Beautiful Boy
Post round 5 chemo w Mommy last week
Good morning from Austin and Philly. Erin and I just got off the phone and agreed it was time to update everyone on some positive news about Lucas MRI, and let everyone know the team has accelerated the schedule for his transplant.
Transplant date 2/11/2021
Dylan and I drove back from Philly, it was time to get ‘the beast’ aka my Silverado truck out of Philadelphia. Trucks were not intended for central Philly, where a lot of horse and buggy streets exist. So, as mommy was with Lucas, helping start the 5th round of chemo, awaiting the MRI procedure and meeting with the care team, Dylan and I did a road trip. Its 1661 miles from Philly to Austin, and Dylan was a pretty wonderful traveler.
Lucas primary oncologist is Dr. Aplenc, he is the one that got us to the place we are, and is extremely humble and careful in his approach. He is an incredibly empathetic, caring man, who chooses his words carefully and keeps his emotions in check. Last Friday was the first time since Oct 25th that we have seen him excited. Lucas’ transplant careteam is lead by Dr. Alix Seif who has overseen over 1,000 bone marrow transplants. She was in the room when we had the family meeting. When she talked, Dr. Aplenc nodded his head, very positive, excited, ready for the next phase. They decided to accelerate the transplant and not only that, they were excited about it. It was like they were ready , confident, positive, prepared, enthusiastic and seasoned.
Conditioning starts on 2/2/21
Lucas will start to undergo “pre-transplant” conditioning on Feb 02. This will involve 3 days of cranial radiation and 3 days of total body irradiation (TBI). Since there are so many cases of another type of leukemia (ALL) that undergo similar radiation, the doctors have actually seen this a lot. They are very comfortable not only administering it, but have a world class team that anticipates side effects, treats them, and treats them moving forward in time. They have been here before, and have seen 1000s of children undergo radiation. The science has come a long way, and they believe this is the best way to get Lucas cells in his spinal fluid under control, similar to how they got his bone marrow to the MRD negative state that it is in.
I didn’t know this, but the spinal fluid is separate from the bone marrow when it comes to bone marrow transplant. So its incredibly important that we get this under control BEFORE transplant so that we don’t have to fight this battle post transplant.
AML is its own boot camp
Lucas has Acute Myeloid Leukemia. He’s been through months of hard core treatment, and he is a warrior. I do not use that term lightly. He is the record holder of laps with an IV roller pole attached to his body at MD Anderson (61), he is the one that woke up from the ICU in a rage yelling “I’m not going!” He has been to 4 hospitals. He wakes up every morning and check on the statistics and scores of his favorite sports players. He yells at refs during games. He is over legos, those were so 2020. He is more of a chess and parcheesi guy. Lucas goes and shoots hoops when chemo is done for the day. He loves playing minecraft with his bro and cousins. When we throw the football at the park, he wants to practice 1 armed grabs when its 30 degrees in Philadelphia. He loves breakfast tacos, so long as they are with flour tortillas. He likes to put his aquaguard on himself to protect his line from water when he showers. He wears Boston Celtic pajamas. He doesn’t show physical affection often, but when he does it could melt ice caps. Lucas has taught me and Erin more than anyone we have ever met in our lives. Our faith has strengthened, our prayers are steadfast and we believe in our team at CHOP, our family, our friends and everyone that has raised us up.
BELIEVE
Prayers:
Lucas marrow to remain MRD negative going into transplant
Lucas spinal fluid to get to a clear state pre transplant
No side effects from the radiation that cause damage to his organs / body
Dylan remains healthy and has safe passage to Philadelphia
For our family Lord, we need your support at home and in Philly to keep us strong
For our doctors and team, to make the best decisions about Lucas’ care
For no infection prior to the transplant
Schuylkill Park, Philadelphia PA
