The diagnosis

bkokc00 · **Posted:** 16 Oct 2009 08:29

The doctor sat down with us yesterday, they are still trying to figure out exactly what the tumor was but here is what they do know:
it's cancerous
it's aggressive
it's very very rare
and the cells multiply fast.
So that said, since the tumor has cancer cells that multiply quickly they are pretty sure while it was in his brain it has sent out cancer cells also, which means chemo, very aggressive chemo.
We are looking at 27 weeks of treatment, my daughter will have to be in the hospital with him 4-5 days to do chemo treatment, go home, go back 2 weeks later repeat chemo.
In between they are talking stem cell harvesting, bone marrow transplant , possible radiation etc, which requires hospital visits also. Basically the next 27 weeks my grandson will live most of the time in the hospital.
Since it's a very rare tumor they are sending part of it to pathologists thruout the USA to get opinions, they will also discuss his case with the top pediatric neursurgeons and ped. oncologists nationwide and get their input on how they would treat him and if they agree with the treatment plan that they told us.
We don't have any guarantees. I am angry, so angry because no child deserves this, i am sad looking at this perfect little boy and knowing the suffering he's facing but i'm also determined. I'm determined that we will put up the best fight we can to beat this, at this point we don't know how we will handle it all, but whatever it takes we will fight for this little boy, because we love him.
Say a prayer, thanks.

Karen_Perea · **Posted:** 16 Oct 2009 09:49

He is in our prayers. If you or your family need anything or if there is anything we can do let us know. I know it is not fun sitting in the hospital.

Consumer_Queen · **Posted:** 19 Oct 2009 21:04

Oh Britta I am so sorry! We will keep you guys in our prayers. Please keep us updated!

tlv1122 · **Posted:** 20 Oct 2009 14:03

Your in my prayers!

ThunderSnow · **Joined:** 04 Jun 2007 18:51 **Posts:** 164

Now is the time to do research and talk togther and to get support start here http://www.braintumor.org/GeneralMenu/
also st judes is a awesome place for childhood cancers contact them! They have been making strides in brain cancers....
you and your family are in for one hell of a ride and things will be rough and you will need support... Start making list of question to ask your doctor. since your doctor is requestin seconds and other stuff there is a chance that the little guy will have to go to another hospital...
You and your while family need to go and get flu shots NOW all of you will need to stay healthy..
his immune system will be messed up and he will not be able to fight off the flu or other things.
you are this childs advocate and you need to fight for him if a dr says something you do not like or understand ask questions .
Talk to others places and get as much information as you can knowledge is one of the best tools that people have in fighting cancer...
but call st judes and talk to them this place is awesome and your daughter will have so much support from other moms who are going through the same things she is.... good luck and I have put him on the cancer prayer list.
Thunder
feel free to contact me I have a friend who just finished treatment and she talks to people who are entering this horrible phase.. if you would like to talk to her pm me and I will send you her email address

bkokc00 · **Posted:** 22 Oct 2009 22:34

and an update:
they finally figured out what type of tumor it is, and well it's not pretty. the name is:
extraskeletal myxoid chondrosarcoma or EMC, this according to the doctor is an extraordinary rare tumor for a child (average age of patients with this tumor is 40 or older) and very very rare to be seen in the brain.
So here is the dilemma, since it's so very very rare they are not sure how to proceed. Chemotherapy has not been very effective with this type of tumor and radiation in mass is bad enough for an adult but for a baby his age it would cause long term damage, severe damage.
They are now weighing the risks, try chemo and put him thru it and hope for the best, or do nothing and monitor him and see if the tumor develops again and then proceed with treatment. I think they are leaning toward waiting. This is unchartered territory for them and appearently for the whole medical field dealing with this tumor in a child, the doctor that explained this to us has 31 years of experience, he worked at st judes for 14 years, the sarcoma expert is a world leading expert when it comes to sarcomas in children but this has them baffled.they reached out to their colleagues nationwide and one replied to them that he has HEARD of one case.
All i know right now is this:
i will treasure every minute with this boy
we are looking at a bomb that might go off and then it might not
i do know we have the best doctors available
i always thought my little asher was special, but never realized he was THIS special, sadly

we will see what the doctors come up with and decide from there, keep praying, thank you all

PS: on a brighter note...bob stoops came and visited the cancer floor today..and yes he came and visited my grandson, he even gave him an OU football and signed it To Asher-a future sooner... bob stoops...i will post a pic of it tomorrow
you might not be an OU fan, but you gotta give the guy some credit, i heard he does it a lot, and really cares about the kids, he doesn't do it for media coverage, the people i told about this had no idea he does this

couponprincess · **Posted:** 22 Oct 2009 23:00

Thanks for the update, I am so sorry that Asher has to go through this. Wow.. this is like a 1 in a trillion case. I am praying for a cure, and that no cancer spreads, and the dr's wisdom.

bkokc00 · **Posted:** 23 Oct 2009 12:01

couponprincess · **Posted:** 23 Oct 2009 15:06

Awee.. how sweet.

daisydowdell · **Joined:** 18 May 2007 21:19 **Posts:** 18

Young Living essential oils have healed so many people of different things. A dear friend of mine was given 6 months to live with melanoma, and she didn't accept it. She started with the essential oils and has done many healing regimes. She has found many naturapathic solutions that have completely turned her cancer around, but all the time praying for Jesus to heal her and He has. All I can say is I have seen what doctors would say was a miracle, because they can't explain it. NEVER GIVE UP!!

Princess Rachel · **Posted:** 24 Oct 2009 12:12

Oh wow. I will be praying for your grandson and your family. Is your grandson the one in your avatar?

I pray that they can find the best way to cure him without causing him any pain or discomfort.

Consumer_Queen · **Posted:** 24 Oct 2009 13:33

Thanks Britta I am posting this on Twitter! I wonder if we could find any Doctors or information some how this way? I would like to set up a fund for you on the board where people could donate if that is ok! Do you have a paypal address?

RT @ConsumerQueen Baby with rare brain tumor called EMC needs help. Looking for Doctors http://tinyurl.com/yhqx58v Please RT ! @bkokc00 's grandson

bkokc00 · **Posted:** 24 Oct 2009 21:22

yes i have a paypal address it's under bkokc2@aol.com, i set up a donation account at Allegiance credit union also, i'm also in the process of setting up a paypal account under his name that will link to his donation account, not sure how long that takes to set up, i need to verify it and don't have online access to it yet.

Consumer_Queen · **Posted:** 28 Oct 2009 07:18

ok let me know when its ready

bkokc00 · **Posted:** 29 Oct 2009 13:22

i am so upset, no take that back, i am FURIOUS! my daughters boyfriend and the father of my grandson (not like he acts like one, but anywho) told my daughter on monday that he doesn't think things are working out and she has a week to think about if she wants them to stay together or not.
Strike 1-like she has nothing else to worry about right now, right?
Yesterday he tells her he decided one will have to move out of their apartment, him or her.
Strike 2
Today my daughter gets a voicemail from the apartment office telling her since her boyfriend told them he wants off the lease she will have to get out also unless she can show proof of income 3 times the amount of rent...nice huh? yeah considering my daughter has been sitting at the hospital for 3 1/2 weeks day and night non stop..you guessed it..no income.
Strike 3
I am furious, i am beyond furious, how low can a person get? but that's alright..karma comes back to bite ya.

The diagnosis

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