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....