So here we are on day five just rolling right along. Riley got her last dose of Busulfan overnight and while she tolerated it wonderfully I am glad we are done with that one. She received Busulfan every 6 hours (9 a.m.-3 p.m.-9 p.m. and 3 a.m.) for 4 days. Along with the evening dose at 9 came the pharmacokinetic studies which is a fancy term for blood draws. They monitor the levels of the chemo in her blood to follow how her body metabolizes it and adjust the dose so she receives the exact amount they desire over the course of her treatment. Blood would be drawn 15 minutes prior to the chemo, 15 minutes after, 30 minutes after, 1 hour after, 3 hours after and then again at 6 hours after. I’m sure that clears up any doubts you had about my lack of sleep 😉 She is a champ…she would sleep through the chemo and the studies, Mommy however not so much…with all the beeping, footsteps, rubber glove removal and door closing there really is little point in even attempting. The nurses are so wonderful, I don’t want to sound like I am complaining…I am not by any means, just giving a glimpse of what this lil party we’re attending has been like. Along with the chemo itself she receives additional meds through her IV…everything from anti-seizure infusions to Zofran for nausea and Benadryl to help relieve the itchiness caused by her rashes and that is just to name a few. On top of those she is still putting down between 3-5 oral medications daily. This lil baby is chalk full of all sorts of goods and handling it like a pro.
Today she started the second phase of chemo…phase one drugs made room in the marrow for donor (my) cells while phase two drugs begin killing off the current cells in her body. I’m sure you can guess that phase 2 is likely to be a bit more uncomfortable for little Riley. The upside is she only gets chemo twice a day now and the blood draws are minimal. Fludarbine and Thiotepa and are the two drugs she will be receiving now. The Thiotepa excretes through the skin and so protocol will be to bathe her 3 times daily to get the chemo off of her skin as it can cause burns. Luckily for all involved Miss Riley LOVES bath time especially since my dear friend Courtney hooked her up with a big comfy tub and towels last week. Hospital textiles are simply atrocious. 😉 Bed linens will also be changed with each bath to reduce the spread. So basically our days now will be eat, poop, bathe, groan, giggle, sleep, repeat.
Life down in the PCRC was pretty uneventful, she had some oral meds and vitals twice a day but for the most part it was all down time. There is not really any down time now that treatment has begun. Besides the IV and oral meds there are the creams…oh the creams. This kid has got the cream regiment of a hollywood housewife I swear, she’s got a cream for every little bump, blotch, crack and crevice. Desonide twice a day on all rashes, Bactraban on her back 3 times a day, Bacitracen on any open sores as needed, A & D ointment on top of all of those to seal, hydrocortisone and desonide on her face as needed and then there is her booty regiment which evolves daily depending on how her diaper rash is doing. IV meds-check, oral meds-check, creams-check…oh yeah then there is the mouth swabs to be done 4-6 times per day to reduce the discomfort of the mouth sores caused from chemo and also those multiple baths , bandage and linen changes. I’m telling you we’re busy around here folks 🙂 The beauty of it all is that she is only 3 months old and knows no other way…to her life is Mommys undivided attention plus tons of friendly faces oohing and awwwwing at her around the clock…not too shabby from her perspective.
After today we only have 4 more days of chemo then a day of rest and that takes us right into transplant day. We are getting so close. I continue to thrive off of the support we are given on a daily basis, thank you all so so much.
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