Finn likes to throw things

Golf balls, tv remotes, food--you name it, and Finn has probably thrown it. It doesn't matter to him where it goes. It matters that its gone.



He isn't walking yet, but we're close.



Developmentally, he seems to be doing well.

Camp Sunshine

Soon after the benefit, Bridget, Finn, and I traveled to a place called Camp Sunshine in Maine. It was an invaluable experience--hard to put the right words on it.

Every other year, families contending with DBA meet at Camp Sunshine to share their experiences, questions, frustrations, and hopes. For the children, it truly is like summer camp. Volunteers come from all over the U.S.A. to give of their time, acting as camp counselors for the children, watching over them and leading them in exciting activities so that the childrens' parents can attend numerous workshops and seminars conducted by leading DBA researchers and doctors.

Being a baby, Finn wasn't ready for archery or kayaking, so a kind woman who traveled from New York to volunteer cared for Finn each day from morning until late afternoon. The instant we met her, we knew Finn was in GOOD hands. It was the first time we'd ever left him with anyone other than family. Thanks to her, we were able to concentrate on the seminars, which covered everything from ongoing research into curing DBA, improved treatment methods, and comparative analysis of DBA patients and otherwise healthy humans with regard to life expectancy, growth and development, and susceptibility to diseases like cancer. It was a whole lot of dense, complicated, and frightening information to synthesize and absorb.

In addition to the seminars, there were a few facilitated discussions that allowed parents of children with DBA to meet and share their experiences, fears, frustrations, and hopes with other people who actually knew exactly what the other parents were going through. During the first workshop, we were to introduce ourselves, describe how we learned our child has DBA, and share how we've been treating it. There were a number of stories that sounded almost identical to our own. It was difficult to keep from getting all choked up hearing story after story so similar to Finn's. Because DBA is so rare, it was the first time Bridget or I actually met another person besides our doctor in St. Petersburg who knew someone with DBA. We keep in touch with several families from Camp Sunshine and rely on them frequently for advice and support.

Transfusions Are One of Just Three Ways to Treat DBA

This photo was taken last Christmas. A few weeks later, he received a transfusion of red blood cells. Finn's veins were almost to the point of collapsing--the nurse attempted to insert the IV needle three times before getting a good connection on the fourth try. The inserts an even smaller made out of something that looks like thread. It leads out of the arm and connects to a gasket that screws onto another gasket which leads to to a tube going up to a bag of somebody's donated blood that is checked and double-checked to ensure that he can safely receive it.

The photo above is haunting. It is so easy to see all the warning signs, now. He is pale--almost flourescent--listless. That Christmas everybody observed how calm he was, how fair-skinned. We called him Buddha-Baby. He was happy, just very mellow. He wasn't eating well. The pediatrician observed it was most likely a bad case of acid reflux. We switched formulas. We tried everything. Then he began sleeping poorly. And, for the first time ever, Finn became really cranky. Bridget called the Doctor again--this didn't seem like just acid reflux. The receptionist squeezed Finn into the schedule. Minutes after the appointment began, the doctor ordered Bridget to take Finn to the emergency room at All Children's Hospital.

During the transfusion, Finn's lips grew red. The blue veins in his arms faded away as his skin became pink.

But, we did not know, then.

It takes about 10-15 minutes to get the IV all set up.

Four Months Since the Benefit . . .

This photo was taken about a month after the benefit. Finn received steroid therapy during this time.

It's been over four months since the Finn Gunderson DBA benefit--a truly remarkable night that ranks among the best nights of our lives. The response was overwhelming and Bridget and I knew then--without the slightest doubt--that we were not alone in helping Finn to live with and hopefully overcome Diamond-Blackfan Anemia.





An entire community of friends and family joined together in downtown Orlando (and those who were unable to attend were there in spirit), to support us in supporting our son. It is hard to put into words how encouraging that evening was. Whenever memories of the evening pop up--a smile, a conversation, a song--it lifts us up and gives us hope. The last four months have been challenging, to say the least, on many different fronts. Life, as you all well know, continues happening--loved ones pass away, close friends become ill, and relationships evolve. At times it has been overwhelmingly stressful and it is during times like those that we simply take it one day at a time and strive to be positive and grateful.





Finn, of course, is our main concern. In the next post, I'll explain what we've done, what we are doing, and what we will be doing to help him live with--and hopefully overcome--DBA.

Thank You to Everyone for Making the Benefit a Huge Success!

PHOTO BY MEREDITH WILCKE

What an awesome day: 8-08-08. It's difficult to put into words how thrilled and grateful Bridget and I are to all those who gave of themselves and of their valuable time to help us raise funds to help our son, Finn, fight Diamond-Blackfan Anemia. The huge outpouring of support received has lifted us up and given us much hope. It means so much to know that we are not alone. Finn has Bridget and I--and we are determined to get him the medical care he needs to fight DBA and hopefully overcome it.

Of course Finn has no idea how many people care about him so much. One day, he will.

Our thanks go to William Dunn who first gave us the idea of conducting a fundraiser for Finn. He and his wife, Jeanie, did so much more: they helped with planning and organizing and they gathered great donations for the silent auction.

Kevin and Mandy Miller also helped immensely with planning and organizing the events and thinking through so many of the details in the early planning stages. Kevin, in particular, managed the golf event and it went off seamlessly.

Dino Balani of Win Imports gave so much of himself in encouraging and orchestrating corporate sponsorships for the golf tournament.

Thank you to Lure Design who designed an enigmatic image for the concert poster and t-shirts and who screenprinted limited edition prints with all proceeds going to the Foundation. Thank you for giving your time and producing gorgeous work for the event.

A big thank you to Meredith Wilcke who photographed Finn prior to the event and photographed the silent auction and concert. Please go to her site: Finn Gunderson DBA Benefit Photos Chances are there's an excellent photograph of you on it.

And a huge thank you to Caitlin Barry-VanVoorhis for hosting the silent auction at her awesome watering hole in downtown Orlando, FINNHENRY'S.

THANK YOU to all of the gracious and hard-working volunteers and to those who gave of their time in helping collect silent auction items:
Kerrie Gill, John Nico, Lee + Stephanie Richarde, Maureen, Melissa + Emily Barton, Camy Linton, Jen Bierly, Ron Gonzalez, Daniel Barton, Henry + Heather Bryson, Kim
+ Dennis Bryson, Buddy + Susan Bell, Jen Clary, William, Jeanie + Aubrey Dunn, William + Sandy Dunn, Sandra Bianco, who not only donated two massages to the silent auction, but provided massages to the golfers during the tournament to help raise more funds, Richie Miller, and RJ Bock. THANK YOU! And thank you to my mother, Kathy Gunderson, for watching Finn during the duration of the event. XOXO

When I asked my friend, Steven Foxbury if he'd be willing and able to come all the way down from Pittsburgh to Orlando to do a show on Finn's behalf, he immediately said yes. His concert was amazing. Like so many others, he shared with us all a gift and through that gift, he's improved many lives--especially Finn's.

I want to thank Bridget for being so brave and focused on Finn's care. It is an immense job. She does it with grace and on top of it all she worked diligently behind the scenes in numerous ways to pull everything together.

I want to thank all of you.

Most of all, however, I want to thank Finn--my 10 month old son who is brave, strong, and joyful. He is a gift from God and he helped bring so many wonderful people together. He gave Bridget and I a gift for which I will forever be thankful: a real, profound sense of community and hope. We are not alone in this. We are surrounded by good people who have given so much of themselves.

Thank you all.

DBA: The Basics

The Center for Disease Control has published some good information about Diamond-Blackfan Anemia at the following link.

http://www.cdc.gov/ncbddd/hbd/dba/basics.htm

Finn is Joy Personified

Camp Sunshine

We are about to travel from Orlando to Portland, Maine to attend Camp Sunshine; it will be the first time we meet other families who have children with DBA.

Finn at Hannibal Square Fountain

Finn loves being outside and has no fear of water.

Donation Request Letter

Silent Auction Donor Form

Silent Auction flier

Here is the flier for the silent auction that will be held at FINNHENRY'S in downtown Orlando on 8.08.08.

Golf Outing Flier

Here is the flier for the golf tournament that will be held at Stoneybrook West on 8.08.08. Hope to see you all there!

Finn Gunderson Benefit

We are looking forward to the upcoming benefit on 08.08.08 and our dear friend, Steve Foxbury, will be performing at the Social with his band, The Battle Sigh! We can't wait to see everyone and to see Steve play back in Orlando!

Finn Takes in the Morning

Finn's Personality and a little about RBC

Finn is a happy baby and he is tough. He gets his finger pricked once or twice a week to get a red blood cell count and he rarely cries and, most often, he does not even wince. After he gets his finger pricked and a large enough sample of blood is drawn into a vile, his blood is analyzed by an amazing machine that--in about a minute--provides a detailed analysis of many aspects of his blood.

An average healthy individual's red blood cell count should be between 12-16. It has been recommended to us that Finn's red blood cell count should not be allowed to fall below 8.

The Goal of the Finn Gunderson Journal

The Finn Gunderson Journal will serve to keep friends and family up to date on Finn's struggle with Diamond-Blackfan Anemia, which, in turn, will help us all to know more about the disease, its treatment, and, hopefully, its cure.

DBA forces Bridget and I to live in very focused way. This blog will, hopefully, transcend all of the isolated, individual moments by stringing them together into something more linear and narrative.

I call this the Finn Gunderson Journal because it will focus on him. He is the main character and the hero of this journal. However, in order to tell his story, it will necessarily involve many other people--the growing community of people who have reached out--each in his or her own way--to help our child.

I encourage people to comment and to ask questions. This is important because the story of Finn's struggle with DBA is also, very much, a story about community. Just as Finn could not fight DBA without his mother and I, we would find it nearly impossible to ensure Finn gets the best care that we can give him without the support of all of our family and friends, the latter of which includes all of the nurses and doctors Finn visits once or twice a week.

Peace.