I have been meaning to update for the last several days, but things change so fast, it feels like I am dealing with a moving target. This update is a bit long, so bear with me. A lot has happened.
Over the weekend of Oct. 29th and 30th Katy's oxygen fell . So on Monday, Oct. 31, her teams decided to take her into a bronchoscopy. She had received the IV steroid boluses, but they were worried she may have an infection as well. Katy's blood counts were coming up, which gave her body the opportunity to mount a response against infection. So this is the time in the chemo process that the doctors start seeing infectious symptoms.
The bronchoscopy showed the large airways in Katy's lungs were fighting off some sort of infection. They took a sample of the fluid in her lungs. Then it became a waiting game to see what organisms grew back positive. It would be either viral, bacterial or fungal.
As we waited, Katy's white blood cell counts bounced back with strong gusto. Her mucositis improved greatly. She stopped sleeping so much, started eating, and became more interactive with everyone. By the end of the week, the only positive result was Rhinovirus, which is the common cold. It can be dangerous in immunosuppressed individuals, but luckily Katy's blood counts were up enough for her body to fight off the infection.
Meanwhile, due to the steroid boluses, Katy also became diabetic again. So during the week, the endocrinology team worked hard at getting her sugars under control. Also, her transplant team still believes there is inflammation in the small airways of Katy's lungs, which is not due the infection, but instead, due to scar tissue increasing. This increase in scar tissue can lead to chronic rejection of the lungs. So, Katy will continue her treatments for this. Dr. Conrad (Katy's Stanford pulmonologist), asked the oncology team to put Katy on a medication called Perfinidone, which is a new, extremely unusual and hard medication to get. But they were able to order it and Katy has been on the medication for over a week.
So, on Thursday we got word that Katy would be discharged on Friday. Woohoo! Friday came and, of course, there was a glitch. Our insurance would only pay for the Perfinidone (which is extremely expensive) by our mail order specialty pharmacy. The doctors and I worked hard to get a guarantee that the medication would be delivered on Saturday. So we spent the day in the hospital, so Katy could get all three of her doses of the Perfinidone. She also got a transfusion of Platelets and performed her Pulmonary Function Tests (PFT's) again. Her performance on the PFT's had significantly improved. So Friday evening we blew that joint. So HAPPY!!
Until Saturday mid-day. I got on the computer to track the arrival of the Perfinidone. Much to my dismay, a mistake was made. The pharmacy sent the package overnight business, instead of overnight, with Saturday delivery. The Perfinidone would not be here until Monday. So I contacted her doctors and it was decided she had to be admitted again in order to receive her 3 doses a day until Monday. Dr. Conrad informed her oncology team the medication was too important to skip. As you can imagine, Katy was devastated. She refused to go to the hospital until she spoke to Dr. Conrad personally. Dr. Conrad did an amazing job of explaining the importance of staying on the Perfinidone. She was so encouraging of Katy's hard work in keeping herself healthy. And very empathetic to the situation. Katy bit the bullet, and allowed us to hospitalize her again for a couple of days.
So that is where we stand at the moment. Just a few more things to mention. Once Katy is discharged tomorrow, she will be out of the hospital for about a week. On, Tuesday (election day), Katy will undergo another bone marrow biopsy, in order to determine the effectiveness of the first round of chemotherapy. These results will determine our next step in her treatment. There will be one of 3 options. First, the leukemia is in temporary remission and our next step will be the bone marrow transplant. Second, the leukemia is partially gone and the next step will be a second round of the same chemotherapy Katy just underwent. Or third, the chemo didn't really touch the leukemia. In this case, we will need to do some soul searching in how to move forward with treatment.
Finally, the last two weeks have been hard for our extended families. My mother's cousin, Carolee, passed away from liver cancer. My Aunt Jo (my father's brother's wife) died a week after having a stroke, which led to the discovery of stage 4 metastasized cancer. And finally, Jim's grandmother Arlene (Katy's and Emily's last living great-grandparent) died at the age of 96. Please keep these families in your thoughts with us. We are sending our deepest condolences, and all our love, to them.
Thanks for taking the time to read this update. We continue to appreciate all the loving support.
Christina
