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....

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! :)

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 

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..........

PICTURE POST: The Journey continues

                                           Leg Needle Sticker Chart. 30 for every brave kid. 

This was Nevan's first!

Dad Checking Nevan's Heart Rate.  Might get a more accurate reading if he was not playing video games at the same time!

 



Finger Poke.  Nevan gets a finger poke to check his blood counts every week.

A Little kid in a big room

Even at the worst of times, Baby elephant never left his side
 

He is the funniest when he wakes up from sedation!



Our first Day pass from the hospital

A very careful picnic in the park



He loved the silicone bracelettes we made for him.  "Noone Fights Alone"

 



Pretty Nylah



Feeding the birds at Riverside Park

 

 



Riverside Park



The birds love Nevan

 



Going to Dr Laura's Fundraiser

 

 



Nevan's first time in Public for Dr Laura's Fundraiser

Nylah in the bouncy Castle

Nevan is a Survivor.... in the making

 



Far away high fives

 



Nevan's Favourite thing... Glow in the Dark Mini Golf... this time with the help of a pair of gloves and a package of Clorox wipes in tow!

Deja Vu

Well, after a good month of feeling strong and healthy and having some great moments... Nevan is again feeling pretty crummy.  It feels like Deja Vu of the last time we had to have his tube inserted.  He has a very sore throat from the insertion of the tube and his stomach is hurting all day.  He has stopped eating all together and is throwing up all the feeds that we are trying to put in him over night.  He is weak and frail and sleeps most of the day. 

I guess over this past month we thought the worst was over and we wouldnt end up back here but here we are.  This morning we woke up early to go and get our christmas tree in a tree farm and store in Flamborough. I made a nice breakfast of French toast and bacon at Nevan's request (of which he ate none) and then we started getting our boots on.  Nevan stopped and asked for some more medicine to help his tummy.  You know its bad when Nevan requests medicine... a few seconds later he threw up everything we put in his stomach over night including his morning meds.  We carried him to the couch where he fell asleep shortly thereafter and we just flashed back to 8 weeks ago. 

Nylah is still a happy, busy toddler, not really being affected by all of this.  She stays happy playing on her ipad and making everyone food in her play kitchen.  We ended up staying close to home this morning and getting a tree from Canadian Tire instead.  It's these types of forced changes that make life for Nylah almost unfair.  By this age, Nevan had been to the park countless times, African Lion Safari splash pad was his favourite place and riding his bike was one of his favourite pass times.  Nylah hardly knows any of these places and she has ridden her tricycle less than 5 times.  A side effect of spending our entire summer in the hospital and spending the fall and winter secluded and trying our best to avoid cold and flu season.  She is always happy and doesn't really know what she is missing... but we do. Hopefully as next summer approaches, Nevan will be feeling much better and we pack it solid with fun things for both kids to do.

Help a Child Smile is a charity organization that works directly with McMaster Hospital and they definitely make sure that these cancer kids smile.  They provide tickets to major theme parks for children well enough to go including Disney on Ice, Sporting Events and Various parties.  We also have Camp Trillium to look forward to, which is a camp for all cancer kids and their families.  Other parents have said that it is therapy for the soul.  Each child that attends is assigned their own attendant and they keep them busy with activities.  Other activities are scheduled for the adults or they can just sit and relax.  A whole tonne of family time and an escape from 'medical norm'.  Something that the kids will definitley enjoy is a cottage... we are looking into possibly renting one ourselves for next summer somewhere, but once Nevan is done his treatment, there is an organization called Cottage Dreams where people provide their cottage for a week of free use to all children who have survived cancer. 

There are definitely things to look forward to... we just have to keep moving forward to ge there...

Cute Story of the Day:

We are teaching Nevan how to say the alphabet phonetically and sound out his words... he tries to teach Nylah..... but she is not quite getting it!

Nylah: "Nevan... you going osispal?"

Nevan: "Nylah, Hospital has a H in it... H- H- ... Hospital"

Nylah: "H- H- osispal??"

Nevan: "No... like T- T Teacher"

Nylah: "OHHHH, Me Try... T-T Baby!!  C-C Nylah! B-B Toothpaste!!" 

Nevan: " Mommy... she doesn't know anything..."