Hey everyone, just checking in to let you know that I can feel all your positive energy and prayers these days, thank you :-) Today I'm really excited to have Kaveh and his mom come visit me...I finally get to see him after he dodged me for the 3 months I was in Germany...lol.
LOVE
Friday, July 30, 2010
Thursday, July 22, 2010
Matt Is My Hero
Hi Team Amir! YES it's me the guy who hasn't posted for a little while...The past few days I've been at the hospital and in the process of calibrating my current Mr.c treatment plan...
Today I had a liver biopsy for genetic testing with new Chemo options and although the last Chemotherapy helped stabilize me, it didn't shrink (nor grow) the tumors - so now just like a boot-strapped startup business I have to go into the boardroom and meet with my partners to come up with a new strategy.
The first strategy change happened last week when I retired my old Oncologist Dr B1 and found a new Oncologist - Dr. B 2 (now ranked as Dr. B 1)...
Dr. B 1 is a very well known Oncologist with AWESOME bed-side manners...and that goes a lllllooonnnng way when you're sailing in uncharted waters.
For the next few weeks Dr. B 1 has put me on a pill form of Chemo so that I have a constant therapy in my blood stream to help me heal, instead of a shock every 2 weeks like before.
All these changes are of course very new to me and sometimes very very scary, but you know what - I have a little secret for success that I'd like to share with you...the secret is my little nephew Matt who has been healing himself from cancer for the past 3 years...did I mention he's 12 years old?
Matt is one of my greatest inspirations while going through treatment and whenever I feel lost or low it helps to remind myself that Matt has gone through things none of us can imagine at his age and, if he can do it, well then I can do it too! This is why Matt is my hero.
Below is a post from Matt's journal that I want to share with all of you. Please remember that life is cyclical and by helping one person you will also be helped in magical ways.
LOVE
---
We expect to hear all about your memorable stories that were shared over dinner. :)
Matthew is in recovery and not awake yet. We met with the both his oncologist, Matt Hansen as well as the nuerologist, Bruce Cherney. The pathology came back and confirmed it was tumor in the brain, same damn ewing's bastard as the others. We will meet with the Brain cancer team tomorrow to discuss what options are available to us now and of course we will be up all night researching on our own. Richelle and I are considering treatment in Germany where they use DMSO & Cesium Chloride as the treating agent. Ronald Reagan went there for cancer treatement as well as Elizabeth Taylor. The stem cell transplant is also still on the menu.
We had SUCH a wonderful start to the day and even though the middle was hard it's going to be a nice finish because we will go in and be with Matt here in a little while and he will be so happy this part is over. We know that there are many battles still yet to be decided and fought but if we have learned anything it's that there will also be precious moments for each and everyone of us along the way. We will battle the hard ones together and we will laugh & love during the close ones.
Live in this moment right now. Be present and aware of the people around you, you never know what tomorrow will bring.
:-)
Thank you all so much for your kind loving support, all the visitors, Matthew really appreciates it all. Please note he loves loves loves when me or mom sit and read your posts from the guestbook. It makes him feel good and no alone knowing there are so many concerned loving people cheering for him and so do we. Today he didn't want me to read the posts to him.... he was feeling pretty low @ that particular time... BUT THEN........
Amir???!!! ( His Unlce and hero also battleing cancer in San Diego ) ....... I told him "Amir left you a message, and he said READ IT READ IT" He smiled and cried after that and said "I love him". I asked if he wanted me to read anymore and he then wanted to hear them all. Diane? Marcie? Whitwells? Mithra? All of you!! thank you so so much for bringing the smile to our beautiful sons face by your kind and loving words. ---
Today I had a liver biopsy for genetic testing with new Chemo options and although the last Chemotherapy helped stabilize me, it didn't shrink (nor grow) the tumors - so now just like a boot-strapped startup business I have to go into the boardroom and meet with my partners to come up with a new strategy.
The first strategy change happened last week when I retired my old Oncologist Dr B1 and found a new Oncologist - Dr. B 2 (now ranked as Dr. B 1)...
Dr. B 1 is a very well known Oncologist with AWESOME bed-side manners...and that goes a lllllooonnnng way when you're sailing in uncharted waters.
For the next few weeks Dr. B 1 has put me on a pill form of Chemo so that I have a constant therapy in my blood stream to help me heal, instead of a shock every 2 weeks like before.
All these changes are of course very new to me and sometimes very very scary, but you know what - I have a little secret for success that I'd like to share with you...the secret is my little nephew Matt who has been healing himself from cancer for the past 3 years...did I mention he's 12 years old?
Matt is one of my greatest inspirations while going through treatment and whenever I feel lost or low it helps to remind myself that Matt has gone through things none of us can imagine at his age and, if he can do it, well then I can do it too! This is why Matt is my hero.
Below is a post from Matt's journal that I want to share with all of you. Please remember that life is cyclical and by helping one person you will also be helped in magical ways.
LOVE
---
We expect to hear all about your memorable stories that were shared over dinner. :)
Matthew is in recovery and not awake yet. We met with the both his oncologist, Matt Hansen as well as the nuerologist, Bruce Cherney. The pathology came back and confirmed it was tumor in the brain, same damn ewing's bastard as the others. We will meet with the Brain cancer team tomorrow to discuss what options are available to us now and of course we will be up all night researching on our own. Richelle and I are considering treatment in Germany where they use DMSO & Cesium Chloride as the treating agent. Ronald Reagan went there for cancer treatement as well as Elizabeth Taylor. The stem cell transplant is also still on the menu.
We had SUCH a wonderful start to the day and even though the middle was hard it's going to be a nice finish because we will go in and be with Matt here in a little while and he will be so happy this part is over. We know that there are many battles still yet to be decided and fought but if we have learned anything it's that there will also be precious moments for each and everyone of us along the way. We will battle the hard ones together and we will laugh & love during the close ones.
Live in this moment right now. Be present and aware of the people around you, you never know what tomorrow will bring.
:-)
Thank you all so much for your kind loving support, all the visitors, Matthew really appreciates it all. Please note he loves loves loves when me or mom sit and read your posts from the guestbook. It makes him feel good and no alone knowing there are so many concerned loving people cheering for him and so do we. Today he didn't want me to read the posts to him.... he was feeling pretty low @ that particular time... BUT THEN........
Amir???!!! ( His Unlce and hero also battleing cancer in San Diego ) ....... I told him "Amir left you a message, and he said READ IT READ IT" He smiled and cried after that and said "I love him". I asked if he wanted me to read anymore and he then wanted to hear them all. Diane? Marcie? Whitwells? Mithra? All of you!! thank you so so much for bringing the smile to our beautiful sons face by your kind and loving words. ---
Jason says...............
so... this message is to everyone following Amir's blog. I visited him today in the hospital and he looks great. His spirits are high, he told me he has gained some weight and now that one of the 2 drains was removed, he is feeling so much better. It turns out he had picked up an infection and was having to deal with that; but things are looking much better. We went for a walk through the gardens and we enjoyed some good discussion. He expects to check-out of the hospital in the next day or so, they just wanted to keep an eye on him as he started his new meds. Don't read into the lack of posts recently, he is doing ok... your prayers and positive vibes are making a difference. In fact, Amir told me he has been partaking in some yoga and has his appetite back. Regards, Jason E.
Jason is a friend from 7th grade, came to visit him today and so nice of him for the posting as a comment. He made it easier for me because I just copy and paste it.........am I a cool mom or what!!!
Reading comments is one my best time, and I like to suggest you to read Sean's story of Amir on last post (it's one of the last comments). He talked about the incident that I still remember it so clearly, as he and Amir do......That day he came home so proud of himself that he stood up to that guy, because he deserved it and had to learn a lesson! As a mom, I didn't want him to get into fights at all, but in my heart I was happy and smiling. That was an assurance for me that my son can take care of himself. I still believe that he can take care of himself, no matter who the bully is, even the big C.
During past 4 weeks, he was fighting with some bacterias too while fighting with C and still didn't complain.........I am sure with this new med. and his stronger body and spirit, he is going to win it. I don't remember where I read this ; IN IT TO WIN..............this is the story of US together...........
Maman Afsaneh
Jason is a friend from 7th grade, came to visit him today and so nice of him for the posting as a comment. He made it easier for me because I just copy and paste it.........am I a cool mom or what!!!
Reading comments is one my best time, and I like to suggest you to read Sean's story of Amir on last post (it's one of the last comments). He talked about the incident that I still remember it so clearly, as he and Amir do......That day he came home so proud of himself that he stood up to that guy, because he deserved it and had to learn a lesson! As a mom, I didn't want him to get into fights at all, but in my heart I was happy and smiling. That was an assurance for me that my son can take care of himself. I still believe that he can take care of himself, no matter who the bully is, even the big C.
During past 4 weeks, he was fighting with some bacterias too while fighting with C and still didn't complain.........I am sure with this new med. and his stronger body and spirit, he is going to win it. I don't remember where I read this ; IN IT TO WIN..............this is the story of US together...........
Maman Afsaneh
Sunday, July 18, 2010
it's me again, Maman Afsaneh
I hoped Talla and Amir would post something! They didn't and it's me again ( I am not complaining!!!)........only I'm sorry for you guys, you're stuck with my boring post again.
He doesn't write, probably he is a little upset, only a little but still smiling!
The c-scan result wasn't as we would like it to be..........the good news is no change, it showed no shrinkage/no growth, I take it as a good news. What about you?
He is going to start his new treatment tomorrow which is Monday in SD., taking medication(chemo type) every day to beat this big sh...... C( I said the bad word)............please, wish him the best success with this new Pill to beat the heck out of this big C. As, he is a tough guy it looks like his C wants to play tough too! Cousin Tandar said it all in her comment; "When the going gets tough, the tough get going". That's the plan for him and all of us.
He has 450 followers/prayers in 2 months, who can do this?!
Love you all
He doesn't write, probably he is a little upset, only a little but still smiling!
The c-scan result wasn't as we would like it to be..........the good news is no change, it showed no shrinkage/no growth, I take it as a good news. What about you?
He is going to start his new treatment tomorrow which is Monday in SD., taking medication(chemo type) every day to beat this big sh...... C( I said the bad word)............please, wish him the best success with this new Pill to beat the heck out of this big C. As, he is a tough guy it looks like his C wants to play tough too! Cousin Tandar said it all in her comment; "When the going gets tough, the tough get going". That's the plan for him and all of us.
He has 450 followers/prayers in 2 months, who can do this?!
Love you all
Tuesday, July 13, 2010
When was the last posting! by maman A..............
even I don't remember it, do you? Past weeks were difficult and challenging but the good news is: Bili keeps going down, any guess?!
Today is a big day, he is going to get another c-scan to evaluate the result of last 5 chemos. You know how important it is and how much needs your prayers, good vibes and love. Usually I write at night when I am in more relax stage of mind(either because of that glass of wine or brain is tired to be alert or.......!) I am getting so many phone calls and the first question is: why doesn't he write any more, is he OK? just a short message for you, he is OK but tired of being sick. He just wants to jump into the ocean as soon as possible and dance with waves, even swimming with sharks. Brave Amir is not going to be afraid of anything anymore in his life.
Big C changed him a lot and even giving him some extra white hair..........
I can't think of any story to tell you because it's morning and I have to go to work. Talla is coming home today to stay with him till next week. I bet, she is going to write something with him and keep you in loop..........
with all my love
Today is a big day, he is going to get another c-scan to evaluate the result of last 5 chemos. You know how important it is and how much needs your prayers, good vibes and love. Usually I write at night when I am in more relax stage of mind(either because of that glass of wine or brain is tired to be alert or.......!) I am getting so many phone calls and the first question is: why doesn't he write any more, is he OK? just a short message for you, he is OK but tired of being sick. He just wants to jump into the ocean as soon as possible and dance with waves, even swimming with sharks. Brave Amir is not going to be afraid of anything anymore in his life.
Big C changed him a lot and even giving him some extra white hair..........
I can't think of any story to tell you because it's morning and I have to go to work. Talla is coming home today to stay with him till next week. I bet, she is going to write something with him and keep you in loop..........
with all my love
Thursday, July 1, 2010
Guess where I'm going today!
IR round 4 - my tubes are acting up again...lets see how many stitches I'll get this time in my belly...any guesses?
LOVE
LOVE
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