Amber's Update
We are praying for no pain for this beautiful little angel. We are praying for peace for the entire family. And I will forever be praying for a miracle.
Here is Melissa's most recent update: Just to let you know, they made it home because we have angels walking among us, and those angels knew Amber needed to be home with her whole family. Amber touched down with her daddy minutes ago ( Becky just called) and is on her way to Akron Children's Hospital, then will head home to be where she needs to be. Thank you for your prayers. For EVERYTHING:
Sorry for the lapse. As we have said before every step forward has given us 2 steps back. Amber's pain was getting better and seems like they were going in the right direction and she was even walking. Then on Saturday in the early evening she started complaining of a lot of pain in her right lung. We took her to the hospital and they did an x-ray that showed fluid around the lung. Mainly the left (a lot of fluid) just a small amount by the right. So they had her transported to where we are now which is Miller childrens in long beach. She is in the PICU and will be. This is where we are at with her care. The fluid in the lungs ended up not being just fluid and they were unable to drain her. It is actually gelatin like and can be assumed to be tumor filled. We are still waiting on confirmation of that but as of now that is regardless. We can see the area on her head raised up more and she has been having bad back pain and spine pain now too. So her wishes are to see her family in Ohio. The problem is that since the fluid could not be drained flying is more tricky. They are working on finding a service such as an angel flight that will fly her. So far the california angels said they could only fly no more than 1000 miles. They are still trying angel flight and another. We have no word yet on that. They did tell us that it may take a week or two. That is where the problem comes in. We may not have a week or two. So today was filled with many tears and talking with Amber about her wishes. She made the decision to try to get back home to ohio. If something happens before that she has chosen to be intubaited and put on a ventilator so that she has a chance to say goodbye to family that mentioned that they would want to fly here to see her. Then once goodbyes are said we will see how she goes from there. If she continues to get worse or it happens that she is being kept alive but not waking up anymore then we will turn the ventilator off. I don't want to do that but I will honor whatever wishes she has. I am just focusing on praying that we make it back to ohio and these decisions will not have to be addressed. We had a meeting with the priest here because I thought that we should not take her off the ventilator from what I heard as a kid. He said that there is no sin involved with that and we would have the right to decide to turn off the machine. The options for the flight is that they will only fly her with a DNR code so there is a chance if her cancer takes over then they will keep her asleep with pain meds until she passes. The flight they said will cause no greater risk on her lung the issue is only when the cancer will over take her. If she makes it to Ohio then her wish is to be at home and when we get off the plane they will have to take her to the hospital to get her set up and then will be discharged with hospice care. Then we will just keep her comfortable with meds so that she doesn't feel the pain. She is so amazing with all that is being asked of her and is still so strong. Of course tears have been shed and we have had some good talks with her but for the most part she is here chit chatting with Brittany and Nick and having time together even reminiscing on family times of past. Many good memories we have shared as a family. They love each other more than words can ever express. So that is where we are at now. I ask of you for your prayers to allow her to travel back quickly and safely to Ohio. In the meantime if anyone knows any options of a type of angel flight service that will fly over 1000 miles let us know. I know Jim will be researching tonight too. They told us too that they have to see what the insurance would cover and I told them to not let that be a determination on getting her home. We know that CA doesn't accept HMO. I wish so much of this wasn't so focused on getting money in hand before they address a situation like this. I think it is almost 2,000 miles. Plus Amber needs to fly with oxygen and a pain pump. Also Amber really wants to fly as a family but from what I know from Angel flight they will only fly a parent and child. So we (once we know what they found for Amber) will have to arrange quickly a flight for the kids and probably Jim since I don't even know how to get to the airport. Also Amber, Jim and I wish to go to Akron Childrens hospital since it is close to home and but since she doesn't have a doctor there we have to see if they will accept her. Ann if you're reading this and hear about this request on your end maybe you can help us. As far as I know I think that is where you are at now. Otherwise we will have to go to Rainbows and then it is a longer trip to get her home from the hospital. Finally we have to get with the medina hospice to get that in place so that they will be ready to get her home from the hospital so she is not spending extra time there than being at home. I am hoping that the people here may contact them to make them aware of the situation but I don't know for sure and I want to have everything prepared. I think that is everything. We are trying to deal with it when we have to and keep our minds off of it every chance we get so that we can spend our time enjoying the time we do have and not worry about the time we won't. As far as I know I am blessed to have her in my life for any amount of time because I know I don't deserve even that. I am lucky to say she is my daughter. If anyone has any info that they want to pass to us you can email Jim I will probably not be checking mine for awhile. His is dugan151@yahoo.com Thank you for all your prayers and all the donations and events that have been done in her honor over these past five years. We are eternally grateful for all the support you have given to our family. I will update when I know more. Thank you again!!!!!!! Melissa
Here is Melissa's most recent update: Just to let you know, they made it home because we have angels walking among us, and those angels knew Amber needed to be home with her whole family. Amber touched down with her daddy minutes ago ( Becky just called) and is on her way to Akron Children's Hospital, then will head home to be where she needs to be. Thank you for your prayers. For EVERYTHING:
Sorry for the lapse. As we have said before every step forward has given us 2 steps back. Amber's pain was getting better and seems like they were going in the right direction and she was even walking. Then on Saturday in the early evening she started complaining of a lot of pain in her right lung. We took her to the hospital and they did an x-ray that showed fluid around the lung. Mainly the left (a lot of fluid) just a small amount by the right. So they had her transported to where we are now which is Miller childrens in long beach. She is in the PICU and will be. This is where we are at with her care. The fluid in the lungs ended up not being just fluid and they were unable to drain her. It is actually gelatin like and can be assumed to be tumor filled. We are still waiting on confirmation of that but as of now that is regardless. We can see the area on her head raised up more and she has been having bad back pain and spine pain now too. So her wishes are to see her family in Ohio. The problem is that since the fluid could not be drained flying is more tricky. They are working on finding a service such as an angel flight that will fly her. So far the california angels said they could only fly no more than 1000 miles. They are still trying angel flight and another. We have no word yet on that. They did tell us that it may take a week or two. That is where the problem comes in. We may not have a week or two. So today was filled with many tears and talking with Amber about her wishes. She made the decision to try to get back home to ohio. If something happens before that she has chosen to be intubaited and put on a ventilator so that she has a chance to say goodbye to family that mentioned that they would want to fly here to see her. Then once goodbyes are said we will see how she goes from there. If she continues to get worse or it happens that she is being kept alive but not waking up anymore then we will turn the ventilator off. I don't want to do that but I will honor whatever wishes she has. I am just focusing on praying that we make it back to ohio and these decisions will not have to be addressed. We had a meeting with the priest here because I thought that we should not take her off the ventilator from what I heard as a kid. He said that there is no sin involved with that and we would have the right to decide to turn off the machine. The options for the flight is that they will only fly her with a DNR code so there is a chance if her cancer takes over then they will keep her asleep with pain meds until she passes. The flight they said will cause no greater risk on her lung the issue is only when the cancer will over take her. If she makes it to Ohio then her wish is to be at home and when we get off the plane they will have to take her to the hospital to get her set up and then will be discharged with hospice care. Then we will just keep her comfortable with meds so that she doesn't feel the pain. She is so amazing with all that is being asked of her and is still so strong. Of course tears have been shed and we have had some good talks with her but for the most part she is here chit chatting with Brittany and Nick and having time together even reminiscing on family times of past. Many good memories we have shared as a family. They love each other more than words can ever express. So that is where we are at now. I ask of you for your prayers to allow her to travel back quickly and safely to Ohio. In the meantime if anyone knows any options of a type of angel flight service that will fly over 1000 miles let us know. I know Jim will be researching tonight too. They told us too that they have to see what the insurance would cover and I told them to not let that be a determination on getting her home. We know that CA doesn't accept HMO. I wish so much of this wasn't so focused on getting money in hand before they address a situation like this. I think it is almost 2,000 miles. Plus Amber needs to fly with oxygen and a pain pump. Also Amber really wants to fly as a family but from what I know from Angel flight they will only fly a parent and child. So we (once we know what they found for Amber) will have to arrange quickly a flight for the kids and probably Jim since I don't even know how to get to the airport. Also Amber, Jim and I wish to go to Akron Childrens hospital since it is close to home and but since she doesn't have a doctor there we have to see if they will accept her. Ann if you're reading this and hear about this request on your end maybe you can help us. As far as I know I think that is where you are at now. Otherwise we will have to go to Rainbows and then it is a longer trip to get her home from the hospital. Finally we have to get with the medina hospice to get that in place so that they will be ready to get her home from the hospital so she is not spending extra time there than being at home. I am hoping that the people here may contact them to make them aware of the situation but I don't know for sure and I want to have everything prepared. I think that is everything. We are trying to deal with it when we have to and keep our minds off of it every chance we get so that we can spend our time enjoying the time we do have and not worry about the time we won't. As far as I know I am blessed to have her in my life for any amount of time because I know I don't deserve even that. I am lucky to say she is my daughter. If anyone has any info that they want to pass to us you can email Jim I will probably not be checking mine for awhile. His is dugan151@yahoo.com Thank you for all your prayers and all the donations and events that have been done in her honor over these past five years. We are eternally grateful for all the support you have given to our family. I will update when I know more. Thank you again!!!!!!! Melissa
Prayers and love to them and you.
Posted by
Missy B |
May 14, 2009 at 12:00 AM
I can't fathom...
Posted by
Missy |
May 14, 2009 at 8:34 AM
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