I don't want to take a lot of time on this thread.....we're still waiting on the results of Anna's last MRI.......?????
BUT.......I haven't signed in in ages and owe three of you replies. I'll get to it in the next couple of days......Phil, Geoff and Paul........PM's coming and sorry it's taken so long to get back with you.
For those of you that wanted pins and haven't gotten them.......David was going to send me some addresses but he musta got side tracked. So just contact me at email@example.com and I'll get em to you. Those of you that will be at the TSMR or TSR (or what ever it's called now?) I will be at Windy's probably Thurs afternoon and back at the motel Friday around lunch. I'll leave plenty of pins with your inn keeper and ask her to hand them out Friday-Sunday.......so if you want some and I haven't given them to you personally just ask at the front desk.
Received a beautiful batch of BB/Anna pins in the mail, just in time for this weekend's Gypsy rally where I will be assisting at the hospitality tent, and of course participating in the bike games & poker run.
GrandPaul (does not use emoticons) Author of the book "Old Bikes" Too many bikes to list, mostly Triumph & Norton, some BSA & European "The Iron in your blood should be Vintage"
A Nony Mouse Anonymous in California Anonymous in the UK Bob in NW PA bsawood David in Atlanta htown In Memory of Mike Carter Carl Childers In Memory of DennisB Gordon Gray Ob1Quixote PhilM Royal Oilfield Zimm
Total raised to date
We are doing a good thing!
God Bless Anna Mott
Last edited by David in Atlanta; 06/02/1812:23 pm.
A Nony Mouse Anonymous in California Anonymous in the UK Bob in NW PA bsawood David in Atlanta htown In Memory of Mike Carter Carl Childers In Memory of DennisB Gordon Gray Ob1Quixote Old Coastie PhilM Royal Oilfield Zimm
Total raised to date
After doing this for almost six years, I continue to be humbled by the generosity of the people on this forum and the above donors in particular.
We still have a week or two to donate. Don't be shy, It is money well spent, I assure you!
There are two ways to donate.
To send you donation by check, make out to me . Please write Anna Mott in the memo field.
My mailing address is:
David Duke 378 North Peachtree Street Norcross GA 30071
To send you donation by Paypal, my email address is firstname.lastname@example.org. Indicate the money is a gift and mention Anna in the comments/remarks field.
Does anyone need a pin or two? I have plenty! Old Coastie, your pins will be in the mail this week. PhilM, do you need some pins? Anyone else?
God Bless Anna Mott
Last edited by David in Atlanta; 06/02/1812:21 pm.
Today is the last day of Brain Tumor Awareness Month. The 31st day. So I thought we would honor Anna by sharing 31 facts about her experience with pineoblastoma, her brain cancer.
1. Her tumor is listed on the Genetic and Rare Diseases site.
2. We knew she might die in surgery, but had no idea she could possibly come out blind.
3. Anna was symptomatic and in some degree of pain for well over a year before diagnosis.
4. We saw 3 pediatricians in the same practice, 2 orthopedists, and a neurologist, all who missed the tumor. It was a trip to the ER to finally get a diagnosis and the physician nailed it in less than 5 minutes.
5. We found out later that the "episode" that prompted us to take Anna in to the ER was actually a stroke. She had another stroke during her first surgery as well.
6. Even though Anna is stronger now, she still has weakness on her left side. Especially when she is tired. That sometimes causes her to stumble and fall if we aren't holding her tightly as we walk.
7. We found out that Anna doesn't feel pain normally. If she had, like a normal kid, she would have been diagnosed earlier. They said she was in unimaginable pain.
8. Anna cannot remember anything at all from the entire year before her diagnosis. And what she remembers before that can sometimes be off a little. Any memories that were painful to her have been dropped altogether. A little mercy, I think.
9. Even though we lived in our house for 3 years before her diagnosis, Anna has zero memory of the layout and still cannot find her way off the bed without assistance.
10.After surgery, Anna got a bacterial infection in her brain and it almost killed her. We don't know how much it added to her brain damage. Bacterial meningitis in a healthy person can cause brain damage all by itself, so she is a real warrior battling it and the brain cancer both at once.
11.Anna experienced personality changes as part of the tumor growth. We didn't realize that's what it was until after we saw the signs and symptoms of brain cancer.
12.Anna had been upset about weight gain. (Ballerinas can sometimes do that) Turns out, it was the tumor causing it.
13.Anna must have supervision 24/7 and we take care of her every single need. Thankfully we have amazing children who have assured us we have no worries about her care when we are gone.
14.There is a 60-65% 5 year survival rate for pineoblastomas. Anna is now at 5.5 years.
15.Before radiation, Anna's favorite foods included yellow mustard, collard greens, pickles and coffee. Strangely, she cannot now tolerate any of those. Also,she is usually can not distinguish what she actually is eating by taste or feel. You have to tell her what it is.
16.One of Anna's chemos caused hearing loss and we had to adjust her dosage or she could have gone deaf. It was a gamble because we had to kill the cancer but it was an easy choice because what life would it be to be blind AND deaf?
17.Anna was always a very visual person. Her interests were fashion, photography, and dance, and writing. Thank goodness her main love was music. It's about the only thing she is able to enjoy now.
18.Anna doesn't like to be touched now. If we want hugs and kisses, we usually have to steal them.
19.Neuropathy is a very common side effect of Anna's chemo cocktails. But we don't know if she has it or not as she can't always communicate to us. When we were at the beach once, on our Goodwill trip to Jamaica, I saw when we got back from the 2 hour ride to the hotel that she had cut her leg all the way down to the fat and she had no idea.
20.She cannot watch a new movie. She must watch things she knew well from before. Weirdly enough, she knows every single line to seasons 1-5 of Spongebob. It's uncanny.
21.Anna had such short term memory loss after her two resections that when she was strapped down to the table for radiation, she would forget why she was there by the time they closed the huge leaded doors. She would scream and have horrendous panic attacks because she wouldn't know where she was. It was akin to being locked in a tight box in the dark. We had to give her calming drugs and the techs would keep assuring her during the process.
22.When we signed the permissions to treat Anna with the radiation and chemo, reading through the "could happens" and "have to watch for side effects of" were terrifying. But those risks were nothing at the time because if we didn't do this, we wouldn't have her anyway. Making a choice like that? Wouldn't wish it on my worst enemy.
23.We saved Anna from the initial cancer, but now, 5.5 years later, we have to watch for secondary cancers from the treatments, heart damage, lung damage, and more. The treatments rendered her unable to have children almost immediately. She has to take estrogen supplements as her ovaries are basically dead.
24.Anna's initial pain started in her back, not her head. She had lower back pain, then numbness and tingling down her left side for a while with no reflexes, then finally around 6 months before diagnosis, she began with the headaches.
25.If we would let her, Anna would lie in bed for weeks without leaving. Brain tumors cause exceptional fatigue, even years later.
26.We thought Anna was going to be the exception to losing hair. She hung onto hers all through radiation and her first 3 months of chemo. But when it finally left, it's gone for good. I still have her braid from that beautiful long head of hair she had. Scalp radiation usually causes permanent hair loss.
27.Anna's favorite thing now is Coke. I struggle about letting her have it or not. But most days I'm like, "what else does she get to enjoy?"
28.Because of the treatments, Anna's once beautiful, prized-by-her, teeth are ruined. She has tons of cavities and is having oral surgery to remove two of them plus tons of dental visits during the year. The very first thing she said when she woke from surgery is "where's my orthodontia"? (retainer) Those teeth meant the world to her. But she's blessed. Tons of younger kids don't even develop teeth because of the treatments, or deal with severely malformed ones when they erupt.
29.Whenever we go out in public, we get tons of looks and stares. Mostly inquisitive. Sometimes rude. And sometimes divine. We have had so many people come up to her and burst out crying, asking to just touch her or pray for her or exclaim how blessed she made them by seeing her.
30.After the first night, Anna never cried...not even once...during her treatments. Unless you have seen it, you cannot imagine the procedures and pain that come with a brain cancer diagnosis. I'm still in awe.
31.Anna's last night of being "Anna", the night before her first resection, as we discussed if she loved Jesus and I lay there knowing she may not come out of the surgery alive, her words to me and greatest wish were that she would inspire others by her behavior, her fortitude, and her faith. I share Anna's story to honor her biggest wish. Go Gray...not just in May, but every day...for Anna and other brain tumor warriors.
My family and I will present our check to Anna this Tuesday, June 6th. If you would like to donate, please paypal me today or tomorrow at email@example.com. Indicate it's a gift for Anna in the memo field. Please reread the italicized portion of #31 and consider helping out.
$3,500 would be nice, don't you think?
God Bless Anna Mott
Last edited by David in Atlanta; 05/31/1810:50 pm.
A Nony Mouse John Amoroso Anonymous in California Anonymous in the UK Bob in NW PA bsawood David in Atlanta John Dawkins htown In Memory of Mike Carter Carl Childers In Memory of DennisB Gordon Gray GrandPaul Ob1Quixote Old Coastie PhilM Royal Oilfield Jon Whitley Zimm
Total raised $3,680!
THANK YOU ALL. Melissa and Steve shed tears of joy last night. Melissa thanked us (and YOU) for ALWAYS helping.
In Melissa's words:
To David Duke, and all of you along with him, who loved on our girl, you have overwhelmed us with your love. Tonight, oh yes, but day in and day out. Each step of this long road that you have helped hold us up. That you have supported us in word and deed. This journey has been so long, and we are eternally grateful to each of you. It’s not enough, but thank you. Thank you.
Anna will have her dental surgery this morning. Because of our Christmas donation, it is paid for . THANK YOU! I will keep you posted.