A hard day and uncertain next steps

Yesterday was one of our hardest days yet.

We went in for Wes’ sedated spinal injection of methotrexate (chemo) after getting derailed last week. He was NPO, which is usually very stressful and he gets understandably upset. We gave him a small dose of adavan before we left, as we do before every sedation, and the ride went smoothly. He was calm and playful, even after a retake on port access. Things were looking up for the day. They administered the sedatives, he dozed off peacefully, and the procedure went quickly and smoothly. After about an hour he woke up gently, smiling, and ravenous. I fed him two bags of snappea crisps, two bags of fruit snacks, a bag of yogis, tons of water, and he ate in a blissful half-sleep.

We went over to the day clinic for the beginning of his more intense IV chemo, a drug called Pegaspargase to be pushed through an IV for two hours. He had Peg during his first two months of treatment, but not often, and only a small dose over a over minute push. The intensity of his new dose requires two hours of fluids to flush his system to protect against wreaking havoc on his healthy organs. (The next phase of treatment would involve a 24hour push of Peg with two days+ of fluids which is why he’ll be hospitalized for four day periods several times right when Baby H2 is due.)

His IVs were all in place and they began the drip. Almost immediately he became very irritable, started coughing, itching, and messing with his ears like they were tickling. I held him close to my chest and got him calmed down to the point of almost sleeping, then all of a sudden he projectile vomited the impressive amount he had eaten after the sedation. Before I knew it he was being whisked off to a triage room I hadn’t noticed before, being hooked up to BP, pulse/ox, and given an injection of methylprednisolone (a steroid used to treat severe allergic reactions). I just stood frozen in the day clinic, holding back my tears and trying my hardest not to throw up myself. (A lot of it went down my shirt and bra.)

When I made it into his room he was cold, upset, and very scared. The doctor and nurses were buzzing all around him, monitoring him for anaphylaxis, and I got him dressed in a new clean hospital gown. We found a stuffed dog that we happened to have at home already and he snuggled it so hard until he finally just passed out on top it.

As things calmed down I called Roger and gave him an update on what was happening. He was on speaker when the doctor was in so she was able to articulate the details directly to him.

After our call I just kind of sat there and stared at my poor precious baby, hooked up, poked, prodded, sick, tired, and still so utterly perfect. The emotions I’ve been holding deep over the last two months really started to weigh on me, and I had a good cry. Watching my baby have a reaction like that to a drug that is supposed to save his life was terrifying. The uncertainty going forward is scary as hell. There is a substitute for the Pegaspargase, but it’s in a worldwide shortage and no one is sure if we’ll be able to get it or not. If Wes does get access to it, we’ll be spending every M W & F at the clinic getting injections for the next six weeks. They mentioned possibly continuing the Peg, but starting with a dose of Benadryl and methylprednisolone as a pre-drug to preemptively minimize the allergic reaction since he never went fully into anaphylaxis.

Either way, the next few months will be brutal for Wes, and now more than ever I would give anything to trade places with him.

Today Wes is doing well. He’s still on Benadryl as we keep an eye on any other reactions to the Peg. He’s in a great mood, giggling senselessly at Daniel Tiger, and snuggling with me as I type this. I’m so grateful for such a perfect kiddo and the best husband and partner I could ever hope for. (Roger picked up the house and made a roast last night as I just laid on the couch, broken from the day.)

We go in Monday for blood and platelet transfusions, and will hopefully know more about Wesley’s treatment plan then. Hold Wes in your hearts and let’s hope for a Christmas miracle.
🧡