|Getting extra rest in the hotel room during our move|
Fast forward a week, we have moved to Iowa, McKaleigh is still sick. Over the first three weeks of the month she showed improvements, like regaining her appetite and having fewer fevers. Over all she was still sick, having fevers and not wanting to move, not even to walk a short distance. So at week three, I made an appointment with a pediatrician. (Part of the reason I waited that long was because I knew they would do all of the lab work again and I didn't want to put McKaleigh through all of the discomfort again, if she was getting better.)
Sure enough when we went in her physical exam was normal, and then they did the blood work and got a urine sample. We didn't get results until the next day, and when the pediatrician called she said the results were mostly normal, but there was an elevated level that indicated inflammation somewhere in the body. There wasn't really anything they could do, so we had to go to the children's hospital in the nearest city. We were admitted to the hospital and they basically said we would stay until they figured out what was going on.
I'm going to fast forward again, because we were there for five days, and I'm mostly going to skip over the million times she had to have labwork done. The labwork kept coming back normal, except for the inflammation, but the first day in the hospital there was one other thing. She was anemic when they took her blood, but the labwork from our pediatrician had her at normal numbers one day prior, which meant she had bleeding somewhere and since it wasn't visible the doctor ordered an abdominal ultrasound to see if she had internal bleeding.
|Passing by the time while|
we waited for answers.
Then came the sigh of relief. The surgeon came to consult with the oncologist, he did not think it was a hepatoblastoma. He wasn't exactly sure of what it was, but he said it didn't look like any hepatoblastoma he had seen before, so he wanted to do a biopsy first. We got to go home for the weekend, because all they were doing was giving her fluids, and she appeared to be doing better, hadn't had a single fever. Then we came back on Monday morning for the biopsy. They sedated her for it and afterwards we spent one night in the hospital and then went back home.
The hospital's pathology got back to us before we left and they said it was a hemangioma. Another huge sigh of relief! This would not be cancerous and probably wouldn't require surgery! So we went home thinking all was well and we would just need check ups to keep an eye on it. But thankfully, they also sent the biopsy sample to Mayo for further testing.
It had been a week without any updates when we finally got a call. Our doctor apologized that it had taken so long, but Mayo was taking a really long time to confirm. They said it was not a hemangioma. Instead it was an extremely rare tumor, called an inflammatory myofibroblastic tumor (IMT.) It's not just rare in children, it's rare period, and very very rare in children. In the literature, one review will be about 20 cases a hospital had over a 20 year period. There isn't much known for sure because they don't come up often, but they usually present much like it did with McKaleigh. It starts with the fevers of unknown origin followed up by a scan where they find a tumor on a random part of the body.
|Getting ready to go into surgery|
Michael arrived with plenty of time to spare before the operation. Then two Thursdays ago we went in for the operation. She was in such good spirits and while we had been at home she had started walking again. The surgery was a complete success, they removed about half of her liver. There was some trouble with bleeding and they did have to do a transfusion, but it wasn't anything completely unexpected or out of the ordinary. Then we had a week long stay in the hospital for her recovery.
|Checking out her incision|
There is our whirlwind of a story. It was a very crazy time for all of us, but I'm so glad that we had the children's hospital available to us. They really have taken such great care of McKaleigh. It's good to be home and to have this mostly behind us. Now we just have to make the most of these last couple of days we have with her daddy:).