Rylee Schroeder

Rylee is going to be a senior this year at Neosho High School and is in Choral Program.  With the permission of Megan and Levi, the Choral Boosters are sharing her story. This is going to be a long and hard road. The family will be needing all the support that we as a community can give them.
Rylee has at this time been diagnosed with MDS: Myelodyplastic Syndrome they sometimes call it Pre-Leukemia and that is because it can rapidly turn into AML: Acute Myeloid Leukemia. So basically her bone marrow has quit working right. At this time they are waiting for one more test result that will be back next week that they are waiting for because there is a type of the AML that likes to masquerade around and look like MDS to the pathologist but really it is AML. If hers happens to be that then her diagnosis will be changed to the AML.
Since they are waiting on that one test for final diagnosis they let us come HOME late tonight so that Rylee could be home for just a little while before she has to be up there for months and we turn her world upside down. So she is pretty much house bound to keep what little immune system she has left safe while we wait to start Chemo but promised her we would take a drive every once in a while so she can get fresh air and just see the country side.  She is happy to be home for a bit. We do have to check her blood levels at our local lab since her bone marrow isn’t working right to keep them up. We will also be traveling back and forth to CMH to get her transfused possibly twice a week. She is scheduled to be up there Friday for one. And we have to more importantly keep her healthy for her transplant.
Levi and I and the kids will be getting tested this weekend also if they want to, to see if any of us are a good enough match for Rylee.
Depending on her final diagnosis we will know when to start treatments. If she is considered to have AML they would start immediately she would be readmitted to CMH to get a port put in and start chemotherapy and radiation to kill off her bone marrow and the AML. After about 6-8 weeks of that then she would undergo her bone marrow transplant if a match has been found. Then she would stay there for a few months until the new bone marrow started to take hold and start making her new cells.
If it stays MDS everything stays the same except the length of Chemotherapy and radiation. It would be done 2 weeks before her bone marrow was scheduled so a shorter amount of Chemo and radiation. It would start in 6-8 weeks. But we already have things in motion the Bone Marrow Transplant Team have been seen and they have what they need from Rylee to start doing their test. It is all confusing but really it boils down the are going to destroy he bone marrow and hopefully put in a healthy good bone marrow match then wait for it to take hold and start seeing her levels climb. So this is why once we go back up to get Hickman or Port we are up there to stay until she is out of the woods enough to come back home because they can’t afford for her to get sick she won’t have any sort of immune system to fight off even a cold until it took and her levels came up. So that would be two months in the hospital not including her finish for chemo and radiation and then a few months staying close to the hospital for easy monitoring and follow ups and then as she got stronger they would get to taper down her follow ups until it was safe to be 3 hours away and come once a week.
So there have been a lot of tears and a lot of questions and just a lot and we are drained. We have a long road ahead of us. We want things at home to be as normal as possible for Erin and Colin’s lives and keeping them feeling loved and not forgotten along with taking care of Rylee and getting her to where she will be healthy again and we can be home to finish healing. 
She has been through and overcome so much in her short life and now we have the biggest battle yet. Prayers desperately needed and thank goodness our church is still doing live service so we can still be there because we will need it! We love you all!