Tuesday, May 31, 2011

Yard sale success

We had a yard sale this weekend to raise more money for CF. It was seriously humongous. Neighbors and friends donated things for almost a month, filling our garage and leaving us with a ton of stuff to sort through and price out. Friday night, around 8pm, we set out to tackle to piles of junk and after about 2 hours decided to call it a night. By call it a night I mean stop organizing for the early morning sale and drink some tasty beers with my neighbors. Well, about 3 hours and 6-8 beers later, we really called it a night, realizing that we'd be up in 5 hours to finish our sorting and get the yard sale underway. Let me just tell you that I fully acknowledge that the decisions made on Friday night were poor ones. But we pulled through and got up with the alarm clock at 6am. The yard sale was all pulled together by about 7:30 and with several cups of coffee under my belt we were ready to go. Just after noon, we had raised about $600. I posted a curb alert on craigslist and a few more people trickled in, giving small donations. By 1 pm everything was gone and we were up $615. That's $615 more for Cystic Fibrosis my friends! Thanks to all who donated and all who participated to make our final 2011 Great Strides fundraiser a success.

I haven't had to much worthwhile to post about lately. We've been keeping super busy with play dates, lots of time poolside in the backyard, and even more time spent applying sunscreen for said time poolside. We're taking our longest stretch without seeing the CF doctors. I think its typical to see those doctors every 3 months, but with all the other fun stuff that complicates Drew, we go once a month. At the last appointment, we decided that we would go 6-8 weeks. [Knock on wood] we haven't had to make any sick visits since the last well check.

I'm still waiting on our grand total of money raised for this years Great Strides team. Hopefully within the next few weeks the numbers will be finalized and I can wrap things up. Many thanks again to all who supported us, and I hope we can continue to count on your support!

- Posted using BlogPress from my iPad

Thursday, May 26, 2011

Wanna help me out?

I stated a while ago that I volunteered to be the state advocacy chair for the CF Foundation here in Cincinnati. It doesn't require much work at all - reading an occasional email about things going on in government that could affect the CF world in some way or another, a quarterly conference call, a note to my legislators or representatives when there is a hot issue being debated or voted on. Well, I got an email today. Here's what it said:

"Dear CF Advocates,

We need your help! The latest budget proposals being debated by Congress would dramatically cut crucial funding for the Food and Drug Administration (FDA) and the National Institutes of Health (NIH). These agencies play a key role in our effort to research and approve new CF Therapies. We need to keep the pressure on Congress to prevent these cuts!

Please send a message to your Members of Congress opposing these cuts.

If the FDA faces heavy budget cuts, it will take much longer to move promising potential therapies like VX-770 into the hands of patients. That is added time that many CF patients and people with other diseases cannot afford.

Similarly, the NIH performs crucial CF research. They are currently creating a new center to help develop scientific discoveries into new medicines.

If the NIH faces significant budget cuts, these breakthroughs may never reach people with CF and other diseases. These potential cuts jeopardize our goal of finding a cure for CF.

Please click here to send a pre-written message to your Members of Congress opposing these cuts.

Thanks for all you do!"

I'm asking all of you to be my advocates. I'm asking everyone reading this- people who obviously care about CF in some capacity, be it for Drew, their own children, family members or friends - to click on the link and send a letter to congress. The link will automatically draft a letter to your legislators, you don't have to find them or even know who they are. There is a form letter included. You can personalize it, or you can send it as is. It takes less than 2 minutes to do the whole thing. It's our letters to these decision makers that make the difference. They are representing us, and they need to know what's important to us. This is important to me, to us. And the more people who do this, the more the message will be heard.

Finally, on the advocacy note, I need a few people who I can rely on to help me with this stuff. We need advocates in all states as this is an important issue nationally, but I need a few people from Ohio who will be able to do simple things like this with me when they come up. As a CF parent, I love getting the latest news and information firsthand before some of the issues are even voted on, and being able to voice my thoughts and opinion on them on behalf of my son. Will anybody reading this advocate with me? When people ask me what they can do to help, this is what I want, this is what you can do to help me.

- Posted using BlogPress from my iPad

Tuesday, May 24, 2011

Some preliminary numbers, and other odds and ends

As the tallies from the cities we walked in begin to trickle into my inbox, I wanted to share the impact that we (as in you and me, dear reader) made in the fight against CF this year. Our South Carolina team walked first this year, and that walk raised over $120,000. New London, Connecticut walked the same day as Charleston, raising $28,000. Next up was Philadelphia, raising close to $200,000, San Francisco, raising just shy of $200,000, Chicago with $161,00, and finally Cincinnati with a running total currently at $370,000!!!!! Team Doin' It For Drew is walking in Honolulu next weekend. There are hundreds of Great Strides walks across the country still going on, but I'm so proud to say that Team Doin' It For Drew walked in walks raising over $1,000,000 for Cystic Fibrosis Research. To be clear, our team didn't raise a hot mil - we're just over $20K. But the walks that we all walked in raised over ONE MILLION DOLLARS. Thank you to everyone who participated by donating, by fundraising, by walking with us. Drew's got a chance at a long and healthy life because of you.

This weekend we're having a yard sale and that will be our last big donation to this years walk. We've received a ton of donations from friends and neighbors and strangers hearing about our yard sale and we have it all piled up in our garage. I'm hoping for great weather and a big success. I think i'm going to bake some of my special choco chip cookies (not to toot my own horn, but if you haven't had them you'd love them, seriously) and brew some coffee and sell that too. After Saturday, I'm going to plot our fundraising activities out for the next year, take a break, and focus on my advocacy efforts. I'm still looking for people to help me advocate - for their own kids, for all kids, for Drew - and its really something small and simple that can have a huge impact.

I'm not sure if I ever mentioned that shortly after we found out that Drew had CF, we learned that our neighbors sister also has CF. Well, his sister, Rosie, will be turning 50 this year. Isn't that amazing!! Her mom lives next door and is always stopping by to tell me about how hard she works to keep healthy. I know Rosie is proud of her mom for helping her to live the life that she is, and I know her mom is equally as proud of Rosie for managing her disease with a positive attitude. I hope that some day I can write that about Drew. Right now, i'm proud that he is 1 and that he sits through his breathing treatments every day without complaining, and that he takes all of his meds all day everyday with easy. I'm one proud mama and I'm hellbent on finding a cure.

Here are some pictures from our walks...

Sunday, May 22, 2011

We Walked

I was going to wait until I had the final numbers of money raised at the walks we all walked in this weekend before posting about them, but I dont know when that info will come so I figured, what the hey. This weekend, team Doin It For Drew walked in Chicago, San Francisco, Philadelphia and Cincinnati. The weather here was absolutely perfect. My neighbor turned two of our t-shirts into onesies for the twins so that they could match the rest of us and off we went. I would be lying if I said I didn't have any anxiety about taking Drew to the walk. I'm afraid he's gonna catch something horrible when he's not even around anything even potentially harmful to him, so "exposing" him to an environment where there would be hundreds of other kids and adults with CF was making me want to vomit. But when we got there, I realized that all of the other parents there felt the same way I did - they didn't want their kids catching anything from anyone just as much as I didn't want drew being exposed to nasty CF funk, and we stayed away from each other. They gave the folks with CF red leis to wear so that they could be identified. I think I've mentioned before that the only real restriction or guidance that the CF world gives you is to stay away from other people with CF. You or I can't "catch" CF, but for people already suffering with it it's easy for them to pass the harmful bacteria back and forth to one another. Staying 4-6 feet away is the general guideline I've heard, and that goes as well for when you are sick and around someone with CF - just keep a few feet away.

Anyway, the walk in Cincinnati this year seemed a lot bigger than last year. Whether it was or not I'm not sure. The goal was to raise $400,000. I hope we exceeded that. Ill update when I know for sure. We had a nice little group of our great friends there to walk with us and it was amazing. More than anything i'm glad that I took Drew. Once we got there the anxiety died down. There were so many people there that no one even really bothered with him, which is always my preference. We had gone to the zoo the night before because it was Zoo Members Night and Barney was scheduled to make an appearance. It was just the 5 of us that went, something that rarely happens. There always seems to be something else going on that prevents us all from doing things together as a family - frankly, the hassle of it all is probably the biggest - but when we do get out we have fun. ( I'm going somewhere with this, bear with me). When we got to the amphitheater to see Barney, Drew freaked out...it a good way! He was jumping up and down and clapping and squealing with delight. My shy guy might just not be so shy after all, I've just kept him sheltered. He loved every second of the show and every minute we were at the zoo. Being outside and left alone helps my germaphobia, but what helps it even more is seeing how much he loves doing the same things that his sisters adore doing as well. At the walk, we got the same behaviors. He wanted out of the stroller and wanted to play with Ella and Lily. He wanted to hold our hands and walk around and explore everything around him. And I was so happy to let him do all of that.

It was a hard winter, because every time we got a cold we ended up sick for 2 months, and then another cold would move in. We didn't go anywhere for months, and even now, the thought of a germy playground skeeves me out quite a bit. But I'm starting to see that not all germs will land him in the hospital. That he will be just like you or I and build up some resistance to common germs. Sure, there are many things that will continue to be dangerous to him, but that's what my friend Dr.Clancy is working on (he doesn't know we're friends yet). As a parent, when you see your kids having fun, it brings joy to your heart. It was a fantastic weekend. Between the zoo and the walk, a friends birthday party and a family trip to Graeters, this weekend was just what the doctor ordered.

Hopefully I'll be able to share some more about our walks and our fundraising as the numbers roll in. My Mothers Day present was an iPad [because if you know Martin you should expect that any gift will be both electronic and something I've been talking about so much that he will do whatever it takes to shut me up] and it's taken my household productivity to an all time low. Everything from laundry to blog updates have gone to the wayside as I spend every free minute discovering the new and very cool things that the iPad can do. That and the fact that the weather has been so nice have kept me from my website that I do want to keep up to date.

Thank you all again, everyone who helped us to meet and exceed fundraising goals this year, and especially to those who were there by our side as we walked for hope. We hope we can count on your for continued support. And I promise to post pictures from all of our walk...just as soon as I can figure out how to do it on the iPad!

Thursday, May 19, 2011

I have a group of girls that I get together with once a month for something we call Gourmet Club. There is nothing gourmet about it. We use to get together at someone's house once a month and each bring a part of the main meal that the host was providing, but we've recently switched to eating out which is even nicer, in my opinion. I don't see most of these girls ever other than at our 3rd Thursday of the month night out, and many of them I hardly even talk to outside of that one night out yet we know more about each other and have more fun together than most seasoned friends. We laugh together and we cry together and sometimes we laugh until we cry. We share stories with each other and forget about life for a while, all while talking all about our lives and our loves. I look forward to it every month. It keeps me sane.

We found ourselves at the pediatrician again today. Drew was up all night Tuesday with a fever that he jus hasn't been able to shake. Finally went to the pediatrician this afternoon and he's got an ear infection. Thank God it's only an ear infection. It's hard for my mind to not go to the worst case scenario. Gourmet Club helps that :) An ear infection is not nothing, but it's something that I can treat with an oral antibiotic from my house that I can get from CVS on my way home from the doctor. I dot have to spend hours on the phone today with insurance explaining why he needs it and figuring out how I can get it the quickest possible way for a reasonable price. It was the easy answer and it made my day better knowing that it wasn't something worse.

The walk is finally here! Tomorrow our Cincinnati, San Francisco and Philadelphia teams have their Great Strides walks. To date, our teams have raised about $18,000. The top walker in the country raised almost $100,000. That's my goal. Like not my personal fundraising goal for next year, but that's my goal. I want to raise money all year long for Drew. I want to find big donors and raise big money. And I want help. I want my friends and family to help me reach this goal. Reaching this goal means newer medicines faster. It means the search for the cure will come to an end because a cure will have been found. I have to do this.

If you have already donated to my walk, I thank you, sincerely. If you haven't, I'd like to ask that you consider it. The reality of CF is not something that I want to talk about or dwell on or discuss, but it doesn't make it go away. What will make it go away is a cure, and the only way we're getting there is by helping to raise money. Here's one more look at our video. Wish us luck tomorrow at our walk. I hope that every location can announce that they reached or exceeded their goal, whatever it might be. Thank you thank you thank you!!!!

Sunday, May 15, 2011

An update on the bat, and Team Doin' It For Drew

The bat was taken away by the SPCA for rabies testing, but not before we had to get rabies shots. That's right, we're vaccinated against rabies now. Well, not all of us. The kids are. Martin and I are waiting until we get the bat results back and if hes positive then we will go. The second of 4 shots for the kids happens tomorrow. Its not the board of 40 needles into your abdomen like everyone thinks rabies shots are. Its a shot, like any other vaccine given these days, right into the thigh. You get one the "day of the incident", then again on days 3, 7, and 14. Then we're good. Well, we're good for this instance, but should we come in contact with another rabid creature at some point in our lives (which, give then craziness of all of this, I wouldn't rule it out) then we would have to go through the process again. This has got to top the list of most wild Friday the 13th's I've ever had.

Our Great Strides teams started walking this weekend! The walk in Connecticut was on Saturday as well as the walk in South Carolina.

The South Carolina walk raised over $120,000, which was more than they raised last year. That's such great news for the CF Foundation, as I had mentioned that they were going into deficit funding to support the research and pharmaceutical companies as they push forward with what they're working on that will change the world for Drew and others with CF. Our team, as of today, has raised $16,005. Our original goal was $15,000, but then I doubled it. The foundation needs the money and they need us to raise it. I don't know if we will make it to $30,000 this year, but I'm hoping that by the end of May when all donations are accounted for, we will have over $20,000 credited to our team. That's awesome, but its not enough. To put it into perspective a little, look at this invoice for Drew's medications this month -
That's right - $3541. Look at the "Day's Supply" column. That's only a months worth of medication. Thank God for good insurance and supplemental state insurance that covers most of these bills. This is medication that Drew needs every day, several times a day. What if the state budget cuts the funding for the Bureau for Children with Medical Handicaps and I have to come up with cash for this? What about people who don't have good insurance and can't afford these drugs that their children need to live with this disease. What if there isn't enough money to fund the research that will cure CF? This is why I'm bothering all of you with letters and emails and fundraisers and everything in between. This is why I volunteered to be the State Advocacy Chair. I need to email our legislators and let them know why its important for them to keep these programs when they plan the budget for the upcoming year. I need to tell them to support the National Institute of Health and the Food & Drug Administration, the people who will approve that drugs like VX-770. If cuts happen, it will take longer for things like this drug to make it through the pipeline.

Not everyone cares about CF as much as I do. But if not me, who? That's why I bug you. That's why I ask for your help and support. I'm still looking for people to join me next week when we walk at Sawyer Point in Cincinnati and in Philadelphia and San Francisco with the hundreds of other families affected by CF. We would love you support now and going forward. It means so so much to us.

Friday, May 13, 2011

Rabies shots...and other goings on

We woke up this morning to a bat in the trashcan next to our bed. EWE EWE EWE!!! I asked Martin what it was and he was like you don't wanna know. I immediately thought it was a snake and was ready to pack my bags and put the house on the market (recall THIS post). But no, it was not a snake that was in our trashcan flapping all around, it was a bat. As a friend pointed out, at least it was already in the trash can. Martin folded down the bag very calmly and took it out to the front porch, where he tried to crush it with a case of Diet Dr. Pepper (first thing he could find). Had it been me that found the bat, I would have just run around screaming like a crazy person.

I called a bat exterminator just before 6am. He said its bat season, and from May 15 - August 15 all bats are protected and many of them are having babies so if they did come and find a hole or something they couldn't patch it because you can't keep the mother from its babies. I'm all about compassion, especially when it comes to a mother and her kids, but we're talking about a potentially rabid bat here. Come on... So I asked what purpose an inspection would serve. They said that if they had to come out right now and catch it it would be considered an emergency visit and would cost WAY to much money. I caught it, I just don't know what to do with it. And apparently killing it is out of the question. At this point we aren't sure if the bat is dead or alive. Its on the front porch in a trash can in a bag under a case of Diet Dr. Pepper.

So the exterminator tells me I need to call the health department, and I need to freeze the bat. Yeah, I had the same reaction. Martin wrapped the thing up and stuck it in the freezer, and I get on the horn with the Health Department. Here is how the conversation goes: Me: Hi, I found a bat in our... HD: IS THE BAT ALIVE? Me: Um, I'm not sure about that, I called an exterminator and he... HD: DID THE EXTERMINATOR KILL THE BAT Me: Um, no sir, I just talked to him on the phone. I have the bat and I don't believe that it came into contact with anyone but I wanted to know how I can get the bat tested for rabies. HD: WE NEED THE BAT ALIVE Me: Hang on 1 second while I go take it out of my FREEZER. HD: Why is the bat in the freezer? Me: Thats where the exterminator told me to put it until i figured out where it needed to go to get tested. HD: TAKE THE BAT OUT OF THE FREEZER! Me: Okay. What do you want me to do with the bat? HD: Um, hang on, I need to talk to my supervisor. Me: ? A few minutes later HD: You need to call the SPCA and have them euthanize the bat and then send it to Columbus to get tested. Me: Okay. HD: Is the bat out of the freezer? Me: Yep. HD: Okay, give them a call. Good luck.

Wow. So I called the SPCA and they said they will come and pick up live animals that require rabies testing. At this point, the poor [potentially rabid] bat has been bagged, beat with Diet Dr. Pepper, frozen and thawed. My belief that it is still alive is fading. I put it on our front porch and wrote on the bag "The Bat Is In Here". Hopefully they will just swing by and grab it, no questions asked, and then call me in a week and let me know that everything is fine. More hopefully, we can wait to get that call before going through the process of rabies testing! More to come on this as it unfolds....

In other news, it looks like the pseudomonas is gone (knock on wood)! The culture that the clinic did on Tuesday came back clean so far, though its not final yet. Of course I had to call them today and make sure that it was safe for Drew to get rabies vaccines if need be, but as far as bacteria goes, there currently isn't any living in his airways.

I'm getting ready for the walk not this weekend but next. I've finally raised over $10,000 and as a team we've gotten more than $15,000. I'm hoping when all is said and done that we're over $20K. I guess time will tell. Hopefully at the end of the month our lives will settle down a little. It seems like this spring was just one adventure after another and I'm ready for a break. At least its Friday!

Wednesday, May 11, 2011

More Success!

I haven't had a minute of downtime in the past week to even post what I've been up to. Late last week, we decided that Ella and I were going to drive back to Pennsylvania for the Sicilian Dinner Buffet that friends of ours we're having for Drew. I have to say that I am SO glad we went! It was an incredible night and we raised close to$ 3000 for our team. The outpouring of love and support from our family, friends and complete strangers was unparalleled.  I have pictures to share but i'm sitting in my car typing this on my phone while I wait to pick Ella up from school, so I don't have them with me.

Our walk is only 2 weeks away and our fundraising is going so well. Our team has raised around $15,000 and i'm still hoping for more.

Hopefully later this week I can find 30 min to sit down and write more about all thats been going on!

Tuesday, May 3, 2011

The benefits of the patient registry

Tomorrow is the last day we will be waking up at 6am to administer IV antibiotics, and we couldn't be happier. We are so not morning people. I was blessed with 3 good sleepers, and our days typically begin around 8am and end, for the kids, by 8pm. Waking up at 6 for the past two weeks was not pleasant for anyone involved. That said, I'd take it over being in the hospital any day. We have a follow up appointment next Tuesday, and hopefully will get positive results. This past oral culture that showed the pseudomonas was the first positive throat swab we've seen. The pseudomonas was originally picked up with a bronchoscopy, so until we see a clean bronch I won't be convinced its gone for good. I hope though. I really really hope.

I got some great fundraising ideas from another CF mom whose blog I follow, and we've been raising TONS of money for CF. My team nationally is up over $12,500, and I am personally responsible for $8,000 of that. I have another $1400 not banked yet, and I know my parents have received over $2000 in checks from their friends. This weekend, friends are holding a Sicilian Buffet Dinner for our team, and at the end of May I'm having a garage sale with my neighbor (more to come on that). That will be our final 2011 fundraising event, and hopefully get us close to our $30,000 goal. Every little bit counts!

I've been on a number of national team conference calls and have gotten so many great ideas on fundraising and rallying support. This year I made a big push for the past 4 months and if I were my friends and family, I'd be annoyed with all of my requests and persistence. I make no apologies though, as my fundraising has been a huge success. This upcoming year I'm going to spread things out a bit more. It will all go toward our team and our goal, but it won't all be at once. I ask for you to bear with me. Don't hide me on Facebook. Instead, help me! Embrace my mission and my efforts. One day, soon I hope, you will all be able to say that you contributed to the cure. Your $5 or $500 helped to fund the research that will save Drew's life.

I met another mom today who contacted me through the blog and has a 5yr old son with CF. He also has the same mutations as Drew. That's two CF mom's that have reached out to me in the past month, looking to share their story. The CF Foundation, over the past 5 years or so, has worked to create a patient registry where information is collected and shared with the purpose of helping doctors identify similarities in patients with the same mutations and ultimately get a better understanding for and cure for this disease. Equally as important, in my humble opinion, is connecting patients or parents of patients with others who are going through the same thing, trying to understand and find similarities between their children who have these matching mutations but so so very different symptoms. There is no one on earth more motivated and diligent when it comes to finding answers to heal a sick child than concerned parent. We gave the power to the doctors and researchers when we signed the agreements to have Drew become a part of the patient registry. But I want the power. I would sift through that data every night trying to find something, anything, that might provide an insight. Since I know that ain't happenin', I'll do what I have to do to connect individually, one person at a time, with others who share Drew's mutations. I'll connect with others who don't share Drew's mutations. You can learn so much from other CFers - therapies that work or don't work for them, their airway clearance methods, different routines they have and suggestions for how to keep germs out and fat in.

Its almost 10 now, time for the last IV dose of the day. Tomorrow we can go back to "normal". Hopefully its a long time before we have to deal with any of this again!