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Hope and Patience

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Posted 2020-01-14T02:59:17Z


We have a plan.
The last few weeks have been busy navigating a new reality on this journey. There has been a progression in my diagnosis to metastatic melanoma (stage four disease). The results from my mid-December scans showed concern that the melanoma cancer cells spread from my lymph system and into my blood stream, and was presenting in my spleen. This is an unusual first metastasis; more commonly, melanoma metastasizes to the lung, liver, brain and/or bone. On 12/27, I had a spleen biopsy (not a common procedure) and we learned on 12/31 that the spleen was positive for melanoma cancer. I wish it was as easy as removing the spleen which was certainly something we discussed. Given that the disease is now in the blood system, there is the need for a systemic approach. This has been a devastating development, and thankfully, we now have a plan.

At the beginning of last week, we received word that my insurance company denied my recommended next treatment. We are grateful to our medical team at SCCA who quickly appealed this denial. On Thursday afternoon, I learned that insurance accepted the appeal. I had my first infusion of a combination of two Immunotherapy drugs on Friday. The side effects are already more intense as expected. We are hoping this is a good sign.

We are praying for the best and being proactive if another treatment option is needed. In 12 weeks, I’ll have scans to see if this treatment is working. If not, we hope to quickly head to MD Anderson in Houston for a clinical trial. Mike and I are heading to Houston next week for my first appointment in this process. I am pursuing Functional Medicine and Integrative Oncology in the Seattle area as well and trying to find a way for this to support my current treatment plan. We continue to be grateful for an expert oncologist in Boston who remains a consulting source on my case.

This would have been my 10th school year in school administration. It’s hard to believe I won’t be going back this school year as hoped. I am incredibly grateful for the understanding and support of Epiphany School. It really is a special place.

Our entire family continues to be grateful for the support we have received. We are focusing on hope and having patience. Our hope helps to alleviate the fear, and keeps us present to find light and love in each day. 

In December, we got away as a family as we knew there was the potential another treatment was around the corner. There is so much magic being in the snow. Gracie and Benjamin are hoping (and sleeping with their pajamas on inside out and backwards, a spoon under their pillows and with ice in the toilet) that it continues to snow in Seattle. Apparently, this is a trick they learned about in school :)

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