So I always think of Nov 11, 2012 not only as "pre surgery prep night" but also Bruce Springsteen night since we were given tickets for his concert in Minneapolis, well, St Paul, through our stay at the Ronald McDonald House. I mention it because it is connected to that emotionally vivid point in time where my thoughts and feelings are always so strong, as was the fear.. it was exactly what we needed before surgery day. Tiff and I still go to many music shows together as maybe it is a bond we have that was strengthened through this journey, or I just raised her to like good music..hehe..
Anyway, UPDATES - Tiffanie graduated college with her Bachelor's in Nursing! I am so proud of her and how she has overcome obstacles to get this done. I was not always easy and she really worked hard to get to her goal. I can't wait for her career to get started and the next phase of life begins. She was able to go to Guatemala on a nursing mission trip and it impacted her greatly. She saw new places, provided much needed support and connection for children and families. As far as her health - she remains stable. Sometimes she forgets to take her enzymes and that can be a problem for her GI system but overall, nothing major. Her islet cells still seem to work, a little but she relies on her insulin to keep her going. she still uses her pump but I don't think she checks her sugar often enough or really takes care of herself. Sleep is difficult and I always worry she doesn't truly feel good. I guess knowing what she went through, that worry will always be there. Though it is sometimes hard, I have stopped "waiting for the other shoe to drop" so to speak and don't worry quite as much that something will come up. The phone calls or times when she says "mama I don't feel good" do not evoke the same fear that it used to, even post surgery. As Dr Freeman said at one of our visits to Minnesota for follow up "It's time to stop worrying and start living" and she definitely has.. Love her so very much. We may make a final trip to Minnesota this January but I don't know yet. Thank you all for the love and support you have shown to her, and to the family over the years. It will never be forgotten.
Please remember to support research for pancreatic diseases and pancreatic cancer. And also remember that there are so many people suffering, and that is the reason we do the research. Oliver Sacks said it best... "In examining disease, we gain wisdom about anatomy and physiology and biology. In examining the person with the disease, we gain wisdom about life." ` ------------------------------------------------------------------------------------------------Tiffanie's updated photo book: https://belindasphotos73.shutterfly.com/2989
Video from ChildhoodPancreatitis.org that Tiff and other families we met are in
http://www.youtube.com/watch?v=fGI5317DC6Q
Video made by Uof MN Amplatz 5th floor where Tiff was. Such a great team! We saw a couple of people we recognized and a family from RMH that we remember
http://www.youtube.com/watch?v=N8xnLkyKgsE
