LIA WARRENSFORD FUND

BACK TO UPDATES!

2010-08-11T17:29:00.000-07:00

Hello again! I've fallen terribly behind on updating Lia's blog, and I apologize for that. SO many things have been happening, and it seems on obstable after another has surfaced.

We have decided to sell our home & property, as well as my truck. I have already sold off all the livestock and no longer have need of the truck - what we DO need in the $1,200 for Lia's aunt for her college books. Thankfully, Auntie Lacie has earned multiple scholarships and took two Stafford loans - plus her Dad and I have also taken a Stafford loan to complete her $49,000 tuition to Ursinus College. We still have to get school clothes and supplies and school startes on the 16th! **SIGH**

So, if you are interested in a spacious home on 5 acres in DeLeon Springs, Volusia County, Florida you should go to this website and look at the Virtual Tour: http://www.homesb yowner.com/

The truck photos can be seen HERE. It's a 2003 Ford F-250 Super Duty Turbo Diesel, Crew Cab, Centenniel Limted Edition.

Anyway, Lia has had a few sets backs since the last posting. She's had side effects from the chemo drugs - like terribly painful mouth and throat sores that come with high tempertures and dehydration from not being able to eat and drink. A few weeks ago, poor Lia was admitted to Arnold Palmer Hospital with a temp over 101 for three days. The doctors were testing for the cause of the temperture, including H1N1. As it turned out, the sores had developed down in her throat and couldn't be seen until they spread upward into Lia's mouth! That was causing infection. Her ANC numbers were very low - enough that the docotr suggested a blood tranfusion! Fortunately, a week's rest from chemo rasied her ANC enough that it was not necessary yet.

1565 Blackwelder Rd

2010-08-09T13:55:00.000-07:00

1565 Blackwelder Rd: "Home For Sale at HomesByOwner.com"

December 3, 2009

2009-12-02T23:08:00.000-08:00

Here is our Baby Lia during her chemotherapy session. It is painful to see her like this. Lia's ANC level was up high enough to take one of the two chemo drugs today. She usually take both Vincristine and Carboplatin. She's lost almost all of her hair now. The stress levels are so high, she and the kids are picking up on it too. We are in serious financial staits, and time is running out for us to find a way to afford our house.

2009-11-28T07:08:00.000-08:00

HAPPY THANKSGIVING!

Hello everyone. Sorry I am behind on updates. Things have been very stressful lately. It's easy for people to forget the rest of the family and their needs when there is a cancer patient in the home, but believe me, the rest of the family still has problems and needs. It's been an experience and we are still adjusting to the financial and emotional stress.

Well, Lia's chemo treatment had to be canceled last Wednesday. Her ANC blood value was 300 points too low for her body to accept the chemo drugs. So we will just have to go back this Wednesday and wait to see if her blood work has improved. Poor little girl, always getting poked and prodded. But she is so sweet and upbeat.

Here's a picture I call "Baby Lia: Queen of the Sweet Potatoes" She was the reigning queen of the Thanksgiving dinner, that's for sure.

We want to thank Parker's Pal for sending Lia a gift card, and also Mr. Hill of the Volusia County Cancer Foundation for the generous gift certificate to get Lia clothing. She had all but outgrown most of her things, and we were so grateful to get her new, warm clothes!

CHARITY POKER TOURNAMENT FOR BABY LIA.

Monday evening, November 30th, 2009, 7 P.M. t0 11 P.M. Stetson University, in the Stetson Room at the CUB. Come to the Stetson Room at 7pm Nov. 30th to play in our charity poker tournament! The buy-in is $5 and all the funds will be going to the Lia Warrensford cancer fund!

Come to the Stetson Room at 7pm Nov. 30th to play in our charity poker tournament! The buy-in is $5 and all the funds will be going into the Lia Warrensford cancer fund!

PRIZES FOR THE FINAL TABLE!!!!!!

Lia is the 1 year old niece of Emily Hall RA Jessie Perry. This summer, Lia was diagnosed with inoperable brain cancer, and we want to help Lia's family pay for her treatment and care!

LIA BEGINS SECOND COURSE OF CHEMOTHERAPY

2009-11-06T06:06:00.000-08:00

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!

There will be a BOWL-O-RAMA fundraiser at the Sunshine Bowling Lanes in Deland, FL on Saturday, 21 November 2009 from 3 P.M. to 5 P.M. We will be posting all the details and a flier for the event within the next week. Lori Clay deserves a round of thanks for making the calls to get the ball rolling for this new fundraiser. Another thank you goes out to the staff and management of Sunshine Bowling Lanes for their help and support.

DOWNLOAD FLIERS from Lia's website:

http://liawarrensfordfund.weebly.com/

Connie LaRosa Nance, the organizer of Baby Lia's first bowl-a-thon event, has graciously organized a yard / rummage sale on November 21 & 22, 2009 to benefit Baby Lia's cancer fund. Times, exact locations, and details will be posted very soon! Check back for details and fliers.

DONATION OF ITEMS FOR THE SALE GRATEFULLY ACCEPTED!

Contact: Connie Nance

Phone: 407-792-9505

Email: cbug914@gmail.com

SPECIAL THANKS

2009-10-26T10:19:00.000-07:00

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

2009-10-24T03:36:00.000-07:00

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!

2009-10-22T10:29:00.000-07:00

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!

2009-10-07T15:32:00.000-07:00

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....

2009-10-01T06:29:00.000-07:00

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

2009-09-24T07:10:00.000-07:00

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!

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

2009-09-20T07:12:00.000-07:00

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.

COUPLE STEALING BABY LIA'S DONATIONS!

2009-09-10T05:47:00.000-07:00

We just found out that a younger couple in the Orange City are has been STEALING the money out of Baby Lia's donation jar at both Dale's Ales and the Oyster Bar!

This disgusting, thieving, pair of low-lives hit the donation cans 2-3 times already, in less than a week and a half.

HOW does anyone justify STEALING from a sick baby?

SO MANY people have been so kind to help Baby Lia and to have them slapped in the face by this pair of troglodytes is just maddening! Good people donated hard earned money for BABY LIA, not for this pair to go drinking or buy more drugs! And from the description of these bums, I have NO DOUBT about their character.

SO, I am going to vet my frustrations here, and I certainly hope you will all forgive me!

To the people that are bereft of all honor, ethics, and dignity:

Any similarity between you and a human is purely coincidental.

As an outsider, what do you think of the human race?

Brains aren't everything, and in your case they are nothing.

Your origins are so low, you'd have to limbo under your family tree.

You have about as much class as a lawn flamingo.

If your conscience could be surgically removed, it would be a minor operation.

You must come from the shallow end of the gene pool.

OK! I am feeling slightly better now......thanks for letting me vent!

BOWL-A-THON FUNDRASIER!

2009-09-09T13:31:00.000-07:00

Sunday October 25, 2009

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, FL 32773-5404

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

THANKS TO AIRPORT LANES!

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

GOOD NEWS, BAD NEWS, & NEW FUNDRASIER

2009-09-09T10:28:00.000-07:00

Good news is that Lia's ANC level went back up to 1444! YIPPEEEE! This is the level that the doctor uses to determine Lia's ability to fight off infection. The higher the better!

Lia can re-start the Carboplatin drug therapy in addition to the Vincristine drug therapy next week IF the ANC level stays at 1000 for above!

Bad news is that the hemoglobin count dropped down to 8.6 and the platelet count dropped a lot to 272,000. If the hemoglobin drops to below 8, Lia will have to begin blood transfusions. If the platelet count drops to 80,000 or below we will see a lot more bruising on the baby and if it drops to 20,000 or below Lia will have to have a platelet transfusion.

Values for Children on Chemotherapy
Blood counts of children being treated for cancer fluctuate wildly. White blood cell counts can go down to zero or be above normal. Red cell counts decrease periodically during treatment, necessitating transfusions of packed red cells. Platelet levels also can decrease, requiring platelet transfusions. Absolute neutrophil counts (ANC) are closely watched as they give the physician an idea of the child's ability to fight infection. ANCs vary from zero to in the thousands.

Oncologists consider all of the blood values to get the total picture of the child's reaction to illness, chemotherapy, radiation, or infection. Trends are more important than any single value. For instance, if the values were 5.0, 4.7, 4.9, then the second result (4.7) was insignificant. If, on the other hand, the values were 5.0, 4.7, and 4.0, then the trend would indicate a decrease in the cell line.

Hemoglobin (Hgb) Red cells contain hemoglobin, the molecules that carry oxygen and carbon dioxide in the blood. Measuring hemoglobin gives an exact picture of the ability of the blood to carry oxygen. Children may have low hemoglobin levels at diagnosis and during the intensive parts of treatment. This is because both cancer and chemotherapy decrease the bone marrow's ability to produce new red cells. Signs and symptoms of anemia — pallor, shortness of breath, fatigue — may appear if the hemoglobin gets very low.

Platelet Count Platelets are necessary to repair the body, and stop bleeding through the formation of clots. Because platelets are produced by the bone marrow, platelet counts decrease when a child is on chemotherapy. Signs of lowering platelet counts are small vessel bleeding such as bruises, gum bleeding, or nose bleeding. Platelet transfusions may be given when the count is very low or when there is bleeding. Platelets are counted by passing a blood sample through an electronic device.

Approximately one third of all platelets spend a great deal of time in the spleen. Any splenic dysfunction such as enlargement may cause the counts to drop precipitously. If the spleen is removed, platelet counts may skyrocket. This transient thrombocytosis (elevated platelet count) usually goes away within a month.

NEW FUNDRAISER!

Lia Warrensford Foundation Bowl a Thon:

Host: Connie Nance
Type: Causes - Fundraiser
Network: Global
Price: $20 per person or $40 for family
Date: Sunday, October 25, 2009
Time: 1:00pm - 3:00pm
Location: Airport Lanes
Street: Airport Boulevard
City/Town: Sanford, FL
Phone: 4077929505
Email: cbug914@gmail.com

AIRPORT LANES
190 East Airport Blvd
Sanford, FL 32773
407-324-2129

LINK: See Facebook Cause : Lia Warrensford Foundation Bowl a Thon

http://www.facebook.com/photo_search.php?oid=130726832374&view=all#/event.php?eid=130726832374

Thank you, Connie Nance, for your kindness, dedication, and heart of gold for helping us raise funds to support Baby Lia's expenses during this stressful time!

Lia's 5th Chemo Visit

2009-09-04T08:05:00.000-07:00

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:

ANC = the percentage of neutrophils (segs and bands added together, these are the neutrophils that fight infection) multiplied by the total WBC

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 Arnold Palmer Hospital 2-3 times per week instead of just once per week.

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'S LATEST CHEMO UPDATE

2009-08-31T12:30:00.000-07:00

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

2009-08-19T09:59:00.000-07:00

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

2009-08-16T07:36:00.000-07:00

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

2009-08-14T08:32:00.000-07:00

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!!!

2009-08-13T09:30:00.000-07:00

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

2009-08-12T06:18:00.000-07:00

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

2009-08-11T06:52:00.000-07:00

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............

2009-08-06T11:27:00.000-07:00

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

2009-08-05T06:13:00.000-07:00

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.

NEW GRAPHICS & FLYERS

2009-07-30T03:58:00.000-07:00

Good Morning.

Lia has a short break until she begins the chemo treatment next week, so we are sanitizing the house, preparing to move Lia's Aunt Jessie into her dorm at Stetson University, and re-arrange the house for Lia's comfort. Lia's Uncle Cody has an exploratory surgery scheduled for the day before Lia's chemo, and Aunt Jess has to be moved into her dorm on the same day! Things are always so busy around here.

In spite of all that is going on, I did get to work on some new graphics for Lia's benefit. These can be used on fliers, t-shirts, website, etc. I will upload the new fliers too. Keeping things fresh might help to keep people interested in Lia's cause. Not to mention it is kind of therapeutic for me!

If you'd like to use any of these graphics, you can copy them from here, or you can e-mail me at LiaWarrensford@hughes.net and I will send them as an attachment.

I have also made three new flyers using the new graphics above, and another fyer that is in a layout to allow it to be wrapped around a donation can. Here are links to those:

Flyer # 3 - Click Here

Flyer # 4 - Click Here

Flyer # 5 - Click Here

Donation Can Flyer # 1 - Click Here

NOTE: These are Word files, and they should auto-open in the Word program, so it may take a few minutes to download. Please be patient.

2009-07-28T16:00:00.000-07:00

This is a design I am working on for buttons.

I found a supplier that makes just about any size and does not charge a set-up fee! Yippeee!

Lia is going to the eye specialist today....

2009-07-28T08:44:00.000-07:00

Today Lia will be visiting a pediatric opthamologist to get more information on what condition her eyes are in now, and what can be expected later. That will also depend greatly on the effects of the chemotherapy. The smaller the tumor is, the less strain on the optic nerves. We hope for good news of course! We will post what the doctor has to say later today.

We want to thank the extremely kind and generous members of all the goat breeder's associations and clubs who have come forward with donations to help defray the expenses of Lia's treatment and travel. You are truly wonderful people, many of the same names I have seen donating to other funds and benefits throughout the years. Your kindness will not be forgotten, and you are a shining example to others. Our deepest gratitude goes out to all for your prayers and well wishes!

It is important to us to thank the following folks as many times as possible!

Thomas Burke & Becky Ehoff and Terri Burke (Backlash LaManchas & Cen*Cal Toggenburgs)
Kelley Hines (Here Be Goats LaManchas)
Linda Shuls (Timber*Cove LaManchas)
April & Mike Hitch (Shady Lawn Farm)
Richard Grossman (Antiquity Alpines)
Khimaira Web Hosting (Khimaira)
MaryJo (WebNanny Designs)
Luanne Scott
Anna M. Varone
Bobbie Potopowitz (Alpenglow Dairy Goats)

2009-07-27T15:23:00.000-07:00

Hello everyone;

We just spent the entire day at Arnold Palmer Hospital meeting with Dr. Vincent Guisti, the oncologist, and some of his team from the Children's Oncology Group. Lia also had more blood work done which was a LITTLE easier because they can draw it through the chemo port implanted in her side. The chemo drugs (Carboplatin & Vincristine) will be infused through the chemo port. Lia's chemo course will last a little over 1 year this time. She will take larger doses for the first course, then have a break of about 2 weeks, and then start the next course. The side effects are considerable. Low blood counts, nausea/vomiting, abnormal liver function, diarrhea, metallic taste, kidney damage, hair loss, allergic reations, rashes, hearing loss, numbness in fingers & toes, constipation, stomach pain, muscle weakness, irritation of nerves, drooping eyelids, bluured or double vision, jaw pain, seizures, to name a few. Not all of these side effects happen to every child, and we certainly hope Lia has only a few.

2009-07-26T08:13:00.000-07:00

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

2009-07-20T15:15:00.001-07:00

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:

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.

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