Today, we finally went to the long-term survivor clinic with Dante. He is officially 8 years post-treatment and our protocol was completed a few years ago, so we are down to just annual check ups. Hard to start writing about this again, as I know other children still dealing with cancer and treatments. I melt a bit of ice cream for them often and am hopeful that their "new normal" will become an "old normal" soon.
All Children's has recently set up a separate clinic visit for long- term survivors. They had been telling us about this plan for a while, but I believe it just started a couple of years ago. This visit starts with a discussion with a social worker to be sure we are all doing well, help us with any resources we might need and a focus on making sure Dante is successful in school. I told her we would love to know a way to help fund new hearing aids for Dante - those things are crazy expensive and he's had the same pair since 2007! As Dante moves into middle school next year, his hearing aids will play an important role in keeping him on track in school.
We then met with Claudia (who was at the clinic throughout our treatments) who provided us with documentation about cumulative doses of chemotherapy, surgeries and other information that might be useful for other doctors as Dante gets older. She spent a long time reviewing all the possible late term side effects of his treatment. This consisted of lots of maybes, some with high risk and some with a low risk. (Certainly brought back those old feelings of anxiety and anticipation.) It was useful information to know what to look out for and what tests need to be done. Dante does need a pulmonary function test, as one of the drugs, Bleomycin, can cause lung damage, so we want to keep an eye on that. The only definite side effect he has so far is the hearing loss. Probably the one we always worry about is the high risk of a secondary cancer, like Leukemia, due to his treatment. He is at a medium risk for that, but the range is from 1 to 10 years post-chemo. (2 years to go!) They also provided us with several packets detailing other side effects.
We were discussing that the protocol was relatively new when Dante started it and the initial children to receive it were only about 5 years prior to Dante. Claudia couldn't think of anyone in her 12 years with All Children's who had the same cancer. The small pool of comparison patients made for lots of maybes! But it was extremely helpful to get the information we did receive.
Dante had to have blood drawn and that was pretty traumatic for him. He still gets himself worked up like crazy over needles. Poor guy. (I did the same thing as a kid, so I get it!) The nurse was really patient and awesome with him. We are so thankful for all the nurses in the oncology clinic. They've always been so supportive and helpful. We will get those results in a couple of weeks, but all signs show they should be normal.
These visits will continue annually or bi-annually until he turns 21. Since he has regular checkups with a doctor, they are not as concerned about him coming as frequent. The main thing they want to know is that he is being monitored. I'm pretty sure Dr. Patranella is always on the look-out for us!
One of the things the social worker asked us was about how this experience had changed us. Chris said, "It makes it easier to tell people 'no'." I told her that I will never forget being completely stressed out over a messy house (with a 6 week old baby in my arms) when the phone rang telling us about the tumors. Those petty things that we let get to us just don't matter in the grand scheme of life. And life is good. :)
Thank you everyone for so much support over the years!