The Natural + Springtime
foreword by Brian Gourley
We have 3 oak trees we planted in our yard. One for each child. I can’t help but watch the trees bloom this year especially closely as I view the renewal and rebirth of our family. Completely touched and more aware by the grace of it all than I have been in my entire life. Sometimes when Erin and I watch Lucas and Jack play baseball with Dylan in the stands it feels like we are in a trance. I used to go to baseball practice and feel kind of tired, but now when I go I view it as a chance to spend time with our kids that cannot be replaced. It’s hard to explain the preciousness of it all.
Spring is here at last…Gratitude and Joy
by Erin Gourley
Back to School
Last August when we dropped Dylan and Jack off at school (before we pulled them out until December), Lucas walked home with us and asked when he could go to school. The answer ‘Springtime babe'. When we got home he asked ‘when is Spring, Mommy?’
Lucas was a bit uncertain about going back at first. He would comment that he has no friends anymore. He was concerned kids would ask him a lot of questions about cancer. He doesn’t want to be considered different. Lucas just wants to be a ‘normal kid’ and do ‘normal kid’ things. The transition was smooth. We are so grateful for Ms. Garcia and the team teacher Ms. Raley who have been OUTSTANDING as have the administration and the second grade team.
Thank you Casis for taking Lucas under your wings.
Miracles:
When most doctors thought it was impossible, Lucas has been guided by God through all of the chemo, bone marrow transplant, back home, to the 1 year post BMT mark in February and now back to school and sports. There are more big milestone markers on the horizon. The next significant milestones are the 18 month (Aug) and the 2 year (Feb 23) when the curve shifts significantly in terms of 5-year survival rates.
We’re praying for more guidance on how long Lucas needs to stay on the inhibitor drug called Gilteritinib. He is tolerating it well, and is on the vanguard of children taking this FLT3 Mutation inhibitor. Adults typically are on it for 2 years, but there is not enough data around children.
Thank you for continuing to pray and believe in Lucas. The past few weeks especially have been surreal and we are so blessed to be at this point. Lucas amazes us daily and it’s beautiful honestly to see him embracing every single moment, experience and interaction with such joy, light and appreciation.
Highlights:
Lucas nightly prayers- Every night Lucas prays and does so quietly as he holds his rosary beads. Lucas is private, but he shared some of his prayers with me the other night. He prays to God and Jesus and thanks them for him being healed. He prays for our family to never get cancer. And he prays hard for the children battling cancer and those that are getting bone marrow transplants. He has a list of many children every night he prays for. He’s one compassionate and empathetic kid that’s for sure.
Last night he jumped in Westwood public pool for the first time in almost 3 years. What a moment! He and Dylan go to Ramsey park, and ride the slide together like when they were much younger. I would look at those old pictures so many times when we were in the hospital. We went to see the peacocks and instead of hiking the rocky terrain Lucas chose to scooter. I kept offering to hold it for him but his response ‘Mommy, I do tough things’.
School - Brian and I the first few days back showed up at recess to make sure he was okay. Thankfully, the 2nd grade team let us and were so supportive. He’s the only kid wearing a mask and putting on sunscreen before lunch recess because of all the radiation he received but he doesn’t care. He’s happy to be there. He loves playing football at recess with his old buddies. His response the other day ‘I GET to do PE at school and not PT anymore this is incredible!’.
Every morning at drop off, Lucas and Dylan hold hands walk thru the gate together and hug and go in their separate directions to class. Day 2 of school, we walked out with all 3 kids, and Lucas was so excited saying ‘I have a new friend who wants to do a playdate!!’.
Baseball- Lucas loves baseball. We are so grateful Coach Sammie took him on his team despite Lucas being a year too young :) He was his coach when he was 5 the last time he played. Sammie sent us the most beautiful text at the first practice saying ‘Lucas is truly my hero. I have never, and will never, experience such an amazing event in my lifetime. He is having a blast, catching and hitting everything’. Thank you Joseph family.
Jack & Dylan
Jack’s come a long way and many told us during treatment the older sibling would have a difficult time later. He has sacrificed so much staying home from school most of last year, all summer and most of the fall to protect Dylan (the donor) and then Lucas because he was so immunocompromised. He talks about the crying months a year and a half ago when we left for Philly and he wasn’t sure his brother was going to make it. He’s the sweetest boy and has experienced his own trauma more than any little boy should have to. But he is building back his confidence with baseball and at school. We’re so proud of him.
Dylan, she’s still our little warrior girl 5 going on 10. She’s doing so well at school. When asked ‘if you were President what would you do?’ her answer was ‘help the world and save the world’. She’s doing it so far!
What’s next for Lucas?
Brian and Lucas head to CHOP on Tuesday-Wednesday to meet with a world-renowned, dually certified Oncologist/Endocronologist. Due to all the radiation he received they need to stay on top of his growth.
Labs/not sure if a biopsy the end of June when we get back from Boston. Here we go again but we’re staying positive!!
Seeking second, third and fourth opinions on the Gilteritinib situation.
Thank you prayer warriors for loving and raising Lucas and our family up. We continue to pray for Lucas…
Prayers:
May his cells, and immunity be so strong and healthy continuing to engraft Dylan’s cells at 100%. May cancer, leukemia and disease NEVER come back to Lucas.
May he go thru childhood, adulthood and grow old forever healed.
We pray for healing from all the damage that was done to Lucas from the chemo and radiation.
May the inflammation in his brain be healed, his optic nerves, his organs, blood, bones and growth platelets be healed.
We pray for no secondary cancers to ever come to him.
