September is Childhood Cancer Awareness Month. Each day a different guest blogger will be featured who will generously share their personal experience with childhood cancer. Stories are always more potent than statistics.
By Mystee Sudbury
Just before I sat down to write this story about my brave girl, I went out to the mailbox and was met with the harsh reality that often meets me there. Our reality is that our American Dream is teetering on a fault line, ready to drop into the abyss with the slightest shake of the Earth.
It all started in June of 2007, when our spunky five year old daughter, Kaidan, was lying in a bed in the Emergency Department at our local children’s hospital. That night, she was a shell of the girl she had been. She was almost lifeless, deteriorating before our eyes. We found out later that night (after the doctor tried to send us home with a prescription for fluids, rest, and reassurance for mom) that she had a dangerously high white blood cell count, most likely caused by cancer. She was immediately admitted to the PICU and spent two weeks there fighting for her life. Days later it was determined that she had a high risk form of acute leukemia (T-cell ALL).
Our lives were turned upside down in an instant and the next three years were spent in and out of the hospital in a daily battle to save our daughter’s life. We tried to maintain some normalcy for our other children, and quickly realized that cancer was a whole lot more than just a disease. Kaidan experienced many side effects during treatment and when she completed the protocol for her cancer in November 2009 we were elated; blissfully thinking that we had paid our dues and this chapter in our life was closed. Boy, were we wrong.
Here we are, nearly five years later, and cancer is still a daily topic in our home. Now, rather than fighting to save our daughter from cancer, we are trying to save her and our family from the aftermath. Much like a tornado, cancer leaves a wake of destruction that is visible long after it’s gone. The only problem is, it’s not really evident to outsiders. Even close friends and family often believe that once you finish treatment it’s all over. They happily exclaim how good she looks….every time they see her. They tell me to be more positive and to stop worrying so much. I learned really quickly that most people do not understand. Really, how can they?
So, back to the mailbox. Today I was met with a stack of bills for a five day hospital stay Kaidan had in July. Yep, you read that right – almost five years off treatment and she just recently came home from nearly a week in the hospital. It was awful – one of the more difficult hospital experiences I can remember. She was struck with a bout of unbearable pain late one Saturday night that sent us to the Emergency Department. After several hours and no answers, the doctor attempted to send us home…again. It was very déjà vu – you know, it took me right back to June 25, 2007. Same hospital, same vibrant girl, similar pain that was sucking the life right out of her. The faces that came in and out of the room were different, but they were saying the same words – trying to reassure me and send us on our way. But, just like in June 2007, I refused to take my girl home. I knew that Kaidan was not herself and something was seriously wrong. Unfortunately, I was right….again.
Within hours of being admitted, Kaidan was bleeding internally. Losing more and more blood with every bowel movement. After five days of specialists, tests, procedures, medicines, more specialists, and more tests, we still had no answers. So, we were sent home with a non-diagnosis that we have heard before: We don’t know why this happened, but we don’t see any signs of cancer. Most likely this is a late side effect from the treatment she received. It should get better, after your try A, B, and C. We’ll follow up in a couple months unless it seems to get worse. Yada, yada, yada.
Situations similar to this scenario have happened to us too many times to count. Kaidan seems to have one major medical setback after another. We count on at least one per year. This year, by the end of July, she has already had two. Each of these events comes at a hefty price for our family – emotionally, physically, and financially.
Emotionally and physically, our family is spent. This last hospital stay was rough. Kaidan’s sister is old enough that she understands the seriousness of it all. She worries too much for a 14 year old. She’s wise beyond her years and shows more compassion than some adults. She forgets how to have fun because she has a complete understanding of how fragile life is. I hate cancer for that – robbing the innocence of my kids. We’ve been on this roller coaster for over seven years, and we are tired.
The financial burden that is placed on a family during a time of medical crisis is unfathomable. I wouldn’t wish it on anyone. In addition to co-pays, deductibles, and out of pocket maximums, you are suddenly eating out, sometimes three meals a day. You have added travel expenses, driving to and from the hospital to home and back again. You miss time at work or possibly you lose an entire income. Even a five day hospital stay can sink a family that is living paycheck to paycheck.
We live in a world with amazing people. Times of duress bring out the best and people often jump at the chance to make a difference. Soon though, everyone goes back to their own lives and forget that yours is stuck in quicksand. Financial aid is very prevalent at first, but once you ring that bell, showing you have killed the beast, the world thinks you are done and that everything is now back to normal. It’s easy to see why people would think that the medical bills stop and your life will resume right where it left off, but that is often not the reality.
Childhood cancer research is grossly underfunded and our children are treated with the same chemotherapies used decades ago. The only difference is the cocktails and dosages that we give them. The side effects are harsh, often leaving our kids with secondary cancers or chronic conditions that will plague them for life. Kaidan could be the poster child for this sad truth.
I worry endlessly about our girl. She is a brave, amazing soul. You will almost NEVER see her without a huge smile on her face. But, she fights a daily battle against cancer, even though she’s long been declared the victor. I fear that one day she will get tired of fighting, be it physically or mentally. But here we are, nearly to the five year mark where Kaidan and our entire family will celebrate that she is officially CURED! But please don’t be fooled. Please remember families like us. Families that have won the battle, but are still fighting the war. We are still fragile – in so many ways.
**********
I was so grateful to receive Mystee’s post, as she highlights the financial toll and ruin so many childhood cancer families are left with after treatment. It is not uncommon to lose jobs, houses, or insurance in the middle of treatment. The Affordable Care Act works to ensure coverage for the survivors of childhood cancer, but there are so many other costs associated with treatment. If you need help finding resources, check out THIS PAGE from the American Childhood Cancer Organization.
Mary Tyler Mom 