Cameron's Fight against ATRT Cancer

This is our son Cameron. He is a spunky, fun-loving, chocolate milk drinking little man.
Shortly after his second birthday Cameron started getting sick. It was the beginning of February 2015 and one night right before bed Cameron vomited all over. It was a lot. We thought maybe he was coming down with something and kept an extra eye on him through the night.

Everything went okay and we decided it maybe was a one time incident. But then it happened again. We called the Doctor's office and spoke to a triage nurse who suggested something was going around and to keep an eye on him and keep fluids going. All the stuff you know you're going to hear but you call anyway. I called in family sick time at work. Honestly Cameron was behaving normally. No temperature. Just vomiting at a random time. It would happen in the morning, in the afternoon, in the evening and even in the middle of the night. There didn't seem to be a reason. We tried eliminating foods and called the Doctor's office. Visited the Doctor's office. They suggested it was allergies which causes drainage into the tummy and might make him throw up. At this point it was still only usually once a day. So we tried Children's Benedryl. No dice. Changed it to Children's Zyrtec. Nope. We were visiting the doctor's office about once a week it seemed.

We mentioned to the Doctor's office that Cameron had fallen down stairs at the end of January. (When it happened we called the Doctor's office but everything with him was fine). They didn't think this was the cause.
After about a month of this the vomiting starting to be more like twice a day Cameron was prescribed medicine for reflux. He sure did hate that stuff. But we kept giving it to him. We were supposed to do that for a week and call back.

The following week with no change we did call. We were upset and wanted more. This kiddo has been throwing up for many weeks!!! We asked about taking Cameron to a GI doctor. We asked about the fall down the stairs again. To boot my husband noticed a large lump under Cameron's arm. They changed the reflux medicine and had us come in to look at the lump. We thought maybe it was a lymph node. The doctor wasn't positive and set an appointment for the following week with a surgeon to look at it. Meanwhile Cameron's vomiting was greatly increasing, he wasn't keeping anything down. We were getting angry and worried. Cameron now was not his happy self. He didn't want to do much but also was very irritable. Daycare even started saying something. Family was noticing. Cameron was miserable. Throwing up was our new norm.

I suggested the GI doctor again. The doctor's office wanted to be less invasive and we went to St Luke's and Cameron had an ultrasound on his abdominal area. They couldn't see a reason for the vomiting.

We waited that week for the appointment with the surgeon. We kept forcing the reflux medicine down Cameron's throat. Things just got worse. Friday April 10th, 2015 my husband and I went to the surgeon. He couldn't quite tell what it was but thought maybe it was a really swollen node. He wanted to wait a month and see if it got bigger or smaller.  He even said there was a notation on the doctor's paper that the mother was fixated on all these things being related. He said the arm thing had nothing to do with Cameron throwing up.

That was that.

We were fuming.

It had been 9 weeks now of no answers.
My mom suggested taking him into the ER. I thought about it. My husband's Mom called to see how the appointment with the surgeon. I told her and said I was planning to take Cameron to the ER the following day before work. I had to get going because I had to get to work today. That was the plan.
My husband's Mom called later and said a family friend was the ER doctor working today. She suggested having my husband just take Cameron that day. We wanted to do some eliminating of anything that could be causing all this.

After some shuffling Adam left work early and I left work a few hours to go with him to the ER. I needed to return to work before we actually saw the Doctor. I wasn't at work very long and I was called and told it looked like Cameron had severe hydrocephalus!!!! They wanted Cameron transported to another hospital to get a shunt in place. I left work and got back to the hospital in time to hold Cameron on the ambulance ride to Sanford Children's in Sioux Falls. My husband followed behind.

That night was a long night. The doctor's wanted to do an MRI on Cameron that morning. They came and talked with us and said they saw some spots that looked like fresh blood. They weren't sure and needed a closer look and also for different people to look. They did mention a small chance that they were looking at tumors. Cameron was given an oral steroid and we slept the next few hours.

A closer look revealed Cameron had a big tumor on his brain stem and four smaller tumors. The cause of the hydrocephalus was that big tumor blocking the spinal fluid from draining properly. We were terrified. How does a two year old get brain cancer???

This beginning story is sure getting long. But that's the main back story. We have been at Sanford Children's for 12 days today. Our world has been turned upside down. In those days Cameron has had brain surgery to remove the larger tumor on his brain stem. He has had an exterior ventricular drain put in to remove all that extra fluid causing him SO MUCH PAIN. The "unrelated" lump under his arm was bigger than a golf ball. They did a biopsy of that.

We met with an Oncology team. Never did I think I'd meet with an Oncology team. Cameron's Oncologist sent biopsies of Cameron's tumors to University of Iowa. They seemed stumped that he would have a brain tumor and a tumor outside the brain. That is very rare.
We waited and worked on Cameron getting strong and recovering from his brain surgery. More scans showed Cameron also has little tumors in his spine.
Patholgy came back. It was the blow we didn't want to get.

Both samples came back malignant. Cameron was diagnosed with AT/RT cancer.
An atypical teratoid rhabdoid tumor, often called AT/RT, is a very rare and fast-growing tumor of the central nervous system. AT/RT represents only 1 to 2 percent of childhood brain tumors.

Here's the part we were told that made us want to throw up right away. AT/RT is a very difficult tumor to cure and, unfortunately, the outcomes remain poor. Cure rates for children over 3 are about 70 percent, while cure rates for children younger than 3 remain below 15 percent.

New therapy is being investigated in clinical trials. The goal is to increase the cure rates and improve survival in very young children and in children who have disease that cannot be surgically removed. Our Oncologist contacted St Jude's in Memphis, TN and that is our next step. Sometime next week Cameron will be transported via fixed wing with a medical team. He will be getting a trial medicine in addition to chemotherapy and at some point possibly radiation.

Adam and I aren't sure on how long the therapies will take but we're in it for the long haul. Thankfully we've been blessed with an insanely supportive family and group of friends who have all been with us every single step of the way.

Cameron needs treatment, and fast.

Please help us as we ensure Cameron is given the best chances possible to fight for his life. I promise you this little amazing boy is a fighter!!!

We appreciate everything and we are especially grateful for the prayers and positive thoughts from everybody... You ALL will help Cam win this fight.

Thank you so much!

Love,
            Adam, Ranelle & Cameron