Drew's Crew

05/18/2023

https://fightcf.cff.org/site/TR/GreatStrides/136_Western_Pennsylvania_Pittsburgh?px=2423669&pg=personal&fr_id=9759

I'm walking in my local Great Strides event to help find a cure for all people living with cystic fibrosis. Will you support my fundraising goal?

03/26/2023

Rich Tamborski😳😂

07/30/2022

11/04/2021

Almost 16 years ago, Rich and I listened to the doctors diagnose Drew with CF, and also tell us his prognosis. At that time, the median life expectancy was 30 years old. We were devastated!

Yesterday at the North American CF Conference, the Cystic Fibrosis Foundation announced that the new median life expectancy for people with cystic fibrosis is 50 years!!!!

We’ve come a long way but we still have a ways to go.
Thank you Drew’s Crew for your support throughout the years! It’s hard to explain how grateful we are! ❤️

10/29/2021

10/20/2021

Update:
Prayers are working! Her spirits are improving. All three boys got to talk to her! That makes a huge difference. It’s so nice to hear her chuckle!❤️ We love you Ma! Norma Baker

We need many prayers for Drew’s Mamaw right now! Please pray!🙏🏻

07/16/2021

Best news ever! NO VARICES! What used to be grade 1, is now nothing! Dr is not sure if it’s Trikafta keeping everything stable at this point or what! Follow in in A YEAR to measure spleen and liver. He will get regular blood work to check for any red flags. ❤️ Thank you for the good vibes and prayers! They work every time!!

07/16/2021

No transfusion this time. He’s heading back soon!🙏🏻

07/16/2021

So far the blood work that is filtering in looks decent except Platelets and a few other things. We are waiting to see if he needs a platelet infusion before they begin.

07/16/2021

07/16/2021

Prayers and good vibes for this guy tomorrow please!!❤️

07/16/2021

Hey Drew’s Crew!
Tomorrow is a big day. Drew is heading to Children’s to get a procedure to check for varices in his esophagus and stomach. If they find nothing, awesome, we turn around and come home. If they find varices that they feel could rupture, they will temporarily fix the issue and band them to prevent bleeding. If the latter happens, we will be there for a few days/weeks. Keep Drew in your prayers please! We go in at 7:30 and he will get blood drawn 3 hours prior to surgery. If his platelets are too low, he will get a transfusion right before he goes into surgery to help his blood clot in case he needs help. So again, this may be a quick procedure, or a very serious one. We will keep this page updated all throughout the day! Please send some good vibes Drew’s way!! Thank you!

https://liverswithlife.com/what-are-esophageal-varices/

12/16/2020

Yesterday was Drew’s one year Trikafta anniversary! I wanted to give an update, but we were waiting on some blood work to come back, and I wanted to make sure I covered all the details.

One short year ago, Drew was struggling with exhaustion, constant stomach aches, severe malabsorption, failure to gain weight, and in need of a g-tube. His lung function seemed to be dropping with every visit, and he cultured pseudomonas on the regular. His PFTs dropped from 85-73 in a years time. He also suffered with sinus infections at least 4 times each year. He had just been hospitalized twice in one year, and things were just not looking great!

We were at a crossroads because Trikafta was available, but we had no idea how it could affect Drew’s already damaged liver. It was scary to think that he could have adverse reactions to his “miracle drug” and we’d be back to square one with little to no hope for a future for Drew.

Well, one year later, he is twenty pounds heavier, with no stomach pains, no malabsorption, no coughing, only one sinus infection, no pseudomonas cultures, no hospitalizations, and feeling better than ever! Aside from the normal teenage naps, Drew is rested and has more energy than we’ve ever seen him have. I can’t remember the last time I saw his face grimace in pain.

His yearly pulmonary X-rays look great, and he has not started to develop CF related diabetes yet. His doctors are very pleased with what they see!
His liver is STABLE! Although the damage that has already been done is irreversible, there have been no signs of progression of his cirrhosis. He still has an enlarged spleen from the portal hypertension, and his platelets are still low. So he has the same risks as before concerning internal bleeding.
His lung function remains in the mid 70’s, which does not really come as a surprise. The doctor always thought his lungs were healthy, but his big ol liver and spleen take up so much space in his abdomen, that filling his lungs with air is impossible, and make PFTs difficult. At this time, our only concern for Drew lies with his spleen. He still has to be careful and cannot play any contact sports, but Drew’s not really a rough n tough kind of guy anyways. He’d rather nerd out with his Xbox and his hundreds of friends.

He will go back to see his liver doc in a few months to discuss the risks vs. benefits of surgical procedures to ease the pressure in his spleen and vascular system. I will be sure to update this page if anything changes. Trikafta will continue to be his saving grace for as long as his liver can take it!

I am proud of Drew for always taking each day and making the best of it. He really is an inspiration to many for how he embraces his challenges and walks his path with grace and humor. He is such a blessing to our family.

We would like to thank everyone who has supported Drew’s Crew throughout the past 15 years. If you only knew how huge of a part you have played in his progression this past year. We are forever grateful for all the time, effort, and money you all have invested for CF research! If you own one of Drew’s seven t shirts, you know you made a difference in his life! ❤️

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PS... I forgot to mention that he is down to only one chest therapy / inhaled meds per day! 😮

06/26/2020

65 roses tattoo for his little bro Drew!
💜🌹

06/09/2020

Drew went to clinic last week for a diabetes test, liver function tests, and his yearly bloodwork for fat soluable vitamin levels. His Vit D level are low, so adjustments will be made. I think he’s spending too much time in his room, and not enough time outside in the sun! His teenage self is definitely showing more these days. His diabetes test was fantastic. It’s interesting because CF patients (especially those with liver disease) tend to develop cf related diabetes, but his numbers are perfect! His liver enzymes are also in a good range, so he will stay on the full dose of Trikafta for now. He is now 5’1” and 95 pounds! He’s growing and feeling great! He got the go ahead to start lifting weights a little to build muscle. He’s still a skinny dude, so weight gain at this point is important. He starts playing baseball this Saturday and we can’t wait to see him play! The support he gets from family, friends, and teachers is more valuable than you can imagine! Thank you for helping him live his best life! Oh! And his pulmonologist agrees that it is VERY possible that Drew has COVID 19 in March! It was rough, but he batttled through! His pulmonary function test was average for him at 77%. ❤️

05/15/2020

What is the meaning of the turtle on the front of the t shirt?
Turtle is one of a few nicknames Drew has been given over the years. He is a slow mover. He enjoys taking it easy and he’s super laid back. He is slow and steady and never gives up! He is brave and strong and will win the race! Notice the turtle shell has a DC in it. That is Drew’s Crew protecting and providing for him as he pushes through his journey. Thank you for always supporting Drew and our family! ❤️

05/15/2020

Ok DC! We still have lots of tshirts here, so I’m going to start delivery service to the peeps in my area. If you are outside of PT, I will mail yours.😘

05/09/2020

Good Morning Drew’s Crew! T-shirts and wristbands are all bagged and ready to go! Pick up times are:

Today,Saturday May 9th 3-5
Tomorrow, Sunday May 10th 3-5
Monday May 11, 6-8

Here is our address:
600 Skyline Ct.
Irwin, Pa 15642

If you are not able to pick up your shirts, please message me your address.

Thanks to all of you, Drew raised $3,786!!!