October was about Jennifer. Thank you for that. It was this mothers hope that my daughter could motivate and inspire .. “forTHEMbecauseofher” but I have so many more children that make up my “her” The kids that motivate and inspire me to fight for a cure. Kids that make me want to be a better mom in every way..
This month we are honored to introduce you (both through blogs and social media) to just a few of these children.
Allow me to introduce Carmen and Ty. Carmen is one of our board members and a woman I am proud to call my friend and Ty…. Ty is simply incredible.
“But your son is all better now….. because he doesn’t have cancer anymore right?”
I can’t tell you how many times I have heard this phrase or something similar to it after people find out about my son’s battle with cancer. While I totally understand why someone would think/say this, it actually could not be further from the truth.
I like to say my son is “surviving cancer” when I describe Ty to people who never met him. Cancer doesn’t define my son but so much of what he is going through now, is what the effects of the cancer treatment did to him. So, I always feel compelled to let people know about his past so they can understand and be more aware of some of his limitations.
First, let me tell you a little about my son, aka my hero. Ty was diagnosed with stage 4 neuroblastoma (NB) at 16 months old in 2008. Neuroblastoma is considered a very aggressive childhood cancer that usually is diagnosed after it has spread throughout the body. When his oncologist told us that Ty had a 30% chance of survival for 5 years… I immediately felt sick to my stomach… I could not believe it.
Against our oncologist advice, I immediately searched for neuroblastoma stories on the internet. I needed to know that there were survivors out there… that the prognosis she was telling me was wrong. Of course our oncologist was right. I regretted searching because of what I did not find…which was Hope.
I was discouraged. There were so many “neuroblastoma angels”… videos, pictures and stories of so many children dying from neuroblastoma. I was horrified, scared and felt so alone. I finally found a few “success” stories and attempted to contact these families for support in what was becoming an absolute nightmare for my husband Scott and I.
But, as Ty’s oncologist told us, every child is different and to not focus on the statistics.
Neuroblastoma is a cancer that has one of the most aggressive forms of treatment. Ty endured 7 rounds of high does chemo (which required us to remain inpatient for 5 days each month), 27 rounds of radiation, tumor resection, stem cell transplant (which was the absolutely the hardest thing he had to endure in his treatment), and completed 9 rounds of an antibodies called 3F8, which was only offered at Sloan Kettering Cancer Center in New York City. We flew coast to coast for 2 years so Ty could receive this life saving treatment and to give him “better odds” to beat his cancer.
Unfortunately, Ty still had disease showing in his left tibia, even after all the treatment. So our oncologist recommended Ty to receive “cryosurgery,” an experimental surgery on his lower left leg, which he believed would get rid of the remaining cancer. The procedure/surgery involved a small incision made in his left leg and injecting liquid nitrogen in the area, to freeze the disease. This process is commonly used in bone cancers but not on neuroblastoma. Ty was the third neuroblastoma child at Sloan Kettering Hospital to receive this procedure which proved to be was successful.
On April 10, 2010, we finally received the news we were waiting for after 2 years of treatment… Ty was finally declared no evidence of disease or “NED” as we say in the cancer world.
Through it all, we became his biggest advocates… ensuring Ty was receiving the “correct” dose of chemo at times. We reviewed every order, chemo, prescription and anything else pertaining to his treatment. We were now “the experts” in neuroblastoma, banding with other NB parents from all over the country, to learn more about this disease. I knew of all upcoming clinical trials, constantly researching “just in case” Ty relapsed.
We became his nurses, learning how to care for his broviac. A Broviac is a catheter that can be inserted in one of the central veins, providing long term intravenous access. These types of catheters are used to allow repeated administration of IV drugs without needing to re-puncture the vein each time. We learned how to “flush” his lines with heparin and saline daily, injected his shots, find creative ways for him to “take” his medicine ( hide it in pudding, applesauce or at times, force feed it ) He needed it so we had to do what we needed to do to get him to take it.
I held him every time while he was “put to sleep” with general anesthesia, he hated getting anesthesia. I hated leaving him when he finally was sedated. I cried every time.
Ty was in 2 years of non-stop treatment. As Ty received each round of high dose chemo, radiation, transplant and antibodies…. we had to sign waivers acknowledging that these procedures/ treatments were going to come with a hefty cost. We were gambling with his hearing, fertility, developmental issues, kidney toxicity, congestive heart failure, pulmonary issues, secondary cancers, growth issues… even death.
But we signed each consent… every time….because your focus is ONLY to save your child’s life…. the side effects/ late effects… does not matter.
My son is considered one of the lucky ones… he made it through treatment and has made it 5 years NED with no relapse, a real milestone in the neuroblastoma world. BUT…. our “luck” has come with a real big cost…..
Ty is now 8 years old and even though has remained NED for the past 5 years, he is now dealing with the “late effects” of the cancer treatment. Ironically, the toxic treatment used to save my son’s life, is now responsible for serious health issues. Currently, he suffers from high frequency hearing loss, 8 adult teeth never formed, and has one leg is slow growing due to all the radiation he had to endure. He has a greater chance to develop a secondary cancer; such as leukemia in the future (Due to all the chemo he received), as well as chronic health conditions and possible fertility issues.
Most recently he had major surgery in New York this past summer, to correct the deformity of his left leg caused by high doses of radiation used to fight the cancer. It was a very invasive surgery and Ty remained in the hospital for 10 days as he was in a lot of pain. The surgery required cutting Ty’s leg in two places to basically trick the leg to “regrow” new bone. This was also done to help with the process of “lengthening” his left leg, as it is very slow growing due to the radiation hitting his growth plate. By having one leg shorter than the other, this began to cause his back to hurt. He now has to an “external fixator” device on his left leg. The frame itself is rather large and Ty is very self-conscious about it. Imagine having 6 large metal pins going INTO YOUR LEG! It is quite jarring to look at and even after all these months, I still get a little queasy looking at the pins.
While in New York, Scott was in charge of “turning” the knobs on the brace, which basically was lengthening his leg with each turn. The more turns done, the more pain Ty felt. He was in excruciating amount of pain each time. I hated it, Ty hated it and he was becoming depressed. We tried to do fun things while in the city to keep him busy but we were also limited in what he could do. He was in a wheelchair for the majority of the time there and later began to use crutches.
Even though the frame is only temporary (has to wear it for 4-5 months), he does not like it…. Who would? He just wants to “be a normal kid” again and play his favorite sport in the world, which is soccer. While Ty recovered from surgery, we had to remain in New York for the entire summer so he could be closely monitored by his surgeon and start intensive physical and occupational therapy 3-4 times a week. Due to the intense pain, he was taking OxyContin and oxycodone. Heavy duty narcotics for an adult and my 8 year old was taking them daily to maintain his pain!
We (his daddy, myself and Ty) were away from my 4- year -old twin girls (Siena and Bella) for 2 months! Can you imagine being away from your children while caring for your other child thousands of miles away? Being away from my girls was so hard… especially for the girls and Ty. They have such a good relationship with each other and Ty is truly the best big brother to them. We would face time and to hear my girls continue to ask we to come home just broke my heart. But as parents, we decided we both needed to be with Ty during this time.
Ty is now home, back in school and doing much better than he was in New York. He continues to have physical therapy and is no longer taking any pain medication. He has the support of his friends in school, his family and all the #teamty supporters who continue to cheer him on.
There is a high probability he will need another “leg lengthening” procedure when he is 13-14 years old. It really depends on how much he grows overall and it will be up to Ty at that point to make the decision. If Ty does not want to do this procedure again, we could stop the growth on the right leg. But then he wouldn’t grow anymore. Another crappy decision to make in a few years but I will let Ty decide as he is the one who has to deal with the surgery and physical therapy.
I will never say Ty is “cancer free” as you never know if there is that one neuroblastoma cell still lurking. I cannot tell you how many kids we have personally known who have passed away from this beast. Many of children who died was because their body was just too weak from all the toxicity they received in previous treatment which made them no longer were eligible for further clinical trials. We have seen kids relapse after 5,8,10 years of being NED. No one is safe. But Ty has defied the odds before, so I am HOPING he can beat it again. But I have to admit, whenever Ty mentions his head, stomach or leg hurting…my brain goes into panic mode and think “Is IT (cancer) back?”
We never had the privilege of meeting JLK. I, like so many of you, was drawn to her as Libby is a gifted writer who described Jennifer’s cancer fight with such raw emotion and honesty, which made me want to continue to follow her journey. I don’t know if it was because Jennifer was Ty’s age, because she lived in the same small town as us, or because she was just a special soul….I fell in love with this sweet girl and I told Ty about her. Ty thought she would live… he once told me, “she can live just like me.” I told him “her cancer is even meaner than yours” but I could not tell him at that time that it was a terminal diagnosis.
When Jennifer died, I told Ty before he heard about it from someone else at his school. He seemed okay at first and went about his day with no issues. Not until that evening was when he broke down and said “I don’t want to die!” and burst into tears. I immediately replied “you won’t die… your cancer was different than hers.” He then asked “Why did JLK die?” I told him I did not know but she was in Heaven where she could be anything she wanted to be.
I know as Ty gets older, he will have more questions about his cancer, death and his friends who are no longer here. I also know chances of Ty developing serious heart issues, such a congestive heart failure, developmental issues (will he be “slower” in school because of the chemo??) and/or getting diagnosed with a secondary cancer such as leukemia, is also high….which scares the shit out of me.
But…… Ty is still here with us. I thank God every day for that.
Pediatric cancer is a beast… but childhood cancer foundations like Unravel are truly making a difference. Libby and Tony have turned the most unimaginable, heartbreaking tragedy into something that IS making a difference in pediatric cancer research. I am so honored and proud to be part of this dedicated organization.