On July 6th we met with Dr. Yasenchak who we were told was one of the best lymphoma doctors around and that people for miles drove to see him. We were very confident we had found the right person for Mayleigh and that we would be meeting to setup our appointments for recovery and get chemo started etc. That was not to be the case.
We entered the room and he asked how she was feeling. He did not get right into things immediately and we could sense that something was not good. We continued to listen to Mayleigh tell her story of how she came to be there and we helped chime in as the story had been told many times at this point. Once he was done he began to tell us that what our PC doctor thought initially was a peripheral t-cell lymphoma was not the case and that Mayleigh had Acute Lymphoblastic Lymphoma and that he did not have the resources for treatment and that he would have to refer her.... again.
This was not the news we were anticipating and it was devastating to hear that we just waited another week to hear that he wasn't able to help her. It also made us greatly regret not getting that Friday appointment as we would of had answers the previous week. But we can never look back as it does no good for anyone. All we could do was allow him to get us where we needed to be and that was OHSU... the same place we almost went a month prior had we not cancelled the appointment.
He said we would probably need to start heading up to Portland immediately or possibly the next day. We told him we had been gone a week on vacation and that we were running low on supplies and were really needing to come home first. He said that would probably be fine and to go home and prepare for a phone call from OHSU within the next day.
We drove the 2 hours home to North bend and within a half hour of being home Dr. Medvedova contacted me from OHSU explaining that we needed to get Mayleigh up there immediately. There was no other solution and to do anything different would go against her orders and it was not recommended. I told her I would call her back as we had already dropped Mayleigh off with her fiance as they hadn't seen each other in a week. I called her and she was devastated. She was already making plans to go out to dinner with her fiance and enjoy the night before she had to go but there was no longer any time to wait. My mom and dad from Montana were here in the meantime waiting for us to get back from Boise so they could see us as well as my brother and his wife and kids whom one of them we had not even met. It was hard for all of us to basically say hello and then good bye just a few minutes later. With heavy hearts and an extreme sense of urgency, we left home for OHSU.
We arrived at OHSU at 9:30 pm on July 6th and she was immediately taken to her room and hooked up to IV's. They then accessed her portacath for the first time which was somewhat painful as they had to poke her twice to get it (we are beginning to get used to things not happening on the first try for Mayleigh unfortunately). This device resides above her right breast and is connected using a catheter straight to a vein for easy administering of all the different drugs she will receive including chemo. This was done during her biopsy in Eugene and sped things up quickly. The first RN told her they would have to install a pick line which scared her out of her wits as she was under the impression that was what the port was for. The Dr. later put in her notes to cancel the pick line as she had a port so it was a simple misunderstanding. This brought great relief to her as they would of had to string a line through her arm all the way to her heart which did not sound like fun.
After getting her settled in and getting all the tests and the initial setup done, we were finally able to get her comfortable and get some sleep. It was an extremely long day that ended around 1:30 am. We went to the cafeteria to get something to eat where we were first made aware of what was going on in the outside world. As Black Lives Matter took hold of the country, we took hold of the only thing that mattered to us and that was Mayleigh's life. It was definitely frustrating to see such chaos around us but we had to remain focused and we knew that tomorrow was going to be incredibly difficult for her. Even though we had been given a horrible diagnosis, we were thankful we finally had Mayleigh in the place she needed to be.
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