I’m not sure where to start. Our hope has been shattered completely today. The MRI showed that while the tumor in his brainstem has not changed, it showed there are many new tumors in the top of his brain, which are causing him to be very sleepy. This only happens in about 6% of brainstem tumor patients. He may be awake and alert for short periods but will be sleepy most of the time and the periods of alertness will lessen and shorten as time goes on. Our goal is to get his mouth/throat ulcers under control, then bring him home on hospice to keep him the most comfortable we can and just love him. He has said several times over the past few days things like “I’m going to die” and last night “I just want to go to Heaven, it’s probably a lot better there”. I told him “It is, it’s the most beautiful wonderful place in the whole world”. Although we have not told him, I feel he knows what his future holds. I told him “I wish I could take all of your pain so you wouldn’t have any”, he told me “I will slap you in the face, you don’t want to die”. Truth is, I do want to die and go to Heaven with him. How do I stay on this earth when such a huge part of me will be gone? Payton does not deserve this. He is the most loving, caring, smart 7 year old I know. He is perfectly perfect to me, and I want to keep him forever but I don’t want him to be in pain. With the new tumors making him sleepy a lot, he probably won’t notice his functions leaving him one by one as much. These tumors are a blessing in an evil disguise. He is very sad and wants to go home. He misses his family and his puppy. We want to bring him home of course, but not until they can get his ulcers under control.
“John 14:1-4 ‘Let not your hearts be troubled. Believe in God; believe also in me. In my Father’s house are many rooms. If it were not so, would I have told you that I go to prepare a place for you? And if I go and prepare a place for you, I will come again and will take you to myself, that where I am you may be also. And you know the way to where I am going.’”
Payton Strong 