On Wednesday and Thursday of this past week, Collin received more Carboplatin. Carboplatin isn't as nauseating as other chemo drugs, so the days went pretty smoothly and Collin seemed to feel pretty well. On Friday, Saturday, and today, the Thiotepa and Etoposide were given. The Thiotepa is the chemo that is excreted through the skin, so Collin had to be bathed every six hours for the three days he received the Thiotepa, and then for another twenty four hours after the end of the last infusion of Thiotepa. We tried to come up with a bath schedule that didn't interfere with the hour he has to eat each meal, but unfortunately there was no way to avoid waking him in the middle of the night for a bath. The schedule we decided on was 3:30 am, 9:30 am, 3:00 pm, and 9:00 pm. Normally I try to have Collin in bed for the night by 8:00 pm, but I didn't want to wake him an hour after getting him to sleep, so I kept him up until the 9:00 pm sponge bath was done. After each bath, all of his bedding had to be changed, and Bill and I wore gowns if we were holding him to protect our skin from having prolonged contact with the chemo. The schedule has been draining on Collin and me; we are physically and mentally exhausted. The last scheduled bath will be 3:00 tomorrow afternoon, and then we can return to a more normal routine of earlier bedtime, fewer interruptions of sleep during the night, and one bath a day. Collin's skin is red and sore from the chemo and baths. The dressing over his Broviac had to be removed, so following each bath, the site had to be cleaned with Chloraprep and covered with gauze. The Chloraprep stings his skin, and we've had to be extra careful not to accidentally pull on his IV lines since there's not much of a dressing in place to help prevent the Broviac from being pulled out of his chest. Monday afternoon can't come soon enough.
Over the last few days, Collin's appetite has decreased. He seems interested in his meal tray when he sees it, but then doesn't eat very much. He has had some episodes of vomiting, and is on staggered doses of Zofran, Benadryl, and Ativan to help reduce nausea. The taste of some of his oral medications seems to make him gag and throw up, so it's getting harder to get him to take his meds. He is expected to start with mucositis in a few days, so Monday afternoon his feeding tube will be replaced before it becomes too painful to do so. At least then it will be easier to get his oral medications into him. Monday and Tuesday are days of rest (no chemo), and then on Wednesday he will have the transfusion of his stem cells that were collected on Memorial Day that will rescue his body from the effects of the high dose chemo he's received over the last week.
Jenn, so glad you were able to find time to keep us updated in the midst of all that you are doing for Collin. You all are never far from our thoughts and prayers. As much as we look forward to these updates, please be sure you are taking care of you the best you can...rest when the opportunity (rarely) presents itself. And remember, you are an AMAZING mom!!
ReplyDeleteI guess you being an awesome mom is the theme of the responses! I was going to post how blessed Collin is to have you for a mom. And Neya is blessed to have you as a mom, too.
ReplyDeleteI keep you all in my prayers daily. Hopefully soon - this will all be but a memory.
Many thanks for the update... thinking of you both and praying for smooth sailing tomorrow!!!
ReplyDelete<3 <3 <3
Kim Says... Glad to hear things are going well so far. Hang in there. Praying for all of you . Take care.
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