Lizzie
My daughter, Elizabeth, passed away on Friday. Passed away......that makes it sound so kind and nice and easy.
She died. She was ravaged by terrible disease called Cystic Fibrosis which grabbed hold of her when she was born, almost took her when she was 5, and claimed her just 4 days after her 13 birthday.
To say that my daughter fought a valiant fight her entire life would be a understatement. While she never let the disease get her down, she lived her life in SPITE of, not measured by, her killer.
Okay, Liz touched a lot of people, yes. She was an "angel on earth", fine. She was her daddy's little girl, of course. But she was a fighter who never gave up.
Until about a week ago.
One week before Liz died she sat in her wheelchair, her body slowly deteriorating, and said, mostly to herself, "I'm giving up, I'm giving up." This wasn't a cry for help or a plea, it was a statement. Almost under her breath.
We wouldn't let her give up. I got in her face and made her continue to fight the fight. What father wouldn't? But Liz and I had the kind of relationship where I could get right in her face and tell her that "we are all fighting this battle with you and you have to lead us. If you give up, how are we going to fight? Are you listening to me????"
She said, softly and under her breath, "Yes, Father."
Elizabeth never called me "father" before. Or, if she did, I certainly don't remember it. Not even in jest do I remember her saying it.
I really wanted Elizabeth to turn 13. I don't know how much I wanted her to become a "teenager" for her as much as for me. I was obsessed with her future. I was absolutely certain that she would have that fight that teenagers do and tell her mother to fuck off, I'm gonna live with my dad, etc. And then I would get the good years. The car driving, boy crazy, beer drinking, rock concert years.
Also, because she lived with her mother, I never got Lizzie on her birthday. We would always celebrate it either before or after on a weekend, and it was good, but, being the sentimental schmo that I am, I wanted to celebrate her birthday ON her birthday and this hospital stay afforded me that.
We had such a nice party for her, I dressed in a suit, I kissed my beautiful daughter on her 13th birthday the next day and she started her decline. By the fourth day of her 13th year she was all but gone and went the next.
And Liz never knew how big the mountains were that I was moving for her.
All I ever wanted to do was step in front of that bullet for Lizzie. Every father wants to do that. Every father wants to step in front of the moving train, but when a disease like this enters it's final movement there are no more bullets to stand in front of.
But, last Saturday, the day before Lizzie's 13th party, I was given one more chance to stand in front of that bullet.
The day before we had been informed that we would probably be sent to Children's Hospital Los Angeles with Liz in transport to be evaluated for a lung transplant. I know that Liz was scared of that proposition from the very beginning that she heard those words. She couldn't fathom why a person would give a lung, much less any organ to someone they know or even don't know.
She was scared of what that procedure meant. And she really wanted to make sure that, if she went to CHLA for the "eval" that she would come back to Long Beach Memorial where she had a litany of friends; nurses, doctors, specialist, therapists.....
On Saturday morning I told my brother who lives in Chicago that our options were slim. If CHLA didn't take us, San Diego wouldn't either because their cut off age was 16. And Stanford had a policy that the patient has to be able to walk in under their own steam, which Liz was absolutely unable to do.
Then, as the gun was cocking and the bullet was being placed into the chamber, an amazing thing happened.
My brother's wife is a cousin of a Trustee of Stanford University, one of the hospitals that performs lung transplant operations. This Trustee just happened to be having dinner with my brother and his wife THAT NIGHT.
During this dinner the topic of Liz came up. Very quickly this man started to make some phone calls. The next day he went to Stanford, this 85 year old who cared and thought that, perhaps there was something he could do, even though he had no other business on the campus. He went to talk to the Chief Cardio-Thoracic Surgeon, and ask him to maybe do a little favor for Liz. This Doctor, let's call him Dr. R, spoke with my brother. I am flummoxed how Jon had that conversation. Dr. R isn't just any other doctor. He's a TRANSPLANT SURGEON. These men are gods that walk the earth. They take pieces of one body and put them in another and make those people whole again. And this Zeus of Lung Surgery called his colleague, Dr. S, now the chief lung surgeon at USC and CHLA and asked him to do a favor for the family member of a VIP. In R's words to my brother, "If S gets focused, things will start to happen".
That call from Dr. R to Dr. S happened on Tuesday. On Wednesday we were told that a bed would be ready for us at CHLA in the Pediatric ICU on 5 west. Lizzie's nurse was, in a word, in shock. Nobody gets that room, that bed, she said. She had worked there. She made it seem like that was Shangri-La for a person in Liz's situation. "Someone had to pull some strings to get that bed", the nurse had told me.
Mountains were rumbling.
Jonathan waited a day to keep Dr. R informed, there was no real new information, except that Liz's carbon dioxide levels were climbing and, as they did, she would begin to go to sleep, get numb, disoriented and eventually, we would have to intubate her and she could die.
On Thursday night we slept in the hospital lobby, my brother and me. He had come in that day. My mother was in a family room and periodically checked on Liz. At 6AM he called Dr. R and called every 10 minutes until 6:45 when he left a message, sure that Dr. R was in surgery at that point.
The message was all the latest vitals that Jon and I had ascertained from doctors the night before.
Within 2 hours Lizzie's doctor received a call from the transplant team that a bed was being made ready for her at PICU in CHLA that day instead of the following day.
She would be moved at 3.
Lizzie, her heart beating at the end at 184 beats a minute, her mother caressing her leg, her daddy talking to her and telling her to think about the place in our front yard that she used to lay down, under the Ficus tree, on the freshly cut grass, her Golden Retreiver Huck dancing around her, the ice cream trucks that run up and down the street, went into cardiac arrest.
Within 10 minutes she was dead.
She was going to be moved to the transplant team in one hour.
She didn't really want to go.
She had given up a week before already.
She was a teenager because her daddy wanted her to be a teenager.
She was with her Mommy and Daddy at her last minute the way she was the first minutes she breathed air into those lungs that would, one day, give themselves to a terrible disease.
I like to think that the Trustee, Dr. R, my brother, Dr. S all had something to do with getting her ready to go to CHLA.
I like to think that they gave me one last chance to step in front of the bullet.
And when that bullet was shot out of that gun......Lizzie pushed me aside and took the hit.
I miss my daughter every second of every moment of every day. And I know that, in time, I will be able to think of the times when she was alive and not these last few TV Movie weeks that she spent in the hospital.
But I got one more chance to step in front of that bullet, to stop that train, to fly around the Earth at superhuman speed and turn back time, it's just that Lizzie didn't want me to.
And my daughter, daddy's little girl, that princess in pink......when she made up her mind to do something, goddammit, she was going to do it.
So, she may have lost her fight with CF, because CF always wins, but, in the end, she won, because she did things the way she wanted to.
I will always love you, Elizabeth. You were my hero. My inspiration. My baby.
Amended May 31st.
I don't know if I will ever post to this blog again. I kind of want Elizabeth's final week to remain at the top.
But, I felt it important that I mention The Elizabeth Lulu Scholarship Foundation. At this time we are a non-profit corporation awaiting our Tax Exempt Status. Just about everybody we know has stepped up to help in some way and we are grateful. For more information on how you can be a part of this endeavor or to find out just why it is so important to me please email elizabethluluscholarship@gmail.com and go to www.lizzielulu.org.
Allen
She died. She was ravaged by terrible disease called Cystic Fibrosis which grabbed hold of her when she was born, almost took her when she was 5, and claimed her just 4 days after her 13 birthday.
To say that my daughter fought a valiant fight her entire life would be a understatement. While she never let the disease get her down, she lived her life in SPITE of, not measured by, her killer.
Okay, Liz touched a lot of people, yes. She was an "angel on earth", fine. She was her daddy's little girl, of course. But she was a fighter who never gave up.
Until about a week ago.
One week before Liz died she sat in her wheelchair, her body slowly deteriorating, and said, mostly to herself, "I'm giving up, I'm giving up." This wasn't a cry for help or a plea, it was a statement. Almost under her breath.
We wouldn't let her give up. I got in her face and made her continue to fight the fight. What father wouldn't? But Liz and I had the kind of relationship where I could get right in her face and tell her that "we are all fighting this battle with you and you have to lead us. If you give up, how are we going to fight? Are you listening to me????"
She said, softly and under her breath, "Yes, Father."
Elizabeth never called me "father" before. Or, if she did, I certainly don't remember it. Not even in jest do I remember her saying it.
I really wanted Elizabeth to turn 13. I don't know how much I wanted her to become a "teenager" for her as much as for me. I was obsessed with her future. I was absolutely certain that she would have that fight that teenagers do and tell her mother to fuck off, I'm gonna live with my dad, etc. And then I would get the good years. The car driving, boy crazy, beer drinking, rock concert years.
Also, because she lived with her mother, I never got Lizzie on her birthday. We would always celebrate it either before or after on a weekend, and it was good, but, being the sentimental schmo that I am, I wanted to celebrate her birthday ON her birthday and this hospital stay afforded me that.
We had such a nice party for her, I dressed in a suit, I kissed my beautiful daughter on her 13th birthday the next day and she started her decline. By the fourth day of her 13th year she was all but gone and went the next.
And Liz never knew how big the mountains were that I was moving for her.
All I ever wanted to do was step in front of that bullet for Lizzie. Every father wants to do that. Every father wants to step in front of the moving train, but when a disease like this enters it's final movement there are no more bullets to stand in front of.
But, last Saturday, the day before Lizzie's 13th party, I was given one more chance to stand in front of that bullet.
The day before we had been informed that we would probably be sent to Children's Hospital Los Angeles with Liz in transport to be evaluated for a lung transplant. I know that Liz was scared of that proposition from the very beginning that she heard those words. She couldn't fathom why a person would give a lung, much less any organ to someone they know or even don't know.
She was scared of what that procedure meant. And she really wanted to make sure that, if she went to CHLA for the "eval" that she would come back to Long Beach Memorial where she had a litany of friends; nurses, doctors, specialist, therapists.....
On Saturday morning I told my brother who lives in Chicago that our options were slim. If CHLA didn't take us, San Diego wouldn't either because their cut off age was 16. And Stanford had a policy that the patient has to be able to walk in under their own steam, which Liz was absolutely unable to do.
Then, as the gun was cocking and the bullet was being placed into the chamber, an amazing thing happened.
My brother's wife is a cousin of a Trustee of Stanford University, one of the hospitals that performs lung transplant operations. This Trustee just happened to be having dinner with my brother and his wife THAT NIGHT.
During this dinner the topic of Liz came up. Very quickly this man started to make some phone calls. The next day he went to Stanford, this 85 year old who cared and thought that, perhaps there was something he could do, even though he had no other business on the campus. He went to talk to the Chief Cardio-Thoracic Surgeon, and ask him to maybe do a little favor for Liz. This Doctor, let's call him Dr. R, spoke with my brother. I am flummoxed how Jon had that conversation. Dr. R isn't just any other doctor. He's a TRANSPLANT SURGEON. These men are gods that walk the earth. They take pieces of one body and put them in another and make those people whole again. And this Zeus of Lung Surgery called his colleague, Dr. S, now the chief lung surgeon at USC and CHLA and asked him to do a favor for the family member of a VIP. In R's words to my brother, "If S gets focused, things will start to happen".
That call from Dr. R to Dr. S happened on Tuesday. On Wednesday we were told that a bed would be ready for us at CHLA in the Pediatric ICU on 5 west. Lizzie's nurse was, in a word, in shock. Nobody gets that room, that bed, she said. She had worked there. She made it seem like that was Shangri-La for a person in Liz's situation. "Someone had to pull some strings to get that bed", the nurse had told me.
Mountains were rumbling.
Jonathan waited a day to keep Dr. R informed, there was no real new information, except that Liz's carbon dioxide levels were climbing and, as they did, she would begin to go to sleep, get numb, disoriented and eventually, we would have to intubate her and she could die.
On Thursday night we slept in the hospital lobby, my brother and me. He had come in that day. My mother was in a family room and periodically checked on Liz. At 6AM he called Dr. R and called every 10 minutes until 6:45 when he left a message, sure that Dr. R was in surgery at that point.
The message was all the latest vitals that Jon and I had ascertained from doctors the night before.
Within 2 hours Lizzie's doctor received a call from the transplant team that a bed was being made ready for her at PICU in CHLA that day instead of the following day.
She would be moved at 3.
Lizzie, her heart beating at the end at 184 beats a minute, her mother caressing her leg, her daddy talking to her and telling her to think about the place in our front yard that she used to lay down, under the Ficus tree, on the freshly cut grass, her Golden Retreiver Huck dancing around her, the ice cream trucks that run up and down the street, went into cardiac arrest.
Within 10 minutes she was dead.
She was going to be moved to the transplant team in one hour.
She didn't really want to go.
She had given up a week before already.
She was a teenager because her daddy wanted her to be a teenager.
She was with her Mommy and Daddy at her last minute the way she was the first minutes she breathed air into those lungs that would, one day, give themselves to a terrible disease.
I like to think that the Trustee, Dr. R, my brother, Dr. S all had something to do with getting her ready to go to CHLA.
I like to think that they gave me one last chance to step in front of the bullet.
And when that bullet was shot out of that gun......Lizzie pushed me aside and took the hit.
I miss my daughter every second of every moment of every day. And I know that, in time, I will be able to think of the times when she was alive and not these last few TV Movie weeks that she spent in the hospital.
But I got one more chance to step in front of that bullet, to stop that train, to fly around the Earth at superhuman speed and turn back time, it's just that Lizzie didn't want me to.
And my daughter, daddy's little girl, that princess in pink......when she made up her mind to do something, goddammit, she was going to do it.
So, she may have lost her fight with CF, because CF always wins, but, in the end, she won, because she did things the way she wanted to.
I will always love you, Elizabeth. You were my hero. My inspiration. My baby.
Amended May 31st.
I don't know if I will ever post to this blog again. I kind of want Elizabeth's final week to remain at the top.
But, I felt it important that I mention The Elizabeth Lulu Scholarship Foundation. At this time we are a non-profit corporation awaiting our Tax Exempt Status. Just about everybody we know has stepped up to help in some way and we are grateful. For more information on how you can be a part of this endeavor or to find out just why it is so important to me please email elizabethluluscholarship@gmail.com and go to www.lizzielulu.org.
Allen
posted by Allen Lulu | 8:08 AM
12 Comments:
Hi Allen. You don't know me, but I know a friend of yours. By coincidence I was one of the people who went on the house tour that your house was part of last year. I just want you to know how sad I am to hear about Lizzie. She was charming that day when we went through your house and my friend I was on the tour with and I were both really touched by her spirit. I thought you'd like to know that people you don't even know are saddened by this news. Lizzie touched people in many ways, obviously. I'm sending good thoughts your way. Take care.
Lizzie certainly touched many people, in many ways and through many mediums. As I packed up girl scout cookies to send to Kristen on Wednesday, I thought that perhaps Lizzie would be able to partake (Kristen had mentioned having to give Lizzie sugar-free peanut butter not so long ago). Saturday, I took my dog, Arturo to the park, found a nice shady tree and proceed to have a picnic. When it started to rain, I looked up and laughed at the sky.
P.S. I now have the girl scout cookie hook-up.
You don't know me. I have CF also and will someday have a tx by Dr. S at USC. I am so so sorry about your daughter. I know you will miss meeting the teenager you were so eager for her to be. But she must be watching you and thinking how much she loves you. You sound like a great dad.
If I hear your bad I will think of Elizabeth.
Carol Sweten
Allen,
I just wanted to tell you how sorry I am about Lizzie.
She posted to the MSN Lung Transplant Support group a few weeks ago. She was looking for information about
lung transplants. I want you to know that I have a group of people here in Atlanta that will be wearing pink of Friday in her honor. God bless you and God Bless Lizzie.
.. .. ...
nice blog
thanx for sharing
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