Beckett was diagnosed on April 25, 2018. His daycare had called and stated he wasn’t feeling well. I went to pick him up, but due to the time (5pm) had to take him to the after hours clinic. They diagnosed him with swimmers ear. I felt uneasy about the diagnosis and the next morning took him to the pediatrician. His pediatrician diagnosed him with an ear infection and started him on amoxicillin.

During the visit, he had a student with him. He mentioned to the student that his spleen was low, but indicated it could be due to his infection. After 24 hours, the fever remained at 104 even with the antibiotic. I knew something was wrong and took him back in the very next day. We were immediately sent over to Children’s Hospital Plano ER where he was diagnosed with pneumonia and leukemia. From there, we were sent down to Children’s Hospital of Dallas where we spent 35 days for induction phase, 10 of those in the ICU and 33 of those 35 days in isolation. 

Beckett handles the treatments fairly well. Being only 4, he has a lot of spunk. He looks forward to the prize cabinet they have (this is for after his port is accessed). They have arts and crafts and volunteers that try to keep him occupied. Steroids are always the hardest, he sleeps 23 out of 24 hours. Methotrexate days (once a week) are hard as the combination of that and his anti fungal medication turn his kin red as if he has a sunburn. His methotrexate burned him to the point his skin was peeling off. He would cry for hours on end.  

Some obstacles we have had to overcome are having to adapt to life changing overnight. We’ve gone from normal trampoline parks, playgrounds, and indoor parks to home life and none of that. We’ve had to stay on top of medications and making sure he doesn’t miss a dose. Our grocery bill has increased by $150 a month due to steroids (they make him hungry).

We have 3 kids total (ages 22 months, 4, and 5). They’ve been split up with different family members when hospitalizations occur. Jobs have been placed on the back burner to tend to treatment. Life has been placed on hold while we overcome this diagnosis. What use to be a normal life has spiraled to a life inside a bubble. School has stopped. Play dates have stopped. Something as simple as playing inside a Chick Fil A has come to a screeching hold. Visitors have to be screened for illness. Cleaning has increased. Our 5 year old has struggled with the attention Beckett has received and often times will do things she knows not to do for attention. We’ve had to adjust to our new normalcy and place vacations on hold. We’ve had to deal with the opinions of others and how they think we should treat our child and rather do what we know is best for him and what the doctors know is best for him. 

When Beckett was diagnosed, he was just shy of 3 years old. He was potty trained. He was running and jumping. After diagnosis, He regressed with potty training. He lost the ability to walk. We had the conversations with doctors about him not making it. We watched him fight for his life in ICU to breathe. We watched his older sister struggle with losing her best friend.

Today, Beckett just celebrated his 4th birthday. He learned to re-walk twice and is now bouncing off the walls. He has life in him. He’s gained back 4 of the 10 lbs he lost during the first year of treatment. He just re-potty trained. Right now, he may not be in the best condition, but he’s thriving. We’ve had a lot of support from complete strangers. 

Hope session by Meredith Joyce Photography | Facebook | Instagram