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On His Own Words..................
Thanks for all of your help and prayers. I really appreciate it. We have food on our table and a beautiful christmas tree in our home. Our lights are beautifully done and our bills are paid. We have gas in our cars and the love from all of our family and friends. Your prayers mean so much. We are so blessed. G
There you have it. That is more than he has said since we sat up all night Thursday night talking and crying and just coming to terms with what we are probably facing.
Gary has not felt well at all over the past few days. Thanksgiving marked the first "crappy" day and he is still not feeling well. I am not sure that he even knows what is wrong. He is in loads of pain and that is consuming him. Everything else seems to be okay. No more fevers and no more infection - so it appears.
I will stay up tonight and hang the garland on the stairs. Tomorrow night a family that volunteers from the Beckstrand Corporation is coming to bring the boys some little gifts for Christmas. I have not told them yet nor have we told Nate and Jax what is happening with Gary. No time seems to be the right time. It will be soon.
School starts tomorrow. I am glad because the boys have been fighting over Webkins constantly! I am not naming names but one of my boys almost ended up in the back of a Police Car today after church. It was utterly embarrassing and I was mortified! He was not a deviant or delinquent but he was completely and totally out of control and he baracaded himself inside of the Chevron on the corner of Antonio/Oso because I would only allow him to get a 20 oz. coke instead of a 2 litre bottle! What a wicked and completely unfair Mom I am!!!
Well, off to bed because we have an early day and a long day at the doctors tomorrow.
Love to you all! Get shopping. Only 24 more days left to shop before Christmas!! Times a tickin!!
XOXO
Lisa
Sunday, November 30, 2008
Thursday, November 27, 2008
HAPPY TURKEY DAY
Gary is home and we are watching The Cooking Channel. He is actually an EATING MACHINE right now. I had a hard time fitting in his antibiotic (has to be taken an hour before or 2 hours after a meal) into his food schedule!
Lots has happened over the past 24 hours since I last posted so I will catch you up to speed.
We talked to Zach in great detail. We both read When Children Grieve before speaking to Zach and we are so thankful for that book. I know I have mentioned the book before because it deals with ALL loss (pet death, divorce, death of a relative or friend, etc...). Love this book. Anyhow, we laughed together and we cried together and we prayed together and just talked very openly and it was more than Gary and I could have hoped for. So, thank you for your prayers.
Dr. Barth came in to talk with us and he spent almost an hour talking to Gary and to me and to Zach. Nothing has really changed from the previous correspondence with the exception of our home care. We are not on Hospice as per Dr. Barth's recommendation. Gary is eating plenty and his nutritional values are better than they have ever been. His liver functions are completely normal (which is kinda scary seeing as there is cancer in there) and his cancer has shrunk (ever so slightly but it has).
We are basically putting out fires at this point in time. As long as Gary feels okay and it not being killed by his pain and has a quality of life that is acceptable to him then we can keep chasing down infections.
However, Gary has developed a fistula. Fistulas are common problems post operatively. A fistula is a "tunnel or connection" between 2 places that should not be there. So, Gary's bladder did not completely heal from the last surgery and a fistula has formed between his bladder and his wound. So, instead of his urine naturally flowing out where it should it is now coming up out of his wound and you can only imagine what a wet mess this has become. Lake Sallee is what I refer to it as. So, next week we will go to Barth's office and Gary will have 2 nephrostomy tubes placed (tubes that go into the kidney and come out of the back to drain the urine). These tubes will bypass the bladder completely which will dry up the wound. The cancer in the bladder can grow without the flow of urine and thus in theory decreasing the chance of infection.
So, as if we weren't complicated enough for all of you we have once again added another twist to Gary's care. For now I will change the wound dressing (like 20 pads that make him look 6 months preggo) every 3 or so hours to keep Gary dry. Our schedule will be like it was when we had a newborn.
BTW - Happy Thanksgiving everyone. There are so many incredible people we need to give thanks to. The miracles and love that have come out of our tragic cancer battle are abundant and overflowing. Even though we probably face the unimaginable we give thanks and give thanks and give thanks for everything God has given us. Everytime we turn around we are showered with love and support and friendship and warmth. God has always provided for us through all of you and we just thank Him and you for everything. We could never thank all of you enough -ever!
So, after Thanksgiving we will talk to the 2 other boys and then we are going to live every single day to the fullest! We will have many early Christmas celebrations and just soak everything in!
But for now we look forward to tomorrow and tomorrow we will feast on turkey until we can't button our pants (maybe we should wear elastic waist pants like Gary does every day)! We will toast all of you because that is what we are so thankful for!
We can still pray for a miracle. We also need to pray for continual peace and comfort as well. BTW - my headache is gone and I feel 100% better!
Enjoy eachother and give thanks for everything you have been given by Our Father. We are all so fortunate!
With Love and Thanksgiving,
Lisa and Gary
Lots has happened over the past 24 hours since I last posted so I will catch you up to speed.
We talked to Zach in great detail. We both read When Children Grieve before speaking to Zach and we are so thankful for that book. I know I have mentioned the book before because it deals with ALL loss (pet death, divorce, death of a relative or friend, etc...). Love this book. Anyhow, we laughed together and we cried together and we prayed together and just talked very openly and it was more than Gary and I could have hoped for. So, thank you for your prayers.
Dr. Barth came in to talk with us and he spent almost an hour talking to Gary and to me and to Zach. Nothing has really changed from the previous correspondence with the exception of our home care. We are not on Hospice as per Dr. Barth's recommendation. Gary is eating plenty and his nutritional values are better than they have ever been. His liver functions are completely normal (which is kinda scary seeing as there is cancer in there) and his cancer has shrunk (ever so slightly but it has).
We are basically putting out fires at this point in time. As long as Gary feels okay and it not being killed by his pain and has a quality of life that is acceptable to him then we can keep chasing down infections.
However, Gary has developed a fistula. Fistulas are common problems post operatively. A fistula is a "tunnel or connection" between 2 places that should not be there. So, Gary's bladder did not completely heal from the last surgery and a fistula has formed between his bladder and his wound. So, instead of his urine naturally flowing out where it should it is now coming up out of his wound and you can only imagine what a wet mess this has become. Lake Sallee is what I refer to it as. So, next week we will go to Barth's office and Gary will have 2 nephrostomy tubes placed (tubes that go into the kidney and come out of the back to drain the urine). These tubes will bypass the bladder completely which will dry up the wound. The cancer in the bladder can grow without the flow of urine and thus in theory decreasing the chance of infection.
So, as if we weren't complicated enough for all of you we have once again added another twist to Gary's care. For now I will change the wound dressing (like 20 pads that make him look 6 months preggo) every 3 or so hours to keep Gary dry. Our schedule will be like it was when we had a newborn.
BTW - Happy Thanksgiving everyone. There are so many incredible people we need to give thanks to. The miracles and love that have come out of our tragic cancer battle are abundant and overflowing. Even though we probably face the unimaginable we give thanks and give thanks and give thanks for everything God has given us. Everytime we turn around we are showered with love and support and friendship and warmth. God has always provided for us through all of you and we just thank Him and you for everything. We could never thank all of you enough -ever!
So, after Thanksgiving we will talk to the 2 other boys and then we are going to live every single day to the fullest! We will have many early Christmas celebrations and just soak everything in!
But for now we look forward to tomorrow and tomorrow we will feast on turkey until we can't button our pants (maybe we should wear elastic waist pants like Gary does every day)! We will toast all of you because that is what we are so thankful for!
We can still pray for a miracle. We also need to pray for continual peace and comfort as well. BTW - my headache is gone and I feel 100% better!
Enjoy eachother and give thanks for everything you have been given by Our Father. We are all so fortunate!
With Love and Thanksgiving,
Lisa and Gary
Tuesday, November 25, 2008
TUESDAY UPDATE
So......I am having a very hard day. In a nutshell here is the latest........
Gary is coming home tomorrow. We have a meeting with Hospice tomorrow morning to get things set up.
Gary has something wrong with his bladder and the urine is leaking up through his wound. This is not fixable.
We had CT Scans and are waiting for the results. He is on antibiotics and he is being hydrated.
We have been told that Gary will probably not be alive at Christmas but we are hoping that he will be.
The thought of planning his Memorial before Christmas is heart breaking.
I have been crying for so long and I don't want to cry anymore.
My heart hurts so much. Just thinking about Gary actually dying is so incredibly painful.
I am taking Zach up to the hospital this afternoon and Gary and I are going to talk to him tonight and tell him what is going on. We will wait to talk to the other boys until we get Gary home and situated. Barth is coming in tonight to talk to Gary and I. He will be our Hospice doctor.
We ask that you pray for us. I know how many of your hearts are breaking right along with ours. I am so sorry that we all have to go through this.
If you were to see Gary or talk to him you would never ever in a million years at this point believe that he is actually going to die. He is so talkative and eating so well (despite the 20 pound weight loss). It's so hard to believe in a way.
My stress level is through the roof right now and I have had the mother of all migraines since 4 AM. None of the medicine I have is helping right now. Steph and Stacy had to drive me home this morning because of my headeache and I have been waiting to be able to drive. Stacy is picking the boys up in a few minutes and Zach and I should be on our way.
I know I am rambling but I also know I will get to a calm place and be able to focus. God is so good and he loves both Gary and me so much. I know His heart breaks right along with ours.
The boys went to Disneyland yesterday and now they get another fun evening (except Zach). I feel like we are ambushing him. I have been looking at him all day and thinking about how he has absolutely no idea what we are going to tell him. I feel so bad. I want to be strong but I know when we tell him that we are all going to fall apart.
I know that God will provide the wisdom we need to be able to talk to the kids.
Prayers, Peace, and Love,
Lisa
Gary is coming home tomorrow. We have a meeting with Hospice tomorrow morning to get things set up.
Gary has something wrong with his bladder and the urine is leaking up through his wound. This is not fixable.
We had CT Scans and are waiting for the results. He is on antibiotics and he is being hydrated.
We have been told that Gary will probably not be alive at Christmas but we are hoping that he will be.
The thought of planning his Memorial before Christmas is heart breaking.
I have been crying for so long and I don't want to cry anymore.
My heart hurts so much. Just thinking about Gary actually dying is so incredibly painful.
I am taking Zach up to the hospital this afternoon and Gary and I are going to talk to him tonight and tell him what is going on. We will wait to talk to the other boys until we get Gary home and situated. Barth is coming in tonight to talk to Gary and I. He will be our Hospice doctor.
We ask that you pray for us. I know how many of your hearts are breaking right along with ours. I am so sorry that we all have to go through this.
If you were to see Gary or talk to him you would never ever in a million years at this point believe that he is actually going to die. He is so talkative and eating so well (despite the 20 pound weight loss). It's so hard to believe in a way.
My stress level is through the roof right now and I have had the mother of all migraines since 4 AM. None of the medicine I have is helping right now. Steph and Stacy had to drive me home this morning because of my headeache and I have been waiting to be able to drive. Stacy is picking the boys up in a few minutes and Zach and I should be on our way.
I know I am rambling but I also know I will get to a calm place and be able to focus. God is so good and he loves both Gary and me so much. I know His heart breaks right along with ours.
The boys went to Disneyland yesterday and now they get another fun evening (except Zach). I feel like we are ambushing him. I have been looking at him all day and thinking about how he has absolutely no idea what we are going to tell him. I feel so bad. I want to be strong but I know when we tell him that we are all going to fall apart.
I know that God will provide the wisdom we need to be able to talk to the kids.
Prayers, Peace, and Love,
Lisa
Monday, November 24, 2008
Monday
Hi again.
We are on our way to Hoag now. Gary is being admitted to the 8th floor I think.
I will update tomorrow as to what is going on.
Don't freak. Nothing urgent - I think.........
Love, L
We are on our way to Hoag now. Gary is being admitted to the 8th floor I think.
I will update tomorrow as to what is going on.
Don't freak. Nothing urgent - I think.........
Love, L
MONDAY EARLY MORNING
Good Morning.
We just got home from Hoag. What a very long night.
I will not bother to bore you with details other than to say that we are not sure what is going on. We know that Gary has an infection because his white blood count is 28,000 (normal is 4,000-11,000). It might be the original C Diff or it might be a urinary infection that is irritating the intestines and causing fluid absorbtion in the intestine rather than the bladder (which would account for the lack of urine and the mass output in the illeostomy). They started him on 2 different antibiotics tonight.
So, we will wait for the cultures to come back and talk with the Infectious Disease Doctor in the morning. They wanted to admit Gary but after all this time of getting to know the routine and knowing that we can care for him at home we asked that he be able to come home so that we could bypass the dreaded hospital stay. Thank God for Dr. Carroll (Barth's partner) because he backed up our decision and here we are!!!
We are unwinding now and hopefully able to fall asleep. My migraine just went away and thank God I forgot to give Michele her Excedrin back because it squashed that dang headache tonight! I feel so bad because over the past few days I missed Jenn's awesome Creative Memories Party and I missed Wendy's surprise party. I will have to make it up to them as long as they don't hold their breath waiting for me to do so!!! :)
Off to hopefully a peaceful slumber! I am suppose to take the kids to Disneyland today with Steph. I guess we will see how that goes! I need to set up doctor appointments, get drugs sent to the house, and get Hospice in place within the next few days. We are going to pick our Hospice Company and doctor this week. Should be lots of fun!!!
Thank you for your love and prayers and I will let you all know what's happening as soon as we find out.
Good Night (or morning for those of you who are getting up and going to work).
Love, L
We just got home from Hoag. What a very long night.
I will not bother to bore you with details other than to say that we are not sure what is going on. We know that Gary has an infection because his white blood count is 28,000 (normal is 4,000-11,000). It might be the original C Diff or it might be a urinary infection that is irritating the intestines and causing fluid absorbtion in the intestine rather than the bladder (which would account for the lack of urine and the mass output in the illeostomy). They started him on 2 different antibiotics tonight.
So, we will wait for the cultures to come back and talk with the Infectious Disease Doctor in the morning. They wanted to admit Gary but after all this time of getting to know the routine and knowing that we can care for him at home we asked that he be able to come home so that we could bypass the dreaded hospital stay. Thank God for Dr. Carroll (Barth's partner) because he backed up our decision and here we are!!!
We are unwinding now and hopefully able to fall asleep. My migraine just went away and thank God I forgot to give Michele her Excedrin back because it squashed that dang headache tonight! I feel so bad because over the past few days I missed Jenn's awesome Creative Memories Party and I missed Wendy's surprise party. I will have to make it up to them as long as they don't hold their breath waiting for me to do so!!! :)
Off to hopefully a peaceful slumber! I am suppose to take the kids to Disneyland today with Steph. I guess we will see how that goes! I need to set up doctor appointments, get drugs sent to the house, and get Hospice in place within the next few days. We are going to pick our Hospice Company and doctor this week. Should be lots of fun!!!
Thank you for your love and prayers and I will let you all know what's happening as soon as we find out.
Good Night (or morning for those of you who are getting up and going to work).
Love, L
Sunday, November 23, 2008
Sunday Night
HI everyone.
I just wanted you all to be praying for us as we head to the ER at Hoag. Gary's urine output has not improved and his C Diff seems to be out of control. He does not feel sick or bad besides the usual pain but we have to get him checked to find out what is going wrong besides the obvious.
Please keep us in our prayers as I think we might be faced with very tough news and decisions tonight regarding where to go from here with Gary's care.
Love Always,
Lisa
I just wanted you all to be praying for us as we head to the ER at Hoag. Gary's urine output has not improved and his C Diff seems to be out of control. He does not feel sick or bad besides the usual pain but we have to get him checked to find out what is going wrong besides the obvious.
Please keep us in our prayers as I think we might be faced with very tough news and decisions tonight regarding where to go from here with Gary's care.
Love Always,
Lisa
Sunday Morning
I woke up at 1 AM and Gary had a 103.4 fever. I have been hydrating him for days and he has been drinking but has little urine output. My thoughts and fears is that this tumor in his bladder is either doing 1 of 2 things. It is either growing partially in front of the super pubic tube or it has caused a tear in the bladder wall and he is leaking into his body. Now, I am not a doctor and I could be totally wrong.
We might have to go to the ER today instead of waiting to call doctors tomorrow. I do not want him to become septic. I am going to wait and see how he is doing to make a decision. I think at this point (although he is not ready to give up by any means) I need to get Hospice on board because they can help with all of these decisions.
I just wanted to give you a brief update to let you know what was happening with Gary.
I hope you all have a very blessed Sunday!
Love, Lisa
We might have to go to the ER today instead of waiting to call doctors tomorrow. I do not want him to become septic. I am going to wait and see how he is doing to make a decision. I think at this point (although he is not ready to give up by any means) I need to get Hospice on board because they can help with all of these decisions.
I just wanted to give you a brief update to let you know what was happening with Gary.
I hope you all have a very blessed Sunday!
Love, Lisa
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