Tucker Jones

2019 started off normal. Our family recently grew from 3 to 4 in
November of 2018 so we were enjoying our newest addition. Tucker,
2.5 years old, was going to an in-home daycare. Mom, Morgan, had
gone back to work after maternity leave and Dad, Ian, worked as a heavy
equipment operator. Tucker was a very spunky, curious, happy, and
most of all, healthy boy. He loved to play with his cousins and go
fishing and play outside. His little brother, Everett, was his new best
At the end of May of 2019 we started noticing some changes. Tucker
was tired, cranky, irritable. He started developing bruises on his arms,
legs, abdomen, face, and along his spine on his back. I had begun taking
pictures over a matter of a few weeks. Those bruises just kept
progressing. My sweet, adorable boy ended up looking like someone had
thrown his little body up against a wall. He had what I thought were
freckles, they were petechial. Little broken blood vessels all over his
June 1 st was my best friend’s wedding. Tucker was supposed to walk the
rings down the aisle. He was so excited about his big job leading up to
that day. But that day he just couldn’t. He was so tired. He was so
uninterested in anything. He was so sick and we didn’t even know.
By June 2 nd I was very concerned. I had been Google-ing ‘unexplained
toddler bruising’ more times than I could count. The first thing that pops
up when you Google that is leukemia or a blood disorder, like leukemia.
My Mama heart was so hoping for a blood disorder. June 3 rd was a
Monday, I had went to work that day but I just couldn’t shake that

something was wrong with my boy. I called his pediatricians office that
morning and was put through to a nurse. I explained his symptoms and
requested that we have an appointment made to have a blood test done.
The nurse had the audacity to “thank me” for making a report but she
wouldn’t schedule a blood test until the doctor knew what was going on.
Insinuating that my son had been beaten, she continued to refuse my
concern for what was actually going on. After an argument I requested
that I speak with my sons doctor directly. She got us in that hour.
We went into the pediatricians office for him to get looked at. I could
barely hold myself together. Our doctor came in and not even five
minutes after looking at him said, “There is something not right. I don’t
know if it’s cancer, but we need to get a blood test done right away.” So
we headed to our childrens hospital. All of my family and friends were
telling me that it was going to be okay, that he didn’t have cancer
because that is just not what happens! You can’t even fathom that your
child could have something that older people get.
His blood results came back within a few hours. Admitting from the
hospital actually called me to tell us our room wasn’t ready yet before
the doctor even got to call me with the results. I hung up with them
immediately and called her. My mom was at my house with the boys,
playing while I awaited this phone call. I remember the doctor saying,
“Tucker does have leukemia. I’m not sure what kind and I don’t know
how bad this is. But he needs to get to OSF Childrens right now to get
blood work and an xray to check for a mass in his lungs.”
After that phone call I threw up every single thing that was in my
stomach that day. I called my (now)husband to tell him. He was 2 hours
away at work. I could hear the disbelief in his voice. The panic, the
horrific thoughts running through his mind were also running through
mine. I then walked into my home, looked at my two precious boys, and

pulled my Mom away to tell her what the doctor said. She already knew
by the tears on my face. My sister came to drive me and Tucker to the
hospital. I was not able to drive, speak, or cry. I hugged my 4.5 month
old and kissed him so hard. I didn’t know when I was going to get to see
him again.
After being admitted to our peds HEM/ONC floor Tucker received
blood, his hemoglobin was at a 5. It’s supposed to be above 11. He
received a bone marrow aspiration, which told us that his bone marrow
was 93% filled with leukemia. It had invaded his little body. The x-ray
came back with no mass, thank God. He received a spinal tap to make
sure there were no leukemia cells hiding in his spinal fluid, there was
none there, thank God again. He was considered Low Risk at the
beginning of treatment based on these metrics and his age.
After talking with our oncologist and the team at OSF, it was decided
that the best course of treatment for our guy was to go to Memphis to St.
Jude Children’s Research Hospital. Tucker and I loaded up in an
ambulance and made the 7 hour drive with Dad following behind.
We arrived in Memphis in the middle of the night. The hospital was lit
up but I didn’t realize how huge it was until weeks after. Tucker was
inpatient for 1 week when we arrived. His central line or port/Buddy was
put in so that he did not have to have an IV. Central lines are placed
because of the amount of medicine that they have to receive. For the first
2 weeks after being inpatient we stayed at Ronald McDonald House. We
would end up staying there for 9.5 weeks. Tucker reached remission in
August of 2019. Treatment was hard and grueling. NOTHING about
cancer treatment is easy, but having a toddler who really has no idea
what is going on makes things ten times harder. He did not walk until
about 3 weeks after initial diagnosis. His legs hurt him so bad. He was
almost potty trained before arriving, he regressed. We had clinic 2-4

times a week while we were in Memphis. He was on 6 different types of
chemo. Multiple other medications for preventative purposes and pain.
He had two allergic reactions happen. But he was in remission, and
that’s what mattered!
We returned home in August of 2019. We were so ready to come home!
Our affiliate hospital was luckily only 25 minutes away from us so we
could continue treatment.
Not long after returning home and finally getting back to our new
normal, COVID happened. Our weeks between counts dwindled to once
a month. Chemo was still given, some procedures needed to be pushed.
Our every three month visits to Memphis were held for a year. But
despite this new navigating we had to endure – Tucker was still
TOUGH. We called him TuckerTough for a reason.
Maintenance phase of treatment was 120 weeks. In that 120 weeks he
started and finished prek 3. He is now in prek 4. What was supposed to
be the easiest phase of treatment was probably the hardest. Nothing
about Tucker was ever textbook. His health would throw us all sorts of
curve balls. He was hospitalized for sickness a handful of times, but the
worst was CMV. That would take us down a long stretch of chemo hold
and our first run in with infectious disease. But he was SO much
healthier. We were slowly getting our boy back.
Since June of 2019 we have tried to live every single day like it’s our
last. We celebrated milestones. 1 year since diagnosis date we had a
“party” (COVID) at home with just us. We ate all his favorite foods,
made a cake, had an ice truck come to our small town neighborhood. 2
years since diagnosis date we celebrated with his first Tucker’s
Lemonade Stand for St. Jude & Alex’s Lemonade Stand Fund. We
raised more than $3000! That September for his 5 th birthday – he got his

Make-A-Wish! He originally asked for a trip to Disney World but,
COVID, so he asked for a camper so we could go camping! He loves it!
No Mo Chemo was celebrated by a much deserved trip to the beach for
both our tough guys!
Throughout this journey we have learned so much. Hope, strength,
perseverance. We have gained so many friends that we call family but
unfortunately have had to say goodbye more times than I could count.
Tucker has encountered grief in his short five years. All of these kids do.
Our family encountered loss – finances, careers. These fighters and their
families deserve SO much more than what they are being given. 4% of
national funding from the National Cancer Institute is NOT enough!
There is not enough support given to families during or after treatment.
Childhood cancer is not rare. It can happen to anyone.

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