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.

Still in the clear!

Well it's now the end of October and life has resumed some form of normality. Kade has started grade one and is enjoying school. He has now had two MRI's since he ended treatment in May, and they were both clear... so to speak. The tumor is still there, but it is dead or at least inactive. This is what we were hoping for, since surgery was not an option! The fear never goes away... especially around scan time. You feel some what like life is back to normal, but the thoughts and memories always linger. The scans just bring it all back, so it gets harder instead of easier. The relief is just as big though! The key is to remember to live life and not dwell on it... the glass is half full not half broken!
On a good note, Kade qualified for 'Make A Wish', so in September we went to Florida. We got to spend 3 days in Disney World, 2 days at Universal Studios and a day at Sea World! What a trip! Kade had a blast, but wow what a busy trip. We stayed at the 'Give Kids The World' resort, which is specifically set up for kids on wish trips. It is an amazing place...its a theme park all on its own, I recomend that everyone look it up on the internet! 'Make A Wish' is an unbelievable organization. They covered absolutely everything from cost to all the organizing. In the beginning Kade was interviewed to see what HIS wish was (some people apparently take advantage and make it about them instead of their child.) Of course we showed Kade what Disney was all about, and we had fun too! Sebastian was past the age limit allowed for siblings (he's 19), but Kieron was allowed to go. 18 is the age cut off for siblings and Kieron turned 18 2 days before we left. Florida was beautiful, but wow was it hot and muggy. One night when we were coming back at about 10:00 pm, it was 94 degrees and it started to rain...yuk! We were treated like V.I.P.'s! We were put to front of every line up and treated like royalty...it was awesome. We left with a ton of pictures and a ton of memories, and I will say this...Kade is the bravest little man I know. He not only went through cancer treatment for a year, but he went on rides I refused to go on! Anyway until next time....

ALL HAIL THE CONQUERING HERO!

So here we go, now that the dust has settled and the emotions have settled a little. I can now fill you in on the roller coaster of the last few months. When I last posted we were waiting for Kade to start his scans for his final evaluation, and for the most part all the pieces fell into place. Kade had all the scans he had originally, that way they have an accurate view of everything that has happened over the last year. DR. Tim went on holiday around the same time that Kade was having his scans so we were waiting with baited breath for results... or at least we thought we would be! I had told Suzanne (Kades nurse clinician), that we were feeling extremely anxious about finding out the results and that waiting for Tim to come back before we would find anything out was emotionally hard. This of course was no surprise to her at all, and as it turns out Tim, Suzanne, and quite a few of the other Oncologists were anxious about his results too. While Tim was on holiday, he talked to the other doctors and viewed Kades scans via the internet. He then emailed Suzanne the results and she phoned us right away! It's amazing how much these awesome people care... they are definitely not just in it for a paycheck!
There were two things that happened that didn't relieve any stress though. First, Kades PET scan was bumped because another little one was more in need... which obviously is more important. He was originally supposed to have the scan on June 29th, but then it was bumped to July 13th. This now meant that we wouldn't have our meeting with Tim until July 15th!
The second stress factor was that when we got the results from Kades scans (minus the PET scan), nothing had changed since the last time! The thing is, that the PET scan is the only scan that shows active cancer. Kades affected areas had already shrunk quite a bit, and we were told that the primary tumor would shrink and become scar tissue. In other words, the cancer would only shrink to a certain point and then it would stay the same. So without the PET scan we didn't know if the cancer was dead or alive... talk about nerve racking!

So the 13th of July finally came and Kade got his PET scan! Then FINALLY, the 15th came... Elaine and I barely slept for days before that! Elaine's mom Kathy came with us, my mom Linda came and so did my sister Lori... it was a big deal that day! we got there at about 1:00 for a 1:30 appointment, however Tim was busy and he was still waiting for the written report from the Radiologist about Kades PET scan. So finally just after 2:00 we went in to an office and got all the results. We never did see the written results from the PET scan, but Tim had a meeting with the Radiologist and it was confirmed that the Tumor IS DEAD!!!!!!!!!!!
It's some what bitter sweet though, Tim wanted to make sure we understood completely how things can work. Biology is very unpredictable at times, but he told us that more than half the kids in the Oncology program relapse. Also when the cancer comes back it is a lot harder to treat, because the cancer has proven to be resistant to the treatments already undergone. Also you can only irradiate an area once in your lifetime. The tissues in your body can withstand a certain amount of radiation and still survive and heal. Anything more than that and the tissues breakdown and die... and the tissue has memory! Thus radiation is a one shot deal. That is why surgery is usually the first option, but in Kades case surgery would kill him. So to be honest right now I'm still scared shitless, however we are going to take this victory and run with it...knock on wood!

So now what? Kade still has a few things he has to go through before life is completely back to normal. He still has a few more doses of Pentamidine to get (it's an antibiotic he has to inhale through a mask...this is to ward off a rare type of pneumonia that cancer kids can contract.) Also, he still has his VAD in (Venous Access Device). If you've been following the blog, you may remember that this was the tube they put in Kades chest that they used to give him all his chemo and to do all his bloodwork and give him all his meds! So now, Kade has to go in once a month to have his VAD flushed and Hep locked (to make sure no blood clots plug it up). We have to wait for the surgeon to have an opening fo do the surgery to remove it. This will probably be the only thing that we have to wait for... something we aren't used to since kids with cancer usually get bumped to the front of the line for everything else. This surgery however isn't considered that important to rush. We are not in a big hurry to have his VAD out anyway... just in case of any complications. The one thing Tim told us was that because of the location of Kades tumor, and the treatment he underwent, he may be prone to urinary tract infections! He told us that on the 15th, and on the 17th Kade got a fever and off to the hospital we went. Sure enough he had a blsdder infection, and he has been on antibiotics since then. The good news is that Kades blood counts are normalish now and his immune system is working again. This means we don't end up spending 3 days in the hospital every time Kade gets a fever. We do still call the hospital and have the Oncologist on call make the decision on what to do... at least we can give him fever reducers and function like a normal sick kid would.

VAD issues aside, Kade will now go in every 3 months for evaluation scans (bone scans, MRI's), just to keep an eye on things and make sure that if the cancer comes back they catch it early. This will go on for about a year (since it will usually come back in the first year), then the next year he will be scanned every 6 months or so. They may decide to change this schedule a little depending on how they feel. Kade may get scanned every 3 months for 2 years.
Kade has to remain cancer free for 5 years before they declare him cured, and the statistics say that this type of cancer (Embryonic Rhabdomyosarcoma) can come back any time until Kade is about 20 years old.

In the mean time, Kade, Elaine and I are going to camp goodtimes (summer camp for kids with or who have had cancer) next weekend. Also Make a Wish has granted Kades wish and we will be going to Disneyworld sometime in September. Life isn't quite back to normal yet. but in some ways it's a lot better!
Thank you all for the support you've shown us throughout this last year. We wouldn't have survived this without you! Love to all... and Ill periodically update this blog to let you know what's going on. So for now victory is ours...peace out!