Tomorrow is an enormous milestone for Kate and for our family. Tomorrow marks the day we will have achieved the phase of treatment we call maintenance…the LAST phase. Yes, it’s 16 months long and yes, she’ll still be at the clinic weekly. But after that? WE’LL BE DONE! “Maintenance” just kind of says it all, doesn’t it? We are, in essence, maintaining her remission.
As of today, Kate has endured 8 months and 20 days of treatment and has done so with amazing grace and strength. We have been tremendously fortunate during her journey thus far. She was diagnosed early and, while she was given a high-risk classification, she was officially in remission with ZERO residual disease after 32 days. Many children don’t achieve this important step or, have too-high residual disease remaining and wind up having to repeat the grueling induction phase, sometimes also adding radiation into their treatment plan. Kate has responded to chemo very well and has been right where the doctors want her count-wise the majority of the time. She has turned into a very different child than the one diagnosed last summer. While it’s painful to realize some of the reasons behind those changes, we could never express the pride we feel in who she is becoming.
The next 16 months on her protocol will look like this:
Day 1 of each 21 day cycle will include accessing her port, a counts check followed by Vincristine & Methotrexate chemo. That night, she’ll begin 14 days of 6MP, her oral chemo. The doses of Methotrexate & 6MP will adjust according to how well she is handling each; she is currently on 120% max dose of 6MP and will be having her Methotrexate dose increased starting today, too.
Days 2-6 of each 21 day cycle will have her on Dexamethasone, her steroid, which will be 2/3 less the dose that she’s been on.
Weekly for the remaining 16 months will involve a counts check & Methotrexate chemo. There are two ways she can get this done: 1) by a finger poke CBC and a shot in her thigh OR 2) by accessing her port. She will also continue to get weekly Dapsone, an oral antibiotic. She’ll continue to take Marinol twice a day until her appetite returns (hopefully soon) since she is no longer receiving Oncaspar. She will also get spinal taps every 12 weeks to monitor said maintenance.
It really HAS to get easier, right? Theoretically, she’ll be feeling better without Oncaspar and reducing the steroids will hopefully prove to be the big improvement we’ve been praying for. Her hair will continue to grow back, she’ll have birthday parties and she will eventually even get to play with friends. She will start to live life again, develop her social skills and bounce back from this detour no one wanted to take. We will still be on guarded watch every day…making sure we stay away from fevers, infections and the like. Any of that can derail our progress and delay her treatment. September 16, 2015 is etched in stone on our minds and we really want to see to it that we stay on track.
This is far from over, but it’s also so, so far from where we started.
“Through chaos as it swirls, it’s us against the world.” ~Coldplay