Good morning, friends & family.

Well, we've been in a holding pattern so to speak for about a week now waiting for Lia's appointment with the oncologist at Arnold Palmer Hospital in Orlando. I have to say, that is one excellent facility. The staff is amazing, and they were wonderful to us while Lia was there. Lia goes back to see her doctor tomorrow, and we will know more about the type of chemo drugs that will be used, time frame, side effects, and results hoped for.

Lia is having some sleep issues from time to time but nothing we didn't expect as a result of the type of tumor and placement. She gets sore and cranky from the port in her side...it's placement makes in nearly impossible not to bump or touch it when we hold her in daily activities.

Lia had an appointment with an eye specialist later in the week as well, but we got a call from the office saying they take our type of insurance, but not our particular group plan. Nice. So now we have located another specialist, but have to go through getting a new referral before we can get an appointment. That is scary because Lia's chances of blindness from this tumor increase the longer it takes to start chemo to shrink the tumor.

On top of that, we've been told that for each and every treatment, we'll have to go to the Florida Health Care (our insurance carrier) office and get a new referral. It can't be mailed or faxed. So chemo appointments will need to be scheduled to allow time to go pick THAT up every time.

The icing on the cake was finding out that there is a possibility that Florida Health Care doesn't cover the chemo drugs. So we have NO idea what that is going to cost out of pocket. We are waiting for Florida Health Care to call us back with more details about that issue.

We'll apparently have to have a special chemical cleaning in the house to make sure Lia doesn't get any germs during her treatment. No word as to whether or not that is covered, or if they will suggest we do any renovations to bathroom facilities or if they detect any mold from hurricanes and tropical storms that might effect Lia, or anything like that.

We have 11 people here in the house- and Papaw Norman is working pretty hard to keep us all under one roof and fed right now. He's in stage 4 kidney failure himself, so we've got 9 doctors between everyone now. It's become a challenge to keep all the doctors and appointments straight.

That said, we have to thank some people that have REALLY stepped up to help us in a bad time.


First, Carlton & Lindsey Dobbins. This couple took it upon themselves to go through their home and provide clothes and all kinds of baby food for Lia to help us. On top of that, the have organized a bake sale fundraiser - a really nice catalog of baked items. We are going to try to get more copies of that to pass out. THEN they went to the store and stocked up on every possible thing Lindsey could think of that Lia might need to keep her comfortable and occupied. They are currently working on two other larger fundraising projects! When these fundraisers come together I will post them on Lia's blog and website along with all the details and directions. Carlton, Lindsey and their beautiful children have been GREAT, and we can't thank them enough for standing by our family. Old friends are the best friends!

To the Warrensford Family - Bill, Soo, Amanda & Penny: As family, we Perry's thank you for all you have done for Cassie, Ed, Zoe, & Lia over the last few years. We know from experience that it isn't easy! You've been wonderful to us, and terrific to Zoe & Lia. If anyone has to go through something like this, it is a blessing to have family like you to stand side by side with. Our families will get through this trying time together. There are many other Warrensfords to thank for their well wishes and prayers...and we do. From our hearts - Thank You.

A huge THANK YOU to Jim, Linda, Jennifer Davis of JLD Farm (LaMancha Dairy Goats). Even though times are hard- especially on farmers, they have gone above and beyond to donate to Lia's Cancer Fund. You three are terrific and we love you very much! THANK YOU! Anyone looking for excellent quality milking goats in the Osteen / New Smyrna, Florida area should contact Linda & Jim at winandeffie@embarqmail.com

Luanne Scott, we thank you so much for your extremely generous contribution to Lia's fund. I have never been so amazed (but not surprised- goat breeders are incredibly caring people!) as when the first people to donate to help Lia turned out to be members of the goat breeders community. Our heartfelt and sincere thanks.

MaryJo, or WebNanny Designs: You are so deeply appreciated for your kind heart and fast response. There must have been smoke coming off your keyboard! Your kind heart and concern for Lia and our family will never be forgotten. I must recommend MaryJo's fine service to anyone needing a quality website design - and I am not too proud to plug her skills here in this forum! Visit WebNanny Designs here: http://webnanny.net/WEBNANNY/hosting/. Remember - if MaryJo gets too busy, you can call on me for web designs! HA HA! Thanks again!

Regions Bank, especially Eric....THANK YOU for helping us get an account set up for Lia's fund. You made getting the account set up fast and easy, AND you have a great sense of humor and a kind heart. We wish you, your wife, and daughter all the very best!


Check back tomorrow afternoon for an update of the oncologists appointment. Have a wonderful Sunday afternoon, spend time with your wives and husbands, and hug those little ones tight.

- Coni Perry

LIA WARRENSFORD FUND

Lia Warrensford is a beautiful 9 month old baby girl who was just diagnosed with Optic Pathway Glioma. This tumor is inoperable.

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

We do not yet know what the side effects will be for Baby Lia.

This form of tumor will not go away as a result of chemo treatment. It is something Lia will battle for the duration of her life.

The tumor will begin to grow again, and Lia will have to endure chemotherapy approximately every 18 months to 2 years.

The medical expenses are already mounting, and you can help Lia and her family by making a donation to help defray the costs of treatment and travel.

Please help Baby Lia through this traumatic experience.

Download Lia's Flyer #1 Here

Download Lia's Flyer #2 Here

You can help by passing out flyers, or puttign them up in local businesses.

ONLINE DONATIONS:

Online donatations can be made using your bank account, debit card, or credit card at Paypal.com - a completely secure website.
Make the donations to LiaWarrensford@hughes.net
OR
take this direct link:

MAIL DONATAIONS:

Make check or money orders out to:

Constance Perry, Benefit of Lia Warrensford

OR

Constance Perry

and in the memo line add Benefit of Lia Warrensford

and mail to:

1565 Blackwelder Road, De Leon Springs, FL 32130

Some of Lia's family visit her at Arnold Palmer Hospital for Women & Children in Orlando, Florida. You can see Lia's wound from having the chemotherapy port implanted in the largest photo in the collage above.


CONTACT US HERE

WHAT IS OPTIC PATHWAY GLIOMA?

Alternative Names

Glioma - optic; Optic nerve glioma

Definition of Optic glioma:

Gliomas are tumors that grow in various parts of the brain. Optic gliomas can affect:

• One or both of the optic nerves, which carry visual information to the brain from each eye
• The optic chiasm, the area where the optic nerves cross each other in front of the hypothalamus of the brain

An optic glioma may also grow along with a hypothalamic glioma.

Causes, incidence, and risk factors:

Optic gliomas are rare. The cause of optic gliomas is unknown. Most optic gliomas are slow-growing and non-cancerous (benign) and occur in children, almost always before age 20.

There is a strong association between optic glioma and neurofibromatosis Type 1 (NF1).

Symptoms:

The symptoms are due to the tumor growing and pressing on the optic nerve and nearby structures. Symptoms may include:

• Involuntary eyeball movement
• One or both eyes may bulge outward
• Squinting
• Vision loss in one or both eyes
• Leads to eventual blindness
• May be a loss of peripheral vision or vision loss may be more general

The patient may show symptoms of Diencephalic syndrome, which includes delayed growth, loss of appetite and body fat, daytime sleeping and decreased memory and intellectual function.

Signs and tests:

A neurologic examination reveals a loss of vision in one or both eyes. There may be changes in the optic nerve, including swelling or scarring of the nerve, or paleness and atrophy of the optic disk.

The tumor may extend into deeper locations of the brain. There may be signs of increased pressure within the brain (intracranial pressure). There may be signs of neurofibromatosis type 1 (NF1).

The following tests may be performed:

• Cerebral angiography -- often not necessary, but if used, it shows a space-occupying mass
• Head CT scan or MRI of the head -- confirms the diagnosis and the exact location of the tumor
• Tissue removed from the tumor during surgery or CT scan-guided biopsy -- examined to confirm the exact type of tumor.
• Visual field tests -- can help determine how invasive the tumor is

Treatment:

Treatment varies with the size of the tumor and the general health of the person. The goal may be to cure the disorder, relieve symptoms, or improve vision and comfort.

Surgical removal may cure some optic gliomas. Partial removal to reduce the bulk of the tumor is feasible in many cases, which will minimize pressure-induced damage from the tumor.

Radiation therapy may be advised in some cases where the tumor is extensive and surgery is not possible. In some cases, radiation therapy may be delayed because of the slow growth that this tumor typically displays.

Corticosteroids may be prescribed to reduce swelling and inflammation during radiation therapy, or if symptoms return.

Chemotherapy could be useful in a number of children. Chemotherapy might be especially useful when the tumor extends into the hypothalamus.

Support Groups:

For organizations that provide support and additional information, see blindness resources.

Expectations (prognosis):

The outlook is highly variable. Early treatment improves the chance of a good outcome. Many tumors are curable with surgery, while others return.

Normally, the growth of the tumor is very slow, and the condition remains stable for long periods of time. However, in adults and some childhood cases where the optic chiasm is involved, the tumor behaves aggressively.

Complications:

• Decreased vision
• Blindness

Calling your health care provider:

Call your health care provider if you have any vision loss, painless bulging of your eye forwards, or other symptoms of this condition.

Prevention:

Genetic counseling may be advised for people with neurofibromatosis-1. Regular eye exams may allow early diagnosis of these tumors before they cause symptoms.

CONTACT US HERE

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