Ian Update + More
Well, it’s been a hot minute since I’ve opened this page to write. Writing for me is a release, and for a few weeks, it just felt like a task. I never want to feel like I “have” to write a post for my blog. It’s something I do for me. My hobby. My passion. Not another chore added to my list.
With that being said, there’s a lot to update on with Ian. He had his usual follow-up MRI at the end of July. It was noted that one of his tumors, the one on his brainstem, took by more dye contrast than it usually does. This isn’t necessarily an alarm for concern, especially given the fact that the size of the tumor itself was unchanged. It was noted, we’ll keep an eye on it, but for now, Ian is declared to be stable. In the cancer world, in our journey, that’s all we need. We just need Ian to be stable. For his tumors to be stable.
We also had a follow-up with neurology at the beginning of the month. We’ve been checking in with them every 3 months since coming home from Ian’s lengthy hospital stay. This past appointment, we were able to change it to 6 months. Our primary concern for this current visit was to make sure Ian’s medications were all at a good dose. It’s a balancing act. We have to make sure he is medicated enough to control the tumors, but not overly medicated, as that can have it’s own setbacks and side effects. Our doctor was pleased with where Ian is. Both his medications and just how he has progressed in general. He did say something that I haven’t really thought about, maybe because I haven’t wanted to believe it, but he said where Ian is now may be his new baseline. But he also said it’s hard to say because the brain is complex, and Ian is still a kid. We’ll just have to wait and see. The best thing we can do is to just continue getting Ian the services he needs, and to keep working on our goals for him.
We finally got him to the dentist next week. Unfortunately, he was scheduled to go for his first visit the week after his tumor hemorrhaged so as you can imagine, we didn’t go. I asked Ian’s oncologist for a referral to the dental department. Between the Autism diagnosis and the brain injury, we need to go somewhere that will be patient with him. That is equipped to handle his needs. Because chemo can cause your teeth to decay, the scheduler was kind enough to squeeze us in when they were actually booking out to May. Ian did well during the appointment, and the staff was very kind and compassionate. Ian will need dental work to have caps put on all his molars. They’ll put him to sleep for this, get some x-rays, and do another cleaning during this time.
Ian was also able to get his port removed yesterday. He had his port placed in November 2020 when he started chemotherapy. Ian’s current treatment is considered chemo, but it doesn’t have the same side effects that regular chemo does. And it’s a pill, so there’s not a need for his port at this time. So, he had a minor surgery, it’s currently out, and he is recovering well at home now.
In one of my previous posts, I mentioned wearing many different hats trying to care for Ian in all the ways he needs cared for. After talking with other moms in a support group, talking with my therapist, and asking the Universe to guide me through this, I decided I’m taking off all the hats. Ian only needs me to wear one hat- the mom hat. I’m running myself empty trying to be everything, when the only thing I NEED to be is his mom. His safe place. He does need to work on his physical abilities, his cognitive abilities, his emotions, all of these things I mentioned before. But he also just needs to be a kid. This poor child has been fighting cancer since his 2nd birthday. He has known no other life. He needs to be able to just cuddle up with mom on the couch after working hard all day. He needs to be able to play with his favorite toys without always turning it into a learning experience of something he needs to work on. And you know what happened the day after I decided that? He went on the toilet 3 times the next day. We have struggled so hard to get Ian to learn how to reuse the toilet. Ask the Universe for a sign, and you shall receive. I have no doubt this is the right decision for our family.
Ian started first grade on Thursday, and we at this time, don’t have another appointment scheduled until the end of October, excluding his weekly outpatient therapy sessions. He’ll be going 5 days a week and without his wheelchair this year. We are praying for Ian to have a better year than last year, where he’s able to just be a kid. But we are also blessed and grateful to be where we are now because we know it could be worse.
It felt good to write again. I just wanted to send out a little update on how Ian has been doing. I’ll be posting on Monday’s again, and diving into more of the first day of school feelings on my next post. From our entire family, we once again thank everyone for their support and prayers. We are very blessed to have an army behind us.