When was Seth diagnosed with cancer?

Seth was preliminary diagnosed at 5 months in December of 2016, but his diagnosis of AT/RT (Atypical teratoid rhabdoid tumor of the brain) was not confirmed until mid January 2017.  Seeing the dates now does not seem like a long time but it felt like an eternity in the moment.

How did his treatment progress?

Seth’s treatment was slow to start due to the amount of time it took to get a definitive diagnosis.  We spent 6 weeks from the time they told us he most likely has this really terrible and aggressive cancer to when we actually received confirmation and his treatment followed the same path.  If there was a bump in the road Seth hit it!  Beginning with the wrong type of central line being placed, to fevers, RSV, and other bumps along the way Seth didn’t begin treatment until February 3, 2017.

His type of treatment was aggressive and they told us it would be difficult and Seth would be in-patient for weeks on end.  He did defy all odds and made his way home pretty regularly but we also spent a fair share of time in the hospital. Seth was a trooper through it all and for the majority of the time had a smile on his face.

In early June 2017 we got amazing news that the treatment was working and the tumors in Seth’s brain had shrunk.  They were so elated with his reaction to treatment that they were going to begin preparing Seth for the stem cell transplant phase of treatment.

As parents we were so excited.  Our son was going to make it, and although the stem cell transplant process is hard and grueling on everyone involved it was going to keep Seth with us so we were ready to move full steam ahead.

But Seth’s cancer had different plans, during the testing needed to move toward stem cell transplant a large tumor was found on Seth’s right kidney; and it had grown during the time that Seth was receiving chemotherapy.  Why his brain responded and his kidney didn’t is something we may never know.

From the time we found out about this as parents we wanted to enjoy our time together as a family.  Keeping Seth as comfortable as possible for as long as we could have him with us.  However, the option to remove Seth’s right kidney was posed to us as potentially giving him another possible 18 months.  How could we possibly refuse that opportunity?  They weren’t even sure this was AT/RT so we went for it.  Seth’s right kidney was removed and he recovered nicely.

It was 2 weeks later that we were doing additional testing to determine next steps for Seth when an MRI revealed that the tumor had grown back in the same place to half the size it was previously, he had spots all over his lungs that were too numerous to count and a concerning spot on one of his vertebrae.

Devastating doesn’t even begin to describe how we felt.  We had his kidney removed to give him, give us, and our family more time and now we’re right back in the same devastating position.

At this time we took Seth home for as long as we could but ultimately decided to return to the hospital when things got worse because we didn’t want him to suffer.  We had a wonderful few days as a family having sleepovers at the hospital and just being together as a family of four.  Seth ultimately took his last breath on August 30^th in my arms.

What did that devastating news feel like for your family?

Through the whole journey we were hit so many times with devastating news.  The initial mention of AT/RT – how can our perfectly beautiful and healthy baby boy have this terrible disease with no sign of anything.  How will we do this financially, emotionally, physically?  How will this effect Sadie?  Could she have it?  Do we have it?  So many things spiraled through our minds.

Then realizing that you couldn’t save your son.  A terrible feeling that no parent should ever have to experience.

And lastly having your infant son take his last breathe in your arms.  Something I would never wish on anyone but also something I wouldn’t change for a second. I was there to bring him into this world and I was there to ease and comfort him on his way out.

What were some of the things that helped you get through the initial months of diagnosis and treatment?

Our friends, family, and employers really rallied around us from the start and haven’t stopped.  In the beginning it was just spending time together, meal drop offs, and eventually it grew to financial support, ensuring that Sadie was well cared for when either of us couldn’t be with her, dropping everything at an instant when we had to take Seth to an appointment or the ER.

What were some of your child’s favorite things to do? Did he have super heroes, sources of comfort & joy?

Seth was so young through all of this that he couldn’t tell us what he wanted to do but he always wanted to be held and snuggled, he loved his swing and rocker, his eyes lit up when Sadie came to visit or when they could play together, he loved throwing his toys on the ground and making us pick them up over and over again, he listened to music with my husband, and his favorite toy was the syringe for his G tube.

What is your favorite memory or the most positive outcome of attending a Rett’s Roost retreat?

By far, it is the lasting friendships formed and finally having people who understood what we were going through. People who had those same hard questions and terrible thoughts running through their minds.

What is the one thing you could tell everyone about childhood cancer?

Let’s be honest it sucks!!!  You never think you’re going to be the one effected by this terrible disease until you are and it’s heartbreaking and life altering.  But despite how awful all of it is, the diagnosis, the treatment, the sicknesses, the unbearable grief, there were a lot of good times and memories too.  The circumstances weren’t the best but we enjoyed time as a family as often as we could and made a second family with the staff on the 9N floor at Boston Children’s Hospital.  We really got to see how generous and loving people could truly be through what will hopefully be the worst experience of our lives that we carry with us each and every day.