Well...Hello strangers!!

I know those of you that check this regularly thought we had fallen off of the face of the earth, but no. Things here have continued to be crazy, but a fun kind of crazy. These are a couple of pics....one of Eli and Abrielle in a really good black mail pic for later in life, and the other is of Jacob with his medal for completing his very first Triathalon!!! (For kids, of course)

We went to the clinic today and Eli's numbers were good....

WBC 2.4 (Normal 5-11) good
Hemoglobin 10.2 (Normal 11-15) Good
Platelet 135 (Normal 140-440) good
ANC 1830 (Normal 2000-6600+) Good

We played around with his methotrexate again last week looking for the perfect combo....we hope we have found it. I have been quite worried lately about Eli because he seems to be "moody" kinda like he was right before we were diagnosed. The problem with this is that he is three, and he will be moody. If it were either of my other two I would just say they were going through a little phase, but I don't think I will ever have the luxury of that kind of thinking with Eli again. So....I spoke to our great NP Lori in the clinic and she talked to me about "what relapse looks like" and really looked him over. Then she had Dr. Hudspeth come over and take a look and listen. They both feel great about the way he looks, etc. And his numbers still look good...the only problem with the "numbers" per se is that they are so skewed by the chemo he is getting that you really aren't looking at the whole picture. But both of them said they thought he looked and felt fine, so I will be semi content with that for the moment. As I told Lori when we were discussing the fact that I will worry anyway....Jan 3,2007 changed that for me with Eli...I will ALWAYS worry about what it MIGHT be with him, and all of the possibilities are enough to keep me up at night.....ANYWAY.....the clinic visit went fine....we go in next week for the long visit, he will get Vincristine, Pentamadine, and IVIG which takes 3-4 hours....oh! our really crummy news is that Bobby, our FAVORITE and greatest nurse is leaving the clinic for another job at MUSC. It is a promotion for her so we are somewhat happy, but boy are our visits going to be different without her!!! Maybe Nikki will decide to come work in clinic instead of in the hospital?!~

On a political note, I got this email today and wanted to share it.....

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.

The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatment and research for children with cancer and their families.

"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."

Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.

"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."


CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.


"The 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," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.


"On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our leaders in the Senate. Only research cures childhood cancer."


"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.

Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.



Glad to see this happen finally. As I have said before, I know that the numbers for other cancers such as breast and colon are much higher....but the amount of money that is spent on just ONE of these cancers versus the measly $30 million for ALL Childhood Cancers is overwhelming....and I really think that if these congressmen will spend just one day in the clinic of St. Judes and understand what these kids are going throough, maybe they would have done this a while back. This is not a world that I chose to be in....and I would NEVER in a million years wish this for any other family...but my eyes have been opened in a way I wish everyone's would concerning Childhood Cancer. In our own little MUSC world I have KNOWN 3 children that have died.....those are lousy statistics in my book....OK, off my soapbox now....

So...Eli is going to be one of the heros for the LLS "Light the Night" on October 16th. It is going to be at the Maritime Center downtown. It is very family friendly and only lasts from 6-8 or so....let me know if you would be interested in being on a team or just coming.....I am going to see how things go...but we WILL be there!!

Who knew I would have so much to say???? I guess next time I won't wait as long to write. I hope everyone is doing well.

Thanks for checking in.

Maria

I am thankful that we had Bobby for our nurse at the clinic during last year. WE are going to really miss her, but she was an amazing help during what was by far the hardest year of my life and Eli's....