Well, we are five days in, and Delayed Intensification is already giving us a bit of a run for our money. Ronan did pretty well with everything Monday. He was really nauseous by a couple of hours after the infusion. We went through all three of our nausea meds Monday night for the first time since induction (the first phase of treatment.) He was pretty low energy as well. This continued into the next couple of days but got better.  

Yesterday, we went back up to clinic for asparaginase. He got this medication once before during induction. He was due to get his second and final dose today. This medication is an enzyme, hence the name ending with ase (thank you Mrs. Farrar- high school chem teacher.) It breaks down an amino acid that cancer cells need to reproduce. This is a unique action and this drug is an important part of the treatment protocol. This medication is also a little unique in that it can trigger an allergic response for about 15% of patients, usually the second or third time it is given.  

Luckily, the clinic staff was on high alert and totally prepared for this because lo and behold, Ronan is in the 15%. Even after pre-medication with both a hefty dose of IV benadryl and an IV steroid, he had an immediate reaction to the infusion and woke up from a dead sleep coughing and retching with alarming changes in his vital signs. The infusion was started at 11:20 and by 11:23 was off and he was getting epinephrine. The whole thing was resolved very quickly thanks to the quick and coordinated efforts of the staff. After all the excitement, we hung out for a few hours of observation before getting to come home.  

Fortunately, there is an alternative version of this medication for people who have the allergic reaction, Rylaze. Unfortunately, it can only be given through intramuscular injection. It is a series of six shots that he will get Monday, Wednesday, and Friday of the next two weeks. While this may not seem like that big a deal because all kids have to get shots sometimes, this is adding a lot of fear, anxiety, and suffering to Ronan’s plate. Our tough guy has had well over 200 pokes in the last 7 months. Other mamas who have been through this tell me that this medication is a thick substance in a fairly big needle and it hurts. We will get him through it, and we will try to do what we can to decrease discomfort. I am dreading telling him that in addition to going up to clinic 3 days each of the next two weeks, which is a lot in and of itself, he will need a shot at each of those visits. He is a champ but this stinks and despite his toughness, this will likely be a particular challenge for him. As a parent watching your kid go through SO much all the time, it feels horrible to ask one more, hard thing. You just wish more than anything that you could protect them from literally just any part of this.  

As you can imagine, this was not the birthday we hoped to have for Bryce! Ronan got diagnosed the day before Father’s Day, had his port placed and had a second bone marrow biopsy on Father’s Day, and now had anaphylaxis on his birthday. We think maybe he gets to stay 38? Haha, it’d be nice if it worked like that even though we feel like we’ve aged a decade in the last 7 months. Let’s hope next year’s birthday is a whole lot better than this one. Although we did celebrate a little on the mountain last week, and he did get to have some tasty birthday cake last night, it sets a low bar for next year, but hey, I’m thankful to all have been home and together last night. It could have been so much worse. Maybe that’s a terrible perspective to have, but if childhood cancer has taught me anything, it’s that it could be worse. It could have been a worse kind of leukemia, a worse kind of cancer, a worse side effect from treatment, a worse outcome from treatment, etc. I think it’s okay to say that the day kind of sucked as far as birthdays go, but I’m grateful it wasn’t worse, too. 

If you could all cross your fingers for no snow in the valley these couple of weeks, that would be appreciated. Snow here is always a big deal here because of how infrequent it is and the PNW’s seeming inability to prepare for it. It often means bad driving conditions due to a lack of management ie snow plows, ill equipped drivers who are not used to driving in snow, and highways being blocked up by semi-trucks, extensive traffic and long wait times. If we get any freezing temps after a snow that isn’t plowed, we often get thick ice that truly is awful to drive on regardless of your snow experience. Navigating that challenge while having 6 trips to Portland planned over the next two weeks (minimum and assuming no unplanned trips...) well it makes me tired. RMH is booked and we are waitlisted. There are hotels that are nearby-ish (many of which are discounted for patients) and an extremely generous offer by another family navigating this nightmare for safe places to stay, but the uncertainty of it all is stressful. So, no-snow vibes would be just great! 

I find myself so thankful for new connections with families also navigating this crazy, and for old connections supporting us through this. Life rafts in a raging sea, lights in a dark tunnel, pick your metaphor, you all are sustaining us. Trying daily to be as tough as our warriors, while holding on to some sense of sanity.