Immunotherapy, Ch 14.18 Round 1, Inpatient

January 22nd. We got to the hospital on time and arrived at the same time as our buddy Ben who is just ahead of Simon in treatment. They got to be next door neighbors for the 5 days! Did they care? Not one bit. But I was able to get to know his mom a bit better.


They started the medicine around 2pm. So the morphine drip was set up 2 hours before, then Tylenol and Benadryl the hour before. The Benadryl is to help if there is a reaction, the tylenol to stop fevers as they are common in this, and the morphine as it is painful. It takes about 4 hours for the medicine to really take hold and cause the pain. and on the 4th hour- Simon was crying in pain. They called his NP in and apparently she did the math wrong for his pump so he wasn’t getting as much morphine as he should have.


about an hour later we got it under control and he slept until about 9pm. then he was up until about 2am. Then at 5am when he decided he wanted to play video games. So I turned on the video game and climbed back into bed. luckily Benadryl came in and he was back to sleep at 6 but then up at 8. This medicine tends to hold all the water weight in. So when it’s turned off they give him medicine to get the water off. Meaning- all night long he was up to go to the bathroom. Sigh. January 23rd- I’m tired but handling it ok. Simon is doing great. No signs of pain, low fevers. We watched all the Chipmunk movies. That night was as bad as the first- his schedule is all off and he wanted video games at 5am again. January 24th- he just wants to watch shows, do nothing else. Music Therapy came and he just stared at them until the end when he found a cool squeaky instrument and had fun with that. January 25th was the last day of the ch 14.18 and he did great. We just had to wean him off the morphine from about 10pm that night until the next day. January 26th we came home! He had some constipation that morning. And by that evening he had loose bowels. Very loose to the point where he couldn’t control it. That night his breathing was very fast but not too labored so we didn’t worry as much. January 27th- realize we are out of pain meds so I called my mother in law to come watch the kids and I ran up to Primarys to get more. It’s about a 40 minute drive and they wouldn’t do a closer pharmacy. By the time I got home Simon was about out of clean underwear (despite cleaning it all the night before). Mother in law went home, my parents and family that we live with were at our family ranch two hours away. around 4pm Simon is throwing up constantly and Meg is trying to hug him to comfort him (isn’t she the sweetest thing ever??).


Caleb called on his lunch break and I just asked right away- can you come home? He came home right away.


The NP at Primarys told us to get a stool sample to the closest hospital to test for CDIFF, Norovirus, etc. It was after hours so we did this through the ER at Alta View Hospital. Odd for me to know more than the front desk about CBC’s, tests, etc. But the test came back negative for everything they tested.


He was still pretty sick the next day but slowly got better.


January 28th, Sunday, I sent Caleb to church with Meg and enjoyed some cuddles with Simon. We had a very relaxed day. January 29th we had a clinic appointment for Simon and then a clinic appointment for Meg in Genetics. SO GLAD that my mom came cause both kids were emotional and tired. Meg bit Simon on the head, they both were crying so much. Simon in the stroller and Meg running around. So it was a long day of emotional ups and downs.


The clinic prescribed Simon a mood stabilizer to help with his emotional changes. It was a very small dose that we started that night.


Simon is sleeping in our room right now on an air mattress on floor. He loves it cause he’s near us and says it’s comfier than his bed (which happens to have the newest, nicest mattress in our home. Huh).



Around 11pm, just as we are drifting off in our bed, we head a liquid sound from Simon. We jump up and listen more- gurgling from his mouth. He was throwing up in his sleep and wasn’t waking up. he was choking. I sat him up and tried to wake him up- he was stirring a bit but not waking up. I carried him into the bathroom to get him in the tub to clean him and hope he wakes up. His eyes stayed closed the whole bath and he never fully woke up.


He slept okay the rest of the night but Caleb and I did not. I spoke with the bone marrow team the next day, January 30th. They said to not give him the med again, they have never heard of a kiddo NOT waking up while on it. The sounds from him were so quiet. If he wasn’t in our room he might have continued to choke and then…. I hate it. What if? WHAT IF?!


We started another new med last night. His Accutane. Which is pills and we were worried cause he’s never taken a pill before, we usually crush them. But this one is a liquid capsule. And what does Simon do? Swallows them with no problem. 🙂 I was so proud of him. Funny boy keeps us on our feet!  Our Next inpatient is February 19. We will do an at home infusion of another med the week before. This part of treatment is a bit better cause there are no chemo effects. But it’s harder because there are so many medicines, pills, and appointments. It’s very busy and just happens to be when Caleb went back to school and my busy season at work. To say we are busy is an understatement. We are exhausted and we’re only one month into the year.


Then the prescription I went to get last night was $798!! I missed part of President Trump’s speech but apparently he mentioned trying to get affordable prescriptions for people. I sure hope so cause that was a big hit.


This is a challenging time for us. We are 10 days away from the anniversary of Simon’s diagnosis. We’re emotional, we’re tired, we’re busy, but we are also grateful.

We have witnessed many miracles.

We have received many blessings.

Our Heavenly Father is very aware of us in all situations.

He knows better than anyone what we are going through.

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