The Beginning of the End

“It is not death that a man should fear, but he should fear never beginning to live.” – Marcus Aurelius

Ten months…seems unreal.  Today last year, we had just gotten home from our Make A Wish Trip, Tucker complained of his stomach hurting and was run down.  Easy to blame on a busy vacation, packed with fast food and fun, but I called the oncology clinic anyways.  After going over the symptoms and knowing we were checking into Doernbecher the next day for chemo, we were to watch him closely. Take some zophran, oxy and a heat pack.  If he didn’t improve we would go to the ER. So we snuggled on the couch and Tucker pain subsided.  The next day we checked into the hospital for what we thought would be a typical 4 day stay and Tucker never left.  Our four day plan turned into two months, nearly to the day and I walked out of the hospital, surrounded by family but without my son. 

While today marks Tucker’s 10 month angelversary it also is the anniversary of the beginning of the end for us.  Things started off typical for us. Tucker had a CBC and we discussed the stomach pain, which had come back.  We were excited to be done with intensive treatment and had reviewed our new maintenance plan with Dr. Chang.  We had made it though what was to be the roughest part of Tucker’s treatment or so we thought.  After the CBC came back Dr. Chang was clearly concerned with his white blood count numbers, they were very elevated…a tell tail sign that the leukemia had come back.  Leukemia that returns while you are in an intensive course of treatment is very aggressive and in lay terms has learned how to protect itself from treatment.

All of our plans changed to the point that we didn’t have a plan at all.  Tucker’s stomach pain was from pancreatitis which can be a side effect of chemotherapy and there was nothing we could do about that but manage pain and wait for his body to heal. His kidneys were taking a beating due to the high levels of calcium in his blood stream, which is a result of the t(17;19) translocation in his leukemia. His blood pressure was going through the roof because of pain and the cancer returning. Tucker had gone from a happy boy on vacation a week earlier to a very sick child literally back at square one on this battle for his life. Only his body was weaker from 9 months of chemo and we now knew the chemo wouldn’t work.

I knew the news was terrible when Dr Chang took me into a private room to discuss what he knew.  To tell me that their was not much more they could do to treat Tucker. To tell me once again that my son was not going to survive this cancer.  We had hail mary options that would not necessarily be taken in the hopes of survival but for palliative reasons and to extend Tucker’s life.  We still had hope that Tucker would see a miracle through all of this but as I stood in the hall of Doernbecher, looking out at the bustling city below  feeling alone and trapped in this hell, I knew that I would be spending my last Christmas with my son. I didn’t know how I would tell him that.

What would take place over the next 60 days would push me to the limits of my sanity and to the depths of my fear into a dark pit that is grief…..but it would also reveal to me the meaning of life and that is selfless love at all cost. I would, who was already quite impressed with my young son’s ability to handle such a grown up diagnosis, see a strength, dignity and grace in my 11 year old son that I have never seen in any human being before. I would have some of the hardest gut wrenching conversations with my child as we spoke of his wishes during the rest of his short life and after. I was torn between wanting to do everything and anything to lengthen my son’s life, because I could not bear to lose him, and listening to his desire to no longer suffer.  Treatment was becoming torcher and as much as I couldn’t bear to be without him, I couldn’t bear that either.  I would witness love in it’s purest form when love is all that you have left. Where hope changes and faith is tested.

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