Seth was born full term (a little over-due!) but with three birth marks. One on his back, left foot, and left hip. We’d been following them making sure they didn’t change, get any bigger and always had the pediatrician take an extra close look at our regular visits. I was more concerned about the one on his hip because it had what are best described as “skin tags” on it and was worried these would bother him as he got older because they were right where his pants would sit.
At Seth’s two month check-up the pediatrician mentioned the texture of the one on his hip had changed a little bit so let’s have a dermatologist take a look just to be safe. I made an appointment at the local dermatologist she referred us to. We went for our appointment and pictures were taken to send out to her extended network to which no one had a good idea of what it might be so it was decided a biopsy would be done. We had one of the “skin tags” removed and a little of the tissue under that taken for analysis. Again it couldn’t be determined what it was so at that point I opted for a second opinion and got a referral to Boston Children’s Hospital Dermatology.
On October 26, 2016 we had our first visit at Children’s dermatology. Seth was quite a hit with all the doctors coming in to take a look at his birth marks because it was something they had never really seen before. They offered to use the sample received from the original dermatologist to analyze or take some more of the skin tags off for pathology to use. Due to my concern that they would bother him later in life we opted to have more removed, better to do it while he’s young and won’t remember. He wasn’t too happy about the whole thing but did great and was a trooper through it all.
A few weeks later I got a call from Dr. Liang saying pathology couldn’t determine it was nothing from the sample they had taken so they wanted us to come back for a deeper tissue sample called a “punch” biopsy.
On November 9, 2016 we returned to Children’s dermatology for Seth to have the deeper tissue sample taken. Dr. Liang mentioned pathology takes each case very seriously because they know if they say it’s nothing the doctors may do nothing so they wanted to be totally sure. Seth once again was a trooper for this procedure, at one point he just gave in and sat there quietly until it was over.
On November 15, 2016 I received a call while at work from the Dr. Liang stating she had good news and bad news. She heard back from pathology and they did not find any cancerous cells in the sample itself however the type of cells they found in Seth’s biopsy have sometimes been associated with underlying tumors. For that reason, he would need to have a full body scan to make sure everything was ok. She said she didn’t want me to be caught off guard but Dana Farber would be the ones to reach out to schedule this testing. I managed to hold it together on the phone because I think I was just in complete, total and utter shock thinking there is no way my perfect, happy, smiley baby boy could possibly have cancer!! But when I got back to my desk the realization that it may be possible hit and I cried like a baby. I missed a meeting and my boss sent me home for the day.
Later that day we received the call from Dana Farber scheduling his appointment for December 2nd. December 2nd?!?!?!? that was two weeks away and this is cancer we are possibly talking about why do we have to wait so long? Steve had a conversation with Dr. Liang and she said because they didn’t find any cancerous cells in the sample it was not an emergency to be seen but she would ask if it could be moved up.
On December 2, 2016 I went to work in the morning before Seth’s scheduled visit at Dana Farber’s Jimmy Clinic. Early in the day I received a call from a nurse saying they wanted to do an ultrasound of Seth’s belly and head. It was scheduled at Children’s Hospital an hour before our scheduled appointment at the clinic. This made me a little nervous but I figured this must be the body scan they were referring to previously. We waited for what seemed like forever at the ultrasound area because they were so busy but finally got called back. Seth was flirting with the tech as he does with all the ladies. She did his belly first so that he could have a bottle when she was done. She said everything looked good but was just going to review with the pathologist before moving on to his head. She came back and Seth enjoyed a bottle while she did the scan of his head. She did not say everything looked good this time which I mentioned to Steve and that made me nervous. She came back and said they got what they needed and we could head over to the Jimmy Clinic. She wished us luck and got directions for us from the receptionist.
We arrived at the Jimmy Clinic where Seth got his ID band and vitals were taken. The nurse gave us directions to exam room G (I will never forget that) rather than taking us there which seemed strange to me. When we arrived at the room there were about 6 people waiting for us. I honestly thought this can’t be the room, we must be interrupting a meeting or something. But they welcomed us to the room and we sat down for what would be a conversation we never in a million years thought we would ever be having. Dr. Greer welcomed us and we had a little small talk but got right into things. He took a little family history and then explained that the cells they found in Seth’s birth mark are sometimes associated with tumors in the belly and brain which is why they did the ultrasound of those two areas. The belly came back clean but they did find a spot in his brain. We fell apart. Again how could this be happening? He told us that there are 4 documented cases ever that show the link between these skin markings and a rhabdoid tumor. He explained that when the tumor is in the brain it is called ATRT and that is what they believe Seth has. Seth is the first case they have ever seen where the skin markings led to the tumor. Usually the child shows symptoms of the tumor which is then tied back to the markings on the skin. We went through a whole slew of questions about why, how, what does this mean going forward, etc. They didn’t want to elaborate too much because they didn’t know 100% this is what was going on but were also fairly certain. Dr. Kieran from neuro oncology joined us later and introduced himself saying he had been setting up appointments for Seth to have an MRI early next week. He mentioned while the ultrasound showed there was something there it is not the best way to get a good picture of what is going on and an MRI would be necessary.
And this is where our new journey with Seth, Sadie and as a family really began. The reality that our perfect little baby boy has what is believed to be cancer…