Help Katie Battle a Mystery Cancer

On August 23, 2023, my dear friends Merridith and Rob, heard the words every parent fears: “Your child has cancer”.

What began as minor back pain for Merridith & Rob's daughter, Katie, was quickly diagnosed as a malignant tumor in her sacrum. Positioned at the base of her spine, the tumor was aggressively compressing the sciatic nerve going down her left leg – causing numbness, weakness, and severe pain.

Katie and her family live in Santa Fe, and were referred to the children’s hospital in Denver, where they anxiously awaited the results of a pathology report that took forever to arrive, while Katie’s pain just grew.

Then, after four very long terrifying weeks, the family finally got some answers. Doctors determined that Katie has a very rare type of sarcoma (a tumor occurring in soft tissue). And while they still don’t know exactly what kind of cancer it is (and may never know) they do know it is being caused by the fusion of two genes: the TPM3 and NTRK-1 genes.

Now working with the pediatric oncology team at Memorial Sloan Kettering Cancer Center in New York City, Katie has joined a small and courageous group of patients who are pioneering the TRK inhibitor drug which prevents gene fusion in the NTRK-1 gene and prevents and reduces the growth of the tumor. Early signs show this drug is working. Katie has started to regain sensation in her back, legs, and feet. Her pain has decreased and her mobility has improved.

Surgery will be required to completely remove the tumor. The treatment and removal of sacral tumors is hard; because of their location, they are extremely painful, they generally require the extraction of bone, and are located close to nerves critical to walking, bowel/bladder control, and sexual function. In Katie’s case, a portion of her sacrum and spine will likely need to be removed and rebuilt, and she’ll face irreversible nerve damage.

The next few months will be critical to Katie’s care as she continues the TRK Inhibitor, rebuilds her strength after months of immobilization, recovers from drugs she has been taking to manage pain (including steroids, which have caused a 50 lb weight gain) and opioids (which make her extremely lethargic) and finding an extremely capable and excellent surgeon to perform the operation needed to fully remove this tumor. In December 2023 they will return to Sloan to evaluate the success of the TRK inhibitor in reducing the tumor size and decide on the next steps.

This drug treatment is the first phase in what may be a lifelong journey.

During this time, medical expenses related to Katie’s care, treatment (even with insurance), and travel (airfare, hotels, meals) have mounted quickly. To compound matters Rob & Merridith have had to scale back at work, decreasing their income.

As their friend, I hate that they have to think about covering these financial costs when really their focus needs to be Katie and her care.

Merridith and Rob have always been so generous to their friends and those in their community. Friends and family have been asking how they can help. I created this Go Fund Me page to relieve some of their financial concerns. Please contribute if you can ~ any amount is appreciated ~and share.

I will be using this platform to post updates and inform family members, friends and others about Katie’s progress over the next couple of months.

Thank you for your support and generosity to help my dear friends through the most difficult time of their lives. ~Kate W.