SPECIAL THANKS

THANK YOU TO MR. DON HILL of the Volusia County Children's Cancer Foundation, Inc. Mr. Hill visited Lia today, and heard our story. From there, he is working to help our family through this time of stress. Mr. Hill is well spoken, comforting, and caring - he took such a huge worry off our shoulder today! We can't thank him enough for going out of his way to help and educate us!

THANK YOU ALSO to PARKER'S PALS for your support and kindness. Please visit http://parkerspals.org and donate to the cause. This organization helps the families of cancer patients who are in need of anything from a shoulder to cry and support groups to help with understanding treatments and medical billing.....their support doesn't end there, so if you can, help them help cancer patients!

CONNIE NANCE & FRIENDS: Thank you so much for organizing the wonferdully successful BOWL-A-THON FOR BABY LIA event that took place on Sunday, 25 October, 2009! We are so grateful for your support! Photos have been uploaded at Lia's website: http://liawarrensfordfund.weebly.com

Just a reminder the Bowl a Thon for Baby Lia Warrensford's Cancer Fund is this Sunday, October 25th, 2009 from 1-3 P.M. at the Airport Lanes Bowling Alley in Sanford.

The cost is $20 per person, or $40 per family and INCLUDES SHOES, BOWLING, PIZZA, AND SODA!

The bar will be open, there will be door prizes and 50/50 raffle and face painting for the kids. Come one, Come all and bring a friend. Looking forward to seeing everyone.

Get more information at Baby Lia's website:

BABY LIA CANCER FUND

Take the FUNDRAISERS menu link.

A FAMILY UPDATE & SOME GOOD NEWS!

HELLO EVERYONE!

It has been some time since I have updated Lia's blog, and for that I apologize. Often, when there is a cancer patient in the household, we tend to forget about the other children in the family and focus on the baby and her needs.....

But we are trying very hard to keep up with the interests and needs of the other kids in the house too. It's been hard, having 2 more little ones move in with their mom and dad. 9 people in the house makes for a lot of work! But it is worth it.

Delanie, our 4 year old, has been a real champ about having her 2 nieces move in and she is devoted to Lia. She is sharing her bedroom and toys with Zoe who is now almost 3 years old! They have their spats of course but for the most part the kids have really adjusted well to the changes in their daily lives. We could not be prouder of Delanie, who went with us on the recent trip to colleges for her big sister, Lacie. Since Lia had chemo and and MRI scheduled we didn't want to burden Cassie & Ed with having to babysit for a week! She sat through info sessions and did all the campus tours right along with us and was on her best behavior the whole time. So many of th staff members at the schools complimented her on her excellent behavior!

Cody is 16 now, and a high school sophomore with all that brings with it - girls, dirt bikes, and hunting season! He is even showing an interest in the high school wrestling team these days, and was on the homecoming float building crew for the sophomore class. Cody is enjoying having his brother in law live with us - since he and his father Norman are seriously outnumbered by females in this family! Ed spends a lot of time with Cody, and for that we are thankful.

I also have to thank Cody's favorite uncle, Scott, for all the time and attention he has shown Cody all summer and now into the fall hunting season.

Cody is particularly attached to his Uncle Scott and spends as much time with him as possible. Scott is always available for Cody, even though his own work schedule is daunting. Thanks, Scott...it means a lot to us.




Another BIG thanks goes to my mother, Anna, for the assistance wherever needed. She has been helping us when the money gets tight with the grocery bill! She has been helping Jessie when she can too, and we want you to know how much we love you and appreciate what you do for us!

Thanks Mom!!!!

Lacie is now 17, and we have been gone for a week visiting with admissions and coaches at three colleges out of state. This is why the blog and website for Lia have been behind in getting updated! It was a whirlwind tour, and we had to do it on a shoestring budget- but Lacie never complained about the lack of funds. She is excelling in academics (National Honor Society) as well as in her sport, fastpitch softball. As a pitcher on both her varsity high school team and her travel ball team she has a full schedule. In addition she is a member of AVID, is taking advanced placement (AP) courses for college credits, and is on the yearbook committee. Add to that the pressure of choosing a college and applying for scholarships and you can imagine how much stress she in under (not to mention US!). Lacie has a college recruitment website here:

http://nsr-inc.com/profile.idc?id=120410

Cassie & Ed...Lia's mom & dad, are still looking for work- ties are not good to be without a paycheck. But Ed has successfully completed his training to be a corrections officer (just in time for the hiring freeze) and also got his Commercial Driver's License. Hopefully a job will come through for him soon, before he goes stir-crazy hanging around all these babies and women all day! He's been great though- helping me with the house chores and he is devoted to his 2 little girls. Ed goes to every one of Lia's doctor's appointments and chemo treatments. Cassie of course is there too, and she helps me entertain Delanie and Zoe all day too. That's no small job!


Then there is Jessie! She lives on campus at Stetson University. Most of her education expenses are paid for because she earned academic scholarships. She has been the hardest working student I have seen. Any additional expenses that we can't afford to pay for Jessie earned herself. She is a resident assistant in her dorm, works in the library, and also scribes for another student who is handicapped. She is Sigma Tau Delta President, OSAPE President, Kaleidoscope Secretary, Omicron Delta Kappa, Theta Alpha Kappa, & 2009-2010 Resident Assistant (Emily Hall). Jessie just received the results of her LSAT test (law school entry test) and she scored a 156! We are VERY proud of her, and we need to figure out how to get her to law schools to see which ones she will apply to.

Norman, well.... Papaw to Lia and Zoe, and father to his own 5 kids. That ought to be enough pain in the neck, right? HA HA! He's got some serious health issues of his own. He's diabetic, and is in stage 4 kidney disease waiting to be put on the transplant list. He's taking 6 medications now. Yuck. But he is loosing weight to take the stress off his kidney and hopefully delay the imminent kidney transplant. He's afraid to loose the considerable time off work for the recovery period after a major surgery like that, since he is the sole income earner right now. I make fun of him when he puts on the mask for his breathing machine at night - he sounds like Darth Vader! Hee hee hee. Norman also volunteers his time as the pitching coach for Taylor Middle-High School's Lady Cats softball team, provides private and group pitching lessons for up and coming players from 4 to 18 years old, and coaches Lacie's travel ball 18 & under softball team. I think I may have forgotten what he looks like!

Me? Well, I still design the occasional website and logo graphics, but business has been pretty bad lately with most small businesses and farms hanging onto what little extra income they have. I also had to sell out most of my livestock on the farm. I liquidated the llama herd, and all but 4 of my dairy goats just as I was getting to a very good level of genetics in my herd. We made some amazing strides and won several championships, not to mention having earned multiple milking stars and impressive milk records registered with the USDA and ADGA. I was so sad to see my goats leave, and for some, I couldn't watch when their new owners loaded them into the trailers to leave. But, you have to do whatever it takes to survive. Maybe some day I can start over.

Now on to what you REALLY wanted to know! Baby Lia's progress report!

Lia has just completed her first round of chemotherapy. As you probably know already, she is on a drug combo of Carboplatin and Vincristine. An MRI was scheduled upon the completion of this first round of treatment, and we were waiting, not so patiently, for the results.

THE TUMOR HAS BEGUN TO SHRINK!

Before the chemo treatments, the tumor measured 2.8 x 1.9 x 2.9 centimeters.

AFTER the first course of drugs, the tumor now measures 2.0 x 1.3 x 2.1 centimeters!

YIPPPPEEEEEE!

This treatment seems to be working, and now Lia has a 2 week break from the drugs. However, her doctor appointments continue. She has blood work to do, an eye specialist appointment, and a regular pediatric check up. She can't have her regular shots due to the chemo drugs, and we have to get the oncologist's opinion on the flu shot. But she is doing well so far, and we hope she continues to respond postively to the therapy with a minimum of side effects.

Now we have to do our once a month DEEP cleaning, to make sure the house stays as germ free as possible for Lia. So we will be using the hospital grade santizer that we special order, and steaming cleaning all the rugs. The tile floors and bathrooms will once again be sanitized with the special cleaner and we'll be all set for her 2nd round of chemo. Oh well.... the windows needed washing anyway! HA HA! Maybe I'll even have the energy to pressure wash the outside of the house!

And please don't forget about the benefit for Bowl -A-Thon for Baby Lia coming up this weekend, October 25th from 1 to 3 P.M. at the Airport Lanes in Sanford, FL. You can get the flier or more info on this website, or visit http://liawarrensfordfund.weebly.com and take the link to the fundraisers page.A HUGE thanks to my high school friends (GO Seminole!) - especially Connie LaRosa-Nance, for spearheading this fundraiser for Baby Lia. It is very timely too, as the latest hospital bill before insurance is applied was a little ove $44,000! YIKES!

I hope this update finds each and every one of you well, enjoying your families, and we wish you the best in all that you do. Thank you so much for your prayers, kind words, and continued support.

Coni & Norman (Lia's Nana & Papaw)

HAPPY 1ST BIRTHDAY BABY LIA!

HAPPY BIRTHDAY!!

Too bad Lia's birthday fell on chemo day...no fair! But we made a pumpkin shaped cake for her to smash up last night while she was feeling better....what FUN! Lia had a very good time mushing that cake and eating the sprinkles off the icing! It was good to see her feeling a little better.

Then, since today was chemo treatment day, Lia was surprised by the terrific "BASE CAMP" staff at Arnold Palmer Hospital with a special birthday breakfast, and later a birthday cake, a big balloon and all the attention she could stand!

Sadly, Lia had to be hooked up to the IV machine to get her fluids and chemo drugs all day...but she takes it like a champ. She is feeling better, and her blood values were improved enough to have treatment this week.

Next week, Lia gets the first MRI to see if the treatments have stopped the tumor's growth or shrunk it at all. This will be a time to determine if the same course of treatment will be followed or if changes will be made.

Right now, we are focused on Lia, and her birthday. On Saturday, we will have a huge cake and just the immediate family to celebrate in style.....we had a birthday / Halloween costume party planned with all our friends since Lia can't go out trick or treating.....but since she got so ill we decided not to risk exposing her unnecessarily.

BAD CHEMO DAY....

Well, this was NOT a good chemo day.

Lia's blood values were not good. Her ANC level was down to 550....NOT good news.

In addition, Lia's hemoglobin was too low to take the chemo treatments. The doctor gave Cassie & Ed the option of letting Lia rest off drugs for a week or take a blood transfusion.


So they opted to let her rest and will see if her values are better next week. If not, it will be a blood transfusion for certain.

Lia is pretty fussy....and right now has a runny nose! But she can't have any medication to relieve her discomfort because the meds could mask a fever or other symptoms. We have a list of things that Lia will need to go to the hospital for it they occur. It is nerve wracking!

Don't forget Lia's Bowl-A-Thon benefit on October 25, 2009! Go to htpp://www.liawarrensfordfund.weebly.com and take the fundraisers link.

Lia's Weekly Chemo Update

Lia just finished her 8th chemo treatment yesterday. Her blood values are fluctuating a lot now. Her ANC level dropped again to 1173. Hemoglobin came back low again, too at 8.4 and the Potassium/Plasma was a bit too high at 5.1 - the potassium level getting too high can cause Lia's heart rate to increase too much.



Lia is very pale now, and even the nurses noticed. We hope these treatments are worth the illness it is causing. Around the 11th week of treatment, we will know if the tumor has shrunk at all, after her next MRI. Here are a few pictures of her blood work and chemo drugs being introduced into the chemo port.

PLEASE DON'T FORGET THE BENEFIT BOWL-A-THON ON OCT 25th!



















MORE INFO and PRINTABLE FLIERS HERE:

http://www.liawarrensfordfund.weebly.com (take the FUNDRAISERS link)


Lia Warrensford is a beautiful 10 month old baby girl who was diagnosed with Optic Pathway Glioma, a rare childhood brain cancer.


ONLY 5% OF CANCER PATIENTS HAVE THIS TYPE OF BRAIN CANCER. THIS TUMOR IS INOPERABLE.


Lia has had a chemotherapy port implanted into her side at Arnold Palmer Hospital in Orlando, Florida and she has begun chemotherapy to attempt to shrink this tumor, which is about the size of a small chicken egg.

This tumor will NOT go away as a result of chemo treatment. And the doctors are worried she may not even survive the Chemotherapy.


Lia will battle this tumor for the duration of her life.


Price: $20 per person or $40 for family


Date: Sunday, October 25, 2009 Time: 1:00 pm - 3:00 pm


Location: Airport Lanes, 190 E Airport Blvd, Sanford, FL32773-5404


Contact: Connie Nance
Phone: 407-792-9505
Email: cbug914@gmail.com


THANKS TO AIRPORT LANES!

Visit http://liawarrensford.weebly.com to donate securely online!

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LIA'S CHEMO UPDATE: Is a blood tranfusion in the near future?

Lia had her chemo treatment on Wednesday, and has been a little under the weather this week.

Her hemoglobin came back at 8.3 and that was not good news. At 8 or less, Lia will have to have a blood transfusion. So we are hoping that next week Lia's hemoglobin result stays the same or improves.

She is trying to be her normal "smiley" self, but she looks very tired, one eye is dropping a bit (that's muscle and nerve weakness from the chemo drugs), and she is just very lethargic today.

The doctor says we should expect her side effects to really become more apparent now that Lia is well into her treatments.

We still have about 8 weeks until we get a new MRI to see if this first round of chemo has caused the tumor to shrink at all.

Lia's head measurement was once a gain larger...that is not a good sign.

Let's hope that the next few weeks of chemo are very productive in reducing the tumor's size.

Don't forget that there is a benefit Bowl-A-Thon for Lia on October 25th!

Scroll down through this blog for details, or check the FUNDRAISERS link here: http://liawarrensfordfund.weebly.com

You can even download and distribute fliers to help us publicize the Bowl-A-Thon!

THANK you for all your kind words, cards, and donations.