And as soon as she said that, I knew instantly, that’s what it was. I knew. One sentence out of someone’s mouth, your world is changed…and changed forever.
CHANGED FOREVER
It was just a regular old Tuesday for the world, but one that was life altering for Cooper’s family. Jen and Dustin had recently noticed some little red dots on Cooperâs face and unexplained bruising. It heightened their parenting intuition enough for a doctorâs visit.Â
On March 3, 2020 Dustin took Cooper to see their nurse practitioner with hopes of getting a simple diagnosis like low iron or something fixed by a vitamin. Both the nurse practitioner and pediatrician took a look and decided some further testing was needed. Cooper and Dustin went directly to the local ER.
Meanwhile Jen had been holding something in her heart, something she hadnât shared yet with anyone.
âSo about two weeks prior in February, I was in the shower one morning. I know this probably sounds a little crazy, but it’s part of our story. I audibly hear God when something big is going to happen in our lives. I was in the shower that morning and I heard Him say, âThere’s cancer in your house.â Never did I ever think that it was our kids. I naturally thought that it was going to be me. When the nurse practitioner called, she said âI don’t want to alarm you, but I also want you to be prepared. I can’t tell you much more but I believe your son has leukemia.â
And as soon as she said that, I knew instantly, that’s what it was. I knew.âÂ
Dustin was having his own unfolding of the truth about his son’s health. Â
âWhen the blood results came back, it was leukemia. It all happened so fast, the ambulance picked Coop up from the ER. Jen rode along with him to VCU, and I came home and packed us overnight bags. The next day he started his first chemo, then several days and a few tests later we got more news. When doctors walked in the door, you could just feel the heaviness, you know? It was AML, one of the most aggressive forms of cancer. Then we spent 45 days in the hospital, in the beginning of a pandemic.” Â
Jen remembered it so clearly, “One sentence out of someone’s mouth, your world is changed…and changed forever.”
The severity of cancer and the expected timing/need of treatment, and then coordination of the transplant after were all seriously complicated by the pandemic, it felt nearly impossible.Â
BONE MARROW MIRACLE
Cooperâs cancer required an aggressive treatment. The family knew immediately he would need a bone marrow transplant but they would have to get through a few rounds of chemo to be in remission first. The severity of cancer and the expected timing/need of treatment, and then coordination of the transplant after were all seriously complicated by the pandemic, it felt nearly impossible.
âThey told us it was a one in a million chance that you’re going to go straight to transplant, and I remember saying, well, we serve a one in a million God that specializes in that.”
After the first cycle, he was in remission, all clear, no cancer. They told us not to get our hopes up because we’re not going to be able to coordinate, find a donor, get a donation and get the cells here in time before he’s going to have to start another cycle. But that all did happen. He got his transplant on May 11. It really was a miracle.â Jen said.
âIt was kind of sparkly,â Coop said as he described what his bone marrow looked like. âIt felt kinda weird going in⊠and thatâs a note my donor gave me.â
This picture were taken just after the Cooper and his family met and spent the weekend with Cooperâs bone marrow miracle donor, Ann.
Here I had two kids in children’s hospitals 3,000 miles apart, during a global pandemic. That’s why I say it’s almost comical. Like you can’t make this up.
3,000 MILES APART
Because Cooperâs whole cancer journey started right at the beginning of the pandemic, it meant that only one parent could be with him at a time. Jen and Dustin only saw each other in the lobby every two to three days to pass the car keys off to each other. They did this for almost 4.5 months.
The exhaustion was very real and it became clear that they needed more support to care for their four-year-old daughter, Liv. They were grateful that Jenâs parents were able to take Liv home with them in California for a bit. While the the family was waiting for Coopâs bone marrow engraftment, Jen got a call that Liv was having some abdominal pain. One ER trip later and it was discovered Livâs appendix had ruptured and she was going septic and fast.
âHere I had two kids in children’s hospitals 3,000 miles apart, during a global pandemic. That’s why I say it’s almost comical. Like you can’t make this up. They didnât have a pediatric surgeon at that hospital because of the pandemic so they ended up taking her by ambulance to a children’s hospital in Sacramento.â Jen recalled.Â
âThe doctor called me, Jen was already in the air on the way. I gave her parental consent over the phone to do the surgery and Liv was out before Jen even landed.â Dustin said.Â
âShe hadnât woken up yet, I just wanted to be there when she woke up. I wanted her to see me.â Being so far apart was hard on Coop and Liv. They missed each other something terrible during that time. âThey were always close but now they are even closer. Ever since we came home, theyâve slept in the same bed together every night.â
WHAT MUST BE DONE
Dustin and Jen got the incredible news that Cooperâs transplant was engrafting and things were headed in the right direction, but it didnât last long. Coop soon got a bladder infection and kidney stones, and another virus after that. Â
Jen remembered the hardest days. âIt was kidney stones, but I mean, he was just scream bloody murder for hours, hours on end. And I think people don’t know, there’s no way of communicating how bad it was in that hospital room. There’s no words for what we saw. I mean, there were multiple times where he would say, âI just want to go to heaven. I just want to go to heaven.ââ
âAnd it’s like, how do you explain it to them? I promise you, this is going to help. This is helping you. I know it’s so hard for you to understand that, but you don’t, you can’t, you know, Iâm so sorry buddy. During those days I would tell him âCooper, I’m not going to sit here and watch you die. You have to do this.â Whatever has to happen, whatever I have to do, I’m going to make him do what he has to do.
But then I would go in the car and sit and cry.â Dustin said.Â
PRAYER AND THE BEEP POLE
Things continued to get worse for Cooper. It felt like the darkest time they had faced yet.Â
âI remember it was getting really bad, really bad. It just seemed like he had kind of given up his fight. He wasn’t laughing, smiling, we couldnât get him to eat. Like our Cooper wasnât in there, even though he was physically there.â Jen said.
The decision was made to move Cooper to the ICU, because he required so much care. Jen and Liv were still in California and it was clear the family needed to be held in a new way. Their community showed up as they had so many times before.
Quite a bit of our staff from our church where we both work came to pray. They all were under the ICU, lifting their hands, in the street right below. It was incredible.
“A couple days later my dad was able to be in the ICU with Coop since Jen was gone. So my dad is a big cut up, funny, does magic tricks, a very musical guy. We had named Cooper’s pole âBeepâ because it was always beeping, there were 22 machines and pumps going in him. So my dad was singing to the beeps and then all of a sudden the beeping stopped and dad kept singing. They both looked at each other and laughed. Just that little thing made him laugh. And it was like he came back to us.â Dustin said.
Things werenât exactly easy after that, Cooper went through a virus but slowly things started getting a little better each day. Coop got his fight back.Â
âI don’t know how you do it without faith, you know, when you’re so close to death like that. I think that’s the thing that held us together. Of course, you know, we had so many people lifting us up and praying over us and so much wonderful support too.”
“I swear every time, every time we needed to refill a tank, there’d be a gas card or something we needed in that backpack. Connorâs Heroes was really there for us. It just was constant. Weâre so grateful.â said Jen.
Cooper’s cancer journey is not over.
And for the next child diagnosed with cancer, it is just beginning.
As we recognize Childhood Cancer Awareness Month, make your donation so a family will never face their childâs cancer alone. You can make sure the next hero family receives financial assistance when they need it the most, and emotional support through every personal note, email, phone call, and visit. As the world looks for hope, guidance, and support, our childhood cancer families donât have to look far. Hope, guidance, and support are the pillars of Connorâs Heroes mission.
About the authors:
Kristin Seward
Kristin is a portrait photographer and photojournalist whose passion is finding and telling stories of hope within the community. She became involved with Connor’s Heroes after spending time with Katie Tyson and her family. Katie and Jim’s son, Callen, was diagnosed with leukemia. Over the course of two years, Kristin documented several other Connor’s Heroes hero families â both during and after treatment â for the “Heroes of RVA” and “RVA Cures” campaigns. She is honored to be able to do this project with her dear friend and fellow Compassion Photographer, Patience Salgado.
Patience Salgado
Patience Salgado is a Compassion Photographer who has had the honor of serving and photographing families in the passages of both birth and pediatric hospice for the last 12 years. The Salgado family found themselves on their own medical journey when their son Jamie was diagnosed with thyroid cancer in the summer of 2019. Walking this path together has solidified her heart belief that there is beauty in the dark and power in the light. Her hope is to see and honor each part of your story and reflect all the beautiful humanity it holds.