Our new life

Thursday, January 28, 2016

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..........

Thursday, December 31, 2015

Round 1 vs Round 2

So many people feel our pain of having to go through this all again. We have watched our friends have to face relapse and have felt the same as all of you...Sad, confused and angry. It is only those parents that truly know what we are going through now, but let me try and put it into words here.

We were obviously devastated... it was completely out of the blue, unexpected. Even the Drs and Nurses were stunned. We called family and friends immediately because we knew as soon as we began discussing treatment, our brains would need to focus on the task at hand, grasp it, learn it and make serious decisions very quickly... we would be distracted and busy from this point forward just like last time.... Not so.

This time was different... harder.. sadder.. more crushing. Which we honestly thought was not even possible considering what we went through the first time... what could be worse that hearing than your 4 year old has cancer?! ... hearing that your 8 year old has it again.

The first time we got the cancer diagnosis it was was followed by a whirlwind of events that forced us to either focus and stay grounded or be sucked up in them. We lived moment to moment, day to day, conversation to conversation, symptom to symptom. It was so busy, so stressful, our family was immediately split apart for months with no sign of relief. We read everything we could and listened to every word spoken to us... many moments simply spent trying to trick a 2 year old and 4 year old into thinking that everything was fine.

This time Nevan was not sick, it was not crazy and instead of living moment to moment, an entire 3 years of painful, fear-filled, heart-wrenching memories came flooding back within moments of our first conversation. It was blinding, deafening and shocking. The conversations made sense to us immediately and there was no need to turn to google for clarification... the medications were familiar and the side effects understood. Very few things required a whole lot of explanation although the amazing Drs went through our 30 page consent form with us page by page.

There were numbers everywhere, lengths of time, dates, medication doses and statistics. One statistic in particular got us through so many hard moments last time... Standard Risk Pre B Cell ALL has a 90% cure rate... the first time around. This is the statistic I was waiting to hear during the entire conversation... we were told on more than one occasion the cure rate for relapsed ALL is also high. This is where a good lesson in relativity should be inserted because what is high to them is not at all high to me... finally the number was given... Nevan has a 50% chance. This number was a punch in the stomach... it still rings through my brain every single day... multiple times a day. Even though I have been told and understand that it is not where my focus should be... there are some things you just can't un-hear.

So many supporters lending their shoulders and words of strength and wisdom, but I couldn't hear them or see them. Where last time I was in it from the get go and fully in control... this time I was lost. It has taken me a couple of weeks, but I found my way back... I am strong and ready to support my baby boy and the rest of my family to fight again and win Round 2 with a KO.

Cute Story of the Day:
Craig's friends came over with his daughters for a visit. Nylah wasted no time taking them up to her room to play... after they were gone, she discovered that one of the little girls had left her small figurine behind.

Nylah: Daddy, Sydney left her toy in my room, we HAVE to give it back!

Daddy: Ok let me text him and let him know
He texted back and said the toy is just from McDonalds and you can keep it.

Nylah: Now wait a minute!! Did Sydney say that or did her dad?

Kids are always looking out for each other! Next time we see Daddy's friend we will be sure to return the little toy. :)

And... Round 2

As most of you are aware by now, Nevan's Acute Lymphoblastic Leukemia has relapsed. It has been a long time since we have written in this blog and I have been thinking about posting an update so often, but never getting around to doing it. Life started again for us, back to school, back to work, seeing friends, going where we want, when we want without the worry of blood counts or whether we were on the dreaded "week 1" treatment protocol. Normal life got in the way of sitting and writing and we simply let it... happily let it... welcomed it with open arms...

Now, in a very twisted and cruel moment of Deja Vu, here we are again... me sitting in my 'chair-bed' at McMaster Children's Hospital and Nevan sleeping in the hospital bed beside me. Stuck in a small room with nothing to do but be entertained by one of the many electronics we have plugged into the one outlet we are provided with in our room. Silence interrupted by the beeping of machines, the check in's by nurses and tonight... the ice rain that is loudly blowing against our window. There is nothing to do... time to blog.

On Nov 28th, our entire family went on a beautiful 7 day cruise to celebrate my dad's 75th birthday, Nevan's 8th birthday and his first birthday off treatment and without his port. We were saying good riddance to a very painful chapter in our lives and hello to the new beginnings that were slowly coming our way. We didn't celebrate Nevan's end of treatment in 2014 with more than a simple picnic in the park. We thought... if things don't go our way, it will be harder to face the truth if we celebrate too much. We decided to celebrate 1 year instead... August 28th 2015 was one year off treatment... affectionately knows as super hero day in our family. We decided to dress up like superheroes and spend the day that way. We got together with family and friends and reminisced about all we got through, and how fast it flew by. We decided to plan a trip together to really celebrate and on Dec 6th, we returned from a memorable family trip... a trip of a lifetime. 2 days later was a routine check up at McMaster,,, soon we realized just how special that trip really was.

That day, Nevan's blood work showed that his platelets had dropped slightly along with his white cells... very typical of the body fighting a virus. Only thing was, Nevan had no signs or symptoms of being sick. He was strong, healthy, pain free and had a great appetite. We were asked to come back the following week to recheck, and also put on the sedation list in case he dropped some more and needed a bone marrow biopsy. We waited until the Tuesday of the following week when his blood tests showed that his platelets had come up and his white cells were still only slightly lower than before. The Drs were still fairly convinced that this was a virus and nothing at all to worry about. We spoke to his oncologist and she said that she really was not concerned and didn't want to push the bone marrow biopsy. We all discussed the pros and cons and decided that with the holidays coming, it may just be nice to do the test, get the results and have a happy and worry free holiday. Later that day we got the phone call... there were cancer blasts in his marrow. His marrow was 60% cancer to be exact... the battle we thought we won, wasn't even remotely over.

Cute story of the day:
We were at the hospital with Nevan and Craig forgot something in the car. Nevan and I continued into the hospital and waited outside the elevator on the second floor for Craig to meet up with us.

Me: Daddy will be here soon
Nevan: Lets go watch the elevators, I have a feeling he will be in the next one!
Me: Ok.... here it comes...
Nevan: Is Daddy in there!? ... Nope... just short people....

Monday, June 16, 2014

The Light is bright, but the tunnel to get there is dark...

There is a light at the end of the tunnel... and we are going to get there very soon. We have travelled this long, dark and narrow road for almost 2 years now and just as the end seems to be so near, it seems like one thing after another is taking its turn to remind us that we are not there yet and still very much on our journey!

The last few weeks have been rough. Nevan's reaction to his Dex is getting worse and worse. He is having a much harder time controlling his feelings and reacts very harshly to so many things including his little sister... poor thing. A few weeks ago, Nevan's secretary called me from his school and told me she had Nevan there with her and he was having chest pains. We dropped what we were doing, picked him up and spent the next 6 hours in the McMaster emergency room. They put Nevan through a bunch of tests, but could not diagnose anything... which in this case wasn't a bad thing. With Leukemia there is a very real chance Nevan will have heart problems in the future and these tests came back clear! Phew! The only other thing it may be was severe Acid Reflux... so more meds were prescribed.

Since then, Nevan has been feeling ok... we reached a mile stone this past week when Nevan had his LAST sedated Lumbar Puncture (chemo in his spine). That morning however he woke up and we noticed a fair number of bruises on his lower body. We spoke to the Nurses at clinic and they didn't seem overly concerned except to say "don't let him get bumped too badly". Ok... no problem... we have managed it for almost 2 years now. Fast forward 8 hours and Nevan is lying on the ground screaming as he falls off his bike! ugh! I told Nevan before he left that since he was sedated in the morning, we were not going to bring his bike to his school BBQ as he is still a bit dizzy. He agreed, but seeing all his friends riding around and having just missed 1 month of school because of a chicken pox outbreak... Nevan broke down and begged to join his friends. Daddy went to get his bike so he could ride in the last 5 minutes of the relay... it took only 2 and he was down. He cut his right hand open and got road rash on his elbow, shoulder blade and stomach. We took him home as fast as we could and I put him in the tub to wash as much of the dirt and gravel out as I could. Nevan has been and probably always will be physically and emotionally against anything sticky touching his skin. No bandages are allowed to come near him at any time unless absolutely necessary. The only other alternative, wrap him in tensor bandages and gauze! So that's what we did. He looked like he just had major surgery, but he was happy and went to bed utterly exhausted!

The next morning, Nevan felt a bit better physically but mentally, his dex was taking control. Nylah ended up touching the wrong lego piece and Nevan decided to gouge out her arm with the corner of the piece!! Nylah started screaming and Nevan was just angry... there was no remorse, just outright anger at the situation. I couldn't believe it... it was like Nevan was gone. My Nevan... the healthy one... the one that doesn't suffer from 'roid rage would NEVER have even thought to harm his sister. It was very upsetting for all of us.

Nevan is losing weight and doesn't have as much energy as he used to. He suffers with undiagnosed abdominal pain, diarrhea and fatigue. We are very lucky that he has tolerated it this well so far, but as our dreams of living a cancer free life are getting closer and closer to reality... it seems our momentum is wavering. 2015 cannot get here fast enough... we will welcome it with open arms!!

Cute story of the day:

When ever Nevan goes to school, I have my phone inches away from me at all times just incase I see Saginaw PS call through. It usually means something is wrong and I need to go and pick him up.

Last week the phone rings, I answer and there is a little voice on the other end.

"Hi Mommy, I just wanted to tell you that I am going to be dancing with Daniel and Ben in the talent show next week"

Me: "ummm ok... are you feeling ok?"

Nevan: "Yes"

Me: "Don't you have class right now?"

Nevan: "Yes"

Me: "Shouldn't you be there?"

Nevan: "Yes"

Me: "Nevan are you really not understanding what I am trying to get at here?"

Nevan: "Yes, I understand... bye Mommy!"

The Next Day the phone rings again:

"Hi Mommy"

Me: "Hi Nevan, Whats wrong"

Nevan: "Can you bring me some Cheesies?"

..... I don't think he understood! :)

Tuesday, May 20, 2014

An Long but Unintentional Hiatus!

Well, the last time we wrote was March of 2013! At first life got busy, then it got routine and when we sat down to write again, we found that Google had locked us out of our account! It took a lot of troubleshooting and finally a frustrating trip for Craig down to the Google Office in Waterloo to demand answers, to finally be able to write again!

Although I was unable to write, I read this blog over and over again throughout this past year. Sometimes to remember where we were on order to gain strength for where we are now. Sometimes just to have a laugh at all the cute memories that were intermingled among all the bad.

Yesterday we went to Churchill Park for a photo shoot with Marc Douglas Photography. Marc is a good friend of ours whose daughter is also battling the same fight that Nevan is. He was nice enough to shoot some much overdue family photos and this is one of them. I love this picture, but it makes me very emotional. Our journey to fight Nevan's cancer continues today, but we are so blessed, lucky, fortunate, to still have our family of four intact. I feel so immensely grateful for this but in the same thought feel heart broken for those families that have had to say goodbye to one of their members. Since I have written last we have had to send condolences to too many families.

Nevan and Nylah are strong and happy and doing very well these days and in the next few blog posts, I am going to back track to fill in as many events as I can, that have happened over the last year. Good times and bad times as all families have. We have made many new friends and have grown our extended family in such an amazing way. We keep each other going and immerse ourselves in their stories when ours become a bit too much to handle. At the same time, the family and friends that have been there from the beginning and still stand by us today keep our heads level and give us the much needed relief from a life changed forever. With the old normal we look back so fondly on and the new normal that is just on the horizon, I am so glad to be able to write and share again!

Cute story of the day:

Nylah talks NON stop these days, to herself, to her dolls, to the animals... whoever is around. I work from home now and sometimes I just need some quiet.

Me: "Nylah... you can sit with me on the couch, but I really need you to stop talking for a little while so mommy can concentrate ok?"

Nylah: "Yes mommy, I can help you concentrate, I can rub your back or your legs while you work and then you can work even better and faster and then after you are done you can play with me, because I have been waiting to play with you for a long time and all the 'by myself' things are done and..."

Me: "Nylah! I really need you to stop talking, just for a few minutes. We just had breakfast and I will play with you as soon as I am done writing some emails"

Nylah: " Got it mommy... You have to write emails because it is your job, but do you know what I can write? I can write my name and Nevan's name and mommy and daddy and Nana and Nanima... not sure about Grandma and Grandma yet, but you can help me with that when you are done writing your email, because sometimes I need help with things...."

Me: "NYLAH! Please, please, please just sit quietly for a few minutes"

Nylah: "OK! I am going to sit right here beside you and be super duper quiet so that you can finish your work and then it will be time to talk again as soon as you are done, I am very good at being quiet, I have to be quiet in daycare when my kids are sleeping or when Dawn talks, so I know how to be quiet..."

Me: " Oh man... ok Why don't you put your baby to sleep? She looks very tired!"

Nylah: "She can't sleep with all that typing! You are being way too loud!"

AHHHHHHH! lol

Sunday, March 10, 2013

Hibernation....(dad)

Its the beginning of March now. We try and keep daily notes for our own personal records but blogs are few and far between. We have been busy keeping life in order since Christmas. With me back to work and at 6 days a week it's busy around here for sure. Anita is and will be off work for quite some time but it feels like we need me home more to help out. We are planning of taking advantage of the new EI for parents with critically ill children benefit but are waiting for the bill to be passed. Politics... This will give us the summer off together as a family. I think thats fair considering we lost last summer to 3 months in the hospital. Many fun day trips will be in order I think.

Nevan continues to respond well to his treatments. He rotates a revolving 3 week schedule. Week one is always difficult. The steroid he takes alters his mood and makes him very sore. Think of being high and having a bad flu at the same time, oh and your 5 and don't know why you feel like this. That's nevan for 6 days. If we take him to school the day after the drugs stop he still feels sick. He tries to go to school for the day but only wants to stay for and hour. He loves school and would never ask to come home otherwise. We are used to it but it's still hard to watch. His eyes are glassy and foggy at the same time. He gets depressed and just want to sit in the corner of the couch or sleep all day. He walks himself to his bedroom 3 times a day without even telling you sometimes.

The following two weeks are filled with our normal happy silly boy. Nothing gets him down. He has even stopped crying and getting worked up about needles. Every visit to clinic is all about being brave. And he is. In 4 more weeks there will be one less thing to be brave for though. His last leg needle approachs. 30 in all. Once finished he is supposed to regain his strength and appetite.

His hair is starting to grow back. It's too early to tell but it may not come back to it's original dark brown. Maybe lighter they say. He lost a lot of his eyebrows and eyelashes too. It makes me furious to think it won't return to its original colour. I want so much for there not to be a trace of this once the treatment is finished. Unfortunatley he already has many scars. Hopefully creams and time will help with them. His perfectly little body is damaged with scars, puncture holes and bruising that are still trying to heal from 6 months ago. I hope he remembers nothing from this and at 5 years old he probably wont't.

Nylah is doing well. Brother and Sister get along and have lots of fun together. We feel like Nylah doesn't get to do a lot of the things Nevan did at her age because we get stuck in the house a lot. We really need for this summer to be as hospital free as possible.

We should have some good stories to share in the coming weeks as a small celebration will be in order for his last leg needle. We will keep you posted. It's 3:00 am off to bed..........