After days of nail biting and pretending not to be worried we finally got the results from last weeks bone marrow biopsy and MIBG scan. Both were clear. Yahoo!! Herr Doctor Professor Grupp is out of the country so no particulars but the all clear is good enough for me. We are good for another 3 months.

CureSearch Praises Passage of Landmark
“Conquer Childhood Cancer Act”
by Unanimous Consent in the United States Senate

Children with Cancer and Their Families to Benefit from Legislation

July 17, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation salutes the United States Senate for its passage of the Conquer Childhood Cancer Act, which promises to significantly increase federal investment into childhood cancer research.

The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.

Wow it has been almost a month since the last post. I think I will need set a time for a weekly update or something…..
To those still keeping up with us..this is a big week. Elizabeth goes in for marrow biopsies and MIGB scans for her 3 month follow-up. She is so lively and active it is hard to imagine that the beast has returned, but then she was never symptomatic to begin with. We will post when we get results. and from then one we will commit to at least weekly updates….there is a lot to tell but that will need to be doled out in small bits as the weeks go by…

Elizabeth Lee and her family had fun dancing and jazzing at the Clifford Brown Jazz Festival listening to the sounds of the one and only Dirty Dozen Brass Band. Man did those guys blow those horns, crankin out that sweet jazz sound of New Orleans! Elizabeth caught a second wind around 10:00PM and proceeded to charm the crowds with her dramatic dance style. A good time was had by one and all!!!
Meanwhile, the children and teachers at the College School finished out their school year with style raising $800.00 from bracelet sales and the “Pennies for Patients” drive. All of that money was donated to “Bracelets for Elizabeth” making our new total over $2,500.00. We are well on our way to raising the next $20,000 dollars! Thank you College School children and staff! College School ROCKS!!!!
Be sure to check out the Children’s Neuroblastoma Cancer Foundation website, scrool down on the right hand column to see the announcement of our $20,000 dollar donation to CNCF in honor of Elizabeth and all the other children fighting Neuroblastoma.

I spent the holiday weekend in Louisiana, getting my fathers affairs in order. My Dad is moving to St. Louis to be closer to Cassie. But last month he broke 2 of his leg bones and now he is in a nursing home. Anyway, it was quite the trip. I met my sister, Cassie at the NOLA airport and the tone of the trip was set when we could not find the wheelchair accessible van in the long term parking lot. We were assisted in finding the car by the security service, namely Latoya who drove my sister and I around the airport parking garage for well over 30 minutes looking for this van. Latoya, Cassie and I filled the front seat of the Toyota pick up, but as Latoya said, we are all women so it was OK. We finally found it, in SHORT term parking and it was light blue not dark blue as indicated….

Then on the plane ride back, the engine started to have trouble. If you have ever seen the first episode of “lost”? it was like that – so we needed to return to NOLA…..

But while I was down in Louisiana my sister and stopped for a snowcone. Waiting in line was a girl of about 8 or nine years with VERY short hair and on the skinny side. So I asked her mom if she had recently had chemotherapy, and she had for, yep you guessed it, neuroblastoma. She was diagnosed at 8 years. They had been treated at both the Children’s Hospital of New Orleans and MSKCC. what a small world. But it also makes it feel like neuroblastoma is not as rare as they would have us believe.

Anyway it is good to be back with Katie and Elizabeth and Bo. Elizabeth saw Dr. Grupp yesterday and he says she still looks great, despite the accutane rashes.

May 12, 2008 (Bethesda, MD) – CureSearch National Childhood Cancer Foundation joins with colleagues on both sides of the aisle to salute Congresswoman Deborah Pryce (R-OH), longtime champion of pediatric cancer research, at today’s renaming of the Conquer Childhood Cancer Act of 2007 to the “Caroline Pryce Walker Conquer Childhood Cancer Act of 2008.”

This landmark legislation cleared another significant hurdle today, as it was approved by the House Energy and Commerce Committee. During committee markup, the bill was renamed to honor the memory of Pryce’s daughter Caroline, who passed away in 1999 at age nine from a Neuroblastoma. The bill is now clear for consideration on the full House floor.

The Caroline Pryce Walker Conquer Childhood Cancer Act authorizes funding to expand the federal support for cooperative biomedical, peer-reviewed clinical trials and research programs, which directly translate into meaningful advances in the treatment of childhood cancer. These advances improve cure rates and provide children facing cancer and their families hope for a long and healthy life.

“The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer,” noted Gregory Reaman, MD, Chair of the Children’s Oncology Group. “Only research cures childhood cancer. On behalf of my colleagues within the Children’s Oncology Group, and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders, most especially, Congresswoman Pryce.”

After the committee’s approval of the legislation, Congresswoman Pryce said, “I am thrilled with the continued progress of this bill. This legislation brings us one step closer to a goal universally shared by all of humanity – the eradication of pediatric cancer, and an end to the incalculable misery cancer inflicts on so many young lives. I am increasingly optimistic that Congress will soon give pediatric cancer the attention and resources it so desperately needs.”

The Children’s Oncology Group includes more than 5,000 medical experts in childhood cancer and treatment, located at more than 200 leading children’s hospitals, university hospitals and cancer centers in the United States, Canada, Australia, New Zealand, and Western Europe. The COG treats more than 90% of all children diagnosed with cancer in the United States.

“Despite decades of significant research progress, cancer remains the number one cause of death from disease in children. Every school day, 46 children, or two classrooms of students, are diagnosed with cancer in this country,” said Stacy Pagos Haller, Executive Director, CureSearch National Childhood Cancer Foundation.

“Each day that childhood cancer goes under-funded the road to discovering new treatments and cures becomes longer and more children die. The loss of even one more child is one too many. We are grateful for the leadership in both houses, and in both parties; passage of the Caroline Pryce Walker Conquer Childhood Cancer Act will have a positive impact on children now and in future generations.”

Today was ACES day at the lab school. Boyd brought Elizabeth down to campus by means of a bike ride, and she had such a good time she fell asleep on the bike seat on the way home.
Udaily was there to cover the day and to visit the lemonade stand that the lab school children were running to raise money for pediatric cancer research. Two weeks ago the Bracelets for Elizabeth project donated $20,000 to the Children’s Neuroblastoma Cancer Foundation.
Yesterday Boyd and I marked our 19th wedding anniversary with a dinner out, with our kids. I think we have been our just the two of us once since January 2007. The photo above is the outfit Elizabeth wore to dinner. She knows how to make quite the fashion statement.

It is like she is a visitor from a forgien land, Elizabeth finds every thing exciting, wonderful, dreadful or poignant. I am having a hard time believing she is a real child and not a Disney rendition. She is so Tiny Timesque some times it makes my head spin…..But I think that is “just Elizabeth”

Elizabeth had a great birthday! On the her birthday we brought a ScoobyDoo cake into her preschool class. Here she is blowing out the candles….That is Rory on the left, he is her right hand man and master of the air guitar.

Then on Sunday we had a family party. The weather held out and we were able to have the party outside.

The only thing that kept us from having a perfect day was worry about our friend Cole. He has been in remission since after the stem cell transplant – he and Elizabeth were buddies at AI and then they were at CHOP for transplant at the same time. But last week when he had some scans, just routine checks, but there was a bit of a question that did not get answered until late yesterday. But now we know Cole is still in remission, and so all is well. Whew!

Martha, Elizabeth and I just got back from meeting with Dr. Grupp at CHOP. Elizabeth’s test results look great!! Her bone marrow biopsy, ct scan and MIBG scan were all clear. At this point there is no measurable neuroblastoma in her body! There is a possibility that there is disease in her marrow that was not discovered but it is unlikely (only about 5% or so false negatives). In the doctor’s opinion she is back on the trajectory that she was on before the marrow disease was discovered last November. His guess (and it is definitely a guess, though an educated one) is that she has about an 80% chance of event free survival at five years. The longer she goes without a relapse, the better her odds get. She will continue to take acutane pills for the next 6 to 9 months but other than that there is currently no further treatment planned. We will go back for another bone marrow biopsy and MIBG scan in 3 months.
More good news, she is getting her central line taken out on Thursday! For the first time in 16 months she will not have tubes hanging out of her chest.

People have been saying that we must be relieved. True we are, though not the overwhelming relief I would have expected. I think we mostly just feel numb. I don’t think I have really processed the news yet. Maybe tomorrow it will sink in.

This is though, absolutely the best birthday present ever!!

Elizabeth and Boyd got home Saturday evening. Elizabeth felt pretty good Sunday. Her mood was made more festive with the arrival of a new set of dress up clothes from the Steifaters. She is modeling one of the many tutu ensembles in the photo above.

This week Elizabeth has her tests and scans on Thursday and Friday. I guess we will know next week what we are up against in terms of next steps in treatment.