I'm sorry I keep disappearing from the blog. We have a lot of changes going on and we all need to adjust to them. Never fear, I will give you an update on the past few days.
We met with the nephrologist last week as expected. When the pediatrician and the liver specialist looked over the MRI they talked mostly about the liver because they knew the nephrologist would see her the next day, but they both commented on the condition of the left kidney. The nephrologist (Dr. M) agreed that it shows significant atrophy. The really scary part, though, is the tumors are back.
The MRI showed a tumor the size of a lemon on Maisie's left kidney.
On Thursday morning she had a PET scan, and thankfully no other tumors came up. The oncologist, Dr. N, who we love and have worked with before, was deeply concerned that they had metastasized in the brain and that was causing or contributing to her hypotonia, eating problems, etc. Thankfully, that's not the case. We scheduled surgery for Friday that went really well. They took out 90% of the tumor and got a solid biopsy. The results haven't come back yet, but the odds that this is cancer are great. A benign tumor cannot metastasize, so the chances of her having four benign tumors in different parts of her body at different times are so slim.
Maisie is still recovering from the operation. She's been in a lot of pain and extremely woozy, but was feeling well enough today to have another PET done. Hopefully this one won't give us anything new and by the end of the week we'll have a plan to get rid of the rest of the tumor (which, against all odds, is benign!).
Now for the good stuff! This is a terrible picture of my ring!! It's so bad, I'm sorry. I'm writing this from the waiting room of radiology. It's perfect and beautiful and we are so happy.
This could be the longest engagement ever because there is no way I'm getting married while Maisie's life is so rocky.
Oh, last thing! Maisie got to 25 pounds! Woo hoo! As soon as we get out of here she'll be getting real food through her tube!
So mostly good news. We've gotten much worse and at this point I'm happy for only okay.
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