Happy Birthday Lucas !

First snow of the season , Fitler Square, Philadelphia PA

12/22/13

Lucas was born at 10:46pm on 12/22. We didn’t know what to name him. He was going to be Dylan, but he wasn’t a Dylan. Shortly before we came home on Christmas Eve, we decided on Lucas Patrick. Little did we know that his name means ‘Bringer of Light.’ We find this significant because today, December 21st, is the Winter Solstice, the shortest day of the year. His birthday marks the first day of light returning. This birthday is special because for the 1st time in 800 years, Jupiter and Saturn will be in close alignment so the Christmas Star-the Star of Bethlehem can be seen bright in the sky tonight (Dec 21).

Meeting the transplant team at CHOP

When we met with the transplant doctor last week she made is very clear he has to be under 1% cancer cells in his body at the time of the next biopsy (January 4th) or he will not be admitted on January 11th for transplant, since the risk of relapse is too high. Since his marrow miraculously went down from 70%+ in early November to 0.8% in early December our team believes this is possible!

We would greatly appreciate any and all prayers and energy for Lucas to be at ZERO. This would give him the best chance for a successful transplant in January. The way the doctor explained it is that if he still has disease in his body even a little it would be like ‘masking a fever’ and the risk would be greater that the transplant would not work.

Big Thanks

Thanks to so many of you for helping us with Christmas gifts, meals, food, accommodations and transportation. I feel like we have a team of Lucas warriors who are carrying us thru this quite literally when it’s just too much and we have to ask for help. Since Dylan (Lucas donor) has to be 100% healthy, Kendra Scott flew Erin, Jack and Dylan back to Philly Friday. The AKA team is hosting us again and did a beautiful job decorating the apartment.

No more cheesesteaks !

We have been reading up on how much food can affect the body and cancer. Our goal right now is to get lots of healthy recipes and groceries, so we are becoming regulars at Whole Foods. If you would like to share recipes or help with the ‘No More Cheesesteaks’ campaign, please click on this link :)

Patient Advocacy - COVID Vaccine

We meet with leadership tomorrow about the distribution / methodology around the COVID vaccine. We hope that we can advocate for those that don’t have a voice. For all the families with kids going through transplants, kids in the NICU, kids receiving organ transplants. The families that are inpatient for weeks at a time, the ones that are the defacto primary caregivers for their children. We hope that those families, those caregivers can receive the vaccine to protect their children, their families and the rest of the greater community. Thank you for those that liked the Linked In post and who also forwarded it out.

Happy birthday Lucas Patrick Gourley, we love you.