A Clinical Trial: One Family's Experience

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Presentation at the 2011 National MPS Society Family Conference

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  • Quick update: Extremely excited about the potential for ERT. If you saw Case at last year’s meeting, you’ll notice a big difference. Would be happy to answer individual questions, or updates also on website.Have been chronicling our journey in the trial on SavingCase Blogged about many things, including Top 10 signs you’re in a clinical trial
  • As some background, including the screenings, this trial involved trips of 5-9 days each month for the last 9 months. Now 4 days.Involves big time commitment, and lots of patience.
  • A clinical trial can teach you to be more assertive, because you are advocating for your child more often.You also tend to spend lots more time in hospitals, so you have to learn to get more comfortable with that, with doctors, nurses, how to calm your child, the things they like the best, etc.
  • You need lots of things to occupy your child’s (and your!) time. Lots of hurry up and wait where you can’t really get anything accomplished other than busy work.
  • The clinical trial just has to be melded into your life. We consider it a “vacation home” and we do the things we normally do, and have to do, at home.Significant events, like birthdays, taxes, anniversaries, etc. sometimes happen there and you miss celebrating them with your family.
  • Their schedule is totally off. And so is yours. And things happen that you don’t expect. You have to learn to go with the flow.
  • You have to get used to all the travel You have to plan everything out and be prepared and it is less stressful You have to look on the bright side of everything (frequent flyer, hotel points, relaxing on the weekend, meeting other families)
  • It is a great benefit to:Get to know your child’s doctors even better Have ample opportunities to ask questions, learn more about the disease, bounce ideas You also realize that things happen in a clinical trial – it is experimental for a reason – and you need doctors at your fingertips
  • You learn to appreciate the little things and have to find ways to have peace amidst what feels like chaos sometimes. Whether that is a movie, chocolate, a book. And let me tell you about the “clinical trial 15” kind of like the “freshman 15” if you’ve heard of that? No time to exercise, lots of snacking, bad food to make you feel better when you’re stressed….
  • You learn to live without a lot of things for the sake of your child (and most of us already do!) – showers, eating at normal times, decent food (hospital food)And you learn that you really need certain things – we had to buy baby gates for the hotel, toys, supplies.
  • Again, you have to look on the bright side of things and have lots of humor to make it through a clinical trial. You can’t say, “well, when this trial is over…” – it has to become part of your life. You meet wonderful people (valet, playroom, nurses, doctors, families, hotel staff) and you realize that they all have a story, just like we do, and when you pour into their lives, and allow them to pour into yours, it makes the trial a wonderful experience.As with dealing with so many aspects of MPS outside of a clinical trial, I’ve learned it is a lot about perspective.[READ]
  • MPS and this clinical trial – CASE – have taught be a lot about taking time to relish each and every moment with our affected child and with everyone else we love.
  • And in addition:It has brought many wonderful people into our lives that we otherwise would have never met other MPS families others who love our MPS kiddos wonderful doctors and nurses AND this trial has allowed me to spend some particular days with close family and friends who have travelled with me to UNC and given of their time.Particular thanks go to: Family and friends who have travelled with us to UNC (specifically here today are my mom, my aunt, my husband, Kris Klenke) Friends who have spent wonderful times with us while there – Leslie, Jenni Klein, the Mullers, and some other MPS families not able to make it today Family, friends, and our church family at Christ Fellowship in Franklin, TN who have helped care for our other 2 boys, brought meals, and prayed for us. THANK YOU
  • To find out more about clinical trials, rare disease news, and just dealing with MPS, I’ve depended a lot upon:
  • A Clinical Trial: One Family's Experience

    1. 1. One Family’s Experience<br />A Clinical Trial:<br />
    2. 2. Our family<br />Tyson, Melissa, Brock, Chris & Case (MPS II)<br />
    3. 3. Top 10 signs you are in a clinical trial:<br />
    4. 4. #10: By the time you unpack and do laundry, you’re packing to fly out again<br />
    5. 5. #9: You “call ahead” to get the best space in the short stay unit at the hospital<br />
    6. 6. #8: You carry your own power strip with the computer cord, phone charger, and iPad cord already attached<br />
    7. 7. #7: You did your taxes in a hospital room<br />
    8. 8. #6: 4 hours’ sleep a night is really pushing it<br />
    9. 9. #5: Your son has his own frequent flyer number and has already racked up free flights<br />
    10. 10. #4: You have several doctors on speed dial<br />
    11. 11. #3: You consider a “night out” to be getting pizza from the “better” cafeteria and a Netflix movie in the hospital room<br />
    12. 12. #2: You think dry shampoo is one of the best inventions ever<br />
    13. 13. #1: You arrive in a different rental car each time, but the hospital valet still greets you with “Welcome back Mrs. Hogan”<br />The longer I live, the more I realize the impact of attitude on life.Attitude, to me, is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than successes, than what other people think or say or do. It is more important than appearance, giftedness or skill. It will make or break a company... a church... a home.<br />The remarkable thing is we have a choice every day regarding the attitude we will embrace for that day. We cannot change our past… we cannot change the fact that people will act in a certain way. We cannot change<br />the inevitable. The only thing we can do is play on the one string we have, and that is our attitude... I am convinced that life is 10% what happens to me and 90% how I react to it.And so it is with you... we are in charge of our attitudes. - Charles Swindoll<br />
    14. 14. Taking time…<br />
    15. 15. Old and new family<br />
    16. 16. More resources<br />

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