Posted Jan 1, 2009

Watch the Jackson's Christmas slide show!
Christmas 2008

Posted December 30

Hey guys!
We had a really nice Christmas. Josh and Matt had a blast! They were so excited about the toys that they got (most of all the scooters!). They are so happy.
Brett has been doing well. He has maintained a status quo, which is okay. We tried to help him open his presents and hope that he likes what he got. He was really sleepy until the afternoon so he was asleep when the two younger boys got up for Christmas. But we did what we could to make is nice for him.
We took lots of pictures and some video. As soon as I can get it together I will create an online album for everyone to see.
We owe a huge THANK YOU to everyone who donated items to help the boys (and us) have a really great Christmas. Your kindness has touched our hearts. And everyone should know that the nurses at Children's Hospital in Birmingham in the "4 Southeast" wing are among the most incredible women in the world. We love you guys so much!
We hope that you all had a really nice holiday! Thank you for keeping us in your thoughts!

Posted December 22 by Joe Jackson:

Just a quick update. Brett is doing good; he is stable. Not much has changed with him since the last update. He watches TV and seems to be pretty alert.
His grandfather (whom he calls "paw-paw") bought Brett a very nice recliner for Christmas. So now Brett can sit in it and watch TV in a very comfortable recliner. Brett seems to like it.
Tomorrow Brett goes to the hospital for his bi-monthly infusion of chemo. It will be his last infusion of this year.
We are looking forward to celebrating Christmas with all three of our boys (Brett even got to help put decorations on the Christmas tree!). It is not how we want this Christmas to be. A year ago we had no idea what this year had in store for our family. But, considering how things could have turned out, we are very grateful to have Brett here to celebrate with us. Thank God we have this Christmas with Brett!
Please keep praying for Brett. Thank you.
Joe Jackson

Posted December 13 by Kupkake:

I'm using this thread to thank Zuter for his efforts past and future. He has sold all 40 smoked butts in his quest to donate money to Brett and his family! A special thanks to him!!! His work shows that one person can make a difference. Thanks Zuter!!!

Posted Dec 13,2008 (by Joe)

Prayer Request

I want to thank all of you who have kept up with Brett and how he is doing. I can not tell you how much your comments and support have meant to his mother and I. You guys have been a source of much needed comfort and support. I can not thank you enough.
As you know, Brett has shown progress and improvement in his battle with his illness here recently. For that I give God all of the credit. Sure, Brett has had treatments and things like that. But the doctors said before the treatments that they did not expect it to have any affect on Brett's illness. And, the doctors are not sure why Brett has had the improvements that he has had. But I know. God is working a miracle. I truly believe that. I believe God is more powerful than this illness. So, I am putting out a special prayer request.
My son has not been able to talk for the last 3 1/2 to 4 months. I miss him. I miss hearing him. I miss being able to talk to him and listen as he talks to me. I want to hear his sweet voice again.
I know God is bigger and more powerful than this illness. And I know Brett can talk again if God wills it. So, I am asking that you please pray for Brett to talk again. What a Christmas miracle it would be for Brett to talk! Please, when you pray, ask our Father to loosen Brett's tongue and let Brett once again talk. With God all things are possible!
Thank you,
Joe Jackson

Posted Dec 10,2008 (by Tanda)

We took Brett to the Oncologist again yesterday for a chemo infusion. She had the results of Brett's last labs.
(R U Ready?)
His labs indicate that there is no infection in his blood or CSF, his protein levels are finally normal, AND the number of cancer cells is "MARKEDLY LOWER" than before! We actually made a huge dent in his disease!
Who can believe it?? Not me! I don't know how they did it but I feel so lucky to have had such excellent doctors taking care of him. He's not only stable, but he's getting better!! OMGosh, I never thought we'd get this far. When he made it to his birthday I was so surprised and I felt so lucky. Now we get to have him for Christmas as well and I am on Cloud 9!
There still isn't any solid improvements in his behavior or communication, but now I feel like we can work on that and we may actually get somewhere.
I've never been happier to have such a stubborn child bent on defying all authority! He's still alive! What a fighter!
I love my boys (you too, Joe). They are my life.
Merry Christmas!

Posted Dec 3, 2008

I am sitting here at the doctors office with my son. He had an MRI today. The doctor came in and told us that it looks better. She said the enhancement covering his brain is less. That is a very very very good thing. She said there was no sign of any new tumor growth. (so he has no tumors right now!). Very very good thing.
The only new thing they saw was bigger ventricles. That would mean he has a build up of CSF fluid. His neuro-surgeon said he was not overly concerned about it as it did not show any signs of pressure. They are going to draw out some CSF from his ventricular shunt reservoir and test it to make sure there is no infection in the fluid. So please keep praying for this. Pray that the ventricles are ok and he does not or has not developed hydrocephalus.
You know, I have been asking a lot of questions of God. I have been pleading with Him to show my a sign that He is there and He cares for my son. Today, I fully believe God gave us that sign. I fully believe it. This is the first MRI my son has had that looked better than the previous. And his neuro-oncologist said she wasn't really sure why it looked better! I think I know. I think God is helping my little boy. Praise God for today!
JoeBamaBlitz, Tanda and Family are moving to an apartment!

UPDATE - November 20,2008

Hi guys. This is Joe. Just wanted to make a quick update to let you know that we now have a home here in Birmingham! We singed the lease yesterday and are now starting the process of moving into our new place. We hope to have things set up enough by this weekend to be able to move Brett there. I can not tell you how much it will mean to us to actually have our family home again. We have not really had a home for 4 months. This is a big deal for us. I am so excited about it.
I also want to thank Azia, David, and the entire Canterbury family. Canterbury is the name of the apartments we lived at in Tuscaloosa. The people at Canterbury are great people. They have worked with us through this and have been just great. They have really helped to take a big burden off of our shoulders. And thank you Azia and David for coming here to visit. You guys are great.
Thank you all so much for your comments. It means a lot to Tanda and I to read them. The love and support that we get from you all is very precious to us. You just do not know how much your comments mean to our family.
This may be the only update for a while. We will be busy moving and such and I am not sure when we will get Internet access at our new home. If you would like our cell phone number for updates and such, please leave us your email address (you can make it a private message and only Tanda and I can read it) and we will be glad to give you our number. Thank you all so very much. Please keep praying for us!
Joe

Posted 11/20/08 by TPLAW:

Zuter is having a smoked pork butt sale to raise funds for Brett. If he can get 40 butts donated and sold, he can raise $1,000! Everyone please help: Press Here for Details

BamaBlitz and Tanda have created a new website for Brett
Brett's new website

ALL RIGHT TIDESPORTERS - ONE OF OUR OWN NEEDS US - RIGHT NOW!!!

Update - Wednesday, 10/29/08

Oh my gosh! We're almost there! Just 24 hours and we should be on our way out of the hospital! I'm so nervous! Today we're packing the room up and gathering as much information as we can about what we'll need to take care of Brett outside of the hospital.
So far, we're leaving here with 10 prescriptions, 4 machines, a wheelchair, a hospital bed, a bath bench, and all of the accessories that come with those things. Not to mention all the things we've collected as we've been here. We'll be responsible for administering his medicines, for bathing him, doing his range exercises, keeping his wounds dressed and clean, changing him, dressing his bed regularly, transferring him from the bed to the wheelchair and back, and whatever else comes up.
He'll be going to radiation via an ambulance for the next 3 weeks or so and when he's done with his treatment we'll move him to the apartment. Oh, the apartment! We're waiting to hear from their office. Red tape.
I don't know how we're going to pull this off. But it's sure going to be worth the effort to find out. Brett will finally be out of the hospital. We're so excited about that!!
Btw, we're really grateful for the donations that have been coming in lately. I can't express to you...I don't know how to say it in a way that would really satisfy me...but it has been such a relief to us to NOT have to worry about money and how to pay for things our family needs alongside Brett's tragedy. I feel unfair saying that and knowing that so many other people have sick children but no one to help them with their financial crises. But to you who have helped us by making donations (however big or small), thank you. From the bottom of my heart. Thank you.
Take care of each other. Time is precious.
Tanda


Thursday, October 9, 2008 was Brett's 10th birthday. Let's all make another donation to Brett as a birthday present. His family is halfway to their goal of $100,000. Come on guys and gals - we are winners! - let's get them across the goal line![/b]

Brett Jackson, 10 yr old son of BamaBlitz and Tanda

Tuesday Update~10/07/08

Brett went back to radiation this morning. He's only getting his spine done this week though. Next week they will probably start him back on radiation for his brain. He did well this morning until we got back from radiation and then he started having a cluster of seizures that lasted over 30 minutes. They had to give him his emergency seizure medication (given if he has seizures that last more than 5 minutes or recurr). They took him for a CT scan as well, just to see if there were any changes in his head.
His platelet count was still too low today so they are giving him extra. As soon as he's finished getting that the neurosurgeons will be able to remove the surgical drain from his wound.
His white blood cell count is low as well and we are trying to keep his brothers out of the room for the time being.
Brett's birthday is on Thursday! I'm so happy that he's made it this far, and at the same time so sad that he won't be able to enjoy it like he used to. We've just got to do the best that we can for him. He deserves that much.
If we can get him safely through radiation and chemotherapy, we want to get him to New York in November to be evaluated for the clinical trial. If they accept him again, we will need to be ready to pay for the treatment. Unfortunately, our fundraiser is at a stand-still and we're just shy of being halfway to our goal of $100,000. If you can think of any other ways to help us make this goal, please contact us. Brett deserves our best shot.
Sorry this update came so late and thank you for checking in. Take care!
Tanda

Update 9/19/08 - Friday night

First, we would like to thank two very special guests who have visited this Care Page. Those guests are Ellen Sonet and Courtney DeNicola both of Sloan-Kettering Hospital. Ms. Sonet is VP of marketing for Sloan and Ms. DeNicola is a media associate with Sloan. Thank you for taking the time to check on Brett and his condition. Hopefully we will have Brett at Sloan soon to get the treatment he needs.
It looks like your calls and emailing to Sloan-Kettering are doing some good. It would appear that we at least have their attention now. Please keep up the calls and emails!
Still in the Special Care Unit. We're hoping that we can get moved to a regular room later today. We've decided to start him on radiation therapy next week. The doctors seemed to think it would help. We're still keeping New York on our radar. If Brett gets a little better, and we can get New York to take him, that's the next step for us. We're still trying to raise money for the treatment there.
We're overwhelmed by the amount of support we've gotten. The net has amazed us. You guys are awesome. Brett would be overwhelmed as well. Thank you.
Joe & Tanda

Email addresses of doctors at Sloan-Kettering:
Dr Khahoo: khakooy@mskcc.org
Dr. Kramer(Head of the Department: kramerk@mskcc.org

Article in Crimson-White UA Newspaper 9/12/08 Article in Crimson-White UA Newspaper 9/21/08
Crimson-White Article

Tuscaloosa News letter to the editor 9/16 Link

Link to Tuscaloosa News 9/12/08 article: Link

_
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

Update 9/16/08 Posted by Brett's grandmother on this thread (p.3)

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.
____________________________________________

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 $100,000 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

Update 9/14/08 Sunday morning

Our extubation was successful!!! Brett's off the ventilator and breathing well on his own. They will hold him here in ICU for a couple of hours, just to be sure, then they want to put him back on the floor! OMG, we are so relieved!!!

Thanks so much for riding this wave with us. It really is comforting to know that we're not going through this alone. We'll update again soon!

Tanda

Thank you Kupcake for this update.

Very tragic situation for such a young life.

Kupkake,

Thanks for the update. I sent BamaBlitz a PM with information regarding how to get help from St. Jude's in Memphis (a friend of mine used to work the ICU there), but wasn't sure how else to get in touch with them. Thanks for the donation site and the carepages info.

CTG

quote:

Originally posted by CrmsnTydGrl:
Kupkake,

Thanks for the update. I sent BamaBlitz a PM with information regarding how to get help from St. Jude's in Memphis (a friend of mine used to work the ICU there), but wasn't sure how else to get in touch with them. Thanks for the donation site and the carepages info.

CTG

St Jude is a most wonderful place. I have toured it and met many of its staff and talked to parents and patients. It is truly the hospital that HOPE built. It is a one of a kind place. (You can tell I kind of like it!)

Physician Referral Line Parents who wish to have their children treated at St. Jude must have their child's physician contact us by:
phone: (866) 278-5833
email: referralinfo@stjude.org physicians: refer your patient online

To refer a patient to St. Jude, the child's physician must make contact with a St. Jude physician. The physician may call toll free 1-866-2ST-JUDE (1-866-278-5833) or request a referral online. Here is link to referral page. http://www.stjude.org/referringmds

St Jude also has a residence house called Target House (provided by Target) for long-term stays. Target House has two bedroom family units and families can stay together.

St Jude will also treat any child it accepts free of charge. It accepts whatever insurance the parents have. Then it meets the rest of the cost.

Parents can concentrate on their child's health instead of having to pay bills.

I could go on and on. But if you need more information go to stjude.org and you will find almost everything.

I would love to see them there too. Thanks CrmsnTydGrl! Maybe you can get this to them too!

thanx for the updates and the site info. and i thought childrens hospital was great.will be praying for this family

keep this one bumped up

So much for photobucket -

One more time

Help keep this one bumped up

No child should die in the dawn of life.
Danny Thomas, founder of St. Jude Children's Research Hospital

Guys, thank you. I am here at the hospital with Brett and came across this thread. It means a lot to us to know that he and we are being thought of.

This is hard. It is the hardest thing I have ever had to do. It is hard having to watch him go through this and not being able to do anything. There is no known cure for Brett's condition. It just does not seem fair that this beautiful 9 year old boy is having to go through this.

Bama starts football Saturday. Brett is a big Bama fan. We had looked forward to this season. And now we are here at the hospital and the season just doesn't seem as big as it was before. But, God willing, Saturday we will have the game on and I think my son will enjoy it (he can no longer communicate). Please just say a prayer for us and for him.

We have a CarePage set up for Brett that we update everyday. The address is http://www.carepages.com/carepages/brettjackson You have to register but it is free. (There are pictures there of us and Brett...some of the pictures of Brett are tough to see...just to give you warning. But, he is doing a lot better now, just can't talk or walk right now...but very alert though).

Thank you all very much. Here is a picture of Brett, myself, my wife, and his grandpa.

my heart goes out to you and your family.though i have a SPECIAL child in a wheel chair,she is relatively healthy. will continue to pray that all goes well and God will reach out as only he can do.