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