Honored Kid

Charlotte E.

Age 12
Charlotte E. Kid Photo

Location

Columbus, WI, US

Diagnosis

Acute myeloid leukemia (AML)

Date of Diagnosis

September 2010

Status

In remission

Treated At

American Family Children's Hospital

Change your kid's logo

My Story

Starting in the middle of August 2010, our normally healthy 27 month old Charlotte started having episodes of uncontrollable crying. One minute she would be playing happily then drop her toys, look at us and cry. She was inconsolable. Her crying episodes usually lasted about an hour until she would just cry herself to sleep in our arms. After waking up an hour later, she would look at us with a huge smile and just say, “Hello Mommy” and resumed playing as if nothing had happened. We noticed that she also had a low grade temperature (99-100). Thinking these episodes may be a result of teething, we started giving her Tylenol often and that seemed to keep any crying episodes away. When we did not giver her Tylenol, the episodes came every 1-2 days. After about two weeks, we made an appointment with her pediatrician who found Charlotte's right ear looked infected and set us up with a 10 day course of antibiotics. She also recommended we give her Tylenol around the clock since it might relieve any pain the ear might be causing her. After 8 days we stopped the Tylenol and her episodes returned that morning. The pediatrician suggested we bring her back in for some blood work as Charlotte had some bruising on her legs. We had noticed them all summer but we figured it was because she was so active. A few more days passed before we were able to get a good blood sample (once her blood clotted before the lab received it, one day the doctor was out, and once the clinic was closed earlier than we expected), but in the morning of September 9th Amy was able to get her back for blood work. The doctor called back late that morning and said that we needed to get her to the hospital immediately because her platelet count was dangerously low. She assumed it was ITP, a low platelet condition that can happen to toddlers after an infection. She thought we might be in the hospital for a day or two while Charlotte received platelet transfusions. We packed for a short hospital say and got Charlotte to the hospital that afternoon. The doctors there also believed that her symptoms were very similar to those of ITP. The senior hematologist thought that her hemoglobin level looked a little low, which was not indicative of ITP, so he wanted to do a bone marrow biopsy in the morning to rule anything out. But he told us not to worry, he was pretty convinced that this was nothing serious. He returned in the morning and said that the news wasn’t good. He saw evidence of leukemia and we would be sent to American Family Children’s Hospital within the hour for diagnosis and treatment. Our world immediately stopped at that moment and I don't think there was a dry eye in the room. All the while Charlotte continued to run around the room playing in front of us.....how could this be possible? Later that morning, we arrived at American Family Children's Hospital and we met with the attending oncologist who reviewed Charlotte’s information. She felt quite confident that Charlotte had ALL, a much more common and treatable pediatric leukemia. The bone marrow biopsy slide from the first hospital was not very definitive so another biopsy was scheduled for the following morning when they would also install her port catheter for chemo and associated treatment medications. The next day, September 11th, 2010, we learned that Charlotte had the much more rare and aggressive AML, with an even more rare subtype, M7. The survival rates we had been looking forward to had dropped from 95% to around 50%. The necessary treatment protocol involved harsh chemotherapy with lengthy hospital stays of 3-5 weeks for the next 7-9 months. A stem cell transplant would be an option if a suitable match was found. At this time, Amy was 7 months pregnant with our second child. Because of the uncanny timing of Charlotte’s diagnosis and our due date, we had thoughts that this child would hold the key to Charlotte’s cure. If the new baby was a perfect match (25% chance), we could transplant the stem cells from the cord blood after a couple rounds of chemo and cut Charlotte's treatment time almost in half. Charlotte started her chemotherapy regimen that night and we spent the next four weeks in the hospital. Charlotte was an amazing patient. She insisted on being outside of her room as much as possible and was known by everyone as the little girl who walked the halls. Miles and miles were walked each inpatient stay as her energy stayed amazingly high. Another blow came when cytogenetic testing on Charlotte’s leukemia cells found complex abnormalities that kept her AML in the high risk category making a stem cell transplant an almost certainty to give her a chance of growing up. It just amazed us how our beautiful, happy, and still active little girl could have such a horrible illness inside of her. During Charlotte's second and third rounds of chemotherapy, our second child, Molly, was born on November 20th. We found out 10 days later that she was not an HLA match for Charlotte, and if a transplant was needed, an unrelated donor would need to be found in the NMDP database. The good news was that there were already a few potential donors located and two had been contacted to come in for further testing. Some patients never find a life-saving matched donor and we had more than one available. The bad news was that it would need to be from an unrelated donor which meant a much higher risk of very serious transplant related complications. Charlotte finished her third round of chemotherapy the second week of December. At that time we thought this was was her final round of chemotherapy. We planned on having a bone marrow transplant in early 2011. We found out over the next few weeks that both the first and second available donors had backed out after learning that our doctors wanted stem cells collected from the bone marrow, not their peripheral blood. This delayed the transplant as we needed to further test more donors (fortunately there were still some available) and have them pre-approve a bone marrow harvest to prevent future complications or delays. This meant that Charlotte would need to come in for a 4th round of chemo until the donor could be finalized and the transplant could be arranged. Round 4 of chemotherapy was Charlotte's easiest round and finished after the middle of January. We were able to spend the entire month of February out of the hospital, mentally preparing for Charlotte’s allogeneic bone marrow transplant scheduled for March 11, 2011. We knew this was going to be the hardest step in Charlotte's journey for all of us, so we made the hard decision to not bring Molly with us to the hospital. We left her in the very safe hands of her grandparents for the 6 weeks Charlotte was inpatient. Charlotte endured fevers, nausea, diarrhea,countless rashes, drug reactions, and acute graft vs host disease. But she again showed her incredible strength and took each day one at at time always smiling, laughing, and playing. She was released from the hospital at Day +28 and has been home ever since!!! She was on strict isolation restrictions and closely monitored with weekly blood draws for the first six months while her new donor immune system rebuilt itself. And after her one year transplant anniversary, we were able to meet Erin, Charlotte's wonderful donor and are happy to include her in our family! Today Charlotte is a happy, smart, caring, energetic 5 year old. She attends Kindergarten and becomes friends with everyone she meets. She is a fantastic big sister who loves to play with younger sister, Molly. Not a day goes by that she isn't coloring or playing puppies. And not a day goes by that we don't thank God, Charlotte's donor, Erin, and the doctors and nurses for saving Charlotte's life!!! Thank you for supporting Charlotte and the more than 300,000 kids worldwide who will be diagnosed with cancer this year. By sharing the gifts of your time, talent and money with the St. Baldrick’s Foundation, you're supporting research to give all kids with cancer a better chance for a cure.

The Childhood Cancer Ripple Effect

Help kids take childhood back from cancer — support lifesaving cancer research today.

Children who are fighting or have fought cancer inspire others to be part of the Foundation's mission — to support the most promising research to find cures for childhood cancers and give survivors long and healthy lives.

Photo submission policy

Please read the photo submission policy and accept below.

By submitting a photograph of yourself on www.StBaldricks.org, you agree to the following terms and conditions for submission of your photograph:

We strongly encourage all users to submit a before and after photo, so that donors and fellow participants can easily recognize and relate to one another.

Any photo containing cartoons, comics, celebrities, nudity, pornography, sexually explicit images or any copyrighted image (unless you own the copyright) is not permitted. This is because photos of celebrities and cartoon or comic images are generally copyrighted by the owner.

Uploading images of other people without their permission is also prohibited.

This photo submission policy applies to StBaldricks.org users. The St. Baldrick’s Foundation reserves the right to review all photos and to remove any photo for any reason at our sole discretion. If you see a photo on StBaldricks.org that you believe does not conform to this policy, email to WebQuestions@StBaldricks.org