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.