Happy New Year TT Nation! We hope you’ve had a prosperous 2016 and that 2017 will be full of wonder and greatness for you.
As we enter 2017 we know that the CF fight is far from over for people like Trevor and our friend Patrick Robinson. They are heterozygous CFers. Trevor will be waiting for revolutionary new CF meds for a long time, heteros are one of the last groups to be helped. And because of Trevor’s super-rare mutation combo there is no chance of big/small pharma studying new drugs in his mutation combo.
Patrick has been fighting CF longer than Trevor. New cutting-edge meds did not get made in time for Patrick to benefit from them–he is now waiting for new lungs because CF is as powerful as the ocean. Please take a moment to savor good health because it is a gift worth appreciating. Hoping Patrick gets the most lovely pair of lungs very, very soon.
It is an annual tradition around here to help out with the preeminent OPL Charities golf tournament each Fall. This year’s event was held at the gorgeous Longboat Key Club in Florida. It did not disappoint.
OPL Charities is dedicated to helping issues that affect children. They are magnanimous, charitable, and the kindest people. Each year we are so honored to join the Tuberous Sclerosis Alliance as major beneficiaries of this event. It makes us so happy to know that so many children’s charities are being positively affected by this one event.
If you would ever consider attending the most over-the-top golf event, follow this link once registrations are open for 2017. You will not be disappointed. Click here.
Sunday, May 22nd will mark the 16th time we walk as a group to raise money for CF research. This year’s walk will start/end at the York High School–more space and parking–Hooray!
A giant shout out of love to Franchise Business Review and their fearless leader, Eric Stites, who is graciously matching donations for the remainder of the week. Hop on over to Eric’s page HERE if you can so we can double that donation!
If you love our work then tell the world! Stories about us from people like you will help us make an even bigger impact in our community. GreatNonprofits – the #1 source of nonprofit stories and feedback – is honoring highly regarded nonprofits with their 2016 Top-Rated List.
While we know what we are doing is critical and shouldn’t need badges, wouldn’t it be great if some new person found us and took comfort knowing we have great reviews?
Won’t you help us raise visibility for our work by posting a brief story of your experience with us? All content will be visible to potential donors and volunteers. It’s easy and only takes 3 minutes! Go here to get started!http://greatnonprofits.org/reviews/write/team-trevor
We are at 1216 Facebook likes. The last time we asked for your help getting more likes (which helps us tell more people about Trevor and life with CF) you all stepped up and helped propel us up over 1200 likes.
Today I’d make the same ask plus one: share us and donate, if you can. Why? Because the older a person with CF gets the more difficult maintaining healthy lungs becomes. More hours spent doing breathing treatments, more hours spent doing chest PT, more pills taken to combat infections, more trips to MGH to see the pros. Just more. The older I get the more I want to swear about this because I cannot believe we are still stuck with major progress for Trevor. Yet we are.
So, let’s raise some awareness. Let’s raise some donations for research. We are determined to make this happen. Insert swears here.
Visit www.facebook.com/cfteamtrevor to like us and www.teamtrevor.org to donate. We thank you tons.
What has Team Trevor HQ been up to you ask? Well let me tell you about it…
Do you remember what you were doing on December 2nd 2015? It was six days after Thanksgiving, there was Christmas music playing, lists were being made, there was lots to do. I cannot believe that this medical saga has been going on since then.
Trevor was in the hospital for 12 days. We didn’t know he was going to be tethered for this long so we let them put the PICC line in his dominant arm. He soldiered through sinus surgery on day 8 of his incarceration. Remember his throat being messed up for the following week after surgery? Yup, that also happened and it feels like a million years ago.
We had meds delivered every week from the compounding company. A nurse came by every week to take vitals and change the PICC dressing. An IV pole stood sentry in the kitchen this entire time. It has now been moved to the attic.
We went to MGH for rechecks 4 times. We said goodbye to 2015 and hello to 2016. It feels like a million years have passed. Hiss PICC line got pulled on February 1st. Only 24 days ago. Time stood still for 9 weeks.
Trevor endured 106 IVs. One hundred and six. We have aged a million years in 9 weeks.
Thank you for supporting us. Enduring this ordeal flanked by family and friends is the only way to go. We know we are fortunate to be held up by you all. And we are so proud of Trevor for his stoicism. We look forward to the day when he can enjoy modern medicine’s miracle meds…
Now that we are playing catch up on life we are looking forward to our upcoming Team Trevor events. Stay tuned for the line up–we always love to see our friends. #BeatCF
Trevor was cut loose from MGH on Friday afternoon, 9 looooong days and one surgery later. He is happy to be at home but not happy to be doing IVs here five times a day. These IVs total over 4 hours of infusion time. Who wants to be stuck like this?
And, it’s Christmas time. It looks like Christmas everywhere we go but it doesn’t really feel like Christmas here. Maybe it’s just going to be one of those years.
At any rate, here’s to hoping the massive IVs will help squash some nasties and that the sinus surgery will let air move more freely for him. Merry Christmas & Happy New Year!
Trevor had managed to stay out of the hospital since July of 2014, which is great. However, it appears we waited too long and the bugs have had a chance to take over more real estate. Trevor is now at Mass General being infused with hardcore antibiotics to combat some dastardly bacteria. He is bored. He doesn’t feel well. He’s missing lots of school. And it’s supposed to be the Christmas season. It doesn’t feel very Christmassy. Between PICC lines and chest PT, IV infusions and rounding doctors, it leaves little time to step back and be grateful for all the good things in life. Sinus surgery is on the docket for the 10th for Trevor. Here’s hoping by then the meds have started working and that the sinus surgery helps reduce the burden on his body. May good health favor you and yours–it really is a gift.
Trevor was given two honors at his high school’s Fall Athletic Sports Banquet. He received the Coaches Award for his varsity team for the 2015 season. A nice nod. He was also elected to the Boys Varsity First Team for our Western Maine Soccer Conference.
Both of these honors show what hard work and CF compliance can do. It isn’t easy. It isn’t convenient. All days include extra early wakings and late tuck-in times to accommodate breathing treatments and chest PT. Sometimes you even have to skip doing fun things that pose risk. So much of life with CF isn’t desireable. That’s the hiccup of life, you don’t get to pick and choose what giant things fall in your path. But, you do get to choose how you deal with them. Head on. With grace. And with an army at your back. Way to go, Trevor! Suck it CF.
It’s right around the corner…4 more days! Remember last year’s walk? We hope to see you at 9am on Sunday, May 17th at the York Beach Fire Station. 3 lovely miles along Long Sands Beach–walking to raise money to cure CF! For more information visit our Team Trevor Great Strides page here. #BeatCF