Striving for balance and running out of chocolate

The recent lab results are back and Jack’s antibody titers continue to decrease. Still not where we need to be but down enough for our oncologist and geneticist to take away the booster drugs (the big guns that we dislike) and begin the maintenance plan. . The team is confidence the titers will continue to move downward towards normalization. The maintenance protocol will include monthly chemo 1 day and IVIG the day after. He will continue weekly methotrexate and bactrim. And of course his ERT, which I believe is beginning to work again!
This month we will take Jack in for an ultrasound to measure Jacks liver and spleen size. These results will be compared to August findings to help determine if enzyme is helping.
Im also beginning to schedule Jack’s “regular testing” that we have dismissed since we moved here. Hearing test, vision exam, dental exam, ortho, ENT, Neuro, and cardiology. It has been extremely challenging for me to juggle this new chemo schedule and the “normal” life issues of MPS. Now that we will be on a steady schedule I feel I can stop the juggling act and find some balance. Maybe? Is there a sense of balance when you are fighting for your child’s life?
As Jack’s antibodies diminish the thought of fighting for intrathecal drug resurfaces and swarms my head and heart…I need some chocolate!

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