We got some horrible news yesterday. Kade has been moved from pain management to end of life care here at CP. We were told he has days maybe weeks, most like not though. He is on a boatload of drugs and his little body is slowly giving in. His spirit and mind are not however and he is as strong willed as ever. I'm not a religious man, but if there is a God he's gonna have his hands full. God if you are listening...you and I are not on good terms right now, but you better watch out because Kade's gonna give you an earfull!
Some of you may have already gotten this information on facebook. I will have a huge hole in my slowly dying heart. How do you say goodbye to someone you love more than anyone could imagine. I've truly enjoyed every minute of his life and he has taught me so much. What's worse is that we are here watching another family go through exactly the same thing. I hate you cancer, youve stolen from me the only thing I value...one of my children.
Thursday, May 31, 2012
Tuesday, May 29, 2012
Hard Times
As usual it has been a very long time since this was updated and things change rapidly in our world. I will start from where i las left off. We went to see the lorax twice, Kade liked it a lot! After having his epidural a few issues developed. His line started leaking several times due to very fragile filters mostly. This was a huge infection risk that made his doctors very nervous. Eventually his line developed a leak in two places that wasn't as simple to fix as replacing a cracked filter. What this meant was that he needed to have an internal intrathecal pump installed. This is a really big deal. First of all the surgery and the pump are extremely expensive (the pump alone is $25,000). Next there are a limited number of neurosurgeons that will do this surgery on a child...no pediatric surgeons would. This procedure had never been done on a child with cancer in this province...ever. This meant that there was a huge amount of red tape to go through to get an approval from the medical system to have this done...and Dr. Lauder got the approval. The day that Kade's pump developed 2 leaks she decided it was time. So on her own she made all the arrangements, between getting the O.R. booked and getting the neurosurgeon and some of his staff from St.Pauls organized to dealing with the administration at BCCH. She made it all happen. At 7:00pm that night Kade went in for surgery and it was a success! We went back to CP at midnight and Dr.Lauder went home for some much needed sleep. She checked in on Kade at 6:00am the next morning and when she got to the hospital and checked her email, the approval for Kades surgery was taken away. She sent them an email saying they were to late, that the surgery had already been done and they had to suck it up. What an amazing stroke of luck that was...not to mention what an amazing person Dr. Lauder is! After Kade got stable on his new pump and we had been at CP for 2 1/2 months, we got to go home again. The whole purpose of this was to have as much quality time with Kade as possible. Kade will have his case published in a medical journal because of this intrathecal pump, as I understand it he is the youngest child to have this done and he is the first child to have this done for cancer reasons. What i hope is that this will open the door for other kids to have this done, because this has greatly improved his quality of life. I want the whole world to know how amazing Dr. Gillian Lauder is. The gift she has given our family is truly a miracle...she has given us a miracle! We got to go home for about 2 months, with occassional short stays (a couple of days here and there) at CP for pump refills and treatment/ med titration. We were able to take Kade camping in our rv in fort Langley. We thought we would maybe just stay for one night and feel things out. Well as it turns out we stayed for three nights and had a great time. We let kade do all sorts of things you'd never let a 6 year old do...start fires, carve wood with a very sharp knife, chop wood with a hatchet and throw wood on a fire at a range so close his beloved winnie blanket almost caught fire! He roasted weiners and marshmallows...all from his wheel chair. The people at the campground were very wonderful to us as well. Several of them have had their own family crisises with cancer, so they refunded us our first night and let us stay for free the rest of the time we were there. I shed a few tears when they told us that. The one thing this whole horrible experience has showed me, is how wonderful and generous people really are. The truth is that we are only surviving this because of the generosity of others. We would be homeless and starving if it wasnt for the support we have received from others...a lot of people we have never met! We also took Kade on a quest for wonka bars...which was almost impossible, but after a couple of days I found some (thanks to a friend of mine). We went to the Vancouver Aquarium on the first day of the wonka bar hunt too! Kade was squite pleased with the fish thing, but he really just wanted to see Piranhas.
Unfortunately his disease has progressed to the point where he is having an unimaginable amount of pain, and as I write this I can say that the last few days have been very difficult and there has been a lot of tears. His cancer has continued attacking his spine and is in his neck up to the base of his skull. His pain has gotten to be unbearable to the point that he begs to have the pain go away. We are back at canuck place and have been here for 6 days now. They have put him back on the IV Cadd pumps again and started him back up on ketamine, precedex, fentanyl (which was just changed to Hydromorphone). He also has fentanyl patches on as well and he is getting methadone now too. This time his doses are even higher and for the most part the drugs haven't been working. We have now reached the point that he may need to be permanently sedated to give him a break from the pain. There are limited options now. The one option we started today was more radiation treatment. This has been successful in the past for giving him pain relief. The problem is that he has to be sedated to get the treatment and he has so many drugs on the go, at such high doses, that sedation can literally kill him. This is a very real concern and once again it was Dr. Lauder to the rescue! She is the only one that would do the sedation on Kade, mostly because she knows him so well and is the most familiar with his case. We were forced to make a very difficult decision this morning and Elaine and I did not agree. It was and is very possible that Kade might not survive the sedation, and we had to decide if it was worth the risk. After all there is no guarantee that radiation would work, and in truth it can cause even more pain. I wanted to proceed with it, and Elaine did not. In the end we let Kade decide after I explained what the radiation could do for him. I did somewhat talk him into going, but please understand that all I want for him is to be out of pain...thats all any of us want for him. I know it sounds evil and that i was gambling with my babies life, but the alternative is that he is sedated until he dies! Another reality is that you can be sedated and still be in agonizing pain. My biggest fear for my little boy is that he lie sedated and in agony for months. This is a possibility as well, since as far as we can tell, his disease has only been attacking his skeletal system and his organs are still ok...as far as we know. Thats not to say I didn't have feelings of fear and guilt. I did at one point today ask Elaine if she would ever forgive me if he didn't make it through sedation...she said she wouldn't need to forgive me because it's not my fault. Kade made it through his radiation fine, and so far his pain seems to be better...knock on wood...i really don't want to jinx anything! He still has three more days of radiation to go through though. This is the worst thing i've ever had to go through and i can't think of a worse torture to put a child or their family through! All I know is that my love for Kade is all I have and I do my best to make the right decisions for him. everyday I try to come to terms with the fact that sooner rather than later I will have to say goodbye to my beautiful little son, and that right now the most important thing is his comfort and the best way to ease him through this. All of you, please hold your children close and give them all your love and as much of your time as you can. Children are a gift, and their love is the greatest thing you will ever know.
Unfortunately his disease has progressed to the point where he is having an unimaginable amount of pain, and as I write this I can say that the last few days have been very difficult and there has been a lot of tears. His cancer has continued attacking his spine and is in his neck up to the base of his skull. His pain has gotten to be unbearable to the point that he begs to have the pain go away. We are back at canuck place and have been here for 6 days now. They have put him back on the IV Cadd pumps again and started him back up on ketamine, precedex, fentanyl (which was just changed to Hydromorphone). He also has fentanyl patches on as well and he is getting methadone now too. This time his doses are even higher and for the most part the drugs haven't been working. We have now reached the point that he may need to be permanently sedated to give him a break from the pain. There are limited options now. The one option we started today was more radiation treatment. This has been successful in the past for giving him pain relief. The problem is that he has to be sedated to get the treatment and he has so many drugs on the go, at such high doses, that sedation can literally kill him. This is a very real concern and once again it was Dr. Lauder to the rescue! She is the only one that would do the sedation on Kade, mostly because she knows him so well and is the most familiar with his case. We were forced to make a very difficult decision this morning and Elaine and I did not agree. It was and is very possible that Kade might not survive the sedation, and we had to decide if it was worth the risk. After all there is no guarantee that radiation would work, and in truth it can cause even more pain. I wanted to proceed with it, and Elaine did not. In the end we let Kade decide after I explained what the radiation could do for him. I did somewhat talk him into going, but please understand that all I want for him is to be out of pain...thats all any of us want for him. I know it sounds evil and that i was gambling with my babies life, but the alternative is that he is sedated until he dies! Another reality is that you can be sedated and still be in agonizing pain. My biggest fear for my little boy is that he lie sedated and in agony for months. This is a possibility as well, since as far as we can tell, his disease has only been attacking his skeletal system and his organs are still ok...as far as we know. Thats not to say I didn't have feelings of fear and guilt. I did at one point today ask Elaine if she would ever forgive me if he didn't make it through sedation...she said she wouldn't need to forgive me because it's not my fault. Kade made it through his radiation fine, and so far his pain seems to be better...knock on wood...i really don't want to jinx anything! He still has three more days of radiation to go through though. This is the worst thing i've ever had to go through and i can't think of a worse torture to put a child or their family through! All I know is that my love for Kade is all I have and I do my best to make the right decisions for him. everyday I try to come to terms with the fact that sooner rather than later I will have to say goodbye to my beautiful little son, and that right now the most important thing is his comfort and the best way to ease him through this. All of you, please hold your children close and give them all your love and as much of your time as you can. Children are a gift, and their love is the greatest thing you will ever know.
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