May of 2021 started like any other month. Our family was enjoying the warm weather and spending time with friends and family. Unfortunately, May was the month that our world would change in a way we never expected.
MJ was a healthy and energetic 4-year-old and full of life. He was the one that always brought life to any room. One morning he woke up with severe pain in his jaw to the point he was unable to eat solid foods for a week. After countless visits to the ER and the dentist, his pain finally subsided, and we determined the pain stemmed from him grinding his teeth at night. About 4 weeks later he woke up in the middle of the night screaming in pain that his left arm was hurting, and he was unable to lift his arm past his waist. Again, countless trips to the ER and no follow-up by his primary care. Everyone that examined him was baffled by what was happening, but after a week, that pain went away.
In August of 2021, we decided to take a family trip to LA to visit Disneyland, Legoland, and a few other amusement parks. I could tell something was wrong because MJ was not acting himself. He would have spurts of energy and then all of a sudden start complaining of pain which now had transferred to his right arm. At this point, I was in full mama bear mode and frustrated that his primary care had not reached out and followed up with us. After returning home from our vacation I immediately changed his primary care provider and scheduled an appointment. During the appointment, I could tell there was something wrong just by the look on his new physician’s face. By the end of the appointment, she had MJ in an arm sling and wanted us to do blood work by the end of the week. This was a Thursday, so we needed to do it soon. We waited until that Saturday to do the blood work so that MJ’s dad could accompany us since MJ had not had blood drawn since he was born. After a visit to the lab, we went about our day and ran errands as usual.
That same night, MJ became a bit more tired than normal, but I just thought he was still recovering from our vacation since we had only been home for a few days. MJ and I went to sleep that night while his dad had to go to work, that is when everything changed. I was woken up at 2:30 am to my phone ringing. I did not recognize the number, so I did not answer but noticed that a voicemail had been left. I listened to the voicemail from the ER doctor, and my heart sank. His exact words were “MJ’s labs are abnormal, and we need him to come back immediately so that we can verify the findings.” When MJ’s dad came home, he informed me that he had spoken to the doctor, since the doctor had contacted him after leaving me a message, and we both decided to take MJ straight to the emergency right away. Fast forward, we had only been back home from the hospital for 2 hours when I received another call from the doctors. She introduced herself as a doctor of Hematology/Oncology, my heart skipped a beat and fell in my stomach. As a healthcare provider myself I knew what type of doctor she was. She then proceeded to tell me that MJ did not have Sickle Cell like previously thought, but he had Leukemia. I just started to cry and ask what we needed to do. August 15, 2021, was the day of that call, and by that night we were admitted to the hospital to start our 2 weeks stay and treatment plan.
Over the next 2 weeks, we were informed that MJ’s specific Leukemia was B-Cell Acute Lymphocytic Leukemia or B-Cell ALL. After his diagnosis, everything moved quickly, and over the next 2 years, we would have a few more hospital stays due to his compromised immune system and had clinic visits every 7 days. He also had surgery to place a port in for easier access por blood draws, chemotherapy, and other medications as needed. Watching your child go through something like this is the hardest thing a parent can do, especially knowing that there is nothing that you can do to just magically make it go away. I fought my emotions day and night and la thoughts of what I could have done to prevent this. Chemo is not easy and to watch this little boy have a smile on his face through all of the poking, prodding, hospital stays, and horrible medications, has truly shown me that anyone can fight anything if you are determined to do so.
In the midst of everything, we were introduced to Keaton’s Child Cancer Alliance through MJ’s hospital social worker. They have helped us every step of the way during this journey, and their support has not only been financial, but emotional as well. The events they have put on for these kiddos has given MJ a sense of normalcy, especially when he was so isolated from the rest of the world. He was able to connect with other children who were in the same boat as he was, and Keaton’s support has meant the world to our family.
As of today, MJ is thriving, and his last day of his chemotherapy was in October of 2023. He has thankfully been in remission since September of 2021. The resilience he’s shown, and the resilience of all kids going through this amazes me every day. MJ has embraced his diagnosis and always likes to say that he is “kicking cancer’s butt!” At this point in MJ’s journey, our family is now trying to adapt to the new norm of not having the security blanket of chemotherapy and all the other medications. I think that we are still a close-knit family, but we have a new perspective on life and how we should be living it.
Considering all we’ve gone through, MJ’s resilience and determination are what inspires me the most. His ability to try and make the best out of this situation has truly inspired me to be a better person. Now that he is no longer receiving treatment, MJ enjoys playing flag football and basketball, and he loves playing board games and having movie nights with our family. He also enjoys going to school and his favorite subjects are math and PE. MJ’s journey has greatly impacted our family. I think at the beginning we took things for granted and now we are more aware to be grateful for every positive and negative thing that happens, and we try to find the best in everything. ~ Monet, Warrior Mom of MJ
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