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knowing carissa

Knowing Carissa
It was 7 years ago this week that I met her. She was a beautiful child. She had big blue eyes, blonde curls and a huge smile. When I met her she was laying in her crib watching Barney. She was just barely 17 months old. But from the moment Carissa and I met, I knew she was a special little kid. Little did I know that over the next 3 years this little girl would change my life.
carissa slide

Carissa, age 2

By the end of July 1996, just three weeks after I met her, Carissa was diagnosed with AML- a type of leukemia. By August, her blonde curls were gone. The little girl began losing weight and was hospitalized for weeks at a nearby children's hospital. Carissa's mom and I became good friends during this time. She was a young, single parent and didn't have any family support. It was just her and her baby. She was 70 miles from her friends… she was very alone. I used to drive up to the children's hospital to go visit her and bring her basic groceries, toiletries and stuff to do since I knew she was lonely. She had lost her job when her baby got sick since she had to stay with her child. She had no income. I tried to do what I could for her, but I was only a teen myself…

Carissa went into remission a few months later. Her parents had another baby in 1997 in hopes that the baby would be compatible with Carissa for a bone marrow transplant. Unfortunately, the baby wasn't a match, but her parents had the baby's cord blood saved incase it could be used later. Shortly after her brother was born, Carissa relapsed again with AML followed a few months later by a brain tumor. In June 1998 I made her an outfit with a matching hat. Carissa had just gotten out of the hospital after being diagnosed with a relapse of her AML (leukemia) and was once again on chemo. As I walked up to the door, I was greeted by a cheery little 3 year old. She was smiling from ear to ear as she was hanging out the door waiting for me to come up the steps. As I came up onto the porch, Carissa looked at me and said, "Don't mind me I'm having a bad hair day." I figured that it didn't seem to bother her much yet that she had no hair at all, but I pulled out the outfit and hat I made her. Carissa was ecstatic! She wore it for a week straight, refusing to take it off so her mother could wash it.

Carissa 6-98 lg

the outfit I made for Carissa

In July 1998 The Make-A-Wish Foundation sent Carissa and her parents to Disney World because the 3-year-old "wanted to meet Pooh bear". Before her trip I made her 2 more hats and another outfit to wear at Disney World. At the same time, they were able to find a compatible match for Carissa, so a Bone Marrow Transplant was scheduled for September 1998. The Children's Hospital near Carissa's home didn't have the facilities to do bone marrow transplants (BMTs), so Carissa and her mom packed their bags and went to an out of state hospital where they would spend the next 4 months. Children with BMTs are usually in strict isolation for the first 12+ months after their transplant, and if they are far away from home, they usually cannot go right home. They need to spend the first few months near the hospital. So Carissa and her mother spent those few months in a studio apartment at the local Ronald McDonald House designed for families of BMT patients.

After returning home things went okay for the first few months. But Easter weekend 1999 we found out that Carissa's AML had returned despite the BMT. At this point there was nothing more that the doctors could do. They gave her low-dose chemo again and regular blood transfusions to prolong her life as much as possible. Week after week I spent the night at her house staying up through the night with her so her mother could try to sleep. Carissa started to call me "Mom2." I guess that’s how it seemed to the little 4-year old- like she had 2 moms. We tried not to cry in front of her. To be honest in those 5 months I only remember crying once in front of her. The rest was done behind closed doors. We didn't want to upset her.
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Carissa- august '99- all dressed up 'pretty' for a trip to Walmart

There were many long nights. Nights where we didn't think she was going to make it until morning. Every other day we drove her an out and 15 minutes to the hospital for a blood transfusion. it was the only
thing keeping her alive and she knew it. she got Social security money and it was rightfully hers so her parents gave her the money to go where ever she wanted and to spend it how she wanted before she died. She didn't spend most of it on herself. She would buy things for others. I remember a day at Wal-Mart when
she saw an old lady and thought the lady looked 'sad' so she bought her 4 red roses. We were like 'okay
Carissa, if that's what you want to do then that’s fine.' she brought them to the lady. It was then we found out that the lady's husband had recently died... Carissa was good at picking up on people's emotions.
Often she bought toys for children she'd see in the store that Carissa thought 'might not have many at home.' She was very giving. I don't remember her ever to be selfish.

During our many trips to Walmart she started buying items like salt and pepper, mouthwash, toothbrushes, toothpaste, clothes that were much to big for her, tampons, pads, deodorant, tools, food- you name it she bought it. She'd bring it home and put it in her room and tell us not to touch it. It just sat there. One day at the end of the summer she bought a suitcase. It was practically the size of her. That night she started packing all those items she had been buying into the suitcase. It was then we realized what she was doing. She was packing to move to heaven. The bought all those things cuz she knew they were things you use when you get 'bigger.' She knew she would be going to heaven with 'God and the angels' and had asked us if there were stores in heaven and when we said we didn't think so that's probably when se decided to start her little shopping spree.

A week or so later I was playing Barbie's with her one night (at 3am). all the sudden she said we were going
to play heaven. I know how to play house, but I've never played 'heaven' so I asked her to show me how.
Carissa told me to get all the girl Barbie's and dress tem as pretty as I could. In the mean time she put a suit on Ken. She took the Barbie's from me and picked up a 'Kelly' doll. She explained 'Ken is God, and Barbie's are the angels. And Kelly is me. When I get to heaven the angels are going to meet me there. I'm going to have hair (she lost hers from Chemo) and I'm going to be able to walk again. The angels are going to take me for a walk on streets of gold and they are going to bring me to meet God. I'm going to give God a
big hug and ask him lots of Questions.' (Carissa actually had a list of questions to 'ask God' when she
got there).' Then her eyes started to fill with tears. it was the first time I had seen her cry over the
issue of heaven. She said, "you and mommy and daddy and baby Ryan (her brother) are going to be sad, but its okay. I'm not going to be sick there. Michael (her friend with cancer who had died 3 days prior) will be there to play with and I'm sure I will make some new friends. And the angels will take care of me." What could I say to that? Carissa just came and sat on my lap and cried herself to sleep.

A few days after, I said my last goodbye and left the state for college. Carissa called me every day. I'd talk to her family 3 times a day. 2 weeks later Carissa announced that she didn't want any more blood transfusions. she knew that without them she would die. we reminded her, and she told us 'I'm tired of traveling to the hospital. I just want to be at home and get stuff done. I don't want any more blood transfusions, but I'm not going to die yet. I have more stuff to do." she knew and we knew that without blood she would keep bleeding internally and would die within 3-4 days. A week went by. She was still hanging in there. About that time these 'friends' as she called them started coming for visits daily. She'd be sitting in the living room watching TV or playing computer games and start talking to these 'people.' She was the only one that saw them. She'd tell them what she wanted them to 'tell God.' She would hold conversations with them. But we only heard her side. Some days she'd cry, and keep telling the person she 'was okay.'

Nearly 3 weeks went by since her last transfusion. No one could understand why she was alive. She kept saying I'm not ready to go to heaven yet. Finally the day came when her 'friend' came for her next to last visit. Carissa talked to her. By that point her mom and the nurse that was staying (a family friend) with her since I left, realized it wasn't 'from the morphine' there was really someone visiting Carissa. You could feel it in the room. You could see it in Carissa's face. She was always calmer when this 'friend' was around. Carissa told the 'friend' "tell God I'll be ready in the morning. I've just gotta do a few things tonight." Shortly after Carissa called me to say goodbye. I knew it really was time. We had along chat. She reminded me of the many promises I made to her about what I would do when she died. She told me she loved me and then passed the phone to her mother. Her mother had nothing to say. Just that she would call me tomorrow.

The next morning, September 29, 1999 Carissa's 'friend' came for a final time. The bags she had packed full of supplies were nearby ready to go. Carissa gave each of her parents a hug. Kissed her baby brother. She said 'I love you mom and dad.' She took one last breath, and then closed her eyes. It was 8:46 that morning. I'm sure she got her hug from God and she's probably running around on the streets of gold, her blonde little curls bouncing in the breeze. She isn't in pain anymore. She's in a much better place.
carissa candy-lg
In Memory of Carissa
February 5, 1995 ~ September 29,1999

Facts about Childhood Cancer

More than 11,000 children and teenagers are diagnosed with cancer every year.

Leukemia is the most common childhood cancer, affecting more than 2,000 American young people each year.

More children die from cancer than from any other disease.

Fortunately, with medical advances, the cure rate for childhood cancer has improved dramatically. Now, 70% of children will survive the disease that used to be a death sentence.

One out of every 800 twenty-year-olds is now a survivor of cancer.
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