As for the rest of our family, Violet spiked a fever yesterday (Murphy’s law!) so mom is quarantined at the hospital and dad at home with violet. She is fine, but this is our new reality – germaphobia! We know we can’t keep Violet in a bubble (but Lucy we sure will try!) but this is a good time to note that we have to be really careful now with an immunosuppressed kid. Anyone that comes in contact with us for a while may have to fill out a health questionnaire, lol! Not really, but please don’t be offended if we are kind of neurotic about it. The docs and nurses tell us “that’s life” but this is one thing we can control, so we will try. We will be getting our flu shots!
Lucy is still pretty happy today! I gave her a sponge bath which she did NOT like, but I can’t blame her – that’s embarrassing! All her chemo is yucky and aggressive, but she is starting a pretty rough one for the first time today. So far so good – hoping and praying she stays comfortable.
After just two days of chemo the doctor is very pleased with her plummeting white blood cell counts – now we hope for them to drop, so confusing. God is hearing us!
Well we made it!! Finally upstairs on the “hemonc” floor. It’s much calmer and more comfortable up here, and Lucy has been showing off to her new doctors and nurses with coos and smiles.
The initial spinal tap was sent off for genetic testing of the leukemia cells and today we were told the results. Unfortunately it was positive for the more aggressive form of leukemia. However, Lucy’s wonderful oncologist was still very optimistic when she saw how great Lucy was doing this morning. She said that if Lucy is a responder to the chemo and treatments then it makes no difference at all what kind of nasty leukemia it is! This doesn’t change her treatment plan. Because of her high risk he treatment was already aggressive.
Today’s and ongoing prayer request – let Lucy be a RESPONDER!!!
We will move to a private room in a day or two and settle in to our “home away from home” for the next four weeks. Hopefully settle into a new “normal” soon!
First doses of chemo went ok yesterday afternoon. Lucy was a bit uncomfortable but the nurses have been very accommodating when I asked for pain meds and more anti nausea meds. My girl is still nursing like a champ! They said the steroids can increase her appetite. It has been much easier to nurse her since she has had so many tubes taken out over the past 24 hours. Poor baby was just a big tangle of cords! I can’t remember the names of all these different ports of entry, but it was a lot!!! She is down to a pic line in one arm to administer chemo and Foley catheter. Yea!! After getting the meds she settled in and slept great last night, and is in a pretty great mood this morning.
More good news – word is we will get to move upstairs to the oncology floor. As nice as everyone here is, they keep telling us it will be so much better upstairs.
Father Doyle from St. Michael’s parish, which is where Violet goes to preschool, came by today and gave Lucy the anointing of the sick. She loved the attention on her! Violet has been going to preschool at Holy Cross for all of two weeks and when we told them what was happening in our family the support from the school and church was immediate and amazing.
As I think Josh mentioned, we are reading every message and each one lifts our spirits and gives us strength. Thank you!!
Lucy is officially starting her four weeks of intensive treatment this afternoon. We are so ready to start beating down this cancer, but the thought of giving my baby such harsh chemicals hurts this natural living, breast feeding Mama’s heart. I’m asking for prayers today for Lucy to endure this process.
However, this girl is tough! She has been awake and alert today. Sometimes playing with toys but mostly trying to yank on her cords and suck on her hands. She has been nursing like a champ, and even took some breastmilk by bottle which we could NOT get her to do before!
She will remain in the PICU for the next few days as they monitor her body’s reaction to the chemo. Then we will move to the oncology floor and settle in for a few weeks.
Our niece Anna made Lucy a beautiful get well card and we are welcome to hang things like this in her room (but no flowers) so all of you with kids, or who are kids at heart, we would love to spruce up her boring room with anything creative messages of encouragement and love for Lucy!