Super Alayna

“On Friday July 19, 2019, we had just finished dinner with our family as we were getting married the next day! We went swimming at my father-in-law’s hotel and noticed a bruise that we had been keeping a close eye on on my 3 year old daughter, Alayna. It had a spot in the middle now that didn’t look right. We both agreed to call the pediatrician on Monday as she was acting completely fine and no other symptoms. On Saturday July 20, 2019 after being together for 9 years and 2 kids later, we were officially married! We were on cloud 9. Unfortunately that didn’t last long and little did we know how much our lives would be changing in 8 short weeks.

We came home Sunday and noticed Alayna had bruising all over her. It wasn’t normal. Finally, Monday came around and we got Alayna into the doctor. She barely said anything except keep a close eye on Alayna. The doctor did say that from hitting her head, it looks like a clotting issue and ordered blood work STAT. We waited most of the day and then the call came. Which something in my gut just told me it wasn’t good. The doctor said that she had already talked to the on-call doctor at children’s hospital and they are waiting for us. Alayna’s lab work came back of her platelets only being at 7,000. (Normal platelet range is 250-400,000.) We packed everything in a rush and my brother and sister-in-law were able to rush down to stay with our 1 year old son, Michael. Once at the hospital they had us go through ER and the doctor on staff prepared us for the floor Alayna was going to. The doctor asked, “Are you aware some of the labs came back and more testing needs to be done? This testing will be done in oncology/hematology. This doesn’t for sure mean your daughter has cancer as there are several different factors and just more testing needs to be done.”

Chris and I just looked at each other in fear. I felt like I was going to pass out for a second but had to keep it together with a smile for Alayna as she looked at us with excitement about riding in the wagon around the hospital. I thought to myself, how could this be happening!? She doesn’t deserve this; no child does! We got settled into the room and the hospital pulled their own labs to re-confirm everything. When the results came back, the PA who was with us when we were admitted came in with the doctor on duty. I just started crying because I could tell this was serious. He sat down with us and explained about the platelets and how Alayna’s white cell count was even down a little so that was concerning. He wanted to do a bone marrow biopsy the next morning.

Hearing those words just sounded so intense. Chris and I cried together. They gave Alayna a platelet transfusion that night and by morning her platelets were 69,000. She had her biopsy done. We played most of that day, and then the next day, her platelets went up to 79,000. I’m thinking ok this was just some weird virus and it’s hopefully on its way out. They sent us home as Alayna wasn’t showing any other symptoms and they didn’t have all the results for the biopsy as it could take up to 2 weeks for most results. What we did know was that the likely chance of it being cancer was very slim as to what they were seeing so far. Awesome! They sent us home with a follow up in 2 weeks to the Oncology/Hematology clinic, but if any new bruising or petechiae had shown then we needed to call. Not even a week later, it returned.

We had our visit, and Alayna needed platelets, of course. They moved our follow up appointment to the following week. We had to try to keep Alayna from doing something where she could fall and hit her head, which in the middle of summer, is very hard. Alayna loves to be outside and running around. Finally the appointment came where we would have a diagnosis. Severe Aplastic Anemia. Alayna’s bone marrow was failing her and only working at about 30%. We talked about her options and some of that treatment is pretty intense and let alone it might not help, and it could come back. Alayna’s other option if we didn’t go the medication route would be a bone marrow transplant. “Not a much better option here,” I was thinking to myself. We were so thankful that it wasn’t cancer, but the treatment for what she has is along the same lines.

Chris and I went home and let everything sink in and started doing our research. Alayna’s best chance at beating this horrible disease was the transplant. And the best preferred donor option is a sibling. We had Michael tested to see if he would be a match. We knew our chances of him being a perfect 10/10 match was about 25-30%. Three weeks went by with more platelets weekly, and now Alayna even needed red blood. She lost weight, her gums were bleeding. Crazy to see how much change that has happened so quick to this little girl. I questioned God a lot asking, “Why her?”

Finally, the day came, and during one of Alayna’s appointments we were going to find out which route we will be taking for treatment. Michael, our only other child, was a PERFECT 10/10 match. I cried tears of happiness. Our silver lining to this horrible storm. Both children went through numerous tests over the next several weeks, and Alayna’s A&C dropped to 0. She was susceptible to catching anything and not being able to fight it off. We had to start giving her daily injections to boost her levels to get them to a somewhat “safe” range in order to go into transplant. On September 16th, Alayna’s port was introduced, and she entered her “circle room” as she called it for the rest of her stay. She was not going to be allowed to leave this room for over a month. We prepared her as best you can prepare a 3 year old. We told her how she would lose her hair, but it’s all ok. We have to get her blood healthy again is what we would tell her.

She breezed through all of the conditioning treatment and chemo. On September 24th, Alayna was Re-Birthed. Mikey did a fantastic job during his harvest and was back to his normal self the next day. Our little angel!

After 31 days in the “circle room,” Alayna finally got to stay at the Ronald McDonald House. We had clinic appointments twice a week. Alayna was thriving and her numbers were great. After 96 days, she was finally discharged, and we could spend Christmas at home. We made it home on December 20th. Alayna and Michael had the best Christmas, and we are so grateful to have both of our children together-happy and healthy! Alayna is still exceeding and everything is going great. She is a warrior! I now understand why god had this happen. He knew she could handle it. It’s really opened my eyes a lot, and I made a promise to her that I would be her biggest advocate and to teach others about aplastic anemia and why bone marrow donation is so important.” -An extraordinary story by Super Mom Ashley Numbers

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