One Mom's Heartbreak: My 3-Year-Old Son Has Terminal Cancer

Cindy Campbell was handed terrifying news last summer: Her 2-year-old son, Ty, was diagnosed with non-rhabdo epithelioid sarcoma, a very rare and aggressive form of cancer that, if not treated immediately, would take his life within a few short months.

Once the initial shock wore off, Campbell and her husband, Louis, set out to find the best possible care for their dying child. Despite an exhausting journey that took the family from New York City's Memorial Sloan-Kettering Cancer Center to The Children's Hospital of Philadelphia and several other medical facilities throughout the northeast, Campbell decided no amount of adversity would stand in the way of her desire to keep Ty's world a happy place.

Necessary road trips became family outings. Precious time together became an adventure.

And, now, six months later and painfully aware of cancer's ticking clock, Campbell, 35, tells ParentDish she takes inspiration from her son's innocence and cheery nature.

The upstate New Yorker left her job as a publicist to take care of her ailing son and his 22-month-old brother, Gavin, yet her career skills are coming in handy, as she gathers national awareness for her son's condition -- one so unusual that a standard protocol of treatment has yet to be set.

Campbell documents Ty's life on her well-read blog, Ty Louis Campbell -- Our Little Fighter. She also set up a Facebook page for her son, where hundreds of people, many of them strangers, check in daily to show their support and stay updated on how he's doing.

But, as the days pass, Ty's odds of survival grow slimmer. The family has to make impossible decisions on whether to pursue further -- and possibly painful -- treatment, or simply bring the boy home to spend whatever is left of his life in a peaceful and happy environment.

ParentDish recently spoke with Campbell by phone while she sat with Ty at Sloan-Kettering's pediatric intensive care unit about what it's like for a mom to care for her child, who faces the serious possibility of dying at any moment. An edited version of the interview follows.

ParentDish: When did you first notice Ty was ill?
Cindy Campbell: Ty didn't have any developmental issues. The only issue we ever showed concern over was the fact that he never, ever slept well through the night. And, as he reached the toddler stage it was becoming worse.

He would always wake up frequently, and we suspected it was because something was bothering him. We pestered our pediatrician about it ... My husband actually posed the question, "What if he has this crazy brain tumor or something?" And we were told that we were overreacting.

PD: But things didn't improve.
CC: When Ty was 2 1/2, it started getting worse. He was clearly waking up from headaches and discomfort, and in the final days following up to his first MRI he was completely sleepless and whimpering in pain throughout the entire night. Our doctor had arranged for an appointment with a sleep clinic after the third or fourth complaint we made, but we finally just decided to take him to the ER. We needed to know ... and we didn't want to wait any longer.

PD: Can you tell us about Ty's prognosis?
CC: Ty's prognosis has never been very promising, and the doctors have always been very guarded when delivering a prognosis -- even to this day. Regardless, there is always hope and we are still aiming for a cure.

PD: How did this start?
CC: When his tumor was first identified on an MRI, every single doctor and neurosurgeon we consulted with was convinced it was a chordoma (a malignant bone cancer). But until there is tissue to put under a microscope, it isn't possible to know for sure. Turns out he didn't have a chordoma. He had an extrarenal rhabdoid tumor.

PD: It's an extremely rare condition.
CC: On Dec. 8, we were given a terminal prognosis of four weeks to three months. We were told his cancer metastasized and that he was suffering from leptomeningial disease, which is known to be a very progressive, terminal cancer in the central nervous system. We were beyond devastated. We were suffocating.

PD: A cancerous tumor was found at the base of Ty's skull. Did that make it inoperable?
CC: The tumor was not inoperable, but it was not a possibility that even the greatest neurosurgeon in the world would be able to remove the entire tumor. One doctor wanted to open him up by cutting through the bone above his top teeth, another suggested splitting his palette, and another wanted to go through the skull from behind his ear. We selected a surgeon who was confident he could do the surgery endoscopically through his nose and mouth with the same results as some of the more invasive options.

PD: Ty endured chemotherapy, as well. Was it effective?
CC: Yes, the chemo worked, for sure. The tumor reduced about 50 percent in size after his first two cycles, but we had to cut it short due to complications.

PD: But Ty's prognosis changed.
CC: To the surprise of his doctors, the lesion that was killing him has practically disappeared and the other signs of leptomeningial disease have reduced significantly. They retracted his terminal prognosis, so, naturally, we rejoiced and we decided to resume discussions on next steps to address the original tumor the following weekend.

PD: And then, four days later, his original tumor started to act up and bleed, causing pressure on his brainstem and leading his team to suspect it was growing again.
CC: We had some additional discussions about signing a DNR, should he bleed again, because these spontaneous bleeds cannot be stopped and another one will be catastrophic. To say I'm on edge right now is an understatement.

PD: Do you still have hope, in spite of everything?
CC: Absolutely. It's important to be informed and realistic about the likely outcome, but never to give up hope on the chance that maybe, just maybe, the doctors are wrong or that Ty will overcome this despite all odds. If I didn't have that, I don't know how I would get through the day.

PD: You must have had some horrible emotional moments over the past few months.
CC: One of my worst breakdowns took place when I returned home by myself to get some things I needed after almost three straight weeks in the hospital. He was in terrible shape and it was just heartbreaking to watch him in such pain day after day after day.

When I walked in the door it was as if I was trying to walk back into the life we had before our family was affected by cancer. I walked down the hall and into his serene baby blue bedroom, I laid down in his tiny toddler bed and I cried for as long as I was physically capable of crying. Then the crying turned into begging and pleading. "Please, please, please." It was my first and my worst breakdown.

PD: What's a bad day like with Ty?
CC: A bad day with Ty is a day when I can't stay ahead of his pain or his nausea. I might give him his meds and he still cries out "Ow!" or "I need med!" But my hands are tied because I've already maxed out on pain meds. I can't tell you how much that hurts me to hear him crying out in pain like that. At home, I give him his pain meds orally, so sometimes it can take up to an hour to kick in. I watch the clock and it's like the time is moving backward. I put cold packs on his head and my husband and I pretend to give him additional medicine and that usually seems to put him at ease for a while.

PD: And how does Ty's father handle it all?
CC: Lou has been amazing. I don't know how he does it between work, home and spending as much time as possible at the hospital when we are here. Most days, he will go to work straight from the hospital, drive two hours, work until 7:30 and then drive all the way back to the hospital just to sleep with Ty at night.

PD: How is Gavin, Ty's little brother, taking it?
CC: All things considered, he is doing very well. He loves it when we are all home, of course, but he has also spent weeks on end with his aunts and uncles and he adapts very well. It breaks my heart to know that he isn't getting the same amount of devoted attention I was able to give Ty when he was the same age, but he is so loved by so many who are giving him great care, so I know he will be OK through all of this.

PD: Do you believe in the power of positive thinking?
CC: Yes. I believe my son's amazing spirit and the positive energy around him is why the suspected leptomeningial disease has all but disappeared. This is part of the reason why I want as many loving people as possible to hear Ty's story and to send him more and more positivity. I think it can manifest in a way that helps Ty in his incredible fight. I see it working and I pray it continues.

PD: Is there a part of you that believes your son will survive this?
CC: Since the beginning, his prognosis has been pretty dire, but I always had this incredible feeling that he was going to beat all odds. In fact, I often have visions of him as a handsome grown man who does good things with his life.

PD: How does Ty handle his situation?
CC: Ty handles his situation with complete cuteness. Sure, Ty gets depressed, but it doesn't last long. Sometimes I catch him staring off with a long face and I ask him what he's thinking about and he snaps back at me every time with a short-tempered "nofing!!" (nothing). But, two minutes later I can suggest we do arts and crafts or call Pop-Pop on the phone and his face lights up. Kids are amazing like that, the way they can shake their mood.

He talks a lot about things he wants to do when he feels "bedda," and I think he believes very much that that day will come.

PD: And when he's at the hospital?
CC: When we are in the hospital for extended stays, he definitely struggles. Also, during those times he often has more pain and just feels bad, so trying to rouse him from bed to go to the toy room or get him excited about arts and crafts can sometimes be impossible.

PD: What are some of the things that inspire Ty?
CC: I'm not sure he truly understands how serious his illness is, and he finds so much joy in so many simple things. Like, when we leave the hospital and they remove the needles from his mediport he sings "I'm FWEE!!" or when his grandparents visit him at the hospital his spirits are often lifted instantaneously.

He is so happy and full of love despite everything he has been put through. And, when times are tough, or when he has a lot of pain, he doesn't complain -- at least not as much as I would if I was in his situation. ... Every time I tell him we have to go back to the hospital, the worst he does is let out a sad sigh and say, "o-tay." He is such a trooper.

Want to get the latest ParentDish news and advice? Sign up for our newsletter!