Weighing in at 59.2 pounds, from Austin, Texas
Weighing in at 59 pounds, from Austin TX
I remember in winter of ‘21 when Lucas’ weight plummeted to the high 30s from the high 40s. The doctors were concerned that he was going to have to have what is called a “G-tube” put into his stomach to feed him. This terrified me, this terrified Erin. He had already been through so much, so much pain, so much chemo, so much invasiveness in his body. Lucas’ medical records were over 3,000 pages at that point. To technically lose 20%+ of your body weight in such a short period of time when you were already skinny was a kick in the teeth and a sign of malnutrition. For a while it felt like nothing we fed him was working, post transplant, and many times before Dylan shared her amazing cells with him.
These were hard times. God carried us through those times. We tried to move forward, one step at a time. We became Whole Foods junkies, we went there , literally all the time. We focused on calories, getting a supplement called Benecalorie, which you can use to beef up simple meals without messing with the taste. We used the LoseIT app, and jokingly called it the GainIT app to track his intake. If Lucas could eat 1200 calories a day, we were good, we just had to figure out how to split it up, where to include the multiple medications he was on so that it did not overload his stomach and cause nausea and vomiting. He was on SO MANY meds it was hard to keep track of, we even have a chart which to this day is stuck to the fridge to track what meds he had and when.
Yesterday, August 18th
Lucas weighed in at DCMC yesterday at 59. He is going for 60. We go to Julios in Hyde Park on Neurological visit days, and yesterday he was blocking me from eating the chips. Lucas loves the chips and salsa at Julios. The woman who runs the place loves him and always smiles when we come in. “No school today?” she asked. I think about all the times people have asked that question when we are doing PT, out running errands or up at the pool.
We got some great news from the Neurology team. 689 days after he had a status-epilepticus seizure, they think it’s safe to start weaning him off of Kepra, the anti-seizure medicine. They said that his eyes look healthy, normal, and his reflexes are vastly improved from when we first got back from Philly in June of last year. Lucas was goofing around big time at the doctor yesterday, really cute.
We remember everything, we remember it all. To say we are grateful is an understatement.
School
Lucas went back to school after spring break last year, he had missed 1st and second grade. The team at Casis, and his teacher Jessica Garcia were amazing to our family. No stone was left unturned when he went back. Erin and I would go up to check on him during recess, we were crazy about making sure he had everything he needed and always minutes away if he needed to come home. Lucas did not need to come home much, he didn’t want to, he just wanted to be a normal boy.
Before he went back to school, when he was tested in February for his reading “MAP” test, he scored at an 8. You need to be at a 28 to be proficient enough for your age cohort to be promoted to 3rd grade. When Lucas applied to his new school, Trinity, it was at the 2nd grade level. The 8 score was given to him by their team, and it was pretty clear to everyone that he needed to repeat second. Until this summer.
Ms. Garcia told us that she thought he was ready for 3rd, but he had applied to second. We got copies of his MAP testing, and he had tested at a 28!! Lucas is going to the 3rd grade, starting next week. Going from an 8 to a 28 is an amazing achievement, and shows the power of his will to learn, but also the incredible power of teamwork and amazing teachers! Ms. Garcia made it fun to learn. In an era of challenging education, she stepped up to the plate and we are forever grateful.
Prayers
Lucas is still on genetic mutation inhibitor called Gilteritinib, likely for another 6-12 months. We pray that this drug inhibits the FLT3 Genetic mutation from returning to his precious body, coupled with the efficacy of the protocol he has already had. We are grateful for his sister Dylans bone marrow, and we are grateful for our medical team. Thank you for Lucas’ response to the meds, and please continue to hold him in your hands God.
We thank you for Lucas’ ability to learn, to grow, to be in the 3rd grade at the same school as his big brother, Jack.
Please God keep Lucas neurological functioning optimal, let him learn like he deserves to learn, please let his body, mind and spirit thrive in the face of the radiation that he had to have on his brain and body. Please let his body grow, let him stay on the growth track that he is gratefully on, and let him stay forever cancer free.
