Well it's friday and we made it home yesterday and no issues so far. One of Kades Bayshore nurses came in to Canuck Place and got training on his CADD pumps. We are going it alone during the day (sans nurses) and we have a nurse stay with us over night. Thus far it's been great!
I was actually able to get out yesterday for some much needed motorcycle therapy, since we finally had a dry sunny day! I did manage to find some ice and snow though and decided to keep it short. It's amazing how much stress you can be under and not notice until you step back and take a look at the big picture. It was very head clearing and very needed.
Kade is happy to be home too since he has his cats and family all here at the same time.
Friday, January 27, 2012
Sunday, January 22, 2012
Short and Sweet!
I'll try to keep it like the title says since I have an uncanny ability to run on and on! Today is sunday and we've had a very eventful week last week. Last tuesday we got to go home for the first time in ever 5 1/2 weeks. We left Canuck Place around 12:30pm and had to be back for treatment at the BC Cancer Agency at 9:00am sharp thursday!
In order for us to go home we had to have round the clock nurses at our home. This is provided by the program that we are on thru Canuck Place and the home nursing is provided by Bayshore Home Nursing. I may have gotten the name wrong to be honest because we essentially know them as Bayshore. We are allocated 56 hours a week for nurses. I'm also not sure how the financial part of it all works either, whether its a government program or if it's done thru charitable foundations. What I do know is that we are very grateful for it! We did however realize that we didn't really need round the clock nursing for Kade (at this point), and that the only major concern were his two CADD pumps. These two pumps are what gives him his constant pain meds (Ketamine and Fentanyl) intravenously through his VAD. The reason for the nursing is to monitor the pumps and deal with any problems to do with his IV access! The nurses usually have to have training on these types of pumps, but we found out most nurses don't (outside of Canuck Place)...this also includes the nurses at BC childrens hospital! I thought this would be a big deal but as it turns out, it's not! If an untrained nurse were to have a problem with the pumps, all they do is call CP and get a trouble shooting walk thru...and no, it doesn't get dispatched to india, it's from the nurses station at CP. Which is exactly what they would do if Elaine or i called in. So the point I'm trying to make is that we may not need round the clock nurses and that we may be able to stay home longer by not burning up all our nursing hours in three days! What I'm hoping for is that we can get CADD trained nurses over night and just look after Kade ourselves during the day. It might be more complicated than that though, and things change faster than I can speak or type, so we will just have to see! We would also have to get some VAD training if we were going to be at home with Kade sans nurses. Don't get me wrong though, I'm not saying that we could spend an hour or two getting trained and that would be the equivalent of going to nursing school and getting a degree! I'm just saying that with some basic training we could maybe stay home longer...which makes Kade happy!
With that said Kade is also very happy here in CP, as are we...but it's not home.
We enjoyed our brief (and busy for me) trip home, and we were back at 9:00am sharp at the Cancer Agency. Kade had to get more radiation on his right shoulder and upper arm, and at the last minute it was decided he would get it on his right hip as well. Just before we went home he started limping and he couldn't put any weight on his right leg. He couldn't walk!
Friday (the day after getting nuked) he's walking around with no limp and no problem...so it DOES work people! Tummy pain seems to be the most predominant problem he's having lately! These gastral intestinal issues are just unrelenting lately and it's very frustrating, especially for Kade. Just when he gets his appetite back and starts to eat, he will get pain. They are trying to manage it with his pain meds but they can cause tummy issues on their own in the way of constipation or diarhea. It's like being on a roller coaster sometimes. Overall he does feel okay for the most part and we do have more good times than bad...and we did get to go home! The best part is that we are booked to go home again this coming thursday and for a full three days. That is if there are no unforeseen problems. Last thursday he got radiation and chemo, and tomorrow he gets more Pamidronate (bone growing drugs). All of these usually make him feel like crap with the least being the chemo! I fully expect him to get a fever and be nauseous and miserable and I just hope it all passes by thursday!
Well there I go again blabbing on and on! Lastly i just wanted to say thank you all again for all the support we have been receiving! the donations are still coming and it feels like an absolute god send. Most of the people that are helping us, have never met us or would recognize us if they saw us. Yet they have opened their hearts to us. That is a very humbling feeling! I wish there was a way of repaying everyones generosity. At this point all we can say is thank you so much, from the bottom of our hearts! I would like to thank everyone individually, but i don't want to mention someone and forget another. There have just been so many, I'm getting teary eyed and a lump in my throat typing this. I will say this though, I was home briefly yesterday and a card had been dropped off for Kade from another little one. So I opened it and it read "To Kade from MF, I want to give you my birthday money! Merry Christmas!" and inside was $20. Now I'm a full grown man who is usually pretty good at keeping it together, but that made me cry! That is just one example of many. As you can tell I'm usually very long winded, but this puts me at a loss for words! To everyone, thank you for making it possible for us to be with our baby boy at the end of his life. That is a gift that can never be repaid! Gotta go find tissues again.
In order for us to go home we had to have round the clock nurses at our home. This is provided by the program that we are on thru Canuck Place and the home nursing is provided by Bayshore Home Nursing. I may have gotten the name wrong to be honest because we essentially know them as Bayshore. We are allocated 56 hours a week for nurses. I'm also not sure how the financial part of it all works either, whether its a government program or if it's done thru charitable foundations. What I do know is that we are very grateful for it! We did however realize that we didn't really need round the clock nursing for Kade (at this point), and that the only major concern were his two CADD pumps. These two pumps are what gives him his constant pain meds (Ketamine and Fentanyl) intravenously through his VAD. The reason for the nursing is to monitor the pumps and deal with any problems to do with his IV access! The nurses usually have to have training on these types of pumps, but we found out most nurses don't (outside of Canuck Place)...this also includes the nurses at BC childrens hospital! I thought this would be a big deal but as it turns out, it's not! If an untrained nurse were to have a problem with the pumps, all they do is call CP and get a trouble shooting walk thru...and no, it doesn't get dispatched to india, it's from the nurses station at CP. Which is exactly what they would do if Elaine or i called in. So the point I'm trying to make is that we may not need round the clock nurses and that we may be able to stay home longer by not burning up all our nursing hours in three days! What I'm hoping for is that we can get CADD trained nurses over night and just look after Kade ourselves during the day. It might be more complicated than that though, and things change faster than I can speak or type, so we will just have to see! We would also have to get some VAD training if we were going to be at home with Kade sans nurses. Don't get me wrong though, I'm not saying that we could spend an hour or two getting trained and that would be the equivalent of going to nursing school and getting a degree! I'm just saying that with some basic training we could maybe stay home longer...which makes Kade happy!
With that said Kade is also very happy here in CP, as are we...but it's not home.
We enjoyed our brief (and busy for me) trip home, and we were back at 9:00am sharp at the Cancer Agency. Kade had to get more radiation on his right shoulder and upper arm, and at the last minute it was decided he would get it on his right hip as well. Just before we went home he started limping and he couldn't put any weight on his right leg. He couldn't walk!
Friday (the day after getting nuked) he's walking around with no limp and no problem...so it DOES work people! Tummy pain seems to be the most predominant problem he's having lately! These gastral intestinal issues are just unrelenting lately and it's very frustrating, especially for Kade. Just when he gets his appetite back and starts to eat, he will get pain. They are trying to manage it with his pain meds but they can cause tummy issues on their own in the way of constipation or diarhea. It's like being on a roller coaster sometimes. Overall he does feel okay for the most part and we do have more good times than bad...and we did get to go home! The best part is that we are booked to go home again this coming thursday and for a full three days. That is if there are no unforeseen problems. Last thursday he got radiation and chemo, and tomorrow he gets more Pamidronate (bone growing drugs). All of these usually make him feel like crap with the least being the chemo! I fully expect him to get a fever and be nauseous and miserable and I just hope it all passes by thursday!
Well there I go again blabbing on and on! Lastly i just wanted to say thank you all again for all the support we have been receiving! the donations are still coming and it feels like an absolute god send. Most of the people that are helping us, have never met us or would recognize us if they saw us. Yet they have opened their hearts to us. That is a very humbling feeling! I wish there was a way of repaying everyones generosity. At this point all we can say is thank you so much, from the bottom of our hearts! I would like to thank everyone individually, but i don't want to mention someone and forget another. There have just been so many, I'm getting teary eyed and a lump in my throat typing this. I will say this though, I was home briefly yesterday and a card had been dropped off for Kade from another little one. So I opened it and it read "To Kade from MF, I want to give you my birthday money! Merry Christmas!" and inside was $20. Now I'm a full grown man who is usually pretty good at keeping it together, but that made me cry! That is just one example of many. As you can tell I'm usually very long winded, but this puts me at a loss for words! To everyone, thank you for making it possible for us to be with our baby boy at the end of his life. That is a gift that can never be repaid! Gotta go find tissues again.
Wednesday, January 4, 2012
The New Year
Normally I would wish everyone a happy new year, however it would be under false pretenses for me to do that this year. 2012 is going to be the worst year i can possibly imagine. I dont want to start this way though.
First I need to say thank you to all the amazing people that have been supporting us. There have been so many that it has been truly heart warming and heart wrenching all at the same time! I would really like to list everyone, however the list would be huge and I wouldn't dare want to forget anyone. I will say this though, it has far stretched past family and friends. Wonderful people that I've never met before have come to see us here at Canuck Place to give us donations! No words can express how thankful we are. Although Kade, Elaine and I are being catered to here at Canuck place, our older kids and Elaine's mom are at our house. As much as our life is on pause, the rest of the world is still moving on around us and the bills still need to be paid and the fridge still needs to be filled. Thanks to all the help we've received we are able to do that! I guess what I'm trying to say is thank you for keeping a roof over my families heads and keeping them fed!
We have now been here at Canuck Place for almost 4 weeks. So much for the original 3 day stay for symptom management! We are realizing exactly how aggressive Kades disease is. He is on 2 IV pain med pumps that run constantly, plus he gets other IV meds for nausea, stomach acid issues, bacterial infection, etc. We had a little bit of hope that we may be able to get back to plan A' and that we may be able to get him on a pain med patch and go home, but that changed yesterday. They weened him off one of his meds and things were looking really good for a few days, but then he started getted intense stomach pain. The initial thought was that he was constipated, however that was not the problem...we think. Because the cancer came back around Kade's spine it's causing issues with his nerves. That is why he was having leg pain. Since our whole nervous system stems from our spine, you may feel pain in other parts of your body when you have issues with or close to your spine. This will most likely be Kades biggest problem as things progress.
It has been very difficult watching my wonderfully strong big child, slowly deteriorate and waste away. He has always been such a big robust boy and now he is a skinny frail little thing...he looks so fragile. I'm not sure what I was expecting, but this is way harder than I thought! There is nothing wrong with his amazing mind though...his wits are still as sharp as a razor, and there is no trying to pull anything over on him!
It is not all darkness and gloom though. We spent christmas here, and it was one of the best christmases we've had...all things considered. We have gotten lots of really good new memories.
Normally they shut down here over christmas if no kids need to be here, but this year we needed to be here! One of the nicest things was that we had the whole mansion to ourselves! The worst part of that was that there were 2 families that looked like they would be here for the holidays and both of their children passed. That never gets easier.
we got to know one little girls parents as well, and their story was heart wrenching...especially since it was cancer that stole her from them as well. She was only 5...I hate this fucking disease!!
Anyway back to the positives, right?
So for three days we had this huge mansion all to ourselves, except for our staff...we had 2 nurses, a chef and a volunteer (for the kitchen). I gave a couple of tours to visitors and I had a chance to explore the whole house...it was pretty cool. Kade was having really good days then as well, he was a lot more like himself. He did have a bit of nausea and needed some gravol, which puts him right to sleep unfortunately...but for the most part he felt good.
Christmas morning we woke up around eight and Santa had come to visit! He had left presents for Kade under the tree in his room as well as downstairs by the huge fireplace ine the great room. One of the nurses had made fresh cinnamon buns (with creamcheese icing), when she started her shift around seven. So we got up to warm cinnamon buns and fresh coffee and a whole lot of MAGIC. It was a very normal type of christmas with warmth and excitement, but with way less stress! We had 30 people here for dinner, which was prepared by the chef. No stress of "okay we had our christmas morning and breakfast, now we have to clean the house up and start dinner because 30 people will be here in 4 hours"! It was more like "wow that was awesome, I think I'll drag my sorry carcass upstairs and have a shower now because dinner will be ready in a few hours!"
They cooked 2 turkeys, a ham, mashed potatoes, gravy, and a whole bunch of veggies, apple and pumpkin pies...it was awesome. We didn't have to clean up either. Plus we got to spend christmas with our family instead of on our own. It was truly wonderful and kade had a great day! Kade did get a little burned out around six and he went back up to his room to chill out and his tummy was causing him some grief. He didn't get to open any of the gifts that our family had brought him until boxing day, but it was like having christmas day all over again...It was great.
I can't say enough about how great everyone here at Canuck Place is! They are truly amazing at turning something shitty into something great! I'm not sure I want to go back to the emptiness of home anytime soon.
New Year's eve was a bit of a non event for us. We were just not interested this year...what it represents is just too unbearable! We did stay up past midnight with Kade and we had our party hats and noise makers and we had sparkling apple juice with the nurses. So it wasn't a total bah humbug event!
Sebastian and Kieron came for a couple of days starting new years day, which was nice. I miss having them around us. They were here through christmas, and then went home for a few days. Sebastian and I got to go to a canucks game last monday, thanks to someone who donated tickets to canuck place. It was Seb's first game, and it was nice to be able to go with him (the seats were great too!)
All in all we've had some good experiences while we've been here. It's all thanks to others generosity, so thank you!
I'm not sure if I mentioned this before, but we are allowed to have our pets here with us! Having the cats here has definitely helped Kade!
Subscribe to:
Posts (Atom)