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.
Sunday, December 18, 2011
Friday, December 16, 2011
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!
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!
Tuesday, December 6, 2011
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.
Sunday, October 30, 2011
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....
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....
Sunday, July 24, 2011
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!
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!
Wednesday, May 18, 2011
Been A Long ATime!
Wow life comes quickly, been busy and haven't updated this in forever. For starters we are very near the end of Kade's treatment, barring any issues that is. He goes in for chemo next Tuesday and gets 6 more days starting Tuesday and finishing on Tuesday following. After that he starts getting his final scans for his final evaluations, starting in the middle of June. The big day for us is July 4th. That is the day we go and have a meeting with Dr. Tim and find out if the treatment has worked or not.... we find out if Kade is Cancer free, or not! With luck (keeping our fingers crossed), Kade will then possibly go on a maintenance chemo that he would take at home. Then he will go in for an exam once a month for a year. After that it will be every three months for a year... then six months....then once a year until he is a teenager. This plan may change depending on what they find out in the final scans. I guess we'll find out then! Until then we wait with baited breath!
Monday, March 7, 2011
2nd Home!
Another fever, another trip to the hospital. So on Friday Kade got a platelet transfusion because his platelet count was ten. All his other counts were good though, so I thought we were in the clear. His white blood cell count was 10.5 and his neutriphil count was 9.8! Well Sunday morning he got a fever and off we went to the hospital. They did his blood work and his white blood cell count was 0.6 and his neutriphils were to low to count. They dropped to that level in less than a day and a half! He was getting GCSF injections that kind of artificially inflate his WBC counts though....but wow that's billions of cells dying literally over night... or so it seems!
This time though, he doesn't have a cold. We're not quite sure what he has. His fever is higher than it's ever been and he was nauseous and vomiting, which is very scary. He actually only threw up twice, but he's never done that before. His chemo doesn't even make him nauseous... the boy has an iron gut usually! So they have him on antibiotics and we are waiting for his blood cultures to see what kind of bug he has. If his cultures come back positive he will have to stay in the hospital for a full course of antibiotics. That will take two weeks, plus or minus a day. If his cultures come back negative, then we just have to wait for his counts to come back up. It takes at most 48 hours to culture the blood. If nothing has grown by then, it will mean that it is negative and home we go...if not, then here we stay. However on that note, little Ayzac is now fighting Pancreatitus and is being flown in from Kamloops hospital as we speak. So we will be here when they get here. What a nightmare! I long for the day when we get together out of a desire to see each other instead of medical reasons for our children!
This time though, he doesn't have a cold. We're not quite sure what he has. His fever is higher than it's ever been and he was nauseous and vomiting, which is very scary. He actually only threw up twice, but he's never done that before. His chemo doesn't even make him nauseous... the boy has an iron gut usually! So they have him on antibiotics and we are waiting for his blood cultures to see what kind of bug he has. If his cultures come back positive he will have to stay in the hospital for a full course of antibiotics. That will take two weeks, plus or minus a day. If his cultures come back negative, then we just have to wait for his counts to come back up. It takes at most 48 hours to culture the blood. If nothing has grown by then, it will mean that it is negative and home we go...if not, then here we stay. However on that note, little Ayzac is now fighting Pancreatitus and is being flown in from Kamloops hospital as we speak. So we will be here when they get here. What a nightmare! I long for the day when we get together out of a desire to see each other instead of medical reasons for our children!
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