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Happy Day After Mother’s Day/Scanxiety

By Margot | May 12, 2008

Charlie driving his girlSam holding CharlieTwo Andrews = Trouble

Pics:  Charlie driving his girl (Ava) nice chocolate face – who is his mother?

Sammy holding Charlie on, and Andrew and Andrew driving the crew = trouble 

 

We had a wonderful Mother’s Day weekend.  We went up to Irvine for Andrew Castillo’s birthday party. They had a reptile/bug birthday guy come and the boys got to touch and hold huge lizards, a tarantula, a scorpion, snakes -including an enormous python that all the kids had to hold together because he was so huge.  Sam held all of them, Andy touched them all but didn’t want to hold them and Charlie “pet them” while I held them.  Dad was conveniently filming it all.  I hate to say Neil is more squeamish than I am about all that stuff but, Neil is more squemish than I am.  After the party we all went swimming and then played at Cathy’s house.  She has a great neighborhood for the kids to go outside and run around.  Pics are from them driving Andrew C’s tractor.

Yesterday was wonderful, the boys each made me a card that almost had me in tears, they were so sweet and Neil got me roses.  We took the boys to the new Children’s Museum that opened downtown and they had a ball.  At one point I was out on the deck blowing bubbles with Charlie and making him laugh and I looked back inside where Sam and Andy were racing wooden cars they had made down the track.  I saw their two little red heads pop up smiling at the same time where they stepped up to let their cars go down and I watched them enthusiastically race them down and run to get them with Dad who was waiting at the end of the track and I felt so lucky.  

Wednesday is the injection for the scan and Thursday is the MIBG scan.  I would be very confident (oh really who am I kidding - we always freak out) because Sam has been feeling so great and in good spirits but since his numbers have been going berserk, it’s not so good.  There always seems to be a caveat with the numbers and this one’s actually pretty convincing:  Sam has been taking curcumin because there has been some wonderful research by a doctor at MD Anderson showing that curcumin (which has no toxicity) has a very strong anti-tumor effect. There has been good research in NB cells as well.  Curcumin also effects dopamine and seratonin and has been used in some studies as an anti-depressant.  When we get back the VMA/HVA is says (and I’m paraphrasing here) that barring a dopamine injection the high numbers could be caused by NB tumors.  Now, does curcumin create the same effects as a dopamine injection – I don’t know.  But the numbers do correlate to when he started taking it.  So, there is my ray of hope for the week.  If I didn’t have that ray, I think I would be out of my mind because I really can’t remember when Sam’s HVA has been this high (diagnosis probably).  So, there you have it. Scan is Thursday at 2:30pm.

Happy Belated Mother’s Day to mom’s everywhere, and our hearts go out to those of you who undoubtedly had a tough one.

Margot 

 

   

Topics: Progress Reports | 4 Comments »

4 Responses to “Happy Day After Mother’s Day/Scanxiety”

  1. Mrs. Heather Says:
    May 13th, 2008 at 2:38 am

    Sam…you will be in my thoughts and prayers on Thursday. I just know in my heart that everything is going to be okay.

    Love, Mrs. Heather

  2. meryl witmer Says:
    May 13th, 2008 at 11:38 am

    Hi,
    Hi Guys,

    I hate scan week…just makes me crazy…but, I have to agree with you, Sam looks absolutely fantastic!!!!

    Great photos too…

    L,

    Meryl

  3. Donna Ludwinski Says:
    May 13th, 2008 at 1:31 pm

    Dear Margot–what a term to coin–scanxiety it is! I am praying so hard for good news and the scanxiety doesn’t take its usual toll.

    I really chuckled at your description of the critters the boys were holding/petting, and Neil was the squeamish one! Funny! God picked the right Momma for a family of all boys!

    Praying ever so much.

  4. meryl Says:
    May 15th, 2008 at 2:48 pm

    Good LUCK today!!!

    L,

    Meryl