Trip has been feeling “great” after getting out of the hospital last week. We got home by 9:00 last Thursday night. We were able to have a wonderful Mother’s Day weekend at home and with friends. His counts were pretty good this week, too. He feels so “normal” that I can help but smile about that and feel good about how strong he is.
Our last day in the hospital, we met another little boy with LCH who is also on methotrexate. He has skin only involvement, which is the best-case scenario for LCH, but has been on chemo for about 5 years. Every time he stops chemo the disease comes back. I know this is the sick reality of this disease, but it still makes me angry. It’s always nice to connect with another family going through the same thing.
Monday, we said goodbye to sweet little Jenson. It was such a beautiful service to remember him. The stories of his cute personality produced laughter through tears. I could not control my emotions through the service and have yet to have a day when the sadness does not surprise me and take over. I recognize part of it as fear, but most of it is feeling pain for friends that had to bury their precious child. I still cannot reconcile the death of a child. It seems so unnecessary. Even though Jenson’s parents are grieving, they unselfishly asked me and Colson to rise during the service while a picture of Trip was on the screen. They were raising awareness of histiocytosis and attaching another family to the pain of this disease. They provided information on how to support histio research. What a positive example of focusing on others through immense grief. I wish I could ease their pain.
I’m trying to focus on the positive. We had a wonderful family dinner last night. Trip was happy and eating great. I found myself praying for more moments like that. It was such a feeling of love for my family. Today, I have been blessed by unexpected, encouraging words from a friend when I most needed them. Colson will celebrate his 40th birthday this weekend. Gaky and Pops are coming to visit this weekend. We got a surprise call today to let us know we will hear from Make a Wish Foundation soon. I explained it to Trip and he said he wants to go to Hawaii! He quickly changed it to Disney World because that’s where is friend Carter wants to go for his wish. There are so many things to be thankful for that can easily be clouded by fear and sadness. Counting my blessings, living in the moment and feeling the love surrounding us give me strength.
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