Beautiful moments
by Erin Gourley
Getting the News
Brian called me around 5pm last night crying saying he talked to our NP Katie. I thought ‘oh no,’ until he told me the news, I started jumping and cheering around the room. I absolutely couldn’t believe it. After being told by many this might not be possible to get Lucas to transplant (we wouldn’t talk to them again), and/or how complicated and rare of a case this was, we are now overwhelmed with gratitude. This was divine intervention; a MIRACLE!!! Finally, we were an anomaly for something positive! Lucas sensed the joy and smiled. Lucas never fake smiles, this was a real happy smile, because Lucas knows what ‘zero cancer cells’ means.
Thank you God! We have more good news today! His spine is still clear!!
I don’t know that I’ve ever had such belief, gratitude and deep felt appreciation and love for God. Brian and I know in our hearts God heard our prayers. Today we have hope. Faith has kept us going, guided us with decision making and certainly kept us from falling off the rails the past 4 months.
Prayer warriors united
We thank all of you for bonding together with the love and healing connection for Lucas. You are his prayer warriors. Together through the power of soulful prayer, positive belief in spirit and deep commitment to healing, a miracle occurred. There were many times my mind would go to the dark side and I would quickly turn the beat around and pray.
Prayer might mean different things to each of you. For me I prayed to God, Jesus, Mother Mary, every family and friend I have ever known in Heaven, Archangels, and divine spirits and angels of the highest brightest lights. At different times, different people. At night I would pray to Lord Jesus for healing and meditate over Lucas and do Reiki (not trained just winging it). It felt like light flowing thru me many times as heat was pulled out. Sweet boy had no idea he’s covered in crystals, rosary beads, prayer balls and stones that many of you have sent me after he goes to sleep.
Navigation along this journey
My mom always says ‘if you don’t know what to do don’t do anything’. I’ve always been a believer in this philosophy. Waiting for the right care and digging very deep to listen to God’s guidance got us here. When we left MD Anderson, based on Lucas’ neurological complications, we knew we needed a dedicated pediatric hospital, and we rushed to Cincinnati. There was a lot of confusion as to what caused Lucas’s status epilepticus seizure. Was it the FLT 3 Gilternib drug? Was it the spinal chemos? He almost didn’t make it through that experience. After a week in Cincinnati, Brian and I really prayed for strong guidance and direction as to what to do because we felt strongly (intuitively) this was not where we were supposed to be. We were being reactive but we had time to be proactive. Had we rushed into the 3rd round of treatment there we wouldn’t have had as clear of answers as to the cause of brain toxicity. Signs came from everywhere and angels and spirits presented the path forward. Quite literally orange skies showed up along the journey to Philly as just one example.
Modeling abundance
We knew it was a risk delaying his 3rd round of chemo because the cancer was growing, but after pausing, we knew CHOP was where we needed to be. Our amazing doctor at CHOP took a thoughtful and patient approach thinking thru what would be best for Lucas specifically. The team identified that it was not Gilternib that caused the brain toxicity but it was more likely Methotrexate (spinal chemo). They opted for a completely different regimen of chemo drugs and included Gilternib again, thinking sometimes this takes a few rounds to work. This was not going to be included had we just jumped into treatment out of a fearful reaction. This also presented the chance to do the whole treatment outpatient, with less potential side effects (infection risk).
Beautiful moments
The daily healing positive energy on Lucas from all of you. Many encouraged us to visualize him strong, healthy and cured and to believe!
My cousin sent me Nana’s rosaries and her ring with her kids' birthstones (I always loved this ring). I haven’t taken them off. Nana’s with us. Thank you Debbie
Jack telling Brian that the thing he likes most about Lucas is ‘even though he has cancer he doesn’t act like he has cancer. He doesn’t want people to treat him differently. He just wants to be himself and he hasn’t changed’. We told Lucas this and he beamed.
I was driving Jack and Dylan back to Nashville Saturday, and the song ‘Sailing’ came on Michael Jackson radio. When Dylan was a baby the boys used to make forts around the fire and we would cuddle, then put on ‘Sailing’ and twirl around before bedtime. I had forgotten about these moments. I didn’t truly appreciate them at the time and all I could think about was how badly I want to do that again. When Cathy and Jack picked the kids up at the hotel Sunday morning, I went back in to get my bag. ‘Sailing’ was playing in the lobby again. I promised myself I will never take a moment with my kids for granted again.
Sunday night 8:30pm EST collective prayer moment for Lucas. Wow. The ceremonies, the Masses, the moments of silence around the world. I’m in awe of everyone’s kindness and generosity to give so much energy to our little boy. There is no doubt in my mind there was power and positive healing taking place on Lucas in that moment.
I woke up Monday morning from wherever I was in Virginia and there was a picture of an orange sky hanging on the wall. I pulled over at 10:17am to pray deeply for Lucas not knowing exactly when he was going in for his procedure. Brian called at that moment and said ‘he just went under’. I prayed hard to Jesus and God and visualized holding Lucas’s sweet bald head. I felt this calmness and peace over Lucas.
Yesterday, Lucas was admitted to the hospital for a fever of 101.6 (it’s since gone down but he’s staying in until tomorrow to make sure it’s not an infection). Mid afternoon, before we got the news I asked the nurse what unit we were in. We were in the bone marrow transplant unit and she said she and the team are the dedicated team for BMTs. We’ve never had a room in the BMT unit. Call me crazy, but I thought now that’s interesting….?! Lucas who picks up on everything thought it was interesting as well.
The road ahead
We need to keep the foot on the gas for sure. We will find out more later today, but from what we understand he will do one more round of the same regimen to keep the marrow and spine clean and clear of cancer blasts. Then, he goes right to transplant. Transplant involves another team and 75+ days to complete. They keep him on high lockdown because the risk of infection is so great. We’ll take it right. He’s going to transplant!!
Our prayers
For the bone marrow and spine to stay clear and clean of cancer -please keep the cancer eradicated from his body thru to transplant
For lower spinal fluid pressure in his brain. Something they are watching closely since we’ve had the neurology issue. The spinal pressure been high.
For no infections and/or fevers thru this process
Continued guidance of our medical team to ensure Lucas’s treatment is effective in curing his cancer
Full healing and being cured of cancer forever
