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