It has been over a week since Craig and I have blogged. We blame it on the fact that Nevan's good moods have continued and we are taking full advantage! He has started the CNS phase of his treatment and breezed through his first sedation. He woke up happy, ate a full bowl of noodles and we were home by lunch.... Just in time to eat another bowl of noodles!
We also got the amazing news that Nevan's bone marrow is doing it's job and his counts have sky-rocketed. His oncologist has given him the ok to leave the house and have some fun and that is exactly what we have been doing! He still can't be in public crowds especially indoors, so we have been taking advantage of the great weather recently. Picnics, nature walks, feeding the ducks at the park and fishing at Shades Mill. Today was the best day of all. Up until today, Nevan has been very weak on his feet, riding in his old stroller or wagon every time leave the house. Today, he decided he was going to walk.... So he did. He walked almost the full path at riverside park and was having a great time. Nylah also had a great time but didn't fare as well. Curious little Nylah, who needs to touch and examine everything possible, ran her hand across some wood and got 7 splinters in one hand... all deep into her baby soft skin. We have no idea how to deal with that one! Cancer we have a handle on... Splinters are a new one!
Last week was very busy with appointments, meetings, nurse visits etc, everyday was taken up with something. One of the more amusing things we did was visit Nevan's SK class to let them know why Nevan wasn't attending school. Nurse Claire from McMaster sat infront of 20 something wide-eyed little people all patiently sitting 'cris cross apple sauce' on the reading rug. As she explained why Nevan was away and what exactly cancer was, in particular that you can't "catch" cancer, hands were shooting up left right and center ready to share stories of when they were sick. The younger ones were plucked one by one as the velcro on their shoes or zippers on their sweaters became too hard to ignore. For the most part, they all did rather well. At the end of the talk Claire asked the boys and girls what they could do to let Nevan know they were thinking about him. Some kids recommended cards, others stories, one little girl very excitedly shared her thoughts ... " I could give him 12 dollars!"... Hilarious! One little one insisted that when he was done his card he would come to our house and put it through Nevan's window. What started out as a rather emotional visit for Craig and I, turned into a huge reminder that Nevan will be just fine. Children are innocent and inquisitive and find amusement and joy in places adults wouldn't even think to look. Although Nevan has no idea, he has been the one helping us through each and everyday... Our emotions mimic his, and he can break even the most stressful moments with one of his funny lines.
Next week, Nevan will go into the OR to have his PICC line removed and a Central Port put in. We have been waiting for this moment for a long time. Nevan has stopped using his right arm and has become very protective of it. The skin under his dressing is thin and raw and comes away with each peel of his bandage. This surgery is a very welcome one and will improve Nevan's quality of life even more. We will also begin to train Nevan to swallow pills so that once he gains a bit more weight, he will also be able to have his NG tube removed.
As the milestones in treatment hit, we know we have made it one step futher to completing Nevan's 2 years. We are trying to get through life right now by hopping from one good moment to the next. Using memories from the past and anticipation of the future to get us through the rough times. While these times are much easier than a few short weeks ago, there are still times when we look at each other and wonder how we ever got here. Like when Nevan has an emotional breakdown because he isn't served the style of chicken he was craving and then lets us know that "he hasn't been feeling like himself lately".
When I was in my early twenties, I drove to from Cambridge to London everyday for work... sometimes as early as 4:30am. In university, I would go out multiple times a week and come home very early in the morning only to cram for an exam that I had later that afternoon. When the kids were born, I never did the 'sleep when they sleep' thing. I would be wide awake and functioning just fine on 2 hours sleep day after day. When I look back at all of these things, I wonder how in the world I ever did that... put in any of those situations now, I am not sure I would be as successful. I think 3 years from now, Craig and I will look back at this time in our lives and think the same thing. How did we possibly do that and come out on the other side!? People have commented on how strong we have remained throughout these past weeks... we always look at each other and wonder what else there is? What is the alternative? How else would we deal with this situation? We wonder what people expect to see when they meet us. And then we walk past the hallway to the Pedatric Intensive Care Unit and we watch all the parents camping out in the waiting areas, laughing with each other to ease the tension and living on cafe food for weeks at a time. We talk about what they must be dealing with, how strong they must be and how we aren't sure we would be able to cope the same... we get it. But we would cope, and so would anyone else in their or our situation. Because not to be strong is to give up... and that isn't even a choice.
There is a saying that graces many of the cancer awareness posters out there: "We don't know how strong we are, until being strong is the only choice we have".... so true.
Cute Story of the Day:
Craig was watching the kids while I was doing a bit of cleaning and sorting around the house. Nevan came over to see let me know that lunch would be ready soon.
Nevan "Mommy! Daddy's cooking, come sit down soon"
Me: "What is he making?"
Nevan: "Mac and Cheese"
Me: "Oh, is he making you Kraft Dinner?"
Nevan: Laughing at me..."Mommy its the middle of the day! He is making Kraft Lunch!"
Me "Silly me! ok then, lets go have Kraft Lunch!"
Needless to say Kraft Dinner is not a common meal in our house! lol
Monday, September 17, 2012
Friday, September 7, 2012
The Magic of Home
Nevan has become a totally different child from what we have come to know these past 8 weeks! He has turned back into the Nevan we all know and love! Smiles and laughs all day long... no more long naps just to pass the day. Video games, books, activities, full meals and even a little play time outside! Nylah still pesters him incessantly, but now he pesters her right back... mostly with the old "I'm not touching you!" with his finger an inch from face! It is the Magic of home. :)
A good contribution to this amazing change in behaviour is the fact they have stopped his Chemo for 2 weeks to give his body a break. Next week we get right back to it. We recieved our calendars for the next few months. I always understood that once we finished the intense induction phase, we would go onto a cycle of once a week clinic visits and chemo once every 3 weeks... not so. Next week Nevan will be sedated twice a week for 2 weeks, for his CNS Therapy and then he will go into clinic every Thurs and Friday for Chemo until December... or at least that is the last calendar month we recieved.
This past Thursday we went to clinic and recieved the results for Nevan's 'Minimal Residual Test' Results.... they were inconclusive. I was more than a little upset and angry at this result. It seems that more often then not, the Drs are coming to us to let us know that Nevan is in that small percentile that has shown inconclusive results. These were the test results to let us know exactly how 'in remission' Nevan is. If the number was higher than a certain threshold they would upgrade him to high risk and start treating him differently...now he stays as standard risk as some sort of default. It's not like I want Nevan to be a high risk patient or to have harsher treatments... I don't AT ALL! However, I would like to know that we are not giving him these treatments because he doesn't need them and not because they 'just don't know'. There is a small chance that Nevan does fall into the High Risk category, but because the test was inconclusive and they are now unsure how to treat, he isn't actually getting the treatment he needs.... this is making me very stressed, angry and anxious. It isn't anyone's fault and the Dr has assured me it is way too early to get upset, but it is what it is... I am furious! They will monitor him closely and he will continue to get bone marrow biopsies throughout his treatment, only time will tell if the path they have chosen will be the right one.
At last counts, Nevan's HB was at a good level and his platelettes shot up from 84 to 347!! His bone marrow is definitely doing it's job! His Neutrophils are still quite low and we are hoping they pick up soon so that he can start to socialize a bit more than he is now. He is looking forward to the fundrasing party on the 29th and asks about it everyday. We would also like to take him into school once or twice before January.
The staff at Nevan's school are being amazingly supportive in helping us through this next semester. We are taking it a semester at a time, but Nevan definitely will not be attending school until Jan. His teacher Mrs Simioni will be coming to visit Nevan often to make sure they stay in touch and the principal and other home support will come see Nevan whenever possible to help him along in his SK year so that he can move onto Grade 1 with his friends. A Nurse from McMaster Children's hospital will be coming to visit the SK class at Saginaw Public to help Mrs Simioni tell all the kids why Nevan is not in school and why, when they do see him, will he look so different from them. They are also preparing a letter to send home to parents so that everyone will be aware of the situation. We love the people at Saginaw Public School and are so happy that Nevan is enrolled there. A school and their staff really do help to raise our children and we trust the people at Saginaw whole heartedly to help us give Nevan and Nylah the best upbringing possible!
Cute Story of the Day:
It was close to Midnight and Nevan was upset because the nurse had to put tape on his nose to help hold his NG tube in place.
Nevan: "Mommy, I don't like this hospital!!!"
Me: "why?"
Nevan: "because I want to go to daddy's back Dr" (Nevan used to accompany Daddy to his chiropractor all the time)
Me: "Oh Nevan, she doesn't know how to fix this"
Nevan: starts crying..."I want Dr Laura to make me feel better!!"
Me: "Dr Laura doesnt know about blood bugs but she does know all about backs! If your back starts hurting we'll take you over ok?!"
Nevan: stops crying.... "Ok, that's a good idea"
A good contribution to this amazing change in behaviour is the fact they have stopped his Chemo for 2 weeks to give his body a break. Next week we get right back to it. We recieved our calendars for the next few months. I always understood that once we finished the intense induction phase, we would go onto a cycle of once a week clinic visits and chemo once every 3 weeks... not so. Next week Nevan will be sedated twice a week for 2 weeks, for his CNS Therapy and then he will go into clinic every Thurs and Friday for Chemo until December... or at least that is the last calendar month we recieved.
This past Thursday we went to clinic and recieved the results for Nevan's 'Minimal Residual Test' Results.... they were inconclusive. I was more than a little upset and angry at this result. It seems that more often then not, the Drs are coming to us to let us know that Nevan is in that small percentile that has shown inconclusive results. These were the test results to let us know exactly how 'in remission' Nevan is. If the number was higher than a certain threshold they would upgrade him to high risk and start treating him differently...now he stays as standard risk as some sort of default. It's not like I want Nevan to be a high risk patient or to have harsher treatments... I don't AT ALL! However, I would like to know that we are not giving him these treatments because he doesn't need them and not because they 'just don't know'. There is a small chance that Nevan does fall into the High Risk category, but because the test was inconclusive and they are now unsure how to treat, he isn't actually getting the treatment he needs.... this is making me very stressed, angry and anxious. It isn't anyone's fault and the Dr has assured me it is way too early to get upset, but it is what it is... I am furious! They will monitor him closely and he will continue to get bone marrow biopsies throughout his treatment, only time will tell if the path they have chosen will be the right one.
At last counts, Nevan's HB was at a good level and his platelettes shot up from 84 to 347!! His bone marrow is definitely doing it's job! His Neutrophils are still quite low and we are hoping they pick up soon so that he can start to socialize a bit more than he is now. He is looking forward to the fundrasing party on the 29th and asks about it everyday. We would also like to take him into school once or twice before January.
The staff at Nevan's school are being amazingly supportive in helping us through this next semester. We are taking it a semester at a time, but Nevan definitely will not be attending school until Jan. His teacher Mrs Simioni will be coming to visit Nevan often to make sure they stay in touch and the principal and other home support will come see Nevan whenever possible to help him along in his SK year so that he can move onto Grade 1 with his friends. A Nurse from McMaster Children's hospital will be coming to visit the SK class at Saginaw Public to help Mrs Simioni tell all the kids why Nevan is not in school and why, when they do see him, will he look so different from them. They are also preparing a letter to send home to parents so that everyone will be aware of the situation. We love the people at Saginaw Public School and are so happy that Nevan is enrolled there. A school and their staff really do help to raise our children and we trust the people at Saginaw whole heartedly to help us give Nevan and Nylah the best upbringing possible!
Cute Story of the Day:
It was close to Midnight and Nevan was upset because the nurse had to put tape on his nose to help hold his NG tube in place.
Nevan: "Mommy, I don't like this hospital!!!"
Me: "why?"
Nevan: "because I want to go to daddy's back Dr" (Nevan used to accompany Daddy to his chiropractor all the time)
Me: "Oh Nevan, she doesn't know how to fix this"
Nevan: starts crying..."I want Dr Laura to make me feel better!!"
Me: "Dr Laura doesnt know about blood bugs but she does know all about backs! If your back starts hurting we'll take you over ok?!"
Nevan: stops crying.... "Ok, that's a good idea"
FUNDRAISING GALA: Oct 26th, 2012
FAMILY FUNDRAISER: Sept 29th
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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 |
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.......
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