4 year-old Jaylen was born with Spina Bifida (Cleft/Split Spine: a birth defect that involves the incomplete development of the spinal cord or its coverings.) We would go to approximately four clinics for visits and check ups that were Spina Bifida related, this became our routine. Suddenly, he started looking a little pale and soon enough yellow but, it wasn’t really something that jumped out to me because I knew he was getting older and not really going outside enough because of his condition.
Two weeks passed by and I observed him carefully each day while debating whether to carry him to the pediatrician. Of course then, I didn’t think it was anything serious so I just gave him some time to see if he would have been back to his normal self or the yellowness would go away. He started to become very clingy and didn’t want to play with his toys or be active and he would ask me to stay in bed with him all day. He’d sleep and just was not interested in being active because he didn’t have the energy. He’s usually a clingy child so I innocently thought nothing of it.
One day, after picking him up from school, I realised he was sleeping during the drive home- this was extremely unusual. The following day, I visited his school and his teacher explained that he was not very interested in doing anything but lying down on the desk and sleeping. While talking to her, he started to cry and fussed for me, so I went across and he rested his head on my shoulders, almost fainting away.
Immediately I drove to his pediatrician. I mentioned to him the yellowness and constant fatigue that at the time stood out the most. The doctor’s response was, “Mummy, just pack a bag and go straight to the Emergency at Mt. Hope.” In that moment, I was terrified and questioned what was wrong but I followed his instructions. The triage doctors organised a room which was odd because we’d usually go to a table and sit down. I became even more confused and terrified. The doctors then put him on a bed out front, asked a million questions and took some blood. They sent it for testing while they did medical procedures. A while after, the doctor came back and asked if anyone was with me. I responded “no.” She asked if I wanted to wait on someone. I thought that it was very strange for her to ask those questions, so I inquired.
She went on to say that she didn’t want to scare me but based on the white blood cell count, there was a possibility of him having cancer. I looked at him while my mind was stuck on everything that he had already been through. I felt as though I had already gotten to a point of empowerment and understanding where Spina Bifida is concerned and then to get the news of his diagnosis being cancer. I began thinking about how much more he had to go through and that really broke me. I enquired about the type of cancer and the doctor was unable to tell me but went on to assure me that the JBF oncology ward is great. I began crying as any emotional parent would after hearing such news, I was clueless and didn’t know what to do.
After finding out, I looked it up and my journey started with understanding and becoming comfortable with ALL (Leukemia.) There weren't many signs. One thing that keeps replaying in my head is the fact that he didn’t have a fever, that in itself shows how different it is for each child. For me, nothing seemed that serious and looking back on pictures now, I am able to see the changes. A week before Jaylen was diagnosed, we went to the zoo and I remember clearly that he was reluctant to use his walker to walk around. At the time it did not seem serious but now I think to myself; “All that time my child had cancer and I had no idea.”
The Progressive Journey:
I won’t call this journey a struggle. I’m treating this just as I treat Jaylen’s Spina Bifida. I have control over that and there is nothing about it that I don’t know or understand. I just want the best for him; he is such a contented, determined child and I have faith in his willingness. As a parent you learn how to rise through situations and emotions. I know that once I understand what is happening, I will be fine. The JBF SU really helps in gaining information about each medication so I am not traumatised by his reactions to these medications.
Jaylen is so strong in all of this, his contented attitude gives me enough support. He wishes that he can do everything and I hope that one day he will be able to. Even looking at other kids playing, he knows he is unable to move around freely right now but he is accepting it and believes that maybe one day he will get better and be great.
Like any other parent, I had a totally different agenda and life plan before finding out about Jaylen’s cancer diagnosis, but situations like these show you that health is more important than a new, shiny car or some other materialistic goal. Of course there are some things you can do for sanity’s sake but for me, nothing is more important than focusing on Jaylen and his health right in this moment. I will achieve everything, eventually, once I know that he is okay.
A word of advice to other parents, take it one day at a time. If you try to absorb it and think about every scenario down the line, you will upset yourself. It's very important to be emotionally present with everything that is going on and even though there are stumbles throughout the journey, it is still a journey. There are moments in it that you will never get back but there are positive things that do happen amidst the cancer. Cancer sucks- but we can all fight it.
“The Lord himself goes before you and will be with you; he will never leave you nor forsake you. Do not be afraid; do not be discouraged.” Deut 31:8 (NIV)
Warning Signs of ALL:
Acute lymphoblastic leukemia (also called acute lymphocytic leukemia, or ALL) in children is cancer of the blood that starts in the bone marrow (the spongy internal part of bones where new blood is made) and spreads to the bloodstream.
Leukemia develops because of a mutation in a white blood cell that causes it to multiply uncontrollably. These mutated white blood cells, called “blasts” take over the bone marrow and crowd out normal blood cells. One blast soon generates billions of other blasts, with a total of about a trillion leukemia cells typically present in the body at the time of diagnosis. ALL is the most common children’s cancer.
Signs and Symptoms:
• Tiredness, weakness and/or paleness.
• Fever and/or Night Sweats
• Easy Bruising or bleeding (tiny red spots may show on the skin)
• Bone & Joint Pain (joints may be swollen)
• Weight-loss or Loss of Appetite.
• Enlarged Lymph Nodes.
• Belly Pain (persistent)
Submitted by: Chevaughn Joseph
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