I aplogize to those of you that have received this message thru multiple channels. I want to leave no stone unturned!
This is a "shameless" plea for you to support Alyssa this weekend as she walks in the National Kidney Foundation's Kidney Walk. This event will be held at the Seneca Park Zoo on Saturday and all funds raised will go the the Rochester Area Kidney Foundation to aid with awareness, research and in assisting those that require services, but are unable to afford them. Alyssa believes strongly in this group and what it does for those with kidney disease. She has assembled the second biggest group of walkers and is listed as third for total dollars raised. With your help, we may be able to push her up to #1!
If you would like to make a pledge, please click on the following link, which will take you directly to the Walk site. Pledges made by 9/22/09 count toward Alyssa's total. Pledges after the 22nd still go to the grand total of the walk. http://walk.kidney.org/site/TR?px=1368054&fr_id=1730&pg=personal
Again, thanks for the support shown Alyssa throughout this awful disease that she has been forced to battle.
Dave
Monday, September 21, 2009
Tuesday, September 15, 2009
What Alyssa Did on Summer Vacation
Even though I'm a little old to return to school this fall, Alyssa has given me a homework assignment (what else is new)...write an essay for her blog that covers what she did over the summer and to tell you all about her involvement with the upcoming National Kidney Foundation Walk. I'll break this down into two parts - Health and Fun. Also, since there are new developments on the transplant front, I will be providing a weekly update each Monday evening for the foreseeable future. We all so appreciate the support you have shown Alyssa and our family. We could never have gotten this far without it.
Health:
For the most part, it has been a good summer for Alyssa. She has gone through some peaks and valleys with her blood work - hematocrit and platelet counts continue to take unexplained dips - but not enough to warrant a return to plasmaphersis treatments or require any blood transfusions. She has however needed to have blood draws pretty much on a weekly basis. The best news though is that there has been no sign of any HUS activity!
Her Peroteneal Dialysis has gone extremely well. She needs to hook-up to her machine each night for a nine hour treatment, but has adapted so well to the process that she is able to travel pretty much at will without any issues. PD has certainly made her life more manageable versus what she went through with hemodialysis.
We are well into the kidney transplant process at Strong Memorial. Alyssa has met with all the members of her transplant team and has begun the testing and compatibility process. The doctors have decided that with her history of HUS that they would prefer to see her receive her kidney from a live donor rather than a cadaver kidney. Assuming that we get final approval from her doctors to proceed, the transplant process will be front and center for Alyssa and all of us for the foreseeable future.
Fun:
On Sunday, July 19th, the seats were almost empty; the food venders were all closed; most of the cars in the parking lots were there to see Abby Wambach score her 100th goal down the street at Marina Stadium; and the Red Wings were out of town...but, it was a perfect day at Frontier Field for over 150 of Alyssa's most ardent supporters!
So how did we all end up here?...When Alyssa was at her worst in January and February, we promised her that if she got through this, we'd throw a party for her and her friends that she would never forget. Thankfully, Alyssa doesn't remember much of what happened during that awful period, but of course she did remember our promise. So the planning began. At first we were going to hold it at our home; we picked a date, Sunday, June 21 and Alyssa went so far as to send out Facebook invitations to her friends...but in true Deffenbaugh fashion, it was only then that we then discovered that we had chosen to hold her party on Father's Day. We know that Alyssa has a strong following, but we didn't want to go head-to-head with all of the fathers out there, so it was back to the drawing board. By this time, our list of invitees had almost doubled from the initial one, so a new venue had to be found. Those familiar with the Deff's know that we are huge fans of the game of baseball. So what better place to celebrate than Frontier Field, home of Rochester's AAA baseball team, the Red Wings. July 19th was selected after a thorough review of the calendar.
The appeal of Frontier Field has always been the baseball field (although my family spends a great deal of time at the food venders) so we used the field to host a variety of activities. We set-up a temporary softball field, placing home plate just behind second base. This configuration gave the better hitters a chance to knock one out the park, which several did. "Kids" from 4 to 40+ took part, providing us with some truly "Good, Bad & Ugly" moments. No score was kept, but everyone got to hit a few times and had the chance to run around on the field. The field also played host to numerous games of Kan-Jam, an informal home-run derby and impromptu Athena reunions. Following a picnic dinner, everyone went down on the field to watch a couple of "Alyssa videos" that were lovingly created by some of her friends and played on the big digital scoreboard. It was a great day for the Deff's and all of Alyssa's special guests!
Dan - that old saying that you'll find someone special when you're not looking sure rang true for Alyssa this summer. She was just happy to be alive and enjoying time with her family and many of her friends who had just recently returned home from college. But then along came Dan Horowitz, who had been an acquaintance for a long time, but not much more. Some how everything just clicked and fell into place. They have spent most of the summer together, traveling to Rhode Island and the Hampton's to visit with his family; spending time with us in the 1000 Islands and best of all, spending time at home playing cards and visiting with friends. They are really enjoying each others company and support! Our family has enjoyed getting to know him and his family. He treats her with the utmost of respect and has helped put smiles on her face that had been missing since she became ill. He has been a great fit with the family and Alyssa has really enjoyed spending time with his family as well.
Alyssa has been a huge Taylor Swift fan for several years now. When she heard that Taylor would be appearing in Rochester, the pressure was on to get her tickets. Thanks to good friends Jim LeBeau and Mike Davis, Alyssa and good friend Steph got their seats and to their great surprise, they were in the front row, right next to the stage! Up close and personal took on a whole new meaning for her! Oh, and the headliner wasn't bad either...Keith Urban.
And finally, what summer would be complete for Alyssa without a trip to see the Red Sox in Fenway Park. We had one last big surprise for her...seats on top of Fenway's famed Green Monster. It was a beautiful day, the Red Sox won 6-0 and Dad and Kyle were able to share the thrill of the Green Monster right along with Alyssa. The Yankees may be a better team this year, but we still love our Sox!
Alyssa is proud to be walking in the National Kidney's Foundation Walk next Saturday, Sept. 26th at the zoo. She has discovered from all too personal experience the value of her kidneys and is happy to support the cause. None of us knew just how important our kidneys are until we watched Alyssa go through all that she has with dialysis, nausea, blood pressure issues and shots to help her produce new blood--all of which her kidneys had controlled before that fateful day! We know that many young as well as older people suffer the terrible consequences that go with loss of kidney function and hope to help raise public awareness of not only these issues but all that transplantation involves The "End the Wait" campaign stresses the fact that the extremely expensive anti-rejection drugs (which unfortunately cause their own set of health issues) are often not even covered by insurance, and only by Medicare for three years when transplant recipients have to be on them the rest of their lives. Alyssa has formed one of the largest walk teams in Rochester!!! Please visit the Kidney Foundation Walk's Website and know that we appreciate any support you can give including walking with us, sponsoring our walk or even just spreading the word!! Thanks for all you have already done in supporting us in prayer and friendship.
dd
Health:
For the most part, it has been a good summer for Alyssa. She has gone through some peaks and valleys with her blood work - hematocrit and platelet counts continue to take unexplained dips - but not enough to warrant a return to plasmaphersis treatments or require any blood transfusions. She has however needed to have blood draws pretty much on a weekly basis. The best news though is that there has been no sign of any HUS activity!
Her Peroteneal Dialysis has gone extremely well. She needs to hook-up to her machine each night for a nine hour treatment, but has adapted so well to the process that she is able to travel pretty much at will without any issues. PD has certainly made her life more manageable versus what she went through with hemodialysis.
We are well into the kidney transplant process at Strong Memorial. Alyssa has met with all the members of her transplant team and has begun the testing and compatibility process. The doctors have decided that with her history of HUS that they would prefer to see her receive her kidney from a live donor rather than a cadaver kidney. Assuming that we get final approval from her doctors to proceed, the transplant process will be front and center for Alyssa and all of us for the foreseeable future.
Fun:
On Sunday, July 19th, the seats were almost empty; the food venders were all closed; most of the cars in the parking lots were there to see Abby Wambach score her 100th goal down the street at Marina Stadium; and the Red Wings were out of town...but, it was a perfect day at Frontier Field for over 150 of Alyssa's most ardent supporters!
So how did we all end up here?...When Alyssa was at her worst in January and February, we promised her that if she got through this, we'd throw a party for her and her friends that she would never forget. Thankfully, Alyssa doesn't remember much of what happened during that awful period, but of course she did remember our promise. So the planning began. At first we were going to hold it at our home; we picked a date, Sunday, June 21 and Alyssa went so far as to send out Facebook invitations to her friends...but in true Deffenbaugh fashion, it was only then that we then discovered that we had chosen to hold her party on Father's Day. We know that Alyssa has a strong following, but we didn't want to go head-to-head with all of the fathers out there, so it was back to the drawing board. By this time, our list of invitees had almost doubled from the initial one, so a new venue had to be found. Those familiar with the Deff's know that we are huge fans of the game of baseball. So what better place to celebrate than Frontier Field, home of Rochester's AAA baseball team, the Red Wings. July 19th was selected after a thorough review of the calendar.
The appeal of Frontier Field has always been the baseball field (although my family spends a great deal of time at the food venders) so we used the field to host a variety of activities. We set-up a temporary softball field, placing home plate just behind second base. This configuration gave the better hitters a chance to knock one out the park, which several did. "Kids" from 4 to 40+ took part, providing us with some truly "Good, Bad & Ugly" moments. No score was kept, but everyone got to hit a few times and had the chance to run around on the field. The field also played host to numerous games of Kan-Jam, an informal home-run derby and impromptu Athena reunions. Following a picnic dinner, everyone went down on the field to watch a couple of "Alyssa videos" that were lovingly created by some of her friends and played on the big digital scoreboard. It was a great day for the Deff's and all of Alyssa's special guests!
Dan - that old saying that you'll find someone special when you're not looking sure rang true for Alyssa this summer. She was just happy to be alive and enjoying time with her family and many of her friends who had just recently returned home from college. But then along came Dan Horowitz, who had been an acquaintance for a long time, but not much more. Some how everything just clicked and fell into place. They have spent most of the summer together, traveling to Rhode Island and the Hampton's to visit with his family; spending time with us in the 1000 Islands and best of all, spending time at home playing cards and visiting with friends. They are really enjoying each others company and support! Our family has enjoyed getting to know him and his family. He treats her with the utmost of respect and has helped put smiles on her face that had been missing since she became ill. He has been a great fit with the family and Alyssa has really enjoyed spending time with his family as well.
Alyssa has been a huge Taylor Swift fan for several years now. When she heard that Taylor would be appearing in Rochester, the pressure was on to get her tickets. Thanks to good friends Jim LeBeau and Mike Davis, Alyssa and good friend Steph got their seats and to their great surprise, they were in the front row, right next to the stage! Up close and personal took on a whole new meaning for her! Oh, and the headliner wasn't bad either...Keith Urban.
And finally, what summer would be complete for Alyssa without a trip to see the Red Sox in Fenway Park. We had one last big surprise for her...seats on top of Fenway's famed Green Monster. It was a beautiful day, the Red Sox won 6-0 and Dad and Kyle were able to share the thrill of the Green Monster right along with Alyssa. The Yankees may be a better team this year, but we still love our Sox!
Alyssa is proud to be walking in the National Kidney's Foundation Walk next Saturday, Sept. 26th at the zoo. She has discovered from all too personal experience the value of her kidneys and is happy to support the cause. None of us knew just how important our kidneys are until we watched Alyssa go through all that she has with dialysis, nausea, blood pressure issues and shots to help her produce new blood--all of which her kidneys had controlled before that fateful day! We know that many young as well as older people suffer the terrible consequences that go with loss of kidney function and hope to help raise public awareness of not only these issues but all that transplantation involves The "End the Wait" campaign stresses the fact that the extremely expensive anti-rejection drugs (which unfortunately cause their own set of health issues) are often not even covered by insurance, and only by Medicare for three years when transplant recipients have to be on them the rest of their lives. Alyssa has formed one of the largest walk teams in Rochester!!! Please visit the Kidney Foundation Walk's Website and know that we appreciate any support you can give including walking with us, sponsoring our walk or even just spreading the word!! Thanks for all you have already done in supporting us in prayer and friendship.
dd
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