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Sunday, August 23, 2009

Humpty Dumpty


I've been a little delinquent with updating the site and I apologize to my loyal readers. Since Andrew left the hospital, he has been doing very well and has needed little to no anti-nausea medicine to keep him going with his regular routine. Andrew and I both went back to work this past week and tried to resume a normal schedule. We (and Steve) also went to Johns Hopkins on Wednesday to meet with Dr. Kristy Weber, Andrew's orthopedic oncologist. The meeting was informative, concerning and left us all with a lot to think about. Dr. Weber explained the best and worst case scenarios of surgery. Best case scenario, the tumor has shrunk and only a small amount of the Ischium and Pubic Bone (area 3 and 4) and the muscles and tendons around the infected area would need to be removed, and possibly a horseshoe shaped mechanism could be reattached to the hip bone (area 2) to form a pseudo hip joint. His mobility would be compromised but the length of his leg would stay relatively the same length. Worst case, the entire area(area 3 and 4) and the part of the hip joint (area 2) has to be removed, no mechanism put in its place and his leg could ultimately be about 2-4 inches shorter than his right leg leaving him with less mobility, needing lefts on his shoes and at least a cane for the rest of his life. We won't know exactly how bad surgery would be until he has his next scan in week 13 (we are starting week 11 today).
Now its up to us ... to find a doctor who is willing and able to try and rebuild the part of the hip that will need to be removed. We are all on a hunt for any orthopedic oncologist in the country who is doing an kind of experimental treatment or surgery to reconstruct Andrew's hip. I know we will find someone. Andrew is having a hard time coming to terms with the fact that if the surgery has to be done, he will walk in normal and walk out a completely different and ever changed man. There is a possible alternative to surgery ... radiation therapy. Though at first glace, it sounds like a better option; little to no nausea, just a few minutes a day for 5-6 weeks, no real pain; the long lasting side effects can be hard to stomach; the return of cancer, liver, kidney and bladder issues or failure, heart issues. But we will be meeting with a radiation oncologist associated with Johns Hopkins the Tuesday after Labor Day. She will help shed some light on radiation and help us to better make a decision.
Whatever is done will probably happen between weeks 12-18 of the treatment.... so right around the corner. As for now, we will continue to see other doctors until we find one ..... who can put Humpty together again.......

Sayanora!

5 comments:

  1. We'll definitely be praying for you as you work to find a doctor who is a good fit for you and your goals. We are headed to the Cleveland Clinic in a few weeks to see if maybe our good-fit doctor is there... Thanks for your example of positive persistence!

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  2. Sometimes I'm enjoying reading stories about Pete and Linda and how well Andrew is handling everything. I forget what I am reading about.

    Best of luck with your search and continued thoughts and prayers!
    Emily

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  3. "There are no classes in life for beginners; right away you are always asked to to deal with what is most difficult." -Rainer Maria Rilke

    You guys have already done what is most difficult during this time and that is staying focused on recovery and remaining positive even in the face of abysmal news. Stay strong together and we're with you every step of the way.
    -Love, Lanhi & Gary

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  4. Amy and Andrew,
    You are such an inspiration to all of us! What you face everyday and how you've been facing it, is simply remarkable and absolutely amazing! We love you guys so much and are here if you need anything!
    Keep the Faith and keep doing what your doing!
    Love ya,
    Jenn, Jimmy, Domenic, and Aylissa

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  5. Dear Andrew and Amy,
    Our prayers and thoughts are with you both. Next weekend is our annual "Inner Harbor weekend". It will not be the same without seeing you. We look forward to next year being with you both again in Baltimore.:)
    Remember we are always here for you!!!
    Love,Roberta and Lyle

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