8 Month Biopsy
This Friday 9/24:
Lucas has his 8-month biopsy September 24th at 8am.
This biopsy will test the same 5 things as in July and the end of May
1) Bone marrow for MRD mininally residual disease
2) spinal fluid
3) FLT 3 genetic mutation
4) and his engraftment of Dylan’s cells.
What this means, whats next:
These tests are important, Acute Myeloid Leukemia in the first year post transplant needs to constantly be monitored. Many people have asked how Lucas is doing, and he is doing great, but when we have to have these biopsies it brings back a lot of emotional trauma for our family. He has to have bone marrow taken out of his lower back / hip area for the 12th time in the past year, and he has to have a lumbar puncture. So it’s a nerve-wracking general-anesthesia procedure, that, to be honest most families would probably talk about for the rest of their lives, but this is his way of life.
We have to do this. We still need your prayers and support.
The samples be analyzed in Austin, and then sent up to CHOP (Philadelphia) as well as Washington to the most sophisticated lab in the world.
We would greatly appreciate your energy and prayers for Lucas to get positive results showing no cancer, leukemia or any disease in his body.
Prayers - 8 pm EST this Thursday, September 23rd
The past month for Lucas and the family
It’s been a road and we’ve been working hard at ‘staying in the light’. Unfortunately, his little sister (his perfect genetic match) Dylan, was exposed to RSV in the first few days of Kindergarten. She got very sick and we had to move her out because Lucas immunity system is so compromised. RSV rampaged thru our house. Lucas caught it, and got pretty sick and it was scary because if he got a fever he would have had to be admitted.
Thank God he did not and he’s on the other side of it now.
Many people don’t know this but “pre transplant” they brought Lucas down to the brink-meaning, every immunization he’s ever had since birth was eradicated. He won’t receive immunizations until close to the one year mark post transplant.
Because of the risk, we decided to pull Jack and Dylan from school. So now everyone is homeschooling. Jack 10, Dylan 5 and Lucas 7.
Food, Exercise and Mental Strength
Chemo from preparation for a bone marrow transplant wreaks havoc on your entire body. It crushes your appetite.
Lucas’ weight has been a challenge to keep up and he got down to 47 pounds. He struggles every day to eat, but we have started cooking more “Lucas Food” recently. He loves blueberry muffins and baked goods for breakfast. He is on 6 different meds still, and we keep a magnet whiteboard on the refrigerator to make sure we track everything.
Lucas resumed PT with Brian every morning, and is playing a decent amount of tennis. Westwood has some amazing coaches including Lucas’ favorite “Coach Dave” who has been one of our biggest advocates. Watching Lucas confidence regain, as he crushes a 2-handed backhand could bring tears to the most hardened military veteran.
PTSD reared it’s ugly head (common 6-12 months post transplant apparently), and we’re trying to keep his spirits up. Physical activity helps with this as does routine. He’s realizing all that he’s been thru and his limitations on not going to school, seeing friends, etc.
He wants so badly to be a normal kid.
Lucas still has a road and fights the battle with his unyielding strength and courage. ‘Living on a Prayer’ came on last week when we were leaving his neurology appointment. We hadn’t heard that song since we were in the CHOP Starbucks pre transplant in January. Lucas pointed out that he’s come pretty far since the last time he heard that song. We’re all still living on a prayer and won’t stop praying for him.
With heartfelt gratitude we thank you for praying for Lucas this Thursday night 8pm EST. We pray for a great biopsy, for a good week leading up to it, for our healthcare providers, and for his siblings. We pray for Lucas God, every night, every day.
We will never take for granted the fact that we are here, and that we have a loving community around us.
