Friday is Day 21 of our 2nd stay in the hospital. Some things that have happened in that time…
- The Super Bowl
- Des had two stomach perforations (both successfully repaired).
- Valentine’s Day
- Single-digit temps and snow
- A 60-degree day
- We read Curious George about 500 times
- Luke, Solomon, and I finally got haircuts
- Desmond officially went into remission
It’s been a busy February. But today also marks another important milestone…the start of the Consolidation Phase. He’s well enough to begin treatment again.
This 8-week phase includes lots of chemo and his immune system is about to take a big hit. So hard that when this whole thing is done in a couple of years he may have to be re-immunized for the vaccines he’s already received. Wild.
So he’s in remission which means we can’t see the troublesome cells. This phase will start targeting the stuff we know is there but we can’t see. (I think).
And in Des’s case we’re going a little harder than a typical B-Cell ALL kid. That’s because they found that he has a “Philadelphia-like” gene. Now hang with me…
Philadelphia positive (Ph+) patients have a specific gene that causes the leukemia to be more aggressive. Especially if it ever comes back.
Des is not Ph+ but he does have a gene that is similar enough (they call it “Philadelphia-like”) so they’re adjusting his treatment to be on the aggressive end. Even though he’s not in a high-risk group (because of his young age) the doctors really want to knock this out and we’re treating it hard upfront (now).
He still has a very good prognosis.
Overall he’s doing great. So great that we’re hoping to be discharged tomorrow (Friday).
The surgeon who patched him up both times was really pleased to see his progress this week. And really everyone else is, too; his nurses, the hematology/oncology doctors, occupational therapy, physical therapy, the infectious diseases team, respiratory therapy, the janitorial staff, and both members of his parental department.
He’s sitting up more. Talking and even smiling a little. He’s playing with toys and even eating a little (today he managed a popsicle and his Holy Grail of food…a slice of pizza).
So his prescription is really just the recipe for a good day for anyone—take some deep breaths, get up and move around, smile, and get yourself some pizza.
We’re looking forward to going home. Being together and healing in a more comfortable place (with fewer beeping monitors…)
P.S. My sister Lynsey graciously designed some Des-themed gear and set up a whole online store. Yes, really and I still can’t get over how cool it is. You can check out the designs over in the shop tab or just click right here.
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Thank you for detailed update, Matt. Hard to get our minds wrapped around all of it, but certainly not our hearts. Thankful, too, that you & Sara have let our church body really see into your very personal struggle & experience.
It has touched not only your families, but our church family as well. God bless you!
At times when there are only one set of “foot prints” in the sand, GOD is carrying us…..we “praise” HIM for carrying you guys thru this journey.
Thank you for the updates. Everything appears positive and heading in a good direction. Good thoughts and prayers for all.
I pray for your family and that you feel God’s presence with you in this journey. I’m thankful for the wisdom that God gives the medical team and we will keep praying for God’s healing hand.