Claudia Caminiti


Oct. 11, 2020 – Thanksgiving weekend, a year that was already an abnormal one with the COVID-19 pandemic. Families couldn’t gather, so I was planning a meal with my husband and three daughters. Selena, our 19-year-old, had gone to work that morning. She came home for lunch as she wasn’t feeling the greatest; she was tired and didn’t have an appetite. The week leading up to this day, Selena had complained of abdominal pains a couple of times and had random nose bleeds. We didn’t think much of it as she had nose bleeds when she was younger and needed her nose cauterized in the past. As for the abdominal pains, it also wasn’t abnormal as her cycle had just started earlier that week.

When Selena arrived home from work at lunch, she went right to the couch to rest. I went to go and see her and noticed her colour was off. I asked her if she was wearing make-up as I thought maybe she just wore a shade of foundation that didn’t match her skin type. When she told me she wasn’t wearing makeup, I knew there was something wrong as Selena was jaundiced. I told her to get up as I took her to the hospital, but she insisted on going back to work as they were expecting her back. I insisted that she come with me to the hospital as she wasn’t helping anyone by going back to work. “What if you have COVID?” I said, “You need to get checked.”

We made our way to a hospital close by, and unfortunately, I had to leave her in emergency as with COVID, they weren’t allowing anyone in but the patient. Selena had a round of labs done while waiting for approximately 5 hours to see the emergency physician; she hadn’t even seen a doctor yet. When her initial blood work came in, they brought her to a room, and the doctor entered to speak with her, he asked her if she could call her mom so we could all chat. Over speakerphone, the doctor informed us that Selena’s blood work came back and her platelets were unusually deficient for a 19-year-old and that she was severely anemic. He told us that he had already spoken to the hematologist and that Selena would be admitted to the hospital so that they can start a blood transfusion while we wait for the hematologist to run some more tests. I hung up the phone and had an uneasy feeling about everything that was happening; I couldn’t even go and be with her. An hour and a half passed when I get a call from Selena and the hematologist. He goes on to tell us that Selena’s condition had just gotten more serious as her blood work that was coming in was presenting a condition called TTP. We needed to transfer her to one of the larger hospitals to start a treatment called plasmapheresis. Time wasn’t in our favour, and treatment needed to be started ASAP.

I got to the larger hospital where Selena was transferred. Whole blood was being infused as we waited for the team of doctors that would insert her central line. When the doctor came to talk to us before the procedure, she explained to Selena and me that with platelets as low as Selena’s, they normally wouldn’t even attempt to insert the central line as she could bleed out to her brain if all didn’t go as plan. However, we also knew Selena needed the treatment to save her life. I then hear Selena tell the doctor, “Okay, let’s do this, but please don’t hurt me.” My heart broke. I kissed her and told her to be strong, and I will see her in an hour. I thought this would be the longest hour of my life. Little did I know that TTP had more plans for our family; Selena’s procedure went well!

Oct. 12 comes around, and the plasmapheresis has started with prednisone. During these next 5 days, daily plasma exchanges occurred, and Selena seemed to respond well to treatment. Day 6 hits, and her platelets start to drop. We were warned this might happen as platelets go up and down but will eventually stabilize, but as the days passed, Selena’s platelets kept falling. During our second week in the hospital, the doctors decided to get even more aggressive with Selena’s treatment and begin plasmapheresis twice daily (once in the morning and again in the evening). Selena had no energy; she was always sleeping and was looking very jaundice. I kept asking more and more questions as I didn’t understand why the “typical treatment” for TTP wasn’t working. As every day passed, I was scared more and more as I was informed of all the complications that could arise from low platelets. During one of Selena’s treatments, her apheresis nurse told me that there were support groups that I should reach out to hear other TTP survivors’ stories; maybe hearing from others could help me as a mother cope. I signed up and quietly read people’s stories while I cried and realized even more what could happen to my daughter if she didn’t start responding to treatment. I read on this group that a new drug called caplacizumab kept patients safe as it did the work of the enzyme Selena was lacking until the normal treatment Rituximab and plasmapheresis kicked in. I asked her doctor that day about this drug and was told that the drug was approved in Canada in March 2020 but was not being used as it was costly and that what we were doing was the normal treatment for TTP, and that she should be responding to it. All we knew of caplacizumab was that it sped up the recovery time. If only we knew what the next few days had in store for us, I would have reached out to the pharmaceutical company that day!

A couple of days pass, and on Oct. 23, Selena was lying in bed talking to her Dad on FaceTime. As I was sitting next to her, texting the family that Selena was getting ready to have her second plasma exchange of the day, the nurse was in the hallway setting up the machine. My head was down, and I hear my husband ask Selena, “what are you doing?” then, “Selena, what is wrong?” I look up and see Selena holding her jaw, unable to speak and crying. She points to her mouth and is slurring. I yelled to her nurses, knowing in my heart my daughter is in trouble. The code is called, and not knowing where my strength is coming from, I kept telling Selena, “Mom is here with you. You are going to be fine. Stay strong and fight this.” They brought Selena down for a CT scan, and MRI then moved her to the ICU. I was told Selena suffered a stroke, and she is at risk of more if she doesn’t start to respond to treatment. When Selena regains her speech, she tells me, “Mom, I am scared; I don’t want this to happen anymore. What if it does, and I can’t talk anymore?”

Oct. 25 Selena suffered her second stroke. As a Mom, I felt helpless that I couldn’t take this away from her; if I could, I would. If I could trade places, I would. I prayed that if some above needed someone to please take me first.  That evening another doctor enters our room and says he is not sure why Selena is not responding to treatment and mentions that there is a new drug out there called caplacizumab (not knowing I had already asked about this drug); he indicated if someone deserves a shot at this treatment, it is our patient: a 19-year-old who is having mini-strokes. Not sure where the money would come from, and knowing no one has received this drug, he put in a stat request to our hospital to see if there was anything they can do to bring it in for her. Hoping for an answer within 24-48 hrs.

Oct. 27 comes around, still no answer, and Selena suffered her third mini stoke. I looked up the manufacturer online, and the web takes me to a pharmaceutical company’s website. I see the tab that says contact us, so I did! I was surprised someone from the pharmaceutical company answered, and I began to cry and tell them I am the mother of a 19-year-old girl in the hospital trying to fight TTP but is not succeeding. I said TTP is taking my daughter, and I was wondering how we can get her caplacizumab. I knew it was expensive, but we needed to try. I got the information I needed and asked Selena’s doctor to reach out to them. He did, and within 10 hours, the pharmaceutical company had the drug at our hospital. Her first dose was given through her central line at approximately 5 p.m., followed by plasma exchange and her second dose of caplacizumab. The next morning, approximately 16 hours after her first dose of caplacizumab, we anxiously awaited for Selena’s labs to come back. The nurse came into the room with excitement and told us that Selena platelets have gone up for the first time in 11 days, and they kept increasing every day.

Within 4 days of better labs, Selena tells me, “Mom, I am feeling great again.” I knew caplacizumab gave me my daughter back. It was the first time in 2 ½ weeks that I felt that we could fight this disease. I could see the hope in Selena and all of our family that we had a chance. Selena spent a total of 4 weeks in the hospital and 3 weeks of her stay had plasmapheresis. Caplacizumab was her turning point. caplacizumab got her home, caplacizumab kept her safe until the other medication had its time to work. Selena officially entered remission in December 2020. Our daughter was given a second chance to follow her dreams and continue her journey that life has planned for her. Our family was given a chance to share more time with Selena. I will forever be grateful to the emergency room physician, the hematologists, nurses, ICU team, TTP survivors, family, friends, and the makers of caplacizumab for giving Selena her second chance!


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