Thursday - September 27, 2007

Thursday, September 27, 2007

Day +79. Only a few more days left of September...and then autumn really settles in. The county fair opens. Pumpkins fill the fields and corn mazes attract adventurous explorers. The seasons are changing. Our lives are changing. For the better, we hope.

JESSIE’S STABLE: If you want a detailed update on current events, check out yesterday’s summary of the CT scan and other diagnostics, and what they entail. She’s currently being treated for a low-level post-surgical infection of the tissues around the lower bowel and colon. A follow-up scan next week will help us assess what progress she’s making, and the next steps toward resolving this infection, which is the current challenge to overcome before discharge. Otherwise, she’s feeling better every day...taking more steps, standing and moving more, sitting up, becoming more active (she spends time on the computer for the first time in several weeks today), reading aloud, completing craft projects, engaging in conversations with her caregivers, taking oral medications as opposed to IV ones, and stabilizing other metabolic and physiological factors that must be in better balance before she can move to outpatient status. The earliest window of opportunity for discharge is about 2 weeks from now, in mid-October.

DADDY and SARAH: And we always include news about the entire family, because this journey involves all of us. Daddy’s busy with Rotary commitments today, and organizing an upcoming photo exhibit of our travels in Suffolk England last year, and working with academic clients, and getting the household prepared for Jessie’s eventual homecoming, and solo-parenting Sarah. Sarah fills her day with Honors-level classwork, saxophone lessons, helping assist in dance classes for Jenny’s younger dance students at the Ipswich Moving Company, and traveling soccer practice! Whew. At the end of the day, she and daddy wind down together. And plan how they’ll get through tomorrow and the weekend. It’s a busy time of year for everyone.

CHILDHOOD CANCER AWARENESS: Before September slips away, we want to bring to your attention that this month is dedicated to Childhood Cancer Awareness. Of course, if you read this blog, you’re aware of childhood cancer in all its gritty detail. But the question remains...what can you do about it? See below for how you can help, by contacting your government representatives...because you CAN MAKE A DIFFERENCE with your VOICE.

You know that there’s no easy solution. And that even the most common form of leukemia — the form that Jessie has lived with for 6 years...the kind with the largest body of research knowledge and historical data and the best rates of successful treatment and long-term remission — even that kind of cancer can threaten a life. You know what this journey has cost us: in financial crunches, in time living apart, in seasons of missed schooling, in days when Jessie’s life is truly at risk, and so many other tangible challenges. 

You know that we always look for the positive aspect of this experience, too, and find the best way to cope. You know, because you’re part of this journey. You are one of the blessings we have found along the way, and we thank you.

So we don’t need to overwhelm you with depressing statistics. Or hold up the face of a poster child...you’re already looking deep inside the life of one family struggling with childhood cancer. 

HELP US...TODAY, THIS MONTH...BY SUPPORTING THE CONQUER CHILDHOOD CANCER ACT: Today, we are asking you to do more than pray.

Instead of depressing you with grim facts...such as mortality statistics, or the realization that childhood cancer is the leading killer of our children...more common and more fatal than all other childhood diseases combined...instead of focusing on negative stories, we want you to leave this page today with one positive thought. YOU CAN CHANGE THIS TREND. You can make a difference. Today. Now. By making the decision to act. 

You can use YOUR VOICE and YOUR REPRESENTATIVE’S VOTE, to change the lives of children with cancer! Speak out (or write, in this case) to GOVERNMENT REPRESENTATIVES, and tell them to support putting more resources to work in this field of research and treatment. 

Specifically, please visit the Children's Oncology Group website (of which Dana Farber and Children’s Hospital Boston are members), also called curesearch.org, and SEND online letters of SUPPORT to MEMBERS of SENATE and CONGRESS.  There’s a direct link provided to help you figure out who your state and federal representatives are and to assist you to contact them online.  Ask them to support the Conquer Childhood Cancer Act of 2007, which would allocate $150 million in federal funding for research and clinical trials over the next five years. Specific to pediatric cancer, which is routinely ignored or under-funded, since it is much more rare than adult cancer (though it’s the leading threat to the lives of our children, occurring in 1 out of 330 children, averaging 12,500 new diagnoses each year). Write today and tell your Representatives to pass US House Bill # HR 1553. Tell your Senators to pass US Senate Bill # S911. 

Your voice is essential. Right now, research FUNDING is being CUT. Just when we are poised to make advances, support for pediatric cancer research is in danger of declining. Without sufficient support, they may close up to 20 clinical trials and set back research by several years. 

MORE REASONS to SPEAK UP and ASK YOUR REPRESENTATIVE to SUPPORT THIS BILL: To friends and family who follow Jessie’s journey: your voice, and your representative’s vote, can fund hope for a new generation. This new generations’ names are below...those in need of a miracle, those we remember, and those who are living beyond cancer right now, giving back to the world. And children like Jessie, who continue to live with the presence of cancer, and its aftermath, every day...but mostly...continue to LIVE.

LIVES AT RISK RIGHT NOW: You have seen the names on our prayer list. For Mary and Grace and Max and Matthew and Lia and Jenna and Leo and Abigail, this research is critical. If they live, it may be through miracles, since research and treatment protocols haven’t yet offered them sufficient hope of survival. They are living with rare forms of cancer. And each of them, right now, is literally praying for a miracle and a reason to continue hoping. Their lives are at risk, right now. Right this second. They DO need PRAYERS...because federal funding for research will come too late to save them. 

LIVES ENDED TOO SOON: Never forget the children who have passed away because of childhood cancer. Our personal list starts with our roommate Luis. And continues with Emily Q. and Emily D., Tim, Robbie, Ray, Lucy, Brittany, Matthew, Caleb, Shawn, Katie and Julia. Over the past several days, this community added Meghan, Charlie and Gus to the circle of those who have gone away too soon. Every child’s life, lost to cancer, is one too many. And a reason to act.

CAUSE for HOPE: Every child’s life saved is another reason to act. If you need a picture of hope...someone to make you believe that we can save lives and make a difference against childhood cancer...look at Jessie. She has overcome it three times. 

If you’re from the North Shore, and you live in our town, then you know: Matt Ashley and Kassie Jernegan and Sarah Atkinson in Ipswich. That’s 3 other young people in our hometown, besides Jessie, who have “graduated” from treatment for childhood cancer. They are thriving due to the research and treatment developed by Dana Farber in cooperation with other research groups, through decades of lab work and application in clinical trials, through generations of children who have now grown up to become adults. 

And look at the partial list of surviving children who are alive because we have challenged cancer, and sought to overcome it. These are children who have finished treatment. Give thanks for the lives of Molly, Katie, Devin, Kyler, Jake, Tyler, Isabelle, Bella, Lindsay, Zach, Chelsie, Hannah, Brian, Catalina, Darian, Idonia, Sarah, Nicholas, Savanna, and so many others! 

These are the names of children on treatment or living through/beyond transplant: Hannah, Sydney, Drew, Christine, Michelle, Fernando, Elliot, Matt, Joseph, Ethan, Juan-Martin, Zachary, Jinny, Ali, Holly, Kyleigh, Gage, Stephen, Paris, and so many others. 

If we have missed anyone, please know that you are always part of our community, and you are honored here in spirit, too.

Even adult staff here at Children’s Hospital Boston are beneficiaries of advances in care for pediatric cancer. The children who have lived through cancer are now growing up to save the lives of a new generation. Including our daughter. One of the 6North nurses, Lindsay, was a patient here just a few years ago. Other nurses (and doctors) in the oncology and transplant unit are now returning to the oncology field, after they have lived through it themselves as children or young adults! Jessie’s pediatrician, Dr. Michael Woods, was treated at the Jimmy Fund as a boy, and then completed part of his residency at Children's and Dana Farber, while studying medicine at Harvard University. 

PLEASE ACT! Contact your representative by using the information above. Add your voice to this cause. It is measured in children’s lives...those lost and those saved.