In January 2011, our healthy, active, intelligent 7-year-old daughter, McKenna, came down with what we thought to be a stomach virus. After a week of doctor visits, seeing her left eye begin to stray and her mouth begin to droop, we insisted on having a CT scan. Childhood cancer was never even a consideration in our minds before that scan, but less than 24 hours and one MRI later, we found ourselves surrounded by doctors at the nurses’ station in the PICU waiting to hear the diagnosis.
It was in the midst of that chaos that we were told our daughter had diffuse intrinsic pontine glioma, or DIPG, an extremely rare pediatric brain tumor that typically strikes between the ages of 5 and 7, infiltrates the brain stem, and has a 0% survival rate.
Doctors explained that we would have 9 to 18 months with McKenna and to take her home and make the most of the time.
I immediately went in to “mama bear mode,” doing everything I could to protect my daughter from the reality of what was happening to her. Meanwhile, my husband and some amazing friends went to work searching out the most respected DIPG specialists around the world.
What we found crushed us.
Though astronaut Neil Armstrong lost his young daughter, Karen, to DIPG in 1962, protocols for treatment and life expectancy had not changed since that time. Radiation could potentially reduce symptoms for a few months, but no treatment or clinical trial had proven to have any significant effect on life expectancy for these children.
If you are a parent, I am sure you can imagine the pain of hearing that not only is there no cure available for your child’s illness, but there is absolutely no hope that she will survive long enough to find one.Now imagine the guilt you experience when you look into her expectant face as she waits to hear you tell her everything will be OK.
Our promise to her, at that point, was that we would do everything within our power to make her “feel” better during her illness, all the while hoping that there would be some miracle discovery that could give us more time — time in which a real cure might be found.
Those hopes were dashed when we lost our precious girl on July 21st, 2011 — two weeks shy of her eighth birthday and exactly six months from her diagnosis.
The days before McKenna’s passing were heartbreaking and traumatic. Our focus was on making our daughter feel comfortable and loved, to the exclusion of all else. Because of that, we will forever be grateful to our good friend, and McKenna’s second mom, Lisa, who was brave enough to research tumor donation in the weeks preceeding our daughter’s death.
In helping us search for a viable clinical trial, Lisa had developed a relationship with Dr. Michelle Monje of Stanford University, who was accepting tumor donations for study. Lisa arranged to have the paperwork ready should we choose to donate McKenna’s tumor.
It was something that I could not bear to consider beforehand, as I felt it was a betrayal to concentrate on anything but her life while McKenna was with us. However, knowing that scarcity of tumor tissue was one of the reasons for lack of progress in the study of DIPG, as McKenna was taking her final breaths both my husband and I agreed to the donation.
We really didn’t know what would become of the tumor donation at the time. We just knew that the mechanisms of this disease were still a mystery, and that we would do anything we could to save the next child and family from the pain we were experiencing.
In the months following McKenna’s death, we learned that a cell line had been developed from her tumor. In one of our first acts as a foundation, we made sure that her cell line, and others, were made available without charge to researchers around the world for study. It was our way of honoring McKenna’s courageous battle by doing whatever we could to fight this evil monster of a disease.
We were fortunate. Our friend knew us well enough to judge what our reaction would be when asked whether we would want to donate. Tumor donation is not an easy topic to broach with parents and loved ones. Because time is of the essence in the viability of the donation, arrangements have to be made in advance of a child’s passing. However, parents are trying to hold on to Hope, and donation is a subject not many want to talk about while their child is still fighting for their lives. I know I couldn’t.
But it is an important topic to bring forward. Working with children and families through our foundation in the years since McKenna’s loss, I am now often the one who must try feel out parents’ wishes, or help other family members or friends do the same. It is not easy.
I have learned never to underestimate the strength of parents in this situation. There are times I judged wrongly whether I thought it would be the parents’ wishes to donate, and have had those families tell me they wish I would have stepped forward and said more. I will forever regret those mistakes, but because of them I have learned that it is better to give parents an option, even if doing so is painful.
I will never forget going to the lab and seeing McKenna’s cell line under the microscope for the first time. Holding the petri dish in my hands, I sobbed. Grief, anger, regret, and guilt all churned to the surface. All I could think was what was left of my child was living in that dish, and it was the part that killed her. Part of me wanted to throw the dish against the wall, to destroy the beast that had destroyed my daughter. It would be so easy.
But another part of me was so proud. My girl was a fighter, and here she was, fighting still, for the children who would follow in her footsteps. Her little life meant more than I could ever imagine, and though we would do anything to have her back, knowing that her time here is making a difference brings us some modicum of peace.
What we have come to learn is that we were lucky in that regard. There is no guarantee that a cell line will be developed, and in fact most won’t. But it is important to note that something is learned from every donation. A new piece of the puzzle is found and fitted in to place.
And with every piece, the picture becomes more clear. Because of the increasing number of donations made by families in the last 7-8 years, we are seeing incredible breakthroughs in the understanding of DIPG for the first time ever. Researchers are beginning to speak of increased time and quality of life, words that were never uttered when our daughter was diagnosed. These children, whose tumors were donated, have produced a new source of light, shedding the first glimmers of Hope on this disease for those yet to be diagnosed. McKenna’s light still shines.
McKenna Claire Wetzel (left) and her big sister Jordan