November 2009 was bringing to a close what had been a very difficult year. Both of my parents had passed away in March of 2009, and I was looking forward to 2010 as a fresh start. Little did I know that my world would be turned upside down in the blink of an eye.
My daughter Bobbi has always been very active - taekwondo, volleyball, softball and so on. Bruises were the norm for her and we didn't think twice about them.
In 2009, she was 15 and a sophomore in high school. She had been working out at our local YMCA and began to complain of "hearing herself breathe" and feeling lightheaded. Later that day she was horsing around with her younger brother and he kicked her in her shin, and within an hour she had a bruise that went from ankle to knee. The next day she was exhausted and suffering from a headache and stayed home from school. I thought it was the flu.
By day three, she was almost lethargic so we took her to her family doctor for to find out what was going on. After she had 15 tubes of blood drawn and a possible diagnosis of the parvo virus (there was another case in our very small city, same high school) we went home and I put her to bed with fluids and rest and thought, she would certainly come around in no time. Then it happened - the Doctor called. When your phone rings at 7:00pm and it's your doctor, you know this isn't a good call. Her platelet count was low, 11,000. We were to follow up the next AM with a hematologist.
On day four, my phone rang at 7:00am. Again, nothing good can come of this. The hematologist we were to see did not see pediatric patients and we were to contact Children's Hospital of Wisconsin for a pediatric hematologist. During the phone call, I mentioned the headache in passing and was told to take her to Children's Hospital IMMEDIATELY. She would need to have a CT scan done to look for blood clots.
We arrived at Children's Hospital that morning and it was a whirlwind of activity. Her platelet count had dropped to 8,000 and we were critical. I remember Bobbi commenting "I hope they keep me overnight so I can order room service." Little did she know she was going to be there for more than one night.
Multiple providers saw Bobbi, but once the hematology team arrived we knew we were in trouble. She had to be admitted, a central line had to be placed and plasmapheresis would be done. I'll never forget the fear I saw in my daughter’s eyes that evening and I knew there was nothing I could do to make this better. I had to sign a consent form allowing them to place a central line knowing that she could bleed out due to her critical platelet count.
After a month of inpatient plasmapheresis, she was released but had to do approximately two months of outpatient treatment. She was followed extensively due to her being a child and having the rare diagnosis of TTP. The Children's Hospital of Wisconsin is part of The Milwaukee County Medical Complex and the Medical College of Wisconsin, so we were lucky. We had the best of the best in our state treating our child. She was placed on the Hematology, Oncology, and Transplant floor of the hospital and at the end of it we were able to walk out with our child.
Fast forward to the present, July 23, 2014. Bobbi is currently an inpatient with a relapse of TTP. Bobbi began to complain of a very bad backache and just not feeling well. Though she was worried about her dark urine, she didn't seem overly concerned so I didn't ask her the question I always ask "Does it feel like it's back?" On Friday July 18, 2014, she sent me a text message telling me "I don't feel good". I changed my route and took her straight to the emergency department. After the emergency room doctor saw her and we advised him of her TTP, he told us he thought it was a kidney stone because of the back pain. I had to insist on him doing a CBC to check her counts. He came into the room and told us her count was 10,000. She was transferred to The Medical Complex and Froedtert Hospital and admitted for TTP. At that time, her count had been re-done and she was now down to less than 5,000.
After five days of plasmapheresis, her count was up to 130,000. We were heading in the right direction, but having been here before, and we know we will be here again, we were terrified. The ‘whys’ are too many to count and the sleepless nights are draining at the very least.
Half way through her treatment, she developed an allergy to a protein in the donor plasma. Anaphylactic shock set in and she was transferred to the ICU. After meeting with teams from the Blood Center of Wisconsin, the allergy team and the hematology team had no answers as to why...why was there a reaction and what were we going to do? Bobbi spent a total of 5 days in the ICU receiving Benadryl 13 hours, 6 hours and 1 hour prior to her treatments as well as prednisone, and an epi pen sat at the bedside. Thankfully, she responded to that treatment plan and required no further medical intervention for the reaction to the protein.
On August 10th, 2014, two days before her 20th birthday, Bobbi went home.
It's been a whirlwind of central lines, plasmapheresis and medications with no real answers. Given her very young age and the rarity of the condition, she has a team of eight providers treating her. She's been seen by multiple students, who can now see TTP in person rather than in a textbook. While she is feeling like a circus sideshow, she knows that by allowing herself to be center stage, she may help that one person find the reasons and the answers to the ‘whys’.