March 11, 2006

Where we're at

It's been longer than intended for this post, but we've been scrambling around, trying to get our feet back underneath us. Our 2nd meeting with Dr. Foreman on Tuesday was even more dismal than the first. He had a conversation with Dr. Gore (she’s in charge of the clinical trial we were considering) and they both agreed that Ben was not a good candidate for the trial. Dr. Foreman does not feel that Ben will be able to meet the minimum life expectancy for the trial. He instead strongly encouraged us to begin hospice care, and to live life as full as possible with Ben in his remaining weeks. This was a difficult and devastating conversation for all of us, even Dr. Foreman.

Ben is actually doing quite well, which makes all of this so surreal. His balance appears to be what’s affected the most, but he still continues to skip and climb all over the house. The right side of his body is weaker than the left and he has started to use his left hand more. His speech has become slightly slurred, so he’s had to slow it down a little to be understood. All of this causes him frustration since he must slow everything down, and no 6 year old wants to be slow at anything!

We have decided to begin hospice care only with the understanding that we can continue to treat Ben with homeopathies, as well as, a final treatment option that we are currently waiting for more information on. It’s a shot in the dark, but we’ll take anything we can get. We’re not ready to throw in the towel just yet!

On a positive note, as many of you may or may not know, Ben was not able to feed the elephants on his Make-A-Wish trip (if you don’t remember, this was his actual wish, to feed an elephant). Thanks to Dean’s brother Pat and his associate Fofi, Ben will finally get his wish this Sunday at the Denver Zoo. We’ll take lots of pictures to be posted here later.

We are thankful for all of the tremendous support and prayers from everyone. It’s the only thing that helps us through each day. We’ll post things that you can do to help as we get more organized this next week.

Posted by Melinda at 12:17:27 | Permanent Link | Comments (8) |
Comments
1 - Wish we could be there to share in the day at the zoo. We miss all of you very much. Our love and prayers are with you. Rich and Dot
PS - Tell Ben to watch out for elephant poop! That might be hard to clean off his shoes. (Comment this)

Written by: Rich & Dot at 2006/03/11 - 13:13:24
2 - I have checked on Ben every week for the last two to three months. My 7 year old daughter, Alicia, also has a DIPG. She was diagnosed in Aug. of 2005. I am so sad to hear that Ben is not doing well. Please know Ben and your whole family are in our prayers. You may already be aware, but I thought I'd mention it anyway, Duke is beginning a study where they place a catheter directly into the tumor then inject chemo or immuneotherapy. I spoke with Dr. George recently about this. He is a very nice doctor who takes the time to answer all your questions. We are considering this if Alicia has a reoccurance. Does Ben take Ruta Grav 6c & Calc Phos 3x ? Alicia is on it and we have heard some amazing stories about it. If you have any questions or want more information please contact me.... my email address is ESTYS@cfl.rr.com and my home number is (321) 633-6002. Please let me know if there is anything I can do to help.
With Love, Hope & Prayers,
Christine Martin
mother of Alicia
www.aliciahopefund.com (Comment this)

Written by: Christine Martin at 2006/03/11 - 18:12:19
3 - Our family thoughts and prayers are with your family. We pray to god to be on your side and grant you the gift of hope.
Nawfal & Linda
London,UK (Comment this)

Written by: Nawfal & Linda at 2006/03/12 - 05:35:46
4 - I love elephants. They are currently Rayn's favorite animal, but that is subject to frequent and rapid change. Have a blast feeding the elephants. Love, love, love, Andrea (Comment this)

Written by: Andrea Oakley at 2006/03/12 - 13:16:23
5 - We can still hope that they are wrong. And hey, not everyone remembers that we should all live each day like it might be our last. Making the most of every moment will be something to treasure forever. I just hope that you can all keep thinking about filling your time with love and fun and skip the worry. It can't fix anything and it will only be energy taken away from enjoying every moment. I know that I would have a really hard time sticking to this ideal, but it's the only advice that helped with my grandfather's cancer. Not even close to the same kind of painful you are all facing, but I hope it helps. Never keep fighting, and always make the most of living.

So very much love,
Amber (Comment this)

Written by: Amber, Jim and Jack at 2006/03/12 - 19:12:19
6 - Sorry, that was never STOP fighting! (Comment this)

Written by: Amber, Jim and Jack at 2006/03/12 - 19:13:46
7 - I am so very, very, very sad to read this current information.
I only know you all from a couple of conversations and ready your blog.
I have been closely involved in similar situations with other children and families. It is not ever easy and when I read this about Ben, it puts my heart back to each of those experiences. HARD!
Do what you hearts tell you to do and what your beliefs are.
If you would like to talk to two mothers who have lost their children, please call me so I can give you their phone numbers. THEY completely understand.
PLEASE, PLEASE know that we all want to be their supporting you in any way you would like. remember that those middle of the night moments, I am always available. I will not give advise. There is no to give. BUT my heart, ears and arms are open always. It does one good sometimes to just have someone else in the room with you, and perhaps being totally silent. There is some comfort in companionship.
Again, please let us know what we can help with! Food, mowing lawns, shopping, babysitting, whatever.
With my wish for peace and love during this time.
Val Baker
B.R.A.V.E.
Brain tumor Resourve And Vital Encouragement (Comment this)

Written by: Valerie Baker from B.R.A.V.E. brain tumor support group at 2006/03/14 - 13:30:00
8 - DearDean and Melinda,

I am so very sorry about Ben. My heart truely aches for you guys. Paula has kept me informed of all the goings on over the past serveral months. Please know that you've been in not only my prayers but I have a few prayer groups that have also been praying for all of you.
I can honestly say, I am at a lost for words. Just know that you've been in my heart, thoughts and prayers.

I know this is a difficult time for everyone. I know people say this during times like these, but know I truley mean it. If there is ANYTHING you need, anything I can help out with I am only a phone call away. Even if it's something small, I am there.

I also haven't congradulated you with the new baby. I shall wait his or her arrival with much love and excitement.

Please take care of yourselves! You are very much loved by so many.
Tammy Brenner
303-338-8182 (Comment this)

Written by: Tammy Brenner at 2006/03/28 - 09:51:36
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