Don’t Stop Believin’
by Erin Gourley
This was my high school field hockey song we played before every game. It always inspired our team to not quit and play hard. Brian played this song last Friday leaving the Cincinnati hospital. We had been praying hard for signs as to where to go after we agreed with our Doctor in Houston it was time for a larger Childrens hospital with specialists to care for Lucas. We prayed to be hit over the head with signs. The signs came very clearly the past few weeks. .
Brian drove up to Cincinnati almost 2 weeks ago and Lucas and I were flown on an angel flight by a generous family from Austin we don’t even know (thank you!). As Brian wrote angels are everywhere. We were walked to the plane and the team made two lines clapping and cheering for Lucas as we boarded. Two fire engines sprayed water over the plane as we taxied down the runway it felt like a blessing. Lucas looked out of the window on the plane (he’s very proud and does not like attention) and said ‘are they clapping because I have AML’? Lucas is very aware of what’s going on and tells people that he’s going to get this done in round 3 so that Dylan can be with him for round 4. I just hold my breathe when he says this and hug my glow in the dark rosary beads and say ‘yes please God let this be’.
A wonderful family whom we had never met before welcomed us into their home last week and took such great care of the 3 of us. Tom and Monica we will forever remember all that you did for us. Tom even flew Lucas and I to Philly on Sunday afternoon with his partner/friend Sean when it became clear that we needed to be at CHOP while Brian drove. CHOP’s ranked #1 and is world class. We know this is where we need to be.
A special thanks to Shelly, JennA, Kathy, Betsy, Shannon, Laurel & Dudley, Carter & Lizzie, Karen, Allison and our parents who took over the plans to get us out of the Houston. Our parents took Dylan and Jack back to Austin.
Thank you to Mike Hull, Auntie Annie and all who participated in the healing ceremonies for Lucas Thursday-Sunday night. You all are angels. We believe in the power of spirit and have such gratitude for your selfless commitment to healing Lucas.
Thank you to so many of you for helping us navigate Philly housing, etc. Melissa and Mark-wow, you’ve been amazing having worked at CHOP and knowing the city.
Everyones generosity has renewed our faith in mankind. The world is crazy right now and having complete strangers alongside friends and family from around the world help us makes me so emotional. I won’t lie this is very difficult. Someone told me who had a child with AML this was going to be a marathon when he was diagnosed July 31st. I’ve run 2 in my life but this is beyond. Digging deep is an understatement but it’s what we have to do. We will stop at nothing to save Lucas. His spirit is so alive we will believe that somehow someway this will all be okay in the end because he has such fight in him. The past few weeks he’s played football, parcheesi I think a hundred times with us, danced around, watched the SNL skit ‘more cowbells’ with Will Farrell and laughed hysterically a dozen times with Brian, and anxiously awaits for Jack to finish school so he can play Minecraft with him online. He’s been feeling okay and asymptomatic but the reality is he hasn’t responded to chemo so round 3 needs to start asap. Yesterday, he underwent an intense 6 hour MRI of the brain and spine followed by an LP and Bone Marrow biopsy (he threw the football with me all the way down the hall to the room and got on the table and said ‘okay I’m ready’-only this kid). His spinal fluids were high during the procedures which is always alarming to us because of the status epileptic seizure a month ago. He was sick last night and today is extremely sore from the procedures. He say’s he’s a ‘2 out of 10’ on the pain scale. To most of us it would be an 8 out of 10. Today the Philly team of doctors meet regarding his diagnosis. We go in tomorrow at 8am to hear the next protocol.
As hard as it is not to have our family together right now, this is how it needs to be because Lucas needs us all in.
A couple sweet Lucas stories- when driving to the hospital we saw an older man in a wheelchair sitting in the rain begging for money. I got my wallet and said ‘I’m going to give him a couple bucks’. Lucas pipes in ‘Mommy, give him $20’. I paused thinking well that’s a lot. I said ‘why $20?’. He said ‘because you have it’. Brian and I looked at each other and said ‘you are absolutely right I do have it-yes and this will make his day a better one’. What insight and understanding this child has at such a young age. At the hospital, Lucas and I watched as newborn babies rolled by with bags of IV’s and transfusions in their cribs. A six month old checked in next to us getting ready for her chemo. In radiology this adorable 3 year old girl rolled by with no legs as she waited for her X-Ray. Children were everywhere undergoing serious treatment. It’s so eye opening to us and Lucas pays attention. He doesn’t ask many questions, he just looks with empathy at the other kids and almost nods to them. Three months ago I wasn’t thinking about these children or anyone really suffering. Our biggest worry was catching Covid. We have this new reality and perspective to be grateful and present for every moment of every day. As my Grammy used to say ‘if you have your health you have everything’.
We appreciate your prayers and support. Tomorrow we are going to know a lot more about where we are and what the plan is. We pray that the Doctors identify THE treatment in round 3 to remove the cancer from his central nervous system, bones, marrow and every cell in his body to bring his counts to zero. We pray his organs and spirit are protected. We pray that we can get him into remission to move forward with the transplant. Please God let this time work.
