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..."

PICTURE POST: Nevan's Birthday

Waking up super early to see his special birthday present

Acting Crazy infront of the Fish Tank

One Froggie Cupcake for Nevan's Actual Birthday

Tradition is that each birthday the kids are allowed to choose what ever cake they would like.  This year Nevan chose a superhero cake for one party and a bust of Spiderman turning into Black Spiderman for his next party!! I have made kittens and puppies, a giant yellow octopus, a stegasaurus and a Toy Story Cake... but these were some tall orders!  Time to call in the help of a professional... Auntie Yvonne to the rescue!  We spent all of Wednesday creating these cakes! 

This one turned out WAY Better than I thought it would!  I carved out carrot cake for the chest and shoulders and used styrofoam and tinfoil to make the head.  Covered the whole thing in yummy Fondant!

A very Special guest came to Nevan's party... a life sized Spiderman Balloon!

 Nylah and her Baby Elliott

 



Nevan, Grandma and Grandpa

Happy Whole Hand Old!!! Nevan is 5!!

Last week end we celebrated a very special occasion!  On Nov 27th, Nevan turned 5 years old!  As usual, Nevan had been counting down the days to his birthday since the day after Halloween! Very accurately remembering each day how many more 'sleeps' until his big day. 

His actual birthday fell on a Tuesday and we woke him up extra early (6:00am before Daddy went to work) to give him his gift.  I snuck in and told him that there was a very special birthday surprise waiting for him.  I asked him if he wanted to go down and see it and he rolled back over under the covers and said "Not right now... maybe in the morning".  Spoken like a kid that likes his sleep!  I woke him up anyway and carried him downstairs.  Set up on the main floor in their play room was a beautiful 36 gallon fishtank!  Complete with bubble blowing dinosaur!  He was still a bit tired and never really had a full reaction until later in the day, but he was definitely surprised and excited.  

We decided to have 2 parties at the house because we just couldn't fit all of the people we wanted to invite into our house at one time.  On Sat we had friends over and on Sunday, family.  The friends party with the kids turned out to be much smaller than anticipated because unfortunately Nevan's birthday falls right in the middle of Cold and Flu season!  So many of the other kids were sick and couldn't come.  But as it turns out, 4 kids is pretty much all our house can handle! lol.  They had a blast and our playroom was ransacked within minutes!  It was so amazing to see Nevan have fun with his friends for a full 4 hours.  His energy lasted and he was having a ball!  It was the first time he was able to play with a group of friends since he was diagnosed this July.  We want to send out a heartfelt thank you to Greg, Lisa, Pratiksha, Rahul, Tom and Amy for coming out and helping Craig and I feel like Normal parents for a day!  And to Rowyn, Leila, Caden and Dilan... thank you for making Nevan and Nylah feel like normal kids! 

Sunday was our family party.  Nana #2 and family fell ill also and had to stay home.  Auntie Priyanta came on behalf of all of them and in true to Auntie style, had awesome gifts in hand.  This eased Nevan's feelings of missing his Nana #2 so badly.  Also on hand to make this another great party was Baby Elliott, Aunti Yvonne and Uncle Dave (his favourite Fighting buddy), Auntie Medhini, Uncle Anoop, Grandma, Grandpa, Nana and Nanima.  This party was a little calmer, but just as fun!  Nevan and Nylah again had a blast and were completely tuckered by the end of the night!  This is Nevan's favourite group of people and they did what they do best... made him feel like the king of the castle!

Nevan has been doing very well these past couple of months.  He is on routine with his meds and his Chemo and is very brave now during his fingerpokes and leg needles.  He doesn't cry at all during finger poke and helps the nurse collect his own blood now.  The leg needles, although still very painful, are tolerated well thanks to the "Leg Needle Hat" the nurses create just for Nevan everytime he has his chemo.  They are unbelievable! Sometimes there are 3 of them in the room and they are talking a mile a minute and acting silly.  They don't give Nevan the opportunity to get worked up or upset until the needle is already in... and then it is over in a few seconds!  (If I haven't mentioned before the nurses and drs at Mac are amazing!).  We are still working on being brave for his chest pokes, but thats a hard one.  I don't think I would be so calm with a needle coming at my chest either.  Another amazing milestone is that Nevan is now taking all of his meds orally! Since dad's cooking caused him to throw up his nose tube a month ago Nevan made the very grown up decision to begin taking his meds... and he has.  The problem is that he is not eating.  While for most kids, the steroid phase is supposed to drastically increase appetite.  For Nevan, his appetite goes right out the window.  Very soon after the tube came out, we started noticing him losing weight.  We tried our best to get him to eat as much as we could, but Chemo distroys the taste buds, making food that you once loved taste bland and uninteresting.  We just couldn't find anything that Nevan enjoyed.  Even the Mr Noodle packages were not cutting it anymore.  We didn't want Nevan to have the tube for his birthday so we tolerated his eating habits and tried to introduce him to as many new things as we could, but he was shrinking fast.  The first clinic day after his party we made the decision to put the tube back in.  We will get his weight back up as high as we can with night feeds and pushes of calorie shakes into his stomach and then take it out again for Christmas.  Although he had the tube out for a fraction of the time he had it in, Craig and I got used to seeing him without it and perhaps forgetting time to time that we had a critically ill child.  Now with it back in, it is again a constant reminder to us and everyone else, just how fragile he really is.  Another reason that this birthday was extra special for all of us.  Thanks again to all of you who helped to make it as amazing as it was! 

Cute Story of the Day:

Me: "Nevan, do you want a snack?"
Nevan: "Yes Please?"
Me: "What would you like?"
Nevan: " I don't know, what do we have?"
Me: "We have Regular Fish,  Pretzel Fish, Cookies, Ice cream, Chips, Bananas, Grapes, Carrot Sticks, Crackers, Cheese, Yogurt...."
Nevan: "Ok"
Me: "So Tell me what you would like please"
Nevan: "For what?"
Me: "Dont you want a snack?"
Nevan: "Yes please.... what do we have?"

Perhaps I should have turned the TV off while trying to have this conversation! :)

Another Ambulance Ride

Well, it looks like our daily posts, turned weekly posts have now turned into monthly posts!  A sign that life is moving along at a very fast and busy pace!

Life over the last couple of months have had their eventful moments!  Halloween being one of the high points and an Ambulance ride to the emergency room being one of the lowest.  Yup... there was yet another Ambulance called... this time the patient was me! 

It all started with a batch of spaghetti and meatballs that Nylah and I shared for lunch... I left to do some errands and within an hour my stomach started turning.  Nylah was completely fine however so I pushed on to finish the things I needed to get done.  About 30 minutes after walking into the house I started becoming violently ill, it seemed to come out of nowhere and it was very harsh.  I dehydrated myself so severely in the span of a few hours that my major muscles were cramping and I was losing conciousness on the bathroom floor!  It was unbelievably scary and I knew I had to go to the hospital, but the thought of sitting in a car made me want to panick... so after talking to Telehealth, an ambulance was called.  I dont remember much after they lifted me up to carry me downstairs as I passed out within minutes.  I just remember being in the back of the ambulance and feeling like I was going to freeze because for some reason the paramedic thought that the tank top I was wearing would be enough to keep me warm in -6 degree weather!  (not at all bitter about that ;)

When we arrived at the hospital I saw a familiar and comforting face... it was Tony, the amazing nurse who was there and put the IV in for Nevan the day he was diagnosed with Leukemia.  He was also the one who gave Nevan 'Dog the Cat'... a special home made stuffed animal that he still has at the foot of his bed.  This time Tony was there to take care of me and he again was amazing... he had the Dr see me quite quickly and ordered me fluids and a miriad of meds.  Within Minutes I felt better and was able to fall asleep and allow the rest of my 2 boluses to finish.  I had 2 of the best popsicles I had tasted in my whole life and since I had kept them down for 30 minutes, requested to go home.  Apparently sitting still in a hospital bed is much different than driving in a moving vehicle.  I was sitting in the back of my dads SUV and yelled at him to pull over, much to my dismay... because he travels with my kids so often he has child safety locks on the back doors!!!  Thank goodness, Craig jumped out and opened the door just in time!  I laugh so hard thinking about it now... however I was NOT laughing then! 

After a shower and a good night (and days) sleep, I felt a whole lot better and began to get my strength and energy back.  Nevan however was not feeling great.  He was very upset by the fact that I was so sick and ended up in the hospital, Nylah was in bed and was none the wiser. Watching your mom be loaded into an ambulance would upset any child however a few days later we found out the real reason that Nevan was so upset.  He told his teacher that I got so sick because I sat too close to him the other day!!  Ughhh.... poor kid.  He thought I had caught his cancer and was so worried that I had to go through all the things he had to endure over the last few months.  He even asked me if I had a PICC line put in.  We then had a long conversation about how noone can ever catch what he has, just like he didn't catch his cancer from anyone else.  We also talked about how all of us are going to get sick many times in our lives even Peanut and Chaiyya will get sick.  I told him about how Chaiyya was bitten by a bee and went into shock.  The vet had to do many of the same things I had done including IV fluids and an ECG.  To this day we still don't really know what caused me to get so sick since Nylah and I ate the same things all day and she didn't get sick at all.  Perhaps I caught something while out on errands.

I think after a few talks, Nevan understood that although what he has is unique, everyone will get sick at one time or another and it will never be his fault. 

Cute Story of the Day:
Bob Munch's Mortimer:
'Clang clang, rattle bing bang
Gonna make my noise all day!
Clang clang rattle bing bang
Gonna make my Noise All day!"

Nylah's Version:
"Bang Bang, Rubba Dub Dub
Gonna sing my song today!
Bang Bang Rubba Dub Dub,
Gonna Sing my song all day!!"

NG (Dad)

After a lot of thought and discussion we have decide that it best to put Nevans NG (nose tube) back in. We have been monitoring his weight and nutrition for the past few weeks. He has lost 4 pounds since it was accidentally thrown up a month ago. We have tried to get him to eat but because of the chemo his taste buds aren't quite what they used to be.

Yes thrown up! I guess I should go back. Just after Halloween Mommy went out for a girls night. I was left in charge;)  I decided to make a fun dinner to make the night go well. Garlic bread seemed like a good idea. Bread, butter, garlic, cheese, simple. Perhaps I used too much garlic powder.While brushing his teeth Nevans stomach turned and then up came the garlic bread along with his nose tube. Tears and pain followed by an overwhelming sense of relief. He thus ran a fever that almost forced us to take him to the hospital for a 2 day stay. It broke the next day. I haven't been allowed to cook since;)

After a long discussion in the morning Nevan agreed to try and take his meds orally. Until now he has been doing a great job with minimal coercion and bribing. However the meds are no longer the issue. Nevan will eventually catch a flu bug. As of right now he doesn't have any extra body fat to deal with the dehydration it will bring. Also in order for the chemo to be as effective as it is prescribed to be he must have good nutrition. The chemo is slowly deteriorating his taste buds and thus makes him very fussy. We are trying our best to increase selection but even still hes just not interested. We were warned of this. So we have decided to have his NG tube returned until a few days before Christmas. This will allow his face to recover from the tape before we take pictures during the holidays. The Turkeys are being fattened for Christmas and so is our little monkey.

I took him yesterday to clinic and requested the tube be put in. I was suppose to be at work but Anita came down with a cold bug or something worse. It is not acceptable to have anyone visit the clinic who feels ill. Obviously we agree.

It was not an easy day. It was his week one Thursday. 1 finger poke,  1 leg needle, 1 chest port access, and his steroids start again. He didn't have much warning. It wasn't fair but telling him ahead of time gets him too worked up. I told him he was going to get the nose tube just before we started the treatment. I should have waited. It just made everything worse. He screamed through everything. I couldn't say or do anything. Everyone tried to talk him through it. Me, the nurses, even the social worker Nancy and her cool toys cant distract him. I hold him down once again, body and head and we all work together to get it over with. He screams out that he will be a good boy and eat his food. Everyone jumps to reassure him its not his fault. Once again everyone in tears..... The nurses are reminded its not just a job they do......Nevan has that affect.
Once its in he talks to us about it and makes his usual demands. Water please. Tape it. Hes very precise and has a routine. So proud of him as always. Now we are making a solid effort to fill him all day and make this traumatic procedure worth it.

Halloween (dad)

Ready...set...go!!!!
Wednesday morning. It's Halloween day, one of my favorite times of the year. If a vote ever came about to make it a national holiday I'd be the first one to the poll. I have nothing but fond memories as a young child celebrating Halloween. The cool night air, the dim orange light of jack o'
lanterns, the smell of the slowly cooking pumpkin, the excitement of everyone in the neighbourhood out of their homes and in the streets running around from house to house to show off their creativity in exchange for some sugar. What a perfect end to summer before everyone north of 40 hibernates for the next 6 months. I love it even more now as I get to watch my kids experience this spooky and playful event.

This year was a little more special than previous years. Because some children are either to ill to leave the hospital or just not well enough to be out door to door in the cold, McMaster has its own trick or treat event. At 10:30am on Halloween we pulled into the hospital parking lot. We went up the elevator to the second floor lobby. When we looked around we could see people in costumes from one end of the corridor to the other and on both sides of the isle. There was approximately 200 people standing around. I initially thought that all the trick or treators were lined up for candy. I then noticed that many were adults and that the kids were around the corner lining up and getting ready to go. The 200+ people were handing out the candy!! The line finally started forward and the candy began to fall into nevans giant spider-man pillow case. He quickly realized that candy could be grabbed from either side and so started weaving back and forth trying to get as much as he could. Nylah however being only 2 and not remembering last year was a little overwhelmed to say the least. She did not know why she was there or what was happening. She walked reluctantly from one end of the hospital to the other in nearly a straight line staring up at the make-up and mask faces. I had to keep asking her to keep walking or she would have stopped in shock of the pure volume of people. It didn't help that she was wearing a big eyed spider man costume, black mesh tutu and her always too cute pig tails pulled through her mask. She was SPIDER-GIRL!!!  A real character she is but not easily found on the costume shelf. Mommy found an infant one for $5, cut holes in the mask for the pigtails and put the tutu between the shirt and pants. That girl was the cutest kid there that day.

Her idea to be spider-girl of course was modelled after big brothers request to be the evil black spider-man from the third movie. Black spider-man is a one piece suit complete with bulging muscles. Once inside Nevan became a muscle flexing, posing egomaniac! His confidence was sky high in that suit. We decided to let him wear it to clinic the next day to see if it would help with his anxiety but that`s a story for another day. After gathering an entire pillow case of treats from 2 floors at the hospital we decide to leave. I thought it would be nice to have just one visit to McMaster that didnt involve medicine or pokes or anything related. We didnt even go to his clinic to say hi, he would come dressed in costume for them the next day.

While on our 1 mile candy hike a reporter stopped Nylah and I to take a picture for the Hamilton Spectator. I tried to get nevan and mommy in the picture but they had gone ahead to far and the reporter snapped his picture and moved on. Nylah was definitely the show stopper of the day!

After a great morning at MacMaster we came home to begin carving our pumpkins. Aunti, Uncle and baby Elliot (baby tigger) joined us for the festivities. Ill give you one guess as to what nevan wanted as a pumpkin carving. Yup Spider-man! Luckily Auntie has excellent drawing skills. 3 hours later and we had a spiderman pumpkin, an owl pumkin and a Number 1 pumpkin for baby Elliots first Halloween.

With the low temperature and wet ground we decided it was best if Nevan not go door to door this year. It turned out to be a fun night anyway. Nevans cosutme not only gave him super strength but the mask was the perfect protection from germs! The kids were both excited by every ring of the door bell. What a great day.

 

Normalcy (dad)

Such a hard word to define in the best of situations...Its Monday night the week after Halloween. Sorry Nevan that I haven't wrote in a while but as you know I have been doing lots of things for and with you around the house.
Aside from painting and fixing random things around our new house we have had lots of fun together here at home. So far we have watched Madagascar 1,2, and 3 at least 50 times each! Played PS3 for a few hundred hours and another hundred on the Nintendo DS.... Yes we had other fun too. We have had lunch in the playroom and puzzles and train sets set up. Nylah has had lots of fun playing with her dollies too. We get out to the backyard a bit but the mud is too much for even my boots right now. We are starting to get into some arts and crafts as well as daytime reading and writing. Your Mom and I will be finished with getting the house under control by next week so even more fun can be had while we are both still off work.

Sooo things are starting to get back to `normal`...Life still isn`t and never will be the same as before though. The one thing that keeps coming to mind is how Frodo felt after surviving the ring in Lord Of The Rings. Nerdy comparison I know. But it somehow resembles the sadness I still and will always fell no matter how quick and fully Nevan recovers. Not only have we lost quality happy moments with him through this summer but he still is missing out on so much because it just isn't safe for him yet.  Its getting difficult again to see him with his nose tube. We will being making a solid consistent effort next week to get him to take either liquid or pill orally and finally be rid of it. I miss his beautiful baby boy face behind that NG tube disguised as a black spider-man web...It just another reminder of the hospital stay, the IV tubes plugged in to him everywhere, the pokes, the sedation's, the vomiting and fevers, the screaming and the sadness of a mere 4 year old pulled into the disturbing world of cancer by no fault of his own.
Nevan does better with his situation than we do I think. He feels the restrictions on him but seems to compensate well. Today we went for a treat at tim hortons. We were driving back from having car cleaned when we both had to pee..We all decide to see this as an opportunity to have a snack and drink and have a normal family moment. The restaurant was empty for the most part. We let the kids choose their own treat. We pulled chairs around a table and huddled over our treats. Nevan didn't like his choice so we went and got more chocolate timbits. the he wanted water. I had to go out to the car. Nylah wouldn't sit by herself she had to sit in mommy`s lap. Yup normal has returned.... Then the stares start. People notice his NG tube and then his missing hair. We carry on and its an innocent enough thing to just notice. As a father and already hi strung guy I'm ready to deal with anyone who disrespects him. I hope that day never comes.
We I have a few more posts to catch up on. Exhausted though. Ill write again soon....

Writers Block

In the early days of last week, I sat and thought about what I wanted to say in  my speech to all the amazing people who contributed in even the smallest way to Friday Night's 'No One Fights Alone" Gala.  My thoughts began to go wild and the tears began to flow even before I started writing.   I realized at that moment that, even though there was so much I wanted to say,  there would be no way for me to get through a speech without turning into a crying mess and I let Craig speak on both of our behalf's.... even standing beside him at the Podium was too much.  I decided to use the blog to let everyone know my thoughts... safely behind the protection of my computer as I have so many other times. 

Today is Monday night and while my intention was to write as soon as I could on Sat morning... I now have another problem  ... No matter how hard I focus, I can't figure out what to say.  How do I properly thank everyone?... how do I let them know how much I appreciate everything they have done? How do I convey the intense gratitude I feel to have them in our lives?  I can't... Nothing will be good enough... But I will try. 

The Gala was an enormous success.  Craig and I were once again surrounded by warmth and love from friends, family and strangers.  It awes us every time to see how many people are willing to come out and support us, our family and our fight.

The morning of July 13th plays through my mind at least once a day with vivid detail.  Within a few hours, life as we knew it was over and we were now a family with a critically ill child.  A child that with his infections smile and caring ways, reminds us every day that so many of our dreams came true when he was born.  Only partially complete.... the arrival of our sweet, beautiful little girl in June of 2010 made our family whole.  We didnt have any idea exactly how much we needed and loved her until she arrived...she brings joy and excitement to even the most heart wrenching of days.  It is impossible not to smile with her around... she has many times become our rock through this process.  

Since Nevan's diagnosis, Chris and Jane, Nevan's grandparents haven't once begun a conversation with any other words except " How are you?".  Such a simple, cliche phrase that everyone uses... although asked... it is rare the asker really wants to know the true answer.  But with these 3 words, Chris and Jane let us know everyday that they were there for us, truly wanting to know how we were so that they could offer their help... what ever it was, what ever it took.  Those 3 words are fully engulfed with interest, concern, and un-wavering love.  It was within weeks that they began planning Friday's Gala.  They announced that they were cancelling their much anticipated trip away to celebrate their 20th anniversary and decided to put their time and effort into putting together this fundraiser instead.  With the help of the Dodge Family (a group of the most giving and caring people I have ever met in my entire life), Janna and Matt Earls, Robin and Mike Houston, Jen Peebles and Ken Buck along with a full list of participants, helpers and donators, this gala was perfectly put together right down to the last beautiful detail.  These people should know that they hold such a special place in our hearts and we will make very sure that Nevan always remembers who you are. 

Nana and Nanima are like second parents to Nevan and Nylah.  Having spent almost as much time with them as they do at our house, they are a big reason as to why Nevan and Nylah are as sweet, smart and respectful as they are.  Their world was also shattered in an instant, but they have held strong and offer their help any way they can.

Auntie Yvonne, Uncle Dave and Baby Elliott help to round out our circle of immediate family.  During Nevan's first days at the hospital, Uncle and Auntie being brand new parents themselves, showed up with posters, action figures, books and toys to help make the stark hospital blue room a bit more bareable.  Nevan and Nylah's faces light up at the mere mention that Auntie and Uncle are coming for a visit. They have always been there for us and our kids and we are so excited and honoured to now be able to offer the same support and love to our very own little nephew Baby Elliott.

Uncle Brent and Uncle Tom have also been instrumental in keeping little Nevan pre-occupied while his little world has been turned upside down.  Uncle Brent's tower of movies and video games got Nevan through many a tough procedure, while Uncle Tom's Spiderman collection kept Nevan's dream of one day becoming Spiderman going strong. 

Adding to the list are Auntie Medhini, Uncle Anoop, Akshay and Pooja (or Puder as Nylah affectionally calls her).  To explain it very simply... When we need them they are there... no questions asked.  They are in our corner no matter what and they remind us always that, that is where they will stay. It is true comfort knowing that we can always turn to them.

Finally, Nana #2 and family.  My Uncle Khemmy, Auntie Premila, Rickash, Kearan, and Priyanta.  This was our second family growing up.  They fill so many of our childhood memories and I am so grateful that they are now giving my kids the same types of memories.  Recently, not a day goes by that Nevan doesn't ask them to come over and is always showing off the latest 'cool toy' that Priyanta bought him on her last trip down to visit.  When asked who his best friends are, Nevan will always reply: "Nana #2".  They have been there for us since we were small and are now there for Nevan and Nylah... we always appreciate their love and support and are grateful to have them in our lives. 

My biggest thank you goes to Craig...I know in his speech he said that "if I had to, I could have done it alone".... although grateful for the kind comment... it is a big fat lie.  There is no way I could have made it through the last few months without him.  When I couldn't be around both kids at the same time, he took on the role of both mommy and daddy effortlessly and without hesitation.  From singing to Nevan to painting Nylah's toesies with bright pink Nail polish... he took over my role when I couldn't do it myself.  Both kids got to keep a sense of normalcy through such a hectic and crazy time because Craig made sure it happened.  By the 3rd week of Nevan's hospital stay, I was really only running on fumes.  Craig made sure I ate, slept and forced me to go home to get some much needed time away.  He would make numerous trips to the hospital in one day to make sure Nevan and I had the things we needed and would wake up extra early to make fresh chocolate chip pancakes so as not to interrupt our Sunday morning tradition. We will never be alone as long as we have each other.... the stronger the storm, the more polished the stones. 

Well, I know I didn't talk a whole lot about the Gala as I intended to... but our hearts are swollen with the love we felt from everyone and I felt it necessary to make sure those people who mean the most to us know that.  This list is SO FAR from complete.  There are far too many people to mention... from my old friends Amy, Jassie, Anjana and Christine... to our newly found friends that we have made over this journey... we love you all and our gratitude to you runs so very deep. 

Cute Story of the Day (sorry Grandpa ;)

Nevan is watching Madagascar 3 and asks me to get ready for the 'old part'

Me: "Hey Nevan how old do you think they are there?"

Nevan: "Oh... it isn't a number!"

Me: "What do you mean it isn't a number?"

Nevan: "You know... like Grandpa"

Me: "Grandpa isn't a number?"

Nevan: " Nope... he is just old!"

No One Fights Alone Gala

Anita and I are in the process of writing a blog to thank everyone for Friday Nights event. We are taking care to ensure that everyone is thanked. We are trying to make sure that we say everything we wanted to say. We promise to have it done in the next few days. Nevan has a busy Hospital schedule this week as well and we are busy making this an extra special haloween.
Please see below a copy of Craigs Speech from friday night.

Good evening everyone. I hope your all having a great time tonight. I wanted to take a few moments to thank everyone who was involved in making tonight’s event possible. The list is lengthy but I think everyone deserves recognition for doing such an incredible job and anyone that knows me knows speaking fast is something I tend to excel at.

I want to start by congratulating my parents (Chris and Jane Bidner) on their 20^TH wedding anniversary this past Wednesday. This past week they had holidays booked together to celebrate this great milestone in their lives, and like so many family and friends they immediately cancelled many plans or gave up free time to ensure that Nevan and his family were taken care of first.

The last time I stood in front of a crowd this size was at our wedding over 6 years ago. I held a scrap of paper with chicken scratch on it. It was short and simple and to the point but far overshadowed by the speeches of 2 men I have come admire in my life, Chris my stepfather and Harish my father in-law. With their guidance as strong men in my life I have learned how to navigate my way through this world. Whether it be with finances, career decisions or even marital advice. I am much stronger because of their ongoing support of me and my family. They are and always will be fathers to me.

Almost 5 years ago on November 27 2007 I was humbly honored with this same title. My son Nevan Harish Langlois was born. At 29 I still felt too young to be a father but was ready for the challenge either way. It wasn’t long before a bond was made and the pride of being father to such an incredible boy started to grow. I was lucky enough to be there for his first word “coooow”, see his first smile at only a few hours old and be the first one to make him laugh by flipping through the newspaper while he lay on my lap. Being a father is an incredible journey that is the most challenging thing I have ever done and is continually the most rewarding.

Nevan is a very sweet young boy. He is always happy and looking for ways to make others happy. He is kind and gentle. He has the ability to forgive even if no apology is given. He is a very good big brother to his little sister Nylah who is much different than him but equally as sweet and good natured. I’ve watched him hold her hand, play with her without being asked or try and show her how to do something when she is at her most frustrated. He is patient, thoughtful, sharing, and generous. He is the kind person we all should aspire to be. To be humble and honest he does not get these traits from me. However many of them are the same reasons I married his mother Anita. This is why however overwhelmed I am right now I am far from surprised at the support he has received from family and friends.

On Friday July 13^th Nevan was admitted to hospital and diagnosed with Leukemia. The emotions that can arise from your child becoming ill are overwhelming to the point of shock but you deal with it. You deal with it because you have no choice. They need you and you do what is needed. The foundation for his recovery however was laid years ago by the woman who gave birth to him. She is an amazing mother to our children. Her maternal instinct and ability to nurture Nevan is a huge part of why he is now home safe with us. She deserves far more credit than I can put in one speech but everyone should know that if she had to do it alone she could have.

Nevans health is not only dependent on the amazing Doctors and Nurses at McMaster children’s hospital. He fights and one day will survive Cancer not only by the complicated and precise medicine he has constantly coursing through his veins, but by the support of his Family, friends and his community. Happiness is crucial to fighting any disease. His favorite place to be next to home is Nana and Nanimas house. He has spent much of his child hood at their house. They are also a part of why he has become the person he is today. Nevans Grandmother (Anitas Mother) NANIMA is an extremely important part of our family. Our family get-togethers are centred around the warm environment of her home, hospitality and cooking. She works the hardest of anyone in the family to ensure we are a family. All four of Nevans Grandparents give their love and undivided attention to their grandchildren. The sense of family our kids receive from them will stay with them for life. Nevan has cried out for Grandma many times recently when being asked to take medicine or clean up his mess. I would too. The medicine tastes horrible. We’ll work on the clean up routine...

Smiles also come in the dozens from time spent with Uncle Dave and Auntie Yvonne. No one horses around like Uncle or bakes like Auntie. Nevan is also very lucky to have 2 nana’s appropriately named nana #2. Nanima #2, Aunti Priyanta (who has donated a few of the awesome sports tickets and jerseys)and her brothers Keeran and Rakash. He even has a second uncle and family. Anoop, Medhini, Pooja and Aikshy. Nevan and his sister are spoiled by all of them and whenever we need anything they are there to help.

Which brings us to tonight’s event. One of the many reasons we are all here is help. We needed help, and without asking we were offered that help. This event is the fourth and final fundraiser that was suggested and carried out by people that wanted to help. They understood that having an ill child means that for a short period in time incomes must drop while both parents take the time to help their child recover. Having an ill child can also create some unanticipated expenses like extra gas for transportation to the hospital, meals, special equipment, medication not covered by plans, and 3 for a dollar Mr Noodles cravings..

To this day we are still receiving meals cooked by our neighbours, cash from anyone from family to complete strangers, gas cards, Tim Horton’s cards, and more. Because of the generosity of so many Nevan, Nylah, Anita and I have not gone without anything. Every bill has been paid on time because so many cared enough about us. For this we will be forever grateful and will one day try and return the good fortune to our community and others in need.

 

 

 

It is with a heart full of love and appreciation that Anita and I would like to thank the creators and facilitators for tonight’s event. Their efforts went much further than just the planning I’m sure. We know how busy anyone’s life can be in this fast world we live in, and to have people take hours out of their own day for the last few months to organize and solicit for an event like this is extremely thoughtful.

Jen Peebles and Ken Buck

Robin and Mike Houston

Janna and Matt Earls

These three couples have helped with soliciting vendors and other sources for many of the prizes you see here tonight. They are all good friends of my mother Jane Bidner who generously rented this hall for tonight’s Gala. Special thanks goes out to her and Chris for working so hard for the past 2 months on tonight. It’s more than we could have imagined. We know that no matter what life throws at us you’ll be there to fight alongside of us.

The next Family I would like to thank have already done so much since the start of Nevans Journey. Immediately upon getting the news they passed help along to us through my mother. Then within weeks the decision was made to host this event. And just recently they delivered a generous donation on behalf of the Knights of Columbus. Steve and Donna Dodge have been helping people since before I was born. They have been helping other families through charity and church. They have been fostering children for years. Steve and Donna deserve more than just a thank-you for tonight they deserve a thank-you for what they do every day. If everyone made the effort to take care of each other like they do we would probably solve most of the world’s problems. Proof of their great commitment can be found in their children Christina, Jason, Jeff, Molly and William. All of which have been an immense help with everything from prizes and ticket sales to some handmade photo cards. Congratulations to Jeff and his wife who had a baby two days ago. Welcome Baby Hannah. Thank-you so much Dodge Family. You have encouraged Anita and me to do more for our community and our children.

Finally we have made a short list of people that we would like to thank for tonight as well as the past few months. Honestly the list is enormous. Our future blog posting will hopefully cover any that we have missed.

·       Jassie Dhaliwal, Anjana and Ateet Patel for running our first bbq fundraiser

·       The Beer Store for holding 2 BBQs, a day of with pay raffle and sports ticket raffle and donating to tonight’s gala

·       Dr Laura and Active Health Associates for giving Nevan a fun day complete with bouncy castle, face painting and horse riding.

·       Jessica at  live the moment photography who held a mini photo session in nevans honour to help raise funds

·       The amazing staff at kinsmen daycare who have always supported nevans health and happiness

·       Our friends who have spoiled both kids recently.

·       Our old neighbours who have always helped with home improvements or random small favours Brad, Joanne Kaylee, Allysa, Gavin and Nevan’s friend Taya

·       Our new neighbours who cook meals and offer open arms Sangeeta and Amit Ari

·       My good friend Tom who is always there when I ask him

Specifically with regard to tonight we thank the follow

·       Acklands Granger

·       Arena bar and grill

·       Arnverdale Holsteins

·       Ashley Baker

·       Melanie Berard

·       My step brother Jeff Bidner

·       Ken and Joan Bidner

·       Bonnies Place

·       Brafasco

·       Brick Brewery

·       Carslberg brewery

·       Don Chamberland

·       The Co-operators

·       Chris Couture

·       Craig Bowman roofing

·       Stuart Dykstra

·       F  and M brewer who happens to make our favorite beer Stone hammer Pilsner

·       Colin and Lori Ferguson

·       Freddies hairstyling

·       Linda Fritz

·       Marko Gazdic

·       Guelph Storm

·       Home Furniture

·       Velma Houston

·       Brad Howell DJ services

·       KIA motors

·       My brother Jason Langlois

·       Linamar

·       Mark and Carlotta lynch

·       Maksteel

·       Manhattan Pizza

·       Manor Hotel

·       MCG engineering

·       McDonalds Restaurant

·       Al McElhone

·       McPhee Auctions

·       Milburns Auto Sales

·       Molson Brewery

·       Tracy Moore

·       Moosehead Brewery

·       NKC Canada

·       Marion and Richard Oakley good friends of my parents and parents to my first baby sitting gig

·       Outdoor Services

·       Resource Equipment

·       Robinsons Flowers

·       Sue and Ian Robinson also good friends to my parents and familiar face at my doctors appts

·       Salon Gii

·       Shoppers Drugmart on behalf of my step sister Lisa Bidner

·       Sleeman Brewery

·       Thomas Smythe

·       Springfield Golf course

·       State Farm Insurance

·       Steamwhistle Brewery

·       Swiss chalet

·       June switzer

·       Binil Tahlan

·       Tim hortons

·       Toronto bluejays

·       Johnny Venezuela

·       Carrie Van Zutphen

·       Volvo

·       Wellington Brewery

·       The Works restaurant

·       Zehrs

·       And Last is reserved for nevans special aunty.. Yvonne Chan now Yvonne Emrith for Yvonne Chan Cakes.

I’d like to thank Guelph place for the hall rental tonight our DJ, Auctioneer(s), Stephen Garland for the black jack games and everyone who helped set up and run the event.  And I know there is so many more to thank.

Nevans Journey is the name of our blog we started shortly after his diagnosis. It was meant to keep everyone informed about his daily health. It has become so much more than that. We have made ourselves extremely vulnerable by allowing so many to see behind closed doors. We were initially shocked to find that so many had read the blog and that they also appreciated us telling the story. I finally understand why. It’s because everyone who follows and thanks us and who reaches out to help us understands one important principle. Without each other we have nothing. Some put their faith in god.... I put my faith in our children, family our neighbours in short humanity. Together is how humanity got this far and together is how nevans journey will continue and it will continue for many years to come...Thank-you all for coming tonight. We have had a great time and hope you did as well. Thank you.