So Tuesday I went most of the day to Primary's to get the preliminary biopsy results and meet with oncology and cardiology. We did more blood tests and an echo too. The biopsy showed PTLD in his stomach, but I think that was the only place they found it, we don't have the finalized report yet though. I thought that would be great news but the oncologist said with his blood count that high it just means the cancer has moved elsewhere in his body. She decided we should start a 6-month chemo treatment plan, with the first infusion this coming Tuesday. She told me all the risks etc and I was pretty freaked out. I came home and talked to Cody and he became completely dysfunctional. He closed up, went into a shell, and I was worried about him. I don't think he had a good feeling about starting the chemo right now and pretty much told me so. I didn't know what to do and ended up staying up late and falling asleep on the couch. Yesterday morning I was off to a dr appt for myself and Cody stayed home from work to help with the kids for me. As I was driving, our cardiologist called. The chemo wasn't sitting right with her either, and she did some research into Ben's chart and thinks she came up with a pattern we didn't realize before. She suggested we go even lower, to nearly nothing!, on his only anti-rejection medicine we haven't stopped already, to bring his own immune system back to see if that will fight this. She asked if we would be willing to give it up to two months to see if it would help. It's a risk. Certainly the PTLD could get much worse and not respond, his immune system could be too out of practice & suppressed to do it's job right, especially now that he's developed the autoimmune neutropenia too, or even worse, his heart could reject. That would be really bad. But she said she would monitor his heart really closely with more frequent visits and blood draws (more frequent than we already do? Holy Cow!) and that if there is any sign he isn't responding, it's getting worse, or he goes into rejection we can go right to the chemo. That is always on the table. So I went to my appt and came home to talk with Cody. He said let's follow her advice for now, and then next Friday, the 20th, we are going to go to the temple to pray about it. In some ways I think the chemo would be safer, since this particular chemo is what they use for rejection so it won't really hurt his heart. But of course, all of the yucky side effects and risks are scary. But I wonder if with the chemo there is a greater chance of solving the problem. But at what cost? I don't know what is best. Anyway, so there is where we sit right now. He looks good and is acting pretty good too. We'll see how this goes. Thanks for checking up on us!
3 comments:
I can't imagine what your going through right now. Trying to decide whats best for Ben for the cancer and his heart. Why does such a sweet little boy have to go through so much? Truly a special child from heavenly Father who was willing to come down here to do it! You are all amazing and I pray that you receive the answers you need. I"m here for you if you need anything and I hope and pray all goes well the next 2 weeks while he goes off meds. Love you!
I'm always like reading the updates on your blog about darling Ben. I am so sorry that you even have to go through it though. You both are such strong people and I'm sure that you'll make the right decision for Ben. You're awesome!!
I've been wondering what you found out, so thanks for keeping us posted. Hopefully this course is the best for Ben and he has optimal results without having to do chemo. I'm glad he seems to be doing ok, he's one amazing little boy and so are you and Cody. You guys have been thru so much ad continue to amaze me. You're in my prayers.
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