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picked up David's puppy today

cindysuetoyou's picture
cindysuetoyou
Posts: 508
Joined: Dec 2009

Just wanted to let you all know that we finally got our hands on David's puppy and brought him home today. He's a real cutie and we all love him already. David is so happy to have him. He texted me last night and said that he was going to bed early because he wanted today to hurry up and come. He said he felt like he used to feel on Christmas Eve when he was a kid...because he was so excited about getting his puppy. it's been a long time since David has shown any enthusiasm about anything......it made me very happy!

I am so glad that everything worked out and David was able to get his puppy. I just have this little cloud hanging over me that i can't dispel. i can't put my finger on it, but I feel like David is "off". I don't know how to explain it. He's just not himself. He doesn't talk very much.... he basically responds to our questions. He doesn't initiate anything. He does some weird repetitive things....like tapping with an envelope on the counter, flicking his iPhone menu over and over, making circling motions with a quarter on the counter....I don't know why. I don't know if it's a big deal. I asked him what he was doing...he smiled and said that he was playing with a quarter. I don't know if I am being ultra hypersensitive and I'm scrutinizing everything he does under a microscope, looking for any slight thing and then making a big fat deal out of it. I was talking to Christy on the drive home....she's bothered and concerned about David too. I don't know if it's from the tumor(s) encroaching on the part of his brain that controls his personality, or if it's from the effects of the chemo, or if I am overreacting. It's not a big deal and he could live and function just fine....but I wonder if it's the beginning of a progression in a direction that we do not want to go. My husband says I can create things to worry about (he wasn't taking about this, though...he was talking about my worrying about David locking himself out of his apartment when he takes the puppy out to go potty in the middle of the night). Maybe I am just creating more to worry about...I just don't know....

David used to say that our Sunday family dinners were the highlight of his entire week. Now he doesn't want to come any more. I don't know why. He said he doesn't want to come this week because he wants to rest up for next week's hospital stay and treatment. I just feel like he's changing and not wanting to be around people, even his family that he loves. He seems to wear out so fast...but that's probably from the chemo and from his platelets and WBC counts being low.

On the plus side....David said he's feeling pretty good. No headache, no achey bones, no nausea. Just tired. It's been a long, long time since he's said that he feels pretty good. I need to think about that more, and be grateful that he feels good.

I guess I will just keep my eye on David and see how things go. There's not much I can do about it anyway.....

I will post some pics of David and his little puppy Jackson in my expressions section.

Love and blessings,
Cindy

I_Promise's picture
I_Promise
Posts: 210
Joined: Aug 2011

Dear Cindy,

I can feel your raw pain through your last emails. Thinking that David is "off" is terrifying. I don't want David to change, like I don't want my sister to change either.

Hopefully it is just an effect of the chemotherapy and with time it will go away. Maybe it means that the chemo and the BBB are working. Please keep posting. You are not alone.

Have you though of adding DCA to your son's regimen? It is usually used in conjunction with chemo (but not all, some are incompatible). It was developed by the University of Alberta in Canada and it is very cheap (because the compound was discovered at the turn of the 20th century and so pharmaceutical company cannot patent it). I am seriously considering to add it to my sister regimen for the following reasons 1) it has been known to halt the progress of gliomas 2) there are virtually no side effect. (at very high dose, some neuropathy was found but can be reversible with vitamin b1)

You can find more info here :

http://www.medicorcancer.com/news.html

When I spoke to Duke about it they were very open to the idea and very excited about the potential of DCA. They were more than willing to work with the clinic Medicor that dispense DCA.

My thinking is that we have to approach the glioma from multiple angles if we want to be successful at beating those dismal odds.

Love,

Julia

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