Bummer...Eli's counts are down again....

ANC 520 (This was the unofficial count, but it prob won't get better)
Hemoglobin 9.9
WBC 1.2
Platelets 158

We stayed at the clinic for a while, I was hoping that we could go to the aquarium, but Bobby came in and gave us the bad news....so, we are once again homebound or close to it.

If the official count comes in at under 500 we will actually have to suspend hie Chemo for a week or so. His chemo could be causing the counts to go down, or he could have some little viral thing brewing that we just haven't seen yet. These things are normal in treatment, but it stinks all the same. It is so hot, the only thing we can outside is really go to the pool...and we are a no go for that. I put my parents on alert for Jacob's birthday party next week. He wanted to have a sleepover and we agreed, but with his counts low Eli will have to go elsewhere.

I feel guilty complaining about being homebound for a couple of weeks....I so easily remember last summer and how we couldn't "do" all summer long.....I am very aware of how blessed we are!!!

Tomorrow is Bobby's last day at the clinic so we said our goodbys...she will be right downstairs, but it is going to take some getting used to with a new nurse. They are all so wonderful there that I really do not worry in the least about quality of care, but getting Eli accustomed to someone new will prob take some time. We will adjust and manage...isn't that what life is all about?!

I guess that is all I have to report for now....Thanks for checking in.

maria

I am thankful for my friends.

Well, we knew it couldn't last forever.....Eli's counts were:

Platelets 135
WBC 1.3
Hemoglobin 10.2
ANC 820 (This is the number that stinks!!)

So...we are inside for awhile. We went to Jacob and Sam's finale for Camp Invention and Eli had to put his mask on. Since he hadn't worn one for at least 5 months or so we were nervous that he would give us trouble, but he was a trouper and kept it on the entre time without a word!! John took the older boys to church without us. this is really where we want his counts to be (it means the chemo is working)..but the high numbers sure were fun for a while. I do worry about the winter time and cold and flu season....we will see where we go from here.

We did begin our steroids on Thursday as well, and that has been a fun ride. He is just so short tempered during these times. It is hard to remember that he is not really responsible for his actions...haha. All I can do is hold my breath and count to 50 or 100 at times to calm myself down.

Training for the half marathon in February is beginning again. Anyone interested in being on Eli's Team this year, please let me know. We really had a blast last year, even during the 13 miles walking....let me tell everyone out there...you CAN do it!!!! It was either Jane or Kendra that said this last year, "If Eli can go through chemotherapy for 3 1/2 years, you can at least walk 13 miles"...how is that for a major guilt trip?! I have to say after that statement, no one complained at all!!!!! Anyway, I would love to double our money this year to $30,000!!

Thanks for checking in. I hope your summer is going well.

Maria

I am thankful for the glorious summer that we have had.....

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....

Boy are we having a full summer!!!

We have done Vacation Bible School. I volunteered to teach a class, which was a blast as usual, so Eli got to be in his "own" classroom as well and he had so much fun. By Friday he was really tired, but having a good time. We are also doing Swim Team for the older boys this summer, so lots and lots of time at the pool. Both boys have improved dramatically in swimming over the course of the past two months, so I am really glad we pushed them to do it.

We went to Atlanta to visit the Valdes family and then brought Cher and the kids back here for the past week. WHEW!! Five kids is WAY different than three....but we all had a blast. WE went to the water park, the beach, and the Atlanta Zoo.

It has been such a full summer so far, I am starting to wonder if it is too full, but then I think about the fact that Eli and I really did nothing last summer and he and I both deserve it@@

We went to clinic last week for his LP and Chemo and all went well. His five day steroid pulse was a little hard, the prednisone definitely has a harsher affect than the Dex for us, but we will take a little bit at a time each month and smile. Eli's counts were still good with an ANC of 2100. The clinic was closed yesterday and today, so we actually got to skip a month....imagine that?!

Thanks for checking in....I will post pictures soon.

Maria

I am thankful for this great summer that we are having...