Update on Finn

Finn is doing very well these days. He had been struggling with some immunology issues last summer/early fall and after only 2 infusions of Immunoglobulins (one in October and the other in early February), he seems to be back on track with effectively fighting off opportunistic viruses and infections.

We traveled to Cincinnati last month to see specialists in the field of Bone Marrow Failure Disorders & Immunology and for Finn's annual liver & heart MRI to assess his iron load from the chronic transfusions. It was a productive and informative visit! We returned home with fantastic news concerning Finn's iron levels. His liver iron content has come down from 19.6 to 7.6 in less than a year (anything over 15 is considered severe). The nightly chelation infusions are working and we've been giddy about his progress.

The doctors in Cincinnati reiterated what the doctors in New York have consistently recommended and told us to keep Finn's hemoglobin above 8 as much as possible. It will help him grow both physically and mentally and keep his heart from having to work so hard when his numbers are low. Now that we know the iron load isn't as critical as it was last year, we are more comfortable keeping his hemoglobin above 8 and are transfusing him more frequently to do so. This means that he is receiving transfusions every 2 weeks on a consistent basis, but it is working out well for him.

He received his last transfusion on Wednesday and he looks and feels great. His cheeks and lips are rosy, the whites of his eyes are clear and he is a full of energy.

Thank you all for checking in and keeping Finn in your prayers. I will keep in touch on the blog more often! The funds raised made the trip to Cincinnati possible. THANK YOU!

Westminster Cookbook

One of my favorite things about living here in St. Petersburg is Finn's school, Westminster Day School. The Westminster family has come together to support Finn in unexpected and generous ways over the last several months. The director of Westminster, Jane Kelley, came up with the idea of a cookbook for Finn and everyone at the school came together by contributing their favorite recipes for the book. Mandy Minor worked on pulling it all together with Finn's jellyfish on the cover. The end result is amazing. Thank you to the generous Westminster family, especially Jane, Mandy and Pattie who were so selfless and helpful. I still have a few copies of the cookbook ($15 each) if anyone is interested in purchasing one. My Grandma Bryson's special recipe for blueberry bread is included!

Mr. Lee

I wanted to add a special post about "Mr. Lee" at All Children's Hospital. Lee is a medical assistant in the Hematology-Oncology Unit at All Children's Hospital. He is the first person Finn sees when we arrive at the Hem/Onc office for his appointments and he is always patient, kind and reassuring when taking Finn's vitals and doing his finger pokes. "Mr. Lee" (as Finn calls him) has been there since our very first visit back in January 2008 and Finn trusts him more than other medical professional we've come in contact with.

We nominated Lee for employee-of-the-month last year and we were absolutely thrilled that he won the award last fall. The article can be seen here.

Thanks for all that you do, Mr. Lee. Life at All Children's Hospital would not be the same without you.

puzzle man finn

T-SHIRTS FOR SALE

We are printing a second run of the t-shirts! Please let me know if you would like to purchase one either on email or in the comment box on the blog. You can pay via paypal or by check. Thanks so much. We are thrilled that so many people have shown an interest in the t-shirt.

                                           Sean Gilbert, Cameron Linton + Kevin Miller

Thank You for Making the Benefit a Success!

Bridget and I would like to thank EVERYONE who contributed in so many different ways to making the benefit an absolute success.

Over 200 people attended the silent auction and concert at Gibson Guitar Room.  Over sixty items were donated to the silent auction.  And over 40 golfers played in the event on Saturday at Dubsdread.

It's impossible to briefly describe everything everyone did behind the scenes. But, I will try.  Caitlin Barry Van Voorhis, who owns Finnhenry's, was a superhero. She booked the awesome space at Gibson Guitar Room, donated ALL libations for the bar, and had some of her wonderful bartenders from Finnhenry's work the event (thank you to Larissa + Chad). The event would not, could not have happened without the support and kindness of Caitlin.

Steven Foxbury and his band, the Battle Sigh, put on an incredible show, playing a mix of fan favorites and new releases that were outstanding.  We can't wait for the new album to be released.  We are all so incredibly to lucky to know and love Steve---a good soul with an incredible gift that brings people together, giving us music and lyrics that make life more special and meaningful.

Kim Fox and Tom Macaluso both created original works of art to help publicize and remember the events.  Kim produced the jellyfish design that graced t-shirts and posters.  The t-shirts were so popular, we've been asked to keep selling them on this blog and have found it necessary to do a second run.  The posters are part of a numbered series and there are some still available (please email Bridget if you are interested hellobridget@gmail.com).  Tom made the poster announcing the golf event and it was absolutely perfect for the event.

Kevin Miller is the man to thank for planning the golf event at Dubsdread from start to finish. It is no small task to get a group of 40 people together at 8:00 a.m. on a Saturday morning the night after a great concert.

Meredith Miller Wilcke helped by photographing Finn and producing a slideshow that incorporates video and ingenious transitions, allowing family and friends see and celebrate our son.

John Nico worked tirelessly to help plan and coordinate the silent auction. We could not have done it without John's help!

So many people and businesses (listed to the left) donated to the silent auction.

So many people also helped at the event itself: helping at the door, helping at the silent auction, helping at the booth for posters and t-shirts, helping at the bar, helping set up, etc. And everyone helped, just by being there and we are truly grateful.

Contributions continue to come in through the mail, and through paypal on this blog, from people who could not attend but want to help.

It is humbling to benefit from such a great outpouring of support.

Financially, the benefit has been a success.  To date over $15,000 has been raised.  But, more important to Bridget and I, emotionally, the benefit tells us that we are not fighting Diamond Blackfan Anemia alone.

Hundreds of people, friends and family, are pulling for us, praying for us, and selflessly giving in support of our son, Finn Gunderson, a blessed, beautiful boy who is still too young to even know he has DBA, but who will never have reason to doubt whether he is special.

Thank you, everyone.  We are truly grateful and are blessed by your support.

Pictures from the event can be seen here.

Finn's Jellyfish

One of Finn's famous jellyfish. Underwater sea creatures are all the rage in our house.

Benefit Concert + Silent Auction

We are now counting down the days! Please join us on Friday, September 10 for the Finn Gunderson Diamond Blackfan Anemia Benefit Concert + Silent Auction at Gibson Guitar Room in downtown Orlando. Doors open at 6p and the silent auction runs from 6-8:30p. The uber-talented Steven Foxbury and his band, The Battle Sigh, will perform following the auction. Cash bar provided by FINNHENRY'S aka, the marvelous, Caitlin Van Voorhis. The beautiful show poster was designed by Kim Fox. Finn loves jellyfish and she did an amazing job on the poster. Thank you to everyone who is helping make it all happen! We can't wait to see you all.

Diamond Blackfan Anemia 101

I thought I would share the basics of Diamond Blackfan Anemia to help people better understand this rare and unique disorder. Diamond Blackfan Anemia (DBA) is a bone marrow failure disorder that inhibits red blood cell production. Finn does not have the ability to produce red blood cells on his own so he depends on blood transfusions every 2-3 weeks to survive. After a blood transfusion, Finn's hemoglobin rises to a normal level and immediately begins to slowly drop until his next blood transfusion. The low hemoglobin affects his energy level, pallor and overall health.

Finn continues to do well on transfusions, but is dealing with severe iron overload as a result of receiving over 50 transfusions and counting. Iron overload can be dangerous if not treated because excess iron primarily builds up in the liver and heart and can cause serious liver and cardiac problems. Because the body does not expel excess iron on its own, chelation therapy is required to help Finn rid his body of excess iron. Every night while Finn sleeps, he receives desferal (chelating agent) through a subcutaneous needle connected to an infusion pump. He seems to be responding to the nightly infusions as we just learned that his ferritin (iron indicator) levels significantly dropped for the first time in over a year. To learn more about DBA, please check out the DBA Foundation online. (There is a baby picture of Finn on the "For Families" page.)

Golf Outing at Dubsdread

The golf outing is set for Saturday, September 11 at Dubsdread Golf Course in Orlando. Please contact Kevin Miller (kmiller1028@cfl.rr.com or 407.252.7402) for details.