This update is long overdue, so it is a little lengthy. Trip is doing great with chemo at home. We finished his 4th oral dose of methotrexate Saturday. His counts continue to improve, including his hemoglobin. Dr. Appel seems to be so happy with his progress. I couldn’t be more thankful for her.
Trip is doing great at school. Today is his first day to attempt a full day and it was a success. He has new friends that he loves and is looking forward to participating in some extracurricular activities.
Trip’s play therapist says he is ready for graduation! She said she has seen a huge change in him since starting school (and probably because he hasn’t been in the hospital lately) and wants him to “graduate” by the end of the month. She talked to him about how he doesn’t need to come see her every week and that he’s doing such a great job expressing his feelings. He became angry about not being able to continue, but his therapist explained to me that is a normal reaction.
We have a few challenging days ahead of us in the coming weeks. Trip has to have a neuro-psych test at the end of this month. They want to get a baseline since the MRI has shown an area in the brain that has been affected (thankfully not in the gray matter). They told us to be prepared for a full day of testing, which might be difficult on Trip. He also has an MRI the 2nd week of October, which shouldn’t be a big deal after as many as he has had, but they always contribute to some family anxiety. Dr. Appel does not want to do another PET scan due to the amount of radiation exposure he has had unless it is absolutely necessary. Trip will also have some dental work done at the end of the month. We have put off going to the dentist to focus on other obvious priorities, so now we have more problems than we want. The procedure will be done at Children’s due to his medical status and the ease of getting the work done while he is under anesthesia. I’m not happy about it and a little mad at myself for not getting him to the dentist sooner, but it is what it is and we’ll handle it. I’m trying to learn from the past and not beat myself up over what I should have done differently.
Last week, I spoke with a representative for a drug company that is developing a treatment for LCH. It was a tough and emotional hour+ of rehashing the past 20 months. At the end of the conversation, the interviewer asked me how I feel now about where we are. I told her that I will never be comfortable with my son having LCH. I will never go a day without thinking about this disease and the chaos it dumps on families, but now (especially after revisiting what we have been through since diagnosis) I feel content. It was nice to be able to say that. It is nice to feel it. The black “what-if” cloud will always linger in the back of my mind, but the difference in today versus a year ago is so great in my head, heart and hopefully actions.
Recently Colson and I have hit some rather large bumps in the road with his business. Truly gaining perspective in life can make tough situations easier to stomach. After what we have endured with Trip, it has been easy to compartmentalize the difference in work stress and life-or-death stress. A business deal gone bad won’t overshadow one minute I have with my precious son and family. Work problems still suck and aren’t always fair, but I now know the appropriate bucket to place this stress. Trip’s smiling face reminds me what is important and where my energy should be spent.
September is Histiocytosis and Childhood Cancer Awareness month. Please remember those who have been affected by disease. Please say thank you to those who have dedicated their lives to finding cures and assisting people in need. Thank you to each of you for standing by us, praying for us, encouraging us, and donating to finding a cure. Logon to www.histio.org for more information on how you can help raise awareness.
Much love and peace to all,
Mandi
