Still going

We still go to Philly every quarter to get more of the trial drug. In order to do so, he still has to undergo various testing each time. Even though I still don't like it, it is getting easier because we all know what to expect.

And now we have matching 3DS' so we can play Mario together. It's so cool actually. He's usually Mario and I'm Luigi, but the 3DSs talk to each other so we are playing the same levels together. Usually, I have to protect him from things and he steals all my Racoon Leaves, but he will share with me too. We also love to play Kirby together. He's really getting good at all the platformers, and it will be a strange day when he's better than me, and I think that day is not too far off... (but it will be awhile, I mean I have 30 years into Nintendo skills over him, lol).

So, with the follow-on trial, we'll be able to keep getting the drug until the FDA approves it at which point we can get a prescription and have it delivered like a regular medicine. It gives me a bit of anxiety to think about something so important and expensive just sitting out on our front porch delivered until we get home, but what can you do.

The Cystic Fibrosis Foundation does a really successful thing called Venture Philanthropy. They take the money raised and directly get it in the hands of companies to develop drugs and other methods to fight Cystic Fibrosis. There are many other things in the pipeline that could be available to Fawkes as he gets older. The more CFTR function we can get him, the lower sweat chloride level we can achieve, the better chance he has to avoid things like Cystic Fibrosis Related Diabetes, double lung transplant, and early mortality.

I honestly cannot be very optimistic for his pancreas. It's been 5 years of scarring and cysts, I really don't think he'll ever have that function on his own. I just hope that someday he can get a pump for enzymes (similar to a diabetics insulin pump) so he doesn't have to take pills everytime he eats, but we'll see. 

I'm really not the type of person that likes to ask for help, but I can't cure my baby's disease on my own. I really need the foundation and medical companies to do what they do best and research and find ways to alter CFTR function at the cellular level.


Thanks for reading everything and remember to Donate to add more tomorrows for my son, Fawkes.

Playing with friends

Watching Fawkes grow up is really, really fun now. We've had so many upgrades just by him growing older. He can swallow pills, almost go to the bathroom unassisted, and he gets so excited about little things. We got him this umbrella at a dinosaur event. He was so happy, he carried it around with him even when it wasn't raining.

Another big milestone is learning to ride a bike. We got him a balance bike and scooter last year too, but he's really getting the hang of pedaling and braking. He loves his Lightning McQueen bike. I can't wait until we can take the training wheels off.

Of all of Fawkes' favorite activities, he loves playing with his friends the most. The corner of our street consists of several families and our neighbors are just so wonderful. Our kids love to play together and it gives all of us parents a break too! This is Tully, Rowan, Sidney and Fawkes about to collect Easter eggs.

Here's Fawkes with his favorite little girl, Sidney. They are just too cool for school.

This is Fawkes and Graeme playing Mario Kart on Switch.

Thanks for reading everything and remember to Donate to add more tomorrows for my son, Fawkes.

Brewer's Ball

In late winter, the Cystic Fibrosis Foundation hosts a really cool event called Brewer's ball. They have all sorts of breweries and restaurants come and you can sample their beer and food all night long. It was started by a father of a CF son and has been a really successful fundraising event annually. They also have really cool mobile auction where you can get things like a sous vide or artistic picture or Easter basket. My company, JRC Integrated Systems generously donated to become a special sponsor and you can see my thank you ad here.

These are my colleagues, Tony, Liz, and Jeff, from work that came out to support and have been with me since the beginning.

This is my bestie, Cori, that has come several years now.

These are my DC friends, Erik and Ali, that always come out and help us whenever we need it.

I work on a submarine program so here are a few pictures of Fawkes with a submarine....

  

...and AS a submarine (that's his periscope!)

SICK! (In fall and winter)

We had a scare Sunday night before the eclipse where Fawkes was coughing so uncontrollably and wheezing so badly, we took him to the ER. We thought it might be our first hospital exacerbation. Ultimately, they gave him an amped up Albuterol and sent us on our way. We were there until about 4 am.  Needless to say, we were exhausted by the time we finally got home, so we all stayed home the next day and Hudson made sure to get us special NASA eclipse viewing glasses.

We had a particularly tough winter this year. Both Fawkes and I were coughing during November and took antibiotics. Then, in January I fought with advanced sinusitis and ear infection for 60 long, long days and three rounds of antibiotics and steroids. In the midst of that, Fawkes was sick too. Sick momma taking care of sick baby. 

Now, Some of you have read how many meds Fawkes takes on a regular basis between his enzymes, zantac, vitamin, and trial drug. When he was sick we had to add antibiotics, tamiflu, and a steroid.  Apparently, this flu season was particularly bad because they only pharmacy in the DC area that had Tamiflu for us to fill was a 50 minute drive each way. So, Hudson got in the car and went and picked it up for the little guy.

I can't tell you how stressful it was everyday on Nunu and us to make sure he took everything and making him drink all that stuff. And of course, poor Fawkes didn't like taking all those medicines either. CVS, as usual was out of flavoring, I don't know how they don't keep that stuff in stock, but apparently, the Tamiflu was the worst of them all because Fawkes really hated it.  But, we finally got better in March…

My mom found some really pretty purple bracelets that represent the CF Foundation. Purple is their color. So for anyone that donates over $100, you too can be the proud owner of this sparkly bracelet!

So Donate today and this will be yours; they make great gifts!

If you find our story compelling, add more tomorrow's for Fawkes: Donate

Winter is coming

Fawkes loves, loves the snow! DC is a town the pretty much closes down when it snows, so everyone stays home and I work remotely. I found him a little snow shovel, so whenever it snows, he likes to shovel the sidewalk.

Another fun activity we've picked up is ice skating.We tried to do it and both Fawkes and I were not very good. Hudson is a really great skater. So, Fawkes started taking ice skating lessons. It's one where it's a parent/tot together. I actually was learning some fundamentals by taking him to the class, and I even decided to take a skating class for myself! After slipping all over the place with dull, rental skates, I even bought myself my own pretty white pair.

Yay? for winter sports... says the Floridian!?!

Treatments and playtime

Over the years, Fawkes has been a trooper doing 2 mask treatments and 2 percussive vest treatments per day every day (even more when he's sick). All in all, it takes about 45 minutes each. So, what's a baby to do while he has to be confined for that long. We've set up a cool cart, from Ikea of course, that rolls around with him, but the stuff has to stay plugged in, so keeping him entertained has always been so important. Here are a few pictures of how we try to reward him for doing it.

We play with Bristle blocks.

We play with Legos.

We do Halloween arts and crafts. 

We play Nintendo switch and Mario Kart 8.

We play Mario while watching a youtube of someone playing Mario.

We give him cuddlees.

We do Easter stuff.

As you can see, mask and vest are integral to our lives throughout the year. I am always looking for ways to keep it fun. We always make sure to stay with him too so he doesn't feel alone while doing treatments. It's so, so important to keep it as positive as we can. Fawkes accepts them as a way of life now, but he is starting to ask questions on why he has to do vest and his friends don't. Right now, we just answer, that it's for him, but someday I'll have to tell him, "You have cystic fibrosis." That conversation hasn't happened yet.

If you find our story compelling, donate to the Cystic Fibrosis Foundation to add tomorrows for Fawkes and others:  Donate

On the News!

We welcomed the Cystic Fibrosis Foundation and News Anchor, Ellen Bryan, into our home to give a bit of insight into what it's like living with Cystic Fibrosis. If you haven't seen it, Ellen did a fabulous job capturing lots of what we do in a short segment here:

https://www.ellenbryan.com/blog/the-delee-family-life-with-cystic-fibrosis

If you feel compelled by our story, please donate to add more tomorrows for my son, Fawkes here:  Donate