Wednesday, October 17, 2012
Tuesday, October 16, 2012
Were going to Disney Land!!!!....
....in Nov 2014!
Nevan has been chosen by the Guelph Wish Fund for Children to be a wish kid! For all the bravery, strength and courage he has shown and is going to have to show for the next 2+ years, he is being rewarded with... pretty much what ever he wants! A very fitting prize in our minds, especially after this mornings trip to clinic.... but we'll get to that later!
Peter Baldasso from the Guelph Wish Fund came to visit Nevan shortly after he came home from the hospital a few weeks ago and let our family know the great news that they will be granting a wish for Nevan. As Nevan was smack dab in the middle of his steroids treatment and craving noodles like a drug addict... we gave him some time to decide what he wanted out of fear that he would just ask for a lifetime supply of noodles! lol We asked him over and over just incase his mind changed, but it never did. The answer was always "I want to go to Disney Land!" So off to Disney we go! After all his treatments are done and he has had a month or so to recover, The Guelph Wish Fund will send our family on an all expense paid trip to Disney Land for Nevan's 7th birthday in Nov 2014. This is a great choice as this is the only thing we won't be able to do on our own. Everything else we can probably handle, but currently Nevan is uninsurable and can't travel out of country. The Guelph Wish Fund will help us outsource and pay for the insurance we need to travel. By that time Nylah will also be old enough to enjoy the trip thoroughly and be able to make memories a lot better than now.
Yesterday as the 2 little ones were carrying on in the living room, chasing each other and laughing, the fun was interrupted with a blood curdling scream. I think Craig and I knew what happened before we even turned around. Nevan was holding his nose tube in his hand screaming with the biggest look of shock ever! In the midst of the craziness his Nose Tube got caught under Nylah and it pulled the tape right off his face. I ran over and pulled it the rest of the way out while Craig sat him on the couch to calm him down. It didn't take long for him to stop crying as he instantly felt better. Within seconds he was smiling again and very happy to have nothing stuck to his face. Craig and I were far more emotional about the situation than he was as this was the first time we had seen his entire face in months! What a beautiful face!
Shortly thereafter the air was filled with another blood curdling scream... this one from Nylah. She didn't come out as well however. She was playing in the kitchen, tripped and fell face first into the kitchen table! She smacked her two front teeth and upper lip on the edge of the table. She banged it good, and blood started flowing! Thankfully she is still on a bottle and that was all it took to calm her down. This morning her upper lip was still swollen and her gums quite bruised.
After an eventful evening we were looking forward to a calm trip to clinic... but that was a bit of wishful thinking. Nevan was going to get chemo in his port for the first time and also have a leg needle for the first time while awake. We have "magic cream" here which we apply to both his port site and his leg before we left, but nothing took away the scary sight of the needle coming towards his chest! More screaming. After the IV Chemo, Nevan recieved his leg needle. Now although we had the numbing cream to make his skin feel better, there is nothing we can do to numb the feeling of the medication going into his muscle... it burns... alot! and even more screaming. On the wall of the clinic there is a poster will all the kids names listed and 30 squares beside each name. Nevan was allowed to put a sticker on the poster and like only a kid can do... forgot all about the pain and was engrossed in choosing the perfect sticker for his name! We stayed for 45min to have his vitals checked and we headed home without a new nose tube! We decided to give Nevan a try at taking his meds orally since he felt so good not having the nose tube in.
We tried our best to persuade Nevan to take some pills as we were just as hesitant to get the NG tube put back in as he was, but he just wasnt ready to take that step. After an hour or so of trying, Nevan decided he wanted to put the nose tube back in. We applauded his efforts so he didnt feel like he failed and we headed back to clinic in the morning. The nurses put the nose tube into a petrified Nevan but chose to use the other side. This caused Nevan to cough and gag uncontrollably for about an hour as we waited for it to subside. Frustrated and utterly exhausted we watched Nevan give in and allow the nurses to again remove the tube and try the other side again. This time it went well and we took a worn out boy home to sleep the rest of the afternoon.
Yes, I think a trip to Disney is exactly what this family needs... we will mark the days off the calendar for 2 years... one by one until we are breathing a sigh of relief on a flight to Florida.
Cute Story of the Day:
Nevan and I are sitting on the couch watching Cars 2 for the thousandth time. I turn over to Nevan...
Me: "Nevan.... I love you like Crazy!"
Nevan stops watching his movie and takes my face in his hands. I am bracing myself for the sweetest comment a 4 year old can give...
Nevan: (with extreme sincerity) " Mommy.... I love you like Spinach..." He Kisses me and goes back to watching his movie.
hmmmm.... I think I will take it for the sweet moment it was and not focus on the fact that Nevan always pushes the spinach to the side of his plate...
Nevan has been chosen by the Guelph Wish Fund for Children to be a wish kid! For all the bravery, strength and courage he has shown and is going to have to show for the next 2+ years, he is being rewarded with... pretty much what ever he wants! A very fitting prize in our minds, especially after this mornings trip to clinic.... but we'll get to that later!
Peter Baldasso from the Guelph Wish Fund came to visit Nevan shortly after he came home from the hospital a few weeks ago and let our family know the great news that they will be granting a wish for Nevan. As Nevan was smack dab in the middle of his steroids treatment and craving noodles like a drug addict... we gave him some time to decide what he wanted out of fear that he would just ask for a lifetime supply of noodles! lol We asked him over and over just incase his mind changed, but it never did. The answer was always "I want to go to Disney Land!" So off to Disney we go! After all his treatments are done and he has had a month or so to recover, The Guelph Wish Fund will send our family on an all expense paid trip to Disney Land for Nevan's 7th birthday in Nov 2014. This is a great choice as this is the only thing we won't be able to do on our own. Everything else we can probably handle, but currently Nevan is uninsurable and can't travel out of country. The Guelph Wish Fund will help us outsource and pay for the insurance we need to travel. By that time Nylah will also be old enough to enjoy the trip thoroughly and be able to make memories a lot better than now.
Yesterday as the 2 little ones were carrying on in the living room, chasing each other and laughing, the fun was interrupted with a blood curdling scream. I think Craig and I knew what happened before we even turned around. Nevan was holding his nose tube in his hand screaming with the biggest look of shock ever! In the midst of the craziness his Nose Tube got caught under Nylah and it pulled the tape right off his face. I ran over and pulled it the rest of the way out while Craig sat him on the couch to calm him down. It didn't take long for him to stop crying as he instantly felt better. Within seconds he was smiling again and very happy to have nothing stuck to his face. Craig and I were far more emotional about the situation than he was as this was the first time we had seen his entire face in months! What a beautiful face!
Shortly thereafter the air was filled with another blood curdling scream... this one from Nylah. She didn't come out as well however. She was playing in the kitchen, tripped and fell face first into the kitchen table! She smacked her two front teeth and upper lip on the edge of the table. She banged it good, and blood started flowing! Thankfully she is still on a bottle and that was all it took to calm her down. This morning her upper lip was still swollen and her gums quite bruised.
After an eventful evening we were looking forward to a calm trip to clinic... but that was a bit of wishful thinking. Nevan was going to get chemo in his port for the first time and also have a leg needle for the first time while awake. We have "magic cream" here which we apply to both his port site and his leg before we left, but nothing took away the scary sight of the needle coming towards his chest! More screaming. After the IV Chemo, Nevan recieved his leg needle. Now although we had the numbing cream to make his skin feel better, there is nothing we can do to numb the feeling of the medication going into his muscle... it burns... alot! and even more screaming. On the wall of the clinic there is a poster will all the kids names listed and 30 squares beside each name. Nevan was allowed to put a sticker on the poster and like only a kid can do... forgot all about the pain and was engrossed in choosing the perfect sticker for his name! We stayed for 45min to have his vitals checked and we headed home without a new nose tube! We decided to give Nevan a try at taking his meds orally since he felt so good not having the nose tube in.
We tried our best to persuade Nevan to take some pills as we were just as hesitant to get the NG tube put back in as he was, but he just wasnt ready to take that step. After an hour or so of trying, Nevan decided he wanted to put the nose tube back in. We applauded his efforts so he didnt feel like he failed and we headed back to clinic in the morning. The nurses put the nose tube into a petrified Nevan but chose to use the other side. This caused Nevan to cough and gag uncontrollably for about an hour as we waited for it to subside. Frustrated and utterly exhausted we watched Nevan give in and allow the nurses to again remove the tube and try the other side again. This time it went well and we took a worn out boy home to sleep the rest of the afternoon.
Yes, I think a trip to Disney is exactly what this family needs... we will mark the days off the calendar for 2 years... one by one until we are breathing a sigh of relief on a flight to Florida.
Cute Story of the Day:
Nevan and I are sitting on the couch watching Cars 2 for the thousandth time. I turn over to Nevan...
Me: "Nevan.... I love you like Crazy!"
Nevan stops watching his movie and takes my face in his hands. I am bracing myself for the sweetest comment a 4 year old can give...
Nevan: (with extreme sincerity) " Mommy.... I love you like Spinach..." He Kisses me and goes back to watching his movie.
hmmmm.... I think I will take it for the sweet moment it was and not focus on the fact that Nevan always pushes the spinach to the side of his plate...
Wednesday, October 3, 2012
The Fun Fun Fundraiser!
4 days later and we are all still reeling from the days events at the "No One Fights Alone" Family Fundraiser held by Active Health Associates in Cambridge. After being cooped up in either the hospital or our house for the entire summer, this was the first time that we allowed Nevan to leave the house and be among the public. We were very nervous and anxious about having Nevan there as his counts had fallen to quite a low level. His Neutrophils were previously at an all time high of 5.8 and had fallen to 1.0 before his surgery. No doubt, even more were used up to help his incisions heal. If Nevan got a fever we would end up right back in the hospital for at least 48 hours full of tests and antibiotics. We talked about it and as we watched Nevan talk about "his party" non-stop, we decided it was worth the risk.
Adding to the fun of the day for Nevan was his new found ability to use his right arm! The surgery to have his port inserted went extremely well and it took no time at all for Nevan to start gaining mobility back in that arm. The skin on his poor arm has a long way to go to be completely healed, but there is no dressing on it and he doesn't seem to be bothered by it. Currently it looks like he is healing from a severe burn, but with time, it will look normal again. Now we are working on gaining weight and taking meds orally and we can also get rid of the NG tube.
The morning of the Fundraiser, Nana and Nanima came over to watch the kids while Craig and I went over to set up with Grandma, Grandpa and the rest of our family and friends. The time passed so quicky and before we knew it, people were showing up to enjoy the days events. We rushed home to get the kids and as we drove up the first excitement trigger was the Bouncy Castle, set up eye-catchingly at the edge of the parking lot. We drove up with two smiling kids and those smiles did not waver for the entire 4 hours. Nevan and Nylah rode horses, jumped in the bouncy castle, helped themselves to burgers and hotdogs, danced to the music, ate spiderman cookies and sat in a Fire Truck. They had the time of their lives! Finally they were allowed to be normal kids for the first time in months and we got to watch it happen... None of us realized how much we missed it. Our worries of Nevan catching a cold or having a reaction to the sun faded instantly as he and Nylah smiled, laughed and danced the day away.
Craig and I enjoyed the day equally as much, but for different reasons (even though I did quite enjoy the bouncy castle!). We were awed and humbled over and over again as we met up with old friends and were introduced to so many new ones. Everyone was filled with so much love and support filled words for us. We were touched to learn that so many have come to know us by reading our blog. In a situation where it is so easy to feel desparate and alone, time and time again family, friends and strangers are coming together to remind us that alone should not even be part of our vocabulary. Up until this point, Craig and I were the ones to give. We used to give to charities on a regular basis and haven't once passed up a box of girl guide cookies or chocolate covered almonds brought to our front door. The humane society has gotten many cans of kitten food and our old belongings get donated rather than sold or tossed. We help in any way we can, when ever we can and have always been happy to do so.... but to now be on the other side of it is heart wrenching. I don't think the amount of appreciation we have for this help can even be measured. Sometimes we worry that we have trouble finding the words, but then we realize that there just are no words meaningful enough.
I think we have all learned many important lessons throughout this adventure, but I think the best one is that we all realize that truly 'No One Fights Alone".
Cute Story of the Day:
I just finished reading Nevan a bedtime story and was getting ready to tuck him in when Peanut came up on the bed.
Me: "Nevan, you know how old Peanut is?"
Nevan: "How old??"
Me: "He is almost 9 years old! I had him before I even met daddy!"
Nevan: "Was he in your tummy?"
Me (giggling): " No Nevan, a mommy cat"
Nevan: "You had a mommy cat in your tummy?!?!"
Me (laughing so hard): "No, No... a Mommy Cat had Peanut in her tummy. Mommy only had you and Nylah in her tummy"
Nevan: "Oh... no cats?"
Me: "No Nevan... No cats!"
Is 4 too young for the "birds and the bees" talk? ;)
Adding to the fun of the day for Nevan was his new found ability to use his right arm! The surgery to have his port inserted went extremely well and it took no time at all for Nevan to start gaining mobility back in that arm. The skin on his poor arm has a long way to go to be completely healed, but there is no dressing on it and he doesn't seem to be bothered by it. Currently it looks like he is healing from a severe burn, but with time, it will look normal again. Now we are working on gaining weight and taking meds orally and we can also get rid of the NG tube.
The morning of the Fundraiser, Nana and Nanima came over to watch the kids while Craig and I went over to set up with Grandma, Grandpa and the rest of our family and friends. The time passed so quicky and before we knew it, people were showing up to enjoy the days events. We rushed home to get the kids and as we drove up the first excitement trigger was the Bouncy Castle, set up eye-catchingly at the edge of the parking lot. We drove up with two smiling kids and those smiles did not waver for the entire 4 hours. Nevan and Nylah rode horses, jumped in the bouncy castle, helped themselves to burgers and hotdogs, danced to the music, ate spiderman cookies and sat in a Fire Truck. They had the time of their lives! Finally they were allowed to be normal kids for the first time in months and we got to watch it happen... None of us realized how much we missed it. Our worries of Nevan catching a cold or having a reaction to the sun faded instantly as he and Nylah smiled, laughed and danced the day away.
Craig and I enjoyed the day equally as much, but for different reasons (even though I did quite enjoy the bouncy castle!). We were awed and humbled over and over again as we met up with old friends and were introduced to so many new ones. Everyone was filled with so much love and support filled words for us. We were touched to learn that so many have come to know us by reading our blog. In a situation where it is so easy to feel desparate and alone, time and time again family, friends and strangers are coming together to remind us that alone should not even be part of our vocabulary. Up until this point, Craig and I were the ones to give. We used to give to charities on a regular basis and haven't once passed up a box of girl guide cookies or chocolate covered almonds brought to our front door. The humane society has gotten many cans of kitten food and our old belongings get donated rather than sold or tossed. We help in any way we can, when ever we can and have always been happy to do so.... but to now be on the other side of it is heart wrenching. I don't think the amount of appreciation we have for this help can even be measured. Sometimes we worry that we have trouble finding the words, but then we realize that there just are no words meaningful enough.
I think we have all learned many important lessons throughout this adventure, but I think the best one is that we all realize that truly 'No One Fights Alone".
Cute Story of the Day:
I just finished reading Nevan a bedtime story and was getting ready to tuck him in when Peanut came up on the bed.
Me: "Nevan, you know how old Peanut is?"
Nevan: "How old??"
Me: "He is almost 9 years old! I had him before I even met daddy!"
Nevan: "Was he in your tummy?"
Me (giggling): " No Nevan, a mommy cat"
Nevan: "You had a mommy cat in your tummy?!?!"
Me (laughing so hard): "No, No... a Mommy Cat had Peanut in her tummy. Mommy only had you and Nylah in her tummy"
Nevan: "Oh... no cats?"
Me: "No Nevan... No cats!"
Is 4 too young for the "birds and the bees" talk? ;)
Tuesday, October 2, 2012
Thank You!
We want to express to everyone how we feel about yesterdays event, but there are really no words. The amount of love and support we felt from family, friends and strangers alike was unbelievable. While our plan was to bring Nevan for a little while and then take him home for a nap, he lasted the entire day and was excited and wired right until bedtime. A few short weeks ago, Nevan was being kept comfortable on a morphine drip in the hospital, just to get him through his days, and yesterday he rode a horse, filled his belly with ketchup slathered hot dogs and cookies, danced to the music and jumped in the bouncy castle!! Seeing him have such a good time, with a permanent smile on his face was worth more than everything else combined! On top of that, with the weather on our side and the great people that came out to help, we had a super successful event that will help our family provide Nevan and Nylah with what they need over the next 2 years
of Nevan's treatment. Thank you to all those who came out and donated their time and effort to help our family!
To Laura and the whole team at Active Health Associates... you are a group of very special people. We love you guys whole heartedly and will one day find a way to properly thank you for the amazing things you have done for us.
This will remain in our memories as one of the best days of our lives and as we enter tough times, we will look back on these memories to keep us moving forward.
Thank you for every minute, every penny, every bit of love thrown our way.
Anita, Craig, Nevan and Nylah
Additional From Craig;
To Laura and the whole team at Active Health Associates... you are a group of very special people. We love you guys whole heartedly and will one day find a way to properly thank you for the amazing things you have done for us.
This will remain in our memories as one of the best days of our lives and as we enter tough times, we will look back on these memories to keep us moving forward.
Thank you for every minute, every penny, every bit of love thrown our way.
Anita, Craig, Nevan and Nylah
Additional From Craig;
It's been 3 months since we all started this journey. And by 'we' I mean exactly that. Everyone. Anita aptly named our fundraiser "No One Fights Alone". From day one Anita and I have received offers of help from family, friends, friends of family, neighbours, co-workers, neighbours of family and friends, complete strangers and various other connections. Saturdays FUNdraiser was suggested, planned and successfully executed by a woman that started out over two years ago as my Chiropractor. In two short years she has become one of few people I trust to manage my healthcare needs and is now considered a very close friend to me and my family.
Dr Laura's talent as a chiropractor is matched by her professionalism, kindness and her selfless sense of community. She has shown all of us that we can all do something when someone is need. An equally heartfelt thanks goes out to Dr Laura's colleagues at Active Health Associates for all of their efforts this past weekend. This was truly a team effort for which nothing was spared to ensure Nevan had a great time with his family and friends. From the bouncy castle and face painting, to the amazing horse rides that even us adults thoroughly enjoyed. A further thanks to all the family members and friends who eagerly volunteered their time and resources. You did a great job from the excellent setup to the fun flow of the day to the extremely fast clean up. A final thank you goes out to everyone who showed their support. The day was packed with friends and fun proving beyond any question that truly no one fights alone.:)
Monday, September 17, 2012
moving right along...
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
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
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
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