On August 13th I received a call from the school nurse regarding Ariyele and that she was very pale looking and in taking her vitals she had a higher heart rate than what should normally be. Nurse Mariah suggested that we take her to be seen sooner rather than later. I called her Pediatrician office while I was getting my shoes on to go pick up Ariyele from school and they advised that they would not be able to get her in until much later in the afternoon. At that time I knew in my heart something was wrong and made the decision to take her straight to the ER instead.

When we got to the ER they started off with basics and took her blood, did some X-rays as they were hoping that it might be mono. Sadly it was not mono and when the labs came back both the ER doctor and the PA that was tending to us came in to let us know that her White blood, Platelets, and Hemoglobin counts were dangerously low to the point of transfusion needed. That started our process of being transferred to the children’s hospital. While we were waiting the PA came in to let us know that they had a bed ready for her in PICU and we were just waiting on transport as we needed to be taken from the ER to the Children's Hospital via ambulance due to the nature of her blood levels. I was rather shocked as when they first told us that we were being transferred it did not seem that it would be going immediately to the ICU.

We then had to be transferred in an ALS (Advanced Life Support) equipped ambulance for safety. We got to the ER at 1100-1130 ish and we were finally transferred to Phoenix Children’s Hospital at about 7pm going straight to PICU. When getting to PICU we were met with two amazing nurses assigned to her for the night along with a night team of Doctors ( I think there was 4 or 5 of them) all trying to figure out what was happening. At that time they let us know of testing that they were going to be running and that we would likely get some results in the morning, but in the mean time she needed to be transfused with Platelets and Hemoglobin (Red blood cells).

In the morning we had another team of Doctors again about 4-5 of them and the words Leukemia and Severe Aplastic Anemia were said multiple times and they advised us that they wanted to complete a bone marrow aspiration to make the final diagnosis. Ariyele levels had to be at a certain amount in order for us to complete this and by the afternoon of 8/14 they were and we were then transferred out of PICU to the Hematology/Oncology floor. This left us just waiting and wondering and I knew what the Oncology side of things could mean.

On 8/15 she had her bone marrow aspiration to check for what could be going on and I begged the Doctor that was now on her care team to at least tell me the preliminary results as the not knowing was extremely hard. This Doctor was amazing and knew that I was not going to hold him to anything until the final results came in so he came and let me know that preliminary it was not showing like it was going to be Leukemia. We did not get the final results back until 8/17 and that is when she was diagnosed with S.A.A the Severe Aplastic Anemia. Where as we were happy that it was not Leukemia (as it is treatable it was a lot to take in at the time) and we knew that we would have the opportunity to go home in the next couple days to continue on out patient care status.

On Monday, 8/19 there were additional labs drawn to be sent out ( to Boston and Canada) that are checking for specific bone marrow failures as this is what this diagnosis is. She received additional transfusions of Platelets and Red Blood and we were released home.

We were released with her taking two daily medications of antibiotic that are preventatives as she does not have the White blood to fight off infections at this time. We were released with weekly appointments needed in which she gets an IV, checks her levels, and we wait to talk to Dr. to find out what transfusion will be needed that day. She has another antibiotic in which is given via IV once a month.

Since being released from the hospital she had had weekly Platelet transfusions and so far one Red blood transfusion. When she went into the hospital I of course stayed with her, part because she wanted mommy, but also because legally I am the only one that can sign any paperwork in regards to her. I was out of work for a week and a half from being in the hospital to needing to get things ready at home. We needed to disinfect our entire home, get her school situated as right now she is homebound and not able to physically go to school due to her illness.

When going for her appointments on weekly we never know how long we are going to be there for as they can not run transfusions at the same time, and they take time to make sure everything is good before they can give it to her. So I have had to miss work weekly and do not have the PTO time to cover it. The economy is already hard enough and we were already struggling before this happened and now things are even worse. So far the bills that we have received from this starting we are at 2k+ and have not received all of them as they are still processing.

We have had many people ask us what they can do to help and the truth is that we have a really hard time being able to express the need for help. We are at the point of not really knowing what else to do.

We are still waiting for additional labs to finish processing at this time and once those are complete we will move forward with treatment options. Treatment options is the standard of immune suppression therapy in which we go back into the hospital for 4-6 days before we are released and continue on the current path we are on of weekly appointments. Other option is to be part of a Study for SAA in which they will randomize if immune suppression is what we start with or if we do an unreleased bone marrow transplant. They would have already started the process for bone marrow transplant if she had a full blood sibling and she does not have that. If we end up with bone marrow transplant what we know so far is that it would put us back into the hospital 4-6 weeks to start but could be more.

We have hit the point where we need help but we also don’t know how to ask or what to ask for. People have asked us if they could do things and our only response that we can give right now is that we are not going to be upset if people want to help us in any way that they would like to. It is their time and effort and we know that in putting time and effort into things for us takes away from other things that they could be doing.

Ariyele right now somehow thinks that her being sick is her fault, she misses her friends and she misses school. She is able to do basic things at the moment with some adjustments and can see one or two friends here and there, but after treatment starts its going to be a while before that will be allowed again.