Hi everyone, yes, we are still here. We had hoped to go home on Tuesday as has been our pattern, but on Monday Noah started having stomach and chest pain that we finally figured out had partly to do with gastric reflux. He was in quite a bit of pain, and it was worse when he stood up. That was really awesome, because he couldn't be given Tylenol for the pain and he had to stand up to go to the bathroom at least every two hours. I made it worse by making him drink a LOT :-s
They did do a urine culture, because he was having pain in his belly as well. Anyway, he was very unhappy and very weepy, which was very weird. He was even moaning with pain during his sleep! It all made sense when they took his temperature and he was 38.4 degrees. Aha! He had a fever!
I hate having a fever. You know how your back hurts and your skin hurts, etc? No wonder he was so unhappy! So they did a blood culture and gave him some tylenol. (He can't be given Tylenol because it masks a fever. If I were to give him tylenol because he had a headache, for instance, and it was all because he had some infection, no one would know and with his immune system being compromised, he could get really sick. If they know he has a fever, they give him tylenol AND antibiotics.)
Dr. Svetlana decided that since he had a fever and he was in pain it would be best to wait until the cultures came back to make sure he wasn't "growing anything". He was given 3 doses of the antibiotic and it seems that it helped quite a bit; his fever is down since Monday and he no longer has any pain. So we have been cleared to go, right after Noah gets a blood transfusion. His hemoglobin is a bit low and she thought he might need a top-up before we go home, which was very nice, I thought.
Our flight is tonight, and we will hopefully be home for a few days.
We may get to go to CampGoodTimes Family camp this summer. I waited to apply because I didn't know which week to apply for, since we never know when his treatments are going to begin. Turns out I should have just applied and then we could figure it all out afterward. Apparently that is what they do. Oh well. So now we are on a waiting list and if someone cancels, we are in! I have heard it is super awesome, and the food is great and the activites are fun, etc. Our kids are excited to go. The only Problem is that it starts on Monday. So we will get home on Wednesday night and hop in the van on Sunday and come right back. At this point, I am not sure I want to do that. I kinda want to be home for a while - at least a week, lol!
The kids get to go to the Kids Camp regardless, so it won't be the end of the world if we don't end up at Family Camp. We can always go next year.
I must say I am addicted to my laptop. This month without it has been quite difficult. I am very thankful that at least I have an iphone and there is a lot of free wi-fi out there. However, I did finally feel free to be able to read without feeling guilty. I have a terrible reading disease - if get a book in my hands nothing else happens until I am finished reading it. My children will not be fed, the laundry will not be washed, nor will the dishes. They do not exist whilst I am holding a book. But here in the hospital, I am not responsible for anything! Sure, I have to look up once in while when the nurse comes in with some medications to make sure the labels are right, etc, or to say, "Noah, take a bite/drink!" But it is quite glorious, all this time to just read and read and read, while Noah watches Family Channel or Teletoon to his heart's content. We are both happy. Until I finish my book and remember that Noah still has Math to do. Which reminds me....
Wednesday, July 27, 2011
Tuesday, July 19, 2011
*disclaimer- I started to write this post on Tuesday which is why the date is Tuesday, but I finished and posted it today, Friday, July 22. *
So on Saturday night Tom was all set to go home, had the girls all packed up, sandwiches made and everything when we noticed that Noah was very sad and then he started to cry.... he was upset about Tom leaving. That was too heart-wrenching and so Tom decided that since he was the only one who wanted to go home anyway, he should stay. Everyone was very happy. (this is an understatement) But we realized on Thursday (the 21st) that if he didn't go home, he would only end up being at home for about 2 weeks all summer! So he and the girls went home this morning, since Noah is being admitted today. It is hard to be here with everyone when Noah is in the hospital. It is too bad, though, because tomorrow is our 17th anniversary, so we will have to celebrate it when Noah and I go home on Tuesday or Wednesday.
We did have a hard time trying to figure out what to do this week, though. We didn't want to squish into a small room at RMH with all six of us for a whole week, so thankfully my Uncle Ken and Aunty Helene who live in Abbotsford were able to house and feed us this week. We had to drive into Vancouver on Monday for an appointment so the Doctors could have a look at Noah's eyes and his mouth, but that was ok. In our new van it is a breeze! (We really love it! Thanks again to everyone who contributed to the fund so we could buy it....)
One thing that wasn't so great is that Tom's back was really sore after sleeping on the hospital cot and on Tuesday I think he had some spasms; he couldn't move at all! It was quite scary when it initially began, he pretty well dropped to the floor and couldn't get up. He took some Extra Strength Tylenol and Advil and after a while he could sit and stand and even move a bit. He did that for a couple of days and now it is much better. I hope the drive home goes ok and that he gets it checked out at home. (If you happen to see him at home this week, ask him if he has gone to the doctor yet. He'll love that. lol. The extra pressure might push him to actually go....)
It was very nice to catch up with my cousins whom I had never really got to know, as they are quite a bit younger than I am, and to hang out and drink wine with my Uncle and Aunt. We did some shopping, and Emily and I went to a movie with my cousin Hannah Jo and her cousins Hannah (Groot) and Ruby Ann which was really fun. Emily and Hannah are good friends and Ruby Ann is the same age as Emily and Hannah so they had a lot of fun together, including staying up until 3 am watching movies! Crazy kids...
We also had the opportunity on Tuesday to visit with some good friends, Greg and Lisa De Vries, who used to live in Smithers but who now live near Chilliwack. We enjoyed visiting with them and Greg even took Tom fishing! They joked about Tom lying on the floor of the boat fishing, but his back was ok by the afternoon so off they went. He was so happy when they came back. I am pretty sure he didn't even get a nibble, but he got to go fishing, so it didn't matter!
We are at the clinic right now; Noah is just waking up after an LP, he is still pretty groggy, but he is hungry. He will be admitted later today; after being hydrated for a minimum of 6 hrs they will start the methoTREXATE and it will all begin again. Please pray that I will remember to get him to drink enough. I have a hard time thinking of that, especially if I am reading a book or something. :-s
He is being moved right now, so I should go...
Have a good day everyone!!!
So on Saturday night Tom was all set to go home, had the girls all packed up, sandwiches made and everything when we noticed that Noah was very sad and then he started to cry.... he was upset about Tom leaving. That was too heart-wrenching and so Tom decided that since he was the only one who wanted to go home anyway, he should stay. Everyone was very happy. (this is an understatement) But we realized on Thursday (the 21st) that if he didn't go home, he would only end up being at home for about 2 weeks all summer! So he and the girls went home this morning, since Noah is being admitted today. It is hard to be here with everyone when Noah is in the hospital. It is too bad, though, because tomorrow is our 17th anniversary, so we will have to celebrate it when Noah and I go home on Tuesday or Wednesday.
We did have a hard time trying to figure out what to do this week, though. We didn't want to squish into a small room at RMH with all six of us for a whole week, so thankfully my Uncle Ken and Aunty Helene who live in Abbotsford were able to house and feed us this week. We had to drive into Vancouver on Monday for an appointment so the Doctors could have a look at Noah's eyes and his mouth, but that was ok. In our new van it is a breeze! (We really love it! Thanks again to everyone who contributed to the fund so we could buy it....)
One thing that wasn't so great is that Tom's back was really sore after sleeping on the hospital cot and on Tuesday I think he had some spasms; he couldn't move at all! It was quite scary when it initially began, he pretty well dropped to the floor and couldn't get up. He took some Extra Strength Tylenol and Advil and after a while he could sit and stand and even move a bit. He did that for a couple of days and now it is much better. I hope the drive home goes ok and that he gets it checked out at home. (If you happen to see him at home this week, ask him if he has gone to the doctor yet. He'll love that. lol. The extra pressure might push him to actually go....)
It was very nice to catch up with my cousins whom I had never really got to know, as they are quite a bit younger than I am, and to hang out and drink wine with my Uncle and Aunt. We did some shopping, and Emily and I went to a movie with my cousin Hannah Jo and her cousins Hannah (Groot) and Ruby Ann which was really fun. Emily and Hannah are good friends and Ruby Ann is the same age as Emily and Hannah so they had a lot of fun together, including staying up until 3 am watching movies! Crazy kids...
We also had the opportunity on Tuesday to visit with some good friends, Greg and Lisa De Vries, who used to live in Smithers but who now live near Chilliwack. We enjoyed visiting with them and Greg even took Tom fishing! They joked about Tom lying on the floor of the boat fishing, but his back was ok by the afternoon so off they went. He was so happy when they came back. I am pretty sure he didn't even get a nibble, but he got to go fishing, so it didn't matter!
We are at the clinic right now; Noah is just waking up after an LP, he is still pretty groggy, but he is hungry. He will be admitted later today; after being hydrated for a minimum of 6 hrs they will start the methoTREXATE and it will all begin again. Please pray that I will remember to get him to drink enough. I have a hard time thinking of that, especially if I am reading a book or something. :-s
He is being moved right now, so I should go...
Have a good day everyone!!!
Thursday, July 14, 2011
Can't go home....
Nope, Noah is not allowed to go home this round. He has a lot of sores - in his mouth, down his throat and even around his eyes! The doctor said she hasn't seen it affect eyes before, (leave it to Noah... ) but it would make sense since the sores occur on mucous membranes, and eyes have mucous membranes, too. We went to the clinic and Dr. Lucy said not to go home. At least she didn't add, "... actually, we'd like to admit you for a few days.." That may yet happen, but not today. They may want to admit him for continuous morphine if it gets too painful, and fluids if he get s dehydrated.
I am glad we stayed here in Vancouver this week, and that they could see him and give us something for him. I think the glutamine and the amount of liquid we have been pumping into him has helped him because he doesn't have quite as many sores, but I think the difference this time is more that he isn't nauseous. He was vomiting so much he became dehydrated, and it just got worse from there.
We have also had the NG tube discussion with the dietitian, Beth. She came to see us while Noah was in the hospital and she was quite frank with us, saying that she is concerned about his BMI (his height/weight ratio), which is falling -she even had it all plotted on a chart! She recommended that Noah get a tube for the next round; it is too late to do it now, because his throat is too sore, and the insertion of the tube would make it worse. His weight today is 31.3 kg, which is 68.6 lbs. (Miranda, two years younger, weighs 67, I think) I don't think it is scary-low, but it is worth being concerned about. We have realized that it might be a good idea, because as it is, he can't really eat right now and drinking is beginning to be an issue. We don't want a repeat of last round, and a tube would prevent the dehydration he experienced last time. It feels as if the Lord is nudging us in that direction, and it feels ok. I am now sorry I used it as a threat....I cringe when I think about it..
Tom's only concern is that it will make Noah's friends even more afraid of him! He has had a bit of trouble in that area, and it isn't their fault, they just don't know what to say to him and so they don't say anything! If we didn't have an XBox, I don't know what he would have done. It has been a good bridge between him and his friends. So an NG tube would just make him more freakish, in his opinion. Beth has told us that if it becomes an issue, if he is eating and drinking ok, we can take it out for the times when we are home, and then have it inserted again when we get back. We'll have to see what he thinks about the ordeal first. I can't imagine it is pleasant.
So, the current plan is that on Sunday Tom and the girls will go home and Noah and I will stay here. Noah has another appointment on Monday morning and his next round begins on the following Friday if his counts are ok. Tom is going crazy here- he can't stand all the people, and he really wants to go fishing. He bought new waders with the money he made refereeing basketball games this winter and he hasn't had a chance to try them out yet. If you know how much Tom loves fishing, you know how badly he is itching to get into the river. Our river, where there aren't any people, lol!
Well, I hear a movie and a big king-sized bed, albeit full of kids, calling my name... I should answer! Hope you all are enjoying sunshine somewhere!
I am glad we stayed here in Vancouver this week, and that they could see him and give us something for him. I think the glutamine and the amount of liquid we have been pumping into him has helped him because he doesn't have quite as many sores, but I think the difference this time is more that he isn't nauseous. He was vomiting so much he became dehydrated, and it just got worse from there.
We have also had the NG tube discussion with the dietitian, Beth. She came to see us while Noah was in the hospital and she was quite frank with us, saying that she is concerned about his BMI (his height/weight ratio), which is falling -she even had it all plotted on a chart! She recommended that Noah get a tube for the next round; it is too late to do it now, because his throat is too sore, and the insertion of the tube would make it worse. His weight today is 31.3 kg, which is 68.6 lbs. (Miranda, two years younger, weighs 67, I think) I don't think it is scary-low, but it is worth being concerned about. We have realized that it might be a good idea, because as it is, he can't really eat right now and drinking is beginning to be an issue. We don't want a repeat of last round, and a tube would prevent the dehydration he experienced last time. It feels as if the Lord is nudging us in that direction, and it feels ok. I am now sorry I used it as a threat....I cringe when I think about it..
Tom's only concern is that it will make Noah's friends even more afraid of him! He has had a bit of trouble in that area, and it isn't their fault, they just don't know what to say to him and so they don't say anything! If we didn't have an XBox, I don't know what he would have done. It has been a good bridge between him and his friends. So an NG tube would just make him more freakish, in his opinion. Beth has told us that if it becomes an issue, if he is eating and drinking ok, we can take it out for the times when we are home, and then have it inserted again when we get back. We'll have to see what he thinks about the ordeal first. I can't imagine it is pleasant.
So, the current plan is that on Sunday Tom and the girls will go home and Noah and I will stay here. Noah has another appointment on Monday morning and his next round begins on the following Friday if his counts are ok. Tom is going crazy here- he can't stand all the people, and he really wants to go fishing. He bought new waders with the money he made refereeing basketball games this winter and he hasn't had a chance to try them out yet. If you know how much Tom loves fishing, you know how badly he is itching to get into the river. Our river, where there aren't any people, lol!
Well, I hear a movie and a big king-sized bed, albeit full of kids, calling my name... I should answer! Hope you all are enjoying sunshine somewhere!
Wednesday, July 13, 2011
Sorry for not updating sooner....
But we have no laptops. We forgot them at home. Don't ask.
Anyway, it is too hard to write a blog post from my iphone so I am doing it at the house where we are staying. They have a laptop available here, so that makes me happy. AND it is running Ubuntu, instead of Windows, which appeals to the computer geek in me, so it makes me very happy....
Back to the point of this blog - Noah- who is doing just fine. They are being very cautious with him this round, since the last one went so horribly. They hydrated him for an extra 24 hrs, they are giving him 2 wks of something called Glutamine, which is supposed to prevent sores, and they gave him some extra doses of the rescue drug, Leucovorin, that they give people when they are on methoTREXATE. We also have been advised to stick around Vancouver this week so that if he ends up getting some sores and he is not able to eat or drink, he can be admitted here and given fluids and morphine, where he is more comfortable.
He was quite sad that he wasn't able to attend the gala dinner on Saturday, though. It was really fun; there was a magician and a clown who made the most unbelievable balloon creations! He made a "custom Harley Davidson" out of balloons! It has chrome handlebars, a leather seat, a kickstand, and a "killer gastank" (a balloon with skulls and crossbones on it). The best part was that it is almost 3 ft high to the handlebars and at least that long. It is so cool.
The gas tank is falling out here, but you get the idea.
He also made a huge flower with a caterpillar on it for Alyson, a huge cake with a glowing candle on the top for Emily (it can also be worn as a hat) and an adorable penguin inside a big heart for Miranda. It was so much fun. And it goes without saying that the food was amazing. (It was at the Westin Bayshore. I was making happy eating noises the whole time, lol! Thanks so much to Reid and Diane, who put on the dinner every year for families who stay at the Ronald Mc Donald House. It was spectacular!
Yesterday we met up with our good friends Jacquie Lester and her sons Garth and Nathan at the Capilano Suspension Bridge, and wandered around there for a while. It is expensive, but if you live in BC, your entrance fees pay for an annual membership, so now we can go back whenever we want to. Apparently they have a fantastic Christmas light thing going on in December, so if we are here for Christmas, we can check it out. (I don't really want to think about that, but it is a distinct possibility...)
The place we are staying is near Commercial drive, so if I can convince Tom, we might go check out the shops there today. There is a splash park nearby, so we can do that as well. It is just too bad it isn't sunny.... it is actually warmer in Smithers today than Vancouver. Enjoy it everyone!
Anyway, it is too hard to write a blog post from my iphone so I am doing it at the house where we are staying. They have a laptop available here, so that makes me happy. AND it is running Ubuntu, instead of Windows, which appeals to the computer geek in me, so it makes me very happy....
Back to the point of this blog - Noah- who is doing just fine. They are being very cautious with him this round, since the last one went so horribly. They hydrated him for an extra 24 hrs, they are giving him 2 wks of something called Glutamine, which is supposed to prevent sores, and they gave him some extra doses of the rescue drug, Leucovorin, that they give people when they are on methoTREXATE. We also have been advised to stick around Vancouver this week so that if he ends up getting some sores and he is not able to eat or drink, he can be admitted here and given fluids and morphine, where he is more comfortable.
He was quite sad that he wasn't able to attend the gala dinner on Saturday, though. It was really fun; there was a magician and a clown who made the most unbelievable balloon creations! He made a "custom Harley Davidson" out of balloons! It has chrome handlebars, a leather seat, a kickstand, and a "killer gastank" (a balloon with skulls and crossbones on it). The best part was that it is almost 3 ft high to the handlebars and at least that long. It is so cool.
The gas tank is falling out here, but you get the idea.
He also made a huge flower with a caterpillar on it for Alyson, a huge cake with a glowing candle on the top for Emily (it can also be worn as a hat) and an adorable penguin inside a big heart for Miranda. It was so much fun. And it goes without saying that the food was amazing. (It was at the Westin Bayshore. I was making happy eating noises the whole time, lol! Thanks so much to Reid and Diane, who put on the dinner every year for families who stay at the Ronald Mc Donald House. It was spectacular!
Yesterday we met up with our good friends Jacquie Lester and her sons Garth and Nathan at the Capilano Suspension Bridge, and wandered around there for a while. It is expensive, but if you live in BC, your entrance fees pay for an annual membership, so now we can go back whenever we want to. Apparently they have a fantastic Christmas light thing going on in December, so if we are here for Christmas, we can check it out. (I don't really want to think about that, but it is a distinct possibility...)
The place we are staying is near Commercial drive, so if I can convince Tom, we might go check out the shops there today. There is a splash park nearby, so we can do that as well. It is just too bad it isn't sunny.... it is actually warmer in Smithers today than Vancouver. Enjoy it everyone!
Subscribe to:
Posts (Atom)