The break is over. Lia began her second course of chemotherapy treatments on Wednesday. After her break from the two chemo drugs, her blood values were, of course, much improved. As the treatments go on, the blood values tend to drop due to the strength of the drugs. After the first round of treatment, Lia had to have her liver tested to be sure there was no damage occurring. Thankfully, the tests were negative on that front!
Contact: Connie Nance
Phone: 407-792-9505
Email: cbug914@gmail.com
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.
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!
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:
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.
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.
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!
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.
Well, this was NOT a good chemo day.
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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 will battle this tumor for the duration of her life. |
Price: $20 per person or $40 for family
Date:
Location: Airport Lanes,
Contact: Connie Nance Phone: 407-792-9505 Email: cbug914@gmail.com
THANKS TO AIRPORT LANES!
Visit http://liawarrensford.weebly.com to donate securely online!
Lia had 5th chemo treatment on the 2nd. We are really seeing the effects coming into play now. Lia's ANC Dropped over 500 points in one week! She had an ANC of 1148 on August 26th and today only 594!
About the ANC: If the white blood counts are too low, the child is neutropenic. Neutropenic means that the immune system is depressed, that the child is immunocompromised and unable to fight off infections. It is measured by the ANC, absolute neutrophil count:
If the ANC is >1000, the patient can live a relatively normal life. If it is 500-1000, he is entering the danger zone. If it is <500,>AGC (absolute granulocyte count).
The drug Carboplatin is the one that is likely to blame for this drop. It is very potent. For three weeks Lia will have a break from this drug, and she will only take the Vincristine. The doctor says it is possible that Lia's ANC count will recover on it's own after a short break from the Carboplatin. We are hoping this is the case. Otherwise, Lia will have to have a blood transfusion to boost her blood count.
In addition, if the blood count doesn't come up, the Carboplatin will have to be broken into multiple, smaller doses instead of one large dose. This means the family will have to make the 114 mile trip to
Lia is lethargic and weak. She can barely even hold onto us when we pick her up since the last treatment. She cries a lot now, and we are seeing changes in her habits and personality. She still lights up with smiles, but not the big grins we are used too.... it is so hard on her, and there is so little we can do for her to make her feel better.
Lia is experiencing some of the side effects the doctors warned us about. She is very tired, and looks pale now. Her hair is very thin, and every time we bathe her she looses a little more. She gags and spits up, but thankfully that has only been within 2 days of the chemo so she isn’t getting sick all the time. She has broken out in a rash around the chemo port implant, but the rash does not seem to bother her much. Before each chem. Treatment, Lia has to have blood work done. Her counts have started to show up low – both her white blood cells (neutropenia) and her platelets (thrombocytopenia). If these numbers go too low, Lia can’t have the chemo treatment until the levels are above the minimum required. Different chemo drugs have different side effects, or can cause different types of side effects in individuals. In Lia’s case, she is experiencing diarrhea. This is a concern because the chemo drugs can cause dehydration as it is. In serious cases, the doctor may prescribe a medicine to control the diarrhea. If your child’s diarrhea has been very severe, the doctor will put the child on oral re-hydration therapy to replace the water and important electrolytes lost. We are keeping a lot of Pedialyte around to make sure Lia’s stays hydrated. We have also noticed that Lia is experiencing pain in her feet and legs. This is called neuropathy. Neuropathy is nerve damage or disease. It may cause pain, numbness, tingling, difficulty controlling the muscles, or other problems. If Lia’s red blood count goes too low, she will have to have blood transfusions to return the red blood cell count to normal levels. Lia is also not eating the same foods she used to love. The chemo drugs can cause a bitter or metallic taste, so that is probably why she is changing what she likes to eat. Lia will also be having hearing tests performed, because one of the drugs, called Carboplatin, can sometimes cause hearing loss. The other drug Lia is taking is called Vincristine.
Vincristine has many side effects such as severe allergic reactions (rash; hives; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); cough or sore throat; fever or chills; hearing changes or loss of hearing; mouth sores; muscle weakness; numbness or tingling of your fingers or toes; pain in the bones, muscles, or jaw; pain, redness, or swelling at the injection site; seizures; stomach pain; trouble urinating; unusual bruising or bleeding; vision changes or loss of vision.
The side effects of Carboplatin are Low blood counts (including red blood cells, white blood cells and platelets), Nausea and vomiting usually occurring within 24 hours of treatment, Taste changes, Hair loss, Weakness, Blood test abnormalities: Abnormal magnesium level, Burning sensation at the injection site, Abdominal pain, Diarrhea, Constipation, Mouth sores, Infection, Peripheral neuropathy. These side effects may become progressively more severe with continued treatment. Hearing loss (ototoxicity) - loss of high pitched sounds, Abnormal blood electrolyte levels (sodium, potassium, calcium), Abnormal blood liver enzymes (SGOT, Alkaline phosphatase) (see liver problems), Cardiovascular events. Although infrequent, heart failure, blood clots and strokes have been reported with Carboplatin use.
