I am asking everyone to please pull together & pray for Keely & I this week. Starting tomorrow (as long as her counts are a-ok), she starts her next phase of treatment. Here’s the catch…
This phase was supposed to be a bit of a break (our next phase is the last before the “maintenance phase” & it will be hard! It’s their last attempt at hitting her really hard like they did in the very beginning before stopping all treatment except a little pill she takes every day during maintence & going to clinic once a month… chyeah, maintenance is gonna feel like we’ve made it to heaven). But since she had the allergic reaction to the PEG shot, she has to have the alternative to this chemo… so instead of one shot 3 different times in the next 8 weeks (which would’ve been the PEG shot), her whole plan of treatment during this phase has had to be changed. This particular chemo does a job that none of the others do, so it’s important (especially since she has high risk leukemia) that she get this drug. She is having to get the alternative, which is called Erwinia. This drug is not FDA approved & we are now in an experimental study. She is already a part of a clinical trial protocol, but it’s not experimental… it’s been going on for over a decade now. This new drug, Erwinia has not been around for very long & they are still finding out the side effects & more importantly… long term effects of it. This poses a WHOLE LOTTA red tape. The PEG shot is sort of like a booster… it is a large shot given intramuscular that slowly releases over 7 days, the Erwinia is fast releasing, so it has to be given 6 times to equal 1 time of the PEG.
Starting tomorrow, we will be in clinic 4 days a week. She will go in tomorrow & get the shot (it’s a shot, not an infusion through the IV like the other chemo’s). She has to have labs drawn before, & then again 2 hours after. Her & I also have to go up to the main part of the hospital & have an EKG done(heart failure/defects is one of the side effects that they know of)… & this whole process has to go on EVERY SINGLE time she gets this shot. Then we are back exactly 24 hours after getting the shot, on Wed. for more lab work, etc. She will also be put to sleep in the morning for the first time in about 2 months for a spinal injection of Methotrexate (a chemo drug that was part of this phase separate from the Erwinia). One round of the Erwinia is a total of 6 shots. So… follow the cycle… Tues-gets dose #1, Wed-labs, Thur-gets dose #2, Fri-labs, Saturdays & Sundays off (thank God!). Then we’re back on Mon to start dose #3… and so forth. Since she has to do these 6 shots, 3 different times through this phase… this will be our life for the next 8 weeks. A total of 24 shots every other day, with labs drawn on the off days.
So… that’s a whole lot of information to say this. We need prayer. It’s alot!… for her & for me. Brian will be out of state this week on a mandatory business trip. So I’m on my own to start this unfamiliar journey with her.
Please pray that Keely will hold strong, having to do this every single day (getting accessed AND getting a shot every other day *ouch*, & just being in clinic 4 days a week for the next 8 weeks… that’s so much for a 4 yr old), pray that the chemo goes into her little body & kills everything bad & leaves everything good unharmed! Pray for a sound mind (in the decision we made to indeed choose to give her this drug because it has such an important job in her treatment plan, since we had the option to decline), pray for my strength to get through this first unfamiliar, hard week without Brian.Pray for the boys!… because they pay the price for these circumstances as well.
I know that having a spirit of dred is not godly (I believe the Bible refers to it as “evil forebodings”), so I want to ask that you also pray for the Holy Spirit to give me a spirit of peace, comfort, & gladness, fresh each morning.
… & this too shall pass.
Thank you everyone for all of your amazing support. I don’t know where we would be without all of you!
Posted in christianity, family :), Keely's Journey, Leukemia