Friday, July 30, 2010

I suppose I have to update.......

I have been a slacker about updating my blog.  My friend Liz said she hoped it was because our life was humming along so swimmingly that we had nothing to update.  That actually wasn't too far from the truth!  We had an awesome 18 month run of things going well - better than we could have imagined 3 years ago.  Matt had SIX MRI's over 18 months that were stable and beautiful and perfect.

Tuesday that all changed. :(  The MRI itself was horrible.  They had a difficult time putting in the IV and had to attempt in both arms before finally getting it in.  Then Matt threw up in the MRI machine (again).  He is quite sensitive to the contrast and it tends to make him feel nauseous.  Then, the worst part of all came when we went in to see Dr.Walker and hear the results.  The tumor has grown.  A lot.  In just 3 months, one view showed the tumor had doubled in size.

Our visit to PCMC turned into a whirlwind while we were squeezed into an appointment with oncology.  One highlight of the experience was that we met the brand new Neuro-oncologist.  He recently came to PCMC from California and I liked him very much.  He was extremely thorough and had a fantastic accent (always a bonus.  LOL!)  Seriously, he made us feel very comfortable.  He was very knowledgeable and interested in Matt's case.  I am anxious to hear his recommendations about the treatment plan for Matt.  It looks like radiation is the next step, for sure, followed by chemotherapy.  We will see how intense the chemo will be.

So, right now we are busily, patiently, waiting.  We have an appointment next Wednesday with the head of the brain tumor program at Huntsman cancer institute who also chairs the department of radiation oncology.  I have also felt that I needed to get Matt's stuff sent to a pediatric brain tumor consortium hospital that does proton beam radiation.  Protons are sort of the newest thing in radiation.  I don't know if Matt will be a candidate, or even if protons are worth it if he is eligible.  But, I left a message today for the doctors in Boston.  For my own peace of mind, I need to be sure that we are doing the best thing for Matt in terms of radiation.  Your body can only tolerate so much radiation, so radiation is a one time deal.  I feel a lot of pressure to do everything JUST RIGHT.  Should we radiate the tumor bed only or add the ventricles?  Do we radiate the entire brain and spine, just to be safe?  Do we use proton beam radiation?  Is IMRT okay?  What if we just do lateral?  What are the pros and cons of each type?  Is it appropriate to do a combination of all of the above for different parts of his brain?  Sheesh.  I should've become a doctor! :)

So, unfortunately, there is the update.  It's not the update I would like to be writing.  However, I have to keep reminding myself that this is exactly what we expected the treatment plan to be when Matt was diagnosed 3 years ago (almost to the day!)  We have been able to stave off radiation and avoid radiating a 9 year old brain.  It is a blessing that his brain had 3 more years to develop.  Now we just need to continue treatment and pick up where we left off.  Am I looking forward to spending 6 weeks away from home?  No.  Am I looking forward to another year+ of chemotherapy?  No.  Am I thankful that we live in a time and a place where these options are available?  Absolutely!  Life is still good even when it's not perfect and I am so glad to have had these wonderful, treatment free childhood years for my Matt!

Thursday, July 22, 2010

Thank you, GH, for giving me my son back!

Finally, finally, FINALLY, Matt was approved to start Growth Hormone.  His last bloodwork came back with his GH at an 88.  Boys Matt's age should have GH somewhere in the 300-400 range.  While Matt is a big kid, he hasn't grown very much at all in two years - and this during a time when boys should be growing several inches per year!  Our biggest reasons for wanting to get Matt on GH were not so much height, but rather:

More enegry
Better muscle tone
General sense of well-being
Improved blood sugar
Better management of cholesterol
Weight management (hopefully!)

Matt's energy level has been very low.  He is always a good sport to exercise or come along with us whenever we are doing something active, but he would frequently fall asleep or become extremely fatigued after only a short amount of activity.  Of course, part of this is related to his weight, but his symptoms are more severe than another overweight child.  He also has such low muscle tone that it is difficult for him to move his body in normal ways.  For instance, he can barely pull himself up into the Jeep.  He cannot pull himself up into the tube when we are out boating and he can't pull himself up out of a swimming pool - all very normal things 11 year old boys should be able to do.  This feeling of lethargy and general ickyness has been a real challenge!  Again, it's not that Matt is unwilling to do any of these things, it's that when he does do these things, you can tell it's truly a miserable and uncomfortable experience for him.  Also, at his last Pediatrician visit, they checked his cholesterol level.  It was so high it was undetectable on their machine.  It wasn't until we actually received the Growth hormone and I was looking over all of the information that I learned GH plays a critical role in managing cholesterol and blood sugar!  Yay!  I am anxious to see how GH helps with each of these issues but it already seems to be making a difference.  Matt is wanting to go outside and play without us prodding.  He is trying to exercise and he and I are actually 'training' for a 5K!  We are using the 'couch to 5K' program and amazingly, he seems to be doing fine with it!  He hasn't needed a nap on days we run/walk.

Today I took my kids, along with my 2 sisters in law and their kids to a new 'splash pad' park in the next town over.  Matthew was in a good mood and was running through the sprinklers and having a wonderful time.  I actually got all teary watching him.  He was just enjoying the sprinklers with a big smile, but he was doing something active and something fun and he was enjoying the experience. 

Thank you Growth Hormone - I really feel like you are helping me to get my little boy back!