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

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

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

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

-Alli

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

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

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

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







Matt and Will



Will cheering after a basket


The boys


The true sign of SUCCESS!!

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

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

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

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

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

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

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

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

Love,
-Alli

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

Merry Christmas and Happy New Year!

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

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

Christmas Eve in new jammies!

Matt being suprised by his new IPOD

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

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

Andrew with his new 'Ben 10' watch


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

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

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

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

Smiling at Daddy

Check out those cheeks!!