Cystic Fibrosis Blog - Sister Fibrosis

Thank You, Thank You, Thank You!!!!!

June 14, 2013 Leave a Comment

Anna’s 2nd Amazing Race was nothing short of truly amazing. It was a day full of encouragement and love. Words can’t describe what it meant to us to see the support of our families, loved ones, friends, and even people we have never met that somehow found our story and wanted to contribute to our cause. There are times that this disease can feel isolating, having to keep a distance between CF patients themselves, and the fact that while being a common genetic illness it isn’t all that common to meet other CF families. Seeing everyone come together on this day to show their support for Anna and for our family, and to show just how many people are fighting with us for a cure, is the most wonderful feeling I could imagine.

Last year was our first year fundraising and we set our goal at $2,500. We were surprised and elated when we shattered that goal and raised a little over $9,000 for the Cystic Fibrosis Foundation. Inspired by last year, we set our goal high for this year with $10,000. I thought it might be unattainable a second year but this year we raised $12,315!!!!!! We are so grateful for everyone’s hard work in raising funds and incredibly thankful for the awareness you’ve brought to CF in the process.

This year we had 20 teams racing!! We were so happy to see familiar faces coming back to race again and excited to see some new faces join our cause! Some teams even found us by reading about our event in the newspaper which was a great surprise We had all new tasks this year, they ranged from things like our own version of ‘Are you smarter than a 5th grader?’, to making CF posters and raising awareness downtown, to acting out a scene from a play. We plan to keep changing the tasks every year and we already have a lot of fun ideas for next year!

After everyone got back from the race we enjoyed food, fun, a raffle, and awards. The top prize went to the Lime Green team who finished the race first having completed all of their tasks. The top earning team was the Cowgirl Team who raised $2,000!!! A very close 2nd was the Black Team who raised $1,500. And the most spirit went the Gold team who’s creativity pulled them through, although it was a tough match against the Ladybug team!

We are already looking forward to next year when the race will be held on Saturday May 17th. We will work until then to make it even better! We recently submitted the donations directly to the Cystic Fibrosis Foundation where they will be using it to continue research in search of a cure.

This Sunday our little Anna Rose turns 2 years old! We are so thankful for the past 2 healthy years and we look forward to a cure in the near future! THANK YOU for being part of making our dream of a cure a reality and for giving her the hope of truly healthy years to come. In her 2 years since we even heard of Cystic Fibrosis we have raised over $20,000 toward a cure. We are so grateful for the love and support we’ve received and on behalf of Anna and everyone who loves her so deeply we thank you from the bottom of our hearts.

We’ve included a gallery of photos below!

We need to thank some incredible and generous businesses that donated to our cause either through food, gift cards, or donations:

Annie Williams for Mary Kay

Thank you all so much!

Filed Under: Fundraising, Our Story

We weathered the storm! Here comes the sun…

May 14, 2013 Leave a Comment

In our last post, I talked about the latest that was going on with Anna. Here’s a quick recap: After a few days of cold symptoms, an x-ray showed pneumonia in the middle lobe of Anna’s right lung. We were presented with a long list of scenarios and were facing a long hospital stay if she didn’t improve. We kept her on an antibiotic, increased her therapies to 3 times a day, and worked hard to get her healthy! It was VERY important to get the pneumonia resolved because it is when the lung is compromised that lung damage can occur, so we wanted to get it taken care of before that had a chance to happen.

It took a few treatment filled (and anxiety filled for us) days but she finally started to improve on Thursday of last week. Since then she improved a little bit every day but I wasn’t sure it would be enough to avoid hospitalization. It all came down to her x-ray. I haven’t felt anxiety like that in a LONG time. I knew everything would be ok and we would do whatever we needed to get her healthy but let’s face it, no one wants to be stuck in a hospital room for 2 weeks! I didn’t want Anna to have to go through the PICC line, or any of it. We spent a few days there last year but this year she is so much more aware and active and talking, I just didn’t know what to expect. I’m happy to say I STILL don’t know what to expect because we have narrowly avoided yet another hospital stay. Her x-ray showed that her lung was GREATLY improved. The x-ray looked completely different! It was the absolute best possible outcome. I’m so proud of her for being so strong and being cooperative during all of the extra treatments. She is our big, brave girl

So now, more passionate than ever for a cure, we get to get back to our fundraiser THIS Saturday!!! We are SO excited for Anna’s 2nd Amazing Race. We are thankful to all those signing up and and donating. We officially have more teams than last year and are really excited to hear all these new racers joining! We can promise you a day of fun and laughter for a great cause. Please share our video, send out emails, post on your Facebook page, anything! You will be surprised how many people will respond and regardless of the outcome you are spreading awareness which is HUGE!!

I wanted to let everyone know that when making an account on My Community Events website to donate, all of that information is required to use a credit card, it is completely secure, and the information will be used ONLY for your donation and nothing else! No spam, etc. We will also be taking cash or check donations either before or on race day. All checks should be made out to the Cystic Fibrosis Foundation. All donations are TAX DEDUCTIBLE!!! We have the links to sign up your team and donate linked here. If anyone has ANY questions about donating or signing up please let me know I am happy to help! You can email me using our contact form and I will get any info you need. Just a reminder we still have a team of 2 looking for 2 more members if anyone is short a few teammates! We are so excited to see everyone on Saturday. Thank you for all your support always and for your prayers and well wishes this past week. We couldn’t be more appreciative and we feel SO blessed to have you all in our lives.

Filed Under: Fundraising, Living with Cystic Fibrosis, Our Story

Stuck in the In-between

May 2, 2013 1 Comment

There has been A LOT going on with us in the past few weeks. First, we’re gearing up Anna’s 2nd Amazing Race and are SO excited to see people signing up and submitting donations! We’re so appreciative and can’t wait to have a great day of fun for the cause closest to our hearts. May is a big month for CF families because it’s Cystic Fibrosis Awareness month. We have Great Strides, the 5K walk run by the Cystic Fibrosis Foundation, on May 4th and then our event May 18th. We’re inspired to work even harder this month after the news we got yesterday…

Jack has been sick with a cold for the past 10 days now and he’s finally starting to clear up. Despite our best efforts to keep her healthy, Anna started showing symptoms last Friday. We called our doctors at Hopkins and even though her last culture was clear, which means she didn’t have any bad bacteria growing in it, they decided to start her on an antibiotic to help her get over it quickly. Things went from bad to worse on Monday and she was really coughing a lot and having a hard time. They decided to switch her to a different antibiotic. We had an appointment at the pediatrician the next day to have Jack’s ear infection checked up on and to have Anna’s lungs listened to. The doctor decided to send Anna for a chest x-ray. Her x-ray showed pneumonia in the middle lobe of her right lung.

As prepared as I always think I am or as much I think I know CF I still get surprised by it. I guess I wasn’t expecting it to become pneumonia so quickly, I mean the first time she coughed was Friday and it was only Tuesday! I was worried about Jack having it since he had a terrible cough for 10 days but his lungs despite the cough were perfectly clear. It was just one of those terrible moments where I really understand how differently Anna’s body is on the inside.

Hopkins decided they wanted to see her the next day so that’s what we did yesterday. They explained the x-ray to us and showed us what the pneumonia looked like and we made a plan to get it cleared up. It’s important for us to get her lung back to normal as quickly as possible so that no lung damage has any time to occur. And we want perfect scar free lungs!!! So we are keeping her on her antibiotic and doing her vest for an hour and a half every day. We’re also doing her albuterol and hypertonic saline as usual with an extra albuterol treatment with her extra vest treatment. They’ve given us until the 11th for our next appointment. So for the next 10 days we will be working our very hardest to get this lung healthy! That said, everything we are doing still might not clear it up so we’ve been presented with a seemingly endless list of scenarios.

Scenario 1: The antibiotics and extra therapy does it’s job and her cough is gone and get x-ray is clear at the next appointment. This is the VERY best scenario and what we are hoping happens!! This would mean we go back to life as normal

Scenario 2: Her cough is clear but her x-ray still shows the pneumonia. If this happens they’re going to give us some more time and keep the extra therapies going (because sometimes x-rays can take a little time to catch up to her getting better) and if when they do the x-ray again it’s clear we’re back to normal but if it’s not clear then they’ll do a bronchoscopy.

Scenario 3: Scenario two happens and she needs the bronchoscopy. A bronchoscopy is where the patient is sedated (not completely but for the most part) and a scope will be put through her mouth and into her lung where they will remove any mucus build up and clean out the problem area. If all goes well this is an outpatient procedure.

Scenario 4: They do the bronchoscopy and they find a lot of mucus or some cause for concern and decide during the bronchoscopy to admit her for the course of IV antibiotics.

Scenario 5: On the 11th she is still sick and the x-ray is still bad – she will be admitted on the 11th for a 14 day course of IV antibiotics.

Scenario 6: They get the results from the culture back that they took at her visit yesterday and it shows a bad bacteria growing in there they might reconsider and admit her for the IV antibiotics earlier, they should have those results by this coming Monday.

So in the meantime, we’re just doing the only thing we know how to do and taking it one day at a time, doing her treatments and giving her meds. We are VERY hopeful that we can avoid a hospitalization but I’ll do whatever it takes to get her back to 100% and if that’s what our doctors think it will take then that is what we’ll do. The in-between is the worst part because I analyze every sound she makes but I have no real way to know if her x-ray will be clear. At this point I’m just focused on her cough because we know that if the cough goes away then we won’t be admitted on the 11th.

So needless to say, this month means a lot to us to raise awareness and raise money to fund research toward a cure. This current CF situation just strengthens our resolve to do everything we can for Anna now and in the future to let her live the life she deserves, free of this scary in-between and with nothing but a world of possibility in her path.

Thank you to everyone who is signing up for and and donating to Anna’s Amazing Race! If you still need to sign up your team or wish to donate the links are on the top left of this site. Thank you again! We are working hard to get healthy so we can be there and spend the day with everyone

Filed Under: Living with Cystic Fibrosis, Our Story

Anna’s (2nd!) Amazing Race!!!

April 4, 2013 1 Comment

We are so excited to be able to say that our event has become an annual one! We could have never dreamed of the support we got last year and the success we had. Last year for Anna’s Amazing Race our goal was to raise $2,500 and we raised $9,700 instead.

This year we’ve decided to be bold and make our goal $10,000. It’s going to be a challenge but we’re up for it! We’re so motivated knowing that a cure is so close. There are currently 2 drugs in the testing pipeline right now that treat the underlying cause of CF for Anna’s mutation. While this is exciting news, it takes a lot of time and a lot of financial support to fund this research.

If you’re a reader of my blog or a CF parent yourself, you know the anxiety and helplessness we feel as parents on a daily basis. Doing Anna’s treatments, making sure she has her medicine, and doing the best I can to keep her away from germs are the only things in my control. And doing my very best at all of that still doesn’t prevent Anna from getting lung infections. The reason this means so much to me is that this is something I really CAN do for her future. The day Anna receives her first dose of whatever it will be that treats the underlying cause of CF, we will ALL have had a part in that, a part in curing the most common and currently fatal genetic disease.

Anna’s Amazing Race is taking place on May 18th at 1pm. That’s only 40 days away! If you participated in last years race you know how much fun it was! And if you didn’t hopefully you saw the pictures, I’ve posted more below. I know it’s intimidating to participate in something that you aren’t quite sure what it is or what you’re going to have to do but that’s the beauty of this event! It’s something purely fun for a good cause, it’s unlike any other walk or fundraiser you may have already participated in. We will have different tasks set up all over York. You’ll receive a clue, go to your task, complete it, and receive your next clue. Every task is unique and a lot of fun! Last year some of the tasks included getting giant beach balls up Reservoir Hill, blindfolded cupcake decorating, and a karaoke challenge. This year the tasks will be ALL new and equally as fun and challenging. You’ll get a mental workout, and maybe a slight physical one too Every task is GPS mapped so you’ll have no issues even if you’re not familiar with the area. You get to choose a team color and wear it, decorate your car, and whatever else you want to do! People really got into the spirit last year. And after the race we’ll have lots of food, an awards ceremony, and a raffle for everyone. We would LOVE to expand the race this year and see some new faces so if you thought about it last year and weren’t sure don’t hesitate to get a team together and have a fun day with us for a great cause! Links to register and to donate are on the top left of our site!

While CF is the cause that most seriously affects our family we see value in ALL causes, so we’ve spent the last year participating in fundraisers for other important causes like The American Cancer Society, the Leukemia and Lymphoma Society, and Project Share. And we can say first hand that doing good FEELS so good. We’re so happy to have fundraising in our hearts and you will be too! Any contribution helps and it’s one amount of money you’ll never regret spending. Thank you so much!

Filed Under: Fundraising

Bad Days (and Weeks) Happen

March 11, 2013 2 Comments

These past few weeks have been really challenging. Two weeks ago I learned of the passing of a young boy with cystic fibrosis, he was just 2 and 1/2 years old. He passed away due to complications from a CF related procedure. Needless to say, this shook me to my core. His mom also wrote a blog, with heartbreaking similarity to this one. He left behind loving grandparents, adoring and dedicated parents, and a 4 year old big sister.

I work really hard to never let myself go there, to never let the negativity and fear get that dark, to never let the thought that I could live one day of my life without Anna in it enter my brain, for fear that the darkness and fear would take over and change me forever. But when something like this happens I couldn’t help but think how easily it could have been us mourning an unimaginable loss. I couldn’t help but think, what would we ever say to Jack? How would you ever live beyond this? How would anyone be OK again? I don’t have any of the answers to those questions and I hope with all of my being that I never have to. I have never spoken to this family but I am mourning with them and for them. This is a loss for our bigger family, the CF community, where every CF family automatically becomes a member. A family bonded by sadness, anxiety, dedication to keeping our kids healthy and to fundraising for our children’s futures, hope, and love.

This is such a transitional, scary, and hopeful time for CF parents. It’s such a mix of emotions because you’re so hopeful that a cure is on the horizon but you’re so terrified of time passing. You just have to pray that we make it, please let us make it to a cure with scar-free lungs. For now, I can only move forward. I’ve finally begun to pull myself out of the darkness and back into the moment, this magical moment where we are all happy, healthy, and together. I’m soaking up the moments like this…

…and this…

…and appreciating how incredibly blessed we really are.

While the past few weeks have reminded us how severe Anna’s condition really is she has continued to be incredibly well. She hasn’t been on antibiotics since January and we haven’t needed any CF related doctor visits. April 1st will mark the 3rd time she’s made it the full 12 weeks in between regular appointments without any surprises in between! I remember the first time they told us 12 weeks, I thought they were crazy and didn’t know how we’d make it that long. Anna has just exceeded all expectations, her weight and growth have both been perfect, all her cultures have been clear so far, and her baseline is still zero meaning she doesn’t have any kind of cough on a daily basis. I guess as her reward to herself for doing SO well she has made us her personal slaves, giving us limited choices but to give in to her every wish at all times. She’s talking A LOT more lately, saying full sentences like her personal favorite “I don’t want that.” She says everyone’s names, Mom, Dad, Jack Jack, Pat (Patches), Mimi, Papa, Ben, RahRah (Sarah), Dampa, Damma, Poppy, Do Do (Joey), Mack (Max), and Tessie. And “baby” which is the name of every baby doll she owns. She loves being out and about but also knows how to relax and snuggle up with popcorn and a Tinkerbell movie. She also has a part time job on Thursday mornings working as Jack’s personal towel girl at swim lessons…

So for now we are getting back to taking it one day at a time. We are counting our blessings, soaking up this time as a family, praying for those who are mourning loved ones, hoping for a cure, and being thankful for today.

Filed Under: Living with Cystic Fibrosis