 |  |  |
|---|
About Us
With many new people following our journey and others that have had lingering questions, I felt like it was time to write how our battle began.
So bare with me. I’m going to start from the beginning and it took me several days to put these thoughts into words…
Chapter one. The signs.
We are the Martins. Me, Kristin, and my amazing husband of 15 years, Chris, have four awesome kiddos. Twins, Blake and Brady, Aubrey, and our new little guy, Cooper.
In early May 2021 we found our nine year old son Brady slowing during soccer.
He was running less and walking more.
We honestly chalked it up to his heart not being in it anymore when he said, “I just can’t keep up with the other kids. I think I want to play baseball.”
A couple weeks went by. Then his headaches set in.
He got off the bus crying a few times because they were so bad.
X-rays showed his neck didn’t have the proper curve. He was a kid that had had trouble with his neck in the past, so this wasn’t a huge surprise.
So we went for multiple appointments a week and that began to help.
Meanwhile, he complained of leg pain. Specifically his left side. If you’ve met Brady in person, then you realize he is much taller than average. In fact, at nine he is a hair under five foot tall. So, leg pain? Growing pains of course. I mean he is pretty much a monster already. So that checked off too.
But then there was fatigue.
I remember him helping me warm up at a softball game and he game over to me flustered and upset. “Mom,” he had said desperately, “why am I always so tired? I can’t even throw this ball anymore. I just need to sit.”
Hmmmmm.
A little over a week later the shortness of breath came in. It was bad. It was a Friday night and I remember him outside playing with Blake. He had to sit several times to catch his breath.
Blake had just gotten off of crutches after dislocating his kneecap.
Then, there is Brady. Tired, leg hurts, headache, and now trouble breathing.
I remember him coming over to sit next to me outside on the bench. His shoulders dramatically moving up and down as he tried to catch his breath. I remember doing something I wish I could take back. I remember looking at my mother-in-law and rolling my eyes.
I thought he was just trying to get attention. Blake had been very successful playing baseball and had just come off all the attention from being on crutches. I thought Brady was just trying to get noticed since he was the quiet guy.
That weekend passed and his symptoms did what they normally did, they went away.
Then Monday came. Monday I picked him up from a baseball camp. It was so hot. I remember the air feeling so heavy. So wet and heavy. Brady was sitting. The coach came over when I got there.
“Brady had a hard time keeping up. We modified the exercises but he sat out quite a bit.” Brady’s face was beat red and sweat was pouring down.
I looked at the coach, who I had just met for the first time that morning, “yeah, I’m not sure what is going on. He started this Friday, but I thought it was a fluke.”
I finally got him and Blake in the van and he cried the whole way home.
I immediately called his pediatrician. Enough was enough. Nothing made sense but something had to be wrong.
We got in that afternoon. He did a full physical checkup and was as perplexed as we were. Everything looked perfect. Lungs, heart, muscles, joints, everything.
I remember his doctor sitting back on his stool. He rested his back against the wall. “Everything checks out,” he continued, “maybe he is just really dehydrated. Let’s pump him with fluids for a couple days. If things don’t drastically improve I want to run labs on him.”
So we headed home with no real answers. Tuesday passed and he stayed home from baseball camp. Wednesday he didn’t feel up to going either.
By Wednesday evening I started to see a change in his coloring. I knew in my heart something was really wrong. God was already preparing me for what was to come. Right before bed I could tell his skin was yellowing and he had dark circles under his eyes.
He was eating a snack at the bar in our kitchen when I turned around to Chris and mouthed, “he looks terrible. I’m taking him to children’s tomorrow.” Chris quickly nodded in agreement.
Thursday came. Brady still looked terrible, but he was up moving around and looking forward to baseball practice that night. He was supposed to be filling in on Blake’s team that weekend and the two of them had been looking forward to playing together the whole week.
I remember telling Chris that I knew something was really wrong, but I also felt like it wasn’t going to change if he went to baseball. In fact, I thought his heart needed to do it. Chris wasn’t sure if it was a good idea, but Brady agreed that we would drive separate and go straight to the Children’s urgent care as soon as it was over to get the labs drawn.
I remember he hit the ball a few times and ran the bases twice during that practice. He sat several times and looked so fatigued and lethargic. I couldn’t watch anymore. Neither of us could. After about an hour we pulled him to the side. “Brady, it’s time to go buddy. We have to find out what’s going on.”
“I understand,” he said quietly. He was disappointed but at that point also knew something wasn’t right.
Once we got there we gave them the whole history of symptoms. They ran X-rays of multiple places and pulled his blood.
Brady was freezing even though it was blazing hot. He sat in the chair with my jacket on and the hood up. He finally got so tired he couldn’t sit anymore so I got him up on the bed to wait.
I knew what was coming.
I can’t explain it other than God had prepared my heart.
Chapter two. The battle begins.
The Children’s urgent care doctor came in and sat down. He was so kind but I remember he looked so troubled as he spoke, “X-rays are all clear. His blood work though. His white blood count is so high we can’t even read it.” He looked at me almost afraid to say it out loud, “all we can tell is that it has to be a leukemia or lymphoma. We have to get him to children’s downtown right away.”
So high they couldn’t read it.
There was a ball in my throat as I let out some tears. But like I said, I felt like I had already known and I wasn’t totally broken yet. That was coming later.
Just then, Chris walked in. We got him up to speed. The doctors left and we quietly cried as we held Brady in our arms. Then we packed him up and went home to grab a few things since it was on the way.
It was 9pm. Blake and Aubrey were still up waiting on us to get home. We brought Brady in to change out of the dirty baseball clothes he had been wearing. We told Chris’s parents the news we had at that point. Then we told Blake and Aubrey.
Everyone was shocked. Everyone was crying.
We gave giant hugs and wiped tears as we threw stuff into bags.
We drove downtown to children’s and they took us back immediately.
They put in three iv’s that night and pulled more labs. An oncology attending came in to tell us lab results. It was late, we were all exhausted. She said his WBC was “really high” and it was definitely leukemia, but they wouldn’t know more until morning. We talked more about what the next few days were going to look like but that is all a blur now.
They moved Brady to the 2nd floor ICU at Nationwide Children’s Hospital on June 10th, 2021.
The next morning we met a whole slew of doctors. We kept hearing how “high” Bradys WBC was but not being of a medical background we had no idea what any of the numbers meant. By 10am they were able to confirm Brady had High Risk Pre B Cell Acute Lymphoblastic Leukemia.
They planned to put in a port that morning and start chemo right away, but more labs confirmed that he was too unstable to endure the surgery. They, instead, had to put in a PICC line.
After his surgery he felt pretty good. He was silly and sweet and teasing his still-favorite nurse, Bree.
That night Brady started to decline though. I will never forget that night. I remember him crying so hard in excruciating pain that he couldn’t even make noise. The tears just streamed down his face while everyone scrambled to try to get his pain under control.
By morning, things got worse. Brady had declined to a point where they had to sedate him and put him on a bi-pap vent to help his body get the oxygen it needed. While they tried to control the pain from his “extremely high white blood count.”
All the while, God sent us the most incredible nurses. He knew exactly who we needed for a time like that. He sent us the most goofy, silly, kind and loving people to help us through those long days.
I remember sitting in Brady’s ICU room and FaceTiming one of my best friends. Behind me you could hear the constant pump and release of the vent as it pumped oxygen into his lungs while he slept. Tears were rolling down her cheeks as I gave her update of were we stood. I remember telling her, “this is going to be hard, but I know God will use it for the good. I know we can be a light in this place.”
I will never forget her words back to me that day. “Of course you would say that.” She smiled and wiped some tears shaking her head, “of course you guys would find away to make a mission out of this. I love you.”
We saw many victories those first few days. But there were still so many more to come.
Chapter three. Another level of hard.
Brady was released from the ICU five days after diagnosis. We moved to the 12th floor of NCH and every morning we spoke with the doctors during rounds.
We had learned more and more those first few days, but one thing stood out. Everyone kept talking about how high Brady’s White blood count was, but we honestly had no idea what that really meant.
Finally, on day seven we asked. “So we keep hearing how his WBC is extremely high. What does that mean? Like compared to what?”
They all looked around, there were about 10-12 doctors in total. “Well, high risk is around 300. Brady had a WBC of 606 when he was admitted. So he is at the very top.”
“Ok,” Chris said. Then he asked, “so what is the highest you have seen?”
They all began giving out the highest they had seen, which only one of them had seen a case higher than Brady’s. Finally, the oncology fellow said, “he is in the top 5-10 cases we have ever had here.”
We definitely weren’t expecting that.
The rest of the week was, I guess, pretty uneventful. There were many sleepless nights and rough patches, but it was definitely different than the ICU.
Finally on Friday, Brady was released, but it didn’t last long.
After three extremely hard days at home, Brady was readmitted.
Chapter four. The mountain got bigger.
We were a few days into Brady’s second admission when his oncologist came in.
It was late in the day when she said her hellos then took a seat on the couch. I knew then to prepare myself. In all of our previous visits she had never taken a seat until that moment.
She was there because the testing they had sent out had finally come back. The results showed Brady had an extremely rare mutation that was causing his leukemia to reproduce rapidly, which helped everyone to understand why his WBC was sky high. He basically “had a switch that had turned on that couldn’t turn off.”
This switch is classified as a “Philadelphia like” mutation. The word “like” is in there because it isn’t a Philadelphia mutation, but it is similar.
She then proceeded to explain to us just how rare his particular mutation is. Brady is only the 65th case documented in the world with this specific mutation.
She also told us that she had already been in contact with some of the leading researchers across the country to discuss Brady’s case and determine a course of action. Then, we talked numbers and outcomes and what the potential looked like.
Once she left I messaged some of my close friends and asked them to come to the hospital. Within a couple hours we were outside praying as I told them the news. And for the first time since his diagnosis, I broke.
I broke into pieces.
But I knew God was going to show us a miracle. That has always been firmly planted in our hearts.
The incredible story God was writing had to seem impossible to overcome.
And it does, feel impossible. One of 65 in the world. In the world.
That is just how God likes it.
We are ready, Lord. Ready to be amazed by your power, goodness, and glory.
We are armed with your strength and we are ready for the battle, broken pieces and all.
Shields up. Swords out.
Chapter five. Where we stand today.
There have been many incredible victories between then and now, but I’ve already written too much and I doubt many will read all of this. So feel free to scroll through the blog to see some of our stories of how we have been completely blessed in different ways throughout this battle and how we have been able to find joy in the midst of our pain.
Each story is deeply raw and very personal.
Our prayer has been, and will continue to be, that this battle and our journey somehow blesses or encourages someone else.
So where we stand today.
The future and timeline is still so unsure. It all hinges on Brady achieving remission.
What we do know is that Brady will need a bone marrow transplant to survive. His leukemia has been classified as “chemo resistant”. So they are working on getting him into remission to be able to proceed with the bone marrow transplant as soon as possible, without remission the likelihood the transplant is successful is slim.
If all goes according to plan, Brady will be admitted the day after Thanksgiving and be in the hospital through at least the end of the year, but again, it hinges on him being in remission after his biopsy in a couple weeks.
We also know that Brady will have to undergo radiation on his brain, nervous system, and testis in the week leading up to the transplant. Brady’s fraternal twin, Blake, is a 10 out of 10 match to be Brady’s donor. Blake is also deathly afraid of needles and Brady’s polar opposite. He desperately needs prayer to find the strength to overcome his fears to be able to do this.
We are to the point where I could almost write a book about the incredible battles we have been through already and the way we have faced each of them head on. Our kids are warriors. They also have incredible hearts to love those around them.
This journey, this battle, it has changed our lives forever. It has been a devastating miracle and God has used it to open our eyes on how to be a blessing to others in similar situations.
Through this, our hearts have birthed a new nonprofit, Way To Battle. Our dream and prayer is to bring love and hope to children, siblings, and families facing a challenging, life-changing circumstance.
So there it is. It is hard to take out and abbreviate some of the pivotal moments of this battle, but I did my best.
If you are still with me, here are a few specific prayers to say for us as we continue down this road:
- We are praying for remission
- We are praying for protection over Brady’s body through the radiation and transplant
- We are praying for a miracle to be witnessed when he is cancer free for the rest of his life with no effects from the radiation or treatment and is able to have a family
- We are praying over Blake. That he is full of bravery and courage and is fully protected by God to not only live a healthy life, but also be Brady’s life-saving donor
- We are praying over Aubrey and Cooper. That through this extremely hard season they never question the love we have for them. That they too, are fully protected from experiencing anything like this themselves.
- We are praying for our family unit to be so tightly connected that we are able to strengthen one another and hold one another up
- We are praying for our battle to be a blessing to others and for our nonprofit to inspire hope, love, and courage
- We are praying that every battle pup will flood the hearts of those who receive them so that they will be strengthened to endure whatever battle they are facing
- We are praying that our journey can bring awareness to how deeply effected the entire family is through a life-changing battle
- We are praying that this battle bring glory to God in every way. For His light to shine through us.
- We are praying for this battle to be one of the greatest miracles we have ever witnessed
Thank you friends for walking with us through the battlefield.
Shields up. Swords out.
We are ready for a miracle.
“You have armed with strength for the battle.” Psalm 18:39
#waytobattlebrady #battlelikebrady #bravelikeblake #awesomelikeaubrey #crazylikecooper #waytobattleMartins #leukemiawarrior #seekingremission #headingfortransplant #warriors #noonebattlesalone #choosejoy