4 of 104 (dad)

Even if he has to repeat what he already has done it doesn't seem doable. Brave? No I struggle with that word. Bravery is about choice. Even at 4 years old he realized he had to or he would die. When I think of what we are forcing him to do I think of my own childhood. I think of how I remember my youth. The magic of it all. Not a worry or care. No stress or unreasonable requests. No threats or ultimatums. Will Nevan or even Nylah remember what the magic of being a young innocent child felt like. Or have we stolen that to save his life...

I can't put into words any better than Anita did of finding out his Cancer relapsed. The first few days were full of tears. We couldn't sleep for the first while at all. How could this happen? What could we have done wrong? What could we have missed? There is nothing we did wrong or missed. Not one change in what we or any nurse or Doctor did would have changed his fate. 60 years ago Nevan would be gone and from a flu bug by most indications. How grateful we are to know exactly why he is sick and even more grateful to have some way to try and save him. We show that gratitude every day by being co-operative and understanding with the Oncology team. They too have to carry this burden and have chosen a career that requires not only an intellectual component but an emotional one. I can't say enough how impressed I am with the oncology team we have and how well they know their jobs and even more so how much they care about our Family. When every Doctor meets you with tears or long faces you know that this shouldn't have happened. That we are all on the same page. That this is bullshit.....

I honestly can't articulate how I feel right now. We are grateful for the help he will receive but very aware that he is in great danger. The odds are horrifying. Being told your child has a 10% chance of dying is hard to stomach on top of what you have to do to achieve the 90% recovery. And now he has 50% chance. That number is so bad we can't even register its meaning. At this point its the fact that it came back at all that terrifies us. He had no serious complications from the first treatment. To be clear there were lots of ups and downs and nasty horrible days but he completed the treatment with no damage to his body as we could see. He finished all the leg needles which some kids body's cant handle. He made it to every treatment snow storm or not. He never missed a medication. He did what was asked. His numbers were always stable and when treatment was done his body recovered well. We shouldn't be here. Our only resolve is that one of the cells went dormant and the next 2 years will ensure we eradicate whatever was hiding.

The first four weeks of his treatment were not what we expected. Technically he should have stayed in the hospital the whole time however he came into this feeling very well. Because his body tolerated the initial days and because the team know us and trust us to watch him we were allowed LOA's often. Unfortunately his treatment started days before Christmas and because of the toxicity of the one drug he was required to stay Christmas eve for flushing and observation. I was very upset that we couldn't be together over Christmas eve. I have very few traditions in my family but Christmas comes with high expectations from me. I was aloud to bring him back home but needed to return by 9pm. The Magic of Christmas eve was lost anyway because he was too high on Dex to care about anything. I drove him back to the hospital around 7pm instead.  In the morning I had the nurses do blood work at 6am sharp. We left right after so that he could be there to see the tree lit up with presents under it while it was still dark out. We waited until late morning to give him his Dex so he could enjoy the morning with us.

Christmas wasn't the same this year. We didn't get to do a lot of the small things we consider our traditions. We spent some of the time apart and the things we did do were cut short or interrupted by meds and moods. We could have had a much worse Christmas though. We did get Nevan home for some of the holidays and he didn't complain about missing out on anything. Partly because of how laid back he is and partly because he was already exhausted from the treatment. He was also on steroids which affected his mood and energy and was content to just relax most of the time. Him and Nylah were both spoiled by Santa, Grandparents, Uncles and Aunties and the hospital. Nevan was diagnosed only weeks before Christmas and yet on Christmas morning one of his gifts was a small bear with his name stitched to its clothing. I was very impressed by this but not surprised. The amount of support from Child Life and volunteers and agencies and charities these kids get is enormous at Mac. Together they make being in the hospital happy :). So even though we didn't get to do Christmas the way we usually do, we still all felt the magic of the season. A little snow would have helped with that too.

Moving past the holidays Nevan had a few ups and downs. The layout of his treatment was not what we expected. I hesitate to use the word but it seemed easier than we were expecting. He got to have a few breaks from chemo and steroids. He was discharged on several occasions which technically isn't supposed to happen. The protocol is meant to be completed as an inpatient treatment however Nevan tolerated the high dose chemotherapy and was doing well. He was allowed to go home and even treated through the clinic on several occasions. This awesome perk came to an end towards the last week of his first block ( a block of treatment is 28 days usually ). After completing and clearing one of the medications he was discharged. I walked him to the elevator where while waiting he told me that his eyes seemed fuzzy. I told him that in a few seconds he would be sitting in the van where he would feel better. I assumed he'd been sitting too long in the hospital bed and had grown a little weak. I was wrong. The initial drop of the elevator brought Nevan down with it. I had my arm around him holding him close but my other hand had his pillow and blanket in it. He unfolded beside me like a marionette that just had its string cut. It all happened so fast and my reaction time is slow compared to some. I guided him to the ground and once the elevator stopped picked him up with one arm and asked him if he could here me. His eyes drifted as he fell but once I had him in my arms he seemed to be snapping out of it. Fortunately there were mirrors in the elevator so I could see his face. There was also a nice lady with us that sent the elevator back up to the ward. I'm pretty sure I scared the hell out of her but I told her he and I were fine. I went back up to the ward where one of the nurses noticed I had come back with him. I told her Nevan had fainted and then about 10 people ran us into his room. The team quickly discovered that his Hemoglobin was too low and we proceeded with a blood transfusion. Once the transfusion was complete they said we could go home again. I thought this was odd but considering Nevan was feeling well and all other vitals were fine and also that Mom and I are competent I took him and left. By the time we got home it was past his bedtime. At midnight he woke Anita because he was restless. At 2:00 am he woke her because his stomach hurt and by 3 he had a fever. Anita packed and left with him around 4:00 am. Our easy road had ended. The team talked to us and decided that it would just be safer and easier for everyone if we stayed now until we completed his bone marrow aspiration which was a week away. His fever disappeared and several tests came back negative. Anita and I talked and decided that no one should see Nevan if they or anyone in there family was ill in anyway within 48 hours. This blanket rule ensures Nevan stays as healthy as possible. It also keeps our stress low so we don't have to negotiate with people or worry about the what ifs. This rule applies to colds as well because we think he is dealing with enough and so are we. We are not depressed or feeling isolated. We are just protecting the 4 of us. There will be a time for visits and get togethers and we appreciate everyone's patience as we make these decisions.

This pretty much sums up the first 4 weeks. Its been a busy time and we've been using Facebook to give everyone recent news. The next post will be about Nevan's remission status and details of his 2 year treatment plan. Another 104 weeks of therapy followed by another 1 year off therapy and a 5 year milestone of cancer free followed by a lifetime of worry. And that's if everything goes according to plan.