Tuesday, January 31, 2012

This is what donations to the CFF can do . . .

For those of you whom have ever donated to the Cystic Fibrosis Foundation, THANK YOU. Your donations have the potential to find a cure for CF, and this is proof. Today the FDA approved Kalydeco, the first drug aimed at treating the underlying cause of CF, not just lessening the symptoms. This drug is as close to a cure as we've seen. This approval comes 3 months earlier than was expected and is causing all kinds of excitement in the CF community. This is a very happy day for some CFers but a bit bittersweet for the majority of us, the 96% of us who don't have the G551 genetic mutation that this drug helps. Unfortunately, Olivia is not in the 4% of the CF population that has this mutation, thus this drug won't help her as it is currently. However, this still provides us with hope and the reality that a cure for her is possible, given more time, money and research. There is currently a phase 2 study of Kalydeco combined with VX-809 aimed at helping the other 96% of CF patients, like Olivia, with promising results thus far. So I won't be celebrating, jumping for joy or throwing all of Olivia's treatment equipment and medication in the garbage just yet, but I am joyful for those CFer's that have a chance at a normal life now because of Kalydeco and I am hopeful that the CFF will find a cure for Olivia too. So for all of you whom have donated to our current Climb for a Cure event coming up on Saturday or to any of our past events, I sincerely thank you. Your donations have provided the reality of a "normal life" for 4% of the CF population today, and that is something great that you are a part of.  I hope I too can one day jump for joy, celebrate and dance in the street with pure elation like some CF patients and families are doing today because my daughter has been cured. This exciting news has renewed my hope that it is possible.

Thank you to those of you whom have joined Team Olivia Oltmans and will be climbing with us on Saturday and thank you to all of you whom have donated to support our efforts. This news of what the CFF can do and what is possible for Olivia's future will certainly make my climb up those 1280 steps a little easier!

Here's the link to the Kalydeco information posted on the CFF Website today: Kalydeco

Monday, January 23, 2012

1 step forward . . . 2 steps back

Olivia started off on the right track with a good weight gain the beginning of this year but now just a few weeks into it, here we are, heading backwards.

Landen ended up getting sick last week and even with keeping the kids separated for days, increased infection control measures and washing everyone's hands until they were so raw and bleeding, Olivia ended up getting sick too. So we increased her therapies and kept an eye on her but after a few days she developed a fever, a terrible constant cough and was becoming less of her spunky self. Landen developed croup and given the viruses that cause it, the doctor prescribed tamilu for Olivia to help lessen the severity of the symptoms. It's now day 6 of her being sick, she's doing her therapy 4-5 times per day, for a total of 2-2.5 hours each day, and still not showing much improvement. Her cough is so persistent that she's vomited just from coughing so much. Needless to say her appetite is little to none with it even being a big challenge just to get her to drink fluids. We've been in constant contact wit the CF clinic and on-call pulmonologist but given that what she has is more than likely viral, there isn't much else we can do but wait it out and pray it gets better before it gets worse. Seeing Olivia so ill breaks my heart and makes me feel utterly helpless and extremely afraid because you never know what will happen with CF.

Today was her "weigh-in" day, of course I knew it'd be bad because she's sick. Last week I weighed her and she was 25 lbs 13 oz. Today she is down to 25 lbs 2 oz. So in a little over a week, she lost just short of a full pound. All the hard work we put into getting her to gain weight over the past 2 months has been compromised because of her being sick, in just 6 short days. This is the reason it's so important for her to have a BMI near the 50th percent for when things like this arise, so she has some weight to fight these illnesses off with, without falling off the charts completely. This is also the reason with CF that lung infections can be referred to as "life-threatening" because there are instances when you don't have the calories, energy and weight to fight these nasty infections off that your body just can't recover and you lose your battle with this disease. So thus this is the reason we keep fighting this disease every day of our lives because nothing else but a cure is good enough. Every single day a life is lost to cystic fibrosis; ever day. The reason the median age of survival for someone with CF is 37.4 is because we lose babies and children to this disease that keep the average down. It's on days like this that I feel helpless, but I keep fighting and moving forward and do all I can to help Olivia beat CF one day at a time because that's all I can do. So all of this is why I fight CF, why I do the stair climb, the great strides walk and whatever other events I find that I can participate in because every single dollar I can help raise for the CFF gets us better care for Olivia and one step closer to a cure.  I will not stop fighting because I do not want to be a parent to lose a child or adolescent to this disease, we will overcome this and I continue to pray and hope that a cure is found sooner rather than later.

Monday, January 16, 2012

A new year . . . here we go!

We are already a few weeks into the new year and I still can't seem to figure out how that happened so quickly! With the ringing in of the new year, we are hoping that 2012 will be a blessing for us all. Olivia has started the new year off right by picking up on her weight gain and hopefully she can keep gaining weight at a reasonable pace. Next week we will weigh her again to see how she's done this month. Thankfully she hasn't been sick since Thanksgiving so that has been a blessing in itself and I'm sure that helps with her weight gain too, not having to use up those precious added calories to fight off illness.Olivia has taken to calling me "mom" now, just plain old mom, not even "mommy" anymore, which really makes me realize how fast she is growing up, way too quickly for me that's for sure.

In just a couple more weeks, we will start off our 2012 CF Fundraising campaign to benefit the CFF, the first of a few events we will attend this year. On February 4th, Jeff and I will be participating in the Climb for a Cure event. I'd like to especially thank everyone who has donated to our efforts so far, for whom without you we wouldn't be successful in our fundraising, also those of you whom have joined our team and will be climbing with us and of course my sister Darci who each year so graciously watches Landen and Olivia for us so that Jeff and I can participate in the event. This is by far my favorite CF event that we partake in, which doesn't make too much sense beings it's also the most difficult! I like the climb event because it is the very first event that I signed up for after Olivia's diagnosis. I remember sitting on my couch in our old house in Forest Lake after we got Olivia home from Children's Hospital, still half in shock over the whirlwind that my life had taken and wondering what it was I could do to start fighting this disease. So I logged on to the CFF website and found this event and I just knew it was something I could do for Olivia no matter how much of a challenge it would be. I also remember, and will never forget, the event fell just 1 day after Landen's CF sweat test that came back in the "gray" area that devastated us even more. I remember I was going to throw in the towel as at that moment I was neither physically or mentally prepared to climb 1280 steps after the day we had, wondering if our son too would have this disease. But Saturday morning came and I got dressed, still couldn't eat or drink but still Jeff and I went down to the climb and we did it, climbed all those stairs being dehydrated and malnourished from lack of food or water the previous day and very much sleep deprived but I wanted to prove I could do it and that no matter what happened with Landen I couldn't and wouldn't give up on fighting CF for Olivia. In my heart as I was climbing all those flights of stairs, I knew that I would not be doing this event for both my children, and thankfully I am not as Landen of course doesn't have CF. In the end I was so glad I went and did the climb, to honor the people who donated to me and to start my fight against CF from the get go. So this event will always be my favorite, for what it represents and for what our family overcame that rough first year of accepting CF into our lives. So as we kick off 2012, I hope this year will be our best fundraising year yet and I look forward to all the new developments the CFF will achieve this year for advancing Olivia's care and the drugs to get us a step closer to a cure. Thank you again to those whom have donated and joined our team!

Happy New Year