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!

9 comments:

The Huffies said...

You have got the best attitude - I wish I was more like you! I'm so sad that this is happening, but I am glad that he did not have to radiation as a young child. Keep us posted on what's going on and where you'll be. We pray for you daily!

Katie said...

I'm so sad to hear this! You guys are in our thoughts and prayers. {{{hugs}}}

The Uffens Family said...

We are so grateful that things have gone well so far for Matt. He is such a trooper, and his story has been an inspiration for me to follow. I hope that all goes well in whatever decisions you are advised and GUIDED to make. Let us know if you ever need a babysitter for a day - my kids would love to play if you both need to be there to assist Matt!!

Jessie said...

LOOOTS of love and prayers coming your way. I do love your Matt. What a thing for a boy to endure (and a mom, of course!). I love that picture, too. It's SO cute.

We sure love you guys.

Amanda said...

So sorry about the news. We will keep you in our prayers as you guys battle all of the challenges over the next while. You are an amazing mom Allison!

Karen said...

My heart just sinks to my stomach hearing your news. I had a good cry when I read it on fb the other day.
I was hoping you would never have to use that "Radiation" card, but at least it is there. Because of your situation, you see where you have been blessed and given so many tender mercies in your trials. We both know you have experienced miracles. I pray that they continue as you head down another scary road.
I am sure you already know, you are being watched over and guided through all of this. I will keep a prayer in my heart for you, Matt, and your precious family.

You know how to reach me if you need a shoulder or a helping hand!

Love ya! Karen

Deborah said...

I am so sorry. Please let us know if we can do anything.

Handsfullmom said...

Oh no! My heart sunk as I read this. I will keep you in my prayers.

Tara Bergsjo said...

I am so sorry! I will keep your beautiful family in my prayers.