Cade started his heavy dose chemo bright and early Saturday morning. He got all his anti-nausea premedication and was started on his 1st chemo drug by 7am. Carboplatin. It ran over 4 hours and then was immediately followed by the 2nd drug of the course called Thiotepa, which ran over another 4 hours. Sunday was day 2 and he received the same 2 drugs again over 8 hours, starting first thing in the morning. Thiotepa is terrible. Most drugs are excreted from our bodies with the help of our kidneys or livers. Thiotepa is excreted from the body through the skin. This can result in burns on the skin. In order to hopefully prevent this, there is a strict protocol in which Cade has to take a special mineral oil bath 3 times a day. Taking care to get any creases and folds of his skin/body really well. Each time he bathes, he has to change his clothes, and his bed linens also get changed twice a day. So bathing and changing clothes three times daily and changing blankets and everything twice daily. Day 1 wasn’t so bad. We found some toys to use in the bath by the evening bath to make it more fun. By the evening bath yesterday, the novelty definitely wore off and he was miserable and crying after 2 minutes of being in the bath.
As you can imagine, Thiotepa is causing a lot of laundry. Speaking of which I need to go change it over right now. I am very grateful that he is understanding and accepting this whole protocol because I have 2 monkey blankets here with me right now. If you know Cade well at all, you know how he is with his monkey blankie…the one that has to be “stinky!!” “I want the stinky one, not the clean one! Make it stinky!” I was dreading this agony of the stinky monkey blanket battle. I explained to him that because we have to do so much laundry and follow these rules, it is not safe for him to have a stinky one ever, they have to be washed every day and he has to just deal with it. And thankfully he has. Phew! We have not battled once. So far. Only briefly this morning when I realized that they were both dirty, and it was a huge meltdown as I was trying to get him in his first bath of the day. Our sweet nurse sensed the urgency and importance and ran and threw the load in so that it could be ready ASAP. This has led me now to doing laundry every morning and every night to avoid this problem again. Oh and did I mention we have to do this for a week!? 5 days past the last day he gets the drug, which totals 7 days. We have now made it through 3 days. Only 12 more baths to go. Lord help me. I can’t even think about the fact that this all repeats 2 more months to total 63 baths. I just can’t. One round at a time. And I have to be cautious with myself too. The sheet said I should wear gloves when I touch him. I looked at the nurse and said “seriously!?” I touch him constantly, he always wants to be held or snuggled. I’m supposed to wear gloves all day long?? She told me I didn’t have to, often parents don’t, but just use good hand hygiene and wash my hands a lot. I mean I’ve been peed on numerous times by radioactive pee, so how much worse can this really be, right?! So you guessed right…I’m not wearing gloves. But I’m not supposed to kiss him much either because it’s coming out of his skin, so I’m basically ingesting it. But again, seriously? That’s nearly impossible to do. Limit the kisses, maybe. But again, near impossible for that too! I want to eat him sometimes he’s so darn cute. So not kiss him? Right.
His 2 days of chemo went good. That’s the one upside to it all. We can already officially say that the first round of chemo is done because he only gets 2 days of chemo each round and those 2 days are now over with. He was in good spirits. Excited to see all his favorite nurses. He had Miss Brooke and Miss Emilie all weekend, which he loved. They wore his T-shirts so he of course had to put his on Saturday after his morning bath. Which he then peed on literally 30 seconds later, so we had to wash it so he could put it back on and take pictures with them. So cute. He sat in the playroom for a good hour or so Saturday night playing, and they were so cute they made him his very own scavenger hunt around the unit hiding, you guessed it, Paw Patrol characters all over for him to find. It was adorable. He felt warm on/off yesterday morning. By early afternoon he was feeling really warm to me. We took his temperature and sure enough, he was 101.1. This bought him a set of blood cultures and a CBC to check where his counts were at, but thankfully due to his active nature that day and continuing to be his same perky self, the doctors were not concerned enough to start him on any IV antibiotics. He is already on an oral antibiotic that was started when we arrived on Friday as a precaution to a spot on his head. We weren’t sure if it was an ingrown hair or infected hair follicle, so we asked about it. They didn’t feel it was either thing, but it was definitely something that caused what they felt could be a little bit of cellulitis at the area, which oddly enough is right on the small incision scar from his drain. Could have been a bug bite that got infected, or the number of times he walked his head right in to the corner of the counter top in that same spot while we were home. Who knows. Whatever it was, it bought him an antibiotic, but it is looking much better. He took a nice 4 hour nap yesterday afternoon which was good. I was hoping his body was using that time to heal itself and fight the fever.
This morning was not so much the case. He woke up today and definitely was not feeling his usual active happy self. I could tell this the second he was wanting me to carry him everywhere and was very clingy and fussy. And like I said, the bath novelty had worn off and is not fun. At all. I finally got him to take a bath at 9am and he was passed back out in his bed by 9:30. Then slept again for a few hours in the afternoon. And by 7pm tonight we took the final bath and he was asleep in bed by 7:45. His fever has stayed away. He’s been warm and his temperature has gone up and down, but nothing over 100.5 so we did not have to make any changes or repeat blood cultures. I’d say it’s safe to say the chemo is starting to take it’s toll on him already. And/or he has some sort of virus on top of it that’s causing the fever. He was not feeling so hot though today. Chris came to visit so he got to have some daddy snuggle time and I got to run out to the grocery store to stock up on some food and stuff so I don’t have to constantly be eating the cafeteria food here. I’m a little scared to see if tomorrow is going to be worse than today or better. I always try to see the light of the situation though, and it definitely could be worse. He could be vomiting all day long, and he has not thrown up at all actually since we got here. Knock on wood. He has stopped eating however. Last night he had all sorts of interest. We went down to the cafeteria and he got a few things. He ate about 5 french fries and that was it. Today he has not eaten anything with the exception of 3 or 4 raspberries. He was super excited about the things I brought back from the grocery store for him, which is always so adorable and melts my heart. But he didn’t want to eat any of it when it came down to it. He is back to just looking at it all and then changing his mind. I brought this up in rounds and asked if because of it, they wanted to increase his tube feedings to maximize his nutrition that way. So that’s what we are doing. They agreed with this because they are anticipating that likely by next week he will get mucositis and it could be bad enough throughout his GI tract that he won’t be able tolerate feedings and we will have to stop feeds all together and put him on IV nutrition for a while. He’s still been doing great with the Kate Farms formula, so hopefully he will continue to do so as he begins to get higher volumes of it.
Tomorrow is rest day 2. Wednesday afternoon he will get the stem cell transplant. Then we basically just wait. We wait as his blood counts completely bottom out. Wait to see if and how bad he gets the mucositis this round. And then wait for his counts to start to come up so that he can heal and feel better again. Which they say with these heavy dose rounds, the counts can take close to 2 weeks to begin to recover to normal ranges and that is why they give the stem cell transplants in order to help them with this. So we wait and we pray. Pray that his body stays strong and can fight right through these next few weeks. 🙏🏼 🙏🏼 🙏🏼 🙏🏼
Our Warrior Journey 