Good afternoon everyone,

Spencer’s door on his tomb is complete and has been put up. In fact, it was placed the Thursday before we left for Washington D.C, just 6 days after Spencer’s ^Angelversary^. It was not easy to see everything written in stone, but it is BEAUTIFUL and is a VERY NICE TRIBUTE TO SPENCER. His picture plaque has a part of most everything Spencer loved in this life. There is a picture of Spencer with our family, one of him in the mountains and one at the beach. There are three pictures of Spencer playing baseball, two of Spencer at school, one of the cross in the outdoor chapel at school, and one of our favorites of Spencer in a pumpkin patch when he was 14 months old. Spencer LOVED all of the holidays. Ray went out to see it on his lunch break and called me to let me know it was complete. I then went out to see it and really didn’t want to leave once I was there. The plaque is three dimensional, so tracing and feeling things like his eye brows and lips is so special. Ray will get pictures of it up soon.

We are back from Washington D.C.. We are tired, but overall, it was a good trip. We got back Friday afternoon just in time to pick up Hannah from camp. Before going on about D.C., we want to THANK my sister Pam and her husband Marty and my brother Keith for taking turns staying with Hannah in our absence and taking such good care of her. She loved her stay with all of you!!! THANK YOU!! THANK YOU Pam, Marty and Keith.

After recuperating Saturday including some sleep and washing all those clothes from the trip, and celebrating a belated Father’s Day with Ray on Sunday, I think we are getting back into the groove of things at home. Now for the trip. We arrived late Friday afternoon and John Paul just had to see some sites that afternoon, so we headed down to the underground rail system, the Metro. We didn’t start out the most informed about the system, but with the wonderful help of the Metro workers and D.C. residents, we learned quickly. We went to see the Washington Monument and from there we could see the Lincoln Memorial, and the Capitol from a distance. We decided to go back to the hotel for the night and start bright and early the next morning. We got really lucky with the weather. After one small down pour Saturday morning, we had COOL and DRY weather the rest of the stay, (which was quite different than the 95 degree and above weather back home). We did a lot of museum visiting Saturday and then got a phone call from our dear friends, the Barkers from California. They were in and wanting to finally meet in person at dinner. We headed to their hotel for dinner. I have to say that finally meeting them in person was so VERY special. It was strange though, in a GOOD WAY. It was like meeting people we had known for a very long time, and it was our first time meeting in person. ^Spencer and Christian^ were going through the same experimental drug therapy across the country from one another and someone from Spencer’s site asked me to contact Sandy on Christian’s site for support of one another. This simple request helped us to form an invaluable friendship. Sandy and I had spoken on the phone MANY times, especially during our boys treatments and their passing on to heaven, and we had e-mailed just as much, but to finally hug her in person and not "virtually" was so comforting. Our ^boys^ brought us together, there is NO DOUBT in my mind about this. It was so nice to finally meet Gary, ^Christian’s^ Dad, and his siblings, Garrett and Kendal. We also had the pleasure of meeting ^Christian’s^ aunt and uncle too. Sandy’s sister, Susan and her husband Brant were in D.C. representing Tennessee in getting funding for Childhood Cancer Research. We had a wonderful dinner and got to meet again the next night for another dinner with PAC2, (People Against Cancer). We also got to meet another angel’s parents at the first and second dinner. We got to meet ^Caleb’s^ parents. Caleb also died of leukemia. He died this past March, just 11 days after his fourth birthday. Lots of stories about our children were shared with lots of laughter, but not without some tears. During the day on Sunday, we went to the Basilica of the Immaculate Conception.  This was Father's Day, and this is what Ray wanted for his Father's Day gift.  We had a wonderful day at the BEAUTIFUL Basiilica.  We met some very kind people there, and the church was full of every culture at mass.  IT WAS AMAZING!!!

Monday was the day we met for our training. At this training, we got to meet angel ^Mary Kate's^ Mom and sister.  Mary Kate recently died of leukemia too.  Later during the day, a doctor from the COG (Children's Oncology Group) came to speak to us. In his talk, he threw out the 90/95% cure rate for children with leukemia again. We often hear that number, and for the life of me, we can not see how that high percentage comes about. Sandy and I just looked at each other and shook our heads. We know so many kids that have died from leukemia, and that number just seems very high from the world we live in, for the numbers we have witnessed. The only thing Ray and I can figure is that they get that number from a "certain" group of children "fitting" into a very slim category of children having leukemia. (Certain age, quick responder, certain type, etc). I never got a chance to ask the doctor about those numbers, but I sure wanted to ask him. During his talk, he also gave some disturbing news that NEEDS to be KNOWN by all. He said that the numbers of children diagnosed every year with cancer continues to grow, and the level of TOLERANCE our children have with the current drug therapies and irradiation has reached the MAXIMUM!!! Our children can NOT tolerate higher doses or any higher toxicity. They have reached the MAXIMUM ceiling of levels. Well, that was not news to any of us sitting in that room. We witnessed our children as they went through that toxic drug therapy and irradiation, and some in that room were currently witnessing their own children going through it all. For me, the surprise was that someone finally said it out in the open. He told us to bring this message to our Senators and Representatives. The only thing that will save our children is a CURE, and that will only come from NEW and ongoing RESEARCH. Current treatment is not working for all children and with some cancers it works for very few. Only one new drug has been made for pediatric cancer in the last 10 years!!! There are some interesting studies in their beginnings out there that he shared with us. Some deal with DNA, gene therapy, and some targeted therapy (therapy trying to target just the diseased cells rather than attacking the whole body as most current therapies) . All of this research is very expensive as one can imagine. MUCH FUNDING IS NEEDED!!

Retired Rep. Deborah Pryce, ^Caroline Pryce Walker’s^ mother, gave a little pep rally at the end of the night. The Childhood Cancer Research Act is named after ^Caroline Pryce Walker^, an angel that fought neuroblastoma. ^Caroline^ is the daughter of the retired representative that worked very hard with CureSearch and others to get this bill passed The bill passed the House of Representatives on Spencer’s 1st ^Angelversary^ , June 12, 2008. It was signed into a bill promising 30 million dollars a years for 5 years by Pres. Bush on July 29, 2008. That was the "FIRST" step in funding for Pediatric Cancer Research. As we learned while in D.C., just because it is promised in a bill, doesn’t mean it is funded. That is where we are ALL NEEDED!!!! Ray, John Paul and I, like 250 other people joining CureSearch, went from office to office of our Senators and Representatives pleading with them to FUND Pediatric Cncer Research. CureSearch has been at this task for about 10 years, and this was a record attending year of people (advocates) to go into these offices advocating for our children. Deborah Pryce told us to go in with passion and tell our child’s story. We went in and did just that. We shared Spencer’s story and the stories of many other children. We made it very clear that we understood that this would not help to bring Spencer back and he could not be brought back. We were there to let them KNOW what these children go through, and we were there fighting for ALL CHILDREN.. Come to find out, pediatric cancer has touched the lives of our two Senators. Each of them have family members with children that currently have cancer. Two of our Representatives are doctors and have seen what our children went through and go through. The first aide that we met with had personal experience with her father being a pediatric oncologist. One of our Representatives has seven grandchildren and really took to John Paul during our discussion. Most that we met with, Senators, Representatives, and very knowledgeable aides were very receptive to our plea. They agreed that this is not a partisan fight, it is a fight ALL can get behind. They agreed that Pediatric Cancer Research FUNDING is a NEED. We told then that we know that with the economy and the state it is in, we know there are many approaching them with hands out, but Pediatric Cancer Research NEEDS to go into the NEED column and not the "want" column when appropriating funding. Everyone was supportive in person, and now we MUST stay with them and write letters to them often to make SURE they follow through for OUR CHILDREN!!! You don’t have to be a parent of a child that has fought or is fighting cancer to write letters. PLEASE fight for all of our children. Before Spencer got sick, we NEVER thought for a moment in time that we would be facing that fight against cancer. Pediatric cancer effects everyone in that child’s life. We met with Spencer’s science teacher in the grocery store parking lot the day we got back, and he showed us Spencer’s orange bracelet he still wears everyday. As we told people in Congress, you never know if it will hit your child, your nephew or niece, your neighbor, your friend’s child, etc. Cancer knows no boundaries, (socio, economic, ethnic, etc.) It strikes at any time. We also asked them to HONOR those children that died because of cancer, SUPPORT those children fighting cancer, and PROTECT those children of the future not yet diagnosed with cancer by FUNDING much MORE Pediatric Cancer Research Funding.

Another step for Pediatric Cancer Research was taken the week we were in D.C. Rep. Joe Sestak of Pennsylvania has stepped into the shoes of Deborah Pryce (Ohio) as the voice on Capitol Hill for our children. His daughter is NED after being treated for a brain tumor. She had many surgeries and treatment, and she is currently No Evidence of Disease!  Rep. Sestak is starting a Pediatric Cancer Research Caucus on Capitol Hill. This is such good news because now our children will have a voice on the Hill everyday through some of their own. We were SURE to ask all of our Senators and Representatives to join this IMPORTANT caucus. We are following up with letters and URGE you all to do the same. This is so important. Just an example of how important a constant voice is - On our first day of meetings, we met one of our Senators in the hall way. We didn’t have a meeting with her, but we had one with her aide. We did not loose out on this opportunity to speak directly with her, so we began to talk to her. She saw our CureSearch shirts and assumed we were with Diabetes advocacy. She said, "Oh yeah, I am all behind research to help children with diabetes." We informed her that we were not with advocates for diabetes, but we were with childhood cancer, and she invited us in to speak with us. She told us she had not spoken with anyone from Louisiana about this before that moment. It was only later that we found out that one of the Jonas Brothers was there to speak to the President about childhood diabetes research. Now, we are CERTAINLY NOT wanting to take anything away from diabetes research and that cause, but we DO WANT OUR KIDS FAIR SHARE!!! Diabetes in children and adults is very serious and dangerous, and we have this disease in our own family. Again, all diseases deserve research and funding, we just want the same for PEDIATRIC CANCER RESEARCH!! It is a fact that if you combine all the deaths that occur from ALL CHILDHOOD diseases combined, including AIDS, more children die from cancer than the total combined number of illnesses. You know how much money we are fighting for this year, 27 MILLION dollars, if we can get that!!!  SO SAD, considering over 3 BILLION dollars is appropriated for cancer research. I said often during Spencer’s treatment and since then, I would have traded places with him in a second if I could have, and I AM SURE any parent would do the same. Our children need to COUNT in this life MUCH MORE than they are currently counted for in FUNDING!!!! PLEASE JOIN US in KEEPING childhood cancer research funding FRESH in the MINDS of those of the Hill that will soon be appropriating funding. Please call them, write letters to them, and e-mail them to PLEAD for funding, AND ask them to join the Pediatric Cancer Research Caucus. Tell them your stories with passion!!! They will listen. We just NEED to MAKE SURE THEY ACT on what the listen to by FUNDING pediatric cancer research!!!

If more advocates are NEEDED on Capitol Hill next year, PLEASE consider going to D.C.!!!  The MORE recognition and awareness we can bring to this disease and keep it in the forefront, the more people will pay attention to the NEED OF RESEARCH AND FUNDING FOR RESEARCH!!!  It only took one Jonas Brother to get a meeting with the Presitdent whiile more than 250 of us for childhood cancer were on the Hill!!!  Maybe with more recognition and AWARENESS of childhood cancer, the very toxic treatments of cancer and the life long physical and emotional wounds left through these treatments, our children will one day get a meeting with the President too to discuss THEIR journeys. 

Of course, WE PRAY FOR A CURE before any of this is needed!!!! 

We also want to thank all of you that sent your voices to D.C. with us.  We ended up with 35 children and their journeys.  We shared all of these journeys with everyone we spoke with and shared the books with other advocates as well.  We will be mailing your books to you this week.  I am in the process of getting those ready for the mail.  Later, in another update, I will share a God guiding this book story.  THANK YOU ALL AGAIN!!!

Trusting God unconditionally,

Love,

Joan, Ray, Hannah, ^SPENCER^, John Paul, ^MICHAEL ANDREW^, and ^MARY ELIZABETH^

P.S. Please PRAY for little Elizabeth Dunford. She is having problems with her liver and is in NEED of prayers www.caringbridge.org/visit/elizabethdunford

Also, please pray for our friend Carole suffering from some complications from a knee replacement.  THANK YOU!!