Updates (Sept 11-17)
Sunday (9/11)- Ian had a really good day. He had very little pain, he had energy. and he had no vomiting. He was able to consume, and keep down, a healthy amount of food and fluids. His spirits were good and he was able to enjoy some fresh air, hanging out on the front lawn with his siblings. We enjoyed some angel food cake w/strawberries and whipped cream (a favorite of Ian’s!) after supper and then his little sisters showered him with hand made birthday cards (his birthday is tomorrow! the big 18!)
Monday (9/12, Ian’s 18th Birthday!)- Ian started off on the wrong foot today… vomiting from the get-go. The nausea was pretty bad and we had to cancel his Speech, Occupational, and Physical Therapy appointments for this morning. I called the Proton Therapy Center to ask about what we do if Ian’s nausea is this bad? Do we still come in? Do we skip a day? I knew he wouldn’t be able to lay still enough for long enough to get through a treatment, without heaving from time to time, in the shape he was in. I was instructed to bring him in an hour early so they could try some sub-lingual Zofran (a small tab that dissolves on the tongue, not requiring swallowing, less likely to be lost to vomiting) and perhaps even try some IV fluids.
The sub-lingual Zofran helped quite a bit, for a couple hours, but unfortunately wore off by the time his treatment was done, so they gave him another dose, and sent us home with a prescription for more.
They had a Birthday cake waiting for him at the Proton Therapy Center, hopefully he’ll be feeling well enough to enjoy it tomorrow…
His pain level never went higher than a 5 (on a scale of 1-10) today, though he has been having a lot of dizziness and some extreme light sensitivity.
Tuesday (9/13)- After only vomiting once in the early morning, Ian was able to get up and ready on time to get out the door & up to Indianapolis (about an hour and a half drive north) to Riley for his first dose of Vincristine. That went well (so far!) and then we all piled back in the van to head back down to Bloomington just in time for his Proton Therapy treatment for today (which is where I’m posting this from…)
later… Ian began exhibiting some odd confusion symptoms (not remembering the day, wondering why he had to go back to the Proton Therapy Treatment Center again on Monday, when it was Tuesday afternoon, he said he didn’t remember sleeping… and then wondering where his non-existent large cup of cold juice was…) and 2 different docs called me on my cell phone to check on him… He’d also though he saw bright lights during a treatment, and had more significant tremors in his left foot during another treatment… All of these things, added to the chronic headaches and vomiting, had them concerned about the possibility of Ian having some brain swelling… His main doc down here called in a prescription for a powerful steroid and I ran to pick it up and get Ian started on it right away tonight.
Within an hour, he said he felt better, less pressure/pain/headache/nausea… this seemed good. He slept long and hard (which is the exact opposite of what the doc had told us to expect with starting a big steroid burst).
Wednesday (9/14)- Ian was slow to get up, but we managed. He was really dragging this morning, and even asked me if there is anything he can take for this extreme fatigue. I told him he could try a nice big mocha frappe (He is NOT a coffee drinker, and is determined never to become one, we’ll see…) On the way to his speech therapy appointment, he started asking me strange questions about his sleeping arrangements, and when I asked him several clarifying questions, I realized that he was thinking he slept in his room back home for the past 2 nights. When I asked him if he thought we went back home, he realized that couldn’t be… “No (pause), because I woke up here” So the confusion continues, and in fact got more profound as today wore on. Also, his nausea that had mellowed out for a day, resumed. His overall headache pain was better today, though he did have two episodes of sudden severe pain, that passed after a bit…
His main doc at the Proton Therapy Center ordered an MRI (at Riley, in Indianapolis, so 2 days 2 trips…), which we made it to this evening. His confusion continues, sometimes the things he says are completely nonsensical. He seems to be trying to tell me something and just not finding the right words, but he thinks he is, clearly, from the way he so matter-of-factly tries to tell me something, or ask me something.
I’m not sure how soon we’ll know what the MRI showed, if anything… The technician said that the docs can see the images right away, but that it could take 24-48 hrs to get the radiologist’s report.
After leaving the house by 8:30 am and not arriving back home until about 9:30 pm, he’s exhausted and in pain (headache grew on the way home, just when his next steroid dose was due…), I’m exhausted, we’re ALL exhausted.
Hoping we can get up and at ‘em for his ST, OT, and PT tomorrow morning!
Thursday (9/15)- Ian seemed to sleep well again last night, was easier to wake this morning, and seemed to have a bit more energy today. We made it to OT, PT, and ST on time and he did ok, showing a bit of confusion/difficulty following instructions, but not nearly the kind of confusion I was seeing Tuesday and Wednesday. He was also less fatigued, but at the same time he tired quickly during his therapies, even things like speech exercises and blowing out his air slowly and sustained (like when blowing bubbles, that was extremely tiring for him today!)
Like so many other things lately, I never thought I’d see the day when my strapping teenage son would become exhausted trying to blow bubbles. I say trying, because he couldn’t do it. My just-turned-18-year-old-son can’t blow bubbles. Blowing bubbles takes control of the airflow, something we never even think about really, at least I never did. I see it now, and now that I think about it, I’ve seen it with excited toddlers and preschoolers. When Ian tries to blow bubbles, he takes a big breath of air and it comes out in a big burst that just “pops” the bubble solution on the wand, without making any bubbles. He wasn’t able to control his airflow, blowing more slowly and sustained, and trying a few times was all he could take. He was done, and we decided that the bubble-blowing practice for “homework” could wait until next week…
After his afternoon Proton Therapy Treatment, Ian wasn’t nearly as fatigued and light-headed feeling as yesterday. It really seems like the steroid is helping, which pretty much confirms that his progressing issues really were do to a brain swelling problem. I’m so incredibly thankful that we caught it when we did, that he started the steroid burst when he did. There’s a story in it all, more than I have time to write out now, but I’ve been scribbling notes in my notebook, and I hope to one day tell of the many ways we’ve seen the Lord’s had at work in the details in ways that simply amaze us. God is good, all the time, please, don’t ever doubt that.
Ian’s appetite has returned to a much more typical-for-a-teenage-boy status, which is a huge improvement, and will require another run to the grocery store soon! He’s down to 128 lbs (from 140 lbs, which was already skinny for his height!), so when he’s feeling good we need to try to pump him full of nutritious calories!
Friday (9/16)- Ian woke with more energy than I’ve seen in a long time (apparently the steroid is really kicking in at this point!), and is feeling pretty good today. Did I mention that the only headache pain he had yesterday was in the 1/2 hr before his steroid was due? Same thing this morning. The headache was just starting to creep back in when it was time for his next pill. It doesn’t take long for it to kick in, so he hasn’t even needed any pain meds for over 24 hrs! Praying he doesn’t need any today!
He has the day off of OT, PT, & ST (we’ll be having those appts twice a week from this point on, Lord willing) and only has Proton Therapy on the schedule today. We’re going to try to get out for some fresh air and leg-stretching later this morning.
Ian was still feeling pretty good after his afternoon radiation treatment, so ended up heading down the road to the Bloomington Speedway for a night at the races. Back home, in Minnesota, our boys have enjoyed many a Friday night at the races with Grandpa, so when I found out about the season finale event going on, and that it was so close to where we are staying, I called to find out about handicap accessability and the kind woman I spoke to on the phone said that Ian could get in free! Kids 12 & under were all free, so we only had to pay for me! We had a blast, Ian got out of his wheelchair for a while, and Baby Faith fell asleep in the Moby Wrap, seemingly oblivious to the noise. We didn’t last until the end of the event, but headed back home as it started getting darker and colder. It was just such a blessing to get out for a fun night, especially with Ian feeling so good!
Saturday (9/20)- It became obvious that the steroid is doing its job, as Ian has continued to do and feel well. Because he is feeling so much better, he is able to work more on his physical therapy and speech therapy exercises, and we’re feeling like he’s back to making forward progress, which, after the way things were earlier this week is a HUGE relief and blessing!
We got out to a local park, not for any playground equipment (the kids just ran right past that, well most of them, Ian rolled on by ), but for the paved trail and the spot by the creek where the middle 6 children hunted for geodes and walked across the downed tree (like a balance beam), while Ian sat and relaxed in the sun, until he got hot and moved and relaxed in the shade for a bit.
I’ll keep adding to this post throughout the week, check back for the latest update…