She was diagnosed in February just after her 12th birthday. This type of leukemia has a high likelihood of recurrence even if remission is achieved. Megan was fortunate to achieve remission after a long series of chemotherapy treatments, blood transfusions, bone marrow biopsies and, ultimately an experimental "magic bullet" cocktail of chemotherapy that involved intensive in-home iv and oral chemotherapy in addition to her weekly chemo treatments in the clinic. We were so thrilled to hear that she achieved remission and that she could move onto the next phase of her treatment--a bone marrow transplant. Again, Megan was fortunate that her 9 year old brother, Noah, was a perfect match and so he has stepped up as the hero of this story by donating the life-saving bone marrow for his sister. Megan is 9 days post-transplant right now. We are all anxiously awaiting news that the transplant was successful and that she will accept Noah's marrow and begin generating her own white blood cells. She is in an immense amount of pain as she struggles through mouth sores that prevent her from eating (but do not prevent the hunger pains). This will be Megan's life as she continues through this struggle, and things will continue to be difficult in the months and even years to come. All of this will present financial challenges to Megan's family--her father and my brother, Tom and his wife, Tara, and her mother, Linda.
Being away from my family--living in Lincoln and not right there in Des Moines where all this started and where it will continue once Megan returns from the University of Minnesota, has been heartbreaking for me. I hate that I had to watch my brother struggle through his daughter's cancer diagnosis and treatment from a distance. Those times where he would just drive and park and cry because he was so overwhelmed and he didn't know where to go with all of his emotion as he tried to be strong for his kids. I hated that I couldn't be there every day to give Megan a hug, or share a snarky story with her. I hated that I couldn't sit down with Noah and offer him encouragement when I knew how scared he was to undergo this procedure. Getting a sliver is a big enough deal, but donating bone marrow?!? I hated that I couldn't be more present for the struggle they were all going through. Families are, of course, more and more geographically spread out and this experience is not unique to me--but it is new to me. There's always things you hate to miss when you don't live close to family, but offering support to a young family member that is so sick--watching the struggle from afar knowing how limited you are to help--that's heart wrenching. So, I got busy doing whatever I could that would offer some relief to my family and help me claim some agency in this process--I started raising funds.
Raising funds for medical expenses and expenses associated with making sure Megan's family can support her throughout her care and recovery has been an incredible job--one that is simultaneously humbling and inspiring. It's not easy to ask people to support someone--but when a family is faced with this level of medical expense, we have little choice. We have to humble ourselves and ask for support. Humility is a virtue, and one I'm learning and re-learning throughout this fundraising experience. But, for every person that shoves Megan and Noah into a generic category of needy kids, (ie--one classic response "there's a lot of sick kids out there, ma'am") there are so many others who go out of their way in ways that inspire my faith in humanity and help me to see the beauty in the people all around me. This experience has changed me--and it will continue to change me. I embrace that change and hope that it results in benefiting not only Megan and Noah, but others who, like our family, will be blindsided by the most unimaginable news and be haphazardly thrown into the harsh world of childhood cancer.
This story, though is not mine--I am playing a very small part in the much bigger story of Megan and Noah--their bravery, sacrifice, love, and hope through this struggle. And they are playing a part in helping us to see what childhood cancer looks like up close and personal. As hard as that is to see--it's important to recognize and accept that this is an experience that you cannot turn away from. Not one of us can. The effects of disease and illness on families, psychologically, emotionally, physically, financially, relationally--cannot and should not be ignored. Families are increasingly finding themselves in this or similar situations.Though this is something I have long been studying--Megan and Noah personify clearly why I do what I do as a professional and, honestly, as a person.
To follow the REAL story here, go to Megan's Mountain on Facebook: https://www.facebook.com/megansmountain
And, if you are so inclined, please share this story with others--the more help and support for these brave young kids, the better. Thanks.