M
MARIPOSA
Guest
Posted tonight by Cindy, Elliot's Mama, on his CaringBridge site.
Ok, what a long and emotional day. Almost all our questions had answers, some before we asked. Not sure where to start so I guess I will just go down my list.
First of all, IF all things that are in motion go the way intended, Elliott will begin the transplant procedure on November 12th and be receiving the bone marrow either on November 20th or 21st, right before Thanksgiving, And there is NOTHING I could be more thankful for than my son’s life. So at your Thanksgiving tables this year, please include an extra prayer for this very special child.
If they go with the donor they are working on, it is a 27 year old male from the US. That is all we get to know for now.
They, meaning the doctors, are not positive if Elliott is dealing with ALL along with his MDS and AML. They are meeting Wednesday to come to some conclusion. If they believe he is or are not sure, he will be getting full body radiation. If they are sure he is not, the radiation will not have to happen. Of course you know what we are hoping for. Then once they determine that, they are calling the donor to set up the date. Of course everything is going to be determined by his schedule and the schedule of the place taking the marrow from him. If they can do it according to the doctor’s wishes and Elliott is doing radiation, it will start the 12th. Four days of radiation, twice a day and three days of chemo and one day of rest and then the transplant. I originally was going to be there for that 9 days, but the doctor said the worst would be 7-10 after. So I am going the evening before the transplant and staying for as long as I can or as long as Elliott needs it. Since the transplant will be during Thanksgiving week, I will have a little extra time with him. The first 3-6 months are the most critical with liver problems, infections and other things that can threaten his life. I believe the doctor said that they lose about 30% from complications. L I started to cry when I was writing that part down. But I know I have NO control on that stuff and the doctors will do the best they can to fix this kind of stuff. We were told an average stay in the hospital from the beginning of the radiation until he can be released to the Kohl house would be about 6 weeks and then a minimum of 6 weeks at the Kohl’s house. Of course there is no way of telling how long for sure but that is a guess as of right now.
We visited the Kohl house today. What a lovely place. Beats the hospital for somewhere to stay. The hospital room is not too inviting. There is no bed for the parents, just a stupid recliner. Dan already told them that this will not do for six weeks. I swear they are going to kill us with this kind of sleeping arrangements. The social worker said she would look into a cot. I am wondering if we could bring our air mattress. And only one parent in the room at night. Maybe we can talk them into two but I doubt it. Which means Dan and I have to be separated there too. It really is asking for the moon from us. Some good news is that they will allow visitors and once in the Kohl house, Elliott can have a friend spend the night. They said good for his spirit and I agree. Just finding a way to get them down there…I hope Bill can find some free time to drive Zach down once in a while. I know it is a long ride but it is SO important. And the other kids can hopefully find a way down too. Since I am going from work on my weekends, I won’t be able to take them.
I am going to close this for now, it has become a novel and I am exhausted. I hope you all found this information useful and interesting.
Ok, what a long and emotional day. Almost all our questions had answers, some before we asked. Not sure where to start so I guess I will just go down my list.
First of all, IF all things that are in motion go the way intended, Elliott will begin the transplant procedure on November 12th and be receiving the bone marrow either on November 20th or 21st, right before Thanksgiving, And there is NOTHING I could be more thankful for than my son’s life. So at your Thanksgiving tables this year, please include an extra prayer for this very special child.
If they go with the donor they are working on, it is a 27 year old male from the US. That is all we get to know for now.
They, meaning the doctors, are not positive if Elliott is dealing with ALL along with his MDS and AML. They are meeting Wednesday to come to some conclusion. If they believe he is or are not sure, he will be getting full body radiation. If they are sure he is not, the radiation will not have to happen. Of course you know what we are hoping for. Then once they determine that, they are calling the donor to set up the date. Of course everything is going to be determined by his schedule and the schedule of the place taking the marrow from him. If they can do it according to the doctor’s wishes and Elliott is doing radiation, it will start the 12th. Four days of radiation, twice a day and three days of chemo and one day of rest and then the transplant. I originally was going to be there for that 9 days, but the doctor said the worst would be 7-10 after. So I am going the evening before the transplant and staying for as long as I can or as long as Elliott needs it. Since the transplant will be during Thanksgiving week, I will have a little extra time with him. The first 3-6 months are the most critical with liver problems, infections and other things that can threaten his life. I believe the doctor said that they lose about 30% from complications. L I started to cry when I was writing that part down. But I know I have NO control on that stuff and the doctors will do the best they can to fix this kind of stuff. We were told an average stay in the hospital from the beginning of the radiation until he can be released to the Kohl house would be about 6 weeks and then a minimum of 6 weeks at the Kohl’s house. Of course there is no way of telling how long for sure but that is a guess as of right now.
We visited the Kohl house today. What a lovely place. Beats the hospital for somewhere to stay. The hospital room is not too inviting. There is no bed for the parents, just a stupid recliner. Dan already told them that this will not do for six weeks. I swear they are going to kill us with this kind of sleeping arrangements. The social worker said she would look into a cot. I am wondering if we could bring our air mattress. And only one parent in the room at night. Maybe we can talk them into two but I doubt it. Which means Dan and I have to be separated there too. It really is asking for the moon from us. Some good news is that they will allow visitors and once in the Kohl house, Elliott can have a friend spend the night. They said good for his spirit and I agree. Just finding a way to get them down there…I hope Bill can find some free time to drive Zach down once in a while. I know it is a long ride but it is SO important. And the other kids can hopefully find a way down too. Since I am going from work on my weekends, I won’t be able to take them.
I am going to close this for now, it has become a novel and I am exhausted. I hope you all found this information useful and interesting.