Leo was diagnosed with B-Cell Acute Lymphoblastic Leukemia at the age of 4 on April 17th, 2021.  Leo had been to so many pediatrician appointments for being sick or having a fever, but the fever always went away in a day or so.  He started to have all sorts of stomach issues, was always tired and fatigued, and started to have bruises all over his legs. I finally got him an appointment with a specialist, who took one look at him and said he needs blood work asap.  The very next day I took Leo for blood work, Children’s Hospital called me a few hours later saying that I need to bring him in within the hour and if I couldn’t get him there that quickly to call 911.  My world came crashing down when hours later I was told Leo has cancer, more specifically some kind of Leukemia. The doctor spent time making drawing & diagrams for me to help me understand what was going on inside Leo’s body.

We were admitted to the oncology floor for the next 30 days.  I remember not having a single thing other than what we were wearing, never realizing we wouldn’t be going home.  The world we knew stopped in that moment, my beautiful boy became a statistic, he was poked with so many needles, so many tests and locked inside the 4 walls of a hospital room.  Leo began treatment the next day, he had a port placed in his chest, he had a spinal tap with chemo injected in his spine, he started IV chemotherapy and steroids. That first month seems like a blur now, but in that month I watch my little boy change into someone I didn’t recognize.  He gained so much weight from the steroids, he was so angry, so sick, and just not the little boy I knew.  Being stuck in the hospital so close to Covid times was also so mentally draining for both of us, the playrooms were shut down, they did not want you walking the halls, you couldn’t have visitors.  This was so hard for my little social butterfly who thrives on being around kids and friends, this was horrible for him.  I held him down for countless procedures, I held him while he puked, I held him while he was in pain.

The next stage of treatment was weekly chemotherapy, blood draws and spinal taps with sedation. Watching your child be put to sleep over and over again is some of the worst pain as a parent. The hospital became our second home. Leo had plenty of bumps in the road during the Frontline part of treatment but it wasn’t until we reached the Maintenance phase that things became even more difficult.

When Maintenance Chemo started we thought things would calm down, that we’d be able to go back to “normal” but that was not the case for Leo.  Maintenance was comprised of daily oral chemotherapy at home, monthly steroid pulses along with Spinal taps.  Leo was absolutely miserable, the oral chemotherapy was making him incredibly sick.  His team kept increasing his chemo which only made him more sick.  During this time Leo started attending in person kindergarten, which he was thriving in!  Being around kids his age, being able to play and communicate with other kids was a game changer for Leo!  After a few months of Maintenance Leo was puking all the time, wouldn’t eat, was losing weight and just overall felt horrible.  I took my concerns to Leo’s team, especially when his labs showed his liver levels were through the roof. Palliative care stepped in once they saw how miserable Leo was.  They ordered a 6MP Metabolite test to see how Leo was metabolizes his oral chemo.  It turned out Leo was metabolizing his chemo extremely too fast, which means it was going directly to his liver which is why he was so incredibly sick.  He was also not in a therapeutic level of chemo.  With the help of palliative care his chemo regimen was altered and they were able to add an additional medication to help him metabolize the chemo.  They also switched his nausea medications, got him nausea patches as well and a few other medications to help him feel better.  I credit this doctor with giving Leo back his quality of life, this is when I started to see my little boy again!

Leo suffered many setbacks backs during maintenance, more Fever ER visits than I can count.  Countless hospital admissions.  RSV, common cold, bacterial infections, battled sepsis.

Leo spent the last month of treatment inpatient because his bone marrow was beyond tired.  He was neutropenic and not able to attend his final month of kindergarten, which was devastating.  Leo finally took his last chemotherapy on June 23, 2023, and rang the bell in July 2023!!  All Leo asked for when he was done with chemo was a big party with all his friends, swimming and Texas Roadhouse rolls!!  Done, done and done!  During the last year of Leo’s treatment he came up with the idea that he wanted to give a Squishmallow to every kid who was battling cancer like him.  We raised money by having lemonade stands, online fundraisers and many donations.  Leo has since donated 500 squishmallows to the oncology floor at Children’s Hospital! Leo is now followed monthly by his oncology team, he looks forward to spreading awareness for Childhood Cancer and Leukemia and fighting for those that have battled just like him.

Leo has since been diagnosed with LCH (Langerhans cell histiocytosis).  Leo presented with very persistent pain in his lower back in August.  Pain that got to the point he couldn’t bend over, couldn’t even put his socks and shoes on, was limping every time he walked and was overall in horrible pain.  His oncologist ordered a MRI which found “evidence of disease”, this put his team into overdrive to get to the bottom of this.  They admitted Leo to perform a Bone Marrow Aspirate because they believed Leo’s leukemia could be back. After waiting 3 days for those results to come back, I was able to breathe a sigh of relief knowing his Leukemia was in fact still in remission.  This left his doctors struggling to figure out why a healthy 7 year old could barely walk and was in excruciating pain.  They performed a very risky bone biopsy inside Leo’s spine.  In the meantime his team and infectious disease wanted to preventatively treat for a bone infection, they surgerically placed a PICC line in his arm so that I could administer antibiotics at home through his line.  After 2 weeks we finally got the Pathology back that showed aggressive LCH cells, a rare cancer in his spine.

He has since had a full body PetScan, full body bone survey and brain MRI to determine what all is going on.  As of right now these LcH cells are just in his spine and we will wait as long as possible before starting chemo and steroids again.  He will also get repeat PetScan and MRI in 3 months, and for the foreseeable future.  His doctors said this will most likely be a life long diagnosis and he will most likely be on and off chemotherapy and steroids for the rest of his life.  This is absolutely devastating news for me as his mom, to watch him struggle daily knowing I can’t take the pain away is defeating.  Leo also has 2 level 4 Lymph Nodes in his neck that lit up on his PetScan.  These are being monitored with his team at the moment and deciding when they need removed and biopsied.  If the pathology on the lymph nodes shows any LCH cells or anything malignant then he will start chemo ASAP.

Right now Leo is attending 2nd grade and truly loving it.  He’s learning to love reading, loves math and loves just being a kid.  He deserves the absolute world and most importantly to just be a kid!  Something Leo wants more than anything in this world is a dog!  I would love to make that happen for him by providing an Emotional Support dog for him.  The mental toll the last 4 years has taken on Leo is very noticeable, I truly believe a dog would be so beneficial for Leo.