Thank-you Thank-you Thank-you

Three years later and the circle has grown. On Friday July 13 2012 at 5:00 am we woke to a phone call from the Cambridge Memorial Hospital. Since that very moment our family has been trying to cope with the reality that our son, brother, nephew, cousin, grandson, great grandson and friend.....Nevan, could possibly lose his life. Over the years, we have been very fortunate to have so many people come to our aid. The list of family, friends, neighbours, acquaintances, businesses and charities that have helped us is beautifully lengthy and ongoing.

From the first day of Nevan's original diagnosis we have had help in the form of gas and grocery cards dropped at our house, food made and delivered, offers to do chores and run errands, discounts from some local retailers and sympathy cards with kind words and phone numbers. We get emails and texts from people constantly asking what they can do to help. We were also lucky enough to have 2 fundraisers during our first battle that helped us weather some of the financial burden of this situation; A Fun Day Fundraiser by Active Health Associates and the other, an evening Gala by our parents and Beer Store Friends. We also had other events as well as a donation barrel from my employer.

This helped us immensely in the first year when the treatment was hectic and intense.  Being off work was a necessity as we had 2 kids to take care of and during so many hospital stays, appointments and procedures, it is impossible to be in two places at once.  As our 2.5 year journey continued and life took on a bearable routine, we were able to return to work part time, but the final financial toll it took on our family was almost dire.  The help we received from friends, family and the community allowed us to put food on the table, maintain our vehicle for the hundreds of trips back and forth to the hospital and keep our home.  After treatment ended, we were given over a year to make an attempt at normalcy.  We went back to work full time, kids went back to school and we were just beginning to really pick up the pieces of our lives when we got the devastating news that we would need to battle Leukemia all over again.

This task became slightly less intimidating when we realized that our family continues to be supported by the amazing people who joined our journey the first time and who are now joined by hundreds more to help us through for this second and hopefully,  final battle.

Saturday's Fundraiser was an enormous success. Everyone who attended could feel the energy and love surrounding our family. We were so happy that Nevan was well enough to attend. He and his sister Nylah had the most fun they've had in months.

The list of family, friends, sponsors and supporters for this event is in the hundreds. The turnout for the event was the best reward for all the hard work put in by the organizing committee. We have no idea how we can properly thank everyone for their support.  We can however do what is expected of us. We will, as we always have, stay focused and determined. We will stay positive and strong. We will exhaust all resources available to us to give Nevan the best chance of survival. The challenge is daunting but there are those who have come before us that have fought and won this battle. So despite the odds and the complications, we will strive for nothing less than cancer free and a full recovery. We will support not only Nevan but his sister Nylah who has made unbelievable sacrifices for her big brother. We will find time for our marriage in between all of the hospital stays and medical discussions and time spent raising our children. And because of the very generous support of so many we will maintain our finances as we once again proceed on a budget of reduced income and increased expenses. Because of you our family can stay together through this difficult time.
Thank-you for being a part of this incredible Journey.

Special Thanks for this event goes out to but is not limited to;

Saginaw Public School
Waterloo Regional District School Board
Fiddlesticks Community Centre
Blessed Mother Teresa Elementary School
Clemens Mill  PS
Sears Cambridge Centre
Cambridge Centre Honda
501st Garrison
Rubbersource
Rotary Club
Cambridge Fire Department
Marisa Pinto Photography
John Van Tran Photgraphy
The Cambridge Times
Conestoga Connect
The Cambridge Fire Department
Amplified Midlife Crisis

The Treatment Plan... FINALLY!

As we began this second fight, we had a long meeting with our oncology team who told us as much as they could about what we were facing, but at that point the knowledge of our future ended 28 days from that point.  After that, there were so many possible treatment protocols based on whether or not Nevan was in remission, how far into remission, whether he was accepted to the clinical trial we requested to be a part of etc.  Without these answers we had no idea what life had in store for us.

Finally after a very nerve wracking month of high intensity chemo, Nevan had a bone marrow biopsy and showed that his cancer was in remission and low enough to move forward on the low risk standard protocol arm of our treatment plan.  We also found out that we were not accepted into the trial that we requested.  We weren't entirely sure how to feel about this as both us and our team spent weeks preparing for participation into the trial.  If Nevan was not as far into remission as he was or not handling the chemo as well as he had been, I think Craig and I would have been more concerned, but since all the news we received thus far was good, we both are relieved that we will not be introducing any more chemicals into an already full treatment plan and allowing Nevan to have a slightly better quality of life as we navigate through the next few months.

 Although his treatment plan is very complex and intense we will try our best to give an overview as to what the next 23 months of Nevan's treatment will look like. Everything is subject to change based on his daily blood counts, remission status and tolerance of the chemo and meds.

To start, Nevans cancer is in remission. While this is great news, it does not mean that his cancer is gone. What it means is that in a small test sample of blood, there were little to no cancer cells found... again.. amazing news!  However this small sample of blood does not represent his whole body and we need to continue to treat for 2 years to ensure that every last cancer cell has been eradicated.  The treatment protocol for relapsed ALL is not easy.

For those who followed us through his first 2 year battle with Leukemia,  this time around will be more difficult with stronger and larger doses of chemotherapy drugs. The layout of chemotherapy is more frequent and overlapping within the protocol. The number of days Nevan will be neutropenic will be much greater than before. The long term side effects and possible damage to his brain and organs has increased drastically and his chance of life-long remission has dropped to 50% from 90%.

The month of February will be almost as aggressive as the first 4 weeks of treatment and will be followed by one last bone marrow aspiration to determine if his cancer is still in remission. After that the month of March will be a similar treatment as February. April and May are considered one block of treatment and will be slightly less aggressive than March. June and July will be a repeat of April and May. August he starts what's called maintenance phase. It has three initial blocks which are August, September, and October of this year. In November he moves into full maintenance which will repeat itself monthly until December of 2017.

Confused yet?! We are slowly figuring it out ourselves. Basically we will continue to push high levels of toxic drugs into him for the next several months. He will continue to visit the hospital several times per week. He will be admitted for treatment some days or if he gets a fever or doesn't tolerate the therapy. He will receive chemotherapy, steroids, several antibiotics and other preventative medication at home daily.

He will miss school for the rest of this semester and not be able to participate in any extra curricular activities or sports. He will feel horrible many days and will have to be kept away from sick people for the entire 2 years. He will be home schooled and tutored until the fall but may return to school as early as May. Nothing is firm right now. Some things we plan will be cancelled and everything can change or be shifted with very little notice.

The battle has just begun...


CUTE STORY OF THE DAY
After watching Nevan and Nylah proudly wearing a different outfit every day (Awesome Xmas gifts from family and friends)...

Daddy: "Ok... why do you guys have a way better wardrobe than I do?"

Without even looking up from what she was doing...
Nylah..." because we are cute... and you are old."

Nothing makes 37 feel old like the words of a 5 year old!

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.

Back to the Future (dad)

This will be the first time I make the effort to sit and write a full blog of what has happened so far. I haven't blogged for a few years now. I have a few drafts with titles and main themes started but no finished products. As Anita said 2015 was full of some much needed normalcy and the year before that just felt like it dragged on week after week. The rotating 3 week cycles we were on with his chemo were draining. It took up much more of our time, patience, emotional stamina and money than we had anticipated. And when the big day came on August 28Th 2014 we were glad to be moving on. I remember that day well. I remember how fast it came upon us and how exhausted we were by the end of his treament. But something was missing. We had finally finished over 24 months of treatment but even with a final date there was now sigh of relief that day. We had already gotten him into remission in 2012 which was the main milestone I guess but this moment was about finally being able to stop being a cancer family and start being a normal family. And there in lies the problem. We felt the truth then but now we know it. We will never stop being a cancer family. Never. We will never be a "normal" family. Our universe will always have Nevan's Acute Lymphoblastic Leukemia right in the center of it. It shapes who we are and how we think and feel. It decides how our time and money is spent. It determines our future goals for ourselves and our children. It alters every single relationship we have. Our marriage and parenting feel it. Our relationship with our parents and the kids with their grandparents. Our relatives are pushed out further along with all our personal and family friends. Cancer consumes as much of their loved ones as it does the patient.

2015.....Anita said that we were happy to get back to the normal swing of things right after his treatment finished. And we did, Nevan went back to school and so did Nylah. Nevan still missed some time because of catching some flu bugs that required some checks by the hospital plus his many follow up appointments. I went back to work and although had to take a few more days off than expected they were all for Nevan's illness and I worked more than enough overtime to compensate throughout the year. We got caught up on things around the house. We tried to do some day trips with the kids. We tried to get together with friends and family but my work schedule is hard to match with other peoples jobs. We also were busy with counselling for all of us to deal with the toll of the previous 3 years. We all suffered in different ways and all needed time and help to move forward. Nevan did an amazing job of getting back into the social aspects of school and the academic as well (once he stopped being social all of the time :). Nylah is not very independent by nature so putting her on the back burner at a young age caused some damage but now that she is in school she is truly emerging as a bright courageous leader. She has a lot of spirit and we are working hard to let her be who she wants to be. The dark cloud above all of us is that Anita had to quit her job to take care of Nevan. I was able to go on disability to keep my job but took a 60% pay cut to be home with everyone. This all was done a mere 6 weeks after buying our 'forever' home and tripling our mortgage with tons of renos required. I wont get into the details but essentially we took almost $100000 in consumer credit that should have gone into renovations to improve our home and increase it's value. Instead those credit sources were used to hold on to the house and our life style with the hopes that the market would go up and we could repay the loans once life returned to normal and regained a full double income. The total income lost we figure is around or above $135000 after tax from both of us. We were very lucky in the beginning by having several people come forward to raise money for us through fundraising campaigns. We estimate around $40000 was raised over all including charities and fundraisers and tax savings for Nevans disability. We are forever grateful for the efforts of our friends and family to raise money for us.

One of the biggest financial tools we had in place was a critical illness policy on Nevan for $20000. I had it through my employer and took it along with many other products in preparation when purchasing the new home. The policy was denied in the end because of a hidden rule about not paying out for cancer in the first 90 days. We were half way there. Even so, Nevans cancer can be tied to symptoms of a flu or cold which means if he had either they theoretically could deny the claim. LOOPHOLES everywhere. Long story short , we took them to court, sued for the $20000 policy's worth, had the lawyer call us greedy because of the large amount of charity we did receive. Yes greedy because I wanted the money from a policy I was still paying a premium on to continue benefits for other illnesses for both kids. Life's not better under the sun. You get cancer and then they don't payout. The contract was so twisted you couldn't tell the difference between adult or child. So we chose to settle and walked away. Fighting further could have had them sue us for damages if we lost. We also signed a non-disclosure that as you can see I couldn't give less of a shit about right now. We left that court room that day and left everything behind us. It was undeniable proof to us how little the world cares about children with cancer. But look around you. Forget war and famine and global warming. Look at the litter and the road rage and the manner in which we speak and treat each other at the local grocery store or mall. We don't seem to care about a lot of things these days.

So 2015 passed very quickly for us. There was so many expectations on our part but with me back to work on long rotating shifts and the kids catching up on school, swimming, skating and piano, and Anita putting a tremendous amount of effort into securing a self employed income for her future we just ran out of time. We have so many people we have wanted to see but we couldn't find the time. If you are reading this and feel like we have not put effort into our relationship with you you are probably right. But it was out of a lack of time not interest. Catching up is taking so much longer and life keeps moving no matter how far behind we fell. I hope I can stay off work as long as possible so we can truly find the balance in our lives that we crave right now.
At this time I need to point out that the purpose of this blog is to inform on Nevans journey but also to document how we all feel and are dealing with his illness with respect to every way it affects us. PG 18 warning!!!! If "(dad)" is in the title there will be some colourful metaphors. After 20 years in organized labour positions I have become versed in many forms of foul language. Not proudly but one must adapt to their environment in order to survive and even thrive. And the term FUCK CANCER was coined long before I arrived. This is my blog and as such I write what I feel.

There now we can move on to current day or at least the beginning of our re-journey......

Funny story. all the words blog, blogger, and blogged are not in the dictionary of the blog platform I'm using..........