November has not exactly been Jenny’s favorite month. On Election Day, Jenny took a nasty tumble onto the floor during a transfer between her bed and wheelchair. She landed hard and broke her right shoulder. Her arm is in a sling, and doctors say we can expect the shoulder to heal in a few weeks. Meanwhile, every change of position is more difficult and uncomfortable for Jenny.
Saturday was even tougher. A mishap with her sip-and-puff breathing apparatus left Jenny in need of mouth-to-mouth resuscitation, which her dad performed successfully. Jenny had to go to the emergency room for a chest X-ray (which confirmed that she did not suffer any injury from the CPR efforts) and for observation to be sure that her breathing was back on track. After a few hours, she was allowed to return home.
Once again, though, Jenny showed her mettle. She promptly resumed watching the Olsen twins DVD (“When in Rome”) that had been in progress before her morning went awry, then devoured generous helpings of some of her favorite foods (stuffing and chocolate milk) while cracking jokes with the family and friends gathered around her. Now, Jenny is looking forward to Thanksgiving decorations for her room (she has requested an inflatable turkey!) and the release of the movie Twilight, based on one of her favorite Stephanie Meyer books.
Here’s hoping that the rest of November lives up to Jenny’s happiest expectations.
Showing posts with label teenage girls. Show all posts
Showing posts with label teenage girls. Show all posts
Monday, November 10, 2008
Wednesday, August 13, 2008
Sisterhood in Multiple Guises
Jenny continues to have good and bad days. Yesterday, she went to see “The Sisterhood of the Traveling Pants 2” to celebrate a day with lower than normal nausea. On Monday, one of her doctors said Jenny seemed to have stabilized, to which her dad responded that, at this rate of reduced deterioration, Jenny may live to be 100!
So, let’s all keep hope. Jenny’s doctors are trying a number of experimental medications (e.g., hydroxyurea, which is in clinical trials) and have ordered further tests to see if they can nail down Jenny’s ailment (including a pet scan today, which led an amused Jenny to remark: “I guess I am officially a pet now!”). They are not giving up the fight, and neither is she.
Ever since Jenny’s blog started, highlighting the need for comparables, the response has been exponential. Our first clear comparable was Alex, who will turn 15 on August 22nd and whose story we talked of last time.
Over the past 6 weeks, we have found several more close comparables from all around the world, most of whom have been diagnosed as having a rare, rapidly progressing form of juvenile ALS (aka “Lou Gehrig’s disease”). Some, like Haley, are still hoping for a cure. Haley’s story is similar to that of Alex and Jenny. Her first symptoms started at the age of 16 (fall 2007), and by May of this year, Haley was wheelchair bound.
Other families are dealing with the fact that their daughters did not survive to see a cure: Emily (onset age 12: died 18 months later with her autopsy showing upper and lower motor neuron degeneration, consistent with ALS), Janine (onset spring 2000; died December 2001), Tanya (diagnosed at 18 in Feb 2002; died 5 months later on July 11, 2002) and Sarah Beth (diagnosed summer 2007; died April 10, 2008 at age 22). Our hearts go out to these families, as well as our thanks for being so generous in sharing information about their daughters’ experiences with this deadly disease.
Clearly, there are more children out there who have suffered from, or are suffering from, this mysterious and aggressive neurological disease. Identifying them is key to finding a cure for Jenny, and preventing the disease in others.
The response to our request for alternative treatments also has been overwhelming. Thank you all so very much. We are not actively following up on all of these suggestions at the moment as Jenny’s doctors feel that she should try one thing at a time. However, we have all of your offers of help and advice, and we really appreciate it.
Keep Jenny in your thoughts and send her all your good wishes telepathically!
So, let’s all keep hope. Jenny’s doctors are trying a number of experimental medications (e.g., hydroxyurea, which is in clinical trials) and have ordered further tests to see if they can nail down Jenny’s ailment (including a pet scan today, which led an amused Jenny to remark: “I guess I am officially a pet now!”). They are not giving up the fight, and neither is she.
Ever since Jenny’s blog started, highlighting the need for comparables, the response has been exponential. Our first clear comparable was Alex, who will turn 15 on August 22nd and whose story we talked of last time.
Over the past 6 weeks, we have found several more close comparables from all around the world, most of whom have been diagnosed as having a rare, rapidly progressing form of juvenile ALS (aka “Lou Gehrig’s disease”). Some, like Haley, are still hoping for a cure. Haley’s story is similar to that of Alex and Jenny. Her first symptoms started at the age of 16 (fall 2007), and by May of this year, Haley was wheelchair bound.
Other families are dealing with the fact that their daughters did not survive to see a cure: Emily (onset age 12: died 18 months later with her autopsy showing upper and lower motor neuron degeneration, consistent with ALS), Janine (onset spring 2000; died December 2001), Tanya (diagnosed at 18 in Feb 2002; died 5 months later on July 11, 2002) and Sarah Beth (diagnosed summer 2007; died April 10, 2008 at age 22). Our hearts go out to these families, as well as our thanks for being so generous in sharing information about their daughters’ experiences with this deadly disease.
Clearly, there are more children out there who have suffered from, or are suffering from, this mysterious and aggressive neurological disease. Identifying them is key to finding a cure for Jenny, and preventing the disease in others.
The response to our request for alternative treatments also has been overwhelming. Thank you all so very much. We are not actively following up on all of these suggestions at the moment as Jenny’s doctors feel that she should try one thing at a time. However, we have all of your offers of help and advice, and we really appreciate it.
Keep Jenny in your thoughts and send her all your good wishes telepathically!
Friday, July 11, 2008
The Great Race
Formula 1 auto races such as the Monaco Grand Prix have both a finish line and a time limit – if no one crosses the finish line within the allowed maximum time, the race is over.
In order to cross the finish line before reaching the time limit in the race to find a cure for Jenny, WE NEED YOUR HELP NOW.
Please scroll down to the blue side bar: "Am I a comparable?" This list outlines the characteristics that Jenny's doctors consider most important to identify other cases that may hold the clue to diagnosing her mysterious ailment - and finding the right treatment to reverse her frighteningly fast decline.
If you know of a potential comparable, please contact us right away at jenjensfamily@gmail.com.
But, even if you don’t know of a possible comparable case, you can still join Team Jenny and accelerate our race for a cure by getting the message about the search for comparables to as many people as possible, especially doctors who might have seen such a patient. Ask everyone to send the link to others, and seek their assistance as well. Together, we can work miracles.
Here is a suggested message for you to use in contacting others about the race to cure Jenny:
Hi,
Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine (her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness), but doctors are not sure whether Gardasil played any role in Jenny’s illness.
We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/). Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?
The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding an effective treatment.
Time is of the essence because Jenny is now a quadriplegic and is struggling to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.
In order to cross the finish line before reaching the time limit in the race to find a cure for Jenny, WE NEED YOUR HELP NOW.
Please scroll down to the blue side bar: "Am I a comparable?" This list outlines the characteristics that Jenny's doctors consider most important to identify other cases that may hold the clue to diagnosing her mysterious ailment - and finding the right treatment to reverse her frighteningly fast decline.
If you know of a potential comparable, please contact us right away at jenjensfamily@gmail.com.
But, even if you don’t know of a possible comparable case, you can still join Team Jenny and accelerate our race for a cure by getting the message about the search for comparables to as many people as possible, especially doctors who might have seen such a patient. Ask everyone to send the link to others, and seek their assistance as well. Together, we can work miracles.
Here is a suggested message for you to use in contacting others about the race to cure Jenny:
Hi,
Jenny, a 14-year old girl, was stricken suddenly with a debilitating illness a little over one year ago.
If you click through to the blog (http://jenjensfamily.blogspot.com/), you’ll see that some doctors suspect she has a rare form of ALS. There is also a possible link to the HPV vaccine (her third Gardasil injection occurred not long before her family began noticing the first symptoms of her illness), but doctors are not sure whether Gardasil played any role in Jenny’s illness.
We are desperately looking for two things:
1) Other cases that might be comparable to Jenny’s. Please read the sidebar in blue (“Am I a Comparable?” http://jenjensfamily.blogspot.com/). Do you know of anyone who might fit the description?
2) Any doctors you know who might have come across cases like Jenny’s in their practice. Can you help get the word to doctors around the world?
The cause of Jenny’s illness remains a medical mystery. Finding relevant comparables – fast – could help to solve that mystery and thus provide a crucial clue to finding an effective treatment.
Time is of the essence because Jenny is now a quadriplegic and is struggling to breathe. Therefore, Jenny’s family appeals to you to bring any potential comparables to their notice by sending an e-mail to jenjensfamily@gmail.com.
Subscribe to:
Comments (Atom)
