Transitioning - Message from Andrea January 30, 2010

Posted Jan 30, 2010 1:18am
Today was Julian's final outpatient chemo push. No more chemo!! I remember thinking months ago, when Julian was eyeing Nolan's baseball trophies and he asked when he was ever going to get a trophy, I was determined to get him one for going through all the things he has had to go through. Every child going through cancer treatment deserves a trophy! Well, the nurses beat me to it and presented him with one today that has a big star and is inscribed with, "Congratulations! You Are Our Hero. Love, Your CHOC Oncology Team." I thought that was a very cool thing to do and it is proudly displayed in the center of our mantle. Thank you CHOC doctors, nurses and staff! They are all awesome and such tremendous partners in this process. We won't really have any time to miss them because Julian already has appointments on the books for clinic visits next week and for the weeks thereafter. In fact, he'll be monitored for 10 years. I tried to explain to him that, yes, chemo is done, but he will still be going to CHOC many more times, for a long time.
Up until now, he's had a central line and hasn't had an injection through his skin since Dec '08. Everything goes right into that port which goes directly into a main artery; convenient but always at-risk for infection. He'll have the central line removed in late February. After that, when blood draws are needed or if IV medicines are needed, he'll be poked and he'll probably wonder why we said he was "done." So, we've tried to downplay the end of chemo a bit because truthfully, while he's finished with one phase, he's entering a new phase and each new phase of this journey has its own set of challenges.
He will need brain/spine MRIs every 2-3 months and he had one done yesterday. Praise God, the results show there has been no change since the last one. The longer we can go without any changes, the better! Regarding eating, he still just nibbles about once a day (a few bites of pancakes this morning), but he often will want to try something new (today he said he wants to have some Cheetos; not sure if you would call Cheetos food, but it's something). Once he starts to feel better, we'll really be focusing on foods so he can get that tube out of his nose.
This morning, Rich was encouraging Julian and told him that he'll be doing great things when he grows up. Julian's reply: "Daddy, I'm already doing great things." How true!
God bless you for your prayers and please, please keep them coming! We have many prayer requests; always at the top of the list is that the chemo and radiation will have permanently wiped out the cancer cells and that there will be no secondary malignancy later. We are grateful for your encouragement; your messages are therapeutic and being able to update you is therapeutic. His journey is far from over and we will keep you posted in the weeks and months to come.