February 11, 2020 – Today was Justin’s first transplantation of cells into his spine. The first half of the day was spent completing bloodwork, an EKG, and other pre-procedure measures. Then he was admitted to the hospital for a 24-hour stay. I was not allowed to stay for the procedure; Justin said it was uncomfortable but went smoothly.
February 12, 2020 – Last night, Justin got a headache, which is a common side effect with transplantation’s. It lingered throughout today and he also developed soreness in his back. That didn’t stop us from hitting Rodeo Drive for some sightseeing and an Irish Pub for a fine pint of Guinness!
March 9, 2020 – Justin had a follow-up trial appointment at Cedars-Sinai. I stayed home with Varen so she wouldn’t have to be away from us again. Our good friend Eric went to L.A. with Justin so he wouldn’t have to travel alone. We’re so thankful for our awesome friends and family for support like this! Justin hasn’t felt any difference since the first transplantation, but the neurologist said it would likely take several weeks, maybe even until after the second injection, for effects to take place. It’s not an instant process.
Justin’s speech and use of his hands and arms have steadily declined since the first of the year. He’s noticing that it’s harder to do things like shave, get dressed, eat, brush his teeth, etc. without help. We need him to get NurOwn and we need it to work.
Throughout this month, we’ve been paying close attention to news about the new COVID19 virus that swept through China with deadly results. It’s hit places in the U.S. now and there are talks of travel being prohibited. We’re wondering about the effect this might have on the trial if domestic travel is prohibited to stop the spread of the disease. NurOwn has already lingered in the trial stages for TEN YEARS and although we don’t want to travel if it’s not safe, we pray the trial won’t be affected.
April 7, 2020 – Today we left for L.A. amidst seriously strange conditions. The trial is still on, but with many modifications because of COVID19. Schools and many businesses have been closed to prevent spreading the disease. Travel outside the state requires a 14-day self-quarantine upon return, and many people are wearing medical/hospital masks to prevent spreading or catching the disease. Our direct flights were cancelled and rescheduled with layovers, meaning we’re being exposed to various airports and planes. Still, we decide the trial is too important not to go. We donned our masks and off we went!
Airports, planes, and the L.A. county were nearly empty. We didn’t see one other guest at the hotel.
April 9, 2020 – Today was transplantation #2. We went to the neurology center together for testing, and then Justin was admitted via the emergency room due to new COVID19 admission rules. I had to leave Justin there at the emergency screening area and return to the hotel alone. I cried the whole way there. I wanted to be there for him, knowing the things he needed help with and hoping someone would have the time to be there for him, as the hospitals were overwhelmed with patients and COVID19 changes and restrictions. He assured me that the staff were tending to his every need. They’ve been wonderful.
Later in the afternoon, Justin called to say the procedure went well and he was feeling okay, with no headache this time. The 24-hour stay was being waived so he didn’t have to stay in the hospital any longer than necessary, and he was released as soon as post-testing was finished the next morning. I just wanted him out of the hospital and on his way home where I knew he’d be safe.
April 30, 2020 – Today was Justin’s last day at work. His speech made it too difficult for his customers to understand him, and he could no longer type well. It was a bittersweet day. He hated to leave a company and people he loved, but he was glad to end the daily struggle to keep up. Still, having to file for disability as a 36 year-old man whose mind was still sharp as a knife was tough.
May 5, 2020 – Justin’s trial check-up was via phone instead of in person like usual, so he wouldn’t have to travel amid the virus shutdown. He still hasn’t noticed any improvements in function since his second transplantation. In fact, he feels like he’s continuing to decline, particularly in speech and upper body functioning. His legs are still strong, but very unsteady. His next transplantation is the first week of June. We’re not giving up hope that improvements are still possible, but we’ve had to accept the idea that he may be getting the placebo. We completely understand the need for placebos and control groups in scientific studies. But it still seems a cruel and inhumane thing to require for patients who are already terminally ill. What side effect could be worse than ALS? Still, we continue to hope. It’s all we have in terms of improving his quality of life until the trial is over and NurOwn is approved (hopefully) and available to patients.