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.