30 DAYS/30 STORIES® 2020
My name is Debra, and I am AJ’s mom. For several months now, AJ has been fighting T-Cell Leukemia that has affected his central nervous system. I never imagined my son having to go through this horrific experience. But he is, and we can only face it head on because he is a fighter!
AJ was an athletic kid. He played football and he was a boxer. He was a great student and such a clown, the kid who was friends with everyone! I started to notice him getting tired fast in his training. He didn’t really have much interest in his football games anymore. Schoolwork that used to be easy was not so easy. He was confused and couldn’t really focus. I was getting frustrated with him. Not knowing that it wasn’t because he didn’t want to,but it was because he had this horrible invisible monster called cancer taking over his mind and body!
He started complaining about headaches in January, so we took him to the ER, and they said he was fine and sent us home. The headaches just kept getting worse, to the point where his eyes were bulging and he wouldn’t eat. He would lay on the sofa and sleep and didn’t want to go to school most days. I didn’t realize that his body just didn’t have the energy to get out of bed!
On February 9th, I remember him waking up with one of the worst headaches ever, and he so weak he couldn’t even bathe himself. We decided to take him back to the ER for the weakness, worsening headache and swelling in his eyes. This time my husband and I were determined to find out what was wrong. Again, we were told it was nothing and that we can “give him Tylenol if it helps the headache.” I just sat there in tears, telling them something was wrong with my son and that this didn’t make sense. So just to quiet me, they ran a few simple tests that came back normal and discharged my son from the ER once again.
That day in the ER at Lehigh Valley Reilly Children’s Hospital, there had to have been an angel looking over us! The attending never saw AJ and right as we were ready to walk out the door, she ran in and said, “wait…I really would like to examine him before you leave! Can you just give me five minutes to take a look at him?” So we did, and she took one look at my son and knew something wasn’t right. She asked to see a picture of him prior to the headaches and the swelling. Before we knew it, he was being admitted to the children’s floor. As we sat in his room waiting for his tests to come back, the doctor came in and sat on the chair next to my son’s bed and told us that they were sure that my son had leukemia.
I can remember my son throwing his hands up in the air and starting to cry, saying “No, what is she saying mom?” It broke my heart to see my son so scared, and I couldn’t control my tears. As soon as AJ saw me cry, he stopped and wiped my tears and told me not to cry because he was going to be ok! From that moment on, I knew that I needed to be strong for my son. He needed me more then he would ever need me in his life!
I laid there in bed with him that night holding him as tight as I could just thinking of everything and wondering how I did not realize something was THIS wrong! I was scared, I was angry, and I felt so helpless. I blamed myself! Why didn’t I see these signs? What do I say to him to make him understand? All I knew was we had to get through it together as a family! I keep telling myself to be strong for AJ…my strength will give him strength! As much as inside I was breaking down, I was not going to let him see that. Whenever I saw him look like he was afraid I would tell him, “look in my eyes.” We have a phrase we say to each other…“I got your back and you got mine!”
For the past several months I have watched AJ go through so much. I’ve watched this horrible disease rip his body apart - but NOT his heart, his mind, or his soul! He is still a loving 10 year-old that will build his strength back in time. Nothing can take away who he is - not even this!
He has been through quite a few hospital stays, a port placed in his chest, bone marrow aspiration, MRI’s, x-rays, lots of spinal taps, lots of horrible chemo treatments, a few blood transfusions, steroids, physical therapy, a horrible allergic reaction - and he still has to go through radiation to his head. Through all of this, he has stayed positive! Don’t get me wrong, he’s ten, so he also has many fears but he’s getting through this the best he can. Some days are better than others. For the most part, he’s handling all of this better than I am!
AJ is a strong kid, and he has a long road ahead of him but he’s doing it.
I owe a lot of that strength and a lot of his smiles to the pediatric oncology staff at Lehigh Valley Reilly Children’s Hospital! As for PCFLV, they have been absolute lifesavers! They have helped my family with cafeteria cards to make sure we ate during AJ’s hospital stays, random donated dinners that wound up being on long exhausting chemo days (when I had no energy to cook for the rest of my family at home), and gas cards to get me back and forth when chemo is 3-5 times a week. I can go on and on because they do so much that my family is so grateful for! Thank you for all you do, PCFLV!
Written by his mom, Debra