“We make the journey by taking each day step by step and then repeating it again and again until we reach our destination.” – Joseph B. Wirthlin
When does the blueberry waffles, sun on your face and seeing your pets become more important? I was asked this question tonight. This last month has been devastatingly hard on Tucker’s body. His vital organs are taking a beating, his bone marrow is empty and his blood is infected with a yeast infection. The cancer is killing him and so is the treatment. When do you say enough is enough? How does a mother logically do that? It is a parents instinct to protect and help their child but when the doctors start having quality of life conversations with you it becomes very sobering.
(Tucker is battling a yeast infection in his blood.)
What we know is that Tucker is very sick. What we do not know is how long it will take for him to get better and if his body will hold up to the storm. What we are doing is praying and praying often. Taking it day by day. Tucker is having good days and bad days. He is frustrated by the feeling of being trap in the hospital and he is scared to die. He wants to push pause on the treatment because in his words he says it feels like they are torturing him but knows that it could make things worse for him if he does. Today he had a complete melt down emotionally, he said he was done, he just wanted to go home and eat whatever he wanted, drink as much as he wanted. But he also said that he doesn’t want to give up hope. He said he doesn’t want to do anything that might make things worse. Once he had calmed down, took a nap and watched the movie Goonies. I had a talk with him about his treatment and how he felt about it. He said he is not ready to give up fighting that he just wants to get better. I explained that it was up to him, that we could go home and do pain meds and TPN there. I told him that he owns his life and no matter what he wanted to do I would stand by him. I would let him make the choices. So for as long as he wants to battle I will go into the battlefield with him and if he ever got to the point that he wanted to stop I would respect that choice.
Tucker’s donor has been found. He is a full match and on hold for him. But Tucker has a lot of healing to do before we could proceed with transplant. I have been reading the book on stem cell transplants and found a quote in it that hit home with me for what we are going through. Because Tucker is under 14, I have to make the “final decision” for him as to whether or not to continue with treatment. The mother said; “I knew it was a do or die situation but I kept asking myself, ‘Do I really have the right to decide his life?’ I want to keep him with me as long as possible. Am I deciding what’s best for me or for him?” Oh how I can relate…..painfully relate.
(Studying Stem Cell Transplants Info)
So our goal right now is to find a way to give Tucker a few of the things he really wants. To boost his spirits and to let him know that he is being heard. We are trying to be extra sensitive to helping him feel like he has some control over his life and have planned a trip outside into the sunshine tomorrow to drive the RC Cars around. We may even sneak Stanley the cat and Pippa the doxie into pay a visit over the weekend. Anything to bring him a few extra smiles and recharge his spirits.
Tucker is a brave and strong boy, he is wise beyond his years and has taught me more than anything, anyone or any book ever could have. So as we continue to take it day by day, not sure if it will be a good one or a bad one. We will embrace the good ones and hold onto faith and hope that there will be many more. With a promise that we will do whatever Tucker needs us to do.