Tummy Issues

2-23-14 Lilly started having severe stomach pains Sunday night. So painful that she was wailing and crying. I felt so bad for her. I didn't know how to help her. I called the on-call oncologist. I told them what was going on. They said it sounded like she needed to be seen, but it wasn't an emergency. They told me to call first thing Monday morning and talk to the doctors in clinic. It was a long night. Lilly couldn't pee. She struggled pooping. She just hurt.

2-24-14 I called the clinic in the morning and they decided she needed to be seen. We headed right up there. When they first assessed her, they noticed she had splotchy hands and Lilly said they kind of itched/burned. They said that was most likely a mild reaction to her antibiotic. We stopped that one and they gave her a different one. No more at-home antibiotics. Yahoo! (at least for now) It was a pain. She was also low on platelets, so she got another transfusion. They sent us down to radiology for an x-ray of her abdomen. She had an impacted colon. No wonder she couldn't pee very well or poop. She was majorly backed up. Guess what that meant? Yep - we got admitted AGAIN! 3 times in 12 days.... Really? I'm glad we took her in because she was in so much pain, but I thought ALL Leukemia was more of an out-patient thing rather than an in-patient thing... We needed to get her issue fixed though.

Waiting to get an x-ray of her abdomen.

Lilly had two options of how to get the poop to come out. They could either put an NG tube in her nose down to her stomach and pump her full of medicine that would make her poop, or she could drink a bunch of miralax and wait for it to do it's magic. She chose the latter one. No way were they going to put a tube in her nose. No way. I was surprised and shocked at how much miralax Lilly had to drink. And this was the industrial strength too. Not the kind we have at home. She had to drink 3 1/2 mugs (you know the ones you get at the hospital when you have a baby - yeah like those but just a tiny bit smaller) in a 4 hour period. Holy cow that's a lot. That's a lot for even an adult. But for a little 40 pound kid it's killer. She did it. It was hard, but she did it. We went to bed around midnight after celebrating her success. Guess what? We got woken up again at 2:30 and were told we had to do it all over again. Lilly was so upset. She thought she was done. She kind of had a 'roid rage' where the steroids make her go crazy and she's slightly out of control, but then she started drinking again like a good girl. We couldn't go home the next day until what went in clear - came out clear too. Crazy. Talk about cleaning you out completely. After a painful painful night, she felt much better the next day. She's always had a constipation problem, even before all of this has happened. But, now she also has some medications that make her constipated as well so we have issues. We have to keep up on the miralax at home so this doesn't happen again. Not a fun experience.

There was a little silver lining through this most recent stay at the hospital. Dr. Raetz, one of the oncologists, shared some good news with us. They got the results back from her 8 day blood test and it showed no detectable signs of Leukemia!! That was music to my ears!! She said it's very rare to have a negative blood test on day 8. Usually it's around day 28. We are so grateful for the prayers that have been said on Lilly's behalf. Since there is no detectable sign of Leukemia in Lilly's body, you can say she's in remission. But, our journey is still just beginning. We still have to do chemo treatments and spinal taps and bone marrow biopsies for the next 2-2 1/2 years so the leukemia doesn't come back. Her body still doesn't know how to make the right kind of white blood cells yet. There's still much to be done, but we are grateful we are heading in the right direction.