The Catch Up.
Dearest gentle reader,
Kidding. Anyone catch Bridgeton Season 3?!
That's a whole other conversation. We're here to talk about a different kind of love story; a love story for our sweet, brave, sassy Owen.
Last time I was able to sit and write an update, we were just moving into phase 2 of treatment. Now, here we are, nearly 2 month later, hoping to move into phase 3 next week. This Summer, Mike has been spending most of his time in Colorado with Owen while I work and save my PTO as much as possible so we can continue to support Owen while also..ya know, feeding our other kids. Our older boys have been with me and hanging out with Mallory again. I appreciated Mallory so much when my kids were babies, and now that they're older, I appreciate and love her even more. She's a pretty wonderful person and though Ben and Luke are louder and rowdier than they were as infants and toddlers, I know they're still loved just as much. Its a difficult balance, but we're doing ok. Its nice to have a bit of distraction and normalcy with work, but there's also the guilt associated with working when my baby is miles away going through something I can't begin to completely understand. Appointments are long and frequent and Mike has had to comfort Owen through most of them this summer, which is a job in itself both physically and emotionally. Your continued prayers and well wishes don't go unnoticed as we navigate through all of this.
In a big picture sense, Owen is handling his treatment well. He doesn't get too sick on the medications and he is so much more himself now than he was even the month before he was diagnosed. We don't have to hold his hand to help him to the bathroom and he is able to run and play with his brothers with an occasional break. He's still sassy as ever, but puts up with his nurses without too many swats and even smiles at appointments once in a while!
On the not so fun side of things, Owen had a pretty severe allergic reaction to a type of chemo called Cal-Peg at the beginning of June. This med is pretty common for allergic reactions, but they generally try to push through and finish the med if the reaction is just hives. Owen unfortunately had hives, swollen eyes and throat, and an increased and sporadic heart rate among other things that landed him in the hospital for the night to make sure he was ok. Due to the severity of the reaction, it was decided he would need to get the medication a different way. Unfortunately, that different way is a series of 6 big shots to the leg over the course of 2 weeks. Not only did he have to do this then, but he's had to have this series 3 times so far. That means at least 3 appointments a week for two weeks that last at least 4 hours a piece. On top of these visits, there is another chemo med that is given through his port that he takes 4 days a week also 3 times throughout this phase. Generally, the nurses teach the parent how to do it and it can be given at home. Our insurance only covered it if it was done in the hospital, and of course it happens to fall in our off weeks of shots. The no real break for Owen (and for Mike) has definitely worn on him, but we're doing ok overall. Owen's least favorite part of the appointments are his port being accessed on Monday and de-accessed on Friday. Its not so much the needle as the big sticker that's put over the needle to keep it in place and clean. Taking that sticker off is a major source of stress for him and the nurses are constantly trying to do things to help him through it. They are wonderful. Seriously. Every single nurse in the outpatient center have been literal angels. Haley, Sonja, Amanda, and Gayle all deserve a special space in heaven..Or at least like a really big, delicious coffee. They're the absolute best!
Next week we are hoping to move into phase 3 which looks a bit different than the last two. If Owen passes, phase 3 will have a week on, week off set-up that will hopefully allow us to be home in Gillette more. He'll have a week at a time where he is admitted to the hospital to get a high dose of a med on Monday, then be monitored and flushed with fluids for the rest of the week, followed by a week off, repeated 4 times I believe. We're ready for some time at home for sure, but it does sound like a pretty hairy med, so please keep Owen in your prayers that everything goes smooth. Remember how in phase 2 we talked about the bone marrow biopsy being good, but not as good as we would have liked? Since his marrow wasn't quite what the doctors were hoping for, he will have another marrow biopsy done at the beginning of phase 3 to check if he has leukemia in his marrow. We are of course hoping for a clean result, but not without a bunch of fear and anxiety surrounding that biopsy. The genetic make-up of Owen's leukemia cells makes it a bit more stubborn and more likely to come back compared to other B-ALL leukemias. Please pray that the result is clear and if not, that the doctors will have the guidance to help our son be happy and healthy well into old age. In the mean time, enjoy this little video of Owen painting :)