Loss of adult child to brain cancer

Posted by holly56 @holly56, Tue, May 7 7:03am

I have posted a few months back, when my son, 27, was suddenly diagnosed with a primary brain tumor in left temporal lobe on December 12, 2018. After 3 brain surgeries and 6 weeks of brain and spine radiation, He spent 4 months, fighting like the warrior he is, battling what was a rare Glioblastoma and Embryonal Tumor (CNS) hybrid Tumor .. The tumor in his brain ended up a mix of Embryonal, which meant tumors spread throughout brain and in spinal cord via cerebral spinal fluid. April 10th, after all treatments to fight this monster cancer were exhausted, the tumors came back and my precious son passed in hospice on April 17. It has been unbearable, as those on this site know all too well. I know we all grieve for our losses, parents aren’t supposed to write the obituary and plan a service for their child, nor their siblings. Is there anyone that has experienced this type of brain tumor that leaves the brain, travels throughout the CNS and paralyzes a soldier of 9 years to not leave a hospital bed until Hospice. I am desperately looking for other people who experienced this type of cancer as it is rare and leaves me and my family completely at a loss as to cause. We are told it is due to cells splitting abnormally and more molecular and very rare and “extremely bad luck “. Our docs and medical team have been wonderful but so much unknown about this hybrid of tumor.
Sincerely,
Holly Derek’s mom

@holly56 My heart breaks for you, and the journey you and your family has been through. I hope someone reading your post can step up and share what they know of this cancer. I have no doubt your son's case may have helped some medical professionals to better understand this condition. You all are in my thoughts and prayers for support at this difficult time.
Ginger

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Hello @holly56 I am so very sad to read your post. I am sorry for your loss and wish there were some words that would provide comfort.

My wife had a different type of brain cancer, but I will never forget her neuro-oncology doctors saying on various occasions 'there is more we don't know about the human brain than we actually do know'. In my wife's case we, too, were told it was a rare cancer in women her age as well as from an unexplained cause.

Connect is a large community and I hope there are others who will be able to converse with you on this specific cancer.

Wishing you peace,
Scott

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@IndianaScott

Hello @holly56 I am so very sad to read your post. I am sorry for your loss and wish there were some words that would provide comfort.

My wife had a different type of brain cancer, but I will never forget her neuro-oncology doctors saying on various occasions 'there is more we don't know about the human brain than we actually do know'. In my wife's case we, too, were told it was a rare cancer in women her age as well as from an unexplained cause.

Connect is a large community and I hope there are others who will be able to converse with you on this specific cancer.

Wishing you peace,
Scott

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Thank you Scott and so sorry for your loss. Is there a group of families/spouses etc that lost their precious loved one that meet either by phone or annually? If not, maybe we should form one and meet invdifferent states each year? A place where everyone has felt the heartache and difficult journey we experienced and are left to carry on.

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Hi @holly56, Losing a child at any age turns our world upside down. It's not the right order of events and impossible to understand that young people have to suffer disease.

I'd like to bring @daniellemarie into this discussion as well. Danielle's daughter passed away a couple of months ago from a different rare brain tumor called Pleomorphic xanthoastrocytoma tumor (Pxa) I think she might appreciate knowing that she is not alone. Sometimes it can help to talk with others who have been there and to share things we can't even talk about with other family members.

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@holly56

Thank you Scott and so sorry for your loss. Is there a group of families/spouses etc that lost their precious loved one that meet either by phone or annually? If not, maybe we should form one and meet invdifferent states each year? A place where everyone has felt the heartache and difficult journey we experienced and are left to carry on.

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Good morning @holly56 Thank you for the kind words.

I imagine there are on-site groups that gather in various locations. For instance, the hospice program we used, even though my wife chose home hospice, offers a grief and loss support group here in my small town. I also know there are various groups for grief and loss throughout the Chicago area, but am not sure about other areas. I'd guess local churches might offer something too. Plus I discovered our local funeral home and hospital also knew of support groups in our area, too.

It was the isolation I was battling, which actually brought me to search out Connect. I particularly appreciated that it was 'on call' 24/7 for me!

While Connect is worldwide and the logistics of setting up in-person groups would be outside its design, perhaps your local hospital would be interested? In the meantime, remember we are here just a few keystrokes away to share, listen, or for venting!

How are you doing today?

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@holly56, I hope you have seen the posts by @kristap31 and @daniellemarie. They too both understand what it means to lose a child and can share their experiences in this discussion dedicate to losing a child.
Holly, how are you doing today?

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Hello my name is Danielle…. I lost my 10 years old daughter Danica 1-28-19 to PXA brain tumor/cancer. It’s been very hard to live and go through this pain 💔😭

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There is nothing to say that will take away this horrific pain. Except to say I lost my son in 2016 and this forum is a good place to find support. Do not hold in your feelings please. If you have a counselor, then consider talking to someone personally. As I write this. I am at my grief therapists office. Blessings.

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Hello @daniellemarie, I agree with what was posted by @georgette12, in that there is little that we can do or say that can possibly relieve you from this terrible pain of losing a child. The time you spent with her after her diagnosis up until her death had to be very draining and emotional to your mind, spirit as well as your body.

I would encourage you to share your feelings here, but also to find a grief support group where you can talk face-to-face with others who have experienced similar losses. I would also encourage you to write. Keep a journal or just write short notes each day to the daughter you lost, date these notes and keep them in a box or drawer so that in the future you can look back on them.

You need to take care of yourself physically. As you have been through a long process with your daughter's illness and death, you need to practice a lot of self-care right now. Eat well, take walks or do other exercises that will help you relax. Practice mindfulness.

Counseling, of course, is a great way to help you through the grief process. Losing a child is the most difficult loss possible so be good to yourself.

Will you keep in touch?

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Dear @daniellemarie,
I am so sorry and echo @georgette12 and @hopeful33250. I have not gone through this, but a close family member of mine has.
She had a beloved pet for many years and that helped her tremendously.
Her church family offers a grief and loss group; she has participated and now leads it (MANY years after her losses).
Also, some of her extended family members have been extremely supportive.
Again, I am so sorry! Children should outlive their parents…

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@daniellemarie

Hello my name is Danielle…. I lost my 10 years old daughter Danica 1-28-19 to PXA brain tumor/cancer. It’s been very hard to live and go through this pain 💔😭

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Hi Danielle. It is the most painful thing imaginable. I am so sorry for your loss of your precious daughter. I watched my son as we cut the umbilical cord and I watched as he took his last breath in hospice at age 28 on April 17th, 2019. Derek was in 82nd Airborne, served our country in the Army for 9 years, got out and was enrolled to start his music career on January 7th. But everything went crashing down on December 12, 2018. Suddenly a massive tumor in his brain. After 3 brain surgeries, a feeding tube and 6 weeks of grueling radiation, the cancer throughout his brain and spine were gone. Only to all come back in weeks and took him. He never left the hospital or walked again, he went into hospice on April 10th. I have found some comfort with grief counselors and much support from Compassionate Friends group, all parents who lost their precious child. They are a national organization with chapters in many states. I am learning that I have to somehow carry this grief all of my days of my life, it is hell and I am so sorry for all of us and our precious loved ones who had to endure this monster called cancer. 💔💔🙏🏻🙏🏻

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Losing a child to cancer is never something we can plan for, likewise a sudden demise due to accident. Sometimes, honoring that child's life in some way helps with the grief, and gives their life meaning. Perhaps an ongoing program at their school regarding something they liked to do. An archeology club? A dance group? Perhaps a gathering in town planting trees/landscape, or poetry readings? It might assist in easing the hollowness.
Ginger

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Thank you Ginger. Those are good ideas. I am looking to do a music scholarship in Derek’s memory when I am stronger and can concentrate better. 💔💔🎶🎶

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@holly56

Thank you Ginger. Those are good ideas. I am looking to do a music scholarship in Derek’s memory when I am stronger and can concentrate better. 💔💔🎶🎶

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@holly56 What a wonderful idea! Music can be so creative and healing, for the listener and player, both. What was Derek's instrument of choice, or genre of music?
Ginger

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@gingerw

@holly56 What a wonderful idea! Music can be so creative and healing, for the listener and player, both. What was Derek's instrument of choice, or genre of music?
Ginger

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Hi Ginger. Derek made music through electronics and techno. He has a few songs on SoundCloud and iTunes, his travels to many countries inspired him. You can find him under D-Rex💔🙏🏻

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