So.
Um.
Well, Phase 2 of Maintenance started today.
What does that mean...
He had his port accessed (needle in chest), sedation, another lumbar puncture (needle in spine) with an injection of methotrexate (chemo- MTX) into his cerebral spinal fluid, and an infusion of vincristine (chemo).
He starts 5 days of steroids tonight and continues his nightly mercaptopurine pill (chemo- 6MP).
He will have weekly doses of oral MTX on Tuesday throughout this phase.
This repeats two more times (once without the lumbar puncture): in one month and then in two months.
Nothing new will be added in this Phase- praise God.
Dempsey had planned, in advance, that we would go to Chick fil-A for lunch after procedure and then to the Santa Ana Zoo. So, we did just that. It is always remarkable to see him RUNNING around after having a needle in his back just hours prior. God is so good. I really do try to lean into Dempsey on days like today. Let him lead. If he's okay, I work to be okay. If he's not okay (rare), I work to be present with him in that. He did end up falling asleep on the drive home and we let him sleep at home too- 3 hrs. Hopefully he sleeps tonight.
The zoo brought a beautiful gift from God just for me. I was watching this lovely mom and her precious daughter on the playground. I told Jake, "I know her." He chuckled because of course I did. I called the mom's name and she looked around. I stood up from the bench I was occupying, raised my sunglasses, and she about had a heart attack. Such a big bear hug! The kind of hug someone you've known you whole life but haven't seen in at least a decade, maybe longer, gives. It was THE BEST! Of course we talked and talked and talked. I'm not sure if Jake was jealous or elated about his alone-ish time. So much has happened in both our lives and yet the encounter was as comfy as fuzzy slippers. We just slipped back into the connection of our youth and marveled at the hands life has dealt us.
Oh, I should let you know that Dempsey's liver enzymes are back above 1,000 again! *Infuriating* The doc says "we'll keep the 6MP at full dose and watch and see what his labs are next week". Um, my child isn't a science experiment!! Y'all, I need Divine guidance here. I'm about to lose my $#!&. This is the SECOND time his enzymes have skyrocketed and I KNOW it's because of his MTHFR mutation and the dosage of MTX/ 6MP he's receiving. I'm so livid I could spit. I'm planning to print out a bajillion studies showing the correlation and causation between MTHFR & MTX/6MP dosing and toxicity. The docs have to listen, right?
Pre-procedure
Post-procedure
Drive to lunch
At Chick fil-A (drama boy)
At Santa Ana Zoo
At home catching "zzzzz"
PRAYER REQUESTS
Pray for wisdom
Pray for truth to make itself visible
Pray for intentionality
Pray against negative side effects
Pray for strength and courage
Pray for health
Pray for opportunities to share about holistic protocols and the Lord
Pray that doctors will be open minded
Pray that ears will hear and eyes will see
Pray protection over Dempsey's liver
Pray that we will never miss Divine Appointments
Pray that we make the right decisions
Pray for peace and endurance
Pray for recuperative rest
Pray that my (Coral) PTSD would vanish
Pray for open doors
Pray that we will always keep a Right perspective
Pray for our marriage
Pray for Sawyer's brother-heart
Pray for advancements in childhood cancers
Pray for Divine partnership opportunities
Pray as you feel led
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