our son's journey: The First Round-8

On August 5th, the next day, they did not waste anytime. First thing in the morning Jeremy went to the O.R. to get a PICC line (peripherally inserted central catheter) inserted into his right arm. This is an IV that can be used for a prolonged period of time. It's often used to administer chemotherapy, and is the preferred IV as the risk for infection is very low. The IV was inserted peripherally and then routed to Jeremy`s superior vena cava via larger veins. A few hours later Jeremy was receiving his first dose of chemotherapy.
We were told that although Jeremy`s cancer, infantile fibrosarcoma was common, metastatic infantile fibrosarcoma was not. According to the doctors, this type of cancer did not exist up until it decided to invade Jeremy`s body. Once again the doctor`s exhausted their resources and discovered that nowhere in literature had this cancer appeared, nor had any other doctors come across this cancer anywhere else in the world. Jeremy had been assigned to a different oncologist, one that is known to take on any case, especially the tough cases. He devotes a lot of time for research and therefore is very familiar with the rare forms of cancer. He also had never come across this cancer before. We kept being told that Jeremy`s cancer was unique. This wasn`t exactly comforting as it meant that Jeremy would not have the ``cookie cutter`` treatment where they knew the outcome and could follow a protocol. It meant that for Jeremy`s case they would be playing it by ear and figuring it out as they went.
The preferred form of chemotherapy for infantile fibrosarcoma is called VAC. It stands for Vincristine, Dactinomycin and Cyclophosphamide. The oncologist only wanted to start out by giving the first two medications as they all have adverse side effects but for the first two at least they are tolerable. With these medications Jeremy would be expected to experience severe constipation, jaw pain, nausea and mucositis (mouth sores). These chemo meds were supposed to be the lesser of evils. He would keep his hair and these meds didn't need any prehydration or post hydration so they would be given in under 5 minutes. The protocol was to give the two meds and then once a week for the next two weeks he would only receive Vincristine. We sat by Jeremy's bedside as he was administered his first dose of chemotherapy. Then we were told to wait and see how his body and the cancer would respond.
The following day we moved back up to the 3rd floor, 3B, the oncology ward. I had been floated as a nurse to this unit before. I liked the nurses and the culture but always said that I couldn't work there because it was so sad. It seemed every time they had report, a patient that they had cared for had passed away. These poor children did not win the battle against cancer. Would our baby be strong enough? I had to remind myself that although we only see the sickest kids at Children's, there are plenty of survivors of cancer out there living life to the fullest. This is what I had to promise for Jeremy. Take each day by day, do not think too far ahead or your thoughts will get away with you. Life is short, enjoy each and every moment. These are my new mantras.
All in all August was quite fun filled. Brent was off work for several days so we switched out each night so that one of us would always be with either Chloe or Jeremy. Chloe would come in and visit her brother everyday. She loved coming to the hospital because not only did it mean family time but also time to play on the deck which was filled with all kinds of toys. On August 11th we got our first day pass, so the whole family packed into the van and headed to Stanley Park. And on August 12th nana came to stay overnight with Jeremy so that Brent, Chloe and I could all be home at once and have some time to just enjoy Chloe. Friends and family came to visit and we enjoyed many hours sitting in the sun on the deck at the hospital. Brent eventually went back to work, and we had a semblance of a normal life as the doctors got more comfortable with Jeremy and lenient with us which allowed us to get daily passes and the odd overnight pass. On August 21st we were all able to be home for Chloe's birthday. Brent and I were so grateful to get that opportunity as we were always mindful of not letting Jeremy's illness take away any of the much needed attention for Chloe.