From diagnosis to recurrence...(March 05 - Feb 06)

On March 21st of 2005, three days before Will would be 7 months old; he got a chest X-Ray at Children's Hospital Boston which found a large mass in his chest. The reason for the chest x-ray was that we discovered an enlarged lymph node at the base of his neck where it meets his left shoulder. It wasn't the pea sized kind that you sometimes find on kids after they get sick...it was large enough that we noticed it by SEEING it instead of feeling it. It was in the soft spot of his neck and when I touched it (back in January for the first time) I immediately knew something was wrong. It felt about the size of a very large grape and was 'squishy'. It made my stomach roll, because I knew that nothing in that location should ever feel like that.

We first went to his pediatrician who recommended we go to Children's and get an ultrasound of the node. They did the ultrasound of the node and they took a look at all of his major organs to see if there were any abnormalities (tumors) and nothing was found. As I later learned, each lymph node is responsible for 'draining' certain areas of the body and this was a supraclavicular node which would 'drain' the chest. An enlargement here would indicate a possible malignancy of the chest.
After the ultrasounds showed that the lump was in fact an enlarged lymph node, it was decided by our pediatrician that we should see a Pediatric surgeon to determine what the next step would be. My aunt has worked at Children's as an RN for her whole career and after speaking with her, she did the first of countless favors in helping us with Will's treatment and that was to get us an appointment with the Chief of Surgery at Children's.... Dr. Shamberger. The appointment to see him was about a month out so we just had to sit tight in the meantime and wait to see him.
The lump was on Will's left side, and one other thing of note was that he had a slight eye droop (the top lid seemed almost swollen) on the left side as well. We did not think they were related but we did think it odd that they were both on the left side...Will was born via a C-section after attempts at a natural delivery failed due to his size (10+ lbs) at birth. When he was born he had a very large and pronounced bump on the back left 'corner' of his head from the failed attempt at delivery. We suspected this was related (since we are not doctors we were reaching for answers)

As it turned out, during our wait to see Dr. Shamberger Dina took Will to visit her parents in RI and while down there her parents noted that Will's left arm seemed 'swollen' almost as if filled with fluid. When you compared the two arms side by side you could see a significant difference, which scared us. Therefore, we called up Children’s to make a new appointment, as fast as possible, with the first available surgeon. We were now worried that he had a third left side issue and wanted him to be seen.

We got an appointment with another surgeon and explained the situation: enlarged supraclavicular lymph node, left eye droop, and swollen left arm. She took a look at him and said the eye droop was not a problem, the arm was 'baby fat' and that the node was unremarkable. She recommended that we just watch it for a few months and if it did not go away, to come back for another appointment. She ordered a blood test (which was inconclusive), but other than that, sent us on our way.
This was good and bad...It was good because it was EXACTLY what I wanted to hear and helped justify the denial I was living under....It was BAD because Dina and I both knew that something was wrong. I chose to blissfully follow her advice and ignore my gut feeling...Dina trusted her gut and her mother’s instinct.
We told our Pediatrician about our visit and she was still not impressed....both our pediatrician, one of her colleagues, and my aunt were still advocating that we still keep our appointment with Shamberger. As we later found out.....from Doctors, Nurses, parents of other patients, etc...we were very lucky to have an appointment with Dr. Shamberger so we decided to keep the appointment.
Before that took place we got a call from our pediatricians office telling us that she consulted with another surgeon at Children's and they decided that we should get a chest x-ray of Will. This was on Friday morning and I told Dina that I thought we could wait until Monday...if it was going to be bad news...then I'd just assume get it on Monday and just have a normal weekend, so we pushed it off and decided to wait.

On Monday, I went to work and Dina went to the hospital with my mother to get a chest x-ray. As I was sitting at my desk I got a phone call from Dina saying that they did the chest x-ray and that the found a mass in Will's chest...I hung up the phone, got in cab, and headed to the hospital emergency room.

We met with Will's eventual oncologist, Dr. Sid Rao, his surgeon Dr. Shamberger and they told us that this was most likely a tumor growing out of nerve cells next to Will's spine that is cancerous and called Neuroblastoma. We were to be admitted that night and we spent about a week in the hospital where they did scans, did a bone marrow biopsy, a tumor biopsy, and various other tests. It was determined that Will had Stage III intermediate risk Neuroblastoma. This measn that the tumor had grown large enough (baseball sized) that it was now large enough to be on both sides of his spine and since it had crossed the mid-line (spine) and spread to the lymph node in his neck that it was Stage III, not stage II. It was not stage IV since it did not spread out of the region or into his bone marrow. It was intermediate risk because the tumor biology was not the 'fast growing' type of tumor. With this diagnosis combined with Will being less than the age of 1, he had a very favorable diagnosis. What does that mean?

Statistically, kids with this diagnosis do very well (some studies say 80-90% cure rate) as opposed to kids with the fast growing tumor that are also older than one. That is a 50-50 proposition at best. We were obviously upset, but we felt good about his chances given the fact that he was in a favorable category as far as NB goes.
At the end of the week all of us (Will, myself, Dina) came down with a horrible bug that caused us to get sick and spike a fever. As we were on a pediatric oncology floor we had to stay away to avoid getting anyone sick so Dina and I were locked up in a hotel room across the street getting violently ill while my dad was staying with Will in the hospital through his first round of chemotherapy.

It made a very bad situation intolerable as our son was just diagnosed with cancer and was getting chemotherapy pumped into his body while sharing a hospital room with another family. We were so lucky that any thoughts we had previously given to moving out of state in the past never came to fruition because we wanted to be near our family...thankfully they were here to help. Eventually we got better and were able to stay with Will for his last day in the hospital before heading home.

The plan was as follows: 8 rounds of chemotherapy as part of a clinical trial to shrink the tumor as much as possible...followed by surgery to remove what was left. The chemo would be done on an outpatient basis at the Jimmy fund every 3 weeks for about six months. After six cycles, the tumor stopped shrinking so they decided to perform surgery on August 29th, the day Katrina hit the Gulf coast, and just five days after Will had his first birthday.

The surgery successfully removed about 85% of his tumor, but the remainder had to be left in as removing it would have damaged the nerves controlling motor function in Will's left arm as well as damaging a nerve that controls his diaphragm. This is normal for NB as the tissue is not like most cancers in that it ALL has to be removed to prevent it from spreading. Will spent about a week in the hospital and then we made it home. He had two more rounds of chemo just to make sure that whatever tissue was left was killed, or converted from cancerous (immature) to non-cancerous (mature) tissue.

We finished up with treatment in the beginning of October and started our monthly visits for follow up. By Christmas everything was looking good, and in early February we went in for his first round of follow up scans and blood/urine testing.
Everything looked great, and his oncologist eyeballed the scans and said they looked great...in fact, there was even mention of perhaps skipping his next visit and coming back in two months!

This was great news, it was about five months of living a normal life (finally) and Will was now walking, and his personality continued to grow. Other than being sick from treatment or surgery, he just seemed like a normal (bald) kid. No problems, no issues, and nearly 100 percentile in height/weight/head. We finally stopped being germaphobes and living in a bubble and started doing all the things normal kids do without worrying about Will anymore than a normal parent does.

Then....the next day....I got a phone call from Will's oncologist with some alarming news.