Sunday, October 5, 2008

Haute Couture For a Cause - Aleigha

A couple of weeks ago I joined a group called Littlest Heroes Project. This is the description of the group taken from their website:

The Littlest Heroes Project is a non-profit based organization founded in January 2008, made up of professional photographers nationwide that provide free photo sessions to our nations Littlest Heroes. This is our way of giving back and taking a stand for these children who sometimes feel forgotten because of their illnesses. We are here to let them know that they are heroes to many, and to share their inspirational stories and photos with the world.

From one of the photographers there, I "met" the parents of this beautiful girl called Aleigha. And this is her story:

7/23/02 is when our journey with Aleigha began.. She was born at Parkview Whitley 4 weeks early. She had an abnormal heart beat and she did not pass the hearing test. As soon as the heart dr could get us in we were there the same with the ENT.. The heart dr did a dopler on her heart and the PDA had closed on its own (god answered our prayers) the ENT went in and removed some wax covering her ear drum and she could hear(another answered prayer) at 8 months old (3/03) Aleigha contracted Invasive Group A Strep.. and was life~line to Saint Vincents Childrens Hospital in Indianapolis after dancing in the light for 4.5 weeks god answered yet another prayer Aleigha came back and was a normal child, she only had 5% chance of making it BUT she DID..

After all that Aleigha was a normal little girl, except for knowing she was a princess.. After almost losing her our entire family and friends ALWAYS treated her as though she really was one.

On Aug. 11 she told her dad and I that she needed to see her lung dr. her chest hurt, so we called him, we also called his wife who is her ped. they right away sent us to Parkview to make sure she didnt have phemomia.. she had been coughing but a child with asthma coughs alot and that is what we all thought it was the week before. Tom took her right up to Parkview where our lives changed forever! The CT scan showed it wasnt what the Drs had thought at all it was worse, much worse, it was a mass about the size of a baseball sitting on her lung. Once again her wonderful drs had to send her out to get the proper treatment.. the Lutheran Childens Critical Care Unit came to Parkview and took Aleigha down to Riley Childrens Hospital.. where we waited 24 hrs for another CT scan. The scan showed the tumor had grown and now took up 2/3 of the chest compressing every organ down and to the left. The bioposy showed it was Rabdomyoscarmo.. we agreed to have it sent off to make sure, it was nothing more, Later that same night 8/15/06 Aleigha was sent to ICU to be intabated, it seems that her 2 treatments of radiation, and hr 1 dose of chemo shurnk the tumor enough to let it slip and go over her tracha. Aleigha had already told Dr. Pradhan "I am a supergirl princess with the power of pink so I dont need your stupid medications." so our power besides prayer became PINK!

On 8/18/06 we were informed that her tumor was actually PleuroPulmonary Blastoma ( a rare childhood lung cancer) we were shocked our next plan of action help find a cure and to cure Aleigha. Aleigha was put on 11 different medication to keep her asleep and she fought them off, her nurses never left for the day NOT tired, after several rounds of chemo Aleigha was allowed to wake up.. the first thing she wanted was a potty chair, (9/28/06)

We were able to do surgery to remove 98-99% of her tumor, she has so far had 31 rounds of radiation and 6 courses of chemo. and still we know she will make it with the positive prayers ( we do know god hears them shes proof) and her POWER of PINK.

Please take time to read our journals life aint always beautiful but its a beautiful ride!! and sign her guestbook she love its!

PET SCAN-8/9/07 100% cancer free still!!! Spots improving on spine.. Spot on lung no change!! Praise God!

PET SCAN-5/1/07 100% CLEAR!! PRAISE God and Pink Power

In November 07 Aleigha relapsed. Her Drs. told us that this time the cancer would take her. That hit us hard, but Aleigha she looked at her Dr. and told him he didnt know what he was talking about, and preceded to tell him she would beat it this time too. Aleigha was put on an experimental clinical trial in Nov. 07. She goes to Riley ever 21 days for one day to start each round of chemo. She has 3 chemo meds to take. The first one is only on the first day. She gets that thru her PIC line and then the other are for 5 days and they are oral chemos. Day one is at Riley and days 2 thru 5 are at home. She cant stand the taste of them but takes them anyway. Then once a week we go to Lutheran Hospital here in Fort Wayne for lab work and check ups.It was very hard to hear that the cancer would eventually take her. We had long talks and decided to live with no regrets. That is to do what ever Aleigha wants to do. That way we never have the regrets of not doing something. We also let everyone know that Aleigha was in charge and we will fight this with her as long as she is able. The scans started to show small shrinkage in each of the three hot spots. Then in June the scans stayed the same no changes. That was good that they stopped growing and are now stable. In August 08 we went to teh PPB family get together and conference in Bloomington Minnesota and met other PPB families and the top Drs. in the study and treatment of PPB. Aleigha is patient 203 in the world and now there are only 254 cases in the world. We learned both good and bad news, and made connections with the other families and we keep in touch with them. The bad news that we leaarned was that no one with stage 3 PPB has survived after relapsing. We learned that our Drs. are doing an awesome job, and we believe Aleigha will survive this and pave the way for others to beat it too. The trial we are on ends in November 08. We will discuss with her Drs. what the next best coarse will be and continue on that path.Aleigha has been just amazing through all of this and has maintained a positive strong attitude that she will win. Aleigha is our Hero and has many followers on her web-site that encourage her and the rest of the family to fight on. Thanks go out to God, Aleighas Power of Pink, and all thoughs who pray for her.

Daddy of the Pink Princess

So, since this is getting closer to Christmas, I thought it would be nice to play secret Santa and send Aleigha a little care package letting her know that she is not forgotten and that we all love her.

So designers who are interested in sending her a little gift, please contact one of our mods Cassandra. She lives in the same town as her, and she said she will deliver the package to her directly. You will send your items to Cassandra, and she'll collect them and wrap them in a gift box. The item MUST be arrived in Cassandra's house no more than November 30th. When she deliver the package, I will ask her to take pictures of Aleigha opening the package and maybe wearing the gifts, which I'm sure she won't mind, Cassandra is a sweetheart. That way designers will know that their gifts made it safely to Aleigha. I will then post the pics here in the blog.

Here's her info of what she likes and her measurements:

Head 21.5

Wrist 5.5

Pants 5 slim

shirts 5-6

Shoes size 11

She has no known allergies to materials and she just turned 6 in July 07

Aleigha loves Pink, fancy ,frilly, or just play clothes. She loves shoes, she has a lot of them. Her interest are learning, ninetendo WII and DS. She loves to play dress up with her sisters. She loves Bratz and Barbie movies.

So make me proud y'all! :) And for those who can't send her gifts, please just keep her in your prayers and thoughts so that she can get well soon.

I'd like to eventually do this every month, with different children. But for now let's do one thing at a time. God bless all of you :).

Aleigha

Me having a conversation with GOD.




2 comments:

klpdoyle said...

Hello! I was blessed to have met Aleigha at the PPB conference her parents described in Minnesota this past August. My youngest son suffered from the very same cancer and has been 5 years post chemo now.
I wish I could put into words how very special this little girl is... Aleigha has a inner light that shines brighter than any star! She embraces life and shows us all what living truly is...
Kris Doyle

Cuddles Kids said...

Hello, I am at a loss of words as I read and reflect on the amazing courage this little girl has. She has been fighting her whole life to just live. Aleigha is a source of inspiration for us all. I will keep her in my daily prayers and ask friends and family to pray for her successful recovery. God places angels amongst us and she is definitely an angel. I own a childrens boutique: www.cuddleskidsbedding.com. I would like to send her something for Christmas but want to make sure she does not have any allergies to certain fabrics or materials and her exact age. Please provide additional information to my email: cheryl@cuddleskidsbedding.com