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It is with a heavy heart that we invite our friends, families and Active Health friends and family to join us in support of a beautiful family. Recently, one of our families received the devastating news that their 4 year old son, Nevan has Pre B Cell Acute Lymphoblastic Leukemia. As a family, they have stayed strong and have forged forward on Nevan's TWO YEAR journey through chemotherapy. As a mother, my heart breaks for Craig and Anita (and their families). Their world has been turned completely upside down. I truly believe that it is our responsibility as a community to extend a helping hand, open our hearts and give our support to a family that will sincerely and gratefully appreciate it!
Active Health Associates, with Nevan’s Family and Friends invite you to join us for a Family FUN Fundraiser. September 29, 2012 @ 11 - 3pm BBQ, Bouncy Castle, Face Painting, Games, Music, Cambridge Fire Dept. with Trucks! Bake Sale, Raffle and Much, Much More!! Raffle tickets can be purchased at Active Health Associates from September 17 – September 29 Prizes include: One year of FREE Chiropractic, $300 M&M Meats, FREE Photography Sessions, NHL Hockey Jerseys and HUNDREDS of DOLLARS in additional gifts! We would like to sincerely thank all the local businesses for their incredible support and donations! Please, join us to support little Nevan in his journey... http:// With sincere thanks, Dr. Laura and the Active Health Associates Team Craig and Anita Langlois and their Families and Friends |
Friday, September 7, 2012
FAMILY FUNDRAISER: Sept 29th
FUNDRAISER Sept 29th: Mini Photography Sessions
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10 years ago today I lost my amazing Grandfather to cancer. Nearly two years ago I did a fundraiser for a little girl named Camryn who is currently doing quite well, but still fighting her way to better health.
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Tuesday, September 4, 2012
Going up!!
Things are finally beginning to look up. Nevan's fever broke and has not been back for over 48hrs, his rash has gone down, his lips are healing nicely and has begun to eat again. A true sign he is feeling better? He smiled and even laughed yesterday.... For so many weeks even the attempt to tickle him brought out grunts and groans, but yesterday it was an out right giggle... Best sound ever! He was also expected to be transfused both blood and platelettes today, but his marrow has kicked into high gear and brought both levels up on his own!
Nevan has been weaned off his morphine now and this morning I am bugging the nurses to send us home. I have asked twice already and it is only 9:30am. Of course the decision isn't theirs, it is up to Nevan's oncologist, but the nurses can be pretty persuasive so I'll hit them first.
Nevan needs to go home. He has had enough of this place and it has taken everything I can think of to keep his spirits up. We downloaded some new games on the iPad, I got him hooked on Pinterest (the funny animal pics crack him up) and we took the sheets off the bed and built a fort using his IV pole and Vitals Cart. (this lasted until someone else needed the vitals cart and the nurse had to change Nevan's IV bags... But fun while it lasted!). I even did the ever so popular "drop the ball and pretend to go down the stairs to get it' at the foot of his bed - always a big hit! I am running out if gimmicks however and Nevan is tuning out of patience. When he was sick, he seemed to understand why he was here, but now that he is feeling better, he just doesn't get it.
His appetite has come back with a vengeance and with no steroids! He is feeling the sores in his stomach now and he chooses to sooth the discomfort by eating as much and as often as he can... The best part? The noodle cravings have switched to salad! Crunchy salad loaded with Kraft Ranch dressing (made the mistake of giving him Hellmans once... Didn't fly!)
If we do get to head home today I suspect that we will see some brighter days from here. The next two weeks are free of chemo to give Nevan a break and we only have a few oral meds to administer. After that we will start to treat his Central Nervous System and he will be sedated twice a week for 2 weeks. They will also begin his intramuscular injections, the first of 30 he is receive.
During some of the darker times, we told Nevan about the fundraiser 'party' that is being put together for him. He has been asking to go to his party ever since. He doesn't understand that it is weeks away and we don't want to get him overly excited in case it turns out he can't go. Even if he feels well, it will depend in his counts... We may take him over during set up and let him roam before the event starts.
Cute Story of the Day
Nevan starts whimpering and fussing around 1:00am
Me: "Nevan, what's wrong?"
Nevan "Noone's rubbing my back!"
Me: "Pardon?"
Nevan: "I woke up, now I am trying to go back to sleep..... Someone should be rubbing my back!"
Me: "is that someone me?"
Nevan: "yes"
Me: ugh "ok... How's this?"
Nevan: "Now that's more like it! ... Goodnight"
I've created a monster
Nevan has been weaned off his morphine now and this morning I am bugging the nurses to send us home. I have asked twice already and it is only 9:30am. Of course the decision isn't theirs, it is up to Nevan's oncologist, but the nurses can be pretty persuasive so I'll hit them first.
Nevan needs to go home. He has had enough of this place and it has taken everything I can think of to keep his spirits up. We downloaded some new games on the iPad, I got him hooked on Pinterest (the funny animal pics crack him up) and we took the sheets off the bed and built a fort using his IV pole and Vitals Cart. (this lasted until someone else needed the vitals cart and the nurse had to change Nevan's IV bags... But fun while it lasted!). I even did the ever so popular "drop the ball and pretend to go down the stairs to get it' at the foot of his bed - always a big hit! I am running out if gimmicks however and Nevan is tuning out of patience. When he was sick, he seemed to understand why he was here, but now that he is feeling better, he just doesn't get it.
His appetite has come back with a vengeance and with no steroids! He is feeling the sores in his stomach now and he chooses to sooth the discomfort by eating as much and as often as he can... The best part? The noodle cravings have switched to salad! Crunchy salad loaded with Kraft Ranch dressing (made the mistake of giving him Hellmans once... Didn't fly!)
If we do get to head home today I suspect that we will see some brighter days from here. The next two weeks are free of chemo to give Nevan a break and we only have a few oral meds to administer. After that we will start to treat his Central Nervous System and he will be sedated twice a week for 2 weeks. They will also begin his intramuscular injections, the first of 30 he is receive.
During some of the darker times, we told Nevan about the fundraiser 'party' that is being put together for him. He has been asking to go to his party ever since. He doesn't understand that it is weeks away and we don't want to get him overly excited in case it turns out he can't go. Even if he feels well, it will depend in his counts... We may take him over during set up and let him roam before the event starts.
Cute Story of the Day
Nevan starts whimpering and fussing around 1:00am
Me: "Nevan, what's wrong?"
Nevan "Noone's rubbing my back!"
Me: "Pardon?"
Nevan: "I woke up, now I am trying to go back to sleep..... Someone should be rubbing my back!"
Me: "is that someone me?"
Nevan: "yes"
Me: ugh "ok... How's this?"
Nevan: "Now that's more like it! ... Goodnight"
I've created a monster
Saturday, September 1, 2012
through the window...(dad)
It's Saturday Morning on labour day weekend. Its difficult to believe how fast time has gone by. We have lost an entire summer of family fun in the sun. Nylah and I have just woke up. I can still count on my hands how many times we have been able to all wake up together in the same house this summer. Nevan didn't get to experience his first summer break from school. Not only that but he will miss being in class because for the next 6 months he will have to be schooled from home. I'm confident though that between Anita and I and his school he will miss as little as possible. Even Nana and Nanima will help as they have done since day one with Nevan's social development.
Nevan is still in hospital today and will be for at least a few more days. The last 4 days have been about the same. Fevers, diarrhea, red spots all over his body among a few other uncomfortable side effects from the methotrexate. This will hopefully be the lowest low the doctors have told us. He has honestly never felt worse. I watched him all day yesterday and he was finally 'comfortable' from the constant drip of morphine they have given him. He slept almost the entire time I was there and is still doing about the same. I wont get into too much detail but Anita and I were up every 30 minutes the previous nights to help him through. He definitely needs the sleep.
The few minutes he was awake yesterday were quiet ones. I asked him when he woke if he wanted to just sit in my lap and cuddle. He just shook his head yes. He has a lot of "NO'S" right now so a yes is a really big yes. He just melted into my chest and we sat quietly. We played a little PS3 but he wanted me to play while he watched. He was too tired and sore. Later while cleaning the room I noticed he had woken up from his second nap. He was lying on his side starring out the window. The guard rail on his bed was raised so he had to peer through the small handle slot in order to see the window. The part of the window he could see out was probably no more than the top of the trees because of the angle he was at as well. The look on his face was pure fatigue and mental exhaustion. At 4 years old I wonder if he can even remember what his life was like before all of this. We just want him to get healthy and come home so we can remind him. These are the darkest days for sure.
Anita and I are working hard at home to organize the fundraisers we have planned. I'm in awe of how many people are willing to donate their time, ideas, prizes and money. We have had great support from many stores within our community. We are very excited and will be ready to advertise specifics soon.
At this very moment our financial situation is dire. As most people know we purchased our forever home one month before Nevan got sick. So life is more expensive in so many more ways than it was just 3 months ago. Anita has applied for support and we are still waiting for a decision to be made. I was on disability insurance through my company which has since been withdrawn and is under review. It is expected to resume next week after an entire month without pay. To make matter worse is the battle that stands before us over a $20000 insurance policy we have on Nevan that has been declined. There was a 90 day moratorium on cancer. This criteria was never told to me when I purchased the plan through my company benefits. There will be ongoing attempts on my part to fight this decision......I'm trying my best to focus on the numerous positive people now coming to our help as opposed to the very negative situation lingering. Sometimes I struggle with it.......
Nevan is still in hospital today and will be for at least a few more days. The last 4 days have been about the same. Fevers, diarrhea, red spots all over his body among a few other uncomfortable side effects from the methotrexate. This will hopefully be the lowest low the doctors have told us. He has honestly never felt worse. I watched him all day yesterday and he was finally 'comfortable' from the constant drip of morphine they have given him. He slept almost the entire time I was there and is still doing about the same. I wont get into too much detail but Anita and I were up every 30 minutes the previous nights to help him through. He definitely needs the sleep.
The few minutes he was awake yesterday were quiet ones. I asked him when he woke if he wanted to just sit in my lap and cuddle. He just shook his head yes. He has a lot of "NO'S" right now so a yes is a really big yes. He just melted into my chest and we sat quietly. We played a little PS3 but he wanted me to play while he watched. He was too tired and sore. Later while cleaning the room I noticed he had woken up from his second nap. He was lying on his side starring out the window. The guard rail on his bed was raised so he had to peer through the small handle slot in order to see the window. The part of the window he could see out was probably no more than the top of the trees because of the angle he was at as well. The look on his face was pure fatigue and mental exhaustion. At 4 years old I wonder if he can even remember what his life was like before all of this. We just want him to get healthy and come home so we can remind him. These are the darkest days for sure.
Anita and I are working hard at home to organize the fundraisers we have planned. I'm in awe of how many people are willing to donate their time, ideas, prizes and money. We have had great support from many stores within our community. We are very excited and will be ready to advertise specifics soon.
At this very moment our financial situation is dire. As most people know we purchased our forever home one month before Nevan got sick. So life is more expensive in so many more ways than it was just 3 months ago. Anita has applied for support and we are still waiting for a decision to be made. I was on disability insurance through my company which has since been withdrawn and is under review. It is expected to resume next week after an entire month without pay. To make matter worse is the battle that stands before us over a $20000 insurance policy we have on Nevan that has been declined. There was a 90 day moratorium on cancer. This criteria was never told to me when I purchased the plan through my company benefits. There will be ongoing attempts on my part to fight this decision......I'm trying my best to focus on the numerous positive people now coming to our help as opposed to the very negative situation lingering. Sometimes I struggle with it.......
Wednesday, August 29, 2012
the "bead" goes on......
Well, the good feelings that came along with the remission diagnosis was pretty short lived. Nevan is again earning his bravery beads at a fast and steady rate.
Since he was admitted for his high dose methotrexate, Nevan has gone down hill. Today he sits very still in his bed while on a steady morphine drip for comfort. Nevan's fever keeps coming back with hardly a break with the meds. His heart rate is very high and sometimes spiking close to 200bpm. His little body is trying to fight so many things right now. Nevan's lips are swollen, kankered and bleeding, his throat (although they can't see it) they suspect is the same. He has a rash covering his whole body and his scalp and chest are very itchy. His armpit is sore with a possible blood clot and his skin is so sensitive that it is peeling away with his bandages.
With about 5 different meds coursing through him at any one time to try and combat these new developments and nurses and drs constantly checking on him doing different tests.... Nevan is getting pretty fed up. He says he is not mad or sad, just tired of being sick. I have to agree... I am tired of him being sick. When Nevan was first diagnosed, he was feeling pretty good.... Technically much sicker than he is now, but he wasn't in as much pain. Craig and I were so happy to see him feeling fairly well, but devastated at the diagnosis. Now the tables have turned 180 degrees. We are elated by the result of remission but devastated having to see him this way... In some ways it is harder than the first few days.
Although he doesn't smile anymore and he hasn't laughed in weeks, he is still in there and lets us know often. Even though he can't really eat... The request for noodles are still coming in! He also tricked me into thinking he has to go pee again and he gets mad at the TV when he can't get by a certain spot on his video game.... Definitely a trait passed down from daddy!
Craig and I are keeping our minds occupied with various fundraisers that are quickly coming together. We have a couple of larger ones coming up.
1. A family fun day in cambridge on Sept 29th. Complete with...
BBQ
Bouncy Castle
Face Painting
Rummage sale
Bake Sale
And much more
We also have many awesome prizes up for raffle
2. A Jack and Jill type of event on Oct 26th in Guelph
This one will be more for the adults.... In the evening with lots of games and raffle prizes as well. We may even make it a Halloween shin dig!
3. Also on the 29th Jessica from Live The Moment photography is holding mini photo sessions. She is donating the proceeds to Nevan. She is an amazing photographer and if you are looking for fall pictures or Christmas gifts, let her know. All details will be posted in a separate post soon. Details are currently posted on my Facebook page however... Anita Emrith-Langlois.
These are all the public events we have on the go so far. Many are pulling together to help us privately as well and we are so grateful! Full details about the above events will be posted very soon once all is finalized.
Cute story of the Day
I started coughing like crazy after taking a sip of my coffee...
Nevan "Mommy what's wrong?!"
Me: "I'm OK Nevan, I just swallowed down the wrong tube"
Nevan "Oh.... .... I always swallow down the right tube.... I'll show you how later"
Thanks Nevan :)
Since he was admitted for his high dose methotrexate, Nevan has gone down hill. Today he sits very still in his bed while on a steady morphine drip for comfort. Nevan's fever keeps coming back with hardly a break with the meds. His heart rate is very high and sometimes spiking close to 200bpm. His little body is trying to fight so many things right now. Nevan's lips are swollen, kankered and bleeding, his throat (although they can't see it) they suspect is the same. He has a rash covering his whole body and his scalp and chest are very itchy. His armpit is sore with a possible blood clot and his skin is so sensitive that it is peeling away with his bandages.
With about 5 different meds coursing through him at any one time to try and combat these new developments and nurses and drs constantly checking on him doing different tests.... Nevan is getting pretty fed up. He says he is not mad or sad, just tired of being sick. I have to agree... I am tired of him being sick. When Nevan was first diagnosed, he was feeling pretty good.... Technically much sicker than he is now, but he wasn't in as much pain. Craig and I were so happy to see him feeling fairly well, but devastated at the diagnosis. Now the tables have turned 180 degrees. We are elated by the result of remission but devastated having to see him this way... In some ways it is harder than the first few days.
Although he doesn't smile anymore and he hasn't laughed in weeks, he is still in there and lets us know often. Even though he can't really eat... The request for noodles are still coming in! He also tricked me into thinking he has to go pee again and he gets mad at the TV when he can't get by a certain spot on his video game.... Definitely a trait passed down from daddy!
Craig and I are keeping our minds occupied with various fundraisers that are quickly coming together. We have a couple of larger ones coming up.
1. A family fun day in cambridge on Sept 29th. Complete with...
BBQ
Bouncy Castle
Face Painting
Rummage sale
Bake Sale
And much more
We also have many awesome prizes up for raffle
2. A Jack and Jill type of event on Oct 26th in Guelph
This one will be more for the adults.... In the evening with lots of games and raffle prizes as well. We may even make it a Halloween shin dig!
3. Also on the 29th Jessica from Live The Moment photography is holding mini photo sessions. She is donating the proceeds to Nevan. She is an amazing photographer and if you are looking for fall pictures or Christmas gifts, let her know. All details will be posted in a separate post soon. Details are currently posted on my Facebook page however... Anita Emrith-Langlois.
These are all the public events we have on the go so far. Many are pulling together to help us privately as well and we are so grateful! Full details about the above events will be posted very soon once all is finalized.
Cute story of the Day
I started coughing like crazy after taking a sip of my coffee...
Nevan "Mommy what's wrong?!"
Me: "I'm OK Nevan, I just swallowed down the wrong tube"
Nevan "Oh.... .... I always swallow down the right tube.... I'll show you how later"
Thanks Nevan :)
Saturday, August 25, 2012
The Beginning of the end........(dad)
Its now 5pm Saturday night. Its a beautiful sunny hot day near the end of August. We should be having a family dinner together. Maybe some BBQ and some cool drinks. Nylah would be throwing her food on the floor and saying 'NO' to something. Nevan would be munching away slowly at the only thing on his plate he even remotely liked. Ah the good ole days...
Kidding aside today is not what we expected. I just got home from a night stay with nevan at the hospital. The day went okay considering neither of us slept. He then napped the entire morning away to make up for it. His mood is awesome though. He is happy and joking and making light of the situation now. He ate noodles for breakfast, noodles for lunch, a KITKAT for snack and I'm sure Mommy will make a nice batch of her world famous........Mr Noodles pack for dinner.
His health could be better. We are already upset that his one night stay was not exactly the truth. He now is scheduled to be in hospital until Monday the earliest to clear him of the methotrexate. Thats yet another word I no longer need to spell check... As of this evening we have a new set of problems to clear as well. Nevans temperature has risen, his heart rate up and has just been sent for a chest xray. He has had a nasty cough for days now. This cough is made worse by the NG tube down his throat. Dr's are now trying to rule out the cause of this cough. His heart rate and temperature change may be a result of an infection in his well sealed PICC line entry point. Perhaps it's been sealed too long and is rebelling with a skin infection. We would love to get rid of his PICC line and replace with a PORT (not a well aged cooking sherry found in my collection) but there are other factors at play still that may not make that option safe. We should have some answers in the coming days on all of this. In the mean time Nevan is enjoying his relaxing stay in a private room with his own TV.
Funny story of the day;
the nurse comes in with a syringe the size of a turkey bastor.
I ask what it is.
nurse; "it's his glutamin for the day mixed with water, it is 60ml "
me; "where does that go?"
nurse; "his NG tube"
me; theres no way your giving him that on top of the feedings he's had and having right now. Plus he's drinking and eating noodles. I'll mix it with water or juice or his yogurt for later."
nurse; " oh okay that's fine, ya that is kind of a lot."
I show nevan the syringe and tell him he needs to drink more or they will have to push that syringe through his tubby everyday. Later in the day I notice he's drinking his juice with glutamin 10 times faster than usual. I ask why he's drinking so fast. He says " I don't want the big needle put in me"...I have the image from a cartoon from the 50's of coyote being chased by someone with a giant syringe. Nevan makes me laugh constantly..
Kidding aside today is not what we expected. I just got home from a night stay with nevan at the hospital. The day went okay considering neither of us slept. He then napped the entire morning away to make up for it. His mood is awesome though. He is happy and joking and making light of the situation now. He ate noodles for breakfast, noodles for lunch, a KITKAT for snack and I'm sure Mommy will make a nice batch of her world famous........Mr Noodles pack for dinner.
His health could be better. We are already upset that his one night stay was not exactly the truth. He now is scheduled to be in hospital until Monday the earliest to clear him of the methotrexate. Thats yet another word I no longer need to spell check... As of this evening we have a new set of problems to clear as well. Nevans temperature has risen, his heart rate up and has just been sent for a chest xray. He has had a nasty cough for days now. This cough is made worse by the NG tube down his throat. Dr's are now trying to rule out the cause of this cough. His heart rate and temperature change may be a result of an infection in his well sealed PICC line entry point. Perhaps it's been sealed too long and is rebelling with a skin infection. We would love to get rid of his PICC line and replace with a PORT (not a well aged cooking sherry found in my collection) but there are other factors at play still that may not make that option safe. We should have some answers in the coming days on all of this. In the mean time Nevan is enjoying his relaxing stay in a private room with his own TV.
Funny story of the day;
the nurse comes in with a syringe the size of a turkey bastor.
I ask what it is.
nurse; "it's his glutamin for the day mixed with water, it is 60ml "
me; "where does that go?"
nurse; "his NG tube"
me; theres no way your giving him that on top of the feedings he's had and having right now. Plus he's drinking and eating noodles. I'll mix it with water or juice or his yogurt for later."
nurse; " oh okay that's fine, ya that is kind of a lot."
I show nevan the syringe and tell him he needs to drink more or they will have to push that syringe through his tubby everyday. Later in the day I notice he's drinking his juice with glutamin 10 times faster than usual. I ask why he's drinking so fast. He says " I don't want the big needle put in me"...I have the image from a cartoon from the 50's of coyote being chased by someone with a giant syringe. Nevan makes me laugh constantly..
Friday, August 24, 2012
...and the results show.....
REMISSION!!!
Ahhhhhhhhhhhhh. (huge sigh of relief!)
The oncology resident who has seen Nevan many times before, walked into Nevan's room this morning with an unusually large grin on her face and only said one word.... Remission! Wow... What an amazing word. Craig was at the grocery store doing the ever so important "noodle" run and I called him and told him the news. It was short and sweet as the people behind him in line were getting annoyed, but it got the point across and he called the rest of our family to let them know. Now I was ready to tell Nevan...who as usual was lost in his TV show and didn't hear a word the dr said.
I walked over and sat in front of him on his bed. I had a huge smile on my face and was very excited to let him know what was making me so happy. I took his hands and told him that the dr just told me that the bugs in his blood were gone! I told him that all the strength and bravery he was able to show over the last month killed all the bad bugs, which is called remission! I don't think my smile could have gotten any bigger or my eyes wider, but Nevan's reaction was not what I expected.... He burst out crying.... I am not sure he really understood what I was telling him as we never once told him what 'no remission' would mean. I asked him why he was crying and he just said "I don't know, but I need a hug" I really didn't know what to say to him at that point so I just joined him. I suspect he felt a sense of relief and a sense of pride at what he was able to accomplish.... I am not exactly sure what I felt...just happy... So happy... And crying seemed to be the appropriate response at that time. So Nevan and I gave each other the biggest tear soaked hug ever! Nevan's tears were quickly replaced with hunger pains and my spot on the bed was soon replaced with a bowl of noodles..... :)
What exactly brought Nevan to this point over the last 6 weeks? This.....
1 ambulance ride
2 bone marrow biopsies
1 PICC Line
3 lumbar punctures
3 emergency room visits
47 blood draws
6 blood transfusions
5 platelette transfusions
4 sedations
5 dressing changes
5 NG tubes
93 doses of Chemotherapy oral steroids
67 doses of oral stomach meds
12 doses of IV chemotherapy
224 medical mouth rinses
6 doses of morphine
30 doses of antibiotics
The amazing drs and nurses at McMaster Children's hospital
Nevan's unbelievable strength, courage and resiliance
And of course you! None of us could have made it through this far without the love and support from our Family and friends. From the kind words to the yummy meals, all of it is helping to save Nevan's life and we thank you from the bottom of our hearts.
Our journey is far from over.... There is still a pretty tough road ahead as we start to treat Nevan's Central Nervous System and begin maintenance therapy to ensure the cancer doesn't return. Nevan's Marrow has also been sent away to Boston to find out if he has Minimal Residual Disease. If those numbers come back unfavourably, this could push Nevan into a high risk for relapse and we will have to take on a harsher course of treatment..... But we will cross that road when we come to it... Today is a happy day!
Cute story of the Day:
Nevan is hooked up to a feed, IV chemo and a potassium drip. He has 2 bandages on his back from his procedures yesterday and is very weak in his knees and hips. I just walk in from getting us breakfast and a much needed coffee
Nevan: "Mommy! You took too long, I need to go peeeeeeeeeeeeeee!!!!"
I run in spill my coffee on my bed, throw down our breakfast on the tray and drop our only utensils on the floor, untangle Nevan's lines, pick him up quickly and as gently as I can, stand him up, get his pee pot ready and look up to see Nevan has a huge smile on his face....
Me: "what?"
Nevan: "I was kidding!"
Me: "what?!"
Nevan "I made a joke!"
Me: "yes you did.... It was very funny.... I'm going to get another coffee"
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