Friday, June 3, 2011

Ten Years Ago Today ...

I met Bill and Laura O'Donnell and their daughter Shannon six or seven years ago when they volunteered to help staff a PHA table at an event at Tufts Medical School.  Over the years our paths have crossed at PHA conferences and various Boston events and I've followed the family's activities through their support group, telephone support line, mentoring and other leadership and volunteer activities.

Yesterday, Bill posted an essay to the PHA support group leader list serv marking the tenth anniversary of Shanon's diagnosis with pulmonary hypertension.  He titled it Ten Years Ago Today. I found it inspiring and, with Bill's permission, am sharing it with you.

Godspeed and thank you to the O'Donnell's.
For many Americans 2001 will always be memorable year. This goes for me as well. Most Americans will remember 2001 because of the tragic events of September 11. The day that makes 2001 memorable for me is May 31. May 31 is the day the world stood still and Shannon was diagnosed with Primary Pulmonary Hypertension. It is a day that changed life for Shannon, Laura and I forever.

Shortly after diagnosis, Shannon started on a continuous intravenous medication called Flolan. I believe Flolan saved Shannon’s life. In 2001 it was the only medication approved by the FDA for the treatment of PH. Today there are over ten medications. Flolan has to be kept cold. It only has a half life of three minutes which meant any interruption could cause a PH episode. About two years ago she switched to Remodulin, which has a half life of 3 hours making it safer. It used the same pump and does not need to be kept cold. In April 2011 she switched from her original pump, CADD, to a Chrono 5 pump. The Chrono 5 pump is much smaller and lighter pump. She is also on several oral medications. Doctors believe combination therapy may be the best treatment available. I still hope and pray for a cure other than a double lung transplant.

How do you represent ten years? To some ten years is a decade. To others it is a half score. To me ten years is represented by three thousand two hundred eighty five mixes of life saving medicine. (8 years of Flolan, 2 years of Remodulin) This includes 2080 AA batteries, 3285 cassettes, 6570 needles and syringes, 32,850 alcohol wipes, and 328,500 ml of diluent which is equivalent to 164 two liter bottles of tonic or 87 gallons of milk. The average mix takes about twenty minutes which means 65700 minutes or 1095 hours or 46 days have been spent just mixing medicine. This does not include other time required for Shannon’s care.

During the past ten years, we have welcomed one member into our immediate family, Matthew, and many into our extended family. Sadly we have also said good-bye to several family members including Anna, Alice, Anita and Marion (four out of five of Shannon’s grandmothers), Grandfather (Ray), Uncle Tommy, Aunt Barbara and Uncle Jim.

Over the past ten years we have personally witnessed the best in humanity. On a large scale Shannon was granted a Make-A-Wish trip. She trained dolphins and fed Shamu. We stayed a special resort called Give Kids the World which was founded specifically as a place to stay for kids fulfilling their wish to the Orlando area of Florida. Shannon has also been blessed to be a camper at The Hole in the Wall Gang Camp, THITWGC, founded by Mr. Paul Newman. Paul’s vision was to provide a place where seriously ill children could be kids and raise a little hell. This summer will be Shannon’s eighth and final year. She is already talking about being a counselor.

We have attended countless shows through the generosity of others. These include performances by the Boston Ballet and the play Wicked, which Shannon loved so much she downloaded the sound track the very next day. We also attended several sporting events and met several Boston sports stars including Jason Varitek, Josh Beckett, Tim Wakefield, Big Papi (David Ortiz), and Raymond Borque.

I have attended more concerts in the past few years than the rest of my life combined. It started out with The Cheetah Girls with Ali & AJ. Next was the Jonas Brothers, my ears are still ringing from the sound 18,000 girls screaming at the top of their lungs in the Garden. This includes Shannon; you would never know she has a lung disease if you heard her scream. Just to change things up we attended a DropKick Murphys concert after Shannon filmed a public service announcement for Children’s Hospital with Ken Casey and Scruffy of the band. Honor Society was next. Most recently Shannon and I attended a Ke$ha concert at Babson College which was a standing room concert. We arrived early and wound up in the second row. We lasted two songs before I made Shannon and her friend move to the back. Although I joke about the screaming girls at the Jonas Brothers and all but being crushed at Ke$ha I will cherish the memories forever! At times I even feel sorry for dads who never have these experiences with their daughters.

This outpouring of generosity to us only makes us want to give back to the community. We have shown our appreciation and support to Children’s Hospital by raising money through its Miles for Miracles program, allowing Shannon’s image and words to be used to promote the hospital and perhaps most importantly donating blood, something everyone should do, to help patients in need. The staff of THITWGC knows all they have to do is call and if we are available we will be there to help out doing whatever is needed. Sometimes this is just being at camp on opening day to support parents who are dropping off a child for the first time and have not come to realize what a special place camp is.

Another organization that we have come really to appreciate is the Pulmonary Hypertension Association, PHA. PHA seeks a cure and prevention of PH. It provides hope to PH patients and their families. PH has given us hope with dealing with Shannon’s illness. In return Laura and I assist the organization by being mentors, help line volunteers, parent advisory members and assisting with the bi annual conference.

In thinking about this ten year anniversary I started to hum Thanks for the Memories. The song Bob Hope would sing at the end of his shows. Although I do not feel the end is near. Here is my version.

Thanks for the Memories, 10 years

Thanks for the memories

It’s been ten long years

We’ve stood and faced our fears

We were newbies

Now were oldies

We’ve even shed some tears

How terrifying it’s been!

Thanks for the Alphabet

Test like EKG’s

RN’s and MD’s

The CHB (Children’s Hospital Boston)

The PHA (Pulmonary Hypertension Association)

The THITWGC (The Hole in the Wall Gang Camp)

Especially U!

We’ve had our ups and our downs

Sometimes we’ve even gone round and round

Thanks to you we’ve never hit the ground

We shall not rest

For a cure is best

Here’s to the future

Days without mixes

And concentrator hisses



Docs with all the fixes

How wonderful it will be!

As we celebrate this tenth anniversary I want to thank you for whatever you may have done to make Shannon, Laura and my life more bearable. Even if this was just to say a prayer or wish good thoughts on us. Please take a moment today to thank God for all of the blessing He has bestowed on us. Tomorrow I ask that you once again keep us in your prayers as we head to driving a car, high school graduation, college and many, many more years. And of course do not be afraid to ask Him to provide a cure.


1 comment:

  1. This is beautiful! Shannon and her family will be in my prayers.