The majority of this treatment involved us cutting a pill in half and Emma chewing and swallowing it.
The last week has been a bit of a whirlwind, but I we have survived! We met with Dr. Abromowitch on Tuesday and we decided to move forward with starting on TPCV. Once we had decided it things moved pretty quickly. We were lucky enough to get all of the oral meds here in only a few days, which meant we could start chemo Thursday night. TPCV consists of four different drugs, three of which are oral medications. This regimen requires Emma to take oral meds every six hours for a 78 hours (a little over 3 days). Then she goes into the hospital on days 14 and 28 to get a push of Vincristine through her port. Then she has two weeks off and we start all over again. The nice part of this treatment is once we get through the three days of oral meds she does nothing except for on days 14 and 28. However, the oral meds every 6 hours for 3 days is a bit crazy.
Starting a treatment with oral meds is always a bit overwhelming for Brent and I. When Emma gets chemo at the hospital we don’t have to handle the meds or administer them and the nurses are always there to keep on eye on her. When we do meds at home, we are completely responsible for handling the meds, preparing the meds, giving the meds and monitoring Emma for any reactions or side effects. Having done oral meds at home last year, we knew to expect this again. We got our training and information from the pharmacist on Tuesday at Children’s and then waited for all the meds to get here so we could actually see what we would be working with. We had some wonderful friends who helped us out by going and buying many of the supplies we needed, which was so incredibly helpful. (We are so blessed with good friends) Because Emma can’t swallow pills and is so young we have to cut pills and empty capsules out to put in food so we needed a variety of disposable items as well as supplies that would only touch the chemo pills.
The worst of this treatment so far has been emptying four capsules and having to get Emma to swallow it mixed with whipped cream. Needless to say she didn’t enjoy it very much.
We started with the first dose at 6:30 Thursday night and have given Emma one or two different meds every 6 hours. I think we have about 3 alarms set to go off every 6 hours so we don’t miss a dose. Luckily, Emma has tolerated the new meds fairly well so far. She takes only Thioguanine for the first day and a half, which doesn’t typically make you too sick, so she seemed to feel pretty good for the first two days. On Saturday morning at 6:30 we added the Procarbazine, and added CCU today. These both can make you feel more nauseous. She has been a bit more whiney today and slept a little more, but other than that has done pretty well. Miss. Emma has been super cuddly, so we have enjoyed some good cuddle time this weekend. This protocol is hard on blood counts so we will have to watch her counts pretty carefully while she is on this treatment. We have one dose of meds left tonight at 12:30, so hopefully that will go well and then we can settle back into a normal schedule for a few weeks.
The first time through a new treatment is always stressful, but we have thankfully survived and hopefully it will go even a little smoother in 6 weeks. Thank you to all of you for your prayers and support as we start this new part of this journey.
Even through all of this Emma smiles and only wants to play with her Aiden and toys. She is amazingly tough.
Also, a quick reminder that the 2nd Annual EmmaStrong Drive for Cure is quickly approaching. The golf tournament is May 30th and now less than two weeks away. If you are thinking of playing or joining us for dinner get yourself registered at www.emmastrong.com/golf. The big day is getting closer, so get those registrations in. We have a lot of great prizes and are excited to see you all there!