Matthew's Story: The In-Between Place

September is Childhood Cancer Awareness Month. Each day I will feature a different guest blogger who will generously share their personal experience with childhood cancer.  Stories are always more potent than statistics.  The hope is that by learning about children with cancer, readers will be more invested in turning their awareness into action.  Read more about this series and childhood cancer HERE.

By Wendy Burr

Matthew has Leukemia.

I never thought I could be so matter of fact about something that awful and terrifying. My baby boy, at just 3 years old, has cancer.

What can I say? The first month is crazy scary! You know there's something wrong. Everyone knows there's something wrong. His grandparents, his siblings, his teachers. But every mother I've talked to says they went from doctor to doctor, and it always seems to take a month from the first weird symptoms to reach a diagnosis. You desperately want that, but you don't, because what if it's something awful? Like cancer?

This is an excerpt from the beginning of Matthew's cancer blog. After more than two years, I now understand that some parents find out much more suddenly and traumatically, but with leukemia, it can take some time. Matthew's first symptom was night terrors, lasting several months. An infection in his salivary gland then swelled to the size of two golf balls in under twelve hours, and all the lymph nodes in his neck were hard, like marbles.

Golf ball sized infection in Matthew's neck.

Golf ball sized infection in Matthew's neck.

After a month of doctors, antibiotics, weight loss, paleness, lethargy, fevers, and loss of appetite, those lumps, although smaller, would not go away. Finally, we took him to the ER at the children's hospital. A Complete Blood Count indicated a problem. They admitted him, and started testing for leukemia. Three days later, they diagnosed Acute Lymphoblastic Leukemia (ALL) with a prognosis of 85-92%. This is about as good as it gets. We are the lucky ones.

Although cancer is awful, for me, it was also sort of a relief. I desperately wanted someone to help him. I'd been watching him die, from a simple infection, and felt so helpless. It wasn't until weeks later that I fell apart. I'm still trying to put myself back together.

ALL treatment is long. For Matthew, about three and a half years. By the end, it will have been nearly half his life.

The first eight months included five intense phases of treatment. He lost his hair twice, experienced weight gain from steroids, weight loss from chemo, blood transfusions, and was mostly confined to our home due to low immunities. He had to stop preschool, but an amazing teacher came and taught him when he was well enough. She was his light in a dark place.

The remainder of treatment is a maintenance therapy. It's a weird in-between place. The goal is to suppress the bone marrow, to reset it, in hopes that it will stop making cancerous blood. They check white blood counts monthly to measure success. Levels are high enough that he's no longer home bound, but low enough that he's still immune compromised. He can catch anything. Cold and flu season is terrifying.

Got hope?  Every family of a child with cancer needs hope.

Got hope? Every family of a child with cancer needs hope.

Blood has a fast life cycle. So for ALL treatment, the first phase, called induction, is designed to kill all the cancer in 28 days. Matthew has been in remission since August 2011. All the illness he's experienced since then was a result of his treatment, not his cancer. We have a real love/hate relationship with chemo. Everything we do now teaches the bones to make healthy, cancer-free blood. To prevent relapse, because ALL relapse is notoriously hard to cure.

In the 70's, they stopped treatment after induction, and only 10% of patients survived because pretty much everyone relapsed. They'd kill the cancer in the blood, but the bones would just make more. ALL treatment has come a such a long way. Ten years ago, the survival rate was 50-70%. Today, it's 80-90% or better. This has all been accomplished with no new drugs, because the drug companies and the government do very little to research childhood cancer. That's why I feel so passionately about research. Matthew's excellent prognosis has come from decades of study (one tiny tweak to the protocol at a time), and unimaginable numbers of participating children. Their parents enrolled them in studies knowing it wouldn't help them, but hoping to improve treatment. What a gut-wrenchingly selfless thing to think about during your child's terminal illness.

My son is living, breathing proof that it worked. If you're one of those parents, reading this now, I want to say thank you, from the very depths of my soul, for hoping to make a difference for us. It worked. My son is a vibrant, vital reminder of that gift every day. Thank you. I can never thank you enough.

My life's trajectory has changed. I'm studying to be a nurse, with the ultimate goal of pediatric oncology. But research remains vital. ALL treatment still isn't perfect. If you look at the numbers, roughly 3 out of 20 kids don't make it. Those numbers used to comfort me, until I started watching my friends' children suffer and die. I've seen some good friends bury their bright and shining stars. It breaks me inside a little bit more each time, and then my resolve to act is heightened. It isn't right.

Because ALL is the most common childhood cancer, and has the best cure rate, it weighs down the numbers, making it seem like all childhood cancers have a good cure rate, and this is simply not true. If you look at them individually, sarcomas, neuroblastoma, brain cancers (and so many more) ... these cancers desperately need better treatment! Most have more like 50/50 odds, and some, like DIPG, have no chance of a cure. This is unacceptable. In a society where we claim our children come first, I cannot understand why the disease that kills more children than any other gets so little funding for research. If this ship were sinking, would we just let these little children drown? How come so few people are throwing out a life preserver?

To that end, I raise funds for research with a group of cancer moms in Utah. We walk for CureSearch because it has very little overhead, therefore a high percentage goes to actual research, sent on to Children's Oncology Group (COG), the uniting research organization for all of North America. Last year, our walk earned $170,000, 100% of which went straight to COG. For more information about this year's walk on October 5th, visit our website. If you'd like to walk with Matthew's team, physically or virtually, visit his individual page.

We still have another year to go. Another cold and flu season. Kindergarten. Relapse is the scariest word I know, and it's most likely to happen during this time. There's an 8-15% chance, and it would change everything. We put this at the back of our minds, and try to live in the now. Right now, he's relatively healthy. He's happy, smart, funny, witty, and so very empathetic. When this year is over, we'll take some baby steps back into real life. Someday, this will be in the rearview mirror, and Matthew will be a strong, contributing member of society. He'll never be the same, but in many ways, I believe he'll be better. Stronger, for what he has endured. More empathetic and kind. It has made him who he is.

ROAR, Matthew, ROAR.

ROAR, Matthew, ROAR.

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history, it becomes more beautiful."

~ Billie Mobayed

If you're looking for all of the posts in the  Childhood Cancer Stories: The September Series, you can find them catalogued HERE.  

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