The following day, Nicholas had surgery to remove the mass. He had a 12-inch “smiley face” across his belly, and was in pain, but we were so glad it was out. The initial results were that the mass was “mature”, meaning we caught it early, and Nicholas would be fine. What a relief! Up went the roller coaster. 24 hours later, we were trying to decide whether we would do chemo just to be sure, when the doctor came in. It was that face you see on a doctor when they are about to deliver bad news. And she did. Every test they had taken came back bad. Cancer was in his bone marrow. Cancer was on his bones – behind his eyes (headache), on his legs (legs brought in), on his spine (trouble sitting), among others. In all, there were 7 impacted areas. We were given roughly 30% chance of 5-year survival.

From the highest of highs, to the lowest of lows in an instant. Every painful emotion – deep sadness, frustration, intense anger, helplessness – how could this be happening to us? We relived the past several months – how were so many warning signs missed? We must have missed something that would have caught this. The Doctor actually told us our diagnosis path was very common – for a disease with survival riding on early detection, that seemed impossible.

We had no choice but to fight this, so we agreed to have a central line implanted into Nicholas. It was a tube that came out of his chest, that made access for delivering chemotherapy, medicines, and blood transfusions less traumatic. A central line comes with increased risks of infections, but the pro’s far outweigh the cons. The treatment protocol was described as grueling, more intense than treatments given to adults. But, what choice did we have? Chemo is an easy word to say, and you think you are ready for what you will see. In some respects, you want it to start to fight the disease. But once it’s started, you are scared, on edge almost constantly. I remember walking in the first time Nicholas’ chemo was dripping. He was breathing fast, almost whistling. He was extremely pale, and as he “slept”, his head was positioned so just in case he threw up, he wouldn’t choke on it. Overwhelming.

With each day, and inspired by the way Nicholas handled the treatment, watching the treatments became bearable. Nicholas was incredible. Did he have bad days – yes, very bad ones. But except for the worst of the worst days, he was still Nicholas – playing, reading, watching his favorite stories, and communicating with his famous smile. He lifted us up, inspired us to be there for him, selflessly.

During treatments, an important factor was Paul, our youngest child. It was important to make this as “normal” as we could for him. After many conversations, and trying several options, we agreed to ask Grandma to stay with us. It’s important to not have to worry about daily life, and Grandma allowed us to worry about Nicholas and his treatment, and not about making the house run and who was caring for Paul. While in the hospital, Nicholas always had one of his parents with him. We referred to them as special “hospital hotel sleepovers”, and Nicholas was in some ways excited to have one-on-one time with his “Mama or Dada”. It was important for him not to dread the hospital, because he would be spending a lot of time there. Each of us would split time at the hospital and at home. Thankfully, places of employment were understanding, and when we needed to be at the hospital, we did not have to worry about work.

Nicholas’ standard treatment protocol was 6 rounds of intense chemotherapy, followed by a marrow transplant. In his case, because his blood was not impacted, his own stem cells were used instead of needing to find a marrow donor. There was a procedure to collect his stem cells, where a special tube was inserted into his neck to collect the stem cells from his bloodstream.

After 28 days in the hospital, Nicholas finally came home. We were nervous. As part of the chemotherapy, we were told to expect him to be nauseas, tired, his counts to drop, and expect to come into the hospital due to illness. Well, we didn’t realize how true that was. After 27 hours being home, We were awaken by Nicholas struggling to breathe. We found out that when white blood cell counts drop, a common place for issues is the throat and mouth. Normal bacteria kept in check by your immune system grows when the immune system drops. We did perform Mouth Care for Nicholas, but Nicholas’ white blood count had dropped to 0, and the bacteria had taken over. Mucous was clogging his throat, gagging him, and making him feel like he was choking. So we rushed him to the ER (our hospitals policy was admission through the ER). It was our first round of chemo, and we didn’t know what to expect. Nicholas was very sick, and had lost a tremendous amount of weight. We had never seen him that sick in his life. High fevers, pain, chills, no appetite. I remember Christmas morning, we thought he was actually dying. The Doctor came in to check him out, and said “this is a tough time, but he looks OK.” OK?!?! Hard to believe that it was to be considered OK. But, sure enough, 7-10 days after each round, we would find ourselves on our way back into the hospital due to an infection of some sort.

These infections were not due to any out of the ordinary exposure to sickness. We had made the decision to live effectively in isolation, to minimize Nicholas’ sickness. It isn’t necessary to live in isolation - there is no right or wrong answer to your decision. We kept the house as germ free as we could, went through gallons of Purell, and did our best to keep Nicholas healthy. While he did get sick, most of his infections were due to the mouth sores, not anything he caught (mostly due to his “comfort move” of chewing on his hands).

Once treatments started, we developed a sort of routine. Sickness, almost constant nausea, hospital visits, blood transfusions, medicines, blood draws, and maintenance of his central line were part of daily life. Testing time, however, was difficult. Your mind switches from daily, short term mode to a strategic, long term prognosis mode – scary.

Testing involved injections of radioactive solutions, drinking of chalky “shakes”, marrow sample extractions, and long days of scans. Then came the waiting. Throughout our struggle, news was never conclusive. Typically, we had minimal change in the growth of the cancer, but results were always ambiguous. Doctor’s could not tell us whether it was going away or not on the spots impacted, but they could tell us if a spot appeared or disappeared. Nicholas’ spots varied slightly throughout the first 6 rounds, but at the end of that time, there was very little change from when we had started treatment.

Because of limited success, we talked often about what to do, when to stop treatment, when to find something else. We were always on the internet, looking for the treatment that fix everything. We would go through as many articles and hospitals as we could find – searching – but always feeling like we were missing something. Many times we would start a search and see the information was outdated – form the late 90’s. You receive information from your doctors, and it is good information. But if something doesn’t go as planned, you have to live with it, not them. There are no easy, right or wrong decisions to be made, but decisions made without all of the options and facts leave you second guessing even more. It was a frustrating aspect of being a parent for a child with cancer.
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