| Ryan and I have three daughters; Charlotte, 15, Reese, 12 and Holland, 7. Our oldest, Charlotte, was born in Tampa, Fl in August of 2006. She has always been described as an outgoing, active, funny child and most people would never know she been dealing with a rare blood disorder almost her entire life. This is her story. A few months after her sister, Reese, was born in 2009, Charlotte came down with the stomach flu and could not hold anything down. It carried on into the night, and we worried she had become dehydrated. My husband took her to the hospital on March 11, 2010, where they gave her IV fluids during the night and ran some tests. That morning, I was home with Reese and was preparing to head into work when Ryan called and said the needed to send her in an ambulance to All Children’s in St Petersburg, FL. Her tests came back with low platelets and she needed further evaluation. The next few days were a blur, tests ran, platelets were still low. They told us they were testing for several conditions including Leukemia, ITP, and a few others, which caught us off guard. They gave her two rounds of IVIG to increase her platelets and her body responded. That’s when she was diagnosed with ITP. ITP is an autoimmune disease which causes her antibodies to attack her platelets. The normal range for platelets are 150k-400k and Chars were down to 4k. Their biggest concern for patients with ITP is internal bleeding. We were eventually released from the hospital after 4 days. The Hematologist said that about 85% of kids will out-grow this within 6 months. Over the next 6 months, she had several more rounds of IVIG, steroids and a lot of bloodwork. During that period of time, Ryan and I decided that we needed to move to his hometown of Greenville so we could have more of a family support system. Once we moved back, she initially became a patient at Greenville’s Children Hospital under the care of Dr Stroud and Dr Schmidt, two of the best Pediatric Hematology/Oncology doctors. Our first weekend in Greenville, and she had to be admitted again to the hospital for more rounds of IVIG, but I knew instantly moving to Greenville was a great decision. We had family, friends and the best nurses and doctors to care for our child. After 1 year of ITP, they diagnosed her with chronic ITP and the unknown kicked in. ITP has no treatment plan, every patient responds to treatments differently. Charlotte was a 4 year old that was living on IV treatments and steroids. Around age 5, Charlotte was referred by her Hematologist, Dr Anderson, to a trial study in Charlotte, NC. We met with the physician team and after much discussion, Ryan and I decided to move forward with the trial drug with the hope to give her an easier road. Nobody can prepare you for giving an unknown drug to your child, but we knew an oral medication would give her a break from all the “pokes”. The trial lasted 9 months requiring us to drive weekly to North Carolina. Her numbers began to rise and for the next 8 years with only a few random drops in platelet counts. The summer of her 8th grade year, her medicine stopped working which required her to be admitted to the hospital a few times. During that time, she missed a lot of school and then Covid hit. For her, this was a blessing to have some downtime with no sports and no in person school. Finally, they found a weekly shot of a different medication normalized her numbers. My husband administered shots weekly; both he and Charlotte dreaded shot day. This past month they switched her back to her original oral drug and we are hoping and praying that it will work again. I share Charlotte’s story because like so many, she looks like a healthy normal teen, but battles daily with her fight with ITP. Her skin is bruised easily when the numbers are low and her joints ache from long term steroids and medicine. Her life has been filled with lab appointments, bone marrow biopsies, CT Scans, MRIs, and IV treatments. Not only does she deal with ITP, but it takes a toll on all of us. As parents, we have had to make medical, school and sports decisions that are difficult. We spend hours fighting with insurance for approvals and scheduling appointments. Her sisters know that sometimes our focus has to be on Charlotte and they take it pretty well because they have seen how sick she can get. Charlotte is a rising Junior at St. Joseph’s, a HS/Club soccer player, enjoys playing basketball and swimming and loves hanging with her friends. This journey has molded her into a kind and compassionate young woman. She has lost friends that she knew from the clinic, which has made her aware that life gives everyone different paths. We are proud that she chooses to use her ITP to help others by being involved with the Ronald McDonald House, volunteering to help with events supporting Clements Kindness, and sharing her story to help raise money for different high school spirit weeks around the upstate. I have no idea if she will ever outgrow this, but I know that we will remain optimistic and continue to share our story to try to help others. | |
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