If someone had told me on Thursday, November 10th that I would be sitting here only 19 days later with Kayla recovering from brain surgery and getting ready to hop onto a plane headed for St. Judes, I would have laughed hysterically. Isn't it amazing how life can just change in the blink of an eye?
Today was a day filled with preparation. Denny and I got up super early to head into San Francisco to get the ball rolling on this whole process. It was cold and foggy. Denny was the only person wearing shorts! I laughed at him when he realized he was a tad chilly. I told him that he shouldn't plan on packing shorts to wear in Tennessee! We're going to have to get this cali boy some warm gear before we head East.
Over the Golden Gate Bridge again:
Our appointment with Oncology was at 9 a.m. We walked into UCSF and took the elevator down to the basement level. Isn't it ironic that Oncology is located in the basement? Anyhow, we waited for what seemed like eons, but was really 25 minutes, for the doctor to arrive. When she arrived with two other people (one being Dr. Mueller's resident) we got down to business. To recap: the resident was the person who dropped the bomb on us the night before we received the results from the oncologist. She was the one who told us at the foot of Kayla's bed that they needed more time to come up with a treatment plan and that was why it was going to take some extra time. Ok, onward. The doctor was disappointed that we did not bring Kayla to this appointment and that without examining her, she would not be able to get all of the info she needed. Denny and I explained that we asked (with 3 witnesses in the room) if Kayla needed to be present for this appointment and we were told, "no". We moved on. The Doctor said that after getting the full pathology report, she would want to start treatment earlier then they had originally though. She wanted us to start as early as next week. We figured that would be the best time to fill them in about St. Judes. I said, "well, about that... actually, Kayla has been accepted to under go treatment at St. Judes." Their eyes widened and all of a sudden all three of them were smiling! It was so strange. It was as if I read relief across their faces. Without saying anything, they congratulated us and wished us the best. It was so strange though... the room just felt lighter and the air smelled a little better. They were nodding and smiling as if to say the approved in our decision as well. Who knows. That is my interpretation.
On a mission:
We left their office to start on our huge daunting task of obtaining ALL of the records that needed to be forwarded to St. Judes.
Denny recalls our route best. We seriously could have used roller blades. First we left the basement and headed across the street to the second floor (Dr. Gupta's clinic). No one was in the office today. Nice! Then from 2nd floor clinic to the 8th floor clinic (where we learned that ALL of the people we needed to get our information were out all week on a conference). Then from the 8th floor clinic we walked back to the hospital again and went to the 3rd floor to the Radiology film place to get our MRI discs burned. Oh, but wait! The burners were down!!! Of course they were. So then we went back across the street AGAIN to pediatric services. That wasn't any help. Then we got sent to medical records in the basement level. Ding Ding Ding!!!! We have hit the jackpot here. It was a tiny office with only one person working. She was a HUGE help. Why hadn't we thought to go there first? Ok, so now you all know just in case. After signing more Hipa release forms, we walked back to the hospital side to see if the disc burner was back up and running. It was! We waited maybe 15 mins and got two discs burned. (One for a back up) We went back and forth so many times. The guy at the vending truck selling sandwiches and things just smiled and laughed each time we walked by.... again and again! From there we had to drive over to Mt. Zion which is a different UCSF building. This is where pathology is located and our slides were. I called when we were walking from our car to give them a heads up that we were on our way up. Surprise surprise, they had no clue we were coming for the slides and they guy sounded so frazzled. He explained that it would take some time to get these ready. At least a day or two. As he is trying to rush me off the phone I kindly told him we were on his floor and I would appreciate so much to speak with him in person while we were physically there. He kind of had no choice! I am SO glad we went in. He wrote down specifically what Tabitha (from St. Judes) was needing along with all of her info. Sometimes things just go so much smoother when there is a face and not just a phone call. I am crossing my fingers that when he gets the slides back that he sends them straight away and they make it there all right. That is the only thing that they will be waiting on now so we can get our itinerary! All documents were sent overnight and they should be holding all of my baby
s records in just a few short hours. I must admit I was tempted to jump on a plane and hand deliver them to ensure they made it safely. I did make back up copies of everything though just in case!
Later today, Dr. Mueller's resident called our house to confirm that they cancelled our appointment for Thursday. She said they all wished us the best of luck and that we could call any time if we need them in the future. Then she started asking me a bunch of questions about St. Judes. She said she was just curious from a "learning standpoint". I thought that was interesting. So, hopefully everything will arrive tomorrow safe and sound and we will be one step closer to a real date on when all of this will begin. Denny and I have so much preparing to do still. I know so many of you want to help, but unfortunately we are the only ones who can do this part. Again, what part of all of this is convenient again?
Good night friends!!! Hug each other tight!