Holden was diagnosed with Wilms Tumor on his left kidney in October 2010, and his oncologist told me, "Wilms is the best kind of cancer to have."
I beg to differ; no child should have to endure cancer and the havoc that treatment wreaks on their little body; no family should have to endure the trauma of treatment, the specter of late effects, and the lurking, nagging fear of recurrence and relapse. His doctors amended his diagnosis quickly; first, from Stage II to Stage IV with the discovery of a nodule on his lung. Then, from favorable histology to diffuse anaplasia. His chances of survival went from 95% to 30% in a few heartbeats. And they warned us: "event-free survival equals overall survival." If it came back, there was nothing left in the arsenal. Holden weathered the storm and went through the toughest treatment on a COG clinical trial. He achieved No Evidence of Disease (NED) status and had his central line removed on his fourth birthday.
After fourteen glorious months of enjoying NED, Holden got a sharp, sudden pain on his right side and we took him in two weeks early for a quarterly checkup. His CT scan revealed that he had a 6 cm Wilms Tumor (that was not visible on his CT scan just two and a half months prior) on his remaining kidney. It was not a relapse, it was, as the doctors said, "a metachronous lesion on the contralateral kidney." In plain English, it was bilateral Wilms Tumor, just at separate points in time. It was not a relapse, so we had hope. But Holden had to go through the entire course of treatment again. His doctors were unable to save a functioning portion of his remaining kidney, so he was on hemodialysis for more than half of the second round of treatment.
The first time, Holden blazed a trail. The second time was much harder; more infections, more hospitalizations, trouble with dose adjustments required because of hemodialysis, "late" effects like congestive heart failure starting to show their evil faces. But he did it. He marched through with strength and determination. And a smile. His first day of kindergarten was two weeks before the school year ended; then he went to first grade three days a week (despite hemodialysis three days a week). We were in the midst of a living donor transplant evaluation and discussing setting the date when we discovered a metastatic tumor in his lung. We slowed it with targeted high-dose radiation, and enjoyed five more months with Holden. And he enjoyed himself, being a kid, riding the bus, playing baseball, sharing his infectious laughter.
Wilms is rare.
Diffuse anaplasia is rare.
Metachronous Wilms is rare.
Rare³ = unique. But that is just what Holden was. Unique. One of a kind. Irreplaceable. Unconquerable.
Most families facing a diagnosis of Wilms Tumor are fortunate, because there has been a lot of research and it does have a high survival rate. We were fortunate in that Holden was our son, brother, and friend; but unfortunate in that he was a statistical outlier when it came to surviving Wilms. Our goal in partnering with St. Baldrick's is to raise money that will go to funding critical research to not only find cures for pediatric cancer, but also to mitigate the side/late effects that will haunt these children for the rest of their lives. We want to save the Holdens of the future, because when we lose each one, we lose a lifetime of potential.
Donations made to the Invictus Fund have funded St. Baldrick's Fellow grants for Lisa Niswander M.D., Ph. D, and Samara Potter M.D., M.B.A., a St. Baldrick's Scholar Grant for Elizabeth Stewart, M.D., and two St. Baldrick's Research Grants for Garrett Brodeur M.D.
The St. Baldrick's Foundation is guided by a Scientific Advisory Committee, comprised of leading experts in the childhood cancer community, to ensure that every dollar makes the greatest impact for kids with cancer.
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