This week we were informed that Jonathan does NOT have the P 53 mutation that would cause hereditary pediatric cancers and would cause radiation to put cancer throughout his body. A dance party ensued until Jonathan told me my moves were embarrassing.
Needing an extra day to prepare, the radiology team moved the start date to Wednesday, Nov 1. Jonathan’s last day of school was Friday and what a GLORIOUS day it was! His teaching team declared it “Jonathan Day”! His classmates wore ties, button down shirts and/or flannel and he got to share his Star Student poster. He came home with a bag of goodies and an enormous smile. I can’t rave about this school enough. They will make sure he continues with lessons during treatment with the home-hospital plan. He is academically ready for first grade, but the social aspects were crucial. Being separated form class for a year is a major step backward that requires continued trust in God to bridge.
OUR SPECIFIC PRAYER REQUESTS:
- Last night a storm rolled in and I felt those first pangs that remind a mother she is in the 4 week window before birth. Her due date is Nov. 25. Nothing to call the hospital over, but enough to lean up against the walls and start making up jibberish cuss words. PRAY Elizabeth Joy doesn’t join us early. A NICU stay would be a serious challenge.
2. PRAY JONATHAN STAYS HEALTHY- NO COLDS or RSV especially. Radiation requires sedation for young, wiggly kids so the radiation can hit precise locations. Catching a cold means delaying sedation and treatment ONE WEEK. This can potentially move our end dates back a month.
3. Pray for Jonathan’s peace and bravery as we begin daily treatments. We will have two new sensory obstacles: putting numbing cream and bandages on over his port and wearing a hospital mask as protection. I am confident he can adjust, but it will take time. He will be exhausted and a bit disoriented as we start and his immune system wavers.
4. Pray for our faith to be strengthened and for us to choose joy. We will be celebrating William’s birthday, tackling Daylight Savings changes, preparing for a baby and doing all the usual things families do in the midst of all the new trials. We must choose thankfulness and to celebration.
5. Pray for my adjustment to living in an isolated bubble. Having a new baby can be lonely for mothers, but not being able to take Jonathan or Elizabeth out during winter and treatment will be challenging for my very extroverted, people-loving self.
We are VERY thankful for the encouragement, letters and packages. Y’all are bringing great joy to Jonathan!
How does one prepare for cancer treatment? Well…
It is ESSENTIAL that Jonathan stay as healthy as possible. As he receives treatments, his immune system will decline to nearly zero. Things a typical body can fight will be very dangerous. During this cold, flu, RSV, HFM, etc. seasons, it is especially dangerous. During chemotherapy, William struggled with extra illnesses caught when immunity was low. In March I was scared he wouldn’t survive.
ROOM CHANGES AND DIY PROJECTS: Jonathan’s room will now be the lower level. We are taking up the carpet and putting in easy-to-clean flooring for germs and to easily clean “illness” grossness that can come with treatment. Mopping is easier than carpet cleaning. His bed and toys will relocate and William will get a room to himself.
CLEANING: When family members return from school, work or errands, they will immediately shower/change clothes/wash hands. Toys, especially Legos, will be washed often. Even shoes, backpacks, stuffed animals, etc. At each door we have Clorox wipes, Purel and masks. Lysol disinfectants are added to the laundry. Cars will be disinfected and as well.
THERAPY: Therapies are cancelled until further notice for both boys. William and I spend 11-3 at therapy each Wednesday. There is NO prayer of going and not getting sick from the other great kids. All the therapists have already been sick. The logistics of therapy and treatments require an extra person and I’d have a new baby in a waiting room for 4 hours. “It’s just allergies” is a lie from the pit of Hell, and even the most diligent mother can have a kid go from perfectly fine to a fever in an hour. As much as physical therapy, occupational therapy and speech therapy help, William will still receive them at school.
LOGISTICS: If it can be shipped to the house, it will be. I can’t run to the grocery store or to Target with the baby anymore; I will be home with Jonathan and Elizabeth after treatments. When another adult is here to cover down I can leave of course, but thank goodness for grocery pick-up and delivery. (All the nursing mothers said, “Amen”.) The meals have been a HUGE help– thank you ladies!
WILL THESE WORK 100%? Probably not. However, with a new baby and Jonathan’s compromised immune system, it is essential that we live in a bubble.
For now, we are doing lots of house projects, cleaning, and preparing Jonathan. We are bracing for impact but feeling encouraged and thankful for all the support.
I will write a report on Wednesday night after our first treatment. Thank y’all for everything.