We love Boston. After our family spent a couple months there in 2016 when Cam had his radiation treatments, it’s always felt a little bit like a home away from home.
Once again, we stayed at Christopher’s Haven, across the street from Massachusetts General Hospital and Beacon Hill. We got to hang with the brave children and their families, so similar to ours it’s hard not to bond with them immediately. You should have seen Cam smile while he played with those kids! I was ESPECIALLY cheesed I got to spend time with one of my ABSOLUTE favorite people, Catie (CH manager extraordinaire), whose enormous heart is only matched by her boundless energy, endless optimism and the most amazing tattoos you have ever seen. Kris and I can’t say enough about Christopher’s Haven. Seriously, give them all your money.
I know you want to know how Cam’s medical appointments went, but first I want to give some shout outs from our trip:
- TSA. I’m not sure who decided a disabled first grader who traveled with a ventilating machine, an oxygen concentrator, a nebulizer shaped like a puppy, a fluid pump, a suction machine and two sweaty parents was the mastermind behind a plane explosion, but you all can sleep well at night knowing ain’t nuthin’ get past airport security! At one point we had six TSA agents rifling through Cam’s machines, testing his formula, frisking Kris…at least they were all very kind about it. A word of advice, if you travel with a complicated homeland security risk like Cameron, don’t just call TSA Cares once, keep calling until one of them shows up to actually help you through security.
- Mike’s Pastry. Yep. I could eat those freakin’ cannolis all day. My favorite was the chocolate chip.
- Walking. I brought two pair of shoes. One was giving me blisters and the other was not waterproof, so my socks were all wet. Still, Kris, Cam and I were ALL OVER THAT CITY. I don’t regret it. It helped burn off the cannolis.
- Fenway Park. We had some time to kill between appointments at Boston Children’s Hospital. Totally by chance, we wandered up to Fenway on opening day of the Boston Red Sox! Wicked awesome people watching, let me tell you.
- Public Transportation. Boston subway (The T) and the commuter train is a little scary, smells like bleach and urine, and is infinitely awkward for those that are disabled, but dang, we got everywhere we needed to go. On our second or third trip, Cam found the emergency alert button near the wheelchair spot, pushed it once, got a great response, and from then on, my job was keeping the little stinker’s finger off it. Kris’ job was making sure Cam’s front wheels didn’t get stuck between the platform and the subway car when it moved off.
- Sam Adams Seasonal. Clam Chowder. Pizza by the slice. JP Licks ice cream. Everything bagels and whipped cream cheese. Yeah…maybe we should have walked more.
- Bostonians. They may have a reputation of being mean, but Kris and I found them to be quite awesome as a whole. Loud and boisterous, sure, but also direct and kind. We can dig that.
So now for the medical update (I mean, this wasn’t a vacation, right?).
Cam had eleven appointments (though some of them schmooed into the next one), plus x-rays and blood tests, over the course of five days. He was supposed to have a triple scope (take a camera into his GI tract and airway), but they canceled it the day before, thinking intubating his super swollen larynx would be a ticket to the Boston PICU for a week. No matter, we got plenty of information to bring home to Colorado:
- The biggest takeaway? Wait for it…Cam has to stop having pneumonia. I mean duh, but it was nice to have someone say that like it was even possible!
- Without boring you with the details, we got about a million little things to tweak to help him sleep at night, stay awake during the day, let his airway heal, keep the pneumonia away, strengthen his muscles, etc. And excellent recommendations of some medications to try if we’re still having trouble after that.
- The big brains of Boston are reviewing his previous labs, images, and bone marrow biopsy slides just to be super extra sure we aren’t missing anything.
- The ENT doctor didn’t think he needed a tracheostomy right now.
- The neurologists, oncologists and radiologists thought Cam’s weird MRI was from Wallerian degeneration, which is chronic degeneration of his neurons in his brain after all the insults (tumor, radiation, stroke, surgery, epilepsy) of the last few years. That sucks, but they do NOT think it’s another tumor or brainstem necrosis (yeah, that actually means death of your brainstem, so let’s say not having that is good news).
- The prevailing theory is that Cam’s neurologic insults, plus months of chronic life-threatening pneumonia have caused a general neuropathy (loss of strength and control of his nerves and muscles) as well as that chronic/intermittent pancytopenia (low red blood cells, white blood cells and platelets). All I heard was, “he can recover from this” with time, therapy and relative health.
We have been home about a week, and it took about that long to get past the jet lag and get unpacked, but Cam is doing pretty good. He seems sleepy, and last weekend he thought it would be fun to poop blood for a couple days (we determined he was swallowing blood after a cut lip and lost tooth, which was super weird but not outside of the realm of messed-up crap he does on the regular, and in any case has stopped now), so now we’re back to what’s left of our routine and getting Cam plugged back in with his local doctors.
The plan for Cameron now? Avoid pneumonia, sleep at night, get stronger during the day, get back on track. Simple, right?