2016

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Hi everyone! I wanted to send out an update on our family for anyone who may have found us since my blog was featured on CFF.org , new CF parents, old friends, and anyone else who might we wondering what we’re up to!

We are happy to say we’ve enjoyed another healthy year! Here are some highlights:

Anna’s Amazing Race raised close to $10,000 for the Cystic Fibrosis Foundation! Thank you SO MUCH to everyone who supports our fundraiser! We are thankful everyday for such awesome and generous people in our lives.

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The Fall brought with it our newest family member, a dog-sister named Pearl, who just turned 1 this month!

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We had our first plane ride – to Disney World! – on Christmas Day! It was truly magical!! It was our first time taking such a big trip and I had anxieties about things like medications, germs on an airplane and being exposed to SO many people at Disney, if she would get really sick etc. But after reassurance from our CF team at Hopkins and a lot of planning we were ready to give it a try. Disney was a great place to choose because they are great about accommodating any special needs. We went to Disney’s City Hall (right inside the Magic Kingdom) when we got to the park and they took her picture and adjusted her magic band so that she was able to scan it and be given a time to return to ride instead of having to wait in the line. It was AMAZING! Anna felt like the Disney Queen with her special band power, we were able to do everything we wanted to even on the busiest time of the year, and we could sit in the shade/drink water/ eat/use the bathroom whenever she needed without worrying about losing our spot in line. I think it was the first time she saw CF as something that wasn’t a burden but also as something that made her extra special. I made sure she knew it was all that time working hard to stay healthy, doing her vest, taking her meds, that helped her have the best time at Disney. We learned a lot too. Things like: you can board the airplane early to sanitize seats and tray tables and wipe everything down, get a letter from your CF center to take with you to the airport and to show at Disney explaining CF and help you may need, spray bottle fans are great to cool down a hot little CFer in Florida, be prepared to drag your vest around airports and planes because it’s too scary to check a $20,000 piece of medical equipment(!), the bibbity bobbity boutique is worth every penny, and that Disney is actually the happiest place on Earth. Anna got her flu shot earlier in the year which helped me feel a little better about the trip since it was during flu season. She made it through the trip with no cough or cold. She had a cold in January that required antibiotics but that has happened every January since she was born so I think it was just par for the course.

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The winter had its ups and downs with virus’ and antibiotics here and there but nothing requiring hospitalization. We’ve discussed having her do a bronchoscopy at some point since she has never cultured anything except for normal staph but has colds off and on requiring antibiotics. Her doctors feel confident in how she’s doing now but if that trend continues it might be beneficial for them to get a sample from deeper in her lungs to make sure there isn’t any bacteria in there that isn’t showing in a throat sputum culture. It sounds like it will be something that will happen eventually but how soon we aren’t sure. In the meantime, her weight and height have been great and she still has a baseline of no cough at all.

This summer has been filled with beach trips, day at the swim club where she’s now 100% swimming on her own(!), learning to ride her bike with her dad and brother, hikes and a cabin trip coming up, and her first big haircut yesterday!

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Anna will be starting Kindergarten this fall! Our elementary school recently changed kindergarten from half day to full day so that is going to be a HUGE change for us come Fall. I considered homeschooling and also holding her a year, but we decided as a family (Anna being the most important vote) that she was ready. I know this year will be one of change and adjustment and I can only hope for health but I expect it could be our toughest year yet. We’re working on her 504 plan with our CF team and that will be finalized in August so I’ll post that when I have it all figured out. I’m going into the year hopeful but with an open mind and ready to accept what comes one thing at a time!

Anna’s next CF clinic appt is in August where we’ll be discussing school AND she’ll be participating in a research trial. It’s not for a medication unfortunately, but she’ll be having photos of her lung taken and other non-invasive tests and samples in order to find more information on her mutation and how it works. It’ll be a long day and we’ll have 2 more 2 day appointments in the future but we’re happy to be able to do our part to advance research for doctors working so hard for our cause. I’ll update more after!

Anna’s Amazing Race – More Info

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Annie has her sneakers laced up and is ready for the Amazing Race on October 3rd! We hope you are too! Thank you to everyone who has signed up their teams and made donations so far. Here are some links for those who haven’t:

Race website which will easily direct you everywhere: Annasamazingrace.com

Sign up or join a team here.

Donate to the race or to a team here.

Volunteering: email me at kmmusso@gmail.com

We also have an exciting way to donate and raise awareness which is ordering a sweatshirt through our booster campaign: http://www.booster.com/annas-amazing-race

We’re working on the clues and routes for all the teams so please get your teams signed up as soon as you can!

Thank you, thank you, thank you! We are looking forward to seeing everyone in (less than!) two weeks!!

Springtime is Here!

Hello! I’m sorry I’ve been gone so long, we’ve been VERY busy and a lot has been going on with our little family! We’re excited to fill you in on the last few months!

First, I want to talk about Anna’s Amazing Race. There WILL be an Anna’s (4th!!) Amazing Race this year and we can’t wait to hopefully see all of our awesome teams returning and some new faces too! Your support for our family in the last few years has been nothing short of miraculous. We are so grateful to have so many people loving our girl and supporting the search for a cure! In the past 3 years we’ve raised over $30,000 for research and there has been A LOT of research going on! They are closer than ever to a cure for Anna’s mutation, the most common and most severe, DeltaF508. .

That said, Anna’s Amazing Race will have a few changes this year but be back and better than ever! The first change is the date. While we normally hold the event in May because it is Cystic Fibrosis Awareness month, it’s also a month of graduations, weddings, and lots of other things! Plus, I’ve recently embarked on a new journey working part-time a few nights a week so a little extra planning time will help us make this year extra AMAZING :)  Anna’s Amazing Race will be held on October 3, 2015. We LOVE Fall and are excited to incorporate new tasks into the event, and you know we LOVE costumes so it’ll be a perfect dress rehearsal for Halloween if you choose to dress up! We will also be launching a new website for the race that will be very user friendly. I’ll be posting the link and more race info in the next month or two.

This has been a great year for the Becket family! Jack has started kindergarten and is loving every minute of it. Luckily for mommy it’s only half day so I don’t have to miss him too long yet! Daddy rode in another CF bike race and did a great job! And Anna started preschool this year! It was a lot of back and forth on whether or not we wanted to take the risk of putting her in school. Since preschool this year was a choice rather than a requirement we really needed to weigh the pros and cons. Ultimately, we don’t want to put her health at risk but we also never want to hold her back if we don’t need to and she was ready to go. We talked to our doctors who assured us that her being in the classroom wasn’t going to be a bigger risk than her being anywhere or even being around Jack so we trusted them. We’ve had a great year! We had our share of colds, antibiotics, and steroids but we only had one linger long enough to bring hospitalization into the picture. We worked extra hard and did a lot of therapy during that time and she finally started to get better so we are happy to say that we got through yet another winter hospital-free! This time now with the seasons changing is always a tricky one for us so we’re crossing our fingers that she stays healthy over the next month.

Anna is more active than ever. She loves to run and is even going to start running little distances with daddy! She also does tap dancing and her first recital is next month! There will definitely be A LOT of pictures coming soon :) She also started swallowing her enzymes which has been a HUGE change! She still sometimes prefers not to but knowing that she can take them easily even if we’re out somewhere and don’t have applesauce and a spoon handy is a relief.  She is still on her same amount of meds, nebulizers, and vest therapy and she’s been doing great. It seems like the older she gets the less she argues about it which has been a nice surprise because I thought it might be the opposite!

Thank you all for always supporting our blog and events. We love each and every one of you! Look for more info on the Amazing Race coming soon! Here are some pictures of the last few months!! XO

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Jack’s First day of Kindergarten

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The happiest Cinderella on Christmas Day

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Annie’s first day of preschool! Wonderwoman bookbag in tow :)

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Her very first field trip, apple picking!

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Big hugs for daddy after his bike race

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Halloween! This years theme: Star Wars. Told you we like costumes ;)

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Being brave at a clinic appointment

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Meeting Elsa at a friend’s party!

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Thumbs up and ready to get a checkup at the clinic

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A closeup of our adorable Princess Leia!

Summertime Happiness

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There haven’t been too many updates on here from the Becket family but if you follow us on Facebook you can probably see that we’ve been loving this summer!

First, I want to say that we are so so grateful to everyone for making Anna’s 3rd Amazing Race so successful. We were able to raise almost $8,000 for the Cystic Fibrosis Foundation. This brings our overall money raised for the Foundation since Anna’s birth to over $30,000! We are so grateful to be surrounded by such a loving and generous support system of family and friends. I think this year’s race was better than ever! Every year we learn more, get more creative, and improve it. We couldn’t do any of this without the unbelievably hard work put in by Robert Godfrey at My Community Events. And I also want to give a special thank you to my mom who loves Anna so deeply and works so hard with me for a cure for our girl. Team America really brought the spirit to a whole new level so I think the costumes will be extra fun next year. Our friend referred to the race as “Halloween in Spring” and we love that! We look forward to seeing everyone and some new faces at next year’s race!

Shortly after her 3rd Amazing Race, we celebrated Anna’s 3rd birthday in June! This was her best birthday yet for me because we got to celebrate a full healthy year! She had a few close calls with hospitalization but overall I felt confident the whole year in our abilities to get her healthy and we always did. I know there may come a time when we can’t get it cleared up ourselves but for now we are so happy to feel empowered and to know that she has that fighting spirit and fights hard with us to get healthy at home when she is sick. I can only hope and pray for another year as wonderful as this one has been.

We are now starting to gear up for a new adventure… pre-school and kindergarten!! After a lot of deliberation, we decided to let Anna go to school this year. Jack started at her age and she seems ready and interested in learning. I can also see some of the effects already from me trying to keep her away from groups and out of classes before now because she is definitely slow to warm up in a group setting. I think giving her this chance to be independent will be a great things for her. I’m also aware that this could mean more germs. I had to make a choice between sending her to the older class in the morning 3 days a week or 2 days a week with the younger class. After a lot of discussion with the teacher we decided to send her the extra day because the older kids are more likely to stay home when sick and also have less runny noses etc. I’m doing my best to be prepared. I’ve already had multiple sit-downs with her teachers, I’ve been helping her get completely potty independent so she’s prepared to be at school, her teachers will have a very open dialogue with me about kids being sick and we will keep Anna home whenever we need to, and I’ll be going with her for the first two weeks to give her enzymes at snack time to keep things as routine as possible. Her teacher is the one that suggested I go with her at the beginning because they want to do things exactly like I do at home to make the transition as seamless as possible. Her teacher has also already known her for 2 years since she was Jack’s teacher too, so we are feeling nothing but hopeful! However, I know that if it doesn’t work out and I see that her health is suffering significantly we are prepared to say it’s not the right time. I’m blessed to be able to stay at home full time and know that keeping her home is a possibility. I know this is just the beginning of school plans and big decisions and I can only hope that we are making the right one for now. I’ll be sure to keep everyone posted on how this works out for us for anyone struggling with the same decisions. And as for Jack, he couldn’t be more excited to be starting kindergarten! He has always loved going to school and luckily for me his kindergarten is only half day so I have another year before I have a complete breakdown over him growing up too fast!!!

In the meantime, we’ve been enjoying this healthy summer! Anna has only been on antibiotics once in the past few months for a runny nose that wouldn’t clear up. But they did the trick and she’s been great for almost 2 months now. We enjoyed two weeks at the beach in Avalon, NJ and we’ve been major pool bums soaking up the sun at the Swim Club the rest of the time. Anna has been swimming and running around every day and I am hoping for a great checkup when we go back to Hopkins in two weeks! We’re planning another trip to the beach before summer is over and then we’ll be ready for school, ballet, and soccer to start. Here’s to another amazing summer!!!

Let’s Talk about CF

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Hello friends! As you all know our annual fundraiser is approaching and I thought this was a great time to blog about some things you may not know about CF and our daily lives.

Cystic fibrosis is an illness caused by a teeny tiny genetic mutation that causes a whole lot of problems. The mutation is a recessive gene so when both parents are carriers there is a 25% chance of their child having CF. There are no symptoms to being a carrier and you may be surprised that 1 in 20 people in the US are carriers and don’t know. The mutation in her genetic code causes her mucus to be thick and sticky. Mucus is present more places that one might think and helps your body in a lot of ways, unless it is thick, sticky mucus. Mucus lines the digestive track, is present in the lungs, and is present in the sinuses. Some of the problems that this causes are frequent lung infections, frequent sinus infections and sinus problems, and she is unable to digest food without enzymes taken orally with every meal. Anna also has some vitamin deficiencies because of malabsorbtion and she releases much more salt in her sweat that is not absorbed like most people. To remedy these issues Anna takes vitamins daily and has to stay extra hydrated. She still gives super salty kisses in the summer time but I love them :) Sometimes you can even see the salt crystallized on her skin and in her hair, it’s kind of crazy! We just make sure she’s always got a drink around and are very aware when she’s in a more risky environment. She has to take breaks from the sun and running around getting too sweaty but we don’t let it stop her too much, and at the beach we pack lots of gatorade!

Some other issues that come along with her not being able to fully digest are a lot of trips to the bathroom and stomach pain. We always have to be aware and make sure she isn’t experiencing any blockages in her intestine and she drinks miralax every other day and takes medicine to help with indigestion and gas.

Overall, Anna takes about 25 pills a day, 4 droppers of medicine, an antacid, and a vitamin. Those are the easy parts! She spends an hour a day doing her vest therapy that shakes her lungs loosening the mucus and the same amount of time doing breathing treatments. She does albuterol and hypertonic saline in her nebulizer. These treatments go in good spells and rough patches, both seem to last a few months.  In the beginning it was so easy! She was so little and the shaking would put her to sleep. She went through a major rough patch when the napping stopped and she just wanted to be free and mobile but now it is like clockwork unless she’s having a bad day… and then it’s meltdown inducing. But the meltdown can usually be cured with amazing gifts to moms like Paw Patrol, Wallykazam, and if its a major major meltdown Frozen will always do the trick. Limiting TV seems to be a motivating factor because our saying is “all done vest, all done shows” and at this point she’d probably do some extra vest time for extra TV time so she hasn’t put up much of a fight.

There are about 30,000 people in the US living with CF with about 1,000 new CFers born each year. Unfortunately, Anna can’t meet any of her Cystas and Fi-”bros” out there safely until there is a cure. Bad bacteria gets trapped in the lungs of CFers and at some point they are colonized and can’t be cleared from their lungs. These bacteria can easily pass from one CFer to the next, especially since they are prone to coughing. So far, Anna hasn’t cultured anything harmful and has only ever cultured normal staph which is very present in the environment and they only treat when it causes symptoms. One day I dream of Anna meeting her best friend and cysta Charlotte, while her mom and I look on crying tears of joy and hug each other as they hug.

We fund-raise because the truth is that CF is a horrible, ugly, selfish disease. Anna looks perfect but her insides are far from it. I don’t want Anna to ever suffer, I never want her to struggle to take a deep breath, I don’t want her sitting in a hospital bed, I don’t want her to have so many lung infections that eventually her lungs are scarred and losing function. But all of those things inevitably lie in our future without the researchers working so hard to find new therapies and a CURE for this disease and without the generosity, love, and support from people willing to fund that research.

Our way to cope is to find the positive. We are so blessed with a loving support system from family, extended family, friends, anyone who has read our story and been touched, anyone who has seen that beautiful blond with the curly hair and fallen in love. We get through every day by appreciating the time together, the healthy time, the silent nights where she doesn’t wake up coughing at all, watching her run at the park, appreciating this beautiful time and doing our part to ensure her healthy future.

When donating to the Cystic Fibrosis Foundation, 90 cents of every dollar goes directly toward research. This is a huge margin compared to other organizations and shows their dedication to finding a cure.

Bill Gates is a pretty cool guy. Not to mention a smart and generous one. He plans to do with his money as much as he can to make a real difference. The Cystic Fibrosis Foundation is one of the places he donates to because he knows that this is another disease that he can have a real hand in eradicating. A cure is truly on the horizon and you can be a real active part of curing a disease that has claimed the lives of far too many.

Here is a link to the drug pipeline for drugs currently being tested as cures and treatments for CF:

http://www.cff.org/treatments/Pipeline/

Kalydeco is already making a difference in the lives of the people with that specific mutation and many people are seeing a huge improvement in their lives. Unfortunately, Anna does not have this mutation but Ataluren, VX 809 +ivacaftor, and VX 661+ivacaftor, are all working their way through the pipeline now and target Anna’s mutation. Anna’s mutation is the most common, affecting around 53% of the CF population. Needless to say, researchers are working hard to find a cure for this mutation specifically and it is their top priority. You can also see the many new therapies they are working on that can improve the quality of life for CF patients and increase life expectancy.

Cystic fibrosis is an invisible disease, which makes fundraising a challenge. Look at the beautiful princess up there, she looks like the picture of health. But Anna and all of our family work really hard to keep her that way. We have been blessed with her health so far and we have nothing but hope for her future, but we have to fight for it just like we fight to keep her healthy every day. We have to do our part to raise funds that will one day give her the chance at a completely full, happy, and healthy life. Not to mention it will help me to stop embarrassing myself by crying my eyes out at every father-daughter dance at a wedding, heartbroken and feeling guilty for even letting myself think, “Will I see this?.” While she still wants to marry Daddy at this point, the day I see her dance with him in her wedding dress, breathing deeply, feeling wonderful, and looking so beautiful and happy, it will be the best day of my life.

Finally, I want to introduce you to someone very special. Her journey has inspired me beyond words. Her positivity gives me hope and lights my way in the darkest times. I am rooting with my whole heart for this girl who calls herself a “chronic badass.”  Her name is Caleigh Haber, she is 23 years old and from San Francisco. I’ve been following her journey on Facebook and you can too at Fight2Breathe https://www.facebook.com/fight2breathe.

Her website is fight2breathe.org. She is in the end stages of this disease and as of April 1st she was officially placed on the transplant list for a double lung transplant. She is fundraising for her transplant and I am hoping to donate a portion of the money raised by Anna’s Amazing Race to her fund. Please read her story and you will see why this tiny girl has given me big hope for Anna to live a positive and happy life and also some of the challenges that come with CF over time. Once Caleigh gets her new lungs, a cure will be more important than ever for her too. So get your teams together, spread the word to friends and family, and let’s have fun on race day and do our part to make a difference for Anna, Caleigh, Charlotte and all of their the cystas and fibros.

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