Friday, September 23, 2005

The story of 65 Roses

The Story of 65 Roses

65 Roses® is what some children with CF call their disease because the words are much easier for them to pronounce. Mary G. Weiss became a volunteer for the Cystic Fibrosis Foundation in 1965 after learning that her three little boys had CF. Her duty was to call every civic club, social and service organization seeking financial support for CF research. Mary's 4-year old son, Richard, listened closely to his mother as she made each call. After several calls, Richard came into the room and told his Mom, "I know what you are working for." Mary was dumbstruck because Richard did not know what she was doing, nor did he know that he had cystic fibrosis. With some trepidation, Mary posed the question, "What am I working for, Richard?" "You are working for 65 Roses," he answered so sweetly. Mary was speechless. She went over to him and tenderly pressed his body to hers. He could not see the tears running down Mary's cheeks as she stammered, "Yes Richard, I'm working for 65 Roses."
Since 1965, the term "65 Roses" has been used by children of all ages to describe their disease. But, making it easier to say, does not make CF any easier to live with. The "65 Roses" story has captured the hearts and emotions of all who have heard it. The rose, appropriately the ancient symbol of love, has become a symbol of the Cystic Fibrosis Foundation.

"65 Roses® " is a registered trademark of the Cystic Fibrosis Foundation.

Wednesday, September 21, 2005

Come party....and dance with Annika

Annika's Dance
October 29th
5:30PM Cocktails Dinner 6:00 Pm
Harrow Agricultural Building (near the arena)
Dinner and DanceTickets: $25.00 each Children $10.00 (10 and under)
Dinner includes salad, roastbeef, chicken, vegetable, potato , dessert and coffee/tea.
Dance your pants off after!!!!!
Full Bar available (not included with ticket cost)
Silent auction
This is a fundraising event for The Hasson family. On June 24th, 2005 , Annika was diagnosed with cystic fibrosis. Three weeks later, her mother Kimberly was also diagnosed with cf. The Hasson family needs help to replace carpeting with hardwood flooring, air ducts need to be cleaned, and funds need to be raised for hospital visits and daily expenses. We are focusing on education. Cystic Fibrosis effects 1 in 2500 families. It takes both parents to have the cf gene, to pass it on to their child. Many parents are not aware that they carry the gene. 1 in 20 people carry the cf gene. Cystic fibrosis is the number one killer of caucasion children.
To purchase a ticket call St. Andrews Church at 738-4362 or
Kimberly Hasson 738-9152

Come out and celebrate life with us.
Give the breath of life. Support Cystic Fibrosis!

Wednesday, September 14, 2005

The big day in the big city....

Monday September 12th, 2005

A whirlwind of a day starting with 2 sweat tests. Yep two. Toronto Sick Kids wanted to see if the results from the newer sweat test and the old method would be different.
Lynda from the respitory unit came and performed the Nasal Potential Difference (NPD) Measurements. ( for an explanation of this test)
I then went on to St. Michael's Hospital for a CT scan, bloodwork, a pulmonary function test(in which I blew 121%....wink, wink!) What a crazy day
At about 2 PM I got to meet with Dr. Liz Tullis. Wow, what a great doctor. Her bedside manner is the best I have seen. What a sweet lady.
She explained that by some standards I don't have CF, but by clinical and personal standards and history I do????
The way she explained it was our bodies are like encyclopedias. Each page represents a function in our body. When someone has a cf mutation, it effects how the encyclopedia is read. For example, my daughter's double DF508 would be like tearing out 2 dozen pages throughout the can't receive the information properly (or your body can't function normally)
Where my mutations, as mild as they are to several words to a paragraph missing from the encyclopedia. Easier to piece together and read.
So Toronto wants to monitor me 2x a year. They want me to meet their dietician, therapist, and cf team, so if in the future I need them, they will be there for me.
Right now, my lungs are clear, and I feel good. No treatment needed or prescribed.
I still have to be careful. Watch that colds don't go to my lungs, etc. There are not many of my genetic makeups in studies because most symptoms are mild and people don't know they have "cf". I was only dx because of Annika. I guess you can say I will be a research guinea

Annika's Big Day

Well my little monkey weighed in at 12 1/4 lbs! She has gained !!!!
She is starting to have rolls. Toronto was happy with her weight gain, and said she looked healthy. I think they were surprised by her motor skills. The little bum likes standing, jumping and when laying down arching her back in the shape of a C. She turned 6 months on this visit.
We had her started on Zantac for reflux for a few months.....I am tired of wearing
Louise also sent her home with a script for ventilin and a neb machine "just in case" With the cold and flu season coming.
Little did we know we would be using it today.
Annika started coughing through the night last night, and hasn't stopped since. I am sure it is just a cold. She is still full of piss and vinegar!
The ventilin is helping right away. (She hates having the mask put to her face...sassy girl)
We are still waiting on her culture results to see if she is growing anything or not. I will update ASAP.

Monday, September 05, 2005

Does life go on? I guess so!

Well this past weekend was insane. Our son Parker turned three , and every year we have friends and family over to celebrate. After stuffing our faces , we all venture over to The Harrow Fair. (Which for those who have never been there, it is an old time fair with vendors, rides and homemade pies. Barns full of animals, and lots of people)
We took this opportunity to spread the word about Annika's Dance...The fundraiser supported by the three local Anglican church's...St. Andrews, Christ Church and St. Albuns. This whole weekend, I ventured to the fair with Annika in the sling and passed out flyers to perfect strangers. What an odd feeling.
When doing something like this you are mixed with many emotions. Pride for your precious child, fear of rejection, anger of ignorance, warmth of acceptance, guilt for asking for help(because you know there are people worst off in the world) You are smiling one minute, and on the border of crying the next.
So many people are willing to help, and there are just as many people there to frown on your endeavors.
Parker's birthday was fun, the fair rewarding for children's eyes. Annika bounced non-stop at the sights and sounds. Parker exhausted his Uncle Dennis

Sunday David and Dennis went on The Ride for Cf- Poker run. Dennis won a $500 gift certificate for raising the most sponsor dollars, almost $700.00. He is an Uncle with a passion.....His partner Angie helped out with sponsors( a lot). Those two are our support ( along with many others). Sometimes I think they love our kids as if they were their own, and for that I love them more than words could say. The poker run raised over $11,000.00 for Cf research. I am proud of both men for participating. So I guess life goes one....we still have birthday parties, we still go to fairs ( and eat too much cotton candy) and we still ride our bikes. Funny how life still incorporates CF into those little things........