I usually try to introduce a guest blog.. but this one.. well it introduces itself. All I can say is I love you Alia and I truly appreciate you.
I was fifteen years old, and I was annoyed. My little sister (J) wasn’t feeling well- again- and we were at a music competition I had been preparing for for months. I tend to get hyper focused on a task (whether that’s an admirable trait or a selfish one depends on the circumstances), and simply put, she was distracting me. And distracting my parents, whose attention I wanted to help with my nervousness. I didn’t have any idea that what was coming would be so much worse than any music judge’s criticism.
The next thing I remember is her going in to have a ton of tests, and then being diagnosed. Acute lymphocytic leukemia (ALL). I was surprised (kids weren’t supposed to get that sick, after all), but not all that concerned. Even in the late 1980s, survival rates for ALL were above 80%. It was, and still is, the most common pediatric cancer, the most studied, the one with the most treatments available. There was no doubt in my mind that she would be ok. I knew there’d be some chemo, maybe she’d lose her hair, but in a few weeks or months things would be back to normal, right?
Well. Not only did I have no idea how long and complex a chemotherapy protocol is, none of us had any idea about the caveats surrounding that survival rate percentage.
Did you know that the survival rate percentages measure only the percent of patients who do not die within 5 years of diagnosis? Kids who lose their battle at 5 years and one day after their diagnosis are counted as five-year survivors. I understand why (you do have to set standards for statistics), but it’s very misleading.
90% of modern ALL patients may survive for 5 years, but that doesn’t mean 90% live to a normal life expectancy.
Did you know that the relapse rate of ALL is up to 20%? And that the survival rate of relapsed patients can be as low as 20%?
Did you know that over 60% of the children who do survive to adulthood report having serious health issues, either as a result of the disease itself or of the treatments?
I didn’t. We didn’t. So my family dove into J’s treatment, and I had every confidence that things would be ok.
My family learned a lot over the next few weeks. The words prednisone, methotrexate, vincristine, marinol. That hair loss is far from being the only side effect of chemo. That children’s wings in hospitals try very hard to be cheery and welcoming for the kids and their families, but can feel very awkward for teens and tweens (not to mention depressing for adults). That friends and neighbors pull together amazingly when you need them. That people mean well, but you can be given too many stuffed animals.
J battled cancer for five years. Honestly, I don’t remember too many details, because at the time I was pretty absorbed in my own head. I was young and I was dealing with a lot: honors classes, a ton of extracurricular activities, a move overseas, college applications, and a series of unsuitable boyfriends. And then college across the country.
What I do remember: I remember how my mother started carrying around a huge binder with info about test results, the chemo protocol, how J reacted to treatments, etc. That binder was her constant companion for ages.
I remember being bored out of my mind a lot in hospital rooms. I did a lot of crocheting. J developed a love, or at least a tolerance, for The Price is Right and at least one soap opera (there wasn’t cable in many hospitals yet back then).
I remember rushing through a museum while my mother paid the admission, to get J to a restroom so she could vomit, and then all of us calmly viewing the exhibits once she was done. There’s a lot of vomiting with cancer.
I remember “prednisone face” and wig shopping, and suggesting that it was an opportunity to have some fun with various styles, to a 12-year-old who just wanted to look like herself again.
I remember staying in at least two different Ronald McDonald Houses on my college breaks with other frightened, exhausted families.
I remember doing a directed donation of platelets for her, and lying about my weight because I’d had mono and was below the minimum weight for a blood donation. I ended up with an overdose of the anticoagulant they use during the donation.
I remember graft-versus-host disease and an immune system so compromised that J’s teddy (a mascot and constant companion) had to be autoclaved before it could join her in her hospital room, which had a constant laminar air flow to prevent germs. It was loud and we had to wear scratchy gowns and shoe covers in that room.
I remember two relapses and two bone marrow transplants (one using J’s own cells, which had been treated to get rid of the leukemia first, and one using our sister M’s marrow).
I remember getting the call in my junior year of college that M and I needed to fly out to the hospital because J was dying.
And I remember what she looked like when we arrived, before the respirator was switched off and we let her go. I will not describe that. I would not wish the image on anyone.
I remember, but I don’t talk about it much. I don’t really care to, for a lot of reasons. If you know me in real life, I would ask you to please respect that as my own way of coping.
Just bear in mind that grief that is private can still be profound.
In college, I studied molecular and cell biology, determined to go to graduate school and become a cancer researcher. It’s not an easy major, and I had to concentrate on the here-and-now in order to get through the program. Graduate school was infinitely more demanding. I wasn’t even halfway through before I realized that academic research wasn’t for me. Determined to help with cancer research in some way anyway, I finished my PhD in microbiology and molecular genetics and went into industry.
It’s now 14 years since I graduated, and 21 years since J left us. In that time pediatric cancer has touched my life twice more.
(Did you know that young adults can develop pediatric cancer? I didn’t, until it happened to an acquaintance. The medical system, by the way, doesn’t really know how to handle adults with issues that are more common in children. That leads to some awkward moments at best and the potential of significant errors at worst.)
In 2005, I “met” Libby. The word is in quotation marks because we became friends on an Internet wedding-planning forum, and it was months after that before I actually saw her in real life. So I’ve followed her story through the long journey she and Tony went through to become parents, visited her in the hospital after two of her babies were born, and joined her family for play dates.
When Jennifer’s eye started turning in, I originally thought she had a lazy eye or another fixable, common pediatric eye problem. When I heard she was getting MRIs and the words “sixth nerve palsy”, I knew. I said nothing- to anyone- in case I was wrong, but I knew.
It’s a blessing and a curse having the family experience and the education that I have at a time like that. I’m more desensitized to children with bald heads, suppressed immune systems, fatigue and “prednisone face”. I already knew from personal experience that kids you love really can get very sick and die. I knew the generalities about how treatment works and the side effects and the upheaval it all creates in a family’s life. I have a good understanding of cancer biology. So there were several mental adjustments I didn’t have to make, and very little of the medical stuff confused me.
But I also had flashbacks. And I knew- really, truly understood- Jennifer’s prognosis immediately when she was diagnosed. Again, I didn’t discuss it. But knowing that an engaging, funny, original and smart little girl you’ve known since her birth has cells infiltrating her brain stem- cells that will multiply and take her away- is… hard. Even when you know it happens. Even when you’ve seen it happen.
Libby has written incredible blog posts about the short months that followed Jennifer’s diagnosis and the long months since her death. They’ve touched me as profoundly as I’m sure they’ve touched you. One thing that has struck me is the guilt Libby feels about not having realized how common and awful pediatric cancer really is. That she didn’t start the fight earlier.
I had known Libby for years before Jennifer was even born. I could have told her, but I didn’t. I never even thought to. I don’t fault myself for that. Starting something like Unravel is a feat I could never accomplish, and therefore it never crossed my mind that telling a friend that pediatric cancer is the number one disease killer of children could result in Big Things like Unravel happening.
Unravel needed Libby to get started. Pediatric cancer needs people like Libby. And Libby needs people to help, and fortunately for me (who was looking for some meaningful volunteer work), she needed someone to help evaluate and translate the science.
I am now the scientific advisor for Unravel, and I find it incredibly rewarding. I’m not doing paid work at the moment, but I’m still doing something to help cancer research. Pediatric cancer research, a field so small and underfunded that it wasn’t something I considered a viable career path back when I was planning a research career. I consider it a privilege and a way to honor both Jennifer and my sister, as well as the thousands of other children who succumb to cancer each year.
Because they deserve more than this.