Off Therapy

On Monday the 9th of September, exactly 2 and a half years from diagnosis, Channing had his last oral chemotherapy which means Channing is now officially 'off therapy' (OT).  It was a little weird and surreal.  And for me it didn't change too much.  Now, Kindt gets to go right to sleep instead of waking Chan up to get his meds.  Chan no longer has to stop eating 2 hours before he gets his meds, he can have a cup of milk before bed if he wants.  And I no longer have to bug my husband, sometimes after he falls asleep, to make sure that he gave Chan his meds.  So, our night routine is a little different, and Kindt is really enjoying not having to get up and give Channing meds.

It didn't really hit as reality to me that Channing was done, because I still had to take him to Madison on Wed for his 4 hour IVIG transfusion (to help boost his immunity).  The IVIG is extracted from the plasma from over 1000 blood donors, which makes me VERY appreciative to those that donate blood.  Up until Wed I didn't really know what the plan was for going forward.  You have this step-by-step plan for 2 and a half years. Over 200 pages of information is given at diagnosis which answer just about any question one could have like "if child has this reaction respond like so".  Details and details, nothing is unknown (well except how a child will react, but drug wise and protocol wise its all covered).  Then when you go OT you are given one piece of paper.  One small piece of paper which encompasses the rest of the child's life (at least that's how it felt).  For the first year Chan will get a physical, CBC with diff and platelets every 4-8 weeks.  For the 2nd year every 2 months, 3rd 3 months, 4th 6 months, and 5th year 6-12 months.  Then I believe they are called 'cured' and oncology monitoring is no longer required.

On Wed Chan's oncologist decided that we should schedule Chan's port removal surgery and stop the IVIG trans.  I thought we were going to keep the port in for 6 months and continue the transfusions, in which case I would still feel like we were on therapy because my routine wouldn't change and any illness would still send us to the ER due to the port.  I was a little taken aback, and asked her if she was sure.  She smiled a knowing smile, patted my arm and said 'yes, I am sure'. 

I have huge mixed emotions about this.  I am happy that this chapter is now closed in our lives, but I feel so much anxiety and fear about the future.  Wed was the first time that when the oncologist was giving me Chan's blood work my heart leaped into my throat.  I was scared for a split second about him relapsing.  Only 2 days off Chemo and I was already afraid.  I calmed down quickly and my anxiety probably wasn't noticed but it was scary.  All was well, but I am not sure I can handle that feeling every 2 months, or whenever Chan gets sick, or gets bruised, or anything abnormal happens.  The thought of relapse will always loom.  I will just have to learn to cope with that, and try not be too much of a hypochondriac when it comes to Channing (or even Jakob).  I did ask the oncologist what the rate of relapse and she said its technically 2% but because we don't have a lot of long term results for the trial Chan was on it could be up to a 10% relapse rate.  There are a lot of things to worry about long-term heart problems, liver problems and secondary cancers but for now we won't worry about those unless we have to.  My hope and prayer is that Chan's little body has done enough learning over the last 2 1/2 years that it won't produce those lazy leukemia cells ever again...