Kade The Amazing!

Well I havent updated this for a long long time, and things have changed a lot. We've been back at Canuck Place for about 5 weeks again now. So much has happened that I can barely remember it all! We were home for a few weeks with several visits to BCCH and CP...but spending most of our time at home. Then Kade started having more back "pain". I put it like that because he didn't call it pain, he calls it the bugness. He would say his back was bugging him but it didn't hurt...if you asked him if it hurt he'd say "no it's the bugness!" It got progressively worse and got to the point that we couldn't be at home anymore. When we got to CP they kept increasing his drug doses and adding drugs. At one point he was getting about 14 different drugs for his pain, and most of them seemed to be doing very little. NONE of them touched the "bugness"! It was very scary and very disappointing. You'll notice that I said "was", but I'll get to that soon. The problem is that Kade's cancer is deteriorating his bones, very similar to osteoporosis. His bone mass is basically being eaten away by the disease and it was getting to the point that his vertebrae were getting tiny fractures. The pain that it was causing, was causing the docs to give Kade huge doses of drugs. The problem is that for a 55lb, 4 foot tall 6 year old...Kade is tough as steel. His little body could metabolize the drugs at an amazing rate and his tolerance is literally astounding! He completely surprised all his docs and nurses at the amount of drugs it takes to sedate him...especially since it never did truly sedate him. As an example, one of the drugs he is on is Sufentanyl (a serious opiate). The dose that Kade was on is the equivalent to 4 1/2 KILOGRAMS an HOUR of morphine...that is not an exageration by the way, that is what it calculates to!
Another drug they were using to sedate him (to change his VAD access) is called midazolam. The first time he got it, he got a 5 mg dose and it put him to sleep. The second time he got it, they gave him a 10mg dose that had to be administered by CP nurses while we were in the oncology clinic at BCCH. This was because none of the nurses there, were trained or were willing to give a child that big of a dose (CP nurses are trained and willing). That time it worked. The next time 10mg wasn't enough...he got 15mg...it didn't work. Then they gave him 20mg...and it didn't work...he woke up when they started to poke him. To put that in perspective, I'm 6'3" and 250 lbs...20mg would kill me (in a controlled medical environment I would be in a coma and on a ventilator!) Now to change his needle they use propaphol...that's the drug that killed Michael Jackson in case anyone was wondering! At least it still works, which is a blessing considering he has his needle changed every 2 weeks.
Okay, so the cause of the pain was his vertebrae deteriorating. So the next thing they tried was a procedure called vertebralplasty. In laymans terms it's called bone cementing. Basically under the ct scanner they inject contact cement (a medical version not found at the hardware store) into the fractures in the bone...kinda like crazy gluing a broken china plate back together. This strengthens the bone and makes it more resistant to breaking down. It's a very complicated procedure done by a very specialized doctor! We were told that 90% of osteo patients get instant pain relief and 80% of cancer patients get instant pain relief! Kade had 8 vertebrae that were in need of this, which they did in 2 procedures one week apart. At first we thought it had done the trick. The pain in his upper back seemed to get a lot better. He still said his back bugged him, but it was lower down. However when they did his lower back, the bugness in his upper back came back with a vengance. It hadn't worked the way we had hoped. This was very stressful and heart breaking...watching Kade writhe in agony begging us to "make it stop" was unbearable...many tears! So 2 weeks after the first vertebralplasty procedure, Kade went in for the next type of procedure...and epidural. If you don't know what this is, They have put an IV catheter directly into his spinal cord. It is similar to what women get when they are going through labour prior to giving birth. The difference is that pregnancy epidurals don't actually penetrate the spinal cord and Kades does. He has an intrathecal catheter that goes into the nerve sack in his lower spine. This means they can give him way less drug and have way more effect! The upside: his pain is virtually gone and we have our baby back! The downside: his legs are numb and he can't walk (he's basically paralysed), We won't be able to go home very often (ocassional overnighter...maybe), and there is a risk of infection to his spinal cord (insert major worry face here!)
The reality is that we've got our baby back! The drugs weren't taking care of the pain in his back, but they were making him sleep 23 hours of the day. When he was awake he was in agony, so they would give him a huge dose of drugs on top of the huge continous dose he was already getting. This would put him to sleep. In case you were wondering you can be asleep or unconcious and still be in pain. This went on for 2 1/2 weeks. After the epidural, they started to aggressively ween him off the drugs. Right before the epidural he was on ketamine, sufentanyl, precedex, and lidocaine continuous infusions (IV pumps.) Now he is on only the ketamine and sufentanyl, and by tomorrow he should be off the ketamine. The sufentanyl is the tough one. since it is such a hardcore opiate and they initially took him down off it too fast, he was suffering major withdrawl symptoms. He had the shakes, sweats, puking and general nasty feelings. It was ugly, so they put his dose back up to close to where it was initially. You really have to ween off opiates slowly. In the last month and a half Kade got more opiates than a hardcore herion addict would've gotten in an entire lifetime...again not an exageration.
Now for the bright side. His legs are numb, but he can still move them a little. He can't stop smiling and laughing because of happiness...he is very much like he was when he was 4, before he got cancer. We have been given our baby back for a while. I don't want to jinx anything but in his latest scans his cancer is still mostly skeletal and hasn't started attacking his organs yet. All that means is that we still have some time with him...maybe weeks...maybe months...I'm not ready to go there yet. We live in the now because the future is to dark to look to...except for tomorrow...we're going to take Kade to see the Lorax, with nurse in tow and smiling kid and all!

So far without a hitch!

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.

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.

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!

Visiting Angels

Don't let the title scare you! We got a visit from Kade's teacher Mrs. Sturn. Kade was asleep for most of the time, however he did wake for a while and told her about plants vs zombies and asked her where the other kids were...it was kinda cute! We had a nice visit to say the least. She brought us some donations that everyone in the community had been raising, as well as some pop up books and some lunch and snacks (that were incredibly good by the way...and the tiny oranges were cute and tasty!) She also brought a giant card for kade that had been signed by everyone at Hillcrest Elementary that they had made themselves...it was pretty special. She also brought a Nintendo DSi that was a gift from everyone at Hillcrest. It was a christmas gift I believe, but I figured what the hell why wait let him enjoy it now and I wanted Mrs. Sturn to know how much he liked it. She also brought his school picture and it's so cute and warms my heart to see his healthy smiling face (when he had all his cute little teeth!)
I really want to say thank you to everyone at Hillcrest; the students and parents, Mr. Lewis, Mrs. Sturn, Kim Baker and the PAC...everyone! I also would like to thank everyone at Don Christian Elementary as well as Brookswood Secondary, and the other parents and kids that have opened their hearts to us and been so generous. I can't think of a way to express how grateful we truly are. You are all a god send to our family and we will forever be in your debt.

Our Swollen Hearts!

I sit in Canuck Place as I write this with mixed feelings. We are slowly and painfully realizing our time with our beautiful little boy is getting shorter. We found out today that we will probably spend the rest of Kades life here, which at this point could still be months (crossing my fingers and praying). He is on the symptom management program at this point, and they are trying to get his pain under control. They've been chasing his pain with different drugs and have come a long way, however they are not there yet. The original hope was that Kade would be able to wear a drug patch that would give him a slow dose over 48 hours and keep his pain under control. Unfortunately he has passed that point and he will have to receive IV pain meds with two separate pumps for the rest of his life. That means he will need to have a nurse at all times close to him. We may be able to get a pass for a couple of days if we get some training on the pumps, but it would mean setting up nursing care in our home for the 2 days that we would be there. The reality is that that will probably not be an option. We are discovering that his disease is very aggressive and I fear his time is short. With that horrible truth said we are in the very best place we can be. We will be spending christmas here as a family...which isn't so bad really. We will be spending christmas in a 16000 square foot mansion, that is totally set up for kids, being completely catered to, getting the best medical attention there is! did i mention the food is prepped by five star chefs...so yes we are eating. At this point it is just Elaine and I that are staying with kade, but Sebastian and Kieron will be staying here more later on! Kade is starting to feel a little better. He has started eating a little again, which is good because he has lost about 11 pounds. He was vommiting and had a bad bout of diarrhea that really dehydrated him, so we ended up in childrens hospital last friday over night. Saturday afternoon we were transfered here by ambulance. We've been here ever since!
One thing I really wanted to say is a huge thank you to all the increbly generous people that have been helping us! Every day we hear of more people that are fund raising and doing everything they can to help us. We have received money, food, gas cards and more. This has been an incredibly huge help as Elaine and I haven't been to work in just over a month! The community has been amazing. The PAC at Kades school, all the students and parents and teachers...everyone has been so generous. There are other schools in the area as well that are doing unbelievable things. I cannot express in words how thankful we are to all of you. The gift you are giving us is the ability to spend our babies last moments with him...for that we will forever be in your debt! Our love and thanks to all!

So This Is Hell.

It's with a broken heavy heart I write this. A couple of weeks ago we got the news we dreaded most. We were told that Kades cancer has returned and that it is uncurable. It has attacked his skeletal system this time and he has it on his spine, shoulders, ribs and pelvis. We were told that we have months with him at best. He is under going treatment for pain management only now, with hopes of fending off the disease to give us more time with our baby. He has gotten Radiation on his spine and he is getting chemotherapy again. He has been getting horrific pain in his legs caused by the tumor on his spine. This disease is rapid and unimaginably awful...god how i wish it was me and not him! All his little life I have been worried about him, and to see it coming true is killing me. No one should have to watch their children deteriorate like this. We are broken. This may be my last post as it is hard to think and feel, let alone write. Everyone is trying to help us, but nothing can make this go away. We love you all and we appreciate your support.