I just thought I would update everyone and let them know (Hi, Darla!) that I am still very much pregnant... On Friday, at my appointment, they pretty much confirmed my worst fear - I will officially be the first woman ever to be pregnant FOREVER! :-)

Seriously, I am feeling pretty good. Well, as good as a woman as big as a whale can ever feel. I am just hoping s/he makes their appearance soon!

Matt finished his first round of chemotherapy yesterday (Friday). He hasn't been throwing up this time (thank goodness!), although he has been on a very strong IV anti-nausea medication each day before he receives his chemo. He has felt pretty good. On Tuesday or Wednesday morning he came in and said, "Uh, mom, remind me why I can't go to school....?" I just wanted to see how he handled things this first time taking this new drug! I would hate to send him to school and have him get sick or be too tired. I asked on my Pediatric Brain Tumor message board (thank goodness there is such a thing, those moms and dads are awesome and so informative!) about their children's experiences with this new drug. They all said that while taking the pills, their kids have done great and have been able to attend school. Apparently, counts fall about 2-3 weeks after the meds are given, so this is when most of their kids have had problems and maybe needed to stay home from school. All I know is that Matt has been anxious to get back! Today he was quite tired, and a little 'off', though. He is on a hefty dose of the chemo drug, so fatigue is normal. Hopefully he will feel well and be able to attend school on Wednesday (Monday and Tuesday are school holidays).

So, that's about it on us! I hope that next time I update, it will be to tell you I had a baby!

-Alli

Okay, you all are in trouble!

Seriously, any of you predicting that I'll go over my due date (you know who you are...) are at risk of never being spoken to by me, ever again! :-)

Our Baby Poll!

Good News/Bad News - I really don't know WHAT to think!

Today was our HUGE appointment for Matt. He was due for sedated MRI's, along with audiology and chemotherapy. We had to be to the hospital at 7 a.m., so we decided to go down last night and get a hotel.

This morning, we started by registering in same day surgery. Man, it was a zoo in there! We got there slightly before 7:00 and every seat was full. We got him all checked in for the general anesthesia and then headed up to audiology at 8:00. His audiological testing came back showing some hearing loss. We have expected this, but I still hated to learn about it! The loss is slight, at this point, and is also in the high pitch (i.e. seldom used, and never in regular conversation) frequencies. Matt's hearing was still in the low-normal range, but I worry about it falling further! His left ear also now requires more volume for him to hear well.

After audiology we went up to Oncology so Matt could have his clinic visit and have his labs drawn (new labs must be drawn within 24 hours of receiving chemo). They told us that they wanted to admit him to the PICU after chemo., to stabilize him and make sure he stayed stable for 24 hours. He got so sick after the last round of chemo., and dehydration is a HUGE concern for Matt because of his DI. I didn't like the idea of the ICU because, well, it's the ICU!!! However, that is the only place in the hospital that they can give the DDAVP through a continuous drip. So, we figured that was the plan. We then went back to same day surgery so Matt could change into a hospital gown in anticipation of his MRI's. He and Warren played video games, and we just waited. There was a little boy in there with markers on his head - I thought, 'those look too familiar!' After I saw one of the Neurosurgeons go talk to them, and heard the word 'tumor', I just felt so bad for this family! I spoke to them for a moment and told them good luck and that I would be thinking about them. He was just such a sweet little boy, and it breaks my heart when I see another child embarking on a similar journey to ours!

When we went down to MRI, they got Matt in right away. We met the anesthesiologist, and Matt was hooked up to fluids through his Broviac. The doctor was telling us what to expect and said that when he put the anesthesia through Matt's line he would be out in 5 seconds. I thought it was a figure of speech, until he started putting the Propofal through! Honestly, it scared the crap out of me that there are drugs that can knock you out that fast! It was literally 3 seconds , Matt's eyes rolled back in his head, and he became completely limp.

The MRI's lasted several hours, and after Matt woke up from the anesthesia we went back up to Oncology. They had us go back to a separate room in 'infusion' (never a good sign.....) so the doctor could talk to us in private..... When the doctor came in he reported the good news first. The tumors that have spread and seeded (so the back of his head, brainstem and down his spine), have reduced. They are thinner, and the chemotherapy is clearly having an effect. However, the main, large tumor in his hypothalamus/optic chasm has grown.... Of course, the growth is small, but there is growth. The tumor also showed up 'brighter' on the MRI's, which shows active cells. Because of this bad news, they decided to change Matt's chemo. protocol. This wasn't completely unexpected, as this new drug was the one that the doctors at John's Hopkins wanted him to have. They felt that Carboplatin was a reasonable place to begin treatment, but if the results were not as positive as we had hoped, that this new drug, Temodar, should be used. Particularly, if Matt's tumor is in fact a Oligodendroglioma, Temodar is the best choice. They also increased Matt's MRI's to every 2 months instead of every 3. Hopefully this new drug will shrink his main tumor! Another benefit to the Temodar is that it is given in pill form, and is given at home for 5 days in a row, every 28 days. This is more convenient for me, both with a new baby coming, and also the hectic holiday season. We still have clinic appointments once a month, and I'm sure we will still be in often for this or that, but the long chemo appointments will be over for awhile - at least until December or January when he has his next set of MRI's and we re-evaluate.

One sort of funny thing. As we were talking to the oncologist about this new drug he said, "we will need to contact your insurance to make sure they will cover this drug, it is very expensive..." I called BC/BS and they said they did. Shortly after my call, the nurse came in to give us the prescription and said, "now, do we know your insurance will pay for this drug?" On the way home from the hospital we stopped at our pharmacy to get the prescription filled (we really didn't even expect them to have it, so were surprised when they did!) The pharmacist looked at the prescription and said, "does your insurance know this is coming through?" At this point, Warren and I were just looking at each other thinking, "how expensive can one drug be???" As the pharmacist handed us the bottle and told us our co-pay was $50. He then said, "and your insurance covered the rest of the $2,613!!! HOLY-MOLY!!! For ONE MONTH, this drug costs almost $2,700! That is for 5 pills (well, we actually received 15 pills because they only had the 100 mg. pills and Matt will need to take 3 per day for 5 days each month. I know I've mentioned it before, but thank goodness for health insurance!!!

So, there is my very long update on our very long day! The good news is that Matt seems great! His memory is coming back, he has been feeling wonderful, and he bounced back from his long day quickly. I will keep him home from school for this first dose of chemo (so this whole week), but we are hopeful that he will do well on this new drug. We are also praying that it is effective on the main tumor. That sucker needs to SHRINK!!!

Love,
-Alli

Make some guesses about our baby!

I found this game online and thought it would be fun to have everyone make predictions about our new little one! We don't know the gender, so now's your chance to tell us what YOU think it is! You don't have to register to the site to make your predictions, just FYI!

Here's the link:
http://expectnet.com/game.php
Our game name is:
GBabynumber5

Sorry if it won't work for you. It was working fine when I put it in originally. I hate computers!!!

-Alli

Nesting......Now I'll be able to locate all the clothes I still won't fit into for at least another year!

I don't know what it is about closets this pregnancy. I am just obsessed with getting them organized and labeled. Yesterday I did my own closet. I need to weed out things I'm not wearing any more, but I'm not sure that 8 months pregnant is a good time to be judging what I want to keep. It's kind of like cutting your hair short when pregnant - just don't do it, you will regret it! Anyhow, at least when I look at the shelves in my closet they aren't a huge jumble of summer and winter clothes, pants, sweaters, shorts, etc... Everything is separated and in it's own little basket. It's very satisfying.

Matt had his blood draw yesterday. All of his numbers came back looking great, again. He will need another draw on Monday morning because there have to be labs within 24 hours of giving chemo., but I think everything will look really good. While I was talking to the Hem/Onc nurse about his labs I had a chance to ask some questions. I asked about side effects and if it was normal for a child receiving Carboplatin to have as few side effects as Matt has had this round. She said some kids do really well on it. She also said that each time can be drastically different. So, I guess there is no way to judge how he will do after each round. I was sort of hoping that after the 2nd or 3rd round you had a good sense of how difficult it would be - apparently not! She also said that the longer kids were on chemotherapy, the more it affected the bone marrow and the more difficult it is to get the counts up high again before the next round of chemo. My second question was related to his counts. I have been worried (as I have expressed in other posts) that if his counts are staying so stable, is the chemo. really affecting the tumor? For this question, the nurse hedged a bit and said it is one of those questions that doesn't have an answer. Sooooooo... pretty much they don't know, but to me it sounds like there is at least some argument that I am right to worry! (Not like I need an excuse!)

-Alli

Well......

I'm still pregnant....

I shouldn't be impatient. I do have 3-4 weeks to go. It's just difficult because my last babies were born in my 35th week. The babies were both huge (6.5 lbs. and 5.8 lbs.) and they did perfectly and were able to come home with me. So, even though I'm not officially 'term' (this week I will be, though!) it feels like I am 'overdue'!

This week would be a crazy week to have a baby, though! Diana is visiting Boston, so I'm not sure what we would do with the kids! Also, next Monday (the 22nd), Matt has a HUGE appointment. We begin at 8 a.m. with audiology testing. Then off to same day surgery so Matt can get general anesthesia for his MRI's. Then he has 3-4 hours of scans of his brain and spine. After he wakes up from the anesthesia, we head straight to Hem/Onc for a clinic appointment and chemotherapy. Then, we still have to talk to the Oncologists and Neurosurgeons about what the scans showed. So, holding the baby in another week or 10 days would be best. However, it won't stop me hoping every night that my water breaks while I'm sleeping! ;-)

Matt has continued to do well the rest of this week. At church today I received several comments about how well he looked. YEA!!! Yesterday was sort of weird. He started feeling really nauseated and threw up several times. Of course, I panicked! Vomiting can be caused by several things - a virus, which wouldn't be a HUGE deal because his counts have been great and he should be able to fight off something right now. It could also be a bacterial illness, potentially more serious, especially if he had low counts. It could also be a late effect from the chemo., again nothing to worry about, we would just treat it with anti-nausea meds. Or it could be from his ventricles enlarging. Remember, Matt doesn't have a shunt, but they anticipate that at some point he will need one. We're always worried that headaches or vomiting are caused by increased pressure on the brain. Lastly, it could just be the fact that he ate AN ENTIRE BAG of beef jerky while he, Warren and Will were fishing yesterday morning! So, after waiting awhile to see how he did, I finally called the oncologist on-call. He said to give a bag of IV fluids, along with the IV anti-nausea meds and if Matt was still throwing up and feeling miserable, then we needed to bring him in to SLC to the ER. LUCKILY, the IV meds did the trick. He was feeling a ton better last night and even ate a little bit of dinner. He slept well and was anxious to go to church today. I feel thankful that everything seems all right now!

Love,
-Alli

And the numbers are IN!!!

We got Matt's blood counts back this afternoon and, really, things could not look better. Everything that is supposed to be going up is going up, and everything that is supposed to be going down is going down. :-) It's just so strange that last month, we were at Primaries 2-3 times per week - literally! Matt had some strange things with his blood counts and endocrine panel and he needed a transfusion. This month.....nothing. Everything has looked fantastic from the first blood draw. He still feels wonderful, his sodium is staying stable, and his immune system still seems to be functioning normally.

So, my concern, as was raised last week is:

What the heck is the chemo. doing if it's not making him feel crummy and have crazy blood counts?!?

(I expect each of you to remind me of this whine when things do get crazy, and I'm complaining that he's too sick!) :-)

Love,
-Alli

Photos and the REST of our summer!

Since I was so far behind in updating my blog, I thought I might post some picture of the rest of our summer! We really did enjoy our summer - up until August...

I also went back and finally put a few relevant pictures of Matt's hospital stay and surgery into their respective blog posts. If you are interested, you can go back and look at the photos. WARNING: I POSTED A PICTURE OF MATT'S INCISION IN THE UPDATE LABELED 'LAST NIGHT'. Fainthearted readers may want to avoid this picture!

Okay, now for our summer:

We moved to Utah - these are the hills behind our house. Someone hauled this bench all the way up the side of the mountain! Since I could barely climb the path to this bench, it's amazing that someone did that!

Warren bought a 4-door Jeep that has been a BLAST in the mountains! We also bought a canoe and that has also been a lot of fun. This is Warren and the boys fishing up at 'the Dike.' (At one point, Warren actually did have all 4 boys with their lines in the water - simultaneously! That's a heck of a dad!)




4-Wheelin' Boys! Have I mentioned yet, that boys (well, at least my boys) LOVE to go on anything fast and semi-dangerous? This was also up camping at 'the Dike.'



Will makes us laugh - always! While camping he was doing some 'research' as to how many marshmallows might fit on a horseshoe shaped roaster. Of course, he just likes to light the marshmallows on fire. Heaven forbid he actually eats them! :-)


William played 'coach pitch' baseball. Here he is as the catcher.


Big Sticks. Dusty Mountain Trails. A dog. Dad's new Jeep.
I'm not sure anything else would make for a more successful summer season for little boys!



We also had an awesome family reunion up at Bear Lake with Warren's family. We rented a cabin, a boat, and a wave runner. It was a hugely successful and fun reunion. But, I didn't take any pictures! I video taped a lot of it, but got home and realized I didn't have even ONE photo on my digital camera - what was I thinking?!? That was just a week or two before Matt's diagnoses and I am SO GLAD we did it. It was such a fun, normal activity and Matt was able to spend 4 full days laughing and playing with his cousins. We also did a few sessions of swimming lessons and went to the local pool several times. All in all, the summer was a blast. I am thrilled that the memories BT (before tumor) were so positive!

Love,
-Alli

One benefit (???) to having a child with a brain tumor...

The other day there was a message from my boys elementary school telling me that they were due for an immunization. I wasn't sure whether or not a child receiving chemo. can get immunized because of their compromised immunity. I called Hem/Onc to ask them and found out that Matt may not have any immunizations, but that once he has been out of treatment for 6 months he can resume his immunizations where he left off. From there we spoke a bit about flu shots. Apparently these are okay and Hem/Onc wants all of their children receiving chemo., along with all family members to receive one.

So, after I hung up with the hospital, I called the pediatricians office. When I asked about flu shots the gal said they would begin giving them on Nov. 1. When I asked if our whole family could come in at the same time to receive one, and explained that Matt was on chemo. so we all needed one, she told me to hold on a minute, she had heard that there was a possibility the shots might be available Oct. 15th. When she came back on the line she said that our family could come in any time. :-) So, next week we are all going to go in and get our flu shots. It's just amazing that impossible things are made possible instantaneously when you mention the words 'chemotherapy' or 'brain tumor' or 'cancer'. I have found people in the medical community to be especially compassionate when they find out we have a very sick child. I try to not abuse the situation, but it's funny when something happens to be mentioned, how quickly people respond!

Matt's great again today. Hopefully this will keep up!

Now I'm off to start sorting the mountain of medical bills we suddenly have. The sheer volume of paperwork for each procedure is overwhelming! There is a bill, then an itemized statement of services received, and an explaination of benefits from the insurance company. These all, of course, come seperately and need to be matched up to figure out what we actually owe! I'm going to make an excel spreadsheet to try and keep everything straight. Man, I wish I would have persued a degree in accounting!

Love,
-Alli

WHY can't I just enjoy good days???

We had another great day with Matthew attending a full day of school. It is so nice to see him come home and feel well enough to do homework, eat dinner, etc... He had his weekly blood draw early this morning and his counts are actually looking really great. His ANC is within the NORMAL range! His platelets and hematocrit are both a bit low, but not so low that he would need a transfusion. His sodium was a little high, and I think that's a result of me not being able to obsess and push fluids all day while he's been at school. Today I sent him with a 32 oz. water bottle and strict instructions that he had to drink it all by the end of the school day and that he had to drink all of his milk at lunch. If he can get in 40 oz. at school, then I can encourage the rest both before and after school.

So, why am I so crazy? I am now worried that if he feels this great during chemo., it can't possibly be doing what it is supposed to be doing!! See, I can't win (or rather the doctors can't). If he has a ton of side effects I think the chemo. is too strong. If he has too few side effects, I think it's not strong enough. Sheesh... Can't I just be thankful that this round he is doing well? If I think about it enough, I can assume it's Heavenly Father's way of helping me get through this last month of pregnancy. It should be nice to be able to stop worrying a little bit about Matt, and focus on this new baby who is going to be here before I know it!

Poor William has had a little bit of a flu-bug today. He threw up this morning, and also had a fever. I kept him home and he just hasn't been able to keep anything down all day. Poor guy! If he still feels crummy tomorrow and continues throwing everything up, we'll go see the doctor. On a selfish note, I am feeling tired of being home cleaning up vomit! My kids have all had a very throw-uppy couple of months, and I am getting a little bit tired of it!

Love,
-Alli

More good days to report!

I can't believe how well Matthew has been doing these past few days. He felt so well over the weekend that I allowed him to go to school for a full day yesterday. He did so well, even coming home and actually doing his homework! Today he also felt well enough to go to school for the entire day and I was happy to let him.

We are getting good reports from school, as well. Last night his teacher called me to ask a question and mentioned that he had memorized a fable that the class had been working on. Apparently, once a month or so, the children all focus on memorizing something. This fable was probably 1/2 a page long in small type. Matthew passed it off in class and when I asked him about it last night, he was able to recite it to me. I almost started crying - that is such a change from his severe memory issues! I am thrilled with the progress we are seeing and I am anxious for his re-evaluation from the Neuro-psychologist (6 months to 1 year from his first eval.) I think it will show pretty significant improvement.

On Saturday I took Matt to Sam's club and as we were leaving he asked me a question. I didn't know the answer so I replied, "I can't remember." He quickly exclaimed, "Mom, THAT'S MY LINE." :-) He's been a funny, happy kid these past few days.

-Allison

P.S. I think I am 'nesting'. I have felt obsessed with getting all of my closets in order. I bought a label maker and pretty much everything in my life is currently being labeled. :-) My mom came this weekend and she and I got all the boys clothes sorted, weeded out anything that didn't fit, and put everything into baskets with LABELS. I am thrilled with this little bit of control I have over my life right now. I just need to get my own closet done - in anticipation of wearing my regular clothes, and then I will feel closer to ready for this baby. I should take pictures and post them - you all would be so proud of me! :-)

Oh Baby!

Today was my 34 week appointment and all is still well! I am measuring large - about 36 weeks. With each passing week I feel relieved that I don't have a preemie. As the due date gets closer, though, I am starting to wonder if this baby will ever make an appearance. Who knows, with all these prayers for our family, including prayers that this baby stay in, I might not EVER give birth. Please, everyone who is reading this, DON'T LET AN ETERNAL PREGNANCY BE YOUR FAULT!!! :-)

All kidding aside, I appreciate all of the prayers for our family more than anyone can know. I can honestly FEEL the changes that have come as a result of those prayers. We feel so comforted every time someone says they are praying or fasting for our family, or when people mention that they've put Matthew on a Temple's prayer roll. It means a lot, and there is power in everyone's combined faith.

We had a very positive day again today. Matt went to school, remembered things I didn't expect him to remember, and had a lot of energy. Tonight he was quite tired, but he's had a busy couple of days. Of course, though, I can't help but worry that the tiredness is his hematocrit (red blood cells), which was slightly low on his blood draw this week. I hate that a child being a little bit tired, can't just be dismissed as a child who is a little bit tired. I feel like I'm always looking for something 'wrong'. It's not just Matt, either, I worry so much about my other boys, as well. I've never been a paranoid mom about, well, anything. I think germs are a normal part of life, don't obsess about sugar, and think that my kids will be just fine no matter how advanced or behind they are in preschool. That's why this diagnoses for Matt has put me through such a loop. Now I feel justified, almost obligated, to consider obscure illnessess in my children for every little thing. Instead of my usual, "Oh, it's probaby nothing. Just give it a week and it will most likely go away", I now worry that everything is a brain tumor!

Oh well! Everyone have a great weekend. I need to think of something FUN to do since Matt is feeling so great!

Love,
-Alli

Another fantastic day!

Matt was able to go to school today. It felt really normal because it was a 1/2 day for everyone, so he stayed with his class and took the bus home (rather than me picking him up at noon). He has been energetic and has done homework the past couple of days. It's nice to see him re-emerging. The memory issues are still significant, but my boy is still there.

It's amazing to watch the changes from week to week. Last Thursday Matt was so sick! He just wandered around the house with his throw-up bucket looking awful! Now, he's happy and comfortable, not too nauseated (although his food preferances and cravings are very different than they were pre-chemo), and he was even able to go with Diana and the younger boys to the 'fun park'. They are there right now. It has a big 'soft play' area, video games, bowling, etc... He was really excited and anxious to go with them. I was thrilled to let him!

Now, though, I am going to go take a nap!

Love,
-Alli

School's back on! (for the moment)...

Last night we received a call from our home health nurse scheduling Matt's blood draw for today. She said that she had just called Hem/Onc to get the orders for the draw and they had told her that they didn't want Matt going to school until we knew what his counts were. :-( He fell pretty dramatically last time and we surely don't want to risk illness or infection by sending him back if his counts are low! He was so BORED today. It made me worried because what if he feels this good for the entire year but can't go to school??? I guess I imagined that if he was too sick to go to school (with his counts) that he would feel crummy, as well. If he feels good, but his immune system is down, we are in for a long year (oh, yeah, I think we're in for a long year anyhow...) So this afternoon he got his blood draw and everything is looking pretty good. His ANC is high enough to go to school tomorrow. He was so excited when I told him. So, here we go back to our 'normal' life. Last time it was 2 and 3 weeks post chemo that he had such awful numbers, so we'll see if this month follows that pattern.

Love,
-Alli

Visit with Dr. Walker

Matt and I left for SLC this morning and had a great drive. He kept saying, "Mom, the only thing I love about visiting the hospital so often is this beautiful drive." I agree that the canyon is lovely, not so much about the construction in Ogden! Midway there he began asking if we could go to Kentucky Fried Chicken. Apparently fried chicken was a craving - and as a mom I felt obligated to indulge it. We stopped for lunch and then arrived at Primary Children's a little bit early. The parking lot was an absolute zoo and we had to drive around for 15 minutes before we found a spot! I was worried that our day was going to be l-o-n-g since there were so many people there. However, we got checked in right away and there was NO one in the waiting room for CT Scan/MRI! We checked in and were immediately called back. CT Scans only take 5 minutes, so afterwards we were on our way to Neurosurgery - again, a few minutes early. I was anticipating a long wait there, as well, but we had barely sat down when they called Matt back. It was so nice to see Dr. Walker again - have I mentioned that I trust him implicitly? He gives good advice and is amazingly knowledgeable because of his years of experience. He is just a wonderful doctor. Matt was released from his 'two feet on the ground' post surgery instruction and he can now ride a bike (with a helmet, the Dr. was quick to add), and do pretty much any other 'normal' 9 year old boy stuff. He can't, however, go back to P.E. Dr. Walker feels that it is too uncontrolled and can get too wild. Matt wanted to know if he could go to Lagoon, and the answer was YES. Roller Coasters are apparently okay, but jumping on a trampoline is not. I was worried that something physical Matt had done had caused the tumor to bleed (we had been boating, and he had been pulled on a tube, the week before, and he had just started Football). He has been an active kid this summer and I worried that by letting him resume activities, the tumor might be more likely to bleed. Dr. Walker said it's not related and Matt can go back to a normal physical activity level. Lastly, Dr. Walker had not heard that we had gotten a different pathology opinion from Dr. Burger. He felt like it was important to know whether it was a PMA or an Olio. In fact, as we left I think he was calling pathology right away. I'm glad he felt that the second diagnoses needed to be reviewed further. Dr. Burger is apparently one of the best and Dr. Walker wanted to know why he thought Matt's tumor warranted a different pathology diagnoses. So, now we are on the hunt for a 3rd pathologist to give another opinion. We are hoping there is someone at Mass General or something, since having Diana here is making me homesick for Boston! It would be a good excuse to take a fall vacation to New England (never mind the fact that we don't actually have to be present to get the pathology reviewed...)! :-)

So, that was our day. Matt had another day of feeling well so I'm going to send him to school tomorrow. Hopefully he continues to do well. We also find out counts tomorrow, so we'll see exactly how this round of chemo. is affecting him.

Love,
-Alli

Quick Update (GREAT day!)

Today I didn't send Matt to school and also didn't give him any anti-nausea meds. Unfortunately, the only way to really see whether he needs them is to not give them to him (you usually know pretty quick if they are still needed)! He has done FAN