There is a reason CellCycle is written in pink on our homepage. My sister-in-law, Kate, is kind enough to share their daughter, Etta's, story in this guest blog. Etta's story is one of several we will be sharing over the coming weeks to raise awareness for cancer patients. It is also the story that launched this charity effort. And it is the reason CellCycle is written in pink on our homepage.
How our life changed irreversibly on December 23, 2015, A story also known as Leukemia.
December 22, I was driving to book club with my friend Faith, anticipating our holiday gift exchange, when I got the call from our six-year old daughter’s pediatrician’s office. Our daughter, Frank’s niece Etta, had been in earlier that day. This was her second visit in a couple weeks, after a string of low-grade fevers, stomach aches, anxiety, all of which had been explained away by everyone as “that time of year.” That is, until one of these fevers spiked and Rawls and I knew something more was going on. I was thinking (hoping?) that “something more“ could be cured with a few days of antibiotics. No. The voice over the phone said, “possibly leukemia” and we were instructed to head to the ER where they were expecting us, and we should plan on staying a couple of days.
The next hours and days are a blur. The two things I remember most clearly being told were that our life was never going to be the same and that they planned to cure her. They started chemo that night. Lying in the hospital daybed that night, holding onto Rawls, both of us silently sobbing, in shock, we began to let it all sink in. The official diagnosis came the next day, although perhaps only for our sake, to give us some more time to accept it as true: Pre B-cell Acute Lymphoblastic Leukemia (ALL).
After studying the all-about-leukemia binder and being quizzed by the doctors about what we needed to do to care for Etta (e.g., go to the ER within an hour any time she has a fever of 100.4 or higher), she was discharged on Christmas Eve. She began throwing up in the car on the way home, or maybe just before. As I said, it’s a blur. What I do remember is how miserable she was, and how overwhelmed I was. We were home maybe two hours before returning to the ER with a fever. She spent about two weeks inpatient. They tried so hard to make Christmas in the hospital a good experience, but how could it be, at least so soon after diagnosis?
At the end of the first month of treatment, we learned Etta was technically in remission, which is the goal in that first month. We also learned that due to the cytogenetics of her leukemia, she is at a high risk for relapse, and as a result would be treated on the “Very High Risk” protocol. It was difficult to explain why we were so heartbroken, after just learning she was in remission.
Etta, along with about 2% of other leukemia patients, has what is known in the medical world as iAmp21, which increases her risk of relapse. Thanks to research, this marker was identified several years ago so that now they can more aggressively treat those with it in an effort to reduce the potential for relapse. On the downside, this means more and stronger chemo, which also means a greater risk of short- and long-term side effects. Etta, like many children being treated for leukemia, is involved in a study, which we hope will result in more information about how to best treat others in her situation to further reduce the risk of relapse, and to minimize the side effects of treatment.
To administer all that chemo in the lowest-risk way possible, near the end of her first month of treatment, Etta had surgery for a port to be placed in her chest. Each time she receives chemo, this port is accessed by inserting a needle which connects to the tubes through which the chemo is delivered. While we put numbing cream on her chest before the needle is inserted, this doesn’t remove the pain entirely, and the process continues to be an emotional stress for Etta. As Rawls described so well:
"One of the biggest stressors so far is when Etta’s port is accessed or removed. There is a physical pain associated with it but the loss of control seems to loom even larger. During these times Etta’s feelings come out. “I wish this was just a bad dream.” I’m so scared and I just want to go home.” Why is this happening?” Kate and I can’t completely protect our children, we can only stand with them and try to block as many blows as life delivers them. Most of the times we can’t hit life back because we are too busy holding their hands."
Speaking of these emotions, this is one of the hardest parts to witness as a parent. I’ve grown accustomed, but far from numb, to hearing Etta say “I hate my life.” And then, in addition to port accesses and chemo, one of the therapies used to treat leukemia is steroids. As if the mood swings of a typical six-year old were not enough, try adding steroids to the mix. Enough said.
It is now six months since Etta’s diagnosis. Her port has been accessed countless times, she has had three bone marrow samples taken, been sedated multiple times for chemo injections into her spine, has completed several rounds of chemo, spent over 30 days in the hospital (apart from her 3-year old sister, one of her parents, and her dog), lost all of her hair once (and is about to lose the returning fuzz again), missed several months of first grade, and we have all shed too many tears. Etta’s treatment will continue for two years, during which time we will continue to worry about potentially life threatening infections.
But, it is not all such a challenge. Etta, and the other children fighting cancer up at Doernbecher, all find reasons to smile, and laugh, and sing and dance. People we don’t even know have helped us along the way, expecting nothing in return. Our families, and our circle of friends, have provided us the strength we need to get through the hardest days. And we have hope. What was only a short time ago incurable can now be treated, thanks to the efforts of determined doctors, and funding from groups like the Leukemia and Lymphoma Society. That said, there are no guarantees. While Etta will hopefully be cured for good, she still faces another two years of chemo, and we will live in fear of relapse for at least the next five years, and continue to lose sleep over all of the other short- and long-term side effects of chemo, including secondary cancer, for the remainder of Etta’s hopefully long life.
Let’s find a way to give these children more. Please consider contributing to the Leukemia & Lymphoma Society through CellCycle, so that one day these fears will be a thing of the past.