Wednesday, February 29, 2012
Delayed....
We just got back from getting the results of Noah's blood work, and it looks like his counts are too low to have treatment, so we get to stay home for another week! I have to say I am relieved. He really isn't feeling well so it would be great to get him feeling better before he gets more nasty chemo. Hopefully he will also be over this cold that he picked up so that we can even stay at RMH. I might even be able to find some time this week to put up some photos I promised.... stay tuned.....
Tuesday, February 28, 2012
it's been a long time...
Sorry for the long break again, not sure why I haven't written; we haven't been especially busy and we could have actually used your prayers....
We have been home since the 19th of February, and we were greeted at the airport by a coughing Alyson. Awesome.
There were a lot of things going on last weekend: Emily's basketball team had zones (they came in 3rd, which was great) Miranda went to Fraser Lake for a Girl's Hockey Jamboree which was a lot of fun (or so I hear) and Alyson was supposed to go to Rough Acres Bible Camp for a GEMS (our church's girl's club) rally. She was coughing like crazy, so she really should have stayed home, but I had to make a choice: she could go and cough all over everyone at the rally, or she could stay home and cough all over Noah. I chose to send her away. I did send her with a lot of cough medicine and Halls, etc, so hopefully she didn't infect too many people. When I was at Safeway buying those things, I ended up in line behind a doctor who goes to our church. I told him of my dilemma, and he told me, "That is a smart mother's decision." Phew! I was happy he agreed, although I did feel a bit (a lot) guilty, lol! Turns out it didn't make much of a difference. He still got the cold. He is now coughing and has a runny nose. Rats.
At least he isn't still so sad and grumpy from the Dexamethasone he was taking last week. It was pretty brutal, but the worst part was that he was in quite a lot of pain. On Thursday night he woke up twice in the night for Morphine so he could sleep, and the dosage didn't cover the pain in his hips, knees and shoulders so on the advice of his doctor I upped his meds to 10 mg of Morphine every 4 hrs, which is a lot, I think. It mostly helped, at least he could sleep! He looked so pale, weak and tired that I was sure he was in need of a transfusion, but his counts ended up being fine when I brought him for bloodwork. He was relieved; he would much rather have transfusions in Vancouver if it can be helped. The nurse thought he probably looked so pale because of the pain he was in. I was very happy to be finished the Dex on Friday. It's nasty.
On Saturday night, we had friends over for dinner and to play cards; it was so much fun! Part way through the evening, however, Noah complained that he thought he had a fever, so we took his temperature and yes indeed, he was at 38.5. Tom and I debated what to do. If we brought him in, they would put him on antibiotics, which we thought wouldn't be appropriate, because it is most likely viral, so (shhh!... don't tell anyone...) we didn't bring him in. We just thought that since it is likely viral, antibiotics wouldn't help anyway and he would end up with c. Diff again, which we all agreed wouldn't be worth it. I do think it was the right decision - so far. He had a fever for that night, but when he woke up, he was down to 37.3, which is still high for him, but not technically a fever. We also decided that if he spiked again, we would bring him in, but so far he hasn't. He just has a cold and feels terrible. Poor guy. He also has a bit of pain in his leg and his hands are kinda shaky. His math homework this morning is pretty messy! I feel bad for him, and I hope he gets over it quickly. Please pray for healing for him.
Miranda had a fever yesterday too, so she stayed home yesterday and today, though she is feeling much better today. It seems to have hit Noah harder than Miranda, but she is coughing too.... I have been taking my vitamins and Cold FX so that I don't get it! Noah has to go in for bloodwork tomorrow to see if we are to go back to Vancouver on Thursday. As it stands right now, he can't go to RMH, so I am kinda hoping he will be delayed... partly because I don't feel like staying somewhere else and moving, etc, but mostly because it would be nice if he was feeling 100% before they slam him with more chemo.
It has been a pretty poor break in terms of homework; usually when we are home, Noah is feeling well, so he gets a lot of work done where there aren't as many distractions. He has been feeling so bad these last weeks, the only thing I can motivate him to do is read. I make him do math too, but he does that under much protest and with me sitting right beside him, prompting him and sometimes even writing the answers for him. He has almost finished reading his Socials text book and is going to start working on his Science text next.
I have had a few people ask me about the ad - here is a photo of Noah's hot Valentine's date with the Sedins (and 6 other kids)
We have been home since the 19th of February, and we were greeted at the airport by a coughing Alyson. Awesome.
There were a lot of things going on last weekend: Emily's basketball team had zones (they came in 3rd, which was great) Miranda went to Fraser Lake for a Girl's Hockey Jamboree which was a lot of fun (or so I hear) and Alyson was supposed to go to Rough Acres Bible Camp for a GEMS (our church's girl's club) rally. She was coughing like crazy, so she really should have stayed home, but I had to make a choice: she could go and cough all over everyone at the rally, or she could stay home and cough all over Noah. I chose to send her away. I did send her with a lot of cough medicine and Halls, etc, so hopefully she didn't infect too many people. When I was at Safeway buying those things, I ended up in line behind a doctor who goes to our church. I told him of my dilemma, and he told me, "That is a smart mother's decision." Phew! I was happy he agreed, although I did feel a bit (a lot) guilty, lol! Turns out it didn't make much of a difference. He still got the cold. He is now coughing and has a runny nose. Rats.
At least he isn't still so sad and grumpy from the Dexamethasone he was taking last week. It was pretty brutal, but the worst part was that he was in quite a lot of pain. On Thursday night he woke up twice in the night for Morphine so he could sleep, and the dosage didn't cover the pain in his hips, knees and shoulders so on the advice of his doctor I upped his meds to 10 mg of Morphine every 4 hrs, which is a lot, I think. It mostly helped, at least he could sleep! He looked so pale, weak and tired that I was sure he was in need of a transfusion, but his counts ended up being fine when I brought him for bloodwork. He was relieved; he would much rather have transfusions in Vancouver if it can be helped. The nurse thought he probably looked so pale because of the pain he was in. I was very happy to be finished the Dex on Friday. It's nasty.
On Saturday night, we had friends over for dinner and to play cards; it was so much fun! Part way through the evening, however, Noah complained that he thought he had a fever, so we took his temperature and yes indeed, he was at 38.5. Tom and I debated what to do. If we brought him in, they would put him on antibiotics, which we thought wouldn't be appropriate, because it is most likely viral, so (shhh!... don't tell anyone...) we didn't bring him in. We just thought that since it is likely viral, antibiotics wouldn't help anyway and he would end up with c. Diff again, which we all agreed wouldn't be worth it. I do think it was the right decision - so far. He had a fever for that night, but when he woke up, he was down to 37.3, which is still high for him, but not technically a fever. We also decided that if he spiked again, we would bring him in, but so far he hasn't. He just has a cold and feels terrible. Poor guy. He also has a bit of pain in his leg and his hands are kinda shaky. His math homework this morning is pretty messy! I feel bad for him, and I hope he gets over it quickly. Please pray for healing for him.
Miranda had a fever yesterday too, so she stayed home yesterday and today, though she is feeling much better today. It seems to have hit Noah harder than Miranda, but she is coughing too.... I have been taking my vitamins and Cold FX so that I don't get it! Noah has to go in for bloodwork tomorrow to see if we are to go back to Vancouver on Thursday. As it stands right now, he can't go to RMH, so I am kinda hoping he will be delayed... partly because I don't feel like staying somewhere else and moving, etc, but mostly because it would be nice if he was feeling 100% before they slam him with more chemo.
It has been a pretty poor break in terms of homework; usually when we are home, Noah is feeling well, so he gets a lot of work done where there aren't as many distractions. He has been feeling so bad these last weeks, the only thing I can motivate him to do is read. I make him do math too, but he does that under much protest and with me sitting right beside him, prompting him and sometimes even writing the answers for him. He has almost finished reading his Socials text book and is going to start working on his Science text next.
I have had a few people ask me about the ad - here is a photo of Noah's hot Valentine's date with the Sedins (and 6 other kids)
He ended up right between them! He was so cute. They mostly just had to sit and smile while Daniel and Henrik said things like, "So show the heart of a Canuck!" or "Remember what's important first!" (they told us that would make sense in the context of the segment) One time all the kids had to say something together like, "We're all part of the same family - a big happy one!" They filmed for about 45 minutes. The Sedins were pretty great; at one point Daniel Sedin (on the right) turned to Noah and asked, "That was pretty good, eh?" and Henrik asked, "Did I do better than Dan?" Then when it was all over, we had some time to take photos and they had cards to sign for the kids. Well, at least Henrik had cards - instead of taking a stack of #22 cards, his publicist had picked up a stack of #21 cards! So Daniel Sedin handed out Mason Raymond cards, lol! It was pretty funny. Noah actually got one of Henrik's cards with both of their autographs on it, which is rare, so that was cool. The segment will be aired during the Canucks for Kids telethon which is March 8th. I think I will be able to find the clip online for those of you who don't live in BC or don 't want to watch the whole thing. I will post it when it is online.
They did remember Noah from the scarf thing - when he went to sit by them, one said, "Ohhh nooo!" it was funny, and thankfully not too embarrassing for Noah; he was really worried they would make a big deal and say he couldn't be in the ad, etc. All in all it was just a good time. Tom said, "It is getting harder and harder to hate those guys..." (The Canucks) lol.
This is Daniel Sedin.
And this is Henrik.
Well my two sickos are finally feeling hungry and they are pestering me to make lunch so I should probably do that. Oh, that reminds me - Noah has gained over 15 lbs these last three weeks! He weighed himself and he was 80.2 lbs or 36.5 kg! When we arrived in Vancouver at the beginning of Feb., he was 31.0 kg. He has been eating non-stop, so I'm not surprised. His face is all puffy again, which he feels quite self-conscious about, but it won't last too long. I hope that extra weight helps him weather the nasty stuff coming up. He discovered yesterday that his hair is falling out again too. He thinks it is pretty funny to pull out these big clumps... he just laughs.... what a goof. At least he is laughing and not crying, right?
I can't wait until all this is over.
Monday, February 13, 2012
this week was ok....
...surprisingly. Noah was on Dexamethasone, so he was pretty emotional. There were a few times where he would leave the room and when I found him upstairs he was crying. I asked him what was wrong and he just cried and said, " I don't knoooowwww!" : (
That was hard.
One of the the redeeming things that happened was that he is eating. A lot. Yesterday he even ate french fries. That is seriously a big deal. He has never eaten an entire order of french fries in his life. He hates french fries. But when you're hungry, you'll almost try anything, right? I was impressed. He has gained 2.5 kg, or about 5 lbs this week, so that is very good. He even got up at midnight the other day and made himself a sandwich! This is behavior I have never seen from him - it is so weird..... Everything is about food. We are planning to go to the Star Wars movie this afternoon and the first thing he asked was, "Can we get popcorn there? A big bag?" lol....
The other big thing is that a friend was very generous. There is another family (the Mohans) at RMH with a son close to Noah's age and they have become good friends. They decided to buy their son a RC car and thought it would be even more fun if they bought one for Noah too. It is the coolest thing ever - it can go 35 MPH and do donuts and climb over roots and curbs and take jumps, etc. It has been so much fun! He was a bit worried that he would break it, but even when he did, it was ok. Apparently these things are made to be rebuilt and customized and broken and fixed, so the parts are quite easy to find. Thank you to my Uncle Ken who fixed it. It has definitely made Noah's week. Everyday he looks forward to driving it. The first thing he does every morning is take it out and look at it. He is so cute.
We had a wonderful visit with my good friend Elaine yesterday. It is so nice to get visitors from home... sigh. Especially when they bring Valentine's day gifts from my husband. : ) I got a beautiful ring. Then I got called a chump for opening it before Valentine's day, lol! Thanks anyway honey, it was worth it!
So, it looks like Noah might make it onto the jumbotron again - the BC Children's Hospital Foundation just called and asked if Noah wants to be in a Public Service Announcement with Daniel and Henrik Sedin for Canucks for Kids. They are going to shoot it tomorrow night here at the hospital. Cool, eh? I will let you all know when it is up on the website. I suppose it might even be on TV. He is so funny- he doesn't want to jeopardize his reputation as a staunch Oiler fan, but he can't very well wear his Oiler hat on a Canucks for Kids ad, so he would like me to remind everyone that it is Canucks for Kids, NOT Kids for Canucks, and while he is very happy about how amazingly generous the Canucks have been, they are not his favourite team. We were joking with a friend who is also an Oiler fan this afternoon about this, and Stephan had a good idea: it could be a fundraising gimmick - how much will it take for Noah to take his Oiler hat off? If people donated a certain amount of money would he be willing to wear the Canucks hat? He says he cannot be bought. But wouldn't that be fun?
Another good thing is that the Dexamethasone, while making him sad, did a good thing - it made his counts go up significantly! Normally, when he goes for blood work, they are looking for his white cell count and his neutrophils (the infection fighting cells) to be at 0.75 or higher. Well, he started with pretty high counts (3.2 or something) because we had been home for 16 days with no chemo, but on Friday I was totally taken aback when the Dr. handed me his counts - his WBC was 13.2 and it is mostly neutrophils, they were 12.4 or something crazy like that! He has taken to calling himself Immuno-Man! He has more immunity than any normal human. Funny. The counts will go down as the Doxorubicin he gets on Fridays starts to win out over the Dex. But it has been good; we went skating on Saturday with my Uncle and some friends and when Noah was thirsty, I pointed him to the water fountain, which is usually off limits for him and said, You're Immuno-Man, aren't you? You can get a drink there! It was great!
Well, it is time to go - he is all finished his chemo for the day, and we are going to the movie! I hope you are all well, and thanks for yours prayers and support... it makes a big difference - God is so good, he has been carrying us through this week and showed us His love through the kindness and generosity of friends.
That was hard.
One of the the redeeming things that happened was that he is eating. A lot. Yesterday he even ate french fries. That is seriously a big deal. He has never eaten an entire order of french fries in his life. He hates french fries. But when you're hungry, you'll almost try anything, right? I was impressed. He has gained 2.5 kg, or about 5 lbs this week, so that is very good. He even got up at midnight the other day and made himself a sandwich! This is behavior I have never seen from him - it is so weird..... Everything is about food. We are planning to go to the Star Wars movie this afternoon and the first thing he asked was, "Can we get popcorn there? A big bag?" lol....
The other big thing is that a friend was very generous. There is another family (the Mohans) at RMH with a son close to Noah's age and they have become good friends. They decided to buy their son a RC car and thought it would be even more fun if they bought one for Noah too. It is the coolest thing ever - it can go 35 MPH and do donuts and climb over roots and curbs and take jumps, etc. It has been so much fun! He was a bit worried that he would break it, but even when he did, it was ok. Apparently these things are made to be rebuilt and customized and broken and fixed, so the parts are quite easy to find. Thank you to my Uncle Ken who fixed it. It has definitely made Noah's week. Everyday he looks forward to driving it. The first thing he does every morning is take it out and look at it. He is so cute.
We had a wonderful visit with my good friend Elaine yesterday. It is so nice to get visitors from home... sigh. Especially when they bring Valentine's day gifts from my husband. : ) I got a beautiful ring. Then I got called a chump for opening it before Valentine's day, lol! Thanks anyway honey, it was worth it!
So, it looks like Noah might make it onto the jumbotron again - the BC Children's Hospital Foundation just called and asked if Noah wants to be in a Public Service Announcement with Daniel and Henrik Sedin for Canucks for Kids. They are going to shoot it tomorrow night here at the hospital. Cool, eh? I will let you all know when it is up on the website. I suppose it might even be on TV. He is so funny- he doesn't want to jeopardize his reputation as a staunch Oiler fan, but he can't very well wear his Oiler hat on a Canucks for Kids ad, so he would like me to remind everyone that it is Canucks for Kids, NOT Kids for Canucks, and while he is very happy about how amazingly generous the Canucks have been, they are not his favourite team. We were joking with a friend who is also an Oiler fan this afternoon about this, and Stephan had a good idea: it could be a fundraising gimmick - how much will it take for Noah to take his Oiler hat off? If people donated a certain amount of money would he be willing to wear the Canucks hat? He says he cannot be bought. But wouldn't that be fun?
Another good thing is that the Dexamethasone, while making him sad, did a good thing - it made his counts go up significantly! Normally, when he goes for blood work, they are looking for his white cell count and his neutrophils (the infection fighting cells) to be at 0.75 or higher. Well, he started with pretty high counts (3.2 or something) because we had been home for 16 days with no chemo, but on Friday I was totally taken aback when the Dr. handed me his counts - his WBC was 13.2 and it is mostly neutrophils, they were 12.4 or something crazy like that! He has taken to calling himself Immuno-Man! He has more immunity than any normal human. Funny. The counts will go down as the Doxorubicin he gets on Fridays starts to win out over the Dex. But it has been good; we went skating on Saturday with my Uncle and some friends and when Noah was thirsty, I pointed him to the water fountain, which is usually off limits for him and said, You're Immuno-Man, aren't you? You can get a drink there! It was great!
Well, it is time to go - he is all finished his chemo for the day, and we are going to the movie! I hope you are all well, and thanks for yours prayers and support... it makes a big difference - God is so good, he has been carrying us through this week and showed us His love through the kindness and generosity of friends.
Thursday, February 2, 2012
Off to Vancouver tomorrow
yep, we are going back to Vancouver in the morning. Yesterday Noah went for bloodwork and his counts (not surprisingly) were very good. I was a bit worried about his hemoglobin, because he looks quite pale, but it was 120, which is just fine, so that was a relief.
Anyway, I haven't quite finished packing, so I should probably do that.... please pray that the Doxorubicin he gets tomorrow won't make him puke tooooo much.... he hates that. ; )
Anyway, I haven't quite finished packing, so I should probably do that.... please pray that the Doxorubicin he gets tomorrow won't make him puke tooooo much.... he hates that. ; )
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