My 3 favorite people

Lucas, Jack and Dylan Gourley, are easily the 3 most fabulous people in my world. They are resilient. They are loving and they are real. They have endured more challenging situations the past 3 years than most grownups endure in their lifetime.

Lucas, is getting off his chemo drug called Gilteritinib for the first time since around November of 2021 tomorrow. Today is the last day. This drug, along with the protocol that the doctors at Childrens Hospital of Philadelphia prescribed him and I believe the power of prayer has carried him thus far.

I will. We will. We will never forget the power of prayer. We will, never forget the power of the people that were behind us during Lucas journey.

My son Jack gave me a book over Christmas and it was about new beginnings. One of the passages said

“God did not calm the storm, He calmed the sailor. “

I don’t know much in this life, but I know that that is true. I know that there were times when the darkness was surrounding us during Lucas’ treatment. During the trips to 4 different hospitals. During the long nights of countless beeping machines that never stopped dripping into his broviac line in his heart. During the countless times he has cold washcloths on his head and entire body to try to dissapate the fevers. During the times that the only contact with Jack and Dylan were via Facetime in the hospital.

Then there were the times we were together. Thanksgiving, Christmas, playing basketball in the Philly snow and ice. Tearing around Fitler Square in the Yellow Kia. Being lifted up by prayers and emails that came in via the prayer wall. Accepting the generosity of people around the world who provided flights, prayers, food, gift cards, lodging, and emotional and financial support to our sweet family.

We need you all to pray tonight. Tonight Lucas gets off a pill he has taken for several years. We need your prayers, we need you to never forget.

Tonight we pray, God, we pray for Lucas. We pray that Dylans cells , her sweet bone marrow stays in his body and keeps cancer away forever God. We pray that Lucas can play with his siblings this summer and be a normal boy, and that Jack can have his family here, loving him supporting him. We pray that Lucas can go see his sisters gymnastics and laugh when she does backbends on the sofa. We pray for more cartwheels. More swimming. Vacations, Summers, love, sweet love.

Thank you God for watching over Lucas. Thank you for Dylan and Jack.

Please keep your healing powers and guide us through this life and keep Lucas forever cancer free.

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.  

2 Year Anniversary

Two years ago , today

On Feb 11. 2021, Lucas Patrick Gourley received a donation from his precious sister Dylan. His big brother, Jack had just visited in Philadelphia for Christmas and had to be in Austin during the transplant. He was admitted 10 days before, they called it T-10. He had cranial, total body radiation and a protocol of preparatory chemotherapy that totally removed his immune system. Dylan was a 14 out of 14 match. She had her cells harvested from Dr. Freedman at the Childrens Hospital of Philadelphia while Lucas waited in his room, the special section for bone marrow transplants.

This picture, below was taken after she came out of General Anesthesia. The doctors had to run a lot of heart tests on Dylan to make sure she could be sedated to donate the marrow. There were times that it was not 100% that she could do it so had to carry a Holter System around to monitor her heart and have it analyzed by the top doctors in the world.

Lucas also had the top doctors in the world. A whole team of them. A whole team we will be eternally grateful for. But most of all, Lucas had prayer, he had God in the room with him on that day. That day, when they brought in Dylans cells, while Jack was at home 1800 miles away with his grandparents, Dylan bravely donated her cells to her big bro. The middle child. The bringer of light. Lucas.

Lucas always and forever needs your prayers. He needs our prayers and this was sent out to day to bring light and hope and some joy and some more prayers for his continued healing, health. Thank you so much God, sweet Jesus, we are children of God and we prayed, collectively for Lucas.

The pics below encapsulate the present. The black and white is him climbing up a wall, looking for the next point, the next challenge, the determination in his eye we have seen so many times. The picture of him and Jack is after a WAYA game last week when he made the game winning 3 pointer. HIs brother, Jack was so proud of him, they really pull hard for eachother. The panoramic was on a trip to Enchanted Rock where Lucas was the first one to the top.

Thank you God, thank you Jesus, thank you prayer warriors. Please let Lucas 2 year tests, all the things that are continually on the radar for him be clear, clean and no cancer, now and forever more. We pray for Lucas today, we pray for his brother and sister and his family.

Amen

Weighing in at 59.2 pounds, from Austin, Texas

Weighing in at 59 pounds, from Austin TX

I remember in winter of ‘21 when Lucas’ weight plummeted to the high 30s from the high 40s. The doctors were concerned that he was going to have to have what is called a “G-tube” put into his stomach to feed him. This terrified me, this terrified Erin. He had already been through so much, so much pain, so much chemo, so much invasiveness in his body. Lucas’ medical records were over 3,000 pages at that point. To technically lose 20%+ of your body weight in such a short period of time when you were already skinny was a kick in the teeth and a sign of malnutrition. For a while it felt like nothing we fed him was working, post transplant, and many times before Dylan shared her amazing cells with him.

These were hard times. God carried us through those times. We tried to move forward, one step at a time. We became Whole Foods junkies, we went there , literally all the time. We focused on calories, getting a supplement called Benecalorie, which you can use to beef up simple meals without messing with the taste. We used the LoseIT app, and jokingly called it the GainIT app to track his intake. If Lucas could eat 1200 calories a day, we were good, we just had to figure out how to split it up, where to include the multiple medications he was on so that it did not overload his stomach and cause nausea and vomiting. He was on SO MANY meds it was hard to keep track of, we even have a chart which to this day is stuck to the fridge to track what meds he had and when.

Yesterday, August 18th

Lucas weighed in at DCMC yesterday at 59. He is going for 60. We go to Julios in Hyde Park on Neurological visit days, and yesterday he was blocking me from eating the chips. Lucas loves the chips and salsa at Julios. The woman who runs the place loves him and always smiles when we come in. “No school today?” she asked. I think about all the times people have asked that question when we are doing PT, out running errands or up at the pool.

We got some great news from the Neurology team. 689 days after he had a status-epilepticus seizure, they think it’s safe to start weaning him off of Kepra, the anti-seizure medicine. They said that his eyes look healthy, normal, and his reflexes are vastly improved from when we first got back from Philly in June of last year. Lucas was goofing around big time at the doctor yesterday, really cute.

We remember everything, we remember it all. To say we are grateful is an understatement.

School

Lucas went back to school after spring break last year, he had missed 1st and second grade. The team at Casis, and his teacher Jessica Garcia were amazing to our family. No stone was left unturned when he went back. Erin and I would go up to check on him during recess, we were crazy about making sure he had everything he needed and always minutes away if he needed to come home. Lucas did not need to come home much, he didn’t want to, he just wanted to be a normal boy.

Before he went back to school, when he was tested in February for his reading “MAP” test, he scored at an 8. You need to be at a 28 to be proficient enough for your age cohort to be promoted to 3rd grade. When Lucas applied to his new school, Trinity, it was at the 2nd grade level. The 8 score was given to him by their team, and it was pretty clear to everyone that he needed to repeat second. Until this summer.

Ms. Garcia told us that she thought he was ready for 3rd, but he had applied to second. We got copies of his MAP testing, and he had tested at a 28!! Lucas is going to the 3rd grade, starting next week. Going from an 8 to a 28 is an amazing achievement, and shows the power of his will to learn, but also the incredible power of teamwork and amazing teachers! Ms. Garcia made it fun to learn. In an era of challenging education, she stepped up to the plate and we are forever grateful.

Prayers

Lucas is still on genetic mutation inhibitor called Gilteritinib, likely for another 6-12 months. We pray that this drug inhibits the FLT3 Genetic mutation from returning to his precious body, coupled with the efficacy of the protocol he has already had. We are grateful for his sister Dylans bone marrow, and we are grateful for our medical team. Thank you for Lucas’ response to the meds, and please continue to hold him in your hands God.

We thank you for Lucas’ ability to learn, to grow, to be in the 3rd grade at the same school as his big brother, Jack.

Please God keep Lucas neurological functioning optimal, let him learn like he deserves to learn, please let his body, mind and spirit thrive in the face of the radiation that he had to have on his brain and body. Please let his body grow, let him stay on the growth track that he is gratefully on, and let him stay forever cancer free.

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. 

May this child live and thrive, we pray in thanks and gratitude, love and light to all .

1 Year Results are Clear

Praise God. Lucas 1-year results are clear. Lucas wanted to run the Rocky steps with his whole family and on a cold and windy day we ran to the top before we came back home to Austin. Philly was so good to us, its a part of our lives, and we are so grateful to the team @CHOP.

The next steps and prayers are for continued progress, Lucas should be cleared soon to play baseball, and even go back to school. We are also researching endocrinologists to make sure his growth plates are monitored and keeping a strong eye on him at all times.

Thank you for your prayers, God is good. Today is a good day.

God bless,

Team Lucas

Prayers from Sunny Philadelphia

Greetings from University City, Philadelphia, PA

1 year post transplant.

Good morning Team Lucas. The crew is here, it’s 19 degrees outside.  We are back with our Philly family at AKA in University City, looking at the snow on the roofs, watching the steam rise from the buildings and the early morning big orange sun running through the shades. 

The 1 year biopsy

Lucas starts his 1-year follow ups this morning at 10:45 at CHOP. Tomorrow he will have a bone marrow biopsy, lumbar puncture and undergo general anesthesia for what feels like the 100th time. For parents every time feels the same you don’t get used to it, for Lucas , the warrior it’s just routine. 

This is a big deal on so many levels.

1. Jack. Just thinking about a year ago where he was, where our family was.  Jack had to stay down in Austin, so we wanted to make sure and include him in this experience, this event. He spent most of COVID with his grandparents, most of the year not knowing if his brother was going to make it through, with his parents 1700 miles away.  Other kids his age were playing together, Jack had to stay quarantined even when COVID relaxed a little bit because Lucas is immunocompromised. 

2. Dylan, gets to see how her big bro Lucas does it , once again .  Once again she gets to watch him come home from a procedure where he had a spinal tap and bone marrow taken out of his lower back/hip/tailbone area.  She has to “be quiet” when Lucas gets home from his procedure, once again.  Once again they will cuddle and watch a movie together on the couch.  Once again we will gently play and be careful when he takes his shower that night.  Once again we will all cuddle in bed together.

3. Lucas.  There are other kids now that are on Gilteritinib. He was the youngest kid to ever take this FLT3 inhibitor when it was first allowed and now other kids are taking it.  Lucas, made gingerbread cookies for his nurses that he hasn’t seen since June 2021.  Lucas can’t wait to let his big bro see what CHOP is like, he has heard so much about it.  Lucas woke us up this morning, “The sun is orange.”  We laid there and watched it rise. 

He that may learn to pray, let him go to sea

-George Herbert (1593 - 1633)

Prayers tonight 8:30 EST 

• We pray God for Lucas’ results to be clear of all leukemia in his bone marrow, peripheral blood and is cerebral spinal fluid

•  God we pray for 100% engraftment of Dylan’s cells, and a negative FLT3 result.

• We pray for the practitioners to have a great procedure with no complications.

• We pray for our family to have a week , close together, celebrating a year since transplant

• . We pray with all of our might for clean and clear results and for Lucas to go thru childhood, adulthood and grow old with healthy cells. May leukemia, cancer and all disease never come to our sweet angel again. May he live to be the survivor he is in mind, body, heart and soul.

We Believe

We believe and won’t stop our prayers for Lucas being forever cured and healed. It’s been a road this past year and Lucas has been a warrior. He’s been for the most part isolated, no school, no playdates except for two. He’s not once complained and is the epitome of a person relishing in the present. He enjoys and is so grateful for any and all experiences whether that be playing golf with his grandparents, playing tennis, going for walks, playing pickle ball with his brother, and just being at home.

Thank You

All of the prayer warriors. We are so appreciative to Corporate Angel Networks for flying us to Philly, truly an amazing organization.  Companies giving back to families affected by cancer.

Thank you Blood Donors !!

Thank you everyone for coming !! Yesterday was a great success, we had over 40 people show up to donate blood to honor children battling pediatric cancer and our warrior Lucas.

Great job Tarrytown United Methodist Church , American Red Cross and most of all Erin Moore Gourley for organizing this event.

Thinking about the fact that this blood saves lives, and all the potential lives it could affect was very touching. I had some of the best conversations that I have had with people in a long time.

Touching stories, vulnerability, many first time donors. So proud of you guys. That blood you gave could really save a life.

Our family thanks you. The Hemoglobin and Platelets that would come in when Lucas blood supply was running low or platelets were low made him feel so much better and literally were / are life-saving.

Finally, we thank God, the ultimate healer for giving us Lucas’ little sister, the ultimate donor who gave her bone marrow to Lucas. Blood saved his life.

Good News + Consensus

Hi, Brian here, just wanted to update everyone that our concerns regarding Lucas MRI have been double confirmed to be clear by the CHOP and the Dell Children’s Team. Lucas CSF was clear of leukemia, but there were still some uncertain comments that we needed to understand, and now we do.

It’s complicated to get consensus from Neuro Radiologists / Neurologists / Oncologists / Transplant Team who then have to translate everything into English for me and Erin because everyone has different ways they take images, different patient populations that they see. For example, Dell sees a wide variety of patients but CHOP sees more of a concentration of bone marrow transplant populations, so the experience is different. They use different contrasts, different levels of machines, there are many many choices to make and when it comes to the brain you really have to be careful. Combine this with the holidays, Omicron and the medical records across institutions and it adds layers to the cake of stress that we have experienced over the past month.

Special thanks to Dr. Shannon Cohn, and Dr. Steven Roach @dell for quarterbacking the situation in Austin and making sure we left no stone unturned.

I can say without a doubt that prayers carried us through this , so thank you so much for those prayers.

Happy New Year from Team Lucas!

Lucas -Today's Update

Thank you ALL for praying so hard for our Lucas Bear. Here’s what we know. His LP shows clear spinal fluid=no leukemia. Thank you God. Thank you Jesus. Thank you everyone in the whole wide world and above who prays for and brings light and energy to Lucas.

We, also, know from the head of Dells neurology team that, in his opinion, while there is still inflammation and white mass on his brain and very high spinal fluid pressure (still confusing to all-it caps at 35 and he was 35 going in to take the fluid out), he does not believe there is infection, bleeding or leukemia. He felt the MRI was similar to the MRI in May which was worse than the one last January. Similar but not worse. That’s good if it’s not worse. We are definitely NOT running any victory laps because we are waiting for CHOPs neurology team to assess the images. They in coordination with the Dells team now (good news) will make the final conclusion. But, it’s one step in the right direction on the neurology front. Still unanswered questions, but hopefully we will hear from CHOP tomorrow. And we are believing it will be good news….we are going to stay in the light.

We have been stressed but praying so hard. The thought of the ‘L’ word knocked the wind out of us.
We sprang it on Lucas that he was getting the MRI and LP just the other day. Nonchalantly, saying ‘oh yeah, you have to get an MRI (and under our breathe-and an LP)’. This kid is smart and we didn’t want to scare him.
This morning he asked ‘why am I getting an MRI the day after my birthday and right before Christmas?’. Answer-‘because that’s the only day they could schedule it’. I answered quickly and moved on to another topic. He knew why.

When we got to the hospital, we have a tradition, Brian tries to make Lucas laugh before going under anesthesia (Lucas hates going under and it takes it out of us watching him each time-hasn’t gotten easier despite how many times). He acts like a different doctor each time to crack him up. I, on the other hand, find a corner tuck my head between my knees and pray the rosary. Today a nurse came up to me and asked if she should get the chaplain. I looked at her strangely and said ’no thanks, this is what I do every time’. We all have our ways I guess.

Here’s the video. Lucas’s laugh is infectious always has been.

Praying for good news from CHOP.

Prayers Today Dec23rd- 11 am CDT

Good morning - reminder that Lucas has a brain MRI, a lumbar puncture (spinal tap) to take fluid and blood labs. today at 11 am.

Prayers for the following

• First God we pray that Lucas body and brain and spinal fluid are clear of all leukemia, infection and bleeding.

• We pray that his imaging is clear and that his spinal fluid is clear as well as his labs look good and healthy.

• Safe and accurate procedure.

• Lucas brain MRI / Imaging is clear of any problems and clearly understood by both neuro-radiology teams at Dell Childrens and at Childrens Hospital of Philadelphia.

• There are no snafus or snags with collaboration and sharing his medical records, imaging and discussions between institutions.

• We pray for his siblings as they yet again wait patiently at home while their bro goes to the hospital to have a procedure done.

Last night was Lucas birthday celebration, and did we celebrate. We went to the observatory at Reimers Ranch outside of Austin. They had only 1 night when I called them over a month ago where we could have the place to ourself in December. It was Dec 22nd, Lucas birthday. On the way out there “Lean On Me” came on the radio as we watched a beautiful orange sunset. The Orange Sky. Served as a reminder of times past that God showed us his light. Jack said it was the most amazing sunset he had ever seen. I swear you could see the whole sky out at Reimers, it was like we were out in Big Bend or something like that.

“Dad, thats Bill Withers” Lucas said. He started to like Bill Withers when we were in Philly. “Play that guy again” he would say as we tore around Fitler Square in our Yellow KIA that got more parking tickets than a 23 year old driver would get in San Francisco.

Dylan led the crew, she kept everyone in line in the back seat.

The star guide taught us about Jupiter, the moon that orbits it called Europa, with the underwater ocean. He showed us the 7 sisters, what the Japanese call “Subaru” , taught us about the hidden clusters of stars, we looked through powerful telescopes with all of Lucas cousins present last night, and our whole family was together. “Cupcakes !!!” there was a mad frenzy of cupcake eating, stargazing and learning about this amazing universe that God created.

I walked outside, up the little pathway and looked up at the stars alone. I breathed in and prayed. Prayed for a good day today, for a life well lived, for Lucas body and cells to be clear of cancer. It was a thin place, much like the one outside of Nashville home of Johnny Cash. But this one was different. I could hear the children playing, the love in that area, the smell of the cedar, this was a thin place close to home. Looking at the vastness of this universe, in awe of it all. In awe of God’s power.

More MRI Uncertainty + Prayers

Foreword by Brian Gourley

Operating on all cylinders, once again. Getting the teams coordinated at CHOP and Dell Childrens to make sure no balls are dropped, nothing is missed. I look at my children in awe at their fighting spirit. I just want us to get through this year, get to the 1-year biopsy, but this MRI has really thrown us a curveball (to put it lightly). It took 3 weeks too long to get results, eventually we had the imaging that was taken here, sent to CHOP to “double check” because the neurologist we were working with took 3 weeks to get us the results, and then they have potentially missed some key stuff. It should have taken 24-48 hours. The MRI was Nov 29th, and we didn’t get meaningful insight until December 17th.

Doctors, if you are reading this, Excellence Matters. Listening to parents needs matters. Telling them “you got it” when it then takes 3 weeks to get results that should have taken 2 days is unacceptable, especially when we have uncertainty like we do right now. “I don’t know “ is not an answer, “I don’t know but I will research and find out” is an answer. “I’ve never heard of that drug” is not an answer, “that is a new drug that I am unfamiliar with, but I will research it and make sure I am up to date” is an answer. I have no patience or tolerance for alligator arms when it comes to my children, nor should anyone reading this blog post. I have no tolerance for lack of detail. I have no tolerance for “this is not my department.” Finally I have no tolerance for having to hunt down a FedEx number to find my child’s imaging which had been sent, not overnighted like we requested, and not sent with urgency, nor do I for having to follow up to make sure it was uploaded and shared with the transplant team.

I am a man of God, and I am unable to accept ambivalence from people that work in this profession. If you are ambivalent about kids who have battled cancer maybe there is another profession you should consider.

Erin Gourley , Dec 19th 2021

We received some unexpected news yesterday. This email below was sent to us followed by calls with the CHOP and Dells teams regarding Lucas’s MRI from November 29th. Lucas will be going under on Thursday, December 23 at 9:30am for a repeat MRI and a Lumbar Puncture.

Hi all,

I reviewed the scans at length with neuroradiology. I’m going to summarize the findings here and will also call Brian and Erin to discuss, since the second read is complicated.

1. They agree that the white matter changes have progressed and are most consistent with methotrexate/treatment toxicity. I agree with Dr. Cohn that MTX toxicity absolutely can progress on scans, and the neuroradiologist also agreed with this. Without any clinical changes, I would not change his gilteritinib based on this scan result and what we know about gilt.

2. The ventricles are back to the pre-pseudotumor size (good news) and they don’t see any papilledema (also good)

3. They did observe a finding that was not described by the Dell radiologists; however, the caveat is that the technique is different than the protocols that CHOP uses, so they can’t say whether this is a real finding or an artifact. The finding is that there is leptomeningeal enhancement of the sulci in the R temporoparietal region. If this is real, this could be consistent with infection, bleeding, or leukemia.

Since they cannot say with certainty based on these images whether this is an artifact or something to be concerned about, I would recommend repeating the MRI and following it with a lumbar puncture. If the images are the same or better and the LP is negative, then that would be reassuring that this was just artifact.

As you can imagine, we were jolted yesterday and are trying so hard to stay in the light. Lucas has been playing this song for the past few weeks-‘clap your hands if you believe’ and he claps and claps. We believe and are praying with all of our might that his MRI images are better Thursday and this is an artifact that has resolved and nothing more. I’ve definitely said more novenas than I’ve ever said and have been down on my knees praying to God that Thursday we get good news and there is no leukemia anywhere in his body and no infection, bleeding or leukemia in his brain. Please Lord let this be nothing more than an unconcerning artifact that has resolved.

We so graciously would love for you to help join forces and pray so hard for Lucas.

* May Lucas’s lumbar puncture be negative. May there be no leukemia anywhere in his body.

* May Lucas’s brain MRI show no infection, blood or leukemia.

* Please may this enhancement in the right region of his brain be nothing and the images show improvement.

* Gentleness and peace for Lucas’s procedure on Thursday. Please in the name of Jesus may this child be healed and cured of all cancer, leukemia and disease. May it never come back to him so he can live a healthy full life.

Iron sharpens iron - video

Hello everyone. I wanted to share a video about Lucas doing his PT but this is also an impassioned post to ask for prayers for the health of his brain and his teeth.

The methotrexate caused toxicity and he is among the youngest kids on an inhibitor called Gilteritinib in the world for the FLT3 Mutation. We have been waiting on imaging (that somehow got lost in the vortex) from previous MRIs, before we posted a blog about his MRI. We need prayers and we need people to focus on staying in the light, that Lucas brain does not have permanent toxicity that becomes challenging for him in his life. We are waiting, there were images taken at CHOP and Dell and MD Anderson, all likely on different machines. We need more answers , right now there are still more questions than answers. People have been asking “what happened with the MRI” and we thought we would know by now, but unfortunately we don’t. Neurology is puzzling for me, always has been. I have yet to feel strong about that portion of medicine, it has left me (and I believe Erin) with a lot of questions. The prayers, to be more specific are for toxicity to subside, for his brain to be resolving the drugs that were put in him to kill the cancer. The drugs that did not work by the way. The drugs that did work, in terms of putting him into MRD negative (remission) status were not toxic. Finding the right specialist helped with that. We almost made the wrong decision, and we are grateful for the 3rd round of chemo that was done at CHOP that put Lucas into remission, outpatient, with no toxicity.

There are also some good things. For one, his eyes are doing much better, the Edema calmed down and baselined thanks much in part to Dr. Edmond who is an amazing Neuro Ophthamologist at Dell Childrens, we are lucky to have her in Austin. Another positive, Lucas is eligible for his immunizations, we never saw this coming, but we will take it as my wife, Daughter of Mimi the cancer warrior, The Boston Fighter, Mamabear, so well put it on a blog post a while back.

Physical therapy is not written about much in transplant. Its really important. PT builds mindset, PT builds resilience, PT keeps the fighter mentality going. Iron sharpens iron.

Lucas MRI — Tomorrow AM

by Erin Gourley

MRI 9:30 CDT, Dell Childrens Hospital Austin, TX

Tomorrow Lucas has a 90 minute MRI. He will be sedated around 9:30am. They are trying to see if the inflammation in his brain has gone down since the last MRI in May. Wednesday, he will do his labs to check his counts and cells to see if his immune system is strengthening, and also have an EKG. We pray for his cells to be thriving with pure clean health and may his counts be strong and growing. Once he’s strong enough he can receive his ‘newborn’ immunizations but that be as far out as February but hopefully sooner. Also, we pray that he is still 100% engrafting (you never want that number to go down). The plan is to continue to keep our head down, fight on, as we countdown to the one year biopsy in February. The big one.

Recovery and Thanks

This holiday season we are reminded how fortunate and thankful we are to have Lucas here with us. Last year at this time, Jack and Dylan drove over 50 hours to spend just 3 days with Lucas in Philadelphia for Thanksgiving. We weren’t sure if round 3 had worked and were praying with all of our might around the clock. We are thankful to God for the miracle of getting him to 0.8% blasts from 70% cancer blasts a year ago on December 1st. We are thankful to Jesus, Blessed Mother and the Saints and angels above for their miracles and hearing our prayers. And we are forever grateful to all of you for holding Lucas close and praying for his survival. Lucas is here, he’s very much still in recovery but his light is shining stronger every day. Dylan has her feisty full of life spirit and keeps Lucas active. And Jack’s resilience is unmeasurable as he stands by his brother in the most protective way. Our family has changed but for the better as a result of this experience. We take absolutely nothing for granted and each day is a gift from God.

A Grandmother’s Love

Last week, I was able to visit my mom in Boston and was surprised of the news that she was diagnosed with stage 2 breast cancer in June (she didn’t want to burden us given the past 16 months). She underwent 2 surgeries and received chemo the past 3 months. I mentioned this on facebook but I’ll say it again. Her genes are very much in Lucas. They both are Rocky fighters and I believe she, too, will overcome the next 7 months of treatment. Sweet Lucas understands what she’s dealing with and has such a special love for his Mimi. A special thanks for the Lynnfield girls for rallying support AGAIN for our family.

While home, I was able to meet the most amazing group of 9 Carmelite Sisters in the monastery in Danvers, MA. Mrs. Korrins (my dear friends mom from growing up) shared with them Lucas’s battle 16 months ago. They have been faithfully praying for Lucas and I was honored to be able to meet them, talk to them about the journey and most importantly thank them. Mother Teresa was there along with the other 8 Sisters and their blessings for Lucas we are forever be grateful for. They truly are the most inspiring selfless people dedicating their lives in prayer for others. I believe that we will get to Boston as a family one of these days when Lucas isn’t immune compromised and they will be one of our first stops!

Blessings to all of you for your love, support, friendship, and continued prayers for our warrior. Lucas has come so far so onwards we go!

The path forward

Prayers are free. Prayers are invaluable. Prayers are priceless.

Prayers worked. Lucas’ tests all came back clear.

Prayers are the time that you can have a 1 on 1 conversation with God. You can talk to him and He will hear you if you speak the truth, from a place that is real. God knows, He knows what is in your heart and He hears you when your voice is true.

So many of your voices, your hearts have spoken to God about our Lucas. They have prayed, time and time again, and we humbly ask that you never forget. Let’s never take for granted the gift that is our children, your children.

Lucas’ 5 results came back clear

Focusing back. Looking back in time. There are key moments when we could feel the prayers shining up to us in Philly and now we can feel them radiating on Lucasbear Cir. The place many of you showed us your support in the welcome home parade months ago. We are still here, we are mostly quarantined but you might see us pop our heads up now and again. Like when Lucas does his PT at Westwood or plays tennis with Coach Dave or his brother. When you see Jack at a tennis clinic because he got pulled from school due to RSV, covid, etc. We just can’t risk too much. You might see me or Erin at the grocery store when we are able to get away from home schooling the focusing on our family.

We wear masks because we have to, the downside is not worth it. It’s not political for us. If you are around people who could potentially die from exposure because they are immunocompromised, either don’t hang out with them , or ask them if you can approach, or wear a mask.

Adopt the WE mentality. We all need one another, you are not better than anyone else, it doesn’t matter who they voted for.

Cancer does not care who you voted for, its an omnipresent enemy. It takes a united force to defeat it.

The rebuilding

The mental health and physical aspects of a ‘return’ to normal are very hard for families that have been affected by cancer. Day by day, one foot forward at a time we are figuring it out. There are good days and bad days. There are days when Lucas is angry, there are times he is quiet, there are days he crushes the tennis ball and there are days he does not eat much. He is unfolding.

I looked at pictures of Lucas and our family before this happened the other day, and it was so surreal. To think what we have been through. Its almost like there is a different family I am looking at now. A different level of maturity, perspective, consciousness.

Everyones heart grew many sizes, sometimes we wear them on our sleeves, but we can also build walls up that protect us from getting hurt again. Especially sweet Lucas. So vulnerable yet so tough at the same time.

Philly in February ‘22

We will be there. Lucas had the option to choose where he wanted his 1-year biopsy to be taken and in around half a second said he wanted to have it done at CHOP. It will be special to go back to the place we spent countless hours, countless tears, countless amount of conversations, debates, analysis, prayers. It is very fitting that he wants to get his 1-year post transplant results from CHOP, and we are happy to make that happen.

Please keep Lucas in your prayers. Please pray for his immunity counts to stay strong. Pray for him to remain cancer free. Pray for his eyes, his soul, his heart.

100% Dylan

Just heard back from the famous Anne @CHOP. I did not expect this to hit me so hard, but its just a miracle, thats all. I was eating on the patio @maudies (mexican food) place for a late breakfast / early lunch and there was one other table of people. When I got this email I started running around the patio and talking to these complete stranger about Lucas.

Me, as they looked down at their enchiladas “And the cells were from his 4 year old sister at the time, and they are 100% engrafted now."

I am 100% sure they thought I was crazy, and I am 100% sure that I am. But its the best crazy. Good crazy.

3 pictures below: 1) the email from Anne 2) Lucas and Dylan today (October 4th) and 3) the picture from CHOP February 11th in the BMT wing. the day Dylan had her cells harvested, the picture is Lucas looking down on Dylan in the lobby from his window, she was unable to visit us due to Covid protocol

Prayers matter, we are waiting for 1 more result, the mutation FLT3.

Lucas Update - 2 results pending

We are not running victory laps, but we are shedding tears and praising God. 2 tests left to pray for, but this is VERY welcome news 8 months after our guy got his transplant with Dylans cells.

Prayers - Biopsy 10AM

Good morning - about to head to the hospital for Lucas 8 month biopsy please hold him in your thoughts and prayers.

We pray for Lucas to have a clean biopsy with zero residual disease, Zero FLT Mutation, Clean Spinal Fluid and no side effects from the procedure. We pray for the skill and guidance for Dr. Cohn @Dell Childrens. We thank you for her care. Thank you God for your guidance and peace with our care team, family , siblings and friends.

Amazing Re-Schedule of Biopsy

I won’t make this long, but Lucas’ biopsy got changed to this coming Tuesday 9/28.

For those of you that remember from last year, 9/28 was the day that Lucas was in the ICU at MD Anderson. He had a seizure that day, I was holding him and I thought we had lost him. Dr. Mejia came in and saved his life, got him breathing again, and he spent the next few days in the ICU with amazing doctors. We relocated Lucas shortly thereafter to Philly.

The oncology team chose to reschedule Lucas for Tuesday, 9/28. Erin came down today with massive tears in her eyes.

No coincidences.

We still need your prayers, please keep them coming.

1 year ago : https://www.lucasbear.org/blog-1/lucas-in-the-icu

Lucas grew an inch the past 2 months and we have been practicing tennis every day. God keeps giving us signals along the way, he will never forget. We will never forget.

8 Month Biopsy

This Friday 9/24:

Lucas has his 8-month biopsy September 24th at 8am.

This biopsy will test the same 5 things as in July and the end of May

1) Bone marrow for MRD mininally residual disease
2) spinal fluid
3) FLT 3 genetic mutation
4) and his engraftment of Dylan’s cells.

What this means, whats next:

These tests are important, Acute Myeloid Leukemia in the first year post transplant needs to constantly be monitored. Many people have asked how Lucas is doing, and he is doing great, but when we have to have these biopsies it brings back a lot of emotional trauma for our family. He has to have bone marrow taken out of his lower back / hip area for the 12th time in the past year, and he has to have a lumbar puncture. So it’s a nerve-wracking general-anesthesia procedure, that, to be honest most families would probably talk about for the rest of their lives, but this is his way of life.

We have to do this. We still need your prayers and support.

The samples be analyzed in Austin, and then sent up to CHOP (Philadelphia) as well as Washington to the most sophisticated lab in the world.

We would greatly appreciate your energy and prayers for Lucas to get positive results showing no cancer, leukemia or any disease in his body. 

Prayers - 8 pm EST this Thursday, September 23rd

The past month for Lucas and the family

It’s been a road and we’ve been working hard at ‘staying in the light’. Unfortunately, his little sister (his perfect genetic match) Dylan, was exposed to RSV in the first few days of Kindergarten. She got very sick and we had to move her out because Lucas immunity system is so compromised. RSV rampaged thru our house. Lucas caught it, and got pretty sick and it was scary because if he got a fever he would have had to be admitted.

Thank God he did not and he’s on the other side of it now.

Many people don’t know this but “pre transplant” they brought Lucas down to the brink-meaning, every immunization he’s ever had since birth was eradicated. He won’t receive immunizations until close to the one year mark post transplant.

Because of the risk, we decided to pull Jack and Dylan from school. So now everyone is homeschooling.  Jack 10, Dylan 5 and Lucas 7.

Food, Exercise and Mental Strength

Chemo from preparation for a bone marrow transplant wreaks havoc on your entire body. It crushes your appetite.

Lucas’ weight has been a challenge to keep up and he got down to 47 pounds. He struggles every day to eat, but we have started cooking more “Lucas Food” recently. He loves blueberry muffins and baked goods for breakfast. He is on 6 different meds still, and we keep a magnet whiteboard on the refrigerator to make sure we track everything.

Lucas resumed PT with Brian every morning, and is playing a decent amount of tennis. Westwood has some amazing coaches including Lucas’ favorite “Coach Dave” who has been one of our biggest advocates. Watching Lucas confidence regain, as he crushes a 2-handed backhand could bring tears to the most hardened military veteran.

PTSD reared it’s ugly head (common 6-12 months post transplant apparently), and we’re trying to keep his spirits up. Physical activity helps with this as does routine. He’s realizing all that he’s been thru and his limitations on not going to school, seeing friends, etc.

He wants so badly to be a normal kid. 

Lucas still has a road and fights the battle with his unyielding strength and courage. ‘Living on a Prayer’ came on last week when we were leaving his neurology appointment. We hadn’t heard that song since we were in the CHOP Starbucks pre transplant in January. Lucas pointed out that he’s come pretty far since the last time he heard that song. We’re all still living on a prayer and won’t stop praying for him. 

With heartfelt gratitude we thank you for praying for Lucas this Thursday night 8pm EST. We pray for a great biopsy, for a good week leading up to it, for our healthcare providers, and for his siblings. We pray for Lucas God, every night, every day.

We will never take for granted the fact that we are here, and that we have a loving community around us.