I know that our Team Angel supporters will take some time to process the following post as we have taken a few days to process. One gift in all of Angels medical care is that decisions have been fairly straight forward. He had no small intestine = he needed TPN/IV nutrition to survive. He was in liver failure = he needed a transplant. He was in rejection = needed anti rejection regimen. So little is known about this cancer and what IS known is very hard. And that makes decisions feel impossible. Our meeting with the teams of doctors last week took us somewhat by surprise. We were expecting to talk mostly about whether or not to do radiation. What it turned out to be was a review of the statistics and prognosis of this cancer. It felt somewhat similar to the first time he was diagnosed: very grim. The seriousness of the cancer has not changed. Angel is a 5 organ transplant patient whose treatment is very fragile... Add a lymphoma that is rare and difficult to beat and you have a situation that is uncharted. You cant treat the way you would normally treat a very serious lymphoma that has spread to the brain and spinal fluid. So we treat with doctors best guesses, carefully manage his transplanted organs, and HOPE that the treatment is effective. At this time all his scans are not showing cancer. However, the oncologist cannot reassure us it is gone. Lymphoma often hides in the meninges of the brain - which cannot be seen on scans. Also, there is a small area lighting up in his bowel on the PET scan. It could just be inflammation.... but it COULD also be cancer. We cannot get to those areas. Originally they recommended 4 rounds of chemo. But when the cerebrospinal fluid was positive they changed to 6 rounds and craniospinal radiation. After the 3rd round of chemo almost took his life they backed off to 4 rounds and radiation. BECAUSE he did so well with round 4 doing reduced doses and prophylactic antibiotics and antifungals, they are once again recommending 6 rounds. The most difficult part is that the oncologist feels that, even with 2 more rounds and radiation we are most likely postponing the inevitable. As parents... you wonder if doing more chemo is worth the effort if you may not even cure the cancer. If you are Angel???? Well, that is whose opinion matters. Angel is fourteen years old and has PLENTY of very clear, black and white opinions. He does not mince words nor does he change his opinion based on what others may think or feel. Even his parents. We gave him the information in bits and pieces. First the concrete of the doctors want to do more chemo. And more of the whys and such as he was ready. It should no longer come as a surprise to anyone that he wants to do more chemo. When asked why he said Because I have to TRY to beat the cancer so I can LIVE. I am a fighter. Thats what I do. And I can do this. Another friend whose husband is battling a cancer with 3% survival rate said SOMEONE has to be in the 3%! And we agree. Knowing Angel, it will be him. And if not? He will go down trying. After many in-depth conversations with Angel one thing became very clear.... postponing the inevitable was not a threat to him as it was to us.... because the PROCESS of postponing was what he is living for. Being in the hospital is still a quality of life that HE feels is worth fighting for. He said My friends are here. I love my nurses. People visit me. I get to play video games and do things I love. Angel is not fighting for a life that is out of reach. He is not fighting for something ahead. He is fighting just to see tomorrow. He is fighting for the life he is living right now - even if it is in the hospital for months more. And if chemo gives him 3 more months of life to live - wherever and however that may be - he is going to do it or die trying. We are Angels parents. But we are not Angel. What matters is HIS perception, what HE values, how HE wants to live his life. He does NOT perceive himself as suffering. Angel can be vomiting and put down the bucket when someone asks him Are you feeling sick, Angel? and he will say No, Im good. WITH THE BUCKET still at his side. Because, in that moment, he is not sick. He literally lives to find the joy in the moment that he is IN. How can we do anything but present what we know about this cancer, about the possibilities, make sure that he fully understands and then allow him to choose his own path? Angel has chosen to continue to fight. They were very clear that if we stopped treatment at this point that there are no more options. This would be the end of the fight. No more scans or treatments available. Just respond to symptoms if/when the cancer returned and make him comfortable. And they were also clear that 2 more rounds and radiation are not a sure-thing either. At minimum, a life prolonging effort with a glimmer of hope of cure. We have shared before... but Angel will never be cured. The nature of his 5 organ transplant statistically is that he will die of complications from it. (One of which being this lymphoma he is fighting.) We have known this since we took him home at 3 years old and we live with that understanding always. If it is not lymphoma it will be rejection, or viral process, or sepsis, or infection..... or or or. His medical condition outside of lymphoma is life-limiting. This is what Angel has lived with all of his life and, I think, thats why fighting for his life is just what he knows and what he does. We believe he can beat this. But we also believe that there is a grand plan for his life and NOTHING can deviate from that plan. This may be what takes his life. Or it may not. We dont pray for a miraculous healing (although we dont mind if you do!). We pray for joy along the way. For continuing of that INDOMITABLE spirit. For peace as we stand beside him in the choices he has made. For as little suffering as possible. For strength as we support our child. For wisdom as parents to lead all 3 of our kids through all of this. For comfort when the pain does come - and it does. Our request for prayer these next days is for a refueling in our hearts and bodies as we prepare for the next round of chemo and many more weeks in the hospital. It has been a very, very long 15 weeks in the hospital and we are worn down. Not quite as patient. Easily frustrated by the hospital life. Weary of depending on others. But we plan on refueling and preparing for the next part of this battle. Before I close, (wow, what a long post) I want to say what an incredible hospital we have. My heart swells with emotion as I type... To make being in the hospital SO positive to a child that it is worth living for... That fighting to live - even if it means living in a hospital - is worth it because of the people that surround Angel and love him there... That is something you cannot train into staff. You cannot PAY for this kind of care. It is his second home. His family. His nurse Aunties, doting administration, doctors that see the big picture, and staff that surround him and make him feel safe and loved. It takes a village. And not only is our family behind him with everything we have, his hospital is too. Truly, truly amazing. Thank you, Team Angel, for being a part of this village too. We are so grateful.
Posted on: Mon, 07 Jul 2014 05:49:47 +0000
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