skuttle
DIS Veteran
- Joined
- Apr 23, 2000
- Messages
- 7,411
Some of you may remember that I posted about Baby Allie a while back. You can read that thread here
The following was posted today on the family's website, www.scotthousehold.com
Please keep them in your thoughts and prayers during this difficult time.
Medical treatment has been stopped for Allie. No more gleevec, no mylotarg, no chemo, no neupogen. Nothing is working, simply causing her pain and discomfort. We risk aspirating into her lungs and causing pneumonia if we continue with the gleevec (since she is so sedated, she isn't swallowing well). Mylotarg would rip her to pieces. Dr. Weinthal said something yesterday that has stayed with me. He believes, and I have to agree with him, in human dignity, even in infants, and especially in death. Just because a drug is out there, does not mean we have to use it. Not when we know it would hurt her even worse. We will not strip her of her dignity.
Blood tests will only be done every other day from now on. She is not making her own red blood cells, and it doesn't make sense for us to deplete her even more each day with blood tests. Dr. Weinthal feels that there is a strong possibility that the leukemia has spread to her brain. This is a likely place for it to go, especially after a relapse. The only way to know for sure is to do a spinal tap. We won't do that. It would hurt her and we wouldn't do anything with the information.
"Comfort measures" is what is being done now. She remains on her fentanyl and versed drips and TPN and lipids for nourishment. Blood transfusions will be done as needed. Red cells give the body oxygen. Suffocating to death is not something we want to see happen. Without platelets in her body, she would bleed to death. She needs oxygen to keep her at an acceptable level. Her fevers still persist, at least once or twice a day. She isn't arching her back anymore, so I think she does feel better now that the neupogen has been stopped.
We don't know how long Allie has. Days, maybe weeks. When she is awake, we try to make the best of our times. We need to make our minutes feel like months and our hours feel like years. We don't have years with her, so we want to appreciate and value our time together. We kiss her all over. I spent twenty minutes this afternoon just gently rubbing her foot.
She has been awake a few times today. Once for over an hour and a half. She doesn't cry, simply looks around. As of now, her pain is being managed. She clutches her new favorite toy, a little pink ring with a mouse face, at all times, even in her sleep. She has given us a few raspberries and stroked our faces.
I won't lie and say I'm okay. I'm not. Seeing my baby like this is the worst imaginable. I alternate between despair, numbness, and peace. I do feel a bit at peace with this. I'm not okay with it, but I am looking for peace. Allie's life has been beautiful. I want it to be beautiful until her last breath. People live their entire lives without influencing others on making a significant impact. In her less than nine months, Allie has changed the way people love their families. Her life, brought to you by my words and Andrew's website creation, have reached people as far as Australia, Ireland, Hong Kong, and every state in the US. We get over 10,000 hits to our website a day. Sometimes closer to 20,000.
Allie has made me a better person. I know she has impacted many people. I know that her story will live on. People will go out and donate blood, sign up for the bone marrow registry, participate in events such as Light the Night and Team in Training. They will do this and remember Allie.
In the time we have remaining with Allie, we are going to try to celebrate her life. We will have to make some difficult decisions. We don't want to stress over our financial struggles, though I know we will incur some. We want to focus our energy into loving Allie, loving each other, and loving our family and friends.
Please pray for comfort, no infections to hurt her worse, and for an easy passing. I will hold on to the hope of a miracle, but I also need to try to accept what will most likely happen. We don't want this to extend long for her. That is not a good life.
I think she is getting ready to fly....my angel on earth needing to return to Heaven.
I just can't imagine what this family is going through. 
The following was posted today on the family's website, www.scotthousehold.com
Please keep them in your thoughts and prayers during this difficult time.
Medical treatment has been stopped for Allie. No more gleevec, no mylotarg, no chemo, no neupogen. Nothing is working, simply causing her pain and discomfort. We risk aspirating into her lungs and causing pneumonia if we continue with the gleevec (since she is so sedated, she isn't swallowing well). Mylotarg would rip her to pieces. Dr. Weinthal said something yesterday that has stayed with me. He believes, and I have to agree with him, in human dignity, even in infants, and especially in death. Just because a drug is out there, does not mean we have to use it. Not when we know it would hurt her even worse. We will not strip her of her dignity.
Blood tests will only be done every other day from now on. She is not making her own red blood cells, and it doesn't make sense for us to deplete her even more each day with blood tests. Dr. Weinthal feels that there is a strong possibility that the leukemia has spread to her brain. This is a likely place for it to go, especially after a relapse. The only way to know for sure is to do a spinal tap. We won't do that. It would hurt her and we wouldn't do anything with the information.
"Comfort measures" is what is being done now. She remains on her fentanyl and versed drips and TPN and lipids for nourishment. Blood transfusions will be done as needed. Red cells give the body oxygen. Suffocating to death is not something we want to see happen. Without platelets in her body, she would bleed to death. She needs oxygen to keep her at an acceptable level. Her fevers still persist, at least once or twice a day. She isn't arching her back anymore, so I think she does feel better now that the neupogen has been stopped.
We don't know how long Allie has. Days, maybe weeks. When she is awake, we try to make the best of our times. We need to make our minutes feel like months and our hours feel like years. We don't have years with her, so we want to appreciate and value our time together. We kiss her all over. I spent twenty minutes this afternoon just gently rubbing her foot.
She has been awake a few times today. Once for over an hour and a half. She doesn't cry, simply looks around. As of now, her pain is being managed. She clutches her new favorite toy, a little pink ring with a mouse face, at all times, even in her sleep. She has given us a few raspberries and stroked our faces.
I won't lie and say I'm okay. I'm not. Seeing my baby like this is the worst imaginable. I alternate between despair, numbness, and peace. I do feel a bit at peace with this. I'm not okay with it, but I am looking for peace. Allie's life has been beautiful. I want it to be beautiful until her last breath. People live their entire lives without influencing others on making a significant impact. In her less than nine months, Allie has changed the way people love their families. Her life, brought to you by my words and Andrew's website creation, have reached people as far as Australia, Ireland, Hong Kong, and every state in the US. We get over 10,000 hits to our website a day. Sometimes closer to 20,000.
Allie has made me a better person. I know she has impacted many people. I know that her story will live on. People will go out and donate blood, sign up for the bone marrow registry, participate in events such as Light the Night and Team in Training. They will do this and remember Allie.
In the time we have remaining with Allie, we are going to try to celebrate her life. We will have to make some difficult decisions. We don't want to stress over our financial struggles, though I know we will incur some. We want to focus our energy into loving Allie, loving each other, and loving our family and friends.
Please pray for comfort, no infections to hurt her worse, and for an easy passing. I will hold on to the hope of a miracle, but I also need to try to accept what will most likely happen. We don't want this to extend long for her. That is not a good life.
I think she is getting ready to fly....my angel on earth needing to return to Heaven.
I just can't imagine what this family is going through. 
