My best friend, Lisa Cammilleri, passed away on April 2, 2004 of complications from the inherited blood disorder called Cooley's Anemia
. Every four weeks of her life, she had to get transfused, and every week, she received desferal treatments
. She had to endure all of this and more throughout her life just to live, but she kept a smile on her face and fought until the very end. That is one of the many reasons why we all loved her so much, and we miss her every day. Below is my journal of the last few weeks of her life.
On Easter Sunday, I decided to eat dinner alone at the Perkins
Lisa and I would go to every Sunday. My mother wanted to go with me, but I told her that I needed to be alone. When I got to the restaurant, I wondered if people could tell I had been crying for days, or if the servers that saw us every Sunday wondered where Lisa was. I was seated in a booth where we usually sat, and I ordered and ate my meal very slowly. At first I felt weak, and I thought that maybe coming to Perkins wasn't a good idea, but then I gradually started to feel stronger. I looked at the empty side of the booth where Lisa would have been sitting, and it seemed like she was with me in spirit. It was very hard to sit there alone and finish my meal, but I think it was one of the first of many steps to getting through her death.
After I left Perkins, I went to Lisa's grave. I looked up at the sun and stood there with my eyes closed for a long time. I could feel my tears start to dry and sting from the hot rays hitting my face, and then the wind would pick up and cut across my cheeks, and more tears would fall as I talked to her. It was very spiritual and surreal. I was there for two hours, but it seemed like only a few minutes.
Sometime during my visit, a middle-aged couple walked up and asked me if I wanted a wooden Easter egg to put on Lisa's grave. The woman said that her husband made the eggs for their daughter's grave and they wanted me to have one too. Her eyes were red and watery like mine, and she looked very lost and sad, but when she held out that wooden egg and smiled, it took some of the pain away.
Lisa's service was the most beautiful service I have ever seen. The church was full of people that Lisa touched throughout her life. The police department honored her with standing guards at the entrance of the church and wore black bands on their badges. The Mayor of Rochester and the Chief of Police also spoke at her funeral. The Rochester Police Department presented Lisa's mother with a plaque that will also hang on the 6th floor of the Police Department to honor Lisa. They played Lisa's favorite song, Angel, by Sarah McLachlan
. At the end of the service, everyone held onto a balloon and then we let them go all at once. On the way to the cemetary, police cars blocked all of the streets along the way, and the line was so long that from our limo at the front, we couldn't see the end of the line.
I had to ask Lisa for the strength to read the testimonial I had written the night before because at first I didn't think I would make it through. But I knew Lisa was there with me giving me strength, and this is what I said...
Lisa was my best friend for 9 years, and they were the most wonderful 9 years of my life.
Lisa loved hockey and baseball. She loved Rudolph the Red Nosed Reindeer and panda bears. She loved the Marx Brothers and Spiderman. Her favorite quote was "I'll dance with you 'till the cows come home. Better yet, I'll dance with the cows 'till you come home," by Groucho Marx. Lisa really loved Christmas. She loved her high tech PDA and her dual trunking police scanner. When she bought the scanner, I had asked her what dual trunking was and she responded, "I don't know, but it sounds good." She loved her comic books and her Yankees blanket. But more than anything else in the world, Lisa loved all of the people in her life.
A few days before Lisa passed away, she said to her cousin Dawn and I, "When I get better, I want to spend more time with my family and friends. I want to go to the Fingerlakes Race Track or Disneyworld, and go to more parties."
I know that even though she can't be with us anymore, when we do see Lisa again, we will be spend that time with her. We will see that beautiful smile and hear that laughter again.
Lisa loved her family and friends so much, and her mother was the dearest person in her life. She told me all the time how much she loved her mother and how grateful she was for all that her mother and family did for Cooley's Anemia.
Lisa was the strongest person I have ever known with the most amazing, most loving soul. No matter how much pain she was in, no matter how much she struggled, she kept that sweet smile on her face that brightened everyone's day.
Lisa's laughter will forever be missed, but we will still hear it in our hearts. We will remember her smile when we need it to warm our souls. We will feel her sweet spirit around us when we need comfort.
Lisa, we love you so much. Thank you so much for blessing our lives. You will always be remembered.
Saying goodbye to Lisa at the cemetary was the hardest of all. I was the last to leave her coffin. I kept going back, thinking of more that I wanted to say to her. It was so hard to walk away.
I am grateful for a moment that Lisa and I shared on the day before she passed away. Lisa had asked everyone to leave her room except for me because she wanted me to help her with something. After I closed the curtain, she held out her arms and said, "I want a hug, Ang." We held onto each other so tight for a minute that I wish now could have been longer. I told her that everything would be ok, and we cried together. Then we shared some very special words between each other that I will never forget.
Thank you so much to my dear friends and mother who held me and helped me through this, and who will continue to help me through this. Without them, I don't know what I would do.
It will be a very long life without her, but she will always be in my heart. I can hear her saying in my head, "Come on Rohner. You can do it. I know you can."
We just learned that the Mayor of Rochester and the Chief of Police are attending Lisa's funeral, and the police department is honoring her.
The Mayor will also be changing the benefits for civilian employees of the Police Department so that they receive the same benefits as police officers. Once again, Lisa has helped other people just by being the person that she was.
We always knew she was loved dearly by many and that she touched many lives, but we never knew just how much until now.
It will be the most beautiful service I have ever seen, and I can't think of anyone else that deserves it more than our sweet Lisa.
Our sweet Lisa is with the Angels in Heaven now. Her heart stopped beating at 1:06AM on April 2, 2004. The doctors tried for 25 minutes to revive her, but she was already gone.
I arrived at the hospital a few minutes after her heart stopped beating. Andy and Pat had to hold me up as we walked to into her room because me knees were so weak. I could barely breathe. They lead me over to her bed so I could say goodbye.
My heart is hurting so much. There is no way to describe this pain. I feel like I just lost the other half of my soul. I don't know how I will go on without seeing her smile every day. It will be so hard.
We will all need to pray for each other now, so that we can be strong enough to go on, even when life seems impossible without her in it.
Lisa had a very rough night last night.
At 1AM, Lisa's mother noticed that she had lost a large amount of blood. (Since the clotting function of her liver isn't working properly, she can lose large amounts of blood if she isn't watched closely.) Her blood pressure dropped to 60, and she passed out. The nurses tried to stop the bleeding, and they had to order more units of blood for her.
Lisa is stable again right now, but she is being watched closely, and the liver transplant team is updated daily on her condition. She needs a liver ASAP. That is the only thing that will completely resolve her clotting problem and all of the other problems she has been having.
Lisa had not eaten since her birthday because of an obstruction in her stomach. They had to insert a tube through her nose last week, and she couldn't eat or drink anything. They just took the tube out this morning so she could start eating again.
When I saw Lisa today, she told me that she wished I was with her last night. I felt horrible just thinking about the fact that I wasn't there when she needed me most. So instead of going home when her mother stays, I am going to live at the hopsital until she is better. I made arrangements with friends of ours to watch our poodles and our townhouse so I won't have to worry about that. I am so grateful that we have such caring friends.
Please keep Lisa in your prayers.
Today is Lisa's birthday. She is 34 this year. I bought some streamers to decorate her room and told the nurses and friends so that we could have a birthday celebration at the hospital.
Lisa's whole body is swollen with water now, and she is still sleeping most of the time. When she talks it is hard to understand what she is saying because the pain meds slur her speech. I wake her up to feed her breakfast and lunch, but when she eats, her eyes are closed most of the time. I have to remind her to chew and swallow so she doesn't choke. So far, she has had a medium appetite. The docs are happy that she is eating, but we hope that she will keep eating more as the days progress.
Today Lisa had a stress test for her heart. They want to make sure her heart will be strong enough for the liver transplant. When the test began, she started to cry and reached out to me.
The doctors let me stand next to her and hold her hand during the test.
After the test was over, Lisa mumbled something and held up one of her arms. I leaned toward her stretcher to try and understand. She said that she needed a hug. Then she folded her arms around my shoulders and squeezed me so tight. We both started to cry, and I kept telling her that everything would be ok.
I thank my job so much for letting me work nights to be with Lisa during the day. I wouldn't trade anything for the moments that I spend trying to help Lisa through this. I know in my heart that she will make it through this, especially with the support of her family and friends. She really needs that.
Last week, Lisa tried to get out of bed on her own and fell, which made a fracture in her tailbone worse. Lisa has not been out of bed in about a week and has been sleeping a lot. We try to get her to eat full meals, but her appetite has been small because of the pain. Now Lisa is in a great deal of pain from the fall and cannot get comfortable. Her leg swelling has been better controlled, but her stomach is still very swollen and painful.
The liver transplant process with the 0+ blood type living donors has started, and people are getting tested. We are hoping that the transplant happens very soon.
Lisa is still in the hospital. She still cannot walk or stand, but when she feels ok, we take her outside for some fresh air in the wheelchair. She really enjoys that.
She will probably be in the hospital until her liver transplant or until they can control her swelling and pain, and when she can walk again. We are just taking one day at a time. Thanks to everyone who has been praying for her. Keep the prayers coming. Her father has been watching her from Heaven. He has already given us many signs that he is with her and helping her through this hard time. We all believe that she will get through this.
The past few days have been so hard. Lisa was admitted to the hospital on Friday because her swelling and pain was so bad that she could no longer even stand up. She has 14 pounds of water weight on her body from her stomach to her toes. I have never seen anyone in as much pain as she has been. They have her on high doses of the strongest pain meds at the hospital and she still feels pain.
The doctors also told us that Lisa will need a liver transplant as soon as possible, but there is a waiting list. Our hopes are high though, and we are thinking positive. Many people that have had liver transplants are doing fine today. Some of Lisa's family members and friends, including myself, are getting tested to see if one of us is a match to give her half of our liver.
If you would like to send Lisa a card or flowers, please send to:
Strong Memorial Hospital
ATTN: Lisa Cammilleri, 5-1600, Room 17B
601 Elmwood Ave.
Rochester, NY 14642
We need lots of prayers now. Please pray for Lisa.
Lisa is not feeling well at all today. She is more swollen than she ever has been. Her arms are so thin and frail, but her stomach and legs are very swollen. I usually rub her feet first and then her legs to push the water back up, and that visibly helps, but only for a little while.
I asked if she wanted to go to the ER for IV lasiks, but she wants to wait until she can see the doctor tomorrow to ask if he can give her a different lasik. The Spironolactone
diuretic doesn't seem to work, but her primary care doctor has been increasing her dose for a month now, hoping it will eventually kick in. She is on 100mg of Spironolactone per day, and has been on that dosage for a week, but she still isn't getting rid of the water. Her doctor says it takes 7 days to start working, but it has been over a month of increased doses and it has never worked.
In the midst of all of this, something wonderful has happened. The Chief of Police here in Rochester, NY was very upset when he found out that Lisa was ill and out of work without getting paid. Lisa has known the Chief since she started working at the Police Department as a young teenager. The Chief called Lisa at home and told her not to worry about a thing - that he was working at that very moment on making sure Lisa's paychecks would start again for 90 days. He also said that Lisa's job there would remain open for as long as it took to get better. He had the Union deliver a fruit basket to her and a Union member call her with her work and home number so that Lisa could call if she needed anything. Lisa's boss and coworkers also raised money for her, and more than 100 officers and civilian employees gave up some of their sick time for Lisa, which is how she is now able to get paid for the next 90 days.
I am so grateful for those from the Rochester Police Department that reached out to help, and for those of you that visit this site and that have helped with your kind words and donations. The donations are no longer necessary at this time because Lisa's pay will start again for 3 more months.
If wou wish to contribute to the greater cause, please visit the Cooley's Anemia Foundation
, which is the blood disorder that Lisa has that has caused Lisa to have all of these problems now. :o( I hope a cure is found for her and for other young adults and children very soon.
My best friend, Lisa Cammilleri, is very sick right now. Many of you that have visited my Sarah McLachlan site
for years may already know who she is by links from my site. She is an amazing person - sweet, funny, beautiful inside and out, and she has so much spirit regardless of what she has been through.
Lisa was born with the blood disorder, Thalassemia
, and because of this she has had to receive blood transfusioins every month since she was 2 years old. She also has had to hook herself up to a needle and pump every night since she was 16 to remove the excess iron from her body with a treatment called desferal. In addition to dealing with Thalassemia, she recently discovered that she has Diabetes, and she now has signs of Cirrhosis of the liver.
Ever since Christmas, her condition has been getting worse. Her body keeps swelling up with water, but the doctors don't know exactly what is causing it. She has been experiencing horrible cramps all over her body, 3 of her ribs broke recently because her bones are so brittle, and she has been getting fevers and nausea off and on. She can barely walk anymore because her legs and feet swell so badly. She has not been able to work since Christmas, and now she must go for disability.
Unfortunately, there is more bad news: Because Lisa worked as a civilian employee for the Rochester Police Department part-time for 10 years and full-time for only 4 years, she does not qualify to receive pay from medical leave or disability from them, and it takes about 3 - 5 months to go through the process of qualifying for disability from the government. So now on top of everything else, Lisa is worrying about how she will live with no income for the next 3-5 months.
After thinking for many hours about this, I decided to set up this page to ask for your help. I am hoping that maybe some of you will want to donate a small amount to help Lisa with her living expenses during the next few months. Even if you only want to donate $1 - every bit will help. But please only donate if you can and want to. I know that especially after the holidays, many of you are also struggling, so please do not donate unless you can and want to.
(Donations are no longer necessary. If you want to donate your money to a cause, please donate to the Cooley's Anemia Foundation
. This is the blood disorder that took Lisa's life, and that takes many other young lives around the world.)