who needs help?

staceycheek
staceycheek Member Posts: 11
in Brain Cancer #1
Hello my name is Kristy and Me and my 2 boys ages 12 and 6 live in Missouri. We havebeen through a roller coaster battle of my husbands brain cancer. November 13th 2009 my husband was diagnosed with a brain tumor in his cerebellum. My husband had his tumor removed in St.Louis which pathology showed it was a pilocytic astrocytoma. 6 months later his headaches came back and MRI revealed this tumor was back. He had surgery again this time pathology showed it a grade 2 astrocytoma. The doctors in St.Louis wanted us to see an oncologist so we did. He had full brain radiation. The tumor came back again so they wanted to set up another surgery. At this point we wanted to change doctors, we then decided to see the doctors at Duke University in North Carolina. They were great! We went there every 8 weeks because they just wanted to watch the tumor since it hasnt grown in awhile. In September of 2011 the tumor grew so we did schedule another surgery there with Dr.Friedman. He was great but he didnt get all of the tumor. At this time it was a grade 3. We then went home and my husband was scheduled for gamma knife. His tumor started to shrink some and he then got on chemotherapy too. He was doing good for a few months but then he started getting facial numbness. MRI was scheduled and he had a new growth in the pons of the brainstem. About a month later he lost his ability to drive walk swallow just about everything. We went back to Duke with my husband in a wheel chair to see what they would do. The doctors gave him a big dose of the carboplatin cpt-11 and avastin. We came home and about 4 days later on March.6th which was our youngest boys birthday his dad had to be rushed by ambulance to the hospital here in St.Louis. They said he had a heart attack,then sepsis, then a stroke, RSV and more. We spent 44 days in the hospital and he was on a ventilator the whole time. He died April 19th 2012.

His name was Michael and we was 32 years old. He was the most amazing husband and father in the world. We adored him soo much! I would of traded places with him in a heartbeat if I could because he is wonderful and we have 2 boys which they probably need him more since they all do boy stuff.

My kids and I would love to help anyone we can with brain tumors. We had my moms and sisters help during all of this and I dont know what we would of done without them. I know there are alot of people that dont have anyone and me and my kids would like to be that someone. I have been researching brain tumors for almost 3 years so if anyone has any questions or wants me to research for them I will. I live in missouri so If anyone is around here I will give rides I dont know just whatever anyone needs. My husband would be so proud of us because he loves to help everyone. Thank you everyone! My email address is thomaskristy61@yahoo.com or you can call me at 636-209-8533.

Comments

  • staceycheek
    staceycheek Member Posts: 11
    #2
    thank you

    thank you
  • staceycheek
    staceycheek Member Posts: 11
    #3
    thank you

    thank you
  • leprechaun2
    leprechaun2 Member Posts: 79
    #4
    staceycheek said:

    thank you

    thank you

    What a testimony!
    Hello. Your battle sounds like it went too fast. I am sorry for the loss you have all suffered. Your desire to help others, along with your boys, is a beautiful testimony to the love you each had for your husband.

    We are in NY, too far for your offer but I do thank you for the kindness you wish to extend. Please give your thoughtful sons a hug also.

    Please keep in touch and let us know how you are all doing.

    Leprechaun
  • staceycheek
    staceycheek Member Posts: 11
    #5
    leprechaun2 said:

    What a testimony!
    Hello. Your battle sounds like it went too fast. I am sorry for the loss you have all suffered. Your desire to help others, along with your boys, is a beautiful testimony to the love you each had for your husband.

    We are in NY, too far for your offer but I do thank you for the kindness you wish to extend. Please give your thoughtful sons a hug also.

    Please keep in touch and let us know how you are all doing.

    Leprechaun

    thank you soo much! It's
    thank you soo much! It's been amazingly hard and all I want to do is keep helping as much as I can. New York is not too far just let me know what you need or if you know if anyone else needs some help. I can help research things too.
  • staceycheek
    staceycheek Member Posts: 11
    #6
    leprechaun2 said:

    What a testimony!
    Hello. Your battle sounds like it went too fast. I am sorry for the loss you have all suffered. Your desire to help others, along with your boys, is a beautiful testimony to the love you each had for your husband.

    We are in NY, too far for your offer but I do thank you for the kindness you wish to extend. Please give your thoughtful sons a hug also.

    Please keep in touch and let us know how you are all doing.

    Leprechaun

    thank you soo much! It's
    thank you soo much! It's been amazingly hard and all I want to do is keep helping as much as I can. New York is not too far just let me know what you need or if you know if anyone else needs some help. I can help research things too.
  • staceycheek
    staceycheek Member Posts: 11
    #7
    leprechaun2 said:

    What a testimony!
    Hello. Your battle sounds like it went too fast. I am sorry for the loss you have all suffered. Your desire to help others, along with your boys, is a beautiful testimony to the love you each had for your husband.

    We are in NY, too far for your offer but I do thank you for the kindness you wish to extend. Please give your thoughtful sons a hug also.

    Please keep in touch and let us know how you are all doing.

    Leprechaun

    thank you soo much! It's
    thank you soo much! It's been amazingly hard and all I want to do is keep helping as much as I can. New York is not too far just let me know what you need or if you know if anyone else needs some help. I can help research things too.
  • staceycheek
    staceycheek Member Posts: 11
    #8
    staceycheek said:

    thank you soo much! It's
    thank you soo much! It's been amazingly hard and all I want to do is keep helping as much as I can. New York is not too far just let me know what you need or if you know if anyone else needs some help. I can help research things too.

    just wanted to let everyone
    just wanted to let everyone know that Duke hospital in North Carolina is starting a brain tumor trial that sounds promising. They have something that makes your healthy cells in your brain regenerate to where if they remove a tumor new good cells could still grow there.
  • michral
    michral Member Posts: 14
    #9
    staceycheek said:

    just wanted to let everyone
    just wanted to let everyone know that Duke hospital in North Carolina is starting a brain tumor trial that sounds promising. They have something that makes your healthy cells in your brain regenerate to where if they remove a tumor new good cells could still grow there.

    Thank you for sharing your story
    I really appreciated your offer to help. Hugs to you and your sons. My best friend, love of my life was diagnosed with glioblastoma on 03/10/2012. It came out of the clear blue. He was at work on a Monday and had a seizure in his work vehicle. He was found down by a coworker and resuscitated - he lost his airway. His coworker saved him and the ambulance brought him to our local hospital. A policeman arrived at my door to tell me that my husband had been taken to the hospital by ambulance. My high-school-age son was home from school, so we rushed to the hospital. When we got there he seemed fine, but after about 1/2 an hour, he went on to have a long grand mal seizure. We ended up transferring care to a specialist (neurosurgeon)at Brigham and Women's Hospital in Boston. She did a craniotomy and it took 10 days for the biopsy results - glioblastoma multiforme. He has received radiation therapy and is on his fourth round of chemotherapy - temodar.

    He is fatigued, weak, and spends most time in bed. He seems to have lost the ability to fight. His regular medications, as well as chemotherapy have really wiped him out. I'm hoping the meds are causing the fatigue, confusion, and weakness. I have requested a second opinion and we are scheduled to see an oncologist at Dana-Farber Cancer Institute a week from today. What a debilitating disease. I'm still hopeful and praying for a miracle. We have 3 children, Justin age 16, Bryce (boy) aged 13, and a daughter Marianne 11 - they are all very positive and believe we will get a miracle. Stacey any words of wisdom, help would be greatly appreciated.

    Thanks again for sharing your loss, I am so very sorry.
    Michelle
  • phillip1950
    phillip1950 Member Posts: 4
    #10
    glioblastoma leve 4 brain tumor
    Hello, I am wondering if you can call me. My son-in-law is 37 yrs.old and was diagnosed with the brain tumor level 4. He has 3 children 6 months old, 23 months old and a 10 year old. We are all devastated and shocked at this time. they removed the tumor in June,2012, then followed by 6 weeks of radiation and chemo. He was to start up again with a case study on Sept 18th, 2012 but that is not going to happen because today Sept 13th he had his MRI done only to find out that another tumor had grown next to the tumor that he had previously in which they were able to take out the entire tumor. This one however, is too deep and the doctor said that he would be able to take this one out because he will lose his speech. We are now waiting for the doctors to call either tonight or tomorrow as to what procedures they are going to come up with next. Needless to say, We are devastated and shocked at the present time. Our lives have turned for the worst, not to mention what he is going through. My phone number is 586-246-8961. My name is Phil,
  • staceycheek
    staceycheek Member Posts: 11
    #11
    michral said:

    Thank you for sharing your story
    I really appreciated your offer to help. Hugs to you and your sons. My best friend, love of my life was diagnosed with glioblastoma on 03/10/2012. It came out of the clear blue. He was at work on a Monday and had a seizure in his work vehicle. He was found down by a coworker and resuscitated - he lost his airway. His coworker saved him and the ambulance brought him to our local hospital. A policeman arrived at my door to tell me that my husband had been taken to the hospital by ambulance. My high-school-age son was home from school, so we rushed to the hospital. When we got there he seemed fine, but after about 1/2 an hour, he went on to have a long grand mal seizure. We ended up transferring care to a specialist (neurosurgeon)at Brigham and Women's Hospital in Boston. She did a craniotomy and it took 10 days for the biopsy results - glioblastoma multiforme. He has received radiation therapy and is on his fourth round of chemotherapy - temodar.

    He is fatigued, weak, and spends most time in bed. He seems to have lost the ability to fight. His regular medications, as well as chemotherapy have really wiped him out. I'm hoping the meds are causing the fatigue, confusion, and weakness. I have requested a second opinion and we are scheduled to see an oncologist at Dana-Farber Cancer Institute a week from today. What a debilitating disease. I'm still hopeful and praying for a miracle. We have 3 children, Justin age 16, Bryce (boy) aged 13, and a daughter Marianne 11 - they are all very positive and believe we will get a miracle. Stacey any words of wisdom, help would be greatly appreciated.

    Thanks again for sharing your loss, I am so very sorry.
    Michelle

    Hello if you have any free
    Hello if you have any free time right now(I know thats hard to come by) but i
    f by chance you do please call me and we can talk on the phone and hopefully I can help some or alot would be nice..636-285-0443 my name is Kristy
  • staceycheek
    staceycheek Member Posts: 11
    #12
    michral said:

    Thank you for sharing your story
    I really appreciated your offer to help. Hugs to you and your sons. My best friend, love of my life was diagnosed with glioblastoma on 03/10/2012. It came out of the clear blue. He was at work on a Monday and had a seizure in his work vehicle. He was found down by a coworker and resuscitated - he lost his airway. His coworker saved him and the ambulance brought him to our local hospital. A policeman arrived at my door to tell me that my husband had been taken to the hospital by ambulance. My high-school-age son was home from school, so we rushed to the hospital. When we got there he seemed fine, but after about 1/2 an hour, he went on to have a long grand mal seizure. We ended up transferring care to a specialist (neurosurgeon)at Brigham and Women's Hospital in Boston. She did a craniotomy and it took 10 days for the biopsy results - glioblastoma multiforme. He has received radiation therapy and is on his fourth round of chemotherapy - temodar.

    He is fatigued, weak, and spends most time in bed. He seems to have lost the ability to fight. His regular medications, as well as chemotherapy have really wiped him out. I'm hoping the meds are causing the fatigue, confusion, and weakness. I have requested a second opinion and we are scheduled to see an oncologist at Dana-Farber Cancer Institute a week from today. What a debilitating disease. I'm still hopeful and praying for a miracle. We have 3 children, Justin age 16, Bryce (boy) aged 13, and a daughter Marianne 11 - they are all very positive and believe we will get a miracle. Stacey any words of wisdom, help would be greatly appreciated.

    Thanks again for sharing your loss, I am so very sorry.
    Michelle

    Hello if you have any free
    Hello if you have any free time right now(I know thats hard to come by) but i
    f by chance you do please call me and we can talk on the phone and hopefully I can help some or alot would be nice..636-285-0443 my name is Kristy
  • staceycheek
    staceycheek Member Posts: 11
    #13
    phillip1950 said:

    glioblastoma leve 4 brain tumor
    Hello, I am wondering if you can call me. My son-in-law is 37 yrs.old and was diagnosed with the brain tumor level 4. He has 3 children 6 months old, 23 months old and a 10 year old. We are all devastated and shocked at this time. they removed the tumor in June,2012, then followed by 6 weeks of radiation and chemo. He was to start up again with a case study on Sept 18th, 2012 but that is not going to happen because today Sept 13th he had his MRI done only to find out that another tumor had grown next to the tumor that he had previously in which they were able to take out the entire tumor. This one however, is too deep and the doctor said that he would be able to take this one out because he will lose his speech. We are now waiting for the doctors to call either tonight or tomorrow as to what procedures they are going to come up with next. Needless to say, We are devastated and shocked at the present time. Our lives have turned for the worst, not to mention what he is going through. My phone number is 586-246-8961. My name is Phil,

    HI Phil Maria was asking me
    HI Phil Maria was asking me about a vaccine and Duke called me this morning and I asked them about it and they told me that most of the vaccines are now only given if they havent had avastin.. She did say that Dr.Friedman(Allan) could look at his MRI and let him know what he thinks he could do. I do believe that he is going to be fine. How is he feeling today was there any different news? Please let me know if there is anything I can do. Oh please let Maria know that Duke said to fill out a new patient form online and make an appointment with Dr.Friedman if thats who you all want to go with. Duke does give a set of airline tickets for free for your next visit.That helped us alot..Stay strong..
  • ravirajagopalan
    ravirajagopalan Member Posts: 7
    #14
    staceycheek said:

    HI Phil Maria was asking me
    HI Phil Maria was asking me about a vaccine and Duke called me this morning and I asked them about it and they told me that most of the vaccines are now only given if they havent had avastin.. She did say that Dr.Friedman(Allan) could look at his MRI and let him know what he thinks he could do. I do believe that he is going to be fine. How is he feeling today was there any different news? Please let me know if there is anything I can do. Oh please let Maria know that Duke said to fill out a new patient form online and make an appointment with Dr.Friedman if thats who you all want to go with. Duke does give a set of airline tickets for free for your next visit.That helped us alot..Stay strong..

    Thanks
    Hi Stacey, you are amazing. I cannot imagine how you offer to help when you are dealing with so much yourself.

    My wife was diagnosed with GBM last September. She underwent the standard course and was fine through summer. She had a recurrence this October and just had her second surgery. We are hoping for the best.

    Good luck to you,

    Regards,
    Ravi
  • fmkadem
    fmkadem Member Posts: 3
    #15
    Thank you, I love you
    Thank you so much for being strong and for doing this for your husband. He must be very proud. I cried a lot reading your story but what make me a little bit happy is people are still here to help each other even with a word, that can be big sometimes.
    My lovely father, he was diagnostic with GBM IV early July 2012, he had only biopsy in august and had 6 1/2 weeks of radio+chemo therapy. Now he is back on a second chemotherapy treatment but he is feeling very weak (right hand and leg barely move, and can not read or speak in a proper way, he need assistance for basic stuffs). What really kills me now is whenever I want to speak with him he always say: sorry I can't speak, sorry I can't do anything --> he is being sorry because he is sick and I can not do anything about it !!!!
    I know this is a deadly illness but I feel that weakness is killing my father, he used to be always so strong so wise and so happy (he used to make us laugh all the time) and now I see him lost in a world that I can't understand, and I see in his eyes that he wants to give up but at the same time he is accepting this for us.
    If I will have a will it will be: either bring dad as he was or take him, I can't stand the fact that my father feels weak and he is being sorry about that and I can't explain to him that we love him and it is ok, he is strong he has a character and this is what kills him.
    I sometimes try to imagine what he feels but I can't, I feel that he is lost in a world tat no body can understand. He asked me many times what is happening to him ? why he can not read any more, why he can not speak properly, why he is feeling weak, and I LIED, I couldn't tell him the truth, I know that he knows but I never was able to tell him the truth, I hate GBM and I hate whatever created his GBM.
    I hope the best for everybody but I hope that we live proud and healthy or we die

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