Tuesday, September 18, 2012

September 18th Update

Wow, it's been 13 days since my last post!!!  So much as happened since then.  We'll start with Briley first and then the walk.
Briley's had a couple of CBC's since my last post.  She actually had one today.  Her ANC is 2100.  That is good, but not really.  With a high ANC, we really don't have to worry about infections being as serious as in low counts, but in the world of chemo & leukemia, her ANC needs to stay anywhere between 750-1500.  Most relapses happen when the chemo doesn't keep the neutrophil count suppressed, so most relapses are seen with kids with high ANC's during maintenance therapy.
Now, we are not thinking that Briley has relapsed.  I don't even want to think about it.  We need to get her ANC down to acceptable levels.  So, if her ANC is still high at her next Oncology appointment on 10/4, her nightly chemo dose will be increased.  I don't quite understand why her ANC has been level since the start of maintenance, with the exception of the wreck, and now it's getting too high on the same dose.  It pains me to give her chemo every night and now we are looking at increasing the dose.  It's just more poison that will be in her little body.  At the same time I realize that she needs it to stay cancer free.
School has been going great for both kids.  Briley is staying busy with this and that.  She has started dance class and will be signing up to join Girlscouts.  She also goes to "church school" on Wednesday nights.  That girl is busy busy.  
Shifting gears a little, the CureSearch Walk went great!!!! Team Briley raised a little over $6,000!!!  Eight teams joined together to raise awareness and funds for pediatric cancer research.  All together, the walk raised a tad over $30,000!!!  That is awesome!!!  I'm am very proud and appreciative of our team and everyone else that came out and supported the walk.  We had 250 folks registered to walk!  The weather was great and we are proud to be involved with the planning committee!  It was a good time had by all!  My legs are still a little sore from the day's activities.  We are looking forward to next year's walk!  I'll leave with a picture of Team Briley at the 2012 Wichita Falls CureSearch Walk!

Wednesday, September 5, 2012

Research Appeal

I'm going to get off subject just a little and talk about the CureSearch walk coming up in a little more than a week and what it means to us and every other family of children fighting cancer.  This is something that we believe in whole-heartedly because we know and we see how little funding is available for cancer kid research.  
To put it best, for every cancer research dollar raised in the U.S., less than a penny of it is directed towards children's cancer.
To put the situation in perspective:  I've mention Dr. Jensen a couple of times here on the blog and on Facebook.  He is a children's cancer researcher from Seattle children's.  He is presently trying to get FDA approval on a new cancer treatment, particularly leukemia, that will cure cancer without chemo or radiation!!!!  He isolates the patient's own T-cell from their own blood, reprograms the DNA to attack the cancer cells, and injects it back into the patient.  For 3 days, the kid may have no worse symptoms other than feeling like they have the flu!!!!  And guess what, they are cancer free!!!
How awesome would that be?!?!?!  Not only would this be only for children, but it would also be used in adults!!!  Dr. Jensen says that he's cured mice, but now want's to cure kids.  
It's a long, lengthy, and expensive process to get FDA approval.  Funding is the only thing holding him back.
Feel free to google Dr. Jensen at Seattle children's and watch the video.  It gives you chills seeing how close he is to having a cure!!!
I can only imagine Briley not having to get all of that poison to be cured.  I want nothing more in this world for this treatment to get FDA approval.  
This is only a small sample of things going on in research.  This brings us to the CureSearch walk.  95% of what we raise for the walk will go into research!  I know all of y'all have done so much for us in these past two years, but if you can, please consider giving to this wonderful charity by joining Team Briley.  Remember, you do not have to be at the walk to be on the team.  Simply sign up as a virtual walker!  I will post a link to the team page.  If you need help, feel free to email me jhostas@yahoo.com
For those of you that have already signed up, THANK YOU!    It means so much to us that you have given to combat this awful disease called cancer!
A little update on Briley - She's doing great and loving school.  She has a oncology appointment tomorrow at Cooks for count check, port flush, and doctor visit.  Please pray for safe travels and that everything remains normal. I will update again and let y'all know how the appointment went.  If you are ready this blog, I just want to say, THANK YOU!   
 Team Briley CureSearch Walk