Owen S.
Missouri
Birth Date - July 28, 2014
Diagnosis - Pre-B ALL
Theme: Star Wars
Due Date: 4/1/19
Owen's Story
In February 2018 Owen was in the hospital for a bowel obstruction. While there many labs were drawn. The doctors told us he was anemic because of the low hemoglobin count. We treated him with iron for 3 months and then went back for a follow up visit. Despite being on iron supplements, his hemoglobin was still really low. The doctors still thought it was just uncontrollable anemia. They thought this because the blood smear was text book anemia under a microscope. I pushed for more and got a referral to peds hem/onc ... not because they suspected cancer, but because they'd be better equipped to handle severe anemia.
It was only one week to get in to see hem/onc and in that time his condition declined. He couldn't walk or eat. He ran fevers and cried in pain at the slightest touch of his skin. At the appointment more labs were ordered. The doctor told us he was worried about the "worst case scenario". He called us from his cell phone at 8:00 that same night to tell us his hemoglobin was still dropping and to get to the hospital right away! The next day there was an ultrasound that showed enlarged liver and spleen and well as fluid in the abdominal cavity. X-rays showed swelling in the entire abdomen. A bone marrow biopsy was scheduled for the next day. The doctor wasn't even able to get an aspiration from the bone because they were so dense. He was straight with us and said that usually happens when the bone marrow is full of disease. He didn't need the official pathology results to know he had leukemia. He only needed them in order to classify what type. Three hours later it was officially Pre-B Cell ALL. The next day was surgery to place a Broviac, and to have his first lumbar puncture and IT chemo. Luckily there was no disease in his CSF!
Since then it's been a whirlwind. He's finished with the first three phases of treatment and is now in the 4th, hardest phase. Countless IV chemos, 14 LPs, 2 bone marrow biopsies, pokes, nausea, the works. He's had several admissions since the beginning. A C-diff scare got us 5 days inpatient, meningitis got us 10 more, what they thought (and later ruled out) was pneumonia got us 2. Most recently he had a mild allergic reaction to peg which is really scary. He had a LP result that left us thinking he'd relapsed into his CSF. Luckily that also proved, after further testing, to not be the case. He's also had some mouth sores and mild neuropathy in his feet. Many hiccups along the way but overall he's doing as well as could be expected. Only one long bout of neutropenic concerns.
He misses his friends and teacher at preschool. He especially misses spending all day everyday with his little brother at school. We're doing our best to make sure they both get our attention and love. But it's hard on both of them to see each other so much less than they used to. Hopefully Owen will be back at school in the early spring. We also hope he can get a port to replace the Broviac after he's done with frontline treatments. He won't be done until November of 2021 if all continues to go well. That will put him in second grade and will have been half his life at that point!
"We picked up the quilt today! He's so in love with it!"
