It’s hard asking for help.. but we really need it! This has been the hardest 2 years of my life, and I’m sure my whole family feels the same.
In October 2021 our 4yr old son got strep throat and a double ear infection. He was in intense pain and we felt horrible for him. We got him started on his antibiotics and hoped his two younger siblings wouldn’t catch it. Sure enough his sister got a fever the next day so I took her in to be checked. She tested positive for strep and the doctor was about to send us out the door with a script when I thought to ask about a new rash that had just come up…
The whole appointment changed in that moment and we were being rushed next door to the children’s hospital and told we would be staying overnight. I was confused and in shock. I had no idea what they were looking for or what was going on. I had to call my husband to inform him our daughters normal doctor appointment had somehow turned into an emergent hospital stay.
We were terrified for what could be wrong with our daughter and also anxious to have our family possibly split up again due to covid restrictions as my 3 month old son and I had just recently been discharged as he was born prematurely with complications and I suffered a stroke a few days after my c-section from stress over his condition in the NICU.
At this point our daughter had been at the hospital all day with lots of labs and imaging being done. No one would tell me what they were looking for and just that I needed to reach out to her doctor. I called and called .. his receptionist was probably getting annoyed and I knew he was in appointments but the worry for my baby was driving me sick. Finally after what felt like the longest day of my life.. the Doctor called and asked if I was sitting down.. I immediately asked what was wrong with my baby He told me they were still waiting on some tests to come back. So I told him I needed to know what they were looking for. He asked me again if I was sitting down.. “We are looking for cancer in her blood, we are looking for Leukemia.” My gut sank and I couldn’t hear anything but my heart beating out of my chest even though it felt like it was stuck in my throat.. I didn’t say anything back I just dropped the phone and sank down the wall I was standing next to.. In my experience doctors don’t tell you the worst case scenarios unless they are almost positive.. and at this point small things that we and the doctors had written off as teething and reaction from her one year shots seemed to be adding up with this diagnosis. I couldn’t even say the words to my husband over the phone and had him come up to the hospital.
Isabella was diagnosed the next morning. I will never forget that moment. The fear of loosing her and all the chemo and suffering she would have to endure to win this battle. The guilt that somehow it was my fault and my genes that caused this as I myself have so many autoimmune diseases and health issues. Her dad and I both cried and pleaded with God.. we just wanted to be able to take it from her and take it on ourselves. How is it fair for a 13 month old baby to be diagnosed with something so horrible?! I still can hardly say the word cancer.
We were blessed to get her a spot at St. Jude research hospital in Memphis, TN. to start her Intensive chemo treatments. We were so thankful as they have the highest survival success rates and it’s the only place in the world that she would be allowed to leave her hospital room and go off campus for any part of that first 90 days of her treatment. The only down side to this.. Due to Covid restrictions siblings were not allowed at the Ronald McDonald house. Luckily there was a loophole for our 3 month old as he was under a year old and nursing.. but our just turned 4yr old son had to stay behind with family. He didn’t understand and was only able to come visit his sister once in that 3 month phase of treatment. My husband and I tried to take turns visiting him when we could as we lived in Tulsa,OK at the time and it was only a 7hr drive to St Jude. But it was hard on either of us to be alone in Memphis as her care was so intensive and that 7hr drive seemed so much longer when so sleep deprived.
We were so excited when Isabella got to leave Memphis right before Christmas and that we could all be reunited! At this point my family had been split up for most of July-December of 2021.
Unfortunately my husband had not been able to work during this intensive part of her treatment and we lost our home. So we sold most of our belongings and moved our family from Tulsa,OK to Charlotte,NC to try and stay with St Jude and have families help nearby. We got a travel trailer as we couldn’t afford anything else at this point and just wanted to be able to all stay together. Even tho Isabella was still a St Jude patient, she was no longer in a children’s hospital and we started having some issues with her care because of it.
So we ended up moving our family once again to get Isabella the best care possible. This time at Nemours & Wolfson’s Children’s Hospital in Jacksonville, FL as they are also one of the best children’s hospitals in the states and St Jude referred us directly.
So now we are in the Jacksonville area. Our daughter has been hospitalized countless times since with two of those stays lasting longer than two weeks each and most of them being about a week long. We have some family here but no one that can watch our boys enough for my husband to work away from home or even full time. So again I don’t want to ask for help but we are in a position that we really need it.
Please share our story and gofundme page to help our family get through this tragic time & Please say a prayer tonight for our daughter Isabella as she still has a long fight ahead. & follow her page for daily updates and prayer requests.
Thank you again & God bless
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Organizer
Janis Bett
Organizer
Jacksonville, FL