Our daughter's battle with MDS cancer continues

Hi, we are the Cathey-Carlson Family. We are a family of five trying to figure out how to fight this terrible disease for a second time. We have three childern, Caylee, 21 who is battling cancer, Wyatt who is 9, and Shelby Grace who is 7.

We are a very close knit family. Everything we do is always together as a family. We first found out our daughter Caylee was sick back in February of 2022. She started out by getting very tired and her feet and legs kept getting swollen. We went to multiple doctors till one day they sent us to a dermatologist for a rash on her legs. The doctors did a skin biopsy and the results came back as she was bit by a bug. Just a few short days later they had us going to a hematology/oncology office to get a full cbc panel done. When the results came back in they gave us the devastating news that our daughter was not bit by a bug, but in fact has an extremely rare for her age blood cancer called myeloid plastic syndrome with excessive blast. Caylee was diagnosed when she was 20 years old, most people get diagnosed with this cancer once they are 65 years old or older.

This is Caylee when we first found out she was sick. At the lake with her family trying to have some fun to forget the bad news. What most people don't know our daughter also has an intellectual disability which makes thing harder day to day. Especially with having to remind her that she is sick and she can't do all things she once did.

Caylee's first time around was not easy. She had to do out patient chemo shots in her stomach. She would take two shots for 7 days in a row. That's a total of 14 shots in 7 days. There was lots of bruising and a lot of sickness. She had to repeat this every 3 weeks. As well as getting blood transfusion when needed. Her oncologist at Emory decided to get a port placed in for easier use since her veins weren't doing that well.

Wyatt and Shelby Grace handled this change with their big sissy the best they could. Being so little they understood she was sick but didn't understand how bad it was. There was certain things Caylee ( big sissy) couldn't do because she wasn't feeling well so we would have to change plans around so we could include her in all things we did.

MDS-EB2 is an aggressive blood cancer. Caylee had 18% blast in her blood. She was right at the cut off line to having acute myeloid leukemia. AML starts when you have 20% blast in the blood. This type of cancer can not be cured with chemotherapy or radiation. The only cure is a stem cell transplant or bone marrow transplant. Caylee's oncologist put her on the donor list to recieve an allogeneic stem cell transplant. Within weeks we had matches.

We live to far from the hospital so our family had to break up. Dad (Josh) stayed at home with Wyatt and Shelby Grace who had to go to school and took care of our farm, and mom and Caylee would have to be at the hospital and then live in Atlanta which is about 1 1/2 hours away. Our kids do everything together so this ripped us apart. Caylee and I left the last week of October, right after her 21st birthday.

While in the hospital, the little ones were not allowed to come down which was devastating for them, as well as big sissy. The two little ones where scared their big sister was not coming home. They asked multiple times if they would see her again. We faced timed a lot with each other. Caylee got extremely sick the first week with the invasive chemo that was given. Her hair came out, so mom had to help her shave it. Luckily Dad helped her shave it before coming to the hospital so it wouldnt be to much of a shock for her. Caylee became extremely week, wouldn't eat, began to get fluid in her stomach, which they gave meds for. November 4th, we will never forget, was the day for her transplant, the day we were hoping for, the day we were praying was going to cure and save our child.

Our poor girl went through so much with her transplant. From getting so weak and passing out on the floor and having code red called, to ending up with bacteria infections in her picc line and needing it removed, having her brain waves monitored because they thought she was having seizures, having fluid on the outside of her bladder and more. It was a constant battle while in the hospital. We finally got discharged and was able to stay at the Hope Lodge in Atlanta for our stay.

Our stay took a toll on all of us. We were separated for Halloween, Wyatt's 9th Birthday, Moms birthday, Thanksgiving, Shelby Grace's 7th birthday. Thanksgiving week was hard Caylee ended up back in the hospital for a week. She wasn't able to eat or drink. The medication she was having to take since she ended up with graft vs host disease after her transplant was actually putting her in acute renal failure. So more medication had to be changed. I did get my parents to come stay with her for a day and I got to surprise my little ones and pick them up at school. They had no clue mom was coming home for the day. First time seeming them after weeks, it was very emotional. I also was never separated from my husband Josh so I was excited to see him as well!

I had to have Caylee at doctors offices about 4 times a week for normal routine checks, labs, blood transfusions, and platelet transfusions. Christmas was coming up and Caylee was really down so her oncologist gave me the okay to take her home for 2 nights. We surprised Josh, Wyatt and Shelby Grace, it was the most heart warming surprise I've ever seen. They haven't seen each other in almost two months. There was tons of hugs and tears shed by our children.

Caylee and I once again had to say goodbye to our family and head back. We did one more month at the Hope Lodge and was able to come home.

Caylee went back at day 100 to get a bone marrow aspiration. Day 100 is a big deal. Day 100 is the day that will tell you if the transplant is working. February 13th she had her marrow pulled and we waited the two weeks for the results. Her oncologist at Emory said there was no evidence of cancer found at all in her system.

Caylee was feeling great. Day 140 came and it was time for another bone marrow aspiration, still no evidence. By now we are all doing the happy dance... Day 160 comes and yet again, another bone marrow aspiration. Her oncologist set up a video chat with us. He was sad to inform us Caylee's cancer had come back. Her cancer cells, were stronger then the donors cells and they started taking over. She is still mds it has not turned into AML, but unfortunately we will have to repeat this whole battle again.

Caylee has already started chemotherapy pills as well as a chemotherapy infusion this time. Her infusion is 5 days in a row with 3 weeks off all while taking 4 chemo pills a day.

This time her body could not handle it. We had to stop her chemotherapy pills after 2 week of taking them. We went to get her cbc panel done and all her numbers crashed. They sent me straight to the ER with her to get blood. While there she began getting a fever which anything over 100.6 is a fever for a transplant patient, hers was 101.3. The ER doctor called Emory in Atlanta and her doctor said I want her her now. Caylee went in an Ambulance as I ran home to get clothes and say goodbye to Josh, Wyatt, and Shelby Grace. This completely tore our little ones up because they didn't know what was going on this time. Last time we had enough time to explain this time it was fast. Caylee and I spent a week at the hospital and then had another video chat with her doctor once we got home. He explained to us he is getting her back on the donor list but it may take awhile. He needs to find a 10 out of 10 donor for her this time. He is hoping with the current donors blood she has and a new one it might fight it even better. So now we are sitting ducks. Caylee has no immune system so we have to be careful where we take her. She can't go in the water and swim ( which is hard it's the summer and we live in the South). Her graft vs host disease has come back since we had to stop certain medications when we learned her cancer came back.

All the funds we are trying to raise would be going towards gas, car repairs, lodging, and food while we are in Atlanta or going back and forth to the doctors. As well as trying to do some fun activities with all the kids, before we have to separate again for another 3 months. We are also in need of trying to complete some repairs around the house that we started after we thought Caylee was clear. We will keep you updated all the time with all the kids. My husband Josh and I appreciate everything everyone has done for our family. Thank you and God bless. If you want to follow our story find us on Facebook under Caylee's Journey