The Good, The Bad, The Ugly and The Good Again

The Good: Trip’s master plan worked! We got out of the hospital Sunday morning and had the rest of the day Sunday to enjoy the beautiful, warm day. We played outside. Trip ran, rode his bike & skateboard and we even swam in the hot tub for a little while. In Trip’s words, “Freedom!”

The Bad: Trip is experiencing side effects from the chemo. He has mouth sores and a rash. So far, he hasn’t had many side effects (except for when he was on Ara-C, but seems like everyone has the same flu-like side effect from that drug) other than his blood counts being down and a little fatigue. We were in the hospital playroom last weekend playing with a little boy who had lost his hair (one of about 10 in the room). Trip said to him, “Hey. You don’t have any hair.” The little boy’s face dropped and so did my heart. I immediately said how cool I thought the little boy looks bald. Then I told Trip that he might lose his hair too at some point. Trip got upset and said that he didn’t want to lose his hair. I told him if he lost his hair his daddy is going to shave his head. The other little boy said, “Yeah, my daddy shaved his head too and besides that it will grow back one day.” Over the last year, Trip has seen dozens of kids who are bald from chemotherapy. I don’t know why that day he noticed that one kid is bald. I’m not sure why it upset him so much either, but I hope we have time to prepare him for it in case it does happen.

The Ugly: Trip is the first LCH patient on methotrexate that Dr. Appel has seen develop mouth sores. (He’s been a unique LCH patient this entire time. Why stop now?) The mouth sores are dangerous for Trip because of his Diabetes Insipidus. If he quits drinking because the pain becomes unbearable and thus stops regulating his own fluid when his medication wears off, then we will be immediately admitted into the hospital. The other concern is that this is only his 3rd round of this drug and we want him to be able to stay on it for another 4-5 months. That won’t happen if the side effects get worse. I don’t want to think the worst yet, so I’ll go back to some good…

Writing down this journey has already helped me in so many ways. It’s a cathartic outlet for me and so many of you come to me after an update giving me encouragement, suggestions on how to make this time in our lives a little more manageable and reminders of what is good in this world. I can’t thank you all enough for that. The love we are given is bigger and stronger than any disease we could face. That is one lesson I vow never to forget.