1/15/19 Oncology Unit

Last Thursday night, Reese had a little bit of increased tummy pain. Thursdays are her long clinic day, and the day we wean a few of her meds, so the doctors added one back on (Prevacid) to see if it would help. On Friday her pain continued, so we went back up on another med (Gabapentin.) On Saturday she had a great morning so we spent it at the beach with her sisters. It was sunny and 60, so we took advantage of the opportunity to let her experience the outside world, the world that was kept from her for 8 months. Her and Quinn danced and she walked around pointing at shells and rocks that she wanted me or Chris to pick up for her (we won’t let her play in the sand, yet.) We watched crab hunters, dozens of surfers, and got a little natural vitamin D. Shortly after we returned from the beach, Claire got the stomach flu. The one that seems to run through every family but ours. A virus has not hit our household in a year (because we’ve live in this unnatural, strict isolation.) So here it was, our first outpatient hurdle. How did Claire get it… an elevator button? The soles of her shoes? We will never know. We essentially live in a dorm situation, in very tight quarters, so we quarantined Claire to our only bathroom (to protect not only Reese, but other kids as well) and tried to think of a solution. How to keep Reese safe. The Family House was more than accommodating, as they let me, Quinn, and Reese move into the lounge for the evening. It was a little crazy and we thought it worked. Chris stayed with Claire and gave her the best, most loving care. The next day was Sunday. It started ok… Claire’s stomach flu lasted exactly 8 hours, how lovely to have a functioning immune system, but we kept her in isolation for 24 hours. Around dinner time Reese’s stomach pain turned to vomiting, we knew what we were dealing with… Reese’s first new infection since November of ’17, pre JMML. We talked to our on-call doc many times. She didn’t have a fever and our main objective was to keep Reese safe enough that she didn’t need to go to the ER. The way to do this was fluids. She needs 40 ounces of fluid a day. (Yes, that seems like a lot.) Once she was vomiting a lot our goal was half. It was clear at 9pm that she was not going to keep down enough fluids, so off to the emergency room we went. My parents quickly drove over. At the ER she received a fluid bolus, blood tests, and they sent her home. We got back around 11:30pm. We put Reese to bed at midnight and her condition continued to worsen. She was severely ill, screaming in pain, vomiting every few minutes, from 12am-6am. It was just awful. She now had a fever. My parents rushed back over and we returned to the ER, and this time, they admitted her. Reese needed a stress dose of hyrocortisone. Her body has no fight or flight response, because she was on high dose steroids for many months, so her adrenal glands are shut down. So when her body is stressed, she needs assistance. This dose was given at 7am and within minutes she stopped vomiting, shaking, and screaming. Thank god. From 6:30-2:30ish she was in the emergency room. When a BMT patient has a fever it is dangerous and many tests need to be run. These blood tests started in the ER and continued into the day. Because neither of us slept, at all, Reese was exhausted. She slept right through her transfer up to the 6th floor. There was a plumbing problem in the BMT, this is what delayed us in the ER for so long, so we transferred up to Oncology. Of course I’d rather be with our team, but here we still see the same doctors and BMT certified nurses, our “friends”. Also, it’s a different experience for Reese (“this is where kids go for medicine, not to live.”) By evening Reese seemed to be doing much better.
So what happens when a BMT kid gets a common virus like the stomach flu? Well, Reese’s course has been very different than Claire’s, more severe. Also, we need to worry about a stomach virus triggering a flare of her gut gvhd. So far, we believe this is NOT the case. Reese seems to be recovering. One of our docs congratulated us on making it 3 1/2 weeks on the outside without an inpatient stay, and we need to be realistic and realize that this won’t be our last. But we will take each new day in stride and just keep doing our best. I pray that God protect Reese through this new hurdle, and that her gvhd remains under control.

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