I would like to share a little background about Makayla and why she is so unique. Makayla had a very unique start to her disease. She is actually the only person, up until this point, to have ever been diagnosed with leukemia the way that she was. I would like to share the general story with only as many details as needed, as it is a long story.
Her medical condition is ALL Leukemia. Acute Lympoblastic Leukemia. We first found out that she was sick on October 2nd, 2012. She seemed pale and overly tired, so we took her to her Dr and they drew blood. A few hours later, we got a call from the hospital stating that she needed to be admitted, a blood transfusion and to see a specialist. That was when we met Dr Jason Canner. He performed a bone marrow biopsy and aspiration. The results of that did not show leukemia but did show an abnormal cell count in her bone marrow of 7-8%. Dr Canner explained to us that with leukemia, the abnormal cell count is typically between 90 and 95%. She received the blood that she needed and started to recover on her own. After a 6 day hospital stay we were discharged with more questions than answers. Dr Canner said that we would continue to monitor her blood counts weekly and would re test the bone marrow in 3-6 months. As the weeks and months passed her blood counts slowly stabilized and we thought that we were in the clear. At that time, the diagnosis was still inconclusive (per John Hopkins Hospital) but was thought to be a bone marrow virus. What we were told is, anyone that ever gets any sort of illness, like a cold, throat infection, or whatever can be at risk for this. It is a VERY rare condition that sometimes happens.
Now it comes time to do the 2nd bone marrow procedure and the results of this one had the Dr's even more puzzled. Her abnormal cell count had increased to 17-18%. Also, they sent her bone marrow to John Hopkins again, as they are able to do more thorough testing. This test is called a flow. Basically they look for a color scheme and pattern. Makaylas' pattern matched leukemia but her color scheme did not match leukemia or any known cancer or diseases. This has never been seen before, up til the current day. The doctors had a strong feeling that her diagnosis would end up being ALL Leukemia, but they were not able to treat her or do anything but monitor her, until the abnormal cell count was at least 25%. This is because there are so many types of leukemia that they had to be sure which type she had and could not do that, at that point. So basically we had to wait for her to get sicker before we could do anything to help her. At that point they also did a ct scan of her liver and kidneys, as leukemia typically attacks these organs first. Sure enough, even with the abnormal count being so low, the cancer had already done damage to both of her kidneys and her liver. We then decided at that point that we would monitor her blood counts weekly and perform monthly bone marrow testing. The very next week after we had the meeting with Dr Canner and made a plan of action, when they checked her blood the Dr took a little bit on a slide to look at it under a microscope and saw 1 leukemia cell....just 1. They felt that this meant her bone marrow was probably damaged enough for a diagnosis so on Valentines Day of 2013 we did the 3rd bone marrow and the abnormal cell count was 95%! Insane how fast it happened! She was diagnosed that day with ALL Leukemia and started chemo and had her port surgically placed the next day. It was a relief the day she was diagnosed because it took so long to get an answer and we saw our baby getting sicker but there was nothing we could do about it. It was seriously the hardest thing to deal with. She had just turned 3 years old when all of this started back in October.
Her treatment was very rough on her. She actually holds a record for the most hospital admissions and ER Room Visits for fevers during treatment. This is outside of frequently scheduled doctor visits. We were admitted or in the ER Room 46 different times, sometimes staying only 24-48 hours, others lasting up to 2 weeks. She even has more admissions than the boys, who have an additional year of chemo treatment. She has had a total of 5 bone marrows done, most only have 3 total. She has had 20+ spinal tap procedures as well. She also has had about 15 different types of chemo. She lost her hair twice but it has grown back so fast, its actually longer than mine.
Now 2 and 1/2 years later, as of April 23rd 2015 she has completed treatment and is cancer free!!! She never once had a bad attitude or let this awful disease slow her down! She is truly my hero!
Ride for Hope will take place on 8/15/15 in Dyer, Indiana (a suburb of Chicago). It will be held in honor of 5 year old, Makayla, who just completed 2 and 1/2 years of treatment for Leukemia, and is now cancer free! We will be donating the funds to the Cure It Foundation, for childhood cancer research. LifeSource and Be The Match will be on location as well.
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