To recap; last week Bryon took part in his regularly scheduled MRI. The only difference in that trip was that we would not be able to see Dr. Jensen, Bryon's neurosurgeon. Dr. Jensen had to participate in a more urgent matter and we were asked to reschedule for Tuesday, July 15th. I tried to work it out with the doctor's nurse, Melody, a way to get a visit in on Monday when we come for treatment instead of having to be in Salt Lake for two days. Melody explained that there had been a mix up and we were never supposed to be rescheduled, but she would see what she could do.
Sunday night, I had made arrangements for the kids to stay with friends and family, and Bryon and I were going to leave that night and stay in Ogden. Before we could leave, I was unable to contact the family Audrey was going to be staying with. We went to their home and no one answered the door. Troubled by this, we went home and tried to figure out a new strategy. Luckily another neighbor was trying to get a hold of me and graciously agreed to let Audrey spend the night. After we had dropped Audrey off at the neighbors and Anna at her Granny's house, we were finally on the road. Our cell phone was MIA, so we had no way to contact anyone...keep this in mind for later.
We slept fine that night and woke up ready to head to SLC. When we arrived at the hospital it was 7:11 AM and we were anxious to get going. The nurses took one look at us and said, "your not supposed to be here." They had not received any information that Bryon did get an MRI, this meant they could not confirm if the treatment was working well enough for him to continue with it. Nurse Michel got on the phone to contact someone who could resolve the issue. After about an hour, the doctor on call named Julie, arrived and got Bryon approved for treatment.
The next step was to draw blood and make sure the cell counts were good. That part does not take long at all, but the lab had other ideas. There was another delay in the lab which meant another hour goes by without treatment. Then the pharmacy had a delay with the medications, good bye to another hour of their day. Finally all was ready to go, but it was already 1:00PM when Bryon finally got started. He had a scheduled release time of 9:00PM that evening. Oh joy.
Now, remember we haven't seen the scan so we are still waiting to hear what is going on with it. Sara was able to drag down Julie and ask what was on the scan. She explained there were some changes, but it was normal. The previous scan had no visible tumor, so if they can see something now it is officially growing. To the health care people this is good. They can chart the growth of the tumor while on their drug. Bryon and Sara, however, did not get any explanation on how much it had grown and what to expect in the next 8 weeks.
To clear her mind, Sara went and tried to do some study work on the internet at the learning library. This was her perch most of the day, but she managed to relay some information via email since she was unable to call home. Since the girls were at Granny's house, they needed to know when their parents were coming to pick them up. Some how, through Facebook, Granny found out there was trouble in SLC. Aunt Janie had tattled since she had seen the post on the web. Now every one was in a panic!!
By the evening time, Bryon was resting and Sara was getting his prescriptions filled. It couldn't go smoothly or it wouldn't have been a Monday. The pharmacy said everything would be ready 15 minutes after they were called in. Sara went to pick them up an hour later and they informed her that they were out of one medication and, regardless, both medications had to be paid for in full with cash. The insurance company had problems with their computers and would not pay for anything till they were back online. GRRR!
To spare you any more details, the day was down right crappy, but if it wasn't for crappy cancer we wouldn't have crappy cancer treatment days. (Some photos were taken just so you can get an idea of what goes on during treatment.)
The new hospital...it has been under construction for quite some time in case you were unaware.
"Hey your not supposed to be here?"
Labs, labs, labs....where the *&@# are the labs?
Fresh lemonade for the hard working technicians at the University Lab.
Bryon eating breakfast, and Dr. Julie trying to take his vitals.
Bryon has 3 ECG's throughout the day to monitor his heart.
Now don't move or the ECG won't be accurate!!
Waiting around was the longest part of day...quite boring as you can tell.
What fun, huh?
That does sound very frustrating. Part of the problem is that everyone one the medical team has to talk to each other. It sounds like they got it worked out, but it didn't go anywhere near as smoothly as it should.
ReplyDeleteBryon looks great, BTW.
Hang in there, guys. You're doing important work. Not only do we hope that Bryon benefits, but the people who follow him are likely to benefit. The frontiers of medicine don't advance without brave and generous people like you guys.
Thank you for your comment Troy...it made me feel much better about everything.
ReplyDeleteOf course nothing could run smoothly right? What a day! Just hang in there, and hopefully next time it will be better.....I mean, really, it couldn't be much worse right? I wish there was something we could do to help. Please let me know if there is!
ReplyDelete