Marissa’s Story

Site created on October 2, 2018

Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. Marissa had a bone marrow biopsy on Sept 28th and was diagnosed with Acute Myloid Leukemia Sept 29th in MN. Marissa had her 1st appointment at Seattle Cancer Care Alliance yesterday (Thurs) and met with the oncologist, who confirmed the diagnosis of acute myeloid leukemia (AML)  They are still receiving test results which will determine the exact course of treatment. At this point it will be 5 cycles of chemotherapy each cycle roughly a month long.  She will be staying with her family in Washington for at least 6 months. We will be adding journal entries as we know more. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Ryan Smith

Marissa's immune system is 1 year old today.

Marissa has been back in Seattle, and spent this week with follow up appointments at the cancer clinic.  They performed a comprehensive suite of tests to evaluate her health and compare to baselines taken prior to treatment.

Happy to say no cancer detected!  No GVHD detected!

She's is very healthy and the test results looked great.  She was able to stop a few more meds.  She still has some fatigue, but some of that may be related to meds she just stopped.  The docs also said that will likely improve over time.

She received 8 immunizations today.   Many more planned through July.  The doc said Marissa may have a slightly higher risk to the Corona virus than typical for her age, but overall not too concerned as she's been off immunosuppressants for awhile.

She does not need to return to the Seattle clinic, but will still be followed at the U of M for some time,  intervals between appointments will gradually increase over time.  Today is an important milestone, as a re-occurrence of the cancer after a year is relatively low.   It really drops to a low probability after 2 years.

So from here on out, no news is good news. We will continue to pray for her health and that her cancer stays in remission.

Ever since Marissa was a little girl, she always wanted to go to Hawaii.  For one reason or another we never got around to it.  A year ago was a low time for our family.  Cancer treatment was all consuming with all of its restrictions and normal life seemed so far away for all of us.  So I told her then, that when she got healthy enough, we'd take a vacation to Hawaii.   Angie, Marissa, Dillon, his girlfriend Lauren, and I got back last Friday.  It was a wonderful experience to spend time together as a family. For me, it was also strange to finally catch up to that "normal" moment that at one point seemed so far out of reach.

Marissa has also been talking about going zip-lining forever.  So while on vacation, Marissa, Dillon, Lauren and I went.   There were 5 lines,  the last one a half mile long and for part of it, 600 ft above the ground.  We all had a great time, but Marissa was literally almost shaking from excitement.  Huge ear to ear grin the entire time.  Just 1 year earlier, she spent a week killing off her immune system.  It was so brutal and she was a walking zombie by the time of the transplant.  It was the low point for Angie and I to witness that.  So then to see her there, experiencing pure joy and just living that moment to its fullest; the contrast is so great that it is difficult to really fully explain. But it was beautiful.

So of course we returned home to the massive increase of the Corona virus.  Why can't the high moments in life last longer?  We hope and pray that the med teams will get it under control soon.

So many ups and downs in life. I'm not very good at this, but I believe that when we are in the lowest valleys in life,  we need to have faith that there is a "normal" moment waiting for us out there in the future. And when you catch up to that moment,  breathe in deep, and live it for all its worth.
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