So back where we left off... Tuesday 13th Charlotte had her LP, it came back clear- which nobody actually told us til way later but since we started the chemo right away we figured it must have been clear. Wednesday 14th we were admitted at 8:00pm, this time they were expecting us. She was hooked up for pre-hydration for the night. Chemo started Thursday 15th Dun Da Da Dun... New set of drugs to start, this is the phase called “Consolidation,” we were warned that these drugs will knock her down even harder than the stuff we have been through.
She actually was only given drugs for two days this time but the doses she got didn’t come without a price! One of her drugs, Thiotepa, is excreted through the skin, if left on her skin it would burn... That means that we had to wash her down every 6 hours, this was not fun! Even during the night. Have you ever had to wake a two year old up at 2:30 to give them a bath and then get them back to sleep? Not just a bath either but a full dressing change, we had to remove stickers and clamps to wash underneath then reapply them, only to have to rip them off 6 hours later! Never will I wince taking off a simple Band-Aid again... poor little sweetheart, her skin was so red and raw.
The kids usually get a tan from that drug too, and then we were told that their skin typically peels off like after a sunburn. AAAAHHh. Luckily Charlotte skin did not tan or peel too much, we must have done a fairly good job with the baths. The nurses all wore full gowns and gloves to come in to see us and we were put on isolation the whole time too so nobody accidentally touched her skin, as it was carcinogenic to others. By the end of each day Rob and I felt like we had itchy insulation on any skin that was exposed to her, extra scrubbing in the shower for us too. Initially we were told that we would have to bath her for 24 hours after the last dose that means we had to wash her for four days... when the doctor told that it was actually only while she was being administered the drug it was like an early Christmas present! Yahoo only washing her for two days! That was long enough. But she did pretty well; we found a treasure trove of warm blankets in the unit and took advantage of them during the nights.
The other “big” drug she is getting has more of the same side effects as the drugs during the first rounds... nausea and vomiting, loss of hearing, loss of electrolytes, decreased kidney function, decreased liver function, loss of hair... although her hair has been pretty stubborn at staying in, I guess red hair is more tenacious than other colours. She was fairly nauseous but regular doses of gravol and ondans kept it in check. Actually she did pretty darn well during the whole thing, to compare day to day with her first rounds she was eating better and happier (so far.)
Then on Saturday we had a “day of rest,” that’s what they wrote on our schedule, it was not exactly restful but we were not given any drugs. So far everything has been fairly smooth for this round, lets hope it continues that way.
Here is what her beaded journey looks like, the Kids Cancer Care have a program for the oncology kids to track their journey. We were given a journal book with a key for each colour of bead. A black bead is for a poke (IV, Inseflon insertion,) a red bead is for a blood or platelets transfusion, light wood coloured ones are for chemo drug days, Green are for her dressing changes, the little gold disks for her G-CSF shots (the really expensive ones-hence they are gold!) We also added a few of our own to the journey, I bought some little purple flowers to show when Yolanda gets to visit and some little hearts for when we got to go home for a few days. I think it will be a pretty neat learing tool to talk about with her in the future.
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