My husband Jeff, myself, our son Scott and Miranda had a million plans for the summer of 2008. That summer Miranda was 14. She was a strong, healthy young woman. She had a part time job, big plans for summer fun, was taking tennis lessons and was about to embark on the great adventure of high school. Throughout the summer she began struggling with fatigue. She was tested twice for mono, and both were negative. It was attributed to such a busy teenage summer life and it would probably pass. She had her sports physical before we were to leave on vacation and the doctor felt her glands and said he wanted us to come back and see him after vacation to get more testing because of the mono symptoms.
On Saturday, July 26, 2008, she fulfilled a dream – She saw the Jonas Brothers in concert! The very next morning, Sunday July 27th, we started the long drive to our vacation. She soon developed a nagging scratchy cough that wouldn’t go away, which she attributed to all the screaming at the concert. She had almost no voice. I wasn’t at the concert, but I can only imagine how she screamed. She really loved The Jonas Brothers.
On Monday morning July 28th she woke up to her glands in her neck swollen. We made a trip to an urgent care, and they tested again for strep and mono and gave her an antibiotic, inhaler and cough syrup. We then went on the next leg of our trip, Six Flags over St. Louis. She was uncomfortable all day but wanted to be there. She and her brother and her dad LOOOVVVEEE roller coasters. Mom holds everyone’s stuff. Then we drove to my aunt’s house and Friday morning August 1st she woke up to not only her glands in her neck being swollen but also her chest. It was very scary.
We took her to the emergency room there and a doctor at an emergency room, 1200 miles from home, found a mass in her chest and two masses on her thyroid and diagnosed her with possible lymphoma. Her doctor back home told us to keep her comfortable and stay for the reunion on Saturday August 2nd and then be on our way home to be at her doctors office at 7:30 Monday morning August 4th. At that appointment we learned that she didn’t have lymphoma … she had leukemia. It was the worst day of our lives up until that point. They made her an appointment at Penn State Hershey Children’s Hospital for Thursday August 7th. Monday, Tuesday and Wednesday were an almost unbearable wait. There was so much unknown and fear. It was so terrible. She just did her thing. Stayed in the air conditioning. watched movies, read books, drawing, talking to friends. She seemed calm.
She was a lot like her dad and if she was stressed, she didn’t show it. She seemed to just think she would go to Hershey. Get chemo. Her hair would fall out. She would be healed. And life would go on.
On August 7 she was diagnosed with High-Risk T-cell Acute Lymphoblastic Leukemia. The prognosis was good. As she rolled around the exam room on the wheeled stool, Dr. Freiberg and Dr. Barbour tried to prepare us for what treatment was going to be like. They talked about her hair falling out and she didn’t seem upset about that. She wasn’t happy about what all the steroids were going to do to her figure. What she got most upset about was when the nurse said that when her hair grew back it would most likely be very pretty and curly. She said she spends so much time straightening her hair that she didn’t want it curlier. Dr. Freiberg asked her if she understood what they were explaining. She said, “It is what it is so lets just do what we gotta do”.
She seemed to just trust that they were going to treat her, and it would be bad for a while and then she would be better and go on with life. We were assured that this was one of the childhood cancers that they had a pretty good hold on and even with her high-risk factors – way better than a lot of children. While her friends were preparing to start that great adventure of 9th grade, she started cancer treatment and began to fight for her life against cancer.
Almost from the first day of treatment her condition began an extreme downward spiral. She developed an infection in her PICC line, a temporary IV that stayed in her arm for ease of treatment, by the end of the first week so for the next 3 weeks she took all her chemo’s and all the numbers, blood tests, and everything by having IVs poked into her arm every time. But she just stuck out her arm and took it. She even had chemotherapy burn out a vein and through the skin of her arm. She was so happy when the day came for her to get her Medi-port surgery.
Exactly two weeks into treatment hair started falling out but she took it like a trooper. A few days later, while in the hospital, she asked the nurse, “can’t we just shave it off?” She cried, we cried, Patty the nurse cried. The steroids bloated her face and belly; you can imagine how a teen girl felt about that. But once again she took it like a champ.
Then, strangely, her platelet count was too low for a treatment, so she began to get behind in the protocol. She had one chemo that first month that had some one-in-a-million chance dangers. She was the one-in-a-million. She had a stroke. Then she suffered a toxicity to another chemo which caused her to lose the use of her foot, then her leg, and then she was unable to walk. Though she worked hard to get walking on her own again, she never did.
She continued to get sicker and sicker and was unable to keep platelets – they are cells in your blood that cause clotting and without them you can bleed too much. She was getting blood and platelet transfusions day after day after day. Platelet counts not being high enough and getting sicker and sicker caused her to get more and more behind in her treatment protocol.
She had been in the hospital almost all of August, September, October and November. We were moving into December, and she didn’t want to be in the hospital for Christmas. With a lot of planning and home health nurses she was able to come home for nine days before Christmas. It was a hard 9 days, but she was happy to be home, and we were happy she could be home for Christmas. The day after Christmas she wound up back in the hospital.
On January 2, 2009, we were told she had developed a rare blood disease. They said she would need a bone marrow transplant. But she was very sick. Very behind on treatment. We were told that it had a 1% survival rate and that was if she could get well enough for a bone marrow transplant. But she said even if it was a 1% chance that could be her. She was ready to fight.
She was getting blood and platelet transfusions every day and some days more. This caused her to be one huge bruise, and she couldn’t have any procedures done or she could have bled to death. The diseased cells ate all the good cells in her bone marrow but not the cancer cells, so the cancer cells were able to rage out of control and spread through her blood and body and other organs faster and much more aggressively than before.
Her doctors assembled a consulting team from the top 5 pediatric cancer hospitals in the country and even two researchers from outside the US. We were told that they were the best in the field with this. They came up with two long shots to try. Through these she became so severely immunosuppressed that she developed an infection in her blood that was antibiotic resistant. Her pneumonia took over both her lungs again, and the infection was causing her kidneys and her heart to fail. It also caused neurological damage; we have no idea how extensive or permanent this would have been. She also had dangerously low oxygen levels causing doctors and nurses racing to her bedside so many times.
The cancer was raging, and infection was raging. Her body was far too weak to fight anything at this point. On January 26th our beautiful strong smart smiling sweet little girl took a ride in her bed from 7West to the PICU. Due to her lungs and breathing they told us they were going to put her on a machine to rest her lungs and hopefully get her over this “hump”. Then that machine didn’t help enough, so she wound up on a ventilator. It was supposed to be resting her lungs. Just to get over the “hump.” As her kidneys were failing, they put her on dialysis, but her blood pressure went dangerously low, and the dialysis was not working.
The cancer ravaged her body and organs, her kidneys were failing, her heart was failing, she was bleeding internally and bleeding on her brain. Nothing could be stopped; it was all out of control. After only 5 months and 3 weeks, a mere 176 days, January 30, 2009, at 11:40am, at the age of 14 years, 8 months and 6 days old, Miranda passed away with us and her brother and many of those who loved her at her side.
Miranda was a “Four Diamonds Kid.” Her “adoptive” fraternity and sorority never left her side even though they were far away and they have never left ours, even to this day. I don’t think a day has gone by in the last ten years without some type of contact from her organizations. They brought smiles to her face during the hardest days of her life and have brought smiles to ours over all these years. They cried with us and laughed with us, honored her memory and remembered her fight. There is no amount of words that could fully thank these young people and even still to this day and we pray for years to come.
Our Family received a lot of help from Four Diamonds and were specifically touched by the staff that the fund provides to the children’s hospital. We were helped in so many ways. We spent every moment of every day focused on her and not on bills and a million other things that the staff did for us. The Four Diamonds Fund, the PSHCH pediatric oncologists, fellows, pediatric hematology/oncology nurses, social workers, music therapists, child life specialists, pediatric hem/onc clinic staff, and so many more who touched Mirandas life, our life, all because of THON and all of you.
21 days after our daughter became an angel, we went to THON. We know she was with us. Many people ask us how we could have done that. Why we did it. All we can say is that it felt like we needed to do it, and it felt like the BJC was one huge hug from thousands of people. Some years it has been painful to go but once we are there, we know we need to be with her orgs and share her story. We know we need to let other families that have gone through what we have know that parents can survive this and that our children are proud that we are using their stories to further the cause and one day bring an end to the terrible disease that took them from our arms.
Thank you so much for all you do. <>FOR THE KIDS <> FOR THE ANGELS<>
To ensure that THON is able to donate 96 cents of every dollar raised to Four Diamonds at Penn State Health Children’s Hospital, we heavily rely on donor support. These donations provide us the resources to create endless memories for our Four Diamonds families & foster a deep love & connection to our mission for our volunteers through Pre-THON Events, alternative fundraisers, & THON Weekend.
