quote:

Originally posted by #1Tidefan:
TP or kupkake...I need one of you to shoot me a pm re: this thread. I can't get the donation to go through and I need info on Baba blitz's address so I can send it direct...

TIA...

quote:

Originally posted by Kupkake:
I've just posted the Tuscaloosa news article and our site information on Lucianne.com. They are a good group of people.

Pray for Brett and his family. And pray for our success in raising money for Brett's treatment.

quote:

Originally posted by Kupkake:
ALL RIGHT TIDESPORTERS - ONE OF OUR OWN NEEDS US - RIGHT NOW!!!

Brett Jackson, 9 yr old son of BamaBlitz and Tanda

Update 9/12/08, (9:59PM)
This update is at top of this thread because we need to act immediately!!

We talked to Brett's neuro-oncologist today. There may be other treatments that might help Brett, including one that is made at the University of Alabama. So there is a bit of hope! The Tuscaloosa News called us today. They are running Brett's story in tomorrow's paper (9-13-08). If it in on their website too I will link it here. We have also started a campaign to get people to call our governor and try to get him to override Medicaid's decision. We have had a many many people from many different states and countries call on Brett's behalf. We would like to ask you as well to email, call, or write our governor and tell him to override Medicaid's decision and let Brett have his treatment. Here is the governor's contact info:

Alabama Governor Bob Riley's Office
Mailing Address:

State Capitol
600 Dexter Avenue
Montgomery, Alabama 36130

Governor's Office Telephone Numbers: Switchboard: (334) 242-7100
Fax: (334) 353-0004
Email: Link

Thank you all so much!

Joe

Link to Tuscaloosa News article: Link

____________________________________________

Brett Jackson was born a brilliant child. Before Kindergarten he was reading and was able to add triple digit numbers together. He was always a straight A student.

In the beginning of May, 2008, Brett woke up in the middle of the night with a bad headache and began vomiting. Since that night he has developing more and more symptoms such as seizures, trouble with short-term memory, confusion, and eventually he became unable to walk or talk. He is unable to talk, has trouble focusing, and at times becomes paralyzed on one side of his body.

His doctors have labeled his condition as terminal. There is no known cure at for his condition, Neurocutaneous Melanosis with malignancy. Now there is a hope for a cure - but it will cost $100,00 and insurance will not pay for it

His family has been living in the hospital on and off for 3 months now. They are working on finding a place in Birmingham close to the hospital so they can eventually take Brett "home" but still be very close to his doctors at Children's Hospital. It would be nice to have a place for their family to be together again as well. Tanda and Joe have two younger sons Josh (5) and Matt (3).

Donation site: Link /howyoucanhelp.htm

CarePages site: Link

Pray for Brett and his family.

Update 9/4/08: $100,000. We talked to our social worker here at Children's who has been helping us all summer. She told us that Medicaid will not cover the cost of Brett's injections because it is an experimental drug. And the hospital in NY won't take him without coverage. We have no other insurance for the boys and we certainly do not have $100,000. The only viable solution is to try to fundraise to cover the costs of the injections. If 100,000 people could give $1 a piece, that would cover the cost of the drug that would help keep Brett around a little longer! That's a tall order. Who knows that many people?? I have never felt more pathetic than I do now asking complete strangers to look past the fact that they do not know me personally or do not know my family personally, but I have no other option but to ask for help. I would do anything for my children. Thank you so much! We love our son and don't want him to think that we didn't try everything we could to help him survive!!

Tanda & Joe

Update 9/7/08: Brett's been pretty stable lately with the exception of the occassional fever and twitching.

We've been plugging away at this fundraising and so far so good! We're truly grateful for everyone's help. We are on a mission to save our son and we thank you for riding that humongous wave with us.

A lot of people have been suggesting that we contact St. Jude's. We've actually already had our doctors contact them. There are no protocal treatments for Brett's disease at St. Jude that can't be done here at Children's Hospital, which is why we decided to stay. The trick is...the only treatment that has shown some promise in extending the lives of it's patients is the experimental study/clinical trial at New York's Sloan-Kettering Cancer Center. Because it is an experiment, it has to be done at their hospital.

Another question that a lot of people have had is why we would be charged for an experimental treatment. Clinical trials that are sponsored by the NIH are free because they are supported by taxpayers. However, this trial is sponsered by a grant from the NCI which means it's not free. I've taken an exerpt from cancer.gov to answer why our insurance won't cover the treatment in NY and why we are raising money:
"Health insurance and managed care providers often do not cover the patient care costs associated with a clinical trial. What they cover varies by health plan and by study. Some health plans do not cover clinical trials if they consider the approach being studied “experimental” or “investigational.” However, if enough data show that the approach is safe and effective, a health plan may consider the approach “established” and cover some or all of the costs. Participants may have difficulty obtaining coverage for costs associated with prevention and screening clinical trials; health plans are currently less likely to have review processes in place for these studies. It may, therefore, be more difficult to get coverage for the costs associated with them."

We have tried to contact our state's Governor to "appeal" Medicaid's policy about not covering experimental treatments. We're just waiting for a response. We've also contacted radio stations, news stations, and newspapers to try to get more help.

If you have any questions about any aspect of this situation, please feel free to email me: tanda123 at yahoo.com

Take care!
Tanda, Joe, Brett, Josh, and Matt.

Update 9/9/08: This afternoon Brett had a seizure that lasted over 40 minutes. He was given several drugs to stop it. Because of the medication, the low muscle tone in his chest, and exhaustion from his seizures, Brett had a difficult time breathing on his own and was taken to ICU to be intubated. A CT scan indicated that Brett has a tumor growing by his ventricles and that it was putting pressure on the left venticle cutting down blood flow. The neurosurgeons have told us this evening that it would be more dangerous to remove the tumor than to let it be because it would cause hemmorage in his brain. There's nothing we can do to stop it. They are expecting to remove the breathing tube this evening and hope that he can be alert enough to breath on his own. Tomorrow we'll see if we can get any response from him. Thank you for keeping up with Brett. Your thoughts and caring words mean the world to us. I'll try to update sooner tomorrow. Tanda

Update 9/12/08 Friday Update

We saw Brett this morning and he decided to finally wake up. But, after realizing that he had a tube down his throat and his hands were secured by bands (to keep him from pulling the tube out), he went into a panic mode and ended up having a seizure. He was sedated again to calm him down and let him rest. That means he'll have to stay intubated again today.
We got the results of his MRI today as well. The disease is gradually getting worse. Brett's oncologist has been trying to ask the hospital in New York if they could just send the antibody down for "compassionate use". We're still working on that plan. If we can get the name of the drug manufacturer, we could try to get them to send it here and Brett will not have to travel at all, which would be best considering his current state.
A misunderstanding from doctor to doctor: there is not a tumor/mass in Brett brain. It is swelling. And the swelling has been aggrivating his situation causing him to have more seizures. They are going to try to treat the swelling with steroids. Only time will tell if that will help.
Also, he has bacteria in his blood and is being treated with antibiotics.
It's just one thing after another, you know?
Thanks for reading and keeping up with Brett's situation. We truly appreciate the support and kind words. This is the most difficult thing we've ever had to go through.
Take care and hug your kiddos!!
Tanda

quote:

Originally posted by brd318:
All I can give is a few dollars. At first, I thought that my contribution wouldnt help much, so I slept on it. I discovered that I couldnt sleep very good if I didnt try to give this youngster a fair chance in life. He's family! Lets get him the help he needs.

quote:

Originally posted by msdebs7:
Hi Everyone. This is Brett's Grandmother and Joe's Mother-In-Law. Brett had some seizures this morning and is now being transferred to a Special Care Unit; something similar to ICU. Please pray for him and continue to help any way you can. We are so desperate to get him help! Joe isn't in here much right now because so much is going on with Brett's health and various health issues that keep happening to Brett on an almost daily basis. Funds are coming in but there hasn't been time to update the total because Joe & Tanda have been quite busy dealing with medical decisions with Brett and taking care of their other 2 boys. You guys have been a God send and I am so thanksful to all of you!
You know, I hate this aweful nightmare we are in and keep hoping Brett will smile or talk again. Somewhere, someone has the answer to help Brett and I wish I could find them! I want my grandbaby back so he could eat the chocolates he so loves and smile as he watches a ball game. Please keep helping anyway you can. I ama desperate Grandmother to help my grandbaby!
Thanks.