The next big milestone
by Erin Moore Gourley
The next big milestone for Lucas Bear is coming up….June 15th. This will be the day he gets off of Gilteritinib which is the chemo pill targeting the horrible FLT3 cellular mutation he had when he battled AML. Lucas has been on this chemo pill daily for 2 years come June 15th.
We attended Lucas’s 2 year post BMT (bone marrow transplant) appointment at the Childrens Hospital of Philadelphia in April. The transplant lead, Dr. Seif, thought he looked great. It’s amazing how far he’s come. She, then, went on to remind us that he is not cured until 5 years post BMT. Making it 2 years is significant and each year increases his odds of survival. She went on to talk about when he gets off of Gilteritinib what to look for bruising, fevers, etc. Quite frankly relapse risks were nothing we wanted to hear about and was a reminder that we are not out of the woods. But, we can’t go there and he’s defied every odd so far and he has to. I asked the doctor if we could keep him on Gilteritinib longer but the answer was no. Originally, they wanted him on it for one year but because adults are on it for 2 years and he was tolerating it they agreed to the 2 years. They don’t know the long term side effects of this drug and they can’t risk damaging his immune system in years to come. Lucas is THE trial in pediatrics with this drug and the medical teams are monitoring his progress.
Lucas’s blood counts will be tracked every 3 months for sometime. His counts were really good except his immune system counts were low and his liver counts high…likely due to Gilteritinib.
Our biggest prayer daily (as usual) is that the cancer, leukemia, all disease will never come back to Lucas. May he live and may the transition off of Gilteritinib be smooth, easy, and uneventful.
Make A Wish-
When Lucas came back from Philly in June 2021 and we were in lockdown due to him being immune compromised, I asked the kids what were their 3 wishes for 2022 (thinking this was a goal to get to the 2022).
* Lucas’s wishes- Disneyworld, California, and to meet Michael Jordan.
* Jack’s wishes- California, Boston and to meet Steph Curry.
* Dylan’s wishes- Disneyworld, Colorado and Boston.
Lucas applied for Make A Wish and went thru the interview process. His dream was Disney. Well, guess what, that dream came true over Spring Break in March! Make A Wish granted our family a trip to Disney. What a phenomenal organization. Every detail was attended to. We stayed at the Give the Kids the World Village which was 20 minutes away from the parks. The Village was magic and run by volunteers. Ice cream is served all day to paint the picture :) Many of the children there are still in the battle along with the survivors like Lucas. In the mornings and evenings, the families would gather in the cafeteria served by volunteers with donated food. Each evening had a theme celebrating the holidays because when you’re in the hospital you miss them. One night was Halloween, another Christmas, another a summer pool party. Volunteers drove around in the morning and at night with homemade cookies and coffee that they brought from home. One of the most beautiful experiences was the Castle of Miracles (video below). Every child that has been to the Village writes their name on a star and they perform a ceremony the next morning. Lucas’s star was put up amidst 190K stars. You felt like you were amongst angels being there because many of those children aren’t with us anymore. You felt the energy and the love in that space it's simply impossible to explain.
We are so grateful to the Village, Make A Wish AND Cedar Valley Middle School students whom we found out in March selected Lucas as their community project thru Make A Wish. These students not only chose Lucas but got business sponsorships, coordinated fundraising campaigns and pulled out all the stops to make Lucas’s dream come true. What a team of Angels!!
This experience was a gift, a blessing, magical, and the beautiful moments daily seeing Lucas, Jack and Dylan laugh, exuberant and happy couldn’t have been more precious. Thank you to every single one of you who made this dream come true! Amidst all the chaos of life, we were reminded once again of the miracles of life, gratitudes for others who have done so much for Lucas and our family, and the appreciation of every moment. To see Lucas, Jack and Dylan smile true happy blissful smiles that week we will forever remember. We have no words how much light, brightness and hope this trip provided especially to the kids.
Prayers & Where We Go From Here-
Lucas had a great school year thanks to the 3rd grade team at Trinity. Superhero teachers Ms. Culberson, Ms. Squires, Ms Brody and teams caught him up academically and you wouldn’t know he missed 2 years of school. If you remember this child did not want to be held back :) He’s going into 4th grade in the Fall but back at Casis. We love Trinity and the team has been incredible. He made some great friends but it’s best for our family for him to be back in the neighborhood school with Dylan. Lucas being Lucas is flexible and excited to be back with Dylan (she’s going into 2nd) and his old buddies from Kindergarten who supported him during the battle. Jack’s going into 7th at Trinity and we continue to be reminded he is the unsung hero because we sometimes forget how much this boy has been thru at such a young age. I’ve been praying for him more and more for his healing from his traumas as well. He’s such an empathic sweet boy who tries so hard.
The big day is coming and the days ahead post June 15th… we ask humbly again for prayers for Lucas. May the white light of the Holy Spirit flow thru Lucas so strongly keeping his cells, organs and immune system forever healthy and healed so that cancer, leukemia and any disease never comes back to this sweet boy. Thank you, thank you, thank you for continuing to pray for Lucas. Your relentless power of prayer is real and powerful! Lucas is a real life miracle and your prayers lifting him up have mattered and made a difference. We are forever grateful to each and everyone of you. Thank you thank you with all we’ve got!!
May the miracles continue for you Lucas Bear and may the light shine within and around you forever and always.
