Saturday, March 10, 2012

Living life: McKaleigh's Hospital Adventure

It all started on New Year's Day. McKaleigh was running a fever and did not want to get up and play at all. She didn't even want to get up to do little things, she just wanted to stay in bed. We figured it was just a virus so we watched and waited for the first two days. At this time we were also packing up and getting ready to move to my hometown, since Michael is going to Korea for a year. Since we were going to be travelling cross country I decided to take her to the doctor to make sure she didn't have something more serious that would need medicine. She had randomly been complaining of pain, which was my indicator that it wasn't just a virus.

Getting extra rest in the hotel room during our move
We arrived at the hospital and the experience was horrendous. They did every possible thing they could have done, and they were not gentle about it. McKaleigh had blood drawn, an in and out catheter to get a urine sample, nose swab to check for flu, plus suppositories to bring down her fever. Like I said, it was absolutely horrendous. A few hours later we got the preliminary results and everything was normal! They told us it was probably just a virus and we would have to wait it out.

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.
This is where it starts to get scary. They came back with the scans and they had found a mass on McKaleigh's liver. The ultrasound didn't show a very good picture, but you could definitely see the mass. Next step was to get a CT scan, which McKaleigh did not like at all. After getting a better look they came to the conclusion that it was a hepatoblastoma, which essentially was telling me she had cancer. That was a really rough day, I cried pretty much anytime I was alone, and just had this horrible pit in my gut.

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
It's a benign tumor, technically, in that it isn't cancerous. But it's a benign tumor that can behave malignantly. If we had never done anything, there is a chance it would have grown and taken over her insides. Because of the risk, the advice was to have it completely removed. An MRI was done first to get an even better look. Then we started the process of getting Michael here for the surgery, since he's stationed in Korea now.

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
Now we've been home for a little over a week, she's doing so much better, although still crankier than usual. We had an appointment this week and the surgeon said that medically speaking she has made a full recovery and that the worst is behind us. I heard back from our oncologist yesterday with the results from pathology. The findings were consistent with what they thought it would be, but they could not find a cause for the inflammation. We were told there would be a good chance of never knowing what caused it, so that's not a surprise. She shouldn't need any further special medical treatment. I will have to take her in for ultrasounds and blood work every 3 months for the next year, because of the chance that the tumor might grow back, though.

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:). 

Adelaide giving her sister hugs while she heals:)

Note: Please forgive the poor quality of the pictures, they were taken with my phone. I haven't been able to find my camera since the move!

No comments: