On Feb. 22, 2013, Ayden was only 2 years and 3 months old. He was a regular healthy little boy, but he woke up that Sunday morning with a puffy eye. We took him to Urgent Care, and they thought it was allergies or just a simple eye infection. They prescribed some medications and sent us home. The next morning, when he woke up, his eye was swollen completely shut. His dad, Stan, took him to the pediatrician, right away, as I was at work, more than an hour away. The pediatrician also thought it was an eye infection but recommended Ayden go to the local hospital, where he was to receive IV antibiotics. Stan called me at work, telling me Ayden was going to the hospital.
I drove there about at the speed of light.
Once at the hospital, they put an IV in him (which in itself was very traumatizing for him) and ran blood work. Soon after that, the doctor told us they were transferring us to Hershey Medical Center, because something was off in Ayden’s blood work. When I asked what could be wrong, to cause the blood work to be “off,” the doctor said, “Something like leukemia”. He left promptly. After he left, Stan and I stood in silence, I remember saying, “Leukemia is bad…..” and thinking, “Isn’t that cancer?” Soon the RN came in the room. She asked us if Ayden had eaten. We said no. She said we should make sure he eats, as he would likely be starting on chemo tomorrow. We were floored. The thought of chemo had not even crossed our minds. When I tried to ask her what she was talking about, she quickly said she couldn’t really answer any questions and left.
A few hours later, Ayden and I were transported to the Hershey Medical Center in Hershey’s Life Lion ambulance. That night, we met his now treatment team. I remember his doctor explaining to us, all about healthy vs. unhealthy blood cells and cells in the bone marrow, around midnight that night. The next day, Ayden was sedated for the first time and they took a sample of his bone marrow from his hip, to test his bone marrow, to confirm that he had Leukemia and determine which type. The also put a pic line into his little arm, so they could start pumping IV medications into him. That day, he started chemotherapy just like that nurse had predicted. He then began receiving IV chemo regularly, as well as receiving chemo injected into his spinal fluid, aimed at preventing the Leukemia from entering his spine and brain. He also began on powerful steroids that made him have awful fits of rage. They soon removed the pic line and put a more permanent port in his chest, which could handle the frequent blood draws and IV medications and would allow him to more easily bathe and so on. As he was very ill when he was diagnosed, he remained in the hospital about a month that first admission. Thankfully, I was able to remain at the hospital with him that entire time and his dad most of the time. My wonderful parents kept Zayla for us most of that first month, but she visited us often to play with Ayden and did spend some nights camping out in the hospital with us.
On the second or third day of that first hospital stay, a social worker came to see us. She told us about the Four Diamonds Fund but as we had never heard of it before and our world had just been turned upside down, it was like she was speaking a different language. We were focused on if Ayden was going to live through the night, so not much of what she said sunk in at the time, but I do recall her saying that because of the Four Diamonds fund (which receives money from THONs and MiniTHONS), we could concentrate on Ayden, not on bills.
Since that time, Ayden has been admitted to the hospital about a dozen times, for scheduled chemo treatments, due to fevers or infections, due to severe headaches, uncontrolled vomiting, and other reasons. He has spent several holidays in the hospital and celebrated his third birthday in the hospital, on isolation status, unable to even leave his room. He has received more than a dozen blood and platelet transfusions, has had hundreds of blood draws, stopped walking for a month due to leg pain but was too little to even tell us it hurt to walk, received countless IV chemos and spinal tap chemos, and lost his hair twice.
Ayden is currently in his last phase of treatment. He currently receives an oral chemo daily, a different oral chemo weekly, another chemo monthly via an IV, and chemo injected to his spine every 3 months, He also takes pain meds for his legs 3x a day, anti-nausea medication twice a day, medication twice a day on the weekends to prevent pneumonia which can be caused by the chemo, a week of steroids every month to boost the chemos, and two medications to reduce side effects from the steroids, such as "roid rage." He will continue on this medication schedule, if all goes well, through June of this year. That will be about 3.5 years where he has had chemo running through his body.. At this point, he has been on chemo more than half of his life.. Despite this fact, he is a very happy and energetic boy. He smiles all of the time and enjoys the same things other kids his age do... playing games on his Lindle, Spiderman and the other superheros, Teenage Mutant Ninja Turtles, riding his "bikes," and playing on playgrounds or going to amusement parks (when his immune system is strong enough). Right now he is desperately waiting for snow, because he wants to sled. He went sledding in our yard last winter, for the first time, as the years before, his platelets were too low so it was too dangerous for him to do something like that.
He loves to tell stories and play with his friends (most of who are either other Four Diamonds children or THON students). He also loves to make other people smile... always sending balloons or wanting to visit his friends when they are in the hospital. Despite all the pain, medications, scary procedures, time in the hospital, vomiting, and other struggles he has experienced, as he told his adopted THON organization, "I love my life." And as he told me the other day, "It's always okay to keep trying, but it's not okay to give up. It's not okay to give up because if you give up, it's not going to help you. So, you have to keep trying".