Jules S.

Birth Date - September 15, 2011

Diagnosis - Acute Lymphoblastic Leukemia 

Theme: REALISTIC Dinosaurs  

Due Date: 8/1/18

​Jules' Story

At 3AM on Friday, May 15, 2015, Jules woke up fidgeting. I asked what was wrong, and he said his leg hurt. I thought "growing pains are starting", so I tried massaging and getting him up to walk a bit. This seemed to help but he still couldn't fall asleep. He started whimpering and then crying and writhing around in pain. Now his left hip hurt. He refused ibuprofen and finally fell back asleep around 6AM. When he woke up around 7AM, he had a fever of 101 and was very pale and tired. He said, "I just want to sleep, I'm too tired to eat" when I asked if he wanted breakfast. I thought he'd picked up a 24-hour bug and that it would be gone by the next day. So he kept sleeping and sleeping. He slept most of Friday and Saturday. Only waking up for a few minutes at a time to sip some water or have a few bites of food. Saturday his fever went up to 103.5 and he had slept about 36 hours straight. 

Sunday, he seemed better but was very pale, and his gums looked white. Leukemia crossed my mind based on his symptoms but I still figured it was a bad virus. Fever was 99 and he ate a bit more that day. I thought he was on the mend and would be fine by Monday. Monday morning his temperature was 97. However, he still was very pale and lethargic and something just didn't feel right. So I took him to the pediatrician. She discovered an ear infection and prescribed antibiotics. I asked her to check for anemia because of how tired and pale he was. She did a toe prick in the office and his hemoglobin level came back 7 (normal range 11-13). Because of this, Jules was sent for bloodwork. She said, "I want you to go to the ER. One of my differentials is leukemia and I don't want to wait 3-5 days for the lab to get the blood results. The ER will know within an hour."

Tuesday morning, we met with the 2 resident pediatric oncologists. They had taken a look at Jules' blood cells under the microscope and told us he had leukemia. It looked like either ALL (95% cure rate) or AML (60% cure rate). They needed to do a bone marrow biopsy to find out which. Wednesday morning, the two oncologists arrived with good news. Jules had pre-B ALL (pre-B lymphocyte Acute Lymphoblastic Leukemia) which is the best type to have as it has a 95% cure rate. It is also the most common type in his age group. Treatment would be over 3.5 years.

To say it has been a long road from that day until now would be an understatement. Jules has been receiving chemo for 2 1/2 years, and has endured all the side effects and problems that go with that. He still has a year to go. The theory is that the length of treatment reduces the rate of relapse. But with each chemo cycle comes a lumbar puncture and a week of steroids. Neither of those things are fun for Jules. By the end of treatment, there will be over 20 of each.

We worry about the long term effects of the chemicals and poisons being pumped into his body. He's tired of the clinic visits and hospitals stays. There have been so many of each. We look forward to this being over and his being able to just be a boy again. 

"Jules received the quilt today and was very excited when he saw the dinosaurs. Thank you! It's beautiful work."