Kelli Carter
(1996-2006)
Memorial website in the memory of your loved one
This memorial website was created in the memory of our daughter, Kelli Carter who was born in Maryland on December 14, 1996 and passed away on May 15, 2006 at the age of 9. We will remember her forever.


December 14, 1996 - May 15, 2006 The day Kelli was born changed my life. It was December 14, 1996, and it would be 9 ½ years before I would truly understand how much.

Kelli had what we later came to learn was defined as Combined Variable Immune Deficiency (CVID). When she was a year old, like most 1 year olds, she received the chicken pox vaccine. Within 10 days, she developed a wicked case of chicken pox. Some of the spots were as big as dimes and most became infected (impetigo). She also developed pneumonia. After 3 trips to the emergency room over a two month period to treat pneumonia, Kelli’s doctors sent us to Johns Hopkins Hospital to test her for cystic fibrosis (CF). She had most of the classic symptoms. She really did look like a CF kid. She had been losing weight and she had tons of mucous in her lungs.

When the first sweat test came back negative, her doctor couldn’t believe it. He was in such disbelief that he ordered the test redone. However, midway through the second test, the doctor came in and said he knew it was going to be negative again because they received the results of the blood work they had ordered days before. Kelli was Immunoglobulin A (IgA) deficient. Some of the symptoms can be the same as CF but he told us it wasn’t that big of a deal. There wasn’t any treatment for IgA deficiency. She’d be the kid with lots of colds growing up, but, really, we would just treat the conditions she got as a result of being IgA deficient. So they sent us off to Mt.Washington Pediatric Hospital to finish Kelli’s recovery.

Five weeks later, we were still at Mt. Washington (which didn’t make me happy because I couldn’t stay with her. Every day I had to leave her there and come back early the next day. It was one of the hardest things I’d ever had to do). Seems Kelli’s lungs would not clear up and she continued to require oxygen. They did finally send us home with the oxygen but they continued to try to find the reason her lungs would not clear up. Finally, a doctor suggested a Ph probe to test for reflux, even though Kelli had been through many reflux-detecting tests. BINGO! Kelli didn’t just have a mild case of reflux, she refluxed at a constant rate. So her surgeon performed what is called a nissen fundoplication (basically they wrap the stomach around the esophagus to create a new one way valve into the stomach…the result is that Kelli could no longer throw up…which in many cases is a very good thing.

The results following the nissen were amazing! Almost immediately, Kelli’s lungs began to recover and within 2 months she was off the oxygen and she returned to her normal life…for about a year and a half.

At the end of 2000, Kelli started to get pneumonia’s again with no explanation. We went to her immunologist and he started running all the same tests again. T-cell function. IgG antibodies. Then in February 2001, when Kelli was admitted for another pneumonia, they decided to do a bone marrow aspiration. That’s when our worst fears were discovered. Kelli had leukemia. But doctors were optimistic. They told us that treatment had come a long way and that the majority of leukemias were successfully treated…and Kelli’s was the most treatable. She had acute lymphocytic leukemia (ALL).

The very next day (March 1, 2001), they inserted her infusaport and began her chemo. Because of her previous history, doctor’s had determined that Kelli should be on one of the more high risk protocols, so we were looking at about a year and a half of chemo. Interestingly enough, with the exception of the first month of chemo which is by far the most intense part of the protocol, Kelli did pretty well. There were a few bumps in the road (she had a terrible time with vincristine, causing bowel problems as well as causing her to lose her voice), but we rode them out and Kelli always did what the doctors told her to do and she always did it with a smile on her face.

Hopkins became “her” hospital. We spent so much time there that we knew the place like we had a map engraved in our brains. We knew all the shortcuts through the basement and it seemed the staff everywhere knew us only too well.

Towards the end of chemo in 2002, Kelli started kindergarten at Woodmont Academy. She also got to take her Make-A-Wish trip. Kelli’s 3 choices for her trip were to meet teen pop star Aaron Carter, go to France and cook with a famous chef, or ride horses. Kelli always loved music and, at the time, loved Radio Disney and Aaron Carter. So Make-A-Wish flew the family out to Michigan where we got to spend the day with Aaron Carter and then attend his concert. Aaron could not have been any nicer and Kelli had a fabulous time!

At the end of 2003, Kelli finished all of her chemo. Since it was also very close to her birthday, we really celebrated and happily began the transition to leading a somewhat normal life again. But three months later, in March 2004, Kelli’s lower left lung collapsed. So it was back to the pulmonologist (whom we hadn’t really had a need to see since the beginning of chemo!). There they started Kelli on a series of steroids and other inhalants used to treat cystic fibrosis hoping to open up the lung. She also started using the Vest (which is an airway clearance system). None of the medicines seemed to work, although she didn’t seem to get worse.

None of this stopped Kelli. That summer she got into cheerleading, ballet and riding horses. Three activities she had been waiting with anticipation to start. Even though broncoscopies had shown bacteria in her lungs, she kept doing her Vest and all the other medicines so she could continue in her activities. In fact, one day in 2004 she actually said to me following a bronchoscopy and while doing her Vest that she was "sacrificing so she wouldn't have to go without food again." They were learning about sacrifices at school and her procedure must have been delayed so that she had to go the whole day without eating. That same day, she also thanked me for sending her to Woodmont Academy.

At the end of 2004, Kelli started getting sick again. She was back to needing oxygen and she was getting weird infections. She hadn’t gained much weight over the years, which we had mostly attributed to chemo, but since finishing chemo she still wasn’t gaining weight…and her liver enzymes were elevated (but heck, with all the medicines she took, not too surprised!). So another bronchoscopy was done, as well as an endoscopy to check for celiacs disease. The broncoscopy led her pulmonologist to want to do a lung biopsy…not an insignificant procedure, but the bronchoscopies weren’t really coming up with any reason why she wasn’t responding to treatment. And the endoscopy definitely showed Kelli had celiacs disease…which would dramatically change Kelli’s diet.

Within a couple of months of going gluten free, Kelli started to fill out a little bit. Not much, but enough to make her look healthy. She was still the littlest kid in her class, but she was enjoying herself! Loved school! Loved cooking! Even enjoyed the challenges her new diet presented because it was new stuff to cook! She spent hours watching the food network and decided she absolutely KNEW that she wanted to be a chef when she grew up. Not only did she want to be a chef, but she wanted to open a restaurant where anyone with food allergies could go and enjoy a meal out at a restaurant without having to worry about cross contamination.

In March of 2005, the lung biopsy showed that Kelli had sarcoid-like granulomas on her lungs. These granulomas were pressing down on her airways and requiring her to use oxygen. So she was started on steroids…fairly high doses in order to shrink the granulomas. She also had a feeding tube inserted in an effort to help her gain more weight. This was really the first indication we had that her immune system never really recovered from chemo and that it was really getting out of whack.

With everything she had going on, Kelli still went to school regularly and kept up with her work, getting exceptional grades. Pushing her oxygen tank around school every day never deterred her.

With the high doses of steroids and her immune system being what it was, Kelli developed shingles. But we caught them fairly early and antivirals seemed to help. Her feeding tube was giving her fits and the site where it was inserted wasn’t healing well so summer 2005 was pretty tough…not to mention, she was mad she couldn’t participate in cheerleading or ride horses. She was constantly complaining the feeding tube hurt and she was getting fevers which we thought were related to the tube site possibly being infected. Nothing her GI doctor prescribed seemed to work…so I made them remove the tube in September. What a relief. But she continued to get intermittent fevers.

In November 2005, it was discovered in a routine eye exam that Kelli couldn’t see out of her left eye. A biopsy showed she had CMV retinitis. CMV is a virus most people apparently have been exposed to but only seems to bother those with weakened immune systems. This had us all extremely concerned. Another bronchoscopy was done which showed various fungal and viral infections were detected in her lungs. Another lung biopsy was ordered and it was the first time doctors mentioned possibly doing a bone marrow transplant.

This was also about the time her immunologist determined that Kelli’s antibody levels were either very low or nonexistent. He explained that she had Combined Variable Immune Deficiency (CVID)…he actually compared her to the “Bubble Boy” (who actually had a different, more severe, immune deficiency), saying his immune system didn’t function at all, whereas Kelli’s functioned at about 10 percent…so they started her on monthly IVIG treatments.

When the most recent lung biopsy came back showing that Kelli’s airways were starting to close up (pulmonary obliterans), there seemed to be no other choice but to do the BMT. Seems Kelli’s immune system was essentially attacking itself and that it would eventually spread to her other organs. The viral and fungal infections were causing too much damage to her lungs. Doctors believed that she was slowly dying and her best chance was to do the BMT. What could we say? We knew Ashley was a close match for Kelli and even though she wasn’t a perfect match, Ashley also carried the CMV antibodies. This was good for Kelli.

They always tell you the risks of doing these things, but Kelli had been through so much and we’d always beat whatever we had to deal with. Despite her physical ailments she was a lively, vibrant kid who was always quick with a smile. In fact, one day she told me she was the luckiest kid in the world because she had her friends and family, her dog Kodi and she went to Woodmont Academy. I never let myself believe that she wouldn’t make it through the BMT. Unfortunately, on May 15, 2006, just 4 days after the transplant, before the donated bone marrow even had a chance to graft and do its thing, Kelli passed into eternal life.

Sure, she was complicated medically, but Kelli never let that stop her. One of my biggest regrets is that there are people who will never know how smart she was, how spiritual she was, how strong she was. They won’t taste her cooking or hear her laugh. I could go on and on about all the great things Kelli brought to this world, but those that will never know her are the unfortunate ones. We who know are so lucky and I am blessed to be her mother.







Tributes and Condolences
bless you all   / Debra Mitchell (friend of her father )
You have been blessed with Kelli and she with you. My thoughts are with all of you. xo
The Bridge   / Kim Knight (Friend)
Jen and Bill Scott is a friend of mine who's son Evan died last year day after Thanksgiving of congenital heart defects.  He was not expected to live past his birth.  He was almost 8 when he passed.  Scott took to writing soon after E...  Continue >>
To KelKel's mom, from KelKel's mom   / Christy
I found your site while searching for any info. that might be "out there" about my own children.  I am fighting tears as I see another blond haired blue eyed freckle faced Kelly Carter (spelling different!) with a black and white ...  Continue >>
unaccidental lesson   / Kelli Lynn Carter (none)
I stumbled across Kelli's memorial site as I vainly searched my own name... I was intrigued so I clicked on the site... As I read her story I knew it hadn't been by accident that I found her memorial site... God knowing my trials led me here... I am...  Continue >>
Condolences  / Theresa Jenke (None)
I was just browsing and came across Kelli's Memory website and this is such a great tribute to her.  I wish I had known about this with my son.  I lost my only child back on December 28th 2008 to Hodgkins Lymphoma.  It has torn me apar...  Continue >>
Your beautiful Angel  / Shelbi A. Grieving Mom To (angel Ali )    Read >>
Thinking of you  / Shannon Kaminkow (nanny)    Read >>
Locks of love, from my side of the story  / Sadie     Read >>
Locks of Love  / Patti Hittel     Read >>
MY STRENGTH  / MY DADDY     Read >>
beautiful girl  / Margie Bayer (none)    Read >>
Dandelions In Heaven  / Mother's Day     Read >>
Our girls  / Elaine     Read >>
We share the same name  / Kelli Carter (same name )    Read >>
From one grieving parent to another  / Marty Young (None)    Read >>
More tributes and condolences...
Click here to pay tribute or offer your condolences
Her legacy
My Guardian Angel!  

My Guardian Angel!

You watch and protect me from above.
You give great joy and you're full of love.
I can't understand why you left that day,
But ever since I began to pray.
I pray for Mom and I pray for Dad,
I pray that things won't go more bad.
He had no right to take you from here.
Hey, do you remember, "I got your ear!"
You're my Guardian Angel, you protect me from fear.
I go to bed and begin to tear.
I think of you every second, every day, every night.
One time I nearly got into a fight.
But you stopped me from that,
You knew he was pretty fat.
But mostly because you're my Guardian Angel; you protect me like that.
Tell MeeMaw I miss her, tell Cosmo that too,
And tell the big man I said he better be lookin' out for you!
I hope you're happy there,
With your long lucious hair.
But we miss you down here.
Mommy breaks down to tears.
I guess you're not sick anymore.
You're no longer sore.
That's really good.
No longer will you live in that Baltimore 'hood.
Its really good to have a Guardian Angel like you.
Its your turn to be the one looked up to!
I miss you baby sis.
I wish I could give you one last kiss.
Your my Guardian Angel and you will be a really big miss!

--Ashley--

Road trip is help for Kelli's sake  
The Eldersburg Eagle


Road trip is help for Kelli's sake

04/26/06
By Heidi Schroeder



While she could, Kelli Carter loved cheering for the Sykesville Raiders cheerleading team.

Her father, Bill Carter, describes her as a bright girl and good student at Woodmont Academy in Cooksville. 

But Carter, 9, has spent the past seven years battling leukemia and a variety of immune system disorders, which have kept her from some of her favorite pasttimes.

This Saturday, co-owner Jim Zulick and the staff of Jimmy Ray'z restaurant in Eldersburg are calling together members of the motorcycle community for a benefit motorcycle ride for the Carter family.

Carter said he and Zulick have known each other for years and, knowing Kelli's struggles, Zulick said that he wanted to do something to help.

"(Kelli is) very excited about seeing all these bikes," Carter said.

The Benefit Bike Run will be held Saturday, April 29, beginning and ending at Jimmy Ray'z in Eldersburg's Princess Shopping Center on Liberty Road.

The ride will include stops at Woodstock Inn in Woodstock, Daniels in Elkridge, Full Moon in Reisterstown, Gold Deuce in Taneytown, J&P in Taylorsville, through New Windsor and back to Jimmy Ray'z for a free buffet.

Registration - a $30 minimum donation - is at Jimmy Ray'z at 10:30 a.m. Departure will follow at 11 a.m. Donations will also be accepted.

Carter said that over the seven years that Kelli has battled illness, they family has accrued some $1.6 million in medical costs that are covered by insurance.

However, Carter estimates that last year alone, the family spent $16,000 connected to Kelli's treatment for things not covered by insurance.

"I'll spend it 10 times over if it works," Carter said of his daughter's treatments.

The bike run is also significant for Kelli because it is the last weekend before she begins a three-month process associated with a bone marrow transplant.

Kelli's sister, Ashley, 13, will donate her bone marrow - but before the transplant, and for three months following the treatment, Kelli's immune system will be unstable.
As a result, she will be under quarantine or living near Johns Hopkins, where she is receiving treatment.

All that is in the weeks to come. But for Saturday, Bill, Kelli, Ashley and mom Jennifer are looking forward to seeing the bikes and thanking the riders.

Jimmy Ray'z staffers, too, are looking forward to the event.

"We're just trying to pull together and help out a family in the community," said Jimmy Ray'z manager, Hope Isaza. "We consider them family, because they're so close to us."

And in that family, Isaza complimented Kelli for being a fighter.

"It is for a really good cause and she's such a cool kid," Isaza said.

For additional information about this benefit, or to take part or make a donation, contact Jamie Beghtol at 410-781-7235, Zulick at 410-781-9324 or Jimmy Ray'z at 410-549-6000.
Family remembers 9-year-old girl as inspiring despite illness  
The Carroll County Times

Family remembers 9-year-old girl as inspiring despite illness


By Penny Riordan, Times Staff Writer
Thursday, May 18, 2006

Bill Carter remembered dropping off his 9-year-old daughter, Kelli, outside school and watching her slowly gather her book bag, lunchbox and oxygen tank and get out of the car.

She always did it by herself.

"She wouldn't let anybody help her," Bill said, as he looked through pictures of his daughter, who was always smiling. After years of tests, tubes and numerous hospital visits, the Eldersburg family said Kelli's spirit never once wavered despite having an immune system disorder and leukemia.

"That was the way she was. She would be like, 'This is part of me. This is what I have to do,'" he remembered her saying.

On Monday, Kelli Carter died at Johns Hopkins University Hospital after complications from a bone-marrow transplant.

The death came as a shock to the family, as they were holding on to hope despite her weakened immune system

She had just undergone a bone marrow transplant with her sister as donor and was talking about doing all the things she never could do.

Friends and neighbors had just organized a bike rally for Kelli, which was held at Jimmy Ray'z restaurant in Eldersburg on April 29. On May 4, she went into the hospital.

"We never thought she wasn't going to come home," Bill Carter said.

On April 29, Kelli was in awe of the 125 motorcyclists who showed up for the charity ride. Pictures were taken with her behind the wheel and riding across the parking lot gripping the throttle.

Jim Zulick, co-owner of Jimmy Ray'z, remembers Kelli was so happy that day.

"That was the first time I had seen her smile that much in a while," he said.

Kelli's parents learned something was wrong with her immune system when she was a year old and broke out with chickenpox after she had the vaccine. When she was 4 years old, she developed leukemia.

"She just had no ability to fight infections," her mother Jennifer said.

Doctors were hopeful that chemotherapy would cure her. A bone-marrow transplant was eventually considered as the next best option.

As the family worked through years of health ups and downs, it was always Kelli who had the strength to carry them through.

She would always tell her mother how lucky she was to have her friends and her family.

"I would come home tired, and she would say, 'I'll help you out.' I would think, 'No, I'm supposed to help you out,'" Jennifer said.

At Woodmont Academy in Cooksville, Kelli's classmates gave her colored ribbons to decorate her oxygen tank, which they nicknamed "Shelly."

Teachers would send homework to the hospital when she was there, and friends would call and visit regularly.

The hardest thing was for Kelli to miss out on other childhood things, but her family said she tried her best to be a part of as much as she could.

She would always want to attend every cheerleading, dance and sporting event that her older sister Ashley was a part of. The two were typical sisters who sometimes fought. But Kelli worshipped Ashley and looked up to her, her parents said.

"She never wanted to miss out," Jennifer said. "Ashley was her catalyst for things she couldn't do."

Her parents were also amazed at Kelli's hope for her own future. Her health complications called for a gluten-free diet and Kelli hoped one day to open a gluten-free restaurant.

For Christmas, she asked for a pink mixer. Her parents settled on a white one from KitchenAid.

"She would watch cooking shows all day. She would love to plan meals and think about what's for dinner," Jennifer said.

When things started going downhill at the hospital, Jennifer remembers Kelli telling her that she loved her.

Toward the end, she was holding her mother's hand and then abruptly let go, Jennifer Carter said.

"I think she was telling me that she could go."
The Most Beautiful Butterfly  
"Your job," said the Lord, "is to be the most beautiful butterfly this world has ever seen. Fly high and spread your colors over the earth."

"Easy," she replied.

"But wait, there's a catch, you'll have no wings."

"No wings?" she exclaimed. And after giving it a little thought and with a twinkle in her eye and determination in her heart, she proclaimed, "No problem!"

And it never was. Her spirit lifted her high and held her up. Her joy, love and courage exuded the most exquisite colors ever seen. When the winds presented her with obstacles, she was undaunted. She reached deep within herself and found strength to continue. When pain and suffering came her way, it didn't dull her colors. In fact, she grew brighter in the darkest of hours.

Anyone who came in contact with her, well their lives were never quite the same. If she could fly and illuminate without the benefit of wings, then what did they have to complain about? Their trials dimmed in comparison and they drew strength from the butterfly.

And when the Lord saw all the good that she had done and all the strength she shared willingly and the abundant love that surrounded her, he called her home. Upon entering His gate, the wings that she ALWAYS knew were there unfurled and, amid the songs of all the angels and saints, carried her into His kingdom forever.

-Patti Hittel-
Our Soldier  
Our Soldier

The bravest person I will ever meet
You did remarkable things that swept people off their feet
You fought through so much disease and pain
With all sorts of bad viruses running through your veins
You went through so much in just nine years
I can't believe it had to end with all these tears
Just last month my Dad was taking you for a ride around the parking lot
And you were doing puzzles like word searches and connect the dots
I just can't believe that you are really gone
I wish I would walk out the door and you would be standing there on the lawn
I know that wish will never come true
But I can't tell you how much everybody misses you
You have impacted lives of so many people around here
It is hard to lose someone so close and dear
You have touched so many people's hearts
But to see you leave us everyone fell apart
You are the bravest soldier of them all
It is so hard to see you fall
Heaven I am sure is waiting for you up there
A new little angel that they don't want to spare
One thing I know for a fact
You will never be forgotten, I can promise you that.

--Kayla Beghtol--
 
Kelli's Photo Album
XMAS 2003 Kelli Kodi
Jump To:
Go to Album >> Open full-screen Slideshow >>