In 2018, our daughter Abby (who was 4 at the time) would occasionally tell us that her head hurt. Thinking she was experiencing something like a head rush when standing up, we ended up taking her to the pediatrician to explain what was happening and get their advice, which was to just monitor it. Not having cancer even remotely in our mind, it was the advice most would expect to get and we left thinking not much of it. Towards the end of that summer, the occasional complaint became more frequent. Then it got to the point where when Abby would complain, she would often be in a daze or would stop what she was doing and lie down, and this was when we knew something was not right.
To start down the path of finding out what was wrong we made an appointment with a pediatric cardiologist. After a few tests and an exam there were no cardio issues found, which was of course great news, but it left us with more questions than we walked in with. When we left that cardiology appointment, we drove over to a nearby outdoor shopping area where it just so happened that CHOA had a tent set up and were handing out information and some free things for kids. There we met two nurses, and eventually we got into a conversation about Abby and were describing her symptoms to them. It was then that one of the nurses told us that we should take her to the Emergency Department the next time she complained.
It wasn’t but the next day that Abby was playing at her grandparents house and had another episode of her head hurting. This time it was severe and following the nurse’s advice we took her straight to Scottish Rite and told them that we wanted some sort of imaging done before we went back home. The doctors agreed to a CT scan, and about two hours later the neurosurgeon walked into our small triage room with his whole clinical team and told us the unimaginable… Abby had a high-grade brain cancer. We were completely overwhelmed, and we were completely devastated.
The tumor was so large that it was causing hydrocephalus (a buildup of pressure in the skull, which was the cause of her headaches) and emergency surgery was necessary to remove it. Less than 48 hours from receiving this diagnosis, we sent our precious little girl through the doors of the OR, not knowing that we wouldn’t hear her sweet little voice again for a month. The surgery itself was a huge success with 99% of the tumor being removed, but her recovery from the magnitude of this surgery was extremely slow. It took Abby a couple days just to wake up, and when she finally did, we realized that she wouldn’t be able to walk, talk or even take a sip of water for weeks. We knew this surgery saved her life, but we were looking at a huge mountain in front of us.
After initial recovery in the PICU and then the neuro unit for a couple weeks, we started inpatient rehab where Abby received intensive physical, occupational and speech therapy to help her try to regain some normal functions again. She made great progress thanks to an amazing team who were with us every step of the way, literally. After a month in rehab, we moved to the oncology unit and started the first of what would be three rounds of high dose chemo, followed by a bone marrow transplant. This was one of the most intense chemo protocols you can do and it was very difficult to say the least, but after almost 6 months of living in the hospital we got through it all and it gave Abby 4 years of complete remission.
In January 2023 after a routine MRI, we got a call from our oncologist. She told us that the radiologist spotted a small area at the original tumor site that was very suspicious of recurrence. Just as it felt like we were finally getting back to a ‘normal’ life after almost five years of living in this world, we were thrown straight back into it… like a 5-year timer reset in a matter of 60 seconds. Abby had to have another brain surgery to biopsy and remove this new mass. It did turn out to be the same cancer, so within a couple weeks post-surgery we went right into 6 weeks of radiation therapy. Thankfully we now have the Proton center where we live which is a huge blessing, but nonetheless it wasn’t easy to take Abby there every day for 6 weeks.
Our warrior finally got through treatment and rang the bell, for the second time. It was a triumphant moment, but it was also heartbreaking because Abby’s hair was gone again, and she missed half of 3rd grade which she loved so much, and she will have side effects from the radiation for the rest of her life. Nonetheless, our hearts are completely full of gratitude because we’ve seen God do miraculous things on this journey we’ve been on, and we thank Jesus literally every day for making a way through that valley for us and giving us the gift of clear scans to this day.
One of the hardest things a parent could ever experience is to watch such an innocent child go through something as horrible as cancer, and cancer treatment. There is a lot of money that the government and private companies pour into cancer research but the percentage that goes towards pediatric cancer is abysmal, which is about around 4%. We need all the help we can possibly get to raise money for research and race to find true cures for these precious children who have beautiful lives to be lived
