Today we returned from visiting my family in Arkansas. It has almost been two years since our last trip there. It has been two years since our last family trip anywhere. It was so nice to be there and so nice to hug people who have supported us since Trip was diagnosed. These are people who are the salt of the earth and who I know would do anything for us at any hour of any day to help if we needed them. They have helped with prayers, listening ears, hardworking hands, and unending supporting. These things can never be repaid. “Thank you” doesn’t seem to be enough, but these people don’t want a thank you… they want to know how they can help now. They do it because they love us and genuinely want the best for Trip. Not visiting in almost two years meant trying to cram a lot of things into one weekend. It was impossible to see everyone we wanted to see and do everything we wanted to do, but hopefully now since I’m more comfortable traveling with Trip we will go back in the very near future.
Trip has had his oral surgery, neuro-psych test, more chemo and an MRI in the last month. The oral surgery was fairly simple other than a small vomiting spell due to the anesthesia. Trip has some silver teeth in the back and cried about them for the first few days, but now he seems to accept them.
The neuro-psych testing was interesting. The doctor explained with LCH, the MRI might show areas in the brain that could lead to changes in abilities/behavior OR there can be nothing on the MRI but there could still be changes in abilities/behavior. (Huh?) Basically there is no great science to this. Trip tested superior in all areas except his fine motor skills, which has been apparent to us. She doesn’t think it is bad enough to refer him to an occupational therapist unless he doesn’t progress like he should in the next few months with schoolwork. At this point there is nothing indicating this is disease related but rather simply his developmental path. She also explained that one of the side effects of methotrexate is causing the brain to work less efficiently over time. We won’t know when/if this will happen until it does. I’m sure I was told this side effect at one point, but hearing it again was a little shocking. I’m thankful for the chemo that has made him well but the thought of him having further issues from it is a little stomach turning. He will have another neuro-psych evaluation when he is in 2nd grade.
Trip’s MRI was on Thursday morning before we left for Arkansas. Our wonderful nurse practitioner, Sara, called me with preliminary MRI results when we were in the car. She knew I would be anxious and would sleep better with some good news (love her). Yes, good news!! The MRI showed improvement around his orbital area. Most everything was stable to improved. There are some areas of his skull that are still affected but they aren’t progressing and there is nothing in the soft tissue of the brain. Even though we haven’t seen the doctor yet for the official results, my heart is overjoyed with the confirmation of what we see everyday.
So many people have commented on how healthy Trip looks now and it makes me smile every time I hear it. He truly is my hero for enduring what he has and still finding joy in the little things. He is my constant reminder to be still, breathe, enjoy, appreciate and love.
