Saturday, December 27, 2008

Please pray for...

As our family celebrated the birth of Christ and our own miracle in Nick's continued remission, I received some very sad news. Our favorite rhabdo warrior pirate, Diego - age 5 - suddenly passed away on Christmas Eve He had been in the hospital with various ailments the past month and he was getting ready to go home; he was called home to be with his Heavenly Father, instead.

There is another 5-year old I've grown fond of, actually two - twins Caden & Coleman. These two are a pure delight to know through the wonderful writing of their mom Coleman also had a serious setback on Christmas Eve.

I realize this is Nick's site, to post about his journey, but I can't help but feel that while we embrace his victory in this particular battle, we have a fierce responsibility to continue the valiant fight in the war against cancer. I ask, once again, for you all to pray for these two little boys and their families. We have had an enormous outcry from many rhabdo parents in wanting to make a difference. I have re-posted some important suggestions to anyone that is considering making contributions.

To the list:

It is extremely important to make sure that our fundraising really accomplishes something. Here is an incredible example:

A family on this list raised a considerable amount of money and donated it to CureSearch specifically for rhabdo research. Part of this money is going for the purchase of special (and expensive) packing tubes that will be included in the "rhabdo kit" that goes to every Children's Oncology Group hospital. The tubes specifically protect RNA in tissue samples as RNA deteriorates very quickly. These samples will then be available to researchers who are trying to understand more about the biology of rhabdo. RNA will tell them what genes are being turned on far in excess of normal cells. These genes then become the targets for new, more effective and less toxic treatments. A directed donation to CureSearch can help fund more of these sorts of widespread benefits for rhabdo research.

Here is another example:
Private funding has partly supported two recent international rhabdo conferences. One was held in Bristol England in November, the other will be held in Seattle in February. These meetings are intended to pool international research information and to gather together basic researchers who work on rhabdo biology and clinical researchers who design new treatments. These meetings are expensive to put on, but the benefits of getting numerous researchers together face-to-face can't be measured in dollars.

However, no matter how much money we raise privately, it will never be enough. We also need to raise awareness of the toll that childhood cancer takes on society. Here's a good and easy way to do so:

I was very excited about the passage of the Conquer Childhood Cancer Act of 2008, but in this economy with so many competing demands, it will be important to make sure that Congress appropriates the $30 million intended for childhood cancer research that the Act permits. One way to make sure that it happens is to join the advocate network that pushed for this Act:

The more Rhabdo families advocating on this group, the better. Research might help kids in the future, but families struggling with rhabdo need help and support right now. I have two suggestions for donations to support organizations:

First, ACOR, which makes this list possible. It's easy to take this list for granted, but please don't! Even though the list managers are volunteers, it takes money to keep the hardware and software running for the lists to work properly.

Second, the Sarcoma Alliance The Sarcoma Alliance is the only national organization whose mission is solely education, information, and support of people with sarcoma and their families and friends. Peer-to-Peer matches people with similar diagnoses for support; Hand in Hand is the assistance fund for seeking second opinions; the Discussion Board provides additional connections for people with sarcomas.

Remember it doesn't have to be dollars you donate; it can be your time. There are lots of opportunities to help. If anyone needs ideas, please let me know and I can suggest an endless supply.

Joan, mom to Ali, dx stage 3 alveolar 9/96 list co-owner, Rhabdo-Kids (also Patient Advocate with Children's Oncology Group, and board member of Sarcoma Alliance)

Thanks, everyone, for caring.
Love Lori


Curt McCormick said...

Yes I cried at work this morning when I saw that Diego had passed, and the news about Coleman is not encouraging, either.

Thank you for all you do to help us WIN THIS FIGHT. We know who we work for at CureSearch, and we are determined to see this through.

Curt McCormick

Anonymous said...

Thank you for posting this Lori.
Michelle (Diego's Mom)

Chris Ulvin said...

Dear Nick Raitt and family
Thanks for sharing your life's journey with others and introducing us to those God places on your path. Through the birth of Jesus, God has promised us an eternity with Him. May God grant many more miracles in 2009.

Love, aunt Chris