To the Church and our brothers and sisters in Christ,
It's hard to know where to start... Our baby girl, Kriseya, has been through so much. In January of 2015 she was diagnosed with a large brain tumor that they said was benign and slow growing. She underwent several procedures and 15 months of chemo. Kriseya finished chemo in May 2016. Scheduled for scans every 3 months, the tumor showed a good reduction in size since the original scan, down by almost 1/3. The MRI in March 2017 showed the same thing, staying stable since the end of chemo and nothing new. They said she wouldn't need treatments for at least a long time, so they removed her port. The next follow up scan that was done on June 10th, however, was concerning. Now, what the Doctors say and what we want to positively believe are 2 different things. I will tell you what the Doctors have said but I am not confirming these diagnoses because I resolve to stay positive. They say that her benign tumor is acting aggressively and that it has deposited cells into the CSF (CSF Dissemination https://www.researchgate.net/publication/279434456_CSF_Dissemination_of_Primary_Brain_Tumors)
The follow up MRI on her spine leads them to believe this is true and it has spread down her spinal cord. 3 months ago, Kriseya's scans were fine. Now they say they want her to see a specialist, they say if this is what they think it us then this is very serious, more so than I am prepared to discuss currently, please check the link above or google csf dissemination first. One of the new issues is that there are no specialist in our area. We will have to pick the best place, travel there and hope our insurance works with us and covers it, which is scary too.
We need help and Kriseya needs prayers and positive thoughts.
We have asked her to make a "Phineas and Ferb" list (bucket list was too negative). We want her to get to do everything she wants, we want her to enjoy being a kid despite the scary news she just learned. There will be travel, how far we don't know yet but likely to Boston. There will be so many expenses that we can't handle on our own and taking time away from her to work is not something we can do.
Kriseya is so special, and I know every parent says that but this is different. She stops to talk to people and asks how their day is going, she carries out short conversations with them and then they turn to us and say, "She is like a ray of light!" or "She is so smart". We sat down to eat a little cafe the other day and the waitress took our order then walked over to the kitchen and said "That little girl is something special! You should come meet her!". It is a vibrant and radiant quality that shines from Kriseya. She plans to be an Aerospace Engineer when she grows up but I know that no matter what she decides on, she is going to change the world.
Please help us to give her our time, please help us to get her the best care and treatments without the stress of insurance issues and please help us to make Kriseya's childhood memories to be much more than hospitals.