In case you didn’t see my Facebook post:
May 1st 2019
2 days late but a day we will never forget. Day 365 of Tenley being diagnosed with Medulloblastoma. One year.
We had very mixed emotions about this, but overall it’s scary and very overwhelming.
The past year we have:
-Spent over 50 nights in the hospital, plus 30 days of chemo and radiation everyday in Rochester.
-2 months living out of hotel.
-Numerous ER visits
-Several platelet and blood transfusions
-Hair loss and growth
-Hundreds of blood tests
But not only have we endured the medical experience. We’ve given up a lot personally, work, college, and lots of things we’ve missed out on at 19 and 21.
Yes we are thankful treatment was done in a year, and Tenley is doing okay. But Tenley is still not NED (No eveidence of disease). There is still so much unknown it’s scary.
I think these pictures depict how both myself and Tenley are feeling. We aren’t excited it’s been a year. How do you plan for anything when you don’t know what the next scans are going to say?
We aren’t looking for a pity party, we’ve been very positive and real this whole journey. That being said this is how we feel right now.
What’s next? Scans are May 27th.