Katie's MACnificent Story
Her mom made her an appointment to see the doctor. The doctor didn't seem too alarmed, but ordered blood tests, and her parents really didn't think much of it since Katie is often bruised a lot due to how hard she plays, and soccer had just started for her. If you know her, you know she will go to extremes to get the ball or win at any cost.
After all, Katie was acting totally normal. No symptoms at all but the bruising. No rush to get the labs done that day. Her dad would bring her in a few days. However, by the weekend, she informed her mom that she had been on her cycle for two weeks. Her parents got a little worried, and her dad took her at 8:00 on a Monday morning to get her labs done.
About an hour later, her mom received a phone call from the doctor. He told her to take her immediately to the ER. Her platelet count was a 5, which normal is 150-350. Platelets give your blood the ability to clot, which also explained why her cycle had not stopped. She could have cut herself or hurt herself somehow at school and her body would have not been able to stop itself from bleeding. Thankfully, her mom only worked about five minutes from her school. She rushed over, and soon after, they were at the ER, where they would stay for the entire day, until they were admitted late in the afternoon.
Katie has always had a fear of needles. She was stuck multiple times ... more blood drawn, more tests, then the IV. By the end of the stay, her fear of needles seemed to dissipate.
Katie was admitted because her platelets were so low that she needed a platelet transfusion. They were also admitted because, not only was her platelet count low, but her red blood count, and white blood count. All three were low. The blood tests could only tell so much. They would wait until the next day for more detailed results.
Katie received her transfusion throughout the night. The doctor came in the next morning and told them that the blood tests were inconclusive and he would have to get the results he needed from a bone marrow biopsy/extraction. As he said, "When you look at the bone marrow, it's like looking into the future." What happens in the bone marrow, the building blocks of the blood, will eventually happen in the blood.
They questioned him on what this could be. What would he be looking for in the bone marrow? There were three things that could be causing Katie's condition: a viral infection, aplastic anemia, or leukemia.
That was something no parent ever thinks they would have to face.
Through all this her parents spoke truth to her. The truth is that God is a healer. God is good. God loves us. God doesn't want Katie sick. God still has great plans for her, just like her parents have told her all her life. They prayed and believed and hoped for the best. They quoted Scripture to her. Countless people came and prayed for her, as they continued to hold onto hope.
The next morning, the test was over pretty quickly, and the doctor immediately checked the labs before sending them off to the pathologists. He gave them a preliminary diagnosis of aplastic anemia. They were extremely grateful it was not leukemia and continued to pray for an even better report after the final labs came back. Daphne, Katie's mom, began to research aplastic anemia since they had never heard of it. No one had ever heard of it. In fact, their doctor, who has treated hundreds of leukemia patients had had only one other aplastic anemia patient in this area. It is very rare. Only one to two people per million per year are diagnosed with aplastic anemia. That's about 300-600 cases a year in the U.S.
Aplastic anemia is a disease of the bone marrow. The bone marrow stops making enough red blood cells, white blood cells, and platelets for the body. Any blood cells the marrow does make are normal, but there aren't enough of them. Again, they were thankful it was not leukemia, but this was not a good diagnosis.
Because Katie had received a second platelet transfusion, her count was good enough to go home the day after her procedure. The doctor was convinced it was aplastic anemia and told us to start thinking about how we wanted to treat it. They would meet with him the next day after he extensively studied all of her lab work. Katie was able to go back to school the next day and perform in her theatre show. She complained of headaches, but seemed to be OK for the most part.
They all met with the doctor that Friday, where he confirmed his original diagnosis. Katie had more blood drawn to show her levels. The reason she was having the headaches was due to the fact that now her red blood count was low and she was very anemic. She would need a blood transfusion when they saw the doctor later that week. Until then, they kept watching her, almost like when she was a baby. Daphne actually checked in on her most mornings to make sure she was still breathing, like she used to do when she was a newborn.
They discussed treatment with the doctor extensively. The best treatment possible is stem cell transplant, which is what the parents have opted for. The family traveled to Texas Children's Hospital to get tested to see if any of them were a match for Katie. Unfortunately, they were not. The second option of treatment is immunosuppressive therapy, which Katie started June 1st. This has an 80% success rate. Midway through her treatment, Katie's diagnosis changed. After performing a second bone marrow biopsy to extract more material and for more tests, results came back with some chromosomal abnormalities. The new diagnosis they were faced with is MDS (Myelodysplastic Syndrome). MDS is a bone marrow failure disease, which has caused the aplastic anemia. The only treatment for MDS is a bone marrow transplant. Because there was no match in the immediate family, the search in the bone marrow database began. There is a 75% chance of matching a donor in the database.
The great news is there is a potential perfect match and the process has begun to inform the possible donor and schedule the transplant. The transplant will happen in Houston at Texas Children's Hospital.
Since then Daphne has had to quit her job because Katie's care requires all of her attention. They do have insurance, however, there are many other expenses that come with such a lengthy process. The bone marrow stem cell transplant requires a 3-4 week hospital stay and 100+ days staying 10 minutes away from the hospital. Once realeased, she will have multiple clinic check-ups throughout each week. Katie's immune system is expected to be weak afterward and her risk of infection is great. Her full recovery time could be upwards to a year, but hoping to see great results before that.
There's already been such love, support, and prayers, but many have asked how they can give to this family. This is a perfect way to become a part of "Katie's MACnificent Story" of healing.