We are back in the hospital for observation. Dr. Appel felt we should do the first round of “at home” chemo in the hospital so she could be sure the toxicity levels don’t get too high in Trip because of his DI. (Methotrexate is processed through the kidneys and on DDAVP Trip doesn’t urinate as much as someone who produces his/her own vasopressin, so he might process the methotrexate at a slower rate).
On one hand I appreciate the cautious approach, but on the other hand I hated disappointing my son. Have I not already learned the lesson not to make him any promises associated with treatment for his disease? We’ve talked for weeks about how he won’t have to go into the hospital for chemo for the foreseeable future, so this was a big blow to him.
Last night he got into bed and I was telling him how much easier this hospital stay would be and he didn’t say a word. Tears just fell from his eyes but there were no sounds of crying. This morning was a different story. Trip had a complete meltdown in the floor begging me not to make him go. It turned into me holding him and crying on top of his tears. I tried to wipe the sadness away with a paper towel. He took that paper towel from me and angrily ripped it into pieces. I realized how much better that made him feel, so I gave him more paper towels and then Kleenex and then I joined in. We pretended these meaningless pieces of soft paper were LCH and we ripped them to shreds and told them to leave us alone. We even yelled at the LCH/bits of paper, “Get out of our lives you stupid LCH! Leave us alone!” (Stupid has been labeled a bad word at our house since we are preparing to go to school with other kids). The tears stopped and the anger subsided and then we were better. It was therapeutic for me, and I’m certain it was for him. Following his lead was enlightening.
Trip had to be accessed when we got here but only to make getting blood easier. He has no chemo bag or fluids. He doesn’t even have a pole to drag around, so the freedom has been a blessing if we have to be here. His first round of methotrexate was around 1:00 p.m. He had to swallow eight pills and did it like a champ! I am so proud of him. He will have another eight pills at 7:00 p.m., another eight at 1:00 a.m. and the last eight at 7:00 a.m. They will test his methotrexate levels two hours after every dose. If they are comparable levels to a person who doesn’t have DI, then we should be in the clear and will hopefully be home by noon tomorrow. We will have to come back on Saturday for the final 48-hour level check, but that should not be a lengthy process. We will leave here with a longer prescription list than we have had in over a year, but anything will be better than the hospital stays.
Trip feels good and people who haven’t seen him in awhile comment on how great he looks. I’m so thankful for his healing thus far, and I’m excited for him to go back to school. I’m hopeful there will soon be a semblance of normalcy for Trip, even though I realize there is no such thing as normal.
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