medulloblastoma

My son is 3 1/2 years old and had just been diagnosed with medulloblastoma. He had surgery to have the tumor removed but he also has spots on his spine. The doctors say he has a very aggressisve form of medulloblastoma and prognosis is poor. Trying to figure out which option would be best for tx. He can do the standard tx with chemo and radiation. This impairs cognition greatly. We could do the stem cell/bome marrow tx which is a newer tx with high levels of chemo. It sounds like the radiation has a slightly better chance but so many side affects. Anyone have any ideas?

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Our daughter had diff degree of it and is older so it is dif than your son. My advice is to pray for advice from God and that He will guide you to the right procedure from the right people. I prayed from the moment I knew and 6 months later havent stopped because I believe that only He can truly make things right.
I am DEEPLY saddened by your story and am praying that our mighty and loving and healing God will put His hands upon your situation RIGHT now and bring you all healing, comfort and understanding during this difficult time. God can overcome all of this.

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Julie1234

I am so sorry to hear about your son. I will pray that he does well with whatever treatment you choose. My son was diagnosed with medulloblastoma this year right before his 3rd birthdat but his was at a different stage for your son so im not sure which would be better. There is this group on facebook that I joined and it has helped a lot! It is called Parents of Kids with Medulloblastoma. Everyone has a different situation with their children and their prognosis so im sure someone in a similar or same situation can give you great advice.

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I meant before his 4rh bday.

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Thanks for the replys. We are currently going to the University of Iowa Hospital. Anyone know of the best hospital around for treating this?

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I do know a girl just finished her treatments at Blanks children's hospital in Iowa for ewings, but had her surgeries at the university. I know they were very happy. Would u like me to forward this family your email? I know they would be more than willing to give you advice. Maybe get consult from the big sarcoma centers like md Anderson??
Marla

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Our daughter (age 5) was dx with anaplastic medulloblastoma and had proton radiation at MD Anderson in Houston and we are now starting round 3 (of 6) chemo there. I would recommend them as they are experts and see many cases. I have also heard good things about Dana-Farber, Boston, LA Children's (Prof Finlay), St Judes (Dr Gajjar). It is good idea to consult one or more of these international experts before you decide on treatment.
Nigel

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My daughter was diagnosed at 22 years of age with medulloblastoma. Also had cancer cells in her spainal fluid. She is 25 now and doing wonderful after 1 1/2 years of treatment. Although all cases are individual, there is a group that is nation wide. It is where Doctors join in nationwide and give the best protocals for treatment. It is called COG, Childrens Onocolgy Group. Treatment should be the same as far as chemo and radiation. In saying that I still understand each case is different. My daughter has had treatment at the University of Columbia, Missouri then transferred to Arnold Palmers Children Hospital in Orlando, Florida. She continues to be seen to this day and is presently NED. No evidence of disease. Her treatment at these centers has been wonderful. May the Grace of God wrap around you and keep you strong. I am here as a friend and will be here if needed.
God Bless,
Kim

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I am so sorry to hear about your son. They probably told you he is poor risk because of age and spots on the spine. You need to go to a top center:

St. Judes (Dr. Gajjar)
M.D. Anderson
Memorial Sloan-Kettering in New York
Dana Farber

These places will probably recommend the high dose chemo with stem cell resue. The only other thing I can suggest is to find out if you are one of the 20% of people who have tumor that signals with the Hedgehog Pathway. The treatment for these tumors is in advanced clinical trial and is called Vismodegib (trade name Erivedge). Another thing to look into is convection enhanced delivery (CED) of anti-tumor agents through the blood brain barrier. This was developed for an even worse brain tumor called DIPG but it might be worth a call to see if they can do it for high risk medulloblastoma. It is currently available at Columbia University Medical Center and Sloan Kettering, both in New York City.

The other suggestion I have is that since you are just over the age cutoff for radiation, go with proton beam radiation. It requires a hugely expensive facility and is only located in a handful of places. Just search protontherapy.org for places that have it. MD Anderson, Dana Farber, and Children's Hospital of Philadelphia (CHOP) offer it. It is more accurate than X-rays and does not exit the body so it will be escpailly good for the spine.

One more thing. University of Pennsylvania along with CHOP, and to a degree Sloan Kettering, recently announced some breakthroughs they have had with B-cell leukemias. They have figured out how to genetically engineer T-cells to multiply, recognize cancer, and destroy the cancer. It works because they found a target on B-cells called CD19. If anyone has figured out a unique target on the medulloblast, this UPENN appraoch should work. It's worth a call to all of these places to see if anyone has made any headway on an equivalent of the CART-19 trial for medulloblastoma. I would call Dr. Grupp at CHOP to find if they have a T-cell therapy for medulloblastoma (probably not) or if he knows of any institution that will be attempting a trial (Sloan Kettering would be my first guess).

One bright side of your situation is that by being poor risk, it puts you at the front of the line for any innovative treatments, if there are any.

As a last resort, there is the Burzynski Clinic down the street from MD Anderson. The top hospitals I listed above will tell you that Dr. Burzynski is a quack and a fraud. However, his anteneoplastons are available for clinical trial under the supervision of the FDA and NCI just like every other clinical trial.

Try to get a team of friends together to search the internet for you for new treatments. It is worth it to cold call all these hospitals. Miracles happen. Look at emilywhitehead.com as an example of one miracle after another. She was the first child "cured" of her leukemia by her own genetically engineered T-cells. She hit the Power Ball of cancer treatment by being close to death and being the first child to be offered this amazing treatment. So my point is that if you cold call enough hospitals, maybe you can hit the lottery and be the first to be offered some novel treatment for medulloblastoma.

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My wonderful son john turned 4 and 1week later had surgery for a medullablastoma and spin spread stage 4.....he is now24!!! That was 20 years ago. Love, love, love that kid of yours. And I feel that is a good age for kids they listen to you but do not understand how serious it is. I know this might sound strange, but try to make it fun for you child. Get new small items for treatments and such. Love to you and yours, marykay

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I would love to know if any of you with Medulloblastoma had Botox to the neck or have started growth hormones. If so, how is that going? We have had both done, and we are having some issues with the medical Botox.

Thanks
Kelley

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Its a new year and I hope you have some answers to your prayers.
God Bless,
Kim

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Julie, I was just checking in to see how you and your son are doing,

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We are at St. Jude receiving tx. He has done 7 of 31 radiation tx so far. Right now I can't slow him down. Thanks for checking in. We are just trying to take it one day at a time.

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Radiation does damage the brain. My son was a little over 4 years old and got that treatment--and yes he is "special". But the chemo drugs do a lot of damage to hearing and kidneys...but later in life neuropathy is very painful and troubling too. Hard choices. 20 years ago they would not radiate a kid under 4 due to the damage. The Dr would treat with surgery and chemo, and then when old enough then do radiation...and if you did not do radiation they would take you to court because that was the best option to keep your kid alive. You and your family are in my prayers. Marykay

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