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Making the most of the online groups

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stacia
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Making the most of the online groups
Hi everyone.
Thanks you for joining the CBTF online group. After you join, you will be asked to create a profile. Although we are here to talk about being a brain tumor parent, there is so much more about each one of you that you may want to share. This is a place to do it.  Once you have created a profile, you will be able to find people with similar stories, similar interests, or just people you want to know and ask them to be your virtual friend.
Thanks for helping the community gorw and helping people not to feel as if they are the only ones on this journey.
Best,
Stacia and Jessica
jgnichelson
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hello 
amandawozich
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Hi Everyone,

Haven't quite figured out this site yet!  Anyway, my daughter (who is now 4) was diagnosed with a low grade thalamic astrocytoma one year ago.  The tumor was resected at Children's Hospital Boston shorty after she was diagnosed.  They removed most of the tumor but her post operative MRI's show some enhancement in the tumor bed.  She has remained stabe since her surgery with no other treatment, but we continue to follow with reguar MRI's and will begin chemo should there be any progression.

I look forward to getting to know you all!
Amanda
Jessica Elder
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Amanda,
Thanks for the introduction! I'm glad you joined our online community. You are all welcome to introduce yourselves if you'd like to. Thank you all for being patient while our online communities develop. We are in the process of informing others about our communities and will soon start specific discussions and live online chats. Also, as more parents sign up, we can create additional groups based on your interests. If you would like to recommend a type of group, or request specific discussion topics, please feel free to post your ideas or send us a private message. In the meantime, please be aware that if you create profiles you will be able to locate each other and send private messages. If you have any questions please send us a message or email me at jriester@cbtf.org. Thanks!
Jessica Riester, LCSW
Children's Brain Tumor Foundation
ccoutts
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Hi Everyone.
This site looks great. I'm excited about being a part of it.
My name is Cheryl and I have a 14 year old daughter, Morgan,who was first diagnosed with a Medulloblastoma at age 2 and then relapsed at age 4. Since relapse she has been cancer free. While Morgan hasn't gotten off scott-free in terms of side effects from treatment she is a well adjusted, happy, 8th grader who has lots of friends, plays basketball, soccer, and track. She certainly has learning issues but is primarily main streamed with some resource room classes. She is doing well and is looking forward to starting high school next year. YIKES!
I know there will be many challenges ahead for my dear Morgan, but I am hopeful that some of you might be able to help us make that journey a little easier.
Looking forward to sharing ideas and information.
Cheryl
Diane Eveleth
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HI, I have a now 17 year old daughter Amanda who was diagnoised at age 10 with a Suprasellar Germinoma. Amanda 's doing well but continues to have many side effects from the tumor. Panhypopituitarism due to the tumor or treatment. .
ChrissieLW
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Hi

My name is Chrissie. I am married to Matt and mommy to Katie (8), Michael (4) and Timmy (7 weeks old). In September 2008 Michael was 'diagnosed' with unidentifiable lepto-meningial tumors. The tumor cells are coating every inch of his spine and brain. The tumor is thought to be low-grade & slow growing. He is currently being treated at Memorial Sloan Kettering but we have had 2nd opinions on both pathology & treatment at Dana Farber/Children's Boston, CHOP, Johns Hopkins & Duke. He has been on 2 chemo protocols so far and neither has shown improvement in tumor. He is currently receiving PT, OT & Speech therapy and is in nursery school 2 hours a day 2 days a week. I hope to be able to find support and friends here. Prayers being sent for all of the BT kids and families out there! 
~Chrissie
joestein
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Hi, my daughter was diagnosed with a diffuse intrinsic pontine glioma on May 21st, 2010 (9 days before her 3rd birthday).  We are in a clinical trial being administered at Sloan Kettering.  Today was day 4 of her treatment. 

Joe Stein

mummymarps
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Hi,

I am so glad to find this website!
I am mum to Jacob who is nearly 4. He was recently diagnosed with a low grade pilocytic astrocytroma and is currently recovering from surgery. Fortunately we currently dont need any further treatment just MRI's every 3 months to watch whats going on. The surgery went well with only a small amount of tumor left. We are now waiting to see how Jacob will be affected from the surgery and the tumor, currently he is having problems with his balance and speech and he has a weakness on his right side and uncontrollable spasms in his right arm. He was diagnosed and operated on within 3 days and two weeks on its still so surreal!

I look forward to chatting to you in the future.
Jessica Elder
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Hi Everyone,
Welcome to the Parents and Caregivers Group! Please continue to talk and introduce yourselves. Jenna's Corner is relatively new and we've been working hard to improve it and make it easier for members to use. Starting next month, we will continue to offer more live online chats and will create message board discussions. Please continue to check in and always feel free to post questions, comments or suggestions here.
Jessica
NIASIA
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Hello everyone my name is LaTanya I am a mother of 7 girls one of which is Mikayla she 10 yrs old now Mikaylas tumor was first discover in Jan of 2009 at the beginning the doc a CHOP just watch it and called it a mass unti that MRI in Jan of 2010 it start to grow it when we discovered that it was a Germinoa on her pituitary gland.Mikayla had a biopsy in Feb.and thand Proton Therapy following.Mikayla just a few weeks ago had another MRI to see the progress and thank God her oncologist(Dr. Fisher) said that he can barely see anything! Even though we are still dealing with some of the side affects of the treatment we can deal with that Im just thankful for the chance to breathe easy for awhile Im looking forward to meeting some of you because people that dont understand seem to disappear!

Chris Scheley
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Hello All,
   My name is Chris and I am married to Ann and the father of Elizabeth (18), CJ (16) and Nolan (6). Our son CJ was diagnosed with medullablastoma on March 23, 2010 and had surgery on the 24th. There was a total gross resection of the tumor, the tumor cells were not anaplastic and there was no evidenence of cells in the spinal fluid, so CJ is "average risk". The prognosis is positive but he has a long battle ahead of him. CJ is in the midst of his first cycle of chemotherapy, after 6 weeks of radiation.  Hard to believe he has to go through 9 cycles of chemo which means he will be completing his treatment sometime in the summer of 2011! He is very tired and occassionally nauseous.
    Hoping to connect with people who can relate to the feelings of "How are we going to be able to do this" and the certainty that "We will!" 
 

Jessica Elder
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Hi Chris! Thanks for introducing yourself. Many parents share the thoughts and feelings you have and I hope you are able to find them on our online community. CBTF also offers a parent mentor program. If you'd like to contact another parent (by phone) who has been through a similar situation you can email me at jriester@cbtf.org
Thanks,
Jessica Riester, LCSW
Children's Brain Tumor Foundation
andreagail
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Hi Chris,
My name is Andrea.  I have two children, Joe(6) and Livi(4).  I have been married to Matt for 10 years.  Our son Joe was diagnoised with a Craniopharyngioma tumor when he was 5 (Feb 26, 2009).  What followed was surgery, a 3 week stay at Hasbro (our local children's hospital) and a 5 week stay in a rehab facility for children.  This was not the end for Joe, despite the fact the Craniopharyngioma is not cancerous, it can regrow very quickly.  More procedures followed.  Currently Joe's tumor has shrunk, his next MRI is not until January.  Things look hopeful.
I know our experiences have some big differences.  One thing I can tell you is that it gets easier.  Life will never be quite the same.  My son's strength and continued positive outlook is an inspiration to me.  Don't be afraid to lean on friends and family, especially your wife; this is what helped me and continues to help me get through.
I know it's cliche but "one day at a time" and "live in the moment" are helpful things to keep in mind.
I hope it helps.
Andrea
ccoutts
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Hi Chris,
My name is Cheryl and I have three daughters, Morgan (15), Taylor (12), and Sydney (11).
Morgan was diagnosed with a Medullablastoma at age 2. I know she is much younger as diagnosis than your son CJ, but perhaps our journey and yours isn't as different as might first appear. Her tumor was also fully resected and she went thru 6 months of high dose chemo followed by a stem cell transplant. She unfortunately relapsed 2 years later and we went for Proton Beam radiation in Boston. She has been cancer free since age four. She is currently going to be starting high school next year and just recently returned from Montana with a bunch of brain tumor survivors that all participated in teh CBTF's Heads Up Conference. She is a happy, outgoing young lady with lots of friends. I am a mentor in the Parent to Parent program and would be happy to connect with you on that level if you want. Many of the emotions, frustrations and challenges that my husband and I faced are often common to all parents during this very trying difficult time.  If you are interested, just let Jessica know.

Wishing you the best thru the challenging months ahead.

Peace.
Cheryl 

Chris Scheley
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Hi Cheryl,
   Thanks for your note. I am happy to hear that your daughter's treatment was such a success! I would very much like to connect on the parent to parent level. Any time I can speak to someone who has "been there" I feel better.

Best to you and your family,
   Chris
Chris Scheley
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Hi Andrea,
   Thanks for posting your comments. It definitely helps to connect with parents who share similar experiences! I am glad things look hopeful for your son! It is the hope that keeps me going. BTW the cliches have never been so true!

Best to you and your family,
   Chris
ccoutts
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Chris,
I remember when Morgan was going thru all of this, there wasn't anyone for us to talk to. Internet was just in its infancy and there weren't many groups out there with a parent to parent program. We felt very isolated and I remember saying that if we got thru this all that I would want to be able to give others some hope that they can too. So hopefully I can do that for you. Also, it may be a great idea for you to connect with my husband at some point. Dads certainly experience this so much differently than Moms and you might find that my husband (also named Chris) and yourself have many of the same thoughts. I know he wouldn't mind.
In the meantime, feel free to call Jessica or email her and get my email address and/or phone number. I too will reach out to Jessica to let her know we've connected thru the web site.

I welcome your call.
Cheryl
kristi
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Hi everyone!  I'm Kristi and have been married to Craig for almost 10 years.  I have a 7 year old, a 3 year old, and a 1 year old.  My 7 year old has an optic nerve glioma on his left optic nerve.  It is a new diagnosis and we are not really sure what we are dealing with.  If it grows, he will undergo chemo for one year.  We see a neuro eye doctor on Friday and depending on what he says, they may start chemo now.  We are scared and just want to know what we are dealing with.

I am praying for all of your children! 

--Kristi
beccal26
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Hi, My name is Rebecca and my 10 year old son has a tumor behind his optic nerves.  There is no way to do a biopsy without removing the skull and lefting the front of the brian.  Some of the symptoms he has is headaches, weight gain, and edema.  We are starting the steps to have the procdure done, and I am not sure what to aspect during and after the procdure.  He has a rare blood disorder that causes his blood to clot, he takes a aprin everyday and I am worried about the surgery. 
andreagail
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Rebecca.
My experience is , the more questions you ask of the surgeons, the more answers you get. Talk to the surgeon, tell them your concerns.  Ask them what will you expect during/after.  They may not give exact answers, because every situation is different.  My experience is also that if they say the surgery starts at 9:00, don't expect it to start until 10:00.  If they say to expect it to take 3 hours, expect it to take 6.  Longer is not necessarily bad.  Brain surgery takes percision. 
My 6 year old son also has a tumor near his optic nerve.  It is a craniopharyngioma tumor and has effected his weight as well.  He was diaganosed a year and a half ago.  After three different treatments (including surgery), he is doing well.  I remember how shoking and surreal everything was in the beginning.  Don't ever be afraid to ask questions, get second or third opinions and to advocate for your son every step of the way!

Best of Luck
Andrea

beccal26
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Thank you,
Well there is a change, the doctor is worried about the tumor being stucked to the hypothalmus and surgrey is out of the question.  Waiting to have blood work done and then if it shows  that the hypothalmus is being affected then we will watch and do surgrey when we are forced to.
I am having trouble dealing with not knowing what type of tumor and not knowing if there is cancer cells, how do parents deal with not knowing?
beccal26
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I am sorry to hear about your child, and I can understand how you feel about not knowing what you are dealing with.  My son has a tumor and because a biospy can not be done, we have no idea what type of tumor it is.  He is having symptoms and being tossed from doctor to doctor, and no treatment.  I hope everything goes well for your family and you will be in my prayers.
andreagail
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Rebecca,
The waiting and not know is the worst.  I feel as though there should be some other way to express it but there is not.  I feel your pain!
Have you gone for a second opinion?
  With our son the surgeon knew right away what type of tumor, just from looking at the MRI.  Of course there was  biospsy done to confirm, but this was done during the surgery to remove as much of the tumor as possible.  Also, he had two other procedures done to treat the tumor that did not involve surgery, Gamma Knife treatment and p32 brachytherapy. 
I know there are many types of brain tumors.  The only one I know a lot about is the one my son has.  I just know that when you feel so helpless and scared, consulting another pedatric neurosurgeon is helpful.
Best of luck.  You are in my prayers.
Andreaa

beccal26
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Thank you,
We have been to three diffrent surgeons, and one said he is not willing to take the case.  One said this is a rare type of tumor because there is tissue and they are not sure about the other signs of the tumor.  To do a bisopy could damage the hypothalmus more, so they are not ready to any type of surgrey.
I just feel so confused and lost, and talking with you and the other parents are helping me understand my feelings.
Your family is in my prayers.
andreagail
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I can remeber the scared confused feeling very well. It sounds like you and your son are in a tough position.  It also sounds like you are advocating for him and doing the best you can do.  Best of luck!  You will remain in my prayers. 
Andrea

momof4kids
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Hi everyone, first off I hope I am posting in the right place! My daughter Megan has just gone back to school 3 weeks after having her third brain surgery. Megan was diagnosed last Dec. with an astrocytoma tumor.She NEVER experienced ANY symtoms .It was a freak accident that  led us to the emergency room.While cheering at her junior high basketball game she was hit hard on the head with a basketball.The school nurse thought we should go to the ER & have her checked for concussion,instead they came back to us after doing a CT scan & said they see a mass the size of a lime on the back of her brain. Next thing we know we are with a neurosurgeon telling us they will operate ASAP. Next morning it was 10 hrs of surgery then they came back & said they didnt get it all. Next day 41/2 more hrs of surgery. Megan spent 3 months after that doing intensive rehab therapy (she experienced left side paralysis,double vision,slurred speech & cognitive problem) she went from being an A student to not being able to put sentences together. But she's a fighter & very competitive so she competed within herself to get better & beter. Unfortunately this past Jan. at her 1st MRI checkup they discovered the tumor had recurred (rare they said) & had to endure surgery once again.Her reaction after hearing the bad news (I cried and so did dad) but Megan just said oh well I got through it once I'll get through it again! Thankfully though because it was so small in size she experienced none of those same after effects & was back home in 3 days & back to school part time in 2 weeks, now going full time! She is my WARRIOR & MY HERO !
andreagail
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Hi
Welcome to the group.  My son had similar problems after his surgery and also spent 3 months in intensive rehab (he was 5).  It has been 2 years since his diagnosis (2 years today) and 1 year since any treatments.  He was also a hard worker with a postive attitude that still carries him through today. 
Your daughters outlook is amazing.  Something we can all learn from.  Thank you for sharing.

andrea

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