LIA'S LATEST CHEMO UPDATE

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.

THIRD CHEMO TREATMENT TODAY

The DeLand Beacon newspaper did an article about Lia and the family which appeared in print and online yesterday. Here is the direct link to read the article:

http://beacononlinenews.com/news/daily/1997

Baby Lia is at Arnold Palmer Hospital undergoing her long day of chemotherapy treatment. This is the third one. We don't know what to expect now as far as side effects go. She's already experiencing some, but the staff at the hospital warned us that around the third treatment we could see more side effect. Lia is already beginning to loose her pretty dark hair....it was just starting to come in thicker too. She is also experiencing long periods when she is only comfortable in the upright position, so everyone - especially Ed - walks the floors with her to keep her comfortable. I am cleaning the house again, to prepare for her coming home later this evening. We do our very best to keep the carpets and floors very clean, as well and all walls and furniture. Anything that might harbor any germs gets a thorough washing about three times a week! We are going to have to have the carpets steamed and sanitized again too. We are using a hospital sanitizer that costs $46.00 a gallon, but it is worth it to protect Lia. It takes 2 gallons to add to the carpet cleaner, and another gallon lasts us about a month to make a concentrated formula to use in spray bottles. We probably go overboard, but we are trying to make sure Lia doesn't get sick.

I have made another commemorative graphic.... this one is Lia and her Mommy, Cassie, right after coming home from the first chemo treatment. Hope you like it.

Another Graphic - Cassie & Baby Lia

Those pictures of Lia after her first chemo treatment were very emotional....here's another one of Baby Lia and her Mommy, Cassie.

NEW GRAPHIC FOR LIA

CLICK IMAGE FOR LARGER VIEW

Here's a graphic I made using a picture of Ed and Lia after her first chemo treatment....it was very powerful and I used lyrics from a song that reminds me of my own Father. I think it speaks volumes....hope you like it.

THANK YOU MR. DON HILL!!!

We've just had a visit from Mr. Don Hill of the Volusia County Children's Cancer Foundation, Inc.

Mr. Hill is such a well spoken, down to earth, caring person - I can't say enough about how kind and considerate and HELPFUL Mr. Hill was today!

Many of our concerns and fears were put to rest, and a huge worry taken off our shoulders. Our family is SO grateful to you, Mr. Hill!

SECOND WEEK OF CHEMO STARTS TODAY

Lia's second chemotherapy treatment started about half an hour ago. It will be a long day for Lia, approximately 9 hours. Last week, Lia came home very fussy and tired. Who wouldn't be after a day like that? She began getting sick in the early evening and the next 2 days were really rough on her. The joint pain kicked in by day 2 after the treatment and by Saturday morning we called the Oncologist to get advice on what we could do to comfort her. Not very much, as it turns out. We took turns holding her - keeping her in motion, giving her warm baths, and children's Tylenol according to the doctor's instructions. So we think we have a handle on what to expect for the next few days. Ed's been a real trooper- such a great Dad. Especially since Cassie has had to go back to work. Ed's been not only taking on the lion's share of Lia's responsibilities, but also helping me keep the house sanitized with the germicidal. I'm not sure how many father's could take on so much without so much as one complaint. I am VERY proud of BOTH Cassie and Ed..... but I want to make sure everyone knows how thankful I am that Ed is my son-in-law and the father of my grandchildren. We hope a new job will come through for Ed soon! Cassie is having a hard time whenever she has to go to work- leaving Lia is rough on her. But Cassie knows she is doing the right thing in the long run. She is working as many hours as she can get. The hospital bills are rolling in now....we've got 2 hospitals, a neurologist office, and the pediatric opthamologist to pay. We got our first WHOPPER bill the other day...over $10,000. Yikes! But we will keep working and trying to provide the best for Lia. Remember to visit Lia's websites, and if you can, donate to her fund. It goes to cover the portion of medical bills not covered by insurance, and for traveling 114 miles every week to Arnold Palmer Hospital for the chemo treatments. http://liawarrensfordfund.weebly.com OR http://liawarrensford.blogspot.com You can log into your Paypal account directly and send a donation to LiaWarrensford@hughes.net Or you can send "snail mail" donations to: 1565 Blackwelder Road De Leon Springs, FL 32130 Make check payable to Constance Perry MEMO LINE: Lia Warrensford Benefit Lia's Aunt Amanda also has a reminder: If you are able to see Lia, but are even STARTING to fell ANY sickness, please stay out of contact... Chemo. will attack her good and bad cells... literally busting away at her immune system and leaving it at nothing. With the addition of the heavy chemo schedule, her body will not have time to fully recover before the next round. If she gets any foreign germs (i.e. common cold) it could prove fatal. Please, help us, to help her.

SIDE EFFECTS & NEUROLOGIST

Lia is such a trooper, she is really being so good under the circumstances. She has not lost much of her appetite except for the few days right after chemo. We hope this lasts! But she is having sleep problems and the body pains are kicking in.

Yesterday Lia went to the neurologist for a check up. Her head circumference has enlarged again by 1/4 inch, so that is another concern for us. We are waiting to see how Dr. Guisti and Dr. Johnson - the Oncologist and Neurologist) want to coordinate for the next MRI series. Lia will continue traveling to Arnold Palmer Hospital every Wednesday for chemotherapy treatments for another 9 weeks, then there will be a 2 week break. It is likely the MRI's will be scheduled then, and the next course of chemo will begin after that.

I have been lax in the most recent THANK YOU's and for that I am sorry. We've been spending every moment sanitizing and making fliers, so I will try to get lists from all the people that are helping us and post the thank-you's on Lia's websites.

We want to thank the U-SAVE Car Rental family for their care and concern for our little Lia. They have been generous and kind, and we can't thank them enough!

To ALL the people that have come through with donated items for Baby Lia's online auction (Cometothefarm.com, under benefits, Coni Perry (Lia's grandmother) we also say THANK YOU! The bidders have been generous and bid frequently, for which we are so grateful. Here is the direct link to the auction pages:

http://www.cometothefarm.com/cgi-bin/auction.cgi?action=subcat&category=catr_main

We are also still accepting donations directly from this website and also from Lia's website at http://liawarrensfordfund.weebly.com

We have a 2 Poker Bike Run fundraiser scheduled, as well. I will post the details as soon as I have received them (over the next few days).

We also have an Olan Mills photogrpahy fundraiser scheduled, and I will post location and times with details over the next few days.

Lia's night after her first chemo treatment............

As you know, Lia's first chemo treatment was 5 August 2009. Lia arrived at Arnold Palmer hospital in Orlando and began her first course of treatment which began at 8 A.M. with her taking fluids to keep her from becoming dehydrated. After that Lia began the treatment with Vincrisitn and Carboplatin. After hours on that treatment, she took even more fluids. It was a long day and soon after Lia arrived home she began spitting up. Dr. Guisti warned us that it could happen, and poor Lia had a hard time keeping anything down for several hours. She was very fussy of course, and after she finally went to sleep she did well through the night. She seemed very chipper this morning, and ate her breakfast with no problems! She has not even spit up today! We hope the side effects will remain mild, but are watching for anything unusual.

BABY LIA STARTS CHEMO TREAMTMENT TODAY

We've spent the last 4 days sanitizing the whole house and steam cleaning all the carpets. Cassie, Ed, and I are sore and tired from moving furniture, scrubbing all walls and surfaces, and steam cleaning all the rugs.....those machines are heavy! It smells like a hospital in here now, but that will air out a little bit as time goes by. We have a regular cleaning schedule in place using the anti-germicidal solution, and will do a "deep sanitizing" with the "turbo-cleaner" we special ordered once a month to make sure Lia is not exposed to anything that would cause her to become sick during the chemo treatments.

Lia's immune system will be compromised due to the 2 chemo drugs- they attack both good and bad cells, so the danger of a fatal case of pneumonia is always present. She is on a preventative dose of antibiotics already.

Lia' first chemo treatment is underway as I type this update, and it looks like it will take about 7 hours this time. It's a very long day for them all, on top of 114 mile round trip. This will happen once a week. There are 2 chemo drugs - carboplatin and vincristine. So while one therapy will last about 10 weeks, then Lia gets about a 2 week break from that drug, the other drug will still follow it's own course, then break from that for about 2 weeks. So there will be about 14 months of treatments with the combination of drugs.

Keep Lia in your thoughts and prayers, please.