Anyone familiar with Pontine Gliomas??

my son was dx. with IDPG on 9-3-o3.We have study many diffrent tretmets.he finished his rad, will be 2 years 11-7-03. our little guy is still doing very good is now in kindergarten and loveing it.he took gleevec for 9 months,he lost all the steroid lbs plus a lot more he was very sick while on the gleevec.chemotherapy has shown no help to children with brain steem gliomas.you must ask qustions any and all that you can think of, write them down so you don't forget anything. always remain calm when talking to the Dr. so that you don't miss any thing that they say to you. ask God what he would have you do before doing anything.our son has been on ruta grav and calc phos for 15 months.I am going to check out josiahupdates.com to see if I can find a way to talk to other people and familys I'm not very good with the pc. my son was only given 10 to 12 month at best, that 26 month and 15 days ago.

http://caringbridge.com/cb/viewHome. Do here is Cody's website to keep everyone updated on his cond'

I am writing because I want to provide as much information to parents of children with this devistating disease. My daughter lost her battle with diffuse pontine glioma in April of 2006. My thoughts and prayers are with you. Zarnestra was one of my daughters kemo study drugs. She had'nt had any sucess with that drug, one of the biggest side effects for her were severe hives, she eventually had to discontinue use of the drug. Please, if you need any emotional support, or have any futher questions, email me --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---I will be happy to help out in any way that I can. I am praying for your family.

I am so sorry to hear of your childs diagnosis. My daughter lost her battle with diffuse pontine glioma in April of 2006. If you need any emotional support or have ANY questions please email back. My prayers are with you.

I noticed your message on the board. I have information if you are intrested. I am praying for your family. email at --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---thanks.

will be happy to offer any information you may need. my daughter passed away in April of 2006. Please contact me anytime.

Tabitha, I lost my daughter in April of 2006. She too was an angel and fought with everything she had I can certainly sympathize with you and your family. If you need any support please email, I completly relate.

I have posted here before. My 8 year old daughter has been diagnosed with DPG on March14/ 2005. Treatment: Radiation with Temodar Chemotherapie 42 days on low dosage. At the end of the 42 days the Tumor did not respond to either radiation nor chemo, we were sent home to spend quality time with our daughter. Docs did not want to continue maintenance dose of temodar, but I forced the issue and continued. We had a up and down summer but she returned to school in September/05. 2 MRI's during the summer showed no progress of the Tumor, swelling and the cyst of the tumor had disappeared. We were hoping, but 5 weeks later the ugly beast raised it's head. The latest MRI showed that the tumor doubled in size within the 5 weeks. Docs want to discontinue Temodar and switch to VP/16 instead because I will not accept the docs discontinuing all the treatment. I don't know how much time we have left, every day is precious. She has lost the use of her left arm and her left leg does not want to cooperate anymore and of course dizziness. Increase in decadron did not bring any change. I hear lots of you talk about ruta 6c and calcera etc. Which experiences did you make with complementary therapie, which ones did you find worked and which ones were a waste of time. My daughter takes Boswella Serrata, a natural anti inflammatory, I contribute the fact that we survived all summer on a very low dose (0.5mg 2x a day) of decadron to the boswella.
Our children do not deserve a life sentence like this.

Back in November 2004, my first grandson was diagnosed with
a DPG. He was 4 years old at that time and was able to
celebrate his 5th birthday last March. He was given radiation
and took Temodar until August. Unfortunately, the tumor after
showing signs of shrinking, began to grow again. Since
August, he has had a shunt put in place that has seem to have
helped with the symptoms. He was also given Gleevec, but it
gave him side effects and based on his physical abilities seems
that it did not affected the growth of the tumor. After careful
consideration with the child's doctors and realizing that the
tumor was still growing, they stopped the chemotherapy.

Today, thanks to God's mercy he still with us. He can no
longer walk on his own, the weakness on the left side of his
body has increased, his speech is slurred and I am watching
how the spark of life is slowly but surely dimming. His little
body, swollen by the steroids, is slowly giving way to an end. I
do not have an idea of how much time I will have with him.

Surely we have had wonderful moments with him. He stills
plays puppets with his stuff animals and we savor the smiles
that we see. He was able to attend school for most of the time
this Fall, we have watched him dressed up like Woody,
Superman, Buzz Light, Batman and every character under the
sun. His active imagination have given us joy and memorable
moments that will be with us forever.

This illness will take you though a journey of good and bad
times. Make sure that you make the best of it. Do not dwell
on what you could have done or not. DPG just is. It is not
anything that you have done wrong. It affects the rich as well
as the poor, it does not discriminate.

Make sure that as individuals and as a couple, you begin
looking for a support system. A person whom you can trust
with your deepest fears, strengths and weaknesses. Every
aspect of your life will be directly affected by this illness. Make
sure that you maintain a healthy and nurturing relation with
your spouse. Personally, I am a believer in Christ, in Him lies
my trust, He has been my pillar of strength. My husband has
been my best friend during this time, I appreciate his
understanding and willingness to be not only by my side but
also by our daughter's side. This is a time for family, do not
burden yourselves with past hurts that only bring discord.

Forgiveness is hard, however, it is liberating. Forgiveness does
not mean forgetting, but means that you can look back to the
event that hurt your feelings and still look forward to the future
that is ahead. Unforgivenes paralyzes you and does not allows
you to move forward in peace or grow into whom God intended
for you to be. Forgiveness is not a feeling, but a conscious act
of your will. (Weather you are a believer or not)

I guess that I have not answer your concerns about DPG.
Looking back to the last 12 months, what I can share is my
heart with you. I hope and pray that you walk strong through
all what lies ahead and at the end, regardless of the outcome,
you and your loved ones are stronger, united, wiser and better
persons.

My prayers are with you, every family and every child with this
diagnosis.
May the Lord Bless you always.

Hello to all, I do know the fight you are going through. We lost our son Michael at age 12 on September 18th, 2004. He told us he wanted to be a microbiologist and study cells and cure diseases like cancer. A very lofty goal. We continure the fight through the Michael G. Curry II foundation for cancer research. We do not have the foundation for us but for all of you and all the kids who will get this terrible form of cancer. Hopefully with our help they will find a cure.

To all of you. We pray every day for all of the children who have this disease. We will continue to pray for them and there families. The fight your child will have will be tough on you, the child is tougher than you imagine tho. God bless all of you.

If you wish to see what we are doing visit us. www.nomorewasteddays.com

Send us an e-mail at the site to include your child in the prayers or I will be happy to add your child to the site and your website addresses so that people can visit there and answer your prayers.

Thank you
Mike C.
Father of pontine glioma victim
No More Wasted Days
God Bless Us All