Childhood Cancer Warrior: Deni
As told by her mother
Deni has always been the most kind and generous child I have ever known. She does not hold grudges or judge those that may have wronged her or are simply different from her. She was always considerate of others and very helpful with chores and cooking. She loved to learn. She was simply beautiful throughout, and still is. So, for her to be the one to receive this diagnosis was devastating to everyone. It was news that would change our lives forever, something that we all wished we could take from her.
Her journey started while we were traveling. We wanted all of our children to experience the world and were not even close to being finished. This has since been halted. She started having neck pain, similar to a “stiff neck” or “crick-in-the-neck” for a few weeks leading up to her diagnosis. Her gait had changed as a result from her neck pain, but by the time she needed help to take a shower and her left arm started tingling, I knew it was more than what it had appeared to be.
I took her to the local Emergency Room on May 17, 2023 where they ordered a CT scan of her cervical spine. After the CT scan was looked over, the “C” word was mentioned for the first time. There hadn’t been any tests confirming this, but it was very much a tumor of large proportion. Anxiety and fear consumed my body as I tried to hide every tear from my sweet beautiful baby girl. My perceptive Deni, at eight years old, knew that something was very wrong. Tears flowed as question after question expelled from Deni’s mouth, and Dixie, Deni’s 6-year-old sister, witnessed it all. We gathered up our things that day and awaited transportation to New Orleans Children’s Hospital. Deni and I rode in the ambulance while her stepfather and siblings packed and drove the four and a half hours behind us.
Once we arrived at New Orleans Children’s Hospital, things went downhill. We all stayed with her during this time. She started having seizures with convulsions and hallucinations along with other complications. This was all new and scared every one of us. She was then moved to the pediatric ICU floor. She stayed in the ICU for the remainder of her time there. Dr. Volk III and Dr. Roberts suggested that Deni needed a biopsy, but where the tumor was located, anything could happen if they tried anything else. Dr. Volk showed me Deni’s CT scans and MRIs where she virtually had no vertebrae in certain areas. It was all tumor. I was also shown a scan of her lungs where you could see many small spots all throughout. There were so many. I tried to stay as calm as I could, but the tears just kept coming. After viewing all of the scans they went over the complications that Deni may have if they performed a biopsy and resection on her tumor. We were told that she would never have her baseline range of motion, that they would have to open her “protective flap” to reach the area (this can cause issues the older she gets), and that there could be irreversible spinal damage. We agreed to the surgery. I mean, what other option did we have? May 21, 2023 was the biopsy of the tumor in her cervical vertebral area, and a partial debulking of the tumor was performed on Deni’s cervical spine just 9 days later. Dr. Volk III did not know if the nodules on Deni’s lungs were the same thing, so they also biopsied one of the many nodules on her lungs. We could do nothing but sit, worry, pray, and appreciate the time God gave us with our beautiful girl.
Not knowing if she wouldn’t make it out of surgery or would have permanent damage scared us to death, but God wrapped her in his protection blanket. Not being able to physically help her killed me inside, but I took comfort knowing that she had God on her side. We prayed every day that we were there. As I waited for what seemed like forever, I thanked God for giving us this time with her. She really is a blessing from Him! As I was laying back on the bench looking up at the beautiful tree in the front of the hospital, all I could do is admire all of the blessings that God had given us. He really is an awesome and almighty God, and none of us could have made it this far without his graciousness and mercy! It’s almost as if he spoke right into my soul assuring me that everything was going to be okay. A little while later, we got the call from the nurse in the OR, that Deni was safe and out of surgery.
After the surgery was finished, they confirmed the worst, metastatic Chordoma. We had never heard of this cancer, and apparently, not many had as it is very rare. It is a bone cancer that usually grows very slowly, and is not typically diagnosed until the ages of 40 to 60. When we are in utero, what will soon become our back bone is initially a rod called a notochord. As we grow, the notochord is replaced by ossified vertebrae. Her chances of ever getting this diagnosis were one in a million. Only 5 percent of the million are diagnosed in children, and most of those cases aren’t metastatic.
After her cervical tumor was partially debulked, Deni’s right side of her body weakened and at some points, quit working all together. She couldn’t get comfortable but worked every day with PT and OT as we waited for insurance to approve her transfer to Texas Children’s Hospital. Dr. Volk III and Dr. Roberts, the wonderful neurosurgeons at New Orleans Children’s Hospital, informed us that TCH and MD Anderson were her best options as this cancer rarely responds to chemotherapy and only responds to proton beam therapy and surgery. We had ventured into the unknown, and we were all nervous, but we were also grateful for everything New Orleans Children’s Hospital and God had done for her. My baby girl, my sweet and beautiful 8 year old daughter could have very much died if it weren’t for them debulking her tumor before heading to a hospital that could help her the way that she needed to be helped.
Deni was flown to Texas Children’s Hospital on June 9, 2023 where she would start with more scans, artery embolism, and a three-day extensive resection surgery with spinal fusion. The spinal fusion consisted not only of both rods and screws in the back of her neck, but also a bone fusion in the front using one of her own ribs. She had to be under anesthesia for 3 days during this operation. Although, she did wake up slightly trying to talk to me while she was still intubated. That alone frightened me to my core. I tried to understand what she was saying. So, I started reading her lips. She made out the words hungry and chicken. This girl wanted some Popeye’s spicy chicken. She had no bones in her neck, but she wanted some chicken anyways. Deni loves some Popeye’s chicken and ate it for most of her stay in the previous hospital. Once Dr. Aldave and Dr. Bauer was finished with this excruciating 3 day surgery, they rescanned her just to make sure that everything looked good, and it seemed as if everything was wonderful. Deni started getting stronger, she gained mobility on the right side of her body again, and she was finally starting to WALK! The excitement was too much to handle. The team at TCH also retested Deni with the tumor that they had resected. It was confirmed that it was a poorly differentiated chordoma which is the most aggressive kind. This is when oncology came to talk to us about the dreaded chemotherapy.
Chordomas do not usually respond to chemo, but the kind that she has does. I never wanted to say yes to this, but we had no other choice. Her only other treatment option at that time was proton radiation therapy at MD Anderson, and they could not start radiation until Deni was halo free. This did not leave many options, and we agreed to the chemotherapy plan consisting of intense chemo drugs including cyclophosphamide, doxorubicin or “the red devil”, and vincristine. However, barely 3 weeks after her full resection and before chemo started, Deni lost all feeling in her left arm. She had lost mobility in her left arm as well as swelling. She was given another MRI, and it showed that her tumor had grown back again and was compressing her spine even more than it was in Louisiana. She was rushed into the OR for another full resection. Terror struck our family once again. Once again, we were waiting… patiently waiting for a team to finish debulking Deni’s tumor. Another list of complications given, another form to sign, etc. Four times my poor baby’s neck had to be cut open, but it had to happen. Her fourth resection seemed to have been the best resection by far. Feeling and mobility came back to her arm, and the swelling went down. It was amazing. Not one time did Dr. Aldave injure her spinal cord. This amazing surgeon once again saved my baby’s life, and she was even able to leave for a little bit before starting the dreaded chemotherapy.
During that time, Deni had a blast. She got to choose where we ate as a celebration for getting out of the hospital. She chose IHOP. There, she joked around saying that the Joker was on the loose in the bottom of her cup, and she had to get him. She couldn’t walk very long, but she got to do enough. She was able to play outside in the Ronald McDonald House’s back yard. She played a little basketball, pushed her wheelchair around, and just got to be a kid in the sun. This alone was so refreshing. For two months, my little girl was cooped up in a hospital room, and having to sleep in a hospital bed.
On July 18, 2023, her first round of chemotherapy started. It didn’t take long for Deni’s hair to start falling out. I remember slightly detangling her hair and it just came out in clumps. Hair is the one thing Deni likes to keep “girly.” I tried to hide my emotions, but Deni being Deni knew exactly what was happening. She used her humor to deflect from both of our sadness. She even used the hair that fell out as a toupée. We shaved our heads on the same day. After about her second cycle, she had lost all hair on her head and eyebrows. She hated taking pictures, but she stayed her beautiful and caring self.
The nausea after each round was horrible, but she took each poison like a champ. In fact, she only had to have one blood and one platelet transfusion during her entire time of chemo. This was after her sixth round. Her levels were always just good enough to continue without transfusions. Her nausea affected her appetite and she went from 80 pounds after getting her surgeries to 60 pounds. She was nearly skin and bones. She stopped eating so many vegetables and chicken, and started eating shrimp. This was when she would actually eat.
Deni’s chemotherapy was paused about half-way through her cycles as she started seizing. She was on the oncology floor and had just finished her last chemo medicine. It wasn’t too long before she would have been able to be discharged. I had gone downstairs to pick up our dinner order, and as soon as I walked back in the door she started seizing. Her nurse called for a response team, and they sent her to the ICU. In the midst of her clustering seizures, she started panicking and wanted no one but her mom. She had no idea what was going on and the fear of everyone crowding around just reminded her of her time in New Orleans where she seized and struggled regularly. They gave her Ativan and Keppra to stop the seizures, and it eventually started working. When she was in between seizures, she would talk to those around her. She made sure her “mama bear” was near at all times. Her step father was out of state working at this time, but he stopped everything to get back asap. She was held for observation that night and was released that next afternoon. About two or so weeks later it was back to business, and she started her next cycle of chemo. Deni has been back to the ER only one time for seizures since then. Once all six of her cycles were finished, it was time to go to MD Anderson for her proton beam radiation therapy. This did not bother her hardly at all. She did the simulations and was ready. She would jump on the table just to get it over with. It didn’t bother her as bad as chemotherapy did. I honestly don’t think anything bothered her as bad as chemo. She still has some problems with swallowing, though. While getting radiation, she would sometimes get a sore throat, but nothing too serious.
Now, it’s time for scans all over again, but she is another step closer to getting this at least somewhat behind her.
