Tuesday, November 29, 2011

the checklist

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!

14 comments:

  1. Wow you are the toughest and strongest family I have ever heard about! :) stay strong! Good luck! Also going back to Christmas at st judes I hear they bring in some big time celebraties!

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  2. Dear Annie. My continued positive vibes will be winging with you to Tennessee and what is to come. Wishing all of you the strength that you need. With love, Cate

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  3. Annie,
    I am so thankful that you are so darn techie. We all love Kayla so much and reading your nightly blog means a lot. Thank you for including all of us. I am continuing to pray for all of you as you prepare for this journey. I have been thinking a lot about the fun times we have had with all of you. I think my fondest memory is of Caitln, Carli, and Kayla riding behind the boat on Big Mable this past summer. The girls had so much fun and their smiles were huge. I will miss you while you are gone but the miles and time apart mean nothing compared to Kayla's health. I admire you and Denny for your strength and determination in what is definitely a difficult time. I am proud of you for setting boundaries and speaking up about the time you need to take for your family. I have always known that you are amazing and yet you continue to amaze me more every day. I love you all.

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  4. WTG Annie, that's the way to get things done. I hope they get the slides out right away. I understand you wanting to get right onto this. We will be praying every step of the way. Susie

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  5. Good for you guys being persistent and organized! Thinking of you all! Thank you for the blog posts. We look forward to reading them every night. Love Tomaz, Diana and Isabella

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  6. What a day! A parents love for their child can move mountains. You and Denny are loving and amazing parents!! Praying all of you have continued strength and determination.
    Love and BIG hugs,
    Lisa Byrne

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  7. That is awesome that you all our on top of your game. Hearing stories, and experiencing things myself with DRs. Is you always gotta find the best, and trust your gut. Always speak up. I believe Kayla is in the best hands, her parents. Believe it or not, not every parent is like you guys! Really. It seems crazy. But some parents don't even visit their kids in the hospital. Too many in fact. Its so sad. In fact to have both of her parents so strong and doing so much for her, she is very lucky. I am sure that with prayers, and all that you two +family and friends are doing for her. Plus an amazing healthcare system. She will do great. Child life is an awesome thing. They do so much for kids. And the fact that she can stay in school at the hospital is also awesome. It seems intense, but you sound to be adjusting well to the new changes. Its just a new way of life, for now. Love you guys, keep staying strong!

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  8. Ohhhhhhh, You are LOVE...
    It is an overwhelming honor and blessing to share the air of this world with you. We are all bearing witness to you who travel and hold hands with the Holy Spirit. You are showing us how. Through your words we get to walk behind you and follow your light. Thank you! Bless every step you take on this new journey of healing. With gratitude, constant prayers and love, Mary and Frank Hoburg

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  9. Just keep opening and walking through those doors CHECK CHECK CHECK! YAHOOO! OMG vending guy and the "I'm on your floor" made me chuckle with laughter! I adore you and your humor so incredibly much. And @ WU why does Big Mable always get all the credit, us Pahland breed fun, smiles and lifelong bonding on the lake LOL! That was a great trip!

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  10. So glad to hear you got everything you need! Such a daunting run around! Our time at UCSF was spent running around like that a lot too. St. Jude is going to be a great place for Kayla. Sending prayers and love!

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  11. That's the thing with UCSF. There are really a whole bunch of diamonds, but a lot of "rough" too. Keep at it Annie! Kayla is so lucky to have such kick-butt parents. You are and will always be her best advocate.

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  12. You guys are awesome! Thanks so much for all you write Annie. It is probably therapeutic for you to write it all out. You are a great writer and in all this you still seem to find the humor and make us laugh a bit. I think about you guys non stop so I love reading it all and knowing what's going on. I'm so glad you are taking the journey to St. Judes. I can't imagine a parent that wouldn't. It sounds like she will be in fantastic hands there. I've seen their commercials a zillion times, but yesterday I saw one when I was on the treadmill and burst into tears. Good thing I was in my house and not the gym. Those commercials will forever have new meaning for me. Keep pushing Annie! You and Denny are awesome and Kaley is so lucky to have you. Love, Lannette

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  13. Shoot, sorry! Wrote Kaley instead of Kayla. Sorry!!!!!! xoxxox

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  14. I know everyone reading your blog really appreciates and relishes the details of what you go through - it helps us feel like we are there with you! You are becoming a pro at this, and you are totally right that a smile and cheery hello in person for people who administer things you need is the best way to pave a flat and clear road in this process. You are a natural!

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