Dear Family & Friends,
I would like to take a minute to invite each and every one of you to the Olympia Cystic Fibrosis (CF) walk on May 22nd` . As most of you know, CF is an illness very close to our hearts as our one and only daughter, Lucia Grace, deals with it everyday. Here is a brief explanation of CF from the foundation’s website:
Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:
clogs the lungs and leads to life-threatening lung infections; and
obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food.
In the 1950s, few children with cystic fibrosis lived to attend elementary school. Today, advances in research and medical treatments have further enhanced and extended life for children and adults with CF. Many people with the disease can now expect to live into their 30s, 40s and beyond. – www.cff.org
Call me crazy, but I live every single day as an optimist. Even though this is an incredibly scary, life shortening and at times pain inducing disease, the progress that has been made (great strides if you will) is absolutely remarkable. I feel oddly blessed to have an undeniable passion to learn more about something so profound – and here’s an example of why. There are over 400 genetic mutations that cause CF. 60 of these are tested for on the standard CF DNA screen (which Lucy had in her first few days of life, results came to us at 6 days old), and the remaining 300+ can be identified on a highly advanced Ambry full genetic panel. Lucy has a CF gene (mutation) from Randy (G551D) & one from me (N1303K), because we are both carriers. These are both relatively rare mutations, the G551D mutation is the one we are mainly focused on because there is an important med on the horizon aimed at treating this mutation. Only 3-4% of all CF patients have this G551D mutation, the vast majority have delta F508. The medication we are closely following go through the CF drug development pipeline was created by Vertex Pharmaceuticals with funding from the Cystic Fibrosis Foundation; it is called VX-770. On a cellular level specific to G551D, this medication is able to essentially correct the salt imbalance that is the root problem of CF. The effect is no more “dehydrated”/thick mucous clogging up parts of the body, most importantly the lungs and digestive system – it is basically a cure as it is able to eliminate symptoms. We have known about this med since Lucy was diagnosed and have been following it closely as it goes through the different phases towards final FDA approval. It looks very promising and about 2 years away from being within our reach. The ultimate goal is for researcher to also apply this knowledge to other mutations, it is very exciting!
Over the past year, I have been lucky enough to meet two amazing adults with CF. The first is a 50 year old female physician with CF who spoke at a parent education day at UW, her topic was the importance of physical exercise in the life of a CF patient – she is incredibly vibrant and did a fantastic job. The other amazing individual is a 54 year old male, former computer wiz during the dot com craze, now retired & living happily in the Seattle area, working hard everyday to battle his CF. Seeing these very positive, high achieving, life loving & OLD (I say that with every positive meaning of the word!) adults with CF, I can’t help but realize the potential Lucy has for a long healthy life simply because of the era which she was born into.
So, how does the medical/genetics talk relate to the Olympia Great Strides CF Walk? Great Strides is the CF Foundation’s largest national fundraiser and it provides the money necessary to fund incredibly important research including the development of the med mentioned above and others like the inhaled antibiotics Lucy has taken this year.
Although we would love to see zillions of dollars raised, Randy and I would most like to see awareness increased and invite people to learn more about our reasons for being so optimistic about Lucy’s future with CF. The Olympia walk is a lot of fun, last year it fell on an absolutely beautiful sunny spring day and we had 75 walkers in bright yellow TEAM LUCY tshirts. I was amazed by the incredible support we received from friends and family!
To register for the walk, go to http://www.cff.org/, then register for Great Strides, select WA state, then Olympia & then Team Lucy (the shortcut is http://www.cff.org/great_strides/christywebster ). Technically the walk is free, but donations are encouraged. There is a live band, BBQ & fun projects for the kids to do as well. The full walk is 4.5 miles although there is a beautiful 1 mile option around Capitol Lake itself.
Thank you to all of our much loved friends and family, your support means the world to us!
Love,
Christy, Randy & Lucy Webster
websterhome@comcast.net
Saturday, April 17, 2010
Wednesday, April 7, 2010
19 month Lucy Update & my friend Karen
Hello to everyone!
Good news on the Lucy front, things are going very well. We spent nearly 4 hours at the CF Clinic yesterday for her quarterly appointment, always such a long day. It was a nice treat to have Randy's mom go with us, Lucy has so much fun with her and Susan had some good questions for Dr. Ricker. I've made a point of taking a few of our family members with us to appointments because it's such a great way of getting insight into Lucy's CF care. We are so lucky to have such a big support system of family members and friends!
So, the good news is that after Lucy's month of the expensive inhaled TOBI antibiotic, she had a follow up throat culture that came back clean! We were so happy! Yesterday Dr. Ricker did another follow up culture that we will get back next week, praying it stays clean. In an effort to be extra cautious and eliminate any lingering bacteria that may be hiding in the lungs, he opted to have Lucy begin another month of inhaled TOBI (tobramycin through at nebulizer). Thankfully, there is a new program to help with the cost of this medication and it is much more streamlined to access the assistance than when we went through it a few months ago.
As for her growth & development, she's our little beanpole these days! So long & she's lost the baby fat look. Lucy was 26.6 lbs and 35 inches which put her in the 78% for weight & 98% for length but unfortunately only the 38% (or 35? I can't remember) for her weight for length ratio. The weight for length ratio is what they follow the closest and they would really like to see that increase 50% by age 2. As a result, I am doing everything I can to add fat and healthy calories to Lucy's diet. (And yes, this is a bit counterproductive when I'd like to lose 10lbs =) I smile each time they recommend adding olive oil to her food - thankfully we've got connections (www.sottovoce.com).
This was the first visit in a year or so that the Child Life Specialist came in to visit with us. There were two and they were both wonderful. The Child Life Specialists do many different things depending upon which part of the hospital or clinic they're focused on. But, in the case of the CF clinic, they work on helping to keep the kids entertained during long clinic appointments and recommend advice on doing the various respiratory treatments at home. They brought Lucy all kinds of little stickers, coloring crayons, etc to take home - all donated by the Tacoma Orthopaedic Guild. Even though I come with a great big bag of tricks to these appointments, Lucy of course always loves to see new things. The girls were so great, they walked right in with their yellow gowns (all of the care providers wear cover gowns & gloves at the CF clinic to prevent spreading infection from one CF'er to another) and sat on the floor instead of the chairs. It lightened the mood so much and Lucy loved them being right at her level. I think Dr. Ricker was a bit surprised when he walked in & we were all on the floor with crayons and stickers everywhere, but that's okay. =)
As for her follow up, we will be heading back in to the clinic just for a weight check and annual labs next month. She will not have a full clinic visit for another three months. This of course could change if her culture results come back worrisome or if she becomes ill (knock on wood!), but we continue to be very optimistic.
I am so proud of our little Lucy bug, she is absolutely amazing. Her patience as a toddler in a tiny exam room for nearly 4 hours blew me away! She has adjusted just great to taking 3 enzyme capsules with every feeding or snack (an increase from the 2 we've been on for a long time now) and she's the world's biggest champ wearing her vest for 30 minutes twice a day.
Thank you for everyone's support and prayers for Miss Lucy. I have another friend on my mind tonight that I would love each of you to add to your prayer list. It is my coworker, Karen Wilson from the TG ICN. Karen has worked there for many years as an LPN, she is a wonderful nurse and a fantastic friend. Last year, Karen was a huge help with TEAM LUCY at the Olympia Great Strides Walk even though she was going through treatments for recurrent breast cancer. Karen's cancer is back I believe for the 3rd or 4th time, now in the bone and quite serious, and she is fighting a very tough battle. Karen is single and at work we are collecting to help her have money to cover the basics and those with extra sick time are able to donate hours to help her keep her health insurance as she's too sick to work the necessary time. I ask you to pray for Karen's strength and that God is able to open doors to help her while she's fighting so hard. As soon as I posted info onto Facebook about the Olympia CF Walk, Karen was the first person to respond. She was asking not to walk because it's too much for her while going through treatments but instead to be involved organizing the tshirts for the walkers. Karen gives and gives and gives, she has a heart of gold and I feel so lucky that she is my friend. Think of her tonight, she's got a fantastic sense of humor, she's a kick to be around, she loves good food and great drinks, and right now she needs all the prayers she can get. God is powerful, I know He listens when we pray and I'm praying for Karen's health and strength tonight. Love you Karen!
Good news on the Lucy front, things are going very well. We spent nearly 4 hours at the CF Clinic yesterday for her quarterly appointment, always such a long day. It was a nice treat to have Randy's mom go with us, Lucy has so much fun with her and Susan had some good questions for Dr. Ricker. I've made a point of taking a few of our family members with us to appointments because it's such a great way of getting insight into Lucy's CF care. We are so lucky to have such a big support system of family members and friends!
So, the good news is that after Lucy's month of the expensive inhaled TOBI antibiotic, she had a follow up throat culture that came back clean! We were so happy! Yesterday Dr. Ricker did another follow up culture that we will get back next week, praying it stays clean. In an effort to be extra cautious and eliminate any lingering bacteria that may be hiding in the lungs, he opted to have Lucy begin another month of inhaled TOBI (tobramycin through at nebulizer). Thankfully, there is a new program to help with the cost of this medication and it is much more streamlined to access the assistance than when we went through it a few months ago.
As for her growth & development, she's our little beanpole these days! So long & she's lost the baby fat look. Lucy was 26.6 lbs and 35 inches which put her in the 78% for weight & 98% for length but unfortunately only the 38% (or 35? I can't remember) for her weight for length ratio. The weight for length ratio is what they follow the closest and they would really like to see that increase 50% by age 2. As a result, I am doing everything I can to add fat and healthy calories to Lucy's diet. (And yes, this is a bit counterproductive when I'd like to lose 10lbs =) I smile each time they recommend adding olive oil to her food - thankfully we've got connections (www.sottovoce.com).
This was the first visit in a year or so that the Child Life Specialist came in to visit with us. There were two and they were both wonderful. The Child Life Specialists do many different things depending upon which part of the hospital or clinic they're focused on. But, in the case of the CF clinic, they work on helping to keep the kids entertained during long clinic appointments and recommend advice on doing the various respiratory treatments at home. They brought Lucy all kinds of little stickers, coloring crayons, etc to take home - all donated by the Tacoma Orthopaedic Guild. Even though I come with a great big bag of tricks to these appointments, Lucy of course always loves to see new things. The girls were so great, they walked right in with their yellow gowns (all of the care providers wear cover gowns & gloves at the CF clinic to prevent spreading infection from one CF'er to another) and sat on the floor instead of the chairs. It lightened the mood so much and Lucy loved them being right at her level. I think Dr. Ricker was a bit surprised when he walked in & we were all on the floor with crayons and stickers everywhere, but that's okay. =)
As for her follow up, we will be heading back in to the clinic just for a weight check and annual labs next month. She will not have a full clinic visit for another three months. This of course could change if her culture results come back worrisome or if she becomes ill (knock on wood!), but we continue to be very optimistic.
I am so proud of our little Lucy bug, she is absolutely amazing. Her patience as a toddler in a tiny exam room for nearly 4 hours blew me away! She has adjusted just great to taking 3 enzyme capsules with every feeding or snack (an increase from the 2 we've been on for a long time now) and she's the world's biggest champ wearing her vest for 30 minutes twice a day.
Thank you for everyone's support and prayers for Miss Lucy. I have another friend on my mind tonight that I would love each of you to add to your prayer list. It is my coworker, Karen Wilson from the TG ICN. Karen has worked there for many years as an LPN, she is a wonderful nurse and a fantastic friend. Last year, Karen was a huge help with TEAM LUCY at the Olympia Great Strides Walk even though she was going through treatments for recurrent breast cancer. Karen's cancer is back I believe for the 3rd or 4th time, now in the bone and quite serious, and she is fighting a very tough battle. Karen is single and at work we are collecting to help her have money to cover the basics and those with extra sick time are able to donate hours to help her keep her health insurance as she's too sick to work the necessary time. I ask you to pray for Karen's strength and that God is able to open doors to help her while she's fighting so hard. As soon as I posted info onto Facebook about the Olympia CF Walk, Karen was the first person to respond. She was asking not to walk because it's too much for her while going through treatments but instead to be involved organizing the tshirts for the walkers. Karen gives and gives and gives, she has a heart of gold and I feel so lucky that she is my friend. Think of her tonight, she's got a fantastic sense of humor, she's a kick to be around, she loves good food and great drinks, and right now she needs all the prayers she can get. God is powerful, I know He listens when we pray and I'm praying for Karen's health and strength tonight. Love you Karen!
Thursday, April 1, 2010
A visit from Stacy & the puppies!
Such a treat to get a phone call from my best college buddy, Stacy saying that she was in the area! Lucy & I loved having a few hour visit from Stacy & the adorable Kody (short for Kodiak) & Kenai, their Golden Retrievers! Since losing our Golden named Blue a few years ago, we miss these doggies more than ever! Randy was so sad he missed the puppy play time! Miss Lucy was in heaven with these big adorable furry friends! We are so excited for Stacy & Johannes (her husband, also a great college friend) who are expecting their first baby! We can't wait to meet their little man later this spring! Thanks so much for such a fun afternoon Stacy! Love you!
A sunny day at the park
Nope, I didn't even tell her to pose! =) Tripped & fell landing in just the right spot for a photo!
Lucy is discovering new things left & right. She is getting so incredibly tall - 35 inches at her 18 month check up - that there are continually new things within her reach!
Great Grandma Alice turns 93
The birthday girl! At 93 years young, she is quite possibly the strongest Swedish woman I have ever met! Randy's Grandma Alice is sweet as sweet can be. She has raised a wonderful family including my mother in law, Susan. We had a great time celebrating Alice's birthday with a party at my inlaw's home!
Julia & Grandma Biddly
Baby Boen is becoming a handsome lil' chunk-a-chunk! He has the sweetest dimples now! Too cute!
Miss Lucia helping Grandma Biddly blow out her birthday candles - both Julia & Lucia had their turns blowing out the candles!
Soon to be...
... the world's most beautiful bride!! This is my cousin Allyson, she is the cutest little city mouse you have ever met! She is engaged to marry a close childhood friend of mine, Mr. Kyle Barker & they are quite the adorable couple. I had a fantastic time spending the better part of a Sunday with Allyson, Aunt Carol & Allyson's sister-in-law Monica helping Allyson finialize her absolutely stunning wedding dress!
You see, Miss Allyson was a communications major at WSU & then worked after college as the event coordinator for the Bite of Seattle & Taste of Tacoma. She now is in charge of marketing spectacular lodges & tours for Princess Cruises & Princess Tours throughout the NW. Allyson has details in her bones - she is the queen of organization & this is going to be such an amazing celebration joining her life with Kyle's! I just had to share this adorable mother - daughter photo because these two ladies are so very special to me. I love you sweet city mouse! You're going to be the belle of the ball!
Our weekend at Grandma & Grandpa's
At the park to see the crazy geese!
A couple weeks ago, Randy spent a few days helping his good friend Zach Horn move his wakeboard manufacturing business from the San Diego area back up to Tacoma. While he had a strenuous weekend of heavy lifting & long hours on I-5, Lucy & I were taking it easy at Grandma & Grandpa's house! We had a great time enjoying my mom's delicious cooking, riding the Gator around their property, visiting with friends, and of course these photos of Lucy & Grandma feeding the psychotic geese at Borst Park. Thank you Mom, Dad & Mark for a great time!
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