Loss of my daughter Perri

[Andrew.miller8]

Lost my beautiful daughter Perri two years ago- on February 5. She suffered a relapse of the leukemia that afflicted her. She was lucky enough to be accepted as a bone marrow transplant candidate. The process usually takes one to one and one half months but she stayed in the hospital because of some complications, such as graft verus host disease. She was such a beautiful little fighter. When the doctors released her from the hospital we were overjoyed. But we had to take over many of the tasks the nurses did at the hospital. I had to prepare and give her her medicines three times a day. I also had to make sure she was getting formula through her feeding tube in the morning and the night. My wife helped with me of course but she had to take care of our twins. Perri needed oxygen at night because she stayed in bed frie the three months and the small air sacs called alveoli had collapsed partially in her lungs. It was a struggle to get her to wear her nasal canula each night. I slept with her and monitored her pulsox readings - the amount of oxygen in her blood. Eventually she came to need more and more oxygen. I call the oncology fellows on call during the period and they said it was ok to raise her oxygen. Then in the morning I went back to my routine of giving her her meds etc. I missed the forest for the trees I think. I think now I should have taken her into the oncology clinc during the day to have her fully examined. The doctors then could have caught the pneumonia that carried her away. Eventually affter three nights of raising her oxygen we had to take her to the hospital because her pulsox was so low. She was confirmed to have pneumonia which developed into acute respiratory distress syndrome. The docs thought she had a 70 percent chance of pulling through but after 18 days she caught another disease probably a virus and the doctors told us she had no chance of living. We removed the breathing tube and she died peacefully under sedation. I want to focus on the great memories I have of Perri. She made everyone Eshelman met smile. She was born with Down syndrome but had no physical limitations. She loved climbing trees and playing sports, which she was quite good at. Her language skills were really blossoming right before her relapse. At her first grade spring parent teacher conference she read us three books she had written. And who said children Down syndrome couldnt read. But then she relapsed. I still feel it was my fault for not taking her into the hospital when the warning signs came and she probably had pneumonia. We had one other piece of bad luck. Our primary insurance refused to give us a night nurse. We appealled and wasted a week or so. Then her medicaid insurance approved the night nurse but she was not supposed to start until the day we took Perri to the hospital. If the night nurse had been with her when the fellows were telling us it was ok to raise the oxygen the nurse probably would have assessed Perri as having pneumonia. So many missed chances. And all her doctor said was it was unusual for a transplant patient to develop pneumonia at that stage. Why didn't I bring her in for a chest xrray when the oxygen went up. I blame myself two years later and probably will for the rest of my life. It has affected me. I don't smile anymore. I have a hard time expressing happiness with my remaining children. I feel miserable except at work where I am distracted. Does any one else feel this guilt? I would like to hear from you. Thank you very much

[Kenn]

Hi Andrew,

My beautiful daughter died in July, and I did battle with the guilt and what if I had only done so many things. The problem with that is that I finally realized I'm not God. I didn't know what to do, or I would have done it. It is the same for you. You are such an inspiration to me. I love the example of love you showed for your daughter by all the sacrifices you made. How much can a person do before it is enough. All we can do is all we can do. You did your best. Please give up your notions that her death was somehow your fault.

After my daughter died I had a hard time functioning because I blamed myself for almost everything that went wrong in her life. It took me a while to be able to look at reality and realize that I did everything I could trying to save her. I just didn't know how.

At first I thought I would never be able to smile again. Finally I realized the rest of my family needed to see me smile, so I started forcing myself to smile whether I felt like it or not. The fake it until you make it thing. Pretty soon the smiles came naturally, and it feels good to be able to help my other children smile and go on with life. They don't need to have to worry about me.

I think all parents naturally feel that guilt, it is just part of the grieving process. I'm so sorry for your loss. I pray that you will find comfort in realizing that you did all you knew to do. You really are an inspiration to me.

Lost my beautiful daughter Perri two years ago- on February 5. She suffered a relapse of the leukemia that afflicted her. She was lucky enough to be accepted as a bone marrow transplant candidate. The process usually takes one to one and one half months but she stayed in the hospital because of some complications, such as graft verus host disease. She was such a beautiful little fighter. When the doctors released her from the hospital we were overjoyed. But we had to take over many of the tasks the nurses did at the hospital. I had to prepare and give her her medicines three times a day. I also had to make sure she was getting formula through her feeding tube in the morning and the night. My wife helped with me of course but she had to take care of our twins. Perri needed oxygen at night because she stayed in bed frie the three months and the small air sacs called alveoli had collapsed partially in her lungs. It was a struggle to get her to wear her nasal canula each night. I slept with her and monitored her pulsox readings - the amount of oxygen in her blood. Eventually she came to need more and more oxygen. I call the oncology fellows on call during the period and they said it was ok to raise her oxygen. Then in the morning I went back to my routine of giving her her meds etc. I missed the forest for the trees I think. I think now I should have taken her into the oncology clinc during the day to have her fully examined. The doctors then could have caught the pneumonia that carried her away. Eventually affter three nights of raising her oxygen we had to take her to the hospital because her pulsox was so low. She was confirmed to have pneumonia which developed into acute respiratory distress syndrome. The docs thought she had a 70 percent chance of pulling through but after 18 days she caught another disease probably a virus and the doctors told us she had no chance of living. We removed the breathing tube and she died peacefully under sedation. I want to focus on the great memories I have of Perri. She made everyone Eshelman met smile. She was born with Down syndrome but had no physical limitations. She loved climbing trees and playing sports, which she was quite good at. Her language skills were really blossoming right before her relapse. At her first grade spring parent teacher conference she read us three books she had written. And who said children Down syndrome couldnt read. But then she relapsed. I still feel it was my fault for not taking her into the hospital when the warning signs came and she probably had pneumonia. We had one other piece of bad luck. Our primary insurance refused to give us a night nurse. We appealled and wasted a week or so. Then her medicaid insurance approved the night nurse but she was not supposed to start until the day we took Perri to the hospital. If the night nurse had been with her when the fellows were telling us it was ok to raise the oxygen the nurse probably would have assessed Perri as having pneumonia. So many missed chances. And all her doctor said was it was unusual for a transplant patient to develop pneumonia at that stage. Why didn't I bring her in for a chest xrray when the oxygen went up. I blame myself two years later and probably will for the rest of my life. It has affected me. I don't smile anymore. I have a hard time expressing happiness with my remaining children. I feel miserable except at work where I am distracted. Does any one else feel this guilt? I would like to hear from you. Thank you very much

[Andrew.miller8]

Hey Daddy,

Thank you so much for your comforting and wise words. I am trying to work with the guilt and smile again.

[robyn]

Lost my beautiful daughter Perri two years ago- on February 5. She suffered a relapse of the leukemia that afflicted her. She was lucky enough to be accepted as a bone marrow transplant candidate. The process usually takes one to one and one half months but she stayed in the hospital because of some complications, such as graft verus host disease. She was such a beautiful little fighter. When the doctors released her from the hospital we were overjoyed. But we had to take over many of the tasks the nurses did at the hospital. I had to prepare and give her her medicines three times a day. I also had to make sure she was getting formula through her feeding tube in the morning and the night. My wife helped with me of course but she had to take care of our twins. Perri needed oxygen at night because she stayed in bed frie the three months and the small air sacs called alveoli had collapsed partially in her lungs. It was a struggle to get her to wear her nasal canula each night. I slept with her and monitored her pulsox readings - the amount of oxygen in her blood. Eventually she came to need more and more oxygen. I call the oncology fellows on call during the period and they said it was ok to raise her oxygen. Then in the morning I went back to my routine of giving her her meds etc. I missed the forest for the trees I think. I think now I should have taken her into the oncology clinc during the day to have her fully examined. The doctors then could have caught the pneumonia that carried her away. Eventually affter three nights of raising her oxygen we had to take her to the hospital because her pulsox was so low. She was confirmed to have pneumonia which developed into acute respiratory distress syndrome. The docs thought she had a 70 percent chance of pulling through but after 18 days she caught another disease probably a virus and the doctors told us she had no chance of living. We removed the breathing tube and she died peacefully under sedation. I want to focus on the great memories I have of Perri. She made everyone Eshelman met smile. She was born with Down syndrome but had no physical limitations. She loved climbing trees and playing sports, which she was quite good at. Her language skills were really blossoming right before her relapse. At her first grade spring parent teacher conference she read us three books she had written. And who said children Down syndrome couldnt read. But then she relapsed. I still feel it was my fault for not taking her into the hospital when the warning signs came and she probably had pneumonia. We had one other piece of bad luck. Our primary insurance refused to give us a night nurse. We appealled and wasted a week or so. Then her medicaid insurance approved the night nurse but she was not supposed to start until the day we took Perri to the hospital. If the night nurse had been with her when the fellows were telling us it was ok to raise the oxygen the nurse probably would have assessed Perri as having pneumonia. So many missed chances. And all her doctor said was it was unusual for a transplant patient to develop pneumonia at that stage. Why didn't I bring her in for a chest xrray when the oxygen went up. I blame myself two years later and probably will for the rest of my life. It has affected me. I don't smile anymore. I have a hard time expressing happiness with my remaining children. I feel miserable except at work where I am distracted. Does any one else feel this guilt? I would like to hear from you. Thank you very much

Andrew,

The guilt comes with the territory, I'm afraid. We all agonize over missed opportunities and signs we think we should have seen. You know the old saying "Hindsight is 20-20". My daughter went home almost 3 months ago, and I wonder should I have said something about how she looked tired or maybe a little too thin? WOuld it have changed anything? Probably not. In your case, there is no way you could have seen what was coming. I agree that the docs should have known. I sometimes think that specialists charge the most and know the least. You spend enough years devoted to one body system, and forget what happens to the rest.

Some parts of your recovery are an act of will. Please take some time to watch your other children and let yourself feel the joy that they will- WILL- give you. Each one is a miracle. You owe that to yourself.

I spent 32 years in medicine, and I have to say, the children with Down's were the sweetest angels I ever worked with, and their parents the most devoted. Quite a few of them were savants. It doesn't surprise me when someone says that children with Down's can do more than many think.

For now, give yourself, at least some, of the credit you deserve. You love your child and your child loves you. You WILL see Perri again, and you can know that you will never be separated ever again.

[Maddy6]

1329242657' post='83938']

Lost my beautiful daughter Perri two years ago- on February 5. She suffered a relapse of the leukemia that afflicted her. She was lucky enough to be accepted as a bone marrow transplant candidate. The process usually takes one to one and one half months but she stayed in the hospital because of some complications, such as graft verus host disease. She was such a beautiful little fighter. When the doctors released her from the hospital we were overjoyed. But we had to take over many of the tasks the nurses did at the hospital. I had to prepare and give her her medicines three times a day. I also had to make sure she was getting formula through her feeding tube in the morning and the night. My wife helped with me of course but she had to take care of our twins. Perri needed oxygen at night because she stayed in bed frie the three months and the small air sacs called alveoli had collapsed partially in her lungs. It was a struggle to get her to wear her nasal canula each night. I slept with her and monitored her pulsox readings - the amount of oxygen in her blood. Eventually she came to need more and more oxygen. I call the oncology fellows on call during the period and they said it was ok to raise her oxygen. Then in the morning I went back to my routine of giving her her meds etc. I missed the forest for the trees I think. I think now I should have taken her into the oncology clinc during the day to have her fully examined. The doctors then could have caught the pneumonia that carried her away. Eventually affter three nights of raising her oxygen we had to take her to the hospital because her pulsox was so low. She was confirmed to have pneumonia which developed into acute respiratory distress syndrome. The docs thought she had a 70 percent chance of pulling through but after 18 days she caught another disease probably a virus and the doctors told us she had no chance of living. We removed the breathing tube and she died peacefully under sedation. I want to focus on the great memories I have of Perri. She made everyone Eshelman met smile. She was born with Down syndrome but had no physical limitations. She loved climbing trees and playing sports, which she was quite good at. Her language skills were really blossoming right before her relapse. At her first grade spring parent teacher conference she read us three books she had written. And who said children Down syndrome couldnt read. But then she relapsed. I still feel it was my fault for not taking her into the hospital when the warning signs came and she probably had pneumonia. We had one other piece of bad luck. Our primary insurance refused to give us a night nurse. We appealled and wasted a week or so. Then her medicaid insurance approved the night nurse but she was not supposed to start until the day we took Perri to the hospital. If the night nurse had been with her when the fellows were telling us it was ok to raise the oxygen the nurse probably would have assessed Perri as having pneumonia. So many missed chances. And all her doctor said was it was unusual for a transplant patient to develop pneumonia at that stage. Why didn't I bring her in for a chest xrray when the oxygen went up. I blame myself two years later and probably will for the rest of my life. It has affected me. I don't smile anymore. I have a hard time expressing happiness with my remaining children. I feel miserable except at work where I am distracted. Does any one else feel this guilt? I would like to hear from you. Thank you very much

Andrew,Believe me, I hold the market on self blame and regret. I have mentally beat myself over and over. Then when I found this site, I discovered there are others who had done the same thing. They told me I had to forgive myself so I could go forward and be there for my other kids and family. It really began to help me to realize I was not alone. I realized I was not perfect, and would have given my life for my daughter. If I had known how to be the perfect parent, I would have been. I had to forgive myself for not being the perfect parent and for being human. My daughter knew we loved her very much. I will see her again and for that realization, I take comfort.

You were doing the best for your daughter that you knew to do. You loved her and she knew it. I worked in Special Education for almost 5 years and I loved Downs Syndrome children. They are some of the sweetest, loving children. One student in particular, who was Down Syndrome, I became very attached to. This student was very loving and tugged at my heart strings. She reminded me of my daughter, even though my daughter was developmentally normal. This student was stubborn, as are many Down Syndrome children, which was why she reminded me of my daughter when she was younger. I developed an emotional attachment to that child That I felt was a gift from God. She gave me joy when I was in great pain in the beginning after my daughter's death. I taught her to read and working with that student was my escape from my pain. I truly know how special those type of children can be. Very, very special.

I am so very sorry for the loss of your precious daughter. You sound like a wonderful dad who was deeply committed to her. It is okay to forgive yourself and realize it was not anything you did,or didn't do. You did the best you could as a dad. Take care of yourself and love your family and take comfort that you will see your precious little girl again.Maddy

[Andrew.miller8]

Robyn,

Thank you so much for your post. But I have a few questions. Are you saying that Perri's doctors screwed up -- that would add another level of anger to my grief. I have a question that I want to ask her doctors. Did they discuss her case every morning after the fellows spoke with me and told me it was ok to raise the oxygen? A good friend who was the chief of urology at a major hospital says they must have. I am not so sure. What do you think? She was at Children's Hospital of Philadelphia -- supposedly one of the best hospitals in the country. Also another doctor friend told me that even if we had taken her in to be seen at the clinic earlier the antibiotics might not have cured he pneumonia - so that is a reason I should not beat myself up. I cannot help thinking about all the things that went wrong and how Perri was always let down by the odds. The odds of contracting leukemia are so low. She had a predisposition to it having Down syndrome yet still they were low. Then went she went into remission early the doctors said she had an 80 -90 percent chance of survival -- something we took great comfort in and even lead us to believe she would never die because the odds were so good. Then fate was cruel and she was one of the 20 or 10 percent who relapsed. The odds then let us down consistently after that. She was an unusual case who got pneumonia at her stage of recovery. Then she had a 70 percent chance of survival with the ARDS. But she always got screwed by the odds - the were in her favor but then they let us down. Since you are a doctor I would appreciate your thoughts on this.

[Andrew.miller8]

Andrew,Believe me, I hold the market on self blame and regret. I have mentally beat myself over and over. Then when I found this site, I discovered there are others who had done the same thing. They told me I had to forgive myself so I could go forward and be there for my other kids and family. It really began to help me to realize I was not alone. I realized I was not perfect, and would have given my life for my daughter. If I had known how to be the perfect parent, I would have been. I had to forgive myself for not being the perfect parent and for being human. My daughter knew we loved her very much. I will see her again and for that realization, I take comfort.

You were doing the best for your daughter that you knew to do. You loved her and she knew it. I worked in Special Education for almost 5 years and I loved Downs Syndrome children. They are some of the sweetest, loving children. One student in particular, who was Down Syndrome, I became very attached to. This student was very loving and tugged at my heart strings. She reminded me of my daughter, even though my daughter was developmentally normal. This student was stubborn, as are many Down Syndrome children, which was why she reminded me of my daughter when she was younger. I developed an emotional attachment to that child That I felt was a gift from God. She gave me joy when I was in great pain in the beginning after my daughter's death. I taught her to read and working with that student was my escape from my pain. I truly know how special those type of children can be. Very, very special.

I am so very sorry for the loss of your precious daughter. You sound like a wonderful dad who was deeply committed to her. It is okay to forgive yourself and realize it was not anything you did,or didn't do. You did the best you could as a dad. Take care of yourself and love your family and take comfort that you will see your precious little girl again.Maddy

[Andrew.miller8]

Andrew,Believe me, I hold the market on self blame and regret. I have mentally beat myself over and over. Then when I found this site, I discovered there are others who had done the same thing. They told me I had to forgive myself so I could go forward and be there for my other kids and family. It really began to help me to realize I was not alone. I realized I was not perfect, and would have given my life for my daughter. If I had known how to be the perfect parent, I would have been. I had to forgive myself for not being the perfect parent and for being human. My daughter knew we loved her very much. I will see her again and for that realization, I take comfort.

You were doing the best for your daughter that you knew to do. You loved her and she knew it. I worked in Special Education for almost 5 years and I loved Downs Syndrome children. They are some of the sweetest, loving children. One student in particular, who was Down Syndrome, I became very attached to. This student was very loving and tugged at my heart strings. She reminded me of my daughter, even though my daughter was developmentally normal. This student was stubborn, as are many Down Syndrome children, which was why she reminded me of my daughter when she was younger. I developed an emotional attachment to that child That I felt was a gift from God. She gave me joy when I was in great pain in the beginning after my daughter's death. I taught her to read and working with that student was my escape from my pain. I truly know how special those type of children can be. Very, very special.

I am so very sorry for the loss of your precious daughter. You sound like a wonderful dad who was deeply committed to her. It is okay to forgive yourself and realize it was not anything you did,or didn't do. You did the best you could as a dad. Take care of yourself and love your family and take comfort that you will see your precious little girl again.Maddy

Thank you Maddy for your beautiful words of comfort.

[robyn]

Robyn,

Thank you so much for your post. But I have a few questions. Are you saying that Perri's doctors screwed up -- that would add another level of anger to my grief. I have a question that I want to ask her doctors. Did they discuss her case every morning after the fellows spoke with me and told me it was ok to raise the oxygen? A good friend who was the chief of urology at a major hospital says they must have. I am not so sure. What do you think? She was at Children's Hospital of Philadelphia -- supposedly one of the best hospitals in the country. Also another doctor friend told me that even if we had taken her in to be seen at the clinic earlier the antibiotics might not have cured he pneumonia - so that is a reason I should not beat myself up. I cannot help thinking about all the things that went wrong and how Perri was always let down by the odds. The odds of contracting leukemia are so low. She had a predisposition to it having Down syndrome yet still they were low. Then went she went into remission early the doctors said she had an 80 -90 percent chance of survival -- something we took great comfort in and even lead us to believe she would never die because the odds were so good. Then fate was cruel and she was one of the 20 or 10 percent who relapsed. The odds then let us down consistently after that. She was an unusual case who got pneumonia at her stage of recovery. Then she had a 70 percent chance of survival with the ARDS. But she always got screwed by the odds - the were in her favor but then they let us down. Since you are a doctor I would appreciate your thoughts on this.

Andrew,

No no no- I am NOT a doctor. I was a respiratory therapist. I cannot, in fact or in conscience, say what I think happened with any certainty, other than what I know from my experience. As a therapist, it is easy for me to say that I would have seen Perri's physical limitations (being bed-bound) as an approaching "perfect storm", or perhaps, what I might have done. But I wasn't there and I don't know her case. I have a, kind of, "built in" skepticism of medical specialists, having engaged in quite a few "clashes" over the years I was in the field. But that does NOT mean I am, in any way, qualified to question their decisions.

WHAT I WILL say is THIS: you could not have foreseen it, You could not have known, IT IS NOT YOUR FAULT. Will you still feel guilt? Does every parent who lost a child feel it? Absolutely. I am a new kind of "expert" now (and one I wish I weren't), and I CAN say this with certainty- Perri doesn't remember or care about the times you might have goofed up. All she is remembering- and wishing YOU would, too- are the good times, when you made her laugh, kissed her good night, and told her how much you loved her. I had my beautiful girl for just 33 years, but now all I can feel is gratitude for the time God gave me with her. Andrew, think of all the good Perri left with you. THAT is what is important.

We can't know God's plans, and all we know is this limited and painful life. So we hold on to it with a drowning man's grip. We rage around, break things and barely survive in our pain. But there is so much more. God waits for us to come to our senses and realize that the only peace we can ever have is in Him. Our precious children have only gone before us and we will be with them again one day. All He is waiting for is for us to realize this truth. God is greater than any pain we can experience, and watched HIS Son die in the most awful way possible.

Being kinder to yourself will take work Andrew, but you deserve it.

Robyn

[aim630]

Andrew-I am so sorry for the loss of your daughter Perri. My 23 yr old daughter Ashley died about the same time, 2-9-10. She had H1N1 the previous fall, but seemed to recover. In mid NOvember 2009, she was sick again. I took her to the doctor and ER and they sent her home saying it was a virus. They finally admitted her and said she had double pneumonia. they put her on a respirator, and into a medically induced coma. She also had mono (for the 2nd time in her life, which is rare). The moved her out of the ICU 3 wks later. The very next day her fever spiked to 106. She had ventilator acquired pneumonia. Her lung collapsed, and they didn't know if she would pull through,but she did. In early Jan 2010, they moved her back out of ICU. Her kidneys had failed due to the strong antibiotics, and she was on dialysis. They started functioning again, and they took her off dialysis. They were getting her to sit up, and were weaning her off the ventilator, but she developed a blood clot. On 2-9, they clled me to bring her a slushy, her first food in 3 months. when I got there they wouldn't let her have it, her heart rate was too high. I asked if it was the blood clot causing that, and they said no. Her heart eventually stoppped, and they couldn't restart it. I feel guilty for not moving her to the Cleveland Clinic, maybe they would have realized what was going on sooner. Or maybe the first time I took her to the ER they would have realized she had pneumonia, it wouldn't have got so bad.

I understand the guilt. I have an 18 yr old who is in college, I try to stay positive for her. She lost her big sister, I don't want her to lose me, although she lost the "me" that was. Now I feel like I can't fully enjoy anything. I exist, I don't really live. The 2 yr anniversary was really hard. I hope you are able to find some comfort in your other children, and try not to let the guilt eat you up. Any of us would have given our own lives, if we could have saved our children.

Please tell us more about Perri when you are able. Most of us are the Loss of Adult child website, regardless of the age of our angels.

Amy/Ashley's mom

[Andrew.miller8]

Andrew,Believe me, I hold the market on self blame and regret. I have mentally beat myself over and over. Then when I found this site, I discovered there are others who had done the same thing. They told me I had to forgive myself so I could go forward and be there for my other kids and family. It really began to help me to realize I was not alone. I realized I was not perfect, and would have given my life for my daughter. If I had known how to be the perfect parent, I would have been. I had to forgive myself for not being the perfect parent and for being human. My daughter knew we loved her very much. I will see her again and for that realization, I take comfort.

You were doing the best for your daughter that you knew to do. You loved her and she knew it. I worked in Special Education for almost 5 years and I loved Downs Syndrome children. They are some of the sweetest, loving children. One student in particular, who was Down Syndrome, I became very attached to. This student was very loving and tugged at my heart strings. She reminded me of my daughter, even though my daughter was developmentally normal. This student was stubborn, as are many Down Syndrome children, which was why she reminded me of my daughter when she was younger. I developed an emotional attachment to that child That I felt was a gift from God. She gave me joy when I was in great pain in the beginning after my daughter's death. I taught her to read and working with that student was my escape from my pain. I truly know how special those type of children can be. Very, very special.

I am so very sorry for the loss of your precious daughter. You sound like a wonderful dad who was deeply committed to her. It is okay to forgive yourself and realize it was not anything you did,or didn't do. You did the best you could as a dad. Take care of yourself and love your family and take comfort that you will see your precious little girl again.Maddy

[Andrew.miller8]

Ashley,

You said you wanted to know more about Perri. I gave a talk about her when we had the unveiling of her burial marker. This is a Jewish tradition. Our pain is all-encompassing so I want to leave that behind as much as possible and share with you some of our happy memories of Perri. Some that show her joy in life, and some that show how she dealt with the treatment for her disease both before and after her relapse.

First, I have to say something about the way in which Perri withstood pain. From the time that she went into remission in September 2005 to the time that she relapsed she had to go to the oncology clinic every week to have her blood tested for any signs of a relapse or other problems and to receive chemotherapy during certain weeks.

First this meant that a nurse would jab her with a needle to draw blood. Perri hated this and we had to hold her down on the padded table in the exam room. She would cry and scream.

Perri had a port under the skin of her chest which was invisible. But when she needed chemotherapy, the nurses had to access the port by placing a three inch needle into it. They told us it should not hurt too much because the needle was going into the port. Nevertheless, sticking her with the needle to access her port was as traumatic as drawing blood. Again we would have to hold her down on the padded table and she would writhe and cry.

But when these procedures were over Perri would invariably pop-up and say “thank you” to the nurse or technician who had just caused her so much emotional trauma.

She also did not like being examined by her doctors – who had to feel her liver and get her to lift up her shirt to make sure that her port was ok. Perri hated this. But after the exam was finished, again she would chime up – “thank you doctor Reilly” or “thank you nurse.”

Perri’s spirit was indomitable. Indomitable is a word that comes from latin and means impossible to defeat or subdue. And that is what Perri was. Pneumonia might have carried her off in the end, but her elan, her joy, her kindness to others, and her courage were never defeated or subdued. And the trips to the clinic each week proved this.

Perri was not perfect. She got frustrated like everyone else. She had tantrums when she could not get what she wanted. But when she was happy she made everyone around her happy.

Perri never lost her sense of humor even after she relapsed and had to stay in the hospital for about a month, enduring intensive chemotherapy as the doctors tried to get her back into remission.

Back at home, one of her favorite things was to joke about mustaches. She would hold a pen under her nose like a pretend mustache and show it off to everyone. We have picture of her in which she actually took a marker and painted a green mustache on her upper lip.

Even after she relapsed and her face was swollen with steroids she kept her sense of humor. She would play with a small guitar that we had bought her – with plans that she would take lessons. Joking around with the guitar she would dance and sing. I still remember one evening when she sat down on the couch flanked on either side by her cousin from Israel and her sister, Morgan. They had a great time making up songs and laughing.

Perri loved going with us to Franklin Park in downtown Philadelphia. There she would ride the Merry-Go-Round, not stopping until she had taken three or four rides.

Then we would head over to the miniature golf course. Perri loved the second hole because when you stepped up to the second hole rock and roll music by the Philadelphia Sound artists would start to play. Hearing “Ain’t No Stopping us Now” or “Love Train” Perri of course would drop her club and start to dance. If there was no one behind us she would get the music to play three or four times and miniature golf was forgotten for a while. By the way Perri was a great golfer – she scored more holes in one than I ever did.

In general she was a very talented and fearless athlete. The first time that I took her to the Belmont Hills pool near our house she ran right for the water slide and before I could catch her she had cut in front of the line and climbed up the stairs. But she could not swim. So I jumped into the pool to bring her up when she came out. And she came out laughing – not scarred one bit. In fact, she wanted to go back for a second time, but I had to stop her because the life guards were not going to let me keeping jumping in the water to save her when she came down.

We did get to go down another waterslide when we went to Disney World on a trip sponsored by the Make a Wish Foundation. At Disney World Perri proved that she was fearless again. We went on the Frontier land rollercoaster about five times.

One day we took a break from Disney World and went to Universal Studios. There Perri got to have her picture taken with Shrek and Fiona – her two favorite movie characters from the time the first Shrek movie came out. We also went to an outdoor performance by two singer/actors dressed up like the Blues Brothers. Perri went right in front of the crowd and of course began dancing to the music. To watch her have fun, was the best thing in our lives.

Perri as I mentioned before was a talented athelete. When we were in our house for the first fall in Bala Cynwyd, I signed her up for the Lower Merion Soccer Club program. There was a special needs program but I knew that Perri could play on a regular team. She could dribble the ball and shoot very well. Eventually she lost interest in the games, but she had all of the necessary skills.

Perri loved the beach. We went down to Loveladies, NJ for a vacation only a few weeks before she was diagnosed with leukemia. She ran up and down the beach chased by our dog Dogo. Then she would get up and chase Dogo down the beach. Every few minutes she would fling herself down on the sand and hold up her head with her hands. I still remember that day like it was yesterday.

Perri loved everything about pirates. We visited the ships moored at Penn’s Landing along the Delaware River many weekends when we lived in Society Hill. We visited the Mosholu, the USS Becuna (a submarine) and the Olympia – the famous battle cruiser from the Spanish American war. But for her all of these ships were “pirate ships.”

I read to her many nights wonderfully illustrated books entitled How I Became A Pirate and Pirates Don’t Change Diapers. At the end of How I became A pirate, the boy’s adventure with the pirates is finished. He thinks about how they might come back again one day, but then on the last page he says, “but not today, I have soccer practice.” Perri had that last page memorized.

At home we played pirates in the basement. We had two pirate swords made out of fabric. Either Perri or I would say “en garde” and we would start sword fighting. Perri would drop her sword, pretending that I had knocked it out of her hand and then I would chase her around the basement and catch her. Then it was my role to stick her with the sword between her arms and she would fall to the ground as if mortally wounded. Then we would start sword fighting again and now it was my turn to have the sword knocked from my hand and then be chased by Perri around the room. Perri thought of this game by herself and I could not have improved upon it.

On Saturday’s I took Perri to swimming classes. She learned from an instructor who had experience with children with intellectual disabilities. The instructor was amazed by the progress that Perri made in learning to float and kick while holding a bar bell shaped floatation device.

Perri was supposed to continue swimming lessons at Friends Central Day Camp. We had everything prepared for her. We hired an aide for her. I remember filling out her daily schedules and making sure to put down down dancing and computers for the times that she could choose her own activities. But then Perri suffered her relapse and the Day camp was called off.

Perri loved computers. In the summer before her relapse I bought her her own desktop computer so she would stop using mine so much. She eventually put together quite a collection of games. Of course her favorite was Shrek the Third. We struggled through the difficult parts of the game together and sometimes she surmounted the obstacle to get to the next level and sometimes I did. But there was no need to help Perri in most places. She was a computer game expert.

On Sunday’s Perri went to Ballet practice. She was not ready for a typical class yet so she had one on one instruction with the Ballet teacher, Ms. Tatania. Perri wore a pink leotard and learned to stretch with the teacher on the floor. But what she like best was to run and skip around the room with Ms. Tatania to the sounds of her favorite music: Smash Mouth, and the soundtracks from the Shrek movies and Lilo and Stitch. Later Ms Tatania introduced scarves a hulahoop and other fun props. At the end of the class Perri was unfailingly polite – helping Ms Tatania put away all of the props in their closet.

Perri was a gourmet when it came to food. Her favorite meal was a French baguette, grilled lamb chops, and a salad topped with Balsamic Vinagrette. She could make the balsamic vinaigrette herself. She would climb up on the counter at our house in town. Take down all the ingredients and start to work. She knew how much oil and how much vinegar to mix in. Then she would add salt and pepper. She loved tomatoes and always asked to have plenty of tomatoes put in her salad. When the lettuce and tomatoes were finished she would drink the balsamic vinaigrette remaining in the bowl – but always in a lady like way.

Most of all Perri loved friends. She made many, many friends at the Cynwyd Elementary School where she attended First grade. At the start of each day she would board the bus and say hello to Ms Patty the driver. Her “boy friend” (a little boy she had befriended) would save her seat for her in the front row. Once she left the bus she would go through the school office on her way to class. She always stopped by to see the principal and her secretary. Going to class with her aide, Ms Kamin, she would say hello to everyone she met in the hallways. Ms. Kamin told us that she was amazed at how many names Perri knew.

After she died Ms Kamin said:

“I think about Perri all the time – running down the hall with glee. I never let anyone run in the hall except her. It just made her too darn happy.

I could go on and on with great memories of Perri but we would be here far into the night.

I do want to tell you about the last time I had the chance to actually communicate with Perri. As you know she came down with pneumonia after coming home from three months in the hospital for her bone marrow transplant. She was at home for about a month and steadily made progress with strengthening her legs and body which were deconditioned from staying in a hospital bed for almost three monthgs. She was also still recovering from a complication of her bone marrow transplant called Graft versus Host Disease.

The night before we took her to the hospital for the last time, she perked up the most we had yet to see since she came back from her bone marrow transplant. She began to show us her old pre-transplant self. After dinner, she made a cake with Fabiola – cracking the eggs into a bowl and mixing them into the flour. She then took spices from the spice cabinet and mixed those in. Fabiola put her cake in the oven and Perri was delighted. Next she wanted to make an omellete and did that by herself too. During this time, she began to walk around the kitchen with a slightly unsteady gate, but she walked more than she had since she had come home from the hospital. She seemed to be doing great and getting a lot of strength back.

Next we went upstairs and she wanted to play with the Wii again for the first time since her initial weeks in the hospital and we played Shrek the Third.

But things went downhill fast from there. She usually needed only a small amount of oxygen at night. And that night we called the doctors and told them that we could not keep her blood oxygenation levels up to their required settings without turning up her oxygen flow almost to its full capacity. The doctors told us that this was fine so long as she did not dip too low below the preset levels. Well she did not keep her levels up and the next morning we took her to the emergency room where she was put on 100 % oxygen from a mask.

She was admitted to the hospital and put on a ventilator. Arising from her pneumonia she had developed Acute Respiratory Disease Syndrome – a condition in which her lungs became inflamed and started to collapse in various areas. There was no treatment for this condition. The doctors said we could only hope that her body would succeed in fighting off the inflammation by its own defenses.

For several days she seemed to be making progress and the doctors started to wean her slowly off the ventilator. Then she would begin to deteriorate and the ventilator settings had to be raised again. This cycle happened twice.

Perri was given sedation to keep her comfortable, allow her to avoid the emotional trauma of the situation, and stop her from fighting the ventilator in a way that would not allow it to support her breathing. Aside from the sedation she could not talk to us because obviously she she had a breathing tube down her throat. She managed to communicate somewhat with us by gestures and shaking her head.

The last night before she died she was not so sedated and was watching television with us. A commercial came on for some science fiction type action figures. I asked her if she wanted them. She tried to talk but the tube stopped her from saying anything. But then she opened her eyes wide and nodded her head yes. She had the cutest way of nodding her head and I recognized it from the old days. So I ordered the toys then and there on my blackberry. Sadly the toys did not come to our house until after she was gone.

That night I grabbed a few hours of sleep on the couch in the room while Fabiola slept propped up on the foot of her bed. When I woke up Perri’s conditioin had plummeted and we were soon told she would not live. So our little “talk” about the action figures was the last time I communicated with Perri. I will never forget it.

Watching her die with a tube down her throat and not being able to talk to us was a cruel ending to the beautiful life of a little girl who surmounted so many challenges.

I would give anything to have Perri back and be able to hold her in my arms again, play pirates, and take her swimming. Instead, we only get to put flowers on a cold brass grave marker. There is nothing left of Perri here. Her spirit is gone from this place. It is simply a construction designed somehow to comfort us, but instead it only makes me want to flee.

To cheer us up we tell ourselves that we were blessed to have a daughter as wonderful as Perri for eight and one half years. The best years of our lives. But on the other hand, we only had eight years with her. It cuts both ways. Usually I dwell on the loss of her great potential and think 8 years was not enough.

[Kenn]

Hey Andrew, reading your memories of Perri really made me love her too. She is a special person, that is for sure. I pray that you hold on to hope that you will someday see her again. Regardless what you feel about religion, the fact that nothing can ever hurt her again should be of some comfort to you. My daughter went through a lot of pain and suffering too, and I love her enough to be comforted in knowing that she doesn't have to hurt anymore. Our children are in a better place, and the best we can do for them is hold tight to the good memories they left us. We will go on living, and to their honor, we will never forget. Just for the record, I love what a wonderful dad you are.

[shellyku]

Dear Andrew - I just read your post about your daughter Perri. My sincere condolences to you and yours.

She sounds like a beautiful, delightful child. I was so drawn to your post because my 29 year old daughter

died from leukemia as well. Even though our daughters were quite different in age, this disease does

not care. Sarah was a school teacher and at the beginning of the 2009 school year, she started to feel

flu-ish. I'm reminded of Amy's daughter who had H1N1, which is the first thing I thought Sarah could be

suffering from. After feeling worse after a few days, she was ordered by her doctor to have blood work done.

When they called her and told her to get to the emergency room after reading the blood work, I got scared.

That's when they gave her the diagnosis of leukemia. How did you learn of Perri's diagnosis? Sarah was

told she had to have a bone marrow transplant, but her sister was not a match, nor was there a match on

the international registry. They found a cord blood match but Sarah relapsed before it could be done. We

may have been right next to you at Penn while Perri was in CHOP. I HATE that this happened to our daughters,

one so young and one a bit older, but both with many years ahead of them. My Sarah met the man of her

dreams and married him in her hospital room 7 months before she died...his name is Andrew. My heart to you.

Shelly

[Andrew.miller8]

Dear Shelley,

We found out that Perri had leukemia when she was five years old. (She was in remission for three and one-half years.) One day she complained about her back and she was not feeling well - not eating. We took her to the pediatrician who must have spotted the Petechiae on her legs. She had us do a blood test but we were oblivious. We thought Perri just had a sun rash. It was a beautiful summer day. I was upstairs in our house in our twins nursery for some reason and got a call from Dr. Rubin. He was blunt and said Perri has leukemia. Bring her in to the emergency room right away. I collapsed and started crying very loud. My wife came up and we both cried. Then we took Perri to the ER. She stayed in the hospital for one month getting chemo. She went into remission by day 12 and so was given odds of 80-90 percent of surviving. We thought these odds were so good she would never have a problem again. But fate was cruel

[robyn]

Andrew,

I read your post about Perri and your wonderful memories of her. She sounds like she was a terrific kid! I can't help but think of how much fun she is having now! I just feel sad for those of us who are left behind, here.

I have a friend that I have had for a very long time. Our kids were all born around the same time. When our kids were little, I showed her little things to do when the kids had colds, flu, or an asthma attack. We talked about humidity, using the shower, how to sit them up and do deep breathing and coughing, and I taught her how to roll them over and do chest PT on them. I did it with my kids whenever they were sick (a little over-zealous!). We were living in FLA when she called me to tell me her son had leukemia, and there was not one damn thing I could say to her; not one thing I could say that would make it any better. From diagnosis until he went home was only 9 months. This woman, from that time on, dedicated herself to others in the same position. First, with the Make a Wish Foundation, and then with a group she helped start up in MA. She, now, has cancer, is on hospice care, and preparing to go home, too. She was one of the first to contact me after Chrissy left, and the first to pull me out of a big black hole and remind me of the hope in God. She reminded me that they see and hear us and are only a breath away. They want us to know they are OK, and they want us to be, too. All the tests and all the machines do not change God's plans, no matter what we want. His plans are better than ours and, like the psalmist says, one day in His court is better than a thousand days anywhere else!

Andrew, Chrissy has been gone barely 3 months, and in the beginning, I just couldn't see myself living the rest of my life without her. I begged to die, I had never experienced such pain. I wanted someone to blame. Now, I am grateful for the time I had her here, for everything I learned from her, and for all the good she left here with us. We may have to live out the rest of our days without our precious ones, but we WILL be with them again. We can know that with absolute assurance.

Robyn