Monday 7 September 2015

MJ's in peace

Hi all,

As of Sept 4, we decided to stop all treatments for Minjung. The scan showed that her tumor has grown substantially over the last few weeks, which explains various symptoms that developed recently. We were considering whether or not to pursue chemo+cocktail treatment immediately, but all of the oncologists we met told us that with her physical condition, she won't be able to tolerate a single round of temodar and that it will only increase her pain. The doctor told us that we could put her to sleep until she passes, so she wouldn't feel the pain and suffering at least.  Her family decided that it is the best they can do for MJ at this point and agreed to his offer... and I respect their decision.

Here are some of the things that I would do differently if I could go back in time. Hopefully, it will help anyone who is in similar situation in devising their treatment plan. Her tumor is located at brain stem, which originally made it inoperable. Our initial plan was to implant shunt and start with RT+chemo protocol as soon as possible. However, we had to wait 3 months because the bleeding at her tumor wouldn't stop, which made shunt placement impossible. I kept thinking over and over that if we could start chemo and radiation right away without considering shunt option, we could have had a better chance. During that 3 month period, her condition became worse and her tumor grew... at that point, we literally begged our neurosurgeon to do the surgery because normally, neurosurgeons choses not to operate in situations like this.

Also, if your situation prevents you from doing RT+chemo simultaneously, may be doing radiation first isn't the best move, especially when your best bet is the cocktail approach. Radiation did not stop her tumor at all; instead, it grew. And by the time radiation was over, her symptoms became worse and we did not even have a shot at battling this evil disease with cocktail approach.

I still firmly believe that cocktail approach can produce miracle. Furthermore, GBM patients should try everything to increase their chance of beating this disease at every aspect of life; maintaining positive attitude, exercise, eating healthy food, laughter, releasing suppressed emotions, etc.

I also want to thank Stephen for creating this discussion venue and for helping us out with invaluable advice and information.

Please do not give up your hope.

My prayers are with all of you and your loved ones.

Sincerely,
Hyunsun













9 comments:

  1. I am very sorry for your fiancee Minjung. God rest her soul.
    Sincere condolences,
    Melinda :(

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  2. Hyunsun

    My deepest sympathies and condolences.

    Mike

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  3. Hyunsun - What an awesome advocate Minjung had! We were all holding hope for the two of you. I am so sorry for your loss and for the families involved. I am holding all of you close in my heart.

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  4. Hyunsun,

    I am so sorry that Minjung had this terrible disease, It is comforting to know that she was cared for and very much loved.

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  5. Hyunsun -

    My sincere condolences to you and your family. Rest in peace Minjung.

    Annie

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  6. God be with u and heal your pain..and thank you for valuable advice

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  7. I'm so deeply sorry for the pain of the loss of Minjung. May the love that was born and shown from those around her continue to spread; so this deep loss is transformed into a light that gives hope and life to everyone who was touched by her story.

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  8. So sorry to hear this news. My prayers and love are with you and your family.

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  9. Dear Hyunsun,
    I am deeply sorry for your loss.
    My sincere condolences for you and your family. May Minjung rest in peace.<3
    X Lycka

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