Welcome

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 Kelli and Ashlee created this site to raise Brain Cancer awareness, provide easy access to resources, and compile a list of online support for those in the thick of Brain Cancer. Both Kelli and Ashlee have experience as caregivers for their loved ones, who both were diagnosed with Glioblastoma Multiforme Grade IV. In addition to providing you with resources, they are here to share their stories and offer you their personal support. Please look around and feel free to contact Kelli or Ashlee with any questions.


Our mission is to provide a place where you can find brain cancer-specific resources, local support groups, hospitals specializing in brain cancer treatment, clinical trials, and local community awareness events.

 

 

39 thoughts on “Welcome”

  1. Hola mi hija de 15 años tiene un ganglioglioma grado 3 desde 2012 la estamos tratando con inmunoterapia porfavor cualquier informacion podrian enviarmela en español gracias

    1. Bibiana,

      Ce me rompe el corazón al enterarme del diagnóstico de su hijas. Suena como una luchadora. No estoy familiarizada con el tumor gangliogloma y tendré que hacer una investigación por mí misma. Voy a ver qué puedo averiguar acerca de los tratamientos y enviar se lo. ¿Puede leer Inglés? Kelli

  2. Husband, Lewis GBM, dx Sept 11, 2012 after bleeding stroke December 22, 2011. 2nd reoccur ance February 4, 2014. In clinical trial plus avastin. No new tumors but strugging and failing fast. Thank you.

    1. Kristina,

      My heart breaks for Lewis. I do not know if you are a religious person, but I pray for the “GBM Family” as I refer to us all, daily, and I pray for healing, then strength for the fight, peace during the transition, and comfort at the end of the journey. You have no idea how many are praying and sending positive thoughts your way. I hope that you never think that you are alone in this. Kelli

      1. Kelli, THANK YOU for your prayers. I believe that my God is in control of this and all things. Lewis and I pray continually for this group and for his healing. We are blessed and know he is healed in the end, here or after this life!

    1. It truly is a labor of love done in honor of my late husband. It makes me smile when I think of what his reaction would be if he could see all of this now. Kelli

  3. My husband was dx with GBM in Jan 2012. Had his 3rd surgery this March. Will start second radiation this month. Thanks for info.
    Another source for those with brain cancer who live in Florida is The Sontag Foundation. They are very helpful.
    http://www.sontagfoundation.org

    1. Joan,

      Prayers for your husband and I hope that you are taking care of yourself as a caregiver. Thank you for the additional resource! I will make sure that it gets added to our list. It takes a village to walk this journey and we couldn’t do it without the help of others like yourself. Kelli

    1. Terri,

      How old is your mom? Was she having any symptoms that would have lead you to believe she had a tumor prior to the wreck? How is she doing? Kelli

  4. Olá, eu sou brasileira e filha de um homem que , infelizmente, tem o GBM , ele já tem um mês de cirurgia , ele não teve sequelas , apenas falhas na memória. me ajude, a perspectiva de vida , nestes casos, são baixos. Estou desesperada e não sei o que fazer. Ajude-me como eu posso aumentar o tempo de vida dele? além da radioterapia e da quimioterapia , tem algum tratamento complementar ? Ajude-me! Por favor. me ajude

  5. Hello , I am Brazilian and daughter of a man who unfortunately has the GBM , he already has a month of surgery , she had no sequelae, only failures in memory . help me , the prospect of life in these cases are low. I am desperate and do not know what to do. Help me how can I increase the life time of it? in addition to radiotherapy and chemotherapy, have some complementary treatment ? help me! please

  6. Hi my daughter was diagnosed with Gbm phase 4 and she is only four years old. Is anybody going through the same or has been through this situation with a son or daughter this young?

    1. Leticia,

      Personally, Ashlee and myself are not familiar with GBM in children as it is the men in our lives that were touched. Are you on Facebook? There is a private group there that I admin and we do have parents of children with GBM in the group. You might find more information and support there. Please let me know if you would like to join and I will get you the information. Kelli

      1. Hello Kelli, I’m interested in your private Facebook page. Our mother was just recently diagnosed with GBM primary brain tumor on April 9, 2016 at the age of 62 with no previous medical history. Her symptoms began in November 2015 with severe anxiety and depression that progressed with dizziness and blurred vision. It took a 3rd family doctor and several months to finally approve an MRI and correctly diagnose it. We’re looking for any and all information we can get to help her cope with this disease. Thank you for everything you are doing!

        1. My mom was just diagnosed in May 2016 stage 4 she has just finished her round of chemotherapy and radiation. But sh is going down really fast she is now not able to walk without assistance and need 24 hour care. This has been totally devastating.

  7. Hi there, my dad was diagnosed 2 months ago with GBM IV, after successful removal of the tumor he is bound to start radiation and treatment in a week. Though he has always been very healthy, I am scared of what to expect. All we are being told is so grim. Don’t know what to expect or how to help ease the effects of treatment.

    1. My husband diagnosed one year ago. Wish I had been told that chemo/radiation may not have any effect or that tumor always returns. Ask doctors many questions as they don’t always volunteer info. Start discussion about trials now.

      1. Christine,

        So sorry for the late response. I never got a notification that you had posted. I am very sorry to hear about your husbands diagnosis. GBM is a horrible tumor and I pray everyday that there is a cure, or something that will substantially extend life, and a good quality of life. Information is so limited for GBM. So many unknowns about this type of brain cancer. How is your husband doing now? Please let us know if there is anything we can help with from here. You can reach me personally at kelli75067@yahoo.com.

        Kelli

    1. Clay,

      So HAPPY to hear that Debby is doing great. We need MORE of those kind of stories. Please keep us update and let us know if there is anything we can do from here. You can connect with me via Facebook or email me directly at kelli75067@yahoo.com.

      Tell Debby we said to Keep Fighting! and Stay Strong!

      Kelli

    1. Jason,

      I am not familiar with glial neoplasm. Is it a type of brain cancer? How is your mother doing now?

      My apologies for the late response. I did not get a notification that posts were waiting for approval/responses.

      Kelli

  8. Thank you for your efforts and dedication.
    My mother passed away December 1 2015 after a short 6month battle. She had Gliosarcoma which has the exact same treatment. Thanks to you and your Facebook page for the information and knowledge obtained for facing this beast.
    God Bless
    Jorge

  9. Hi, I was diagnosed with Stage IV GBM Oct. 27 , 2014. I had surgery Oct 29th. Followed by 33 radiation tx and 42 days of chemo. Then chemo was 5 days on and 23 days off with a higher dose. Had MRI in April 2015, showed I was in remission. Follow up MRI in July showed no growth, also in October 2015 clean MRI. Completed my chemo Dec 22 2015. Will have MRI tomorrow, Jan 22. I feel great, do what I want, and go where Im invited to give my testimony about God’s healing grace.

  10. I have just been diagnosed with this terrible tumor and will be starting chemo and radiation soon. I have been given four months to a year to live. Hoping to start treatments son by if it makes me too sick I will give up n treatments not sure I want that kind of quality of life at the end if I only have that amount of time left.

    1. Margaret,

      I am truly saddended to hear of your diagnosis. Do you have a support group? Are you on Facebook? I admin a private GBM support group there with over 2000 members in our community. Please let me know how you are doing and if you would like to join.

      My apologies for the later response. I didn’t realize that notifications were not coming to my email when items were posted here.

      Keep up the fight and never give up HOPE!

      Kelli

  11. Hi my husband has a gbm 4 he had surgery in .may and is now 2 weeks into radiotherapy and chemotherapy he is doing really well they said they removed everything they could see on surgery but I can’t help but worry about regrowth has I read prognosis not good with this tumour

    1. Hello Sharon,

      All I can say is that every single diagnosis means something different for each individual. My late husband fought for 17 months and Avastin seemed to cause his tumor to more than double in size. Others, have the same treatment plan, and live for 5 or 6 years without new growth. No one knows what causes a GBM tumor, they have no idea what triggers growth, they have no idea why some bodies get great results from Avastin and the opposite for other patients. It’s just a person to person experience, but each of use can relate to the other in one way or the other. I admin a private support group on Facebook if you have a Facebook account. I also co-admin a private group just for wives of husbands with GBM. Feel free to contact me using one of the options on the left side of the site, and I will help guide you to these groups if you are interested. Prayers for healing & the strength to fight this disease.

      Kelli

  12. My 33 yr old son-n-law was diagnosed with GBM 4 in Oct 2015. Had surgery Nov 2015, doctor removed 90%, underwent typical radiation/treamdor treatment, followed by 6 rounds of treamdor. Tumor was found to be growing in May 2016. Had second surgery 7/9/16, they removed 99.9% of new growth.. He will start a clinical trial within 2 months.

  13. I was recently diagnosed in March 2017 with glioblastoma grade 4 aggressive, had undergone chemo and radiology and am due to start my second lot of chemo in sept, I have not had a recent Mir done again I have to wait until October . I feel like I have been left in limbo so in desperation I am trying to fund a trip to USA for the dukes polio vaccine but the progress is slow I have set up a donation site on my webpage to help me fund the treatment.

  14. Hi

    I am a teacher from Our Lady of Lourdes high school in Guelph Canada.

    Below is a link to a music video we put together to raise awareness for brain cancer.  It was shot at the ten4ten fund raiser where we raised $300,000!

    Looking to share this video with as many people as possible to demonstrates what community can do. 

    Here is the tweet we put out. Please retweet my pinned tweet. It would mean so much to me.

    RAISING AWARENESS FOR BRAIN CANCER. New music vid SUNSHINE Nathan Finoro shaves head in memory of grand father’s brain cancer
    https://m.youtube.com/watch?v=_dLL63dR5tw

    Please follow me on Twitter @leonard_shea

    I would really appreciate a retweet.

    Thanks

  15. Hello
    I have a Glioblastoma foundation in honor of my husband Philip. We are having our annual fundraiser at the Cabrillo Art Center in Santa Barbara, Sept 11th2016.
    If anybody is interested to attend or to donate please get in touch with me.
    Heidi Lawler 805-443-7360
    Thank you and keep up the great work you are doing
    Heidi

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