Well I’ve shared all the good. But it’s only a true story if I also share the bad and the ugly. And I know this post will get much less attention than fun pictures in Florida. When I tell of happiness and success, I get notifications from my website host boasting thousands of views. Not so when I share the often sad realities of our journey.
Stay with me as we struggle.
Justin started another round of chemo yesterday. He cried in pain as the needle was pushed into his tender hand. He angrily told me to “shut up and leave me alone.” Because in his childish mind, I am partly to blame for allowing this to happen, no matter how many times I tell him the IV medicine is saving his life.
Childhood cancer patients are still treated with adult drugs because research is so underfunded. This is the result of a combination of large doses of methotrexate, vincristine, mecaptapurine and steroids — a sick, despondent kid escaping the reality of how he feels in his Minecrafting abilities.
We also learned yesterday in clinic that even after months of physical therapy, Justin’s legs are not improving. This neuropathy and heel cord tightening is a result of vincristine and causes pain and walking difficulties. Justin spent a good part of his wish trip in a stroller or wheelchair. His doctor and physical therapist have recommended casting of his legs if this cruel side effect does not improve by the coming fall.
This would mean no soccer, no baseball, no running, and limited play for a while. But if we don’t do everything we can to correct the problem, it may mean he would struggle to do those things for the rest of his life.
Making this decisions is just impossible right now.
So I turned to Scripture and let the words of my good friend, King David, wrap me up like a favorite blanket, warming up those places where blood seems to have turned a little colder.
Now I know that the Lord saves his anointed; he answers him from his holy heaven with the saving power of his right hand. Some trust in chariots and some in horses, but we trust in the name of the Lord our God. They are brought to their knees and fall, but we rise up and stand firm. O Lord, save the king! Answer us when we call! Psalm 20:6-9
Indeed you and Justin are fighting a good fight. Praying here for you all!
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