sebkel

These past few months have been a nightmare, dealing with another cancer diagnosis in the family, watching my little brother fight to stay alive while loosing so much.
          	
          	It’s another September of our lives that we’ve spent fighting childhood cancer.
          	
          	We’ve stepped down of making medical decisions for Maze as my dad has decided he would do it moving forward, I’m angry because I’ve fought and pushed to keep him alive since the pain in his leg started…
          	
          	But I’m also selfishly relieved.
          	
          	We’re not going anywhere, we’re not going back to Andorra as long as Maze is fighting, we’ve still have a long road to go. We’re just not making treatment decisions anymore.

sebkel

These past few months have been a nightmare, dealing with another cancer diagnosis in the family, watching my little brother fight to stay alive while loosing so much.
          
          It’s another September of our lives that we’ve spent fighting childhood cancer.
          
          We’ve stepped down of making medical decisions for Maze as my dad has decided he would do it moving forward, I’m angry because I’ve fought and pushed to keep him alive since the pain in his leg started…
          
          But I’m also selfishly relieved.
          
          We’re not going anywhere, we’re not going back to Andorra as long as Maze is fighting, we’ve still have a long road to go. We’re just not making treatment decisions anymore.

sebkel

Zee was scrolling around a list of “horrible baby names” and apparently little cee’s name was in it.
          
          He now regrets naming our baby Cosmo

sebkel

@-J3NNIE- these lists are brutal, Jennie is a wonderful name!
            
            Thank you, I loved it from the moment I found it, can’t believe it’s a “tragedeigh” name
• Reply

jenniewrites

don’t worry, i saw my name on a list of outdated baby girl names  cosmo is a beautiful name
• Reply

sebkel

Day 9 of childhood cancer awareness month, yesterday we started MEPACT immunotherapy.
          
          These last few days have been so strange for us and for Maze, he’s so angry at everyone and everything. He’s angry about his leg, chemo, his hair, his lost school year, having to stop living at boarding school, not having his friends here, Bengala getting to go back, spending days at hospital, scheduling physio, starting MEPACT and I could go on and on.
          
          I hate seeing him angry, we both do.
          
          Seb has spent most of these days with him in hospital as he receives chemo or immuno, or blood, or platelets or whatever he needs. I’ve spent most of the time with the kids, because you have to keep being a parent even when the whole world seems to be collapsing around you.
          
          Cosmo boy turns one next month, we hope we can give him some normalcy as he has been in and out of the hospital along with us and Maze, sometimes Cozy is the only one that can get a smile out of him. He loves being an uncle.

sebkel

3 times I’ve seen one of my siblings cry and beg to get better.
          
          2 are gone.
          
          One is fighting for his life.
          
          Not that long ago that was also me.
          
          I wish I could take this pain away from Maze, I wish I could’ve held Maddie and made her feel better, I wish Harriet would’ve lived a full life instead of getting that tumor that took her.
          
          Did you know that the treatment that Maze is on right now was developed for adult bodies more than 40 years ago? And that in those 40 years no new treatments for osteosarcoma have been approved?
          
          If MAP fails, we will continue with second line, that would be red devil. A chemo that can cause heart failure. It’s one of the only choices for osteo.
          
          We will keep fighting, but I hope this is the last time ever.

sebkel

September is Childhood Cancer Awareness Month, and for me, this month is more than just a ribbon or a campaign—it’s my life.
          
          I’ve survived leukemia four times in my 21 years. Each relapse came back more aggressive, more resistant, and demanded stronger treatments that poisoned not only the cancer but my own body. Survival has never meant walking away untouched, it meant scars, side effects, long hospital stays, and the constant fear of what might come next.
          
          Most of my siblings and I were born with Li-Fraumeni Syndrome (LFS), a hereditary condition that strips us of the cancer-fighting gene that most people have. Without it, our bodies are left vulnerable, prone to developing different kinds of cancers: leukemia and other blood cancers, soft tissue sarcomas, bone cancers like osteosarcoma, brain tumors, breast cancer—the list goes on. This mutation came from my mom, who herself survived brain cancer at just 16 years old. Our family has lived and breathed cancer for as long as I can remember.

sebkel

This is what childhood cancer looks like. It’s not rare. It’s not just a month or a color on a ribbon. It’s children missing from dinner tables, siblings holding each other through endless nights in hospital rooms, families learning to navigate grief and survival side by side. It’s years of treatments, side effects, scans, relapses, and hope—always hope, even when it feels impossible.
            Childhood cancer is not rare. And until the world treats it like the crisis it is—until research is funded, until cures are found—families like mine will keep losing, and children like Harriet, Maddie, and Maze will keep paying the price.
            It’s not gold. It’s blood, sweat, tears, and lives. And it demands more than awareness—it demands action.
• Reply

sebkel

We’ve known unthinkable losses. My younger sister Harriet was only a child when she was diagnosed with DIPG, an inoperable and incurable brain tumor. From the moment we heard those words, we knew what the outcome would be. She fought bravely for about seven months, but DIPG always takes, and it took her too soon.
            
            Then there was my sister Maddie. She wasn’t born with Li-Fraumeni—she was adopted into our family. At 9 years old, she was diagnosed with pleural mesothelioma, a cancer so rare that doctors were stunned to even see it in a child. She fought for years and eventually reached NED at 11. For a while, it felt like maybe she had beaten the odds. But when Maddie was 16, leukemia came, relentless and fast. She endured everything—trials, chemotherapy, transfusions—but her body couldn’t withstand it. Losing her was one of the cruelest twists of fate, because she wasn’t even genetically predisposed like the rest of us. What were the chances?
            
            Now my little brother Maze is in his own fight. He was diagnosed with osteosarcoma, an aggressive bone cancer. This summer, he underwent an amputation to remove the tumor in his leg. He’s recovering now, exhausted but determined, with months of chemo and therapy still ahead of him. He’s only a kid, and yet he’s been asked to carry the kind of weight no one should.
• Reply

sebkel

 I keep writing to get myself sane, pathology results showed 45% necrosis on the tumor, it’s not what we wanted, but it’s not horrible.
          
          There’s nothing else in his body, there’s no metastatic disease anywhere, so we will continue Chemo and Immuno for around 5 more months.
          
          Then, we will return to real life, we will hopefully leave this behind.
          
          He’s in good spirits, already discussing prosthetic with the team, terrorizing his twin. There’s pain, but he’s doing much better, he needed a break from the chemo.

sebkel

@-J3NNIE- thank you Jenny, happy late birthday once again! Welcome to your twenties.
• Reply

jenniewrites

i am so sorry for the heartbreak your family has gone through. i am here if you need anything
• Reply

sebkel

Life has been nothing but hectic.
          
          The twins turned 14 followed by Zee turning 21, it’s been two very different birthdays but we had a good time.
          
          We went out to celebrate Zee while my sister stayed with the kids, I’m grateful to have such an amazing husband and father to our kids, 15 year old me certainly knew he was the one.

sebkel

Surgery got moved, we can’t sleep.
          
          We’re going Insane, we thought we had another week of Maze with his two legs and now you’re telling me THIS was his last day?
          
          Let’s hope for clean margins, for high necrosis, for NED always.
          
          I asked Maze what he wanted from us and he said “just pray for me” because this is a kid who still had so much faith in a God, I’ll do so.

sebkel

We didn’t update because it was a busy day.
          
          There is no metastatic disease, Maze’s cancer is still localized.
          
          The tumor in his leg grew, this could be two things:
          
          1-It’s dying and has fluid around it.
          
          2-It’s chemo resistant and just not caring about the treatment.
          
          Our biggest concern is the necrosis on it, which we will know after the amputation.

sebkel

Scan day for Maze.
          
          Surgery in 2 weeks.
          
          15 years of One Direction (Zee made sure I included that one)
          
          He went in a couple of minutes ago, this will be it, no monster spread hopefully.
          
          After surgery he will be NED if his scans are clean, and then we will do more chemo based on his tumor pathology, hopefully the chemo will kick this thing in the ass and we don’t hear from it again.