Brantley was born August 11th, 2014. During my pregnancy, we were referred to a specialist in Peoria. We discovered some abnormalities while seeing this doctor. Via ultrasound, it was discovered he had a two vessel cord, a dilated kidney, and a VSD. We continued to have monthly check ups in Peoria. At the fourth visit, it was discovered he also had a mass at the end of his sacrum. It had already been decided that I would deliver via c-section, because it was a high risk pregnancy. Brantley was delivered August 11th 2014 at 3:50PM. Once he was delivered it was immediately apparent he had other abnormalities. He was born with an Imperforate Anus and a tethered spinal cord. He was taken to surgery at 2 days old. The surgery was to remove the mass at the end of his sacrum and to give him a colostomy bag. The mass was benign. Also, while in the NICU, Brantley had surgery to put a stint in his kidney to help drain better.
Finally after being in the NICU for 20 days, Brantley was getting discharged!
Once we were home, we got into a rhythm for taking care of Brantley. We had home health nurses come for a couple of weeks, to help with his surgical dressings and colostomy care. We did a lot of research into each anomaly that he had. In total, there was 5. His heart, his kidney, his spine, the mass and his Imperforate Anus. Through the power of social media, we found support groups and doctors that were among the best. Collectively, all of these things, were classified as Currarino Syndrome. We ended up finding a doctor in Ohio that was a world renowned Colorectal surgeon. We moved his primary care team of doctors to Ohio, at Nationwide Children's Hospital. As we learned more, we figured out his kidney was not the issue, but rather his bladder. There was a doctor in New York, that worked specifically with kids that had Currarino Syndrome, and related issues. He treated Brantley and his bladder issues, which helped tremendously. We now spanned 3 different hospitals for care, in 3 different states! Unfortunately, even though we were rockin' and rollin' with surgery's and recovery's and Brantley was hitting all milestones, April 9th 2015 during a visit to Ohio, we were told Brantley's mass was growing back. The mass he was born with was called a Germ Cell Tumor. Typically, the tumor is removed along with the tailbone to ensure everything is gone, and that is all that is needed. It does not usually grow back. Brantley had surgery to remove the mass again. May 28th, 2015 we found out that the mass they removed did not grow back the same. It grew back as a malignant (cancerous) Yolk Sac Tumor. That was a hard pill to swallow, but his oncologist felt that she was able to remove everything, so we stayed positive. We continued to do routine blood work, to ensure the tumor was not growing back. September 17th, 2015 we found that his tumor was growing back, again. This time, his oncologist was going to remove it and place a port.
The plan was to start chemo.
November 5th, 2015 Brantley received his first 3 doses of chemo. The plan was to do 3 doses every 3 weeks, for a total of 3 rounds. We got through that, without too many complications. It seemed everything was going according to plan, he completed chemo and things looked good. He was scheduled to have his port removed May 9th 2016 along with reversing his colostomy. His schedule for surgeries was slightly shifted because of chemo, but we worked it all in and things were going well. November 17th, 2016 we were back in Ohio for follow up scans and were given news we didn't want to hear. Brantley's tumor was back, again. December 13th, 2016 he had his port put back in, and chemo treatment was being discussed. We decided to do his treatments in Iowa City this time, instead of in Peoria. January 3rd, 2017 he started treatment again. This time he was going to do 4 rounds, instead of 3. We loved being in Iowa City. We loved his doctors there and the staff. We started in the old hospital, but were moved into the new children's hospital, which was amazing! Things moved along, and March 31st 2017 he completed chemo. As a mom, you sometimes just have these feelings and I felt like "Is this really it?" "Is he really done with chemo?"
I just felt like it wasn't the end. I just had this feeling his tumor would come back.
May 22nd 2017, he had a small lesion removed. Majority of his cancer was gone, but with his history his surgeon didn't want to leave anything. After that surgery, his surgeon didn't feel like she was able to get everything. This tumor was proving to be very difficult and hard to treat. His oncologist wanted to move on to a more aggressive form of treatment. The same drugs would be used, but at a much higher dose. Chemo completley wipes out your immune system, you're left with nothing. With time and the help of other drugs you regain white cells. This was not going to be the case with high dose chemo. Brantley would need a stem cell transplant. So, that was the next phase. He was able to be his own donor. We did his stem cell collection in Ohio, had them froze the cells and had them sent to Iowa City. We also discussed doing proton therapy. Each cancer is different and reacts differently to treatments. With Brantley's tumor, radiation and proton therapy are not typically used. October 5th 2017, we found out Brantley's cancer had spread. With a Yolk Sac Tumor, if it is going to metastasize, it will spread to the liver and lungs, which is where it had spread in Brantley. We had a lot to think about. Brantley, at this point, had completed 8 rounds of chemo and exhausted all surgery options. His surgeon did not feel any more surgeries would be beneficial. We had a plan for high dose chemo with stem cell recovery, followed by proton therapy. But, that plan came with a lot of risks. His body had already endured so much chemo, and at a certain point your organs can't keep up with it. His kidneys were not functioning as well, and you have to have a certain level of kidney function to push all the chemo out of your body. If they are not functioning as they should, high dose chemo wouldn't even be an option.
So, did we risk it and start the chemo, not even sure that he we would be able to finish what was planned? Or, do we stop treatment and pursue other options we had been looking into? After many conversations, and phone calls to his doctors, we decided to stop treatment. We had found an alternative doctor in Minnesota that had really good options for treatment. We continued to share everything we were doing with his doctors in Iowa City and Ohio. We had come to a point where they left the decisions up to us. Brantley was not necessarily responding to chemo treatment, and things were just getting worse the more we did. They considered it quality of life that we chose, but at the time that's not how we thought. We felt the treatment options we were pursuing were going to get him better.
After only a short time of alternative treatments, Brantley's cancer continued to take over. Thanksgiving of 2017 Brantley was in a lot of pain. We ended up getting admitted in Iowa City. An MRI showed the cancer was growing, and spreading fast. It was taking over his liver and lungs. There was nothing more we could do. We brought Brantley home on hospice, and had him home with us for 2 weeks before he gained his angel wings. Brantley passed away December 16th, 2017. We don't like to say he lost his battle with cancer, because he most certainly did not. He fought so hard, and through all of it had the most amazing spirit! He always had a smile on his face. He was smart, courageous and brave. Brantley loved super heroes and the Ninja Turtles. He was the strongest, bravest super hero we knew, and we will never forget our sweet, sweet boy. Through this foundation we will continue to share his story and love for life. We will strive to help as many families as we can who are facing a cancer diagnosis.
Matt, Jeanna, and Brooklyn
Brantley's mom, dad and big sister