no selling needed

Well-- I was a little worried about dropping the "Grier, we have to go to the clinic all week" bomb-- BUT in typical Grier fashion.... I did not need to sell the idea at all---- I told him I needed to pick him up from school early tomorrow and got the WHY??? I said he had a doctor's appointment... and before I could say what doctor etc.-- he said, " Do I get to go in the back???" ( he was talking about the infusion room)--- I said,  "yes"... and he said,  "Oh good".... "Are you going to get me all 5 days???"  Yes... was my answer again.... he was fine with it--- the only thing he said later to Jeff was that I was picking him up early all week... and he has to miss "reading buddies"-- Whew!  That went a lot better than expected.... but I will say that I had my own breakdown about the whole idea..... I think it was because so many people have asked WHY?? First they say.. "I thought you said his scans were clean".... and THEY WERE--- but we are buying time and keeping him "protected" with CHEMO- "safe with chemo"--- a really crazy combo if you asked me-  I know it is LOW-DOSE but there are still side effects.... He has handled it well in the past-- but he takes LOTS of medication to help ward off nausea and control the BIG D-- everyone handles LOW DOSE DIFFERENTLY-- and each round is different.   I was just "wishing" our lives could move on a little.... I mean longer than 21 day intervals.... I thought the 90 day intervals used to be hard but we have done the 21-28 days since mid-May----  I am tired of the "stuck" or "treading water" feeling.....

That is it--- Kindergarten/Chemo week starts tomorrow... I am sure I will have stories to share....
Let the craziness start (again)-

a little surprised...

Well--- the tests came back and Grier's immune system is not ready to try the Vaccine Trial @ MSKCC-- I am not really surprised... and neither is Dr. K--- he said that with the HIGH DOSE ICE  Grier had in May and July it would be most likely 6 months after that... His suggestion is the same 5 day course of chemo he has had the last 3 times... no surprise there!  I knew when he mentioned that Grier looked great and he was pleased with his activity level since these rounds of chemo I should prepare to do more.... and I was right!  I have made the call to Charlotte to see what Monday we want to start.... I will tell Grier soon... I have to get my salesman act on and sell it like we are going to Disney.... Sometimes I just wish I was surprising him with something great... instead of "5 days in the infusion room"--- After we finish the chemo-- we will head back to NYC-- scan and check immune system.. I am expecting that to be early January... assuming we have no complications in the mean time.... the silver lining to the schedule is we will be home for the Holidays... avoiding expensive airline travel and we will also be home for the bake sale on Dec. 4th @ Park Road Shopping Center/Blackhawk--- There will also be a satellite location at Birkdale Village... Julie Sparks will be in charge of this location.  It is moments like this that make me want to raise more money because chemo is the only choice.... we need to find other ways to keep NB away...

If you are interested in helping at the bake sale... please join our group on Facebook click here--- or sign the guestbook and we will add you to the email list---

that is about it for now--- looks like it will be a "kindergarten/chemo" routine for awhile..... Grier has proven he is a tough cookie... now we need the rest of you all to step up and be a "good cookie"-- I will update often about our heroes battle to stay NED and also ways you can help during the next few months...

Amy



100% of the 3rd ANNUAL BAKE sale proceeds will go to COOKIES for KIDS CANCER---

THE BAKE SALE is COMING..... stay informed by "liking" this page

some good news...

After a little over a year of straight treatment.... including 5 weeks of chemo just since Mid-May for relapse #2--- I just got this email.....


"Tests show no evidence of disease, our group is discussing what next.  One consideration is vaccine"


What does it all mean??? 
It means that we are not anywhere close to being "comfortable" with this---" no evidence of disease" means that the microscopic disease is hard to detect...  Neuroblastoma likes to come back... and we have to find something to keep it away for good... But we are thrilled with the news.... I am exhaling a little more... and Grier is "just Grier"-  Hopefully his immune system is strong enough to try the vaccine.... but for now... he keeps going to school and playing and we keep looking for the needle in the haystack.....


Thanks for continuing on this crazy "ride" with us---

A week in pictures...

Since I am too tired --- I am afraid I would not make much sense as I tried to write an update.... so the next best thing is pictures..... so I am posting our week in pictures..... I can not believe I did not take any pictures while we were in the Museum... well... yes, I can... we were looking for Liam and Ella and the exhibits we were trying to see were closed so it was a crazy visit :) There is a whole day of pictures missing.... but you will get the point..... also they were in order but now they are all mixed up--- just read the captions~  We landed in Charlotte at 12:30 on Friday--- it felt like we had a full day by the time we got off the plane.... packing, cleaning, and hailing a cab to LGA!!! There was no time for a "gentle re-entry" -- I hit the ground running back into my routine.... and so did Grier--- We all went to the MP football game and by the time we got home our beds were calling our names!!! Saturday morning I got up early and went to Greenville, SC with Lesa to "experience" a HUGE bake sale--- and to sell some T's and bottle cap necklaces.  We had a great time and even though I was too tired I am so glad I went.  I was able to see some friends we usually see in NYC-- and I met some other families that are fighting the same battle as we are and two very brave families that fought the same battle and lost their children.

I have not heard from NYC since we left the clinic on Thursday.... I hope to hear something sometime this week.  Grier did an extra blood test to see if his immune system is ready to do it's job--- if he is NED then he will most likely be on the vaccine trial.  We need his immune system to be healthy enough so we are waiting on a test to let us know.  

That is it--- I will update as soon as I can.... all in all NYC was uneventful.... Grier did an amazing job handling these tests and I just tried to "breathe" for the few days we were in the city.... I am still trying to do that... and I think I have learned that will always be the case... so I better get used to it--- 

PLEASE save the date for Saturday, December 4th--- Charlotte's BAKE SALE will be BACK--- and this year we have set the goal HIGHER than ever---- more to come soon.... 

Over $11,000 was raised in Greenville, SC for pediatric kids cancer--- 

Laura Black and a cute little "cupcake"
Laura was the organizer of this fantastic bake sale--- Laura was inspired to do"something" after reading a blog post on GGG---  

more bake sale photos

Greenville, SC Cookies for Kids Cancer Bake Sale-- saturday

Bye-Bye NYC-- see ya real soon!

Grier's new favorite game in the playroom at the Ronald--- 

A trip to Dylan's Candy bar---- we always try to hit this spot--- our tradition!

A picture in front of the Apple store.... 

A trip to FAO to get "something" for being so good during all the scans aka "pictures"

hanging out in the IV room with his buddy, Liam-- 

Part 2 of the MIBG-- spec scan... laying still after bone marrows--

Still a little groggy after anesthesia--- "blowing" powder sugar at Dunkin Doughnuts

staying "still as a statue" for 45 minutes

"snug as a bug" in the scanner!

waiting for the MIBG @ 8:00am

A little BINGO + an eye roll at my camera--- he did not win this time~

Waiting for our plane at the hanger-- doing  little homework with Dad before we have to say good-bye and head to NJ

Being treated like a "king" corporate angels is a great organization... Thanks to the companies that donate empty seats on their flights

A quick nap before we land in Teterboro, NJ

Grier's first request after we landed and made a trip to the hospital for our bag of supplies for the week-

THURSDAY, OCTOBER 7, 2010 10:16 PM, EDT

trying to keep up with my energizer bunny aka as Grier--- been going since 7:30--two scans.. 4 bone marrows and a visit with our doc... so far he is happy with what he sees- still waiting on all tests and final reports--- another visit with Liam and Gretchen.... and a LONg walk to the toy store and dylans.... going to the playroom for some ping-pong and to print boarding passes-- we are coming home in the morning :) more later..... I need to pack.. and clean....  

WEDNESDAY, OCTOBER 6, 2010 9:04 PM, EDT

I am not sure who I was kidding..... I THOUGHT today was going to be a little better since we were in NYC and I could concentrate just on Grier and scans.... when I am in Charlotte it is CRAZY trying to balance everything plus this treatment plan so I was lookiing forward to just doing HOSPITAL stuff.... but that is still a lot---!

I got Grier out of school early again yesterday so we could make our 2pm arrival for our 3pm flight... The flight went well... they treated Grier like a king and we arrived in NYC around 5:30-- waited for a LONG time to get checked in... and hen dropped our bags and walked to the hospital to get our supplies for the week--- meds, instructions, etc.--- it was late 6:20--- but they were still there --- it saved us from a really early morning today- Grier and I went to his pizza spot, ran to Duane Reade for some things that I needed to replenish in "our Box that we leave in NYC" and then came back and went to the playroom for some ping=pong .

We slept later than we wold have if we were home.... 8ish and took our time his morning... no breakfast was eaten because he had to have his CT @ 10:20--- so he drank contrast instead-- all 12oz of it- He keep asking HOW much more???  He finally finished and we left for the hospital around 9:30--- he needed to have his port accessed and a check up from a NP--- We were there saying "hi" to nurses we haven't seen in a LONG time... and they called him back and all of a sudden I FORGOT I had not put "magic cream" on his port--- WHAAAT? so we had to wait another 20 minutes.... while the numbing cream did its magic!  I was really out of this routine....after the port was accessed we went down to CT and checked in-- they said come back in 30 minutes so we went back to 9 to see if we could finish with them... waited... and he had his check up-- they asked me what we had been doing since we were last there... and I almost could not rememeber..... had to go all the way back to MAY and try to remember what dates he had chemo... went back down to 2 and waited a LONG time.... finally around 12:15 he had his CT-- and we left --- he wanted to go to Lester's so we walked 15 blocks--- shopped.... and then walked back to the hospital for the 2nd appointment.... his MIBG injection.... left again around 2:30-- got some lunch at Lenny's-- and went to the Ronald for a second... and left again and took a taxi to the West side -- we went to the Museum of Natural History--  met Liam, Ella, and Gretchen there.... and then went to visit with them for a little bit--It was not long enough --before we knew it -- it was 6:30-- Grier was tired... he ate dinner... got a second wind, played some BINGO--- and a quick game of ping-pong-- and now has crashed!  WHAT was I thinking......?  This has been more exhausting than being at home juggling all three--- And and the mental part of all this---  

Tomorrow-- we have to be at the hospital at 8 for the MIBG scan-- the one I hate... 1 1/2 of staying still--- and me trying to not look at a screen that is all around me--- At 1:30-- he is scheduled for his BM--- SERIOUSLY??????? That means he can't eat until after that because he has anesthesia--- they said to come by after the MIBG to ee if there was a cancellation.... ugh... I hope--- I am so glad I decided not to book a flight home tomorrow---- it would have been really hard doing all that and packing, cleaning etc..... 

enough for tonight---- tomorrow will be here before I know it and we will do this all over again..... 

I can not believe I did not take too many pictures today--- none at the museum.... oh well--- 

Whew... It is October!

September ended a few days ago and I have never had a busier Month.... Life is busy enough with three kids with school and sports... not to mention two of the three that now have social lives.... but add in 30 days of fundraising... and 2 HUGE online voting contests.... plus two weeks of chemo and some tests... and I am not sure how it all got done!   I won't kid you and let you let think things weren't forgotten about--- Yes.. they were-- Lots of emails are yet to be answered and phone calls need to be returned... I will get to that soon... and in the middle of the chaos I switched our phone, Internet and TV to U-verse.... so we are having some adjusting issues too----

We are still waiting on the 30 days for a cure total--- I am not going into all that right now--- but if you went or witnessed any of the 30 days you know Lesa and I were busy marketing etc.... and it is driving me crazy that we are having to keep asking the businesses we worked so hard for and in some cases A lot harder than the check they gave us.... We are trying to get totals from them and checks collected.... That is all I am going to say before I get in trouble....

The awesome news is that Arms Wide Open Foundation won the $250,000 Pepsi grant.  100% of the grant money will be used at MSKCC for the "turbo 3F8"--- it is suppose to be 10x as effective as the 3F8 Grier has received in the past and less painful.... the plan is that is should be in the clinic by late 2011--- still needs more funding but $250,000 is a huge part.  Thanks to everyone that voted during the month and sent a text to Pepsi-  The Jimmie Johnson Helmet of Hope extra $20,000 was won by Cookies for Kids Cancer.... this contest was so close and it was decided by Jimmie's foundation to award both the 1st and 2nd place the additional $20,000--- so $280,000 was won in September and all will go to research for children fighting cancer.  So many wonderful things happened in September... 30 days for a cure was a big part of it--- Lesa and I said we should have video taped each day... ( don't worry... we will have a Flip by the time the BIG bake sale comes in December)-- Thanks for being a part of the month....

Grier and I leave on Tuesday and his scans will start early Wednesday morning.... He will have CT and MIBG injection on Wednesday... and MIBG and Bone Marrows on Thursday.  We will fly home on Friday morning.  I am a little stressed so please don't ask or text me about scans this week... I will post when I hear.... I thought I was not as stressed as I was until the "normal" broken / bad sleep started happening a few days ago--- I know he is in good hands but I am just ready to hear what is going on in that little body since May and 5 weeks of chemo----

I will update from NYC if I can... sometimes if just doesn't happen because it takes forever to get a password.... maybe they have changed that process since the last time we were there.   OK-- that is it-- if I seemed distracted I am .... so pray or do whatever you do that we can move on to plan A.... and skip plan B all together! ( I don't even know what plan A is but I know it has to be better than B)

Winding Down~

The month is coming to an end.... and I am a little excited.... 30 days of fundraising has been fun... and distracting but I am ready to have a "do nothing" day---- hmmm??? DID I SAY THAT????  I am sure most  of you that are "friends" with me on Facebook are excited NOT to see the constant posts!  It is OK... I am a little tired of it too--- I just hate the fact that raising awareness and funds for children fighting cancer  is so hard and come down to voting and selling bake goods.... seriously... Aren't kids fighting the #1 disease killer of children worth more??  I am also excited to hear our 30 day total donation that will be give to Cookies For Kids Cancer---- anyone wish to guess how much we have raised???  I am glad people have enjoyed the month... I have heard they want to keep going into October.... and all I have to say is plan it---!
Lesa and I have to shift gears a little and concentrate on the BIG bake sale on Dec. 4th--- We have set our goal of $50,000--- and can't wait to get some "new cookies" on board to help us~   I would love to see companies sponsor the event --- BIG companies :)

Enough about raising money for the 40,000 children in treatment right now.... I know if you are reading this you want to know how Grier is doing.... Well, he finished chemo last Friday.  He is having the "normal Chemo Diarrhea" -- but it is not stopping him from going to high school football games... playing in his soccer game... and being a very active 6 year old--- he probably doesn't know what is is like to not feel the side effects.  He went to school today for the whole day... it had been awhile since he rode the bus home... I wish he could get in more a routine with going to school but I am reminded by the many caringbridge sites I read that he is lucky to just go at all-- so many kids do not feel as well as he does.   Yesterday was his check up at the clinic and he also had an echo cardiogram     --- the check up went fine... his counts are amazingly almost normal??  We also did his quarterly urine test... it looks for increased hormone markers that might would let us know that NB is present--- I am hoping it is normal-- and even had a bargaining moment with God as I collected the urine and turned it in--- a little more normal would be nice.... just a little.... I want to "buy more" time while some of these new treatments are tested... I know stage 4 NB ( x2 relapses!) has no cure.... I just want to treat it as chronic... not too much to ask, right???

Our NYC trip will be here before we know it--- We will leave next Tuesday on a Corporate Angel flight!!! Thank YOU to one of the banks for going to NYC and letting us ride with you :)  Grier asked me how we were getting there today and I said we were flying with a company and he said... "Uh OH... I got a really bad headache last time I flew with them and didn't feel well"--- He is right... I can not believe he remembers so much... but I assured him we would not fly backwards this time.... He will have to sit beside me-- not across from me!  I still have not booked a flight home but I am hoping to come home on Thursday night or Friday.... really I am gambling -- trying to wait it out and see if we can catch a ride home...  We both are looking forward to NYC a little--- it has been since May and I can't wait to walk around the city if we have some time off from the hospital  schedule....  I was asked today if I was anxious at all--- I guess I am .... I think I am always anxious -- certainly the RMDH and the hospital will increase those feelings because of the number of people we will see in treatment and having scans....

Tomorrow is Day 29--- Mr. K's is the good cookie of the day.... AND my daughter, Grace!!! She turns eleven tomorrow and I could not be more proud of her.... She was in the first grade and so young when this crazy life started for us... and I hope it makes her one tough cookie one day in whatever she wants to do---- either that or it will cost me big in counseling one day.... !! Let's hope it is the first option.... I can't wait to have lunch with her and bring her the awesome cupcake cookies that MacLean and friends baked for her....

This update was longer than I thought it was gonna be.... remember to VOTE on FB for the Jimmie Johnson $20,000 grant money and the Arms Wide Open Pepsi $250,000 grant money--- that is a lot of cups of lemonade....and we don't have to sell it :) If you don't have any idea what I am taking about --- see below

1) PLEASE VOTE for LESS TOXIC treatments for kids with Neuroblastoma.. follow link below-- and TEXT!!! 

http://www.refresheverything.c om/armswideopenchildhoodcancerfoundation

You can vote also vote by texting Pepsi (73774)...to "102653" once a day - we are allowed to both text vote and online vote every day - 






2)

The Jimmie Johnson Foundation - Vote Samsung Helmet of Hope For More

www.helmetofhope.org

Voting begins on Wednesday, September 8, 2010 at 3pm EDT and ends on Wednesday, September 29, 2010 at 5pm EDT.

                      PLEASE VOTE for Cookies for Kids Cancer!!!!!!!!                                                                

I can't wait to cross this blog update off my list of to-do items!!! I have not had the time or the energy to update... we have been so busy with school things... sports ... and FUNDRAISING and raising awareness for children fighting cancer because September is Childhood Cancer Awareness Month!  I bet you know that because you read my blog--- NOT because you have seen it in the media ....... I think the main reason is that there is not one symbol people recognize like the "Pink Ribbon"--- I know... I know... we will get there one day... but all I think about is the seven kids that lose there battle a day because there is not better treatments for children...

Grier had an MRI last Friday.... he had to miss school because it was at 7:30 in the morning. He was fine with the whole idea... a "picture" is nothing to him.  He got a little anxious about the IV they needed to give him so they could inject the dye.  I gave him an ativan and he was OK--- almost too OK--- he didn't flinch when she had to look for a vein... said he looked like a Storm Trooper when they put his head in the mask, and just listened to Kids Bop through headphones while the hour long MRI took place.  He was very still and only had a little bit of "motion" while he made his eye brows dance to the beat of a Justin Bieber song!  So, we had to re-do a 3 minute segment... no big deal...  MRI's are so loud... even with earplugs the rhythmic sound is annoying-- I wish I could take a picture of him on the scanner... he really is a good sport-- and it is amazing he stays so still-- he can only see me by looking up at a mirror-- sometimes he gives me a wink while I give him a thumbs up-- he can not hear me and I stand beside him massaging his feet---as you can see we have a good routine down...  By the time he got up off the scanner... he was "loopy"-- The rest of the day went downhill... the ativan wore off and he needed to sleep and we experienced the worst tantrum in his whole life....after the tantrum he started throwing up.... and I was a little concerned until I got the call from the clinic that his MRI was totally normal.... He has gotten headaches after an MRI before and they have been so bad that he has gotten sick so that is what seem to happen again... He recovered very quickly and headed to Pizza Peel to enjoy the night with friends...

On Monday, he was suppose to have an echo but that was cancelled so he went to school until 10:45-- and then I took him to the clinic to start the week of chemo.  He has completed 3 days of "kindergarten and chemo" this week--- with little side effects... but he is taking a lot of Imodium!  He was tired this afternoon and that seems to be the "normal" side effect of this chemo-- by Wednesday he is worn out--- He naps a little and keeps on going.... He is looking forward to his second soccer practice and game this week--

He will have his echo and urine test on Monday the 27th--- and the following Tuesday, Oct. 4th -- Grier and I will head to the big apple... to finish the scans... We will fly home late Thursday.  The last time I flew out of LGA I was a mess... just found out he had relapsed --- just flying into LaGuardia brings back all those feelings... That is what scanxiety does to you----- I recently read the perfect description of scanxiety --

Scanxiety": acute mental psychosis characterized by, but not 

limited to: irritability, loss of sleep, crying at the drop of a hat, 

nausea, vomiting, heart palpitations, hyperventilating, 

forgetting to breathe, headaches, loss of ability to be rational 

or think clearly, loss of ability to remember why you entered a 

room, loss of appetite OR inability to stop eating everything 

that isn't nailed down, pacing, incessant hand-wringing, 

sweating, staring blankly into space, facial ticks, stepping off a 

curb without looking both ways, and nonsensical muttering. 

Subjects should be assumed to be armed and dangerous. 

Approach with extreme caution, especially if you are a doctor. 

Attempts at humor, perkiness or inane platitudes are at your 

own risk." 

 I appreciate all the offers to go to NYC with us... but I am not good company during scan week... just ask Jeff and Anne!!! Hopefully Grier and I will get a corporate angel flight... and we will be so busy at the hospital that the 3 days we are gone will go by very quickly--- Grier did ask me today at the clinic if he could go to New York one time and NOT get a port--- hmm... I asked him what he would do in NYC and he said he would go to a NY Jets game-- I told him I would rather go somewhere else for a vacation.

OK-- Enough about the medical stuff---since the last time I updated we have had 9 more days of fundraising. We have seen some really "good cookies" during the past 22 days!!  I can not wait to tally up the total and tell you how much money we have raised for pediatric cancer research! Lesa and I have had fun seeing everyone at each location and more fun battling the banner each morning.... There are so many people that have helped us behind the scenes... and we thank you--- When you see us on the 30th I can promise you-- we will have a smile on our tired faces..... it has been a LONG month but so rewarding-We want more cities to take this idea and run with it--- just imagine if there were "30 days for a cure" all over each September.... that would get the message to people that change is needed when it comes to pediatric cancer funding.

I wish I could write about all the good cookies in the last 22 days.... here is one of the moments of last week.... Victoria was a very good cookie --- watch the video for the whole story!  The funniest thing was that I had to fill out a w-9 for the $$ that I donated-- and Grace was a little disappointed when I told her the story as she quickly reminded me that her birthday is in a week---  :)

WBTV video-- I am giving away $300-- ask me how?

so... the plan is to finish the week of chemo... get the echo and urine test in Charlotte -- go to school a few days ( actually go the whole day)-- and start the month off meeting with the docs in NYC about the results of the scans... sounds very familiar.... a holding pattern waiting on "something"-- Who knows what the "something" will be--- we will find out soon enough!

A preview of DAY 22--

Yours Truly

Needlepoint & Knitting

Lynn Edelstein

3802 Columbine Circle

704-366-6765

Wednesday, September 22nd

9-5

100% of the proceeds go to Cookies For Kids Cancer

What is Yours Truly???

A wonderful group of knitters ages 8-88 headed by Lynn Edelstein. After a tour of Levine Children's Hospital she decided to take her passion for knitting and transform it into a Mitzvah(to perform an act of kindness that is above and beyond the normal act of kindness) for the young patients.  The knitters meet at Lynn's home and make blankets and chemo hats for the young patients.  Once a month they deliver these special gifts to the patients.  They have knitted over 400 blankets for the children of the carolinas.

Yours Truly is DAY 22 of "30 days for a Cure"

If you are a knitter you will be able to purchase all the supplies you need to create something special.  If you love buying but not knitting there will be items that have been made by the group to be purchased.  As an added bonus Ed Newman will have some of his artwork there and he is also donating 100% to 

Cookies for kids Cancer---

Please plan on stopping by and taking a look-- you do not want to miss this!

30 Days for a Cure is going really well--- who knew that 13 days would go by this quickly and be this exhausting at the same time--- it has been really worth it.... we have raised lots of money, raised a ton of awareness, and had fun at the same time-- Grier has actually missed the restaurant nights... I think he has gotten really used to dining out with friends! Saturday we saw lots of friends and family at Alphabet Soup--- Sunday at Blackhawk was fun and we added a mini-bake sale--- Grier wore the good cookie costume MacLean and Grace made and ate popcorn the entire time-- who can pass up a bag of Blackhawk popcorn... A lady that worked at Blackhawk came to get some cupcakes, and asked if Grier was with us-- and I said he was but he went home.... I assured her she must have seen him go into the store a few times to get popcorn and she said, "Was he the little boy with the crewcut?"  I smiled and said, YES!!!   Today we were at Black Forest Books and Toys.... and tomorrow will be Ben & Jerry's at 3 locations ( Woodlawn, Fairview, and Providence Rd- Myers Park) Hopefully we will have a halfway total by Day 15-

I am glad I have been busy with 30 days because it has been a great distraction for me while I have waited for the two docs to update each other.  I found out today that NYC wants Grier to do another round of the last chemo he just completed.... I was stunned at first.... because I just knew it was time for his scans... so after MANY, MANY emails back and forth-- I think I understand what the plan will be-- There is a possibility ( a very rare one) in my opinion that he will start chemo tomorrow-- and we will wait a week and then leave for NYC for scans-- OR he will start on Monday the 20th and then we will wait a week and go to NYC for scans... he will have an MRI here in Charlotte and an echo cardiogram -  The main reason for the chemo is to not leave him unprotected while we wait for the next therapy-- it will possibly be the vaccine.  The vaccine is a series of painful shots that he will receive in NYC -- This is a PHASE 1 clinical trial.... I will post more information later... when I know for sure that is the way we are going to go--- ugh-- I just wish there was a clear cut answer to all this.... but there is NOT-- And I wish there was a way to protect him besides Chemo--  This is why I want more research....!!!!

I will update tomorrow-- especially if he starts chemo--- nothing like being flexible~

DAY 11 of 30 days for a cure....

Did you know the average age of a child diagnosed with cancer is six years old? When you save the life of a child with cancer, you give a child 70+ years of living. Tell 6 people today. They can make a real difference.

Alphabet Soup Monogramming Boutique

at Morrocroft Village

PROUDLY SUPPORTS

Cookies for Kids Cancer and

Go GRIER Go

To help find a CURE for Pediatric Cancer

SATURDAY SEPTEMBER 11th from 10am-4pm. 

Come join us to help donate to these two causes to fight this disease!

A portion of all proceeds for Saturday will be donated to these organizations.

A Coupon "treat" will be given to all who make a purchase (either in store or phone or monogramming service too!) to help you save $$ on your next visit to show we appreciate the support.

SHOP - DONATE - SAVE LATER TOO

Alphabet Soup Gifts

3900 B Colony Road

Charlotte, North Carolina 28211

704-554-1616

http://myemail.constantcontact.com/REMINDER-about-Cookies-for-Kids-Cancer-at-Alphabet-Soup.html?soid=1101116669472&aid=YiMiL-zTdUk

http://myemail.constantcontact.com/REMINDER-about-Cookies-for-Kids-Cancer-at-Alphabet-Soup.html?soid=1101116669472&aid=YiMiL-zTdUk

8 days--

Tonight we had Chinese at Grier's request.... we always get take out from the same place and always order the same thing.... I am sure Tai Pei knows my voice and is just polite when they ask what our order is?.... We did something different tonight.  We went and ate it there.. Almost had the same order but Hayes was not with us so we left some items off... As we finished dinner, Grier opened his fortune cookie and it said "PRAY FOR WHAT YOU WANT, BUT WORK FOR THE THINGS YOU NEED."--- I put it on the table like I always do but I kept looking at this one.... Then Grace opened mine and it said the same thing... I think I said "I bet they all say the same THING"-- but Grace proved me wrong by opening the other two we had... I don't even remember what they said... sorry!  As we cleaned up the table I decided to stick this fortune in my pocket... isn't it backwards??? Aren't you suppose to PRAY for what you NEED and work for what you WANT???  I have thought about it all night... while I was trying to think about how I was going to condense the last 8 days that I have not kept up with this BLOG!  To say that Lesa and I have been busy is a huge understatement.. but it is a good busy... The first 8 days has raised lots of money for Cookies For Kids Cancer... we have brought "joy" to some small businesses that stepped out of their comfort zone and decided they would partner with us, and we have raised awareness ... you know.. September IS Childhood Cancer Awareness Month ( I feel like we are the only ones in Charlotte that know it)~  We have had lots of surprises along the week too.... Moe's was our first night and we were floored by their generosity and willingness to continue to raise awareness every month for Cookies For Kids Cancer.  On the 2nd Day, I would get calls and people would tell me that The Buttercup parking lot was full.... and all the cars had GGG magnets on them... Day 3 was like a reunion.... Owen's Bagel and Deli was full of old and new friends....Day 4 at Kixx was fun... we ended up spending the whole day near and in the store... helping people shop for shoes... some as far away as NYC!  Lesa did an interview for South Charlotte Weekly about her birthday wish-- it will be on news stands on Friday.... Day 5 was at Bedford Falls.... Day 6 ... landed on a holiday but that did not stop the flow of people at Which Wich.  This restaurant has only been open for 7 weeks -- not only did they say yes to Lesa about donating a  % of their day but the owners decided to match the proceeds.... WOW... They really are good cookies!  Smoothie King kept everyone happy for a smoothie during the day and they were really busy after school got out... This shop has offered to help again....  Today was Day 8-- and T Reid  & Co. did not disappoint.... The "green house" is full of good cookies.....  There have been so many stories from the past 8 days... so many "good Cookies" following us from business to business... I am sure Lesa and I have entertained a few of you if you have seen us try to put the HUGE banner up--- If the wooden stakes make it 30 days it will be a miracle.... please pray for some rain... because the ground is hard as cement....!

Tomorrow we will be at Chick-Fil-A on Woodlawn from 4-7 ONLY.... please hold off on your tea cravings or quick kids meal until then... Also PLEASE tell whomever is taking your order that you are there for Cookies For Kids Cancer.  If you do those two things Cookies will get 15% of the proceeds of your order....

I can't forget to talk about the employees at Polka Dot Bake Shop that are VOLUNTEERING their time to bake those yummy Special Toffee Crunch Cookies...MacLean is leading the way of the baking and packaging team.... THANKS to everyone that has helped her after hours....  There is no way we could be selling over 300 bags of those cookies so far without their manpower and expertise!  I do have a favor... if you see Heath bars or Skor bars.... we need some... you would not believe how many they have used so far.. You can drop them off to me and I will get them to the bakers :)

So, as you can see we have been working for things we need.... we need a ton more awareness that SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH... and we need a ton more money to fund research for better treatments.... these are not wants for me and the other families... they are needs.... I wish we did not have to work so hard to get this need for our children.... I would love to just be a MOM and I know a lot of other moms that would like to do the same..... but I am going to keep working hard to raise awareness and $$ for research -- and I am lucky to have some great people on our team...  We also have been voting like crazy and texting trying to win grants... there are so many now... Pepsi, Jimmie Johnson, and a new race car with the cookies for kids cancer logo---

AND before I end this BLOG... I wanted to say Grier is doing well.... he went to the doctor today to have his counts checked and they were great.... and I mean his ANC was 4000 and his platelets were 200 and WBC was 5.0-- even after a week of low dose chemo!!  He went to school both days this week and had a great time... he gets off the bus and does not stop.... playing outside until dinner and then goes back outside until bedtime.  Last night he woke up with some arm pain.... we are not sure what it was... but I did mention it at the doctor's office today.  Grier is so smart now.... that he got mad when I said his arm hurt last night... Hopefully it was as simple as his arm fell asleep while he was laying on it.... but the doctor checked it out and didn't make a huge deal of it--- she probably just noted in the chart that his mother is crazy!!! ha!!   I am still waiting on NYC to let me know what the next step is... I got an email from our doctor yesterday and it said that they were going to discuss Grier at the TEAM meeting tonight.   It also said this.... I love thinking about your cute little fellow, in his baseball uniform!-- it was a nice note because I was beginning to think that it is hard to be on the "radar" when you are in NC and not NYC.

It's Friday

AHHHHH... It's Friday... chemo is done!!! I wish I had a lot to say but today was the same as the last 4 days.... which is not such a bad thing.... Grier handled it very well.  I am tired.... not sure where he is getting all his energy.... but I can't wait to not hear an alarm clock in the morning!

Today was the 3rd day of the 30 Days for a Cure -- and I saw lots of people at Owen's Bagel and Deli this morning and heard it was really crowded at lunch --- Thanks to everyone that came-- ... it is fun to keep seeing some of the same people everyday...

That is about all I can say today.... I am worn out... see ya tomorrow at Kixx Shoe Store (one of Grier's favorite places!!!) for Day 4---

PLEASE VOTE FOR THIS!!!

Day 2 was a success.... Thanks to everyone that went to The Buttercup... they were thrilled to be involved and we were thrilled that they said "yes"!!  This 30 Days for a cure is a win/win for everyone.... businesses (which are mostly local and small) are seeing in increase in traffic and sales-- I am sure they are gaining some new customers... and we are raising money to fund research to cure pediatric cancer....
Grier's 4th day of chemo was good---  He went to school for half day and was able to buy lunch again.... He likes to "buy" the lunch but does not like to eat it :)  Everyone that has seen him this week is shocked he is getting chemo... I swear he is.... One of the nurses rode by our house and saw him going full speed in the front yard yesterday afternoon.... and she said she was so surprised because she was the one who gave him the chemo and knows he has a needle in his chest-- I am not sure if that was a subtle reminder for me or what???  I asked her if it is normal and she said NO-- usually the kids are tired and have side effects-- and some have side effects before they even get to the clinic... mostly due to anxiety about what is coming... but Grier just walks in ... and gets down to business... he asks for the "teams" and starts coloring as they start the drip of poison and I put my gloves on to touch the pills that I put in his mouth!

Just a little more info since it is still September :)..... I am often asked why Cookies for Kids Cancer....?? Well, I have had to choose the organization that I want to support.... and it is very important to me how the organization spends the money they/we raise....  I want 100%  or close to it going to research... and I don't want them spending money of administrative costs... Cookies does just that... they fund promising clinical trials that are sitting there waiting but just need money... they are not all for Neuroblastoma but they are all for pediatric cancer.  There are so many organizations that use our "bald kids" to raise money but give less than 3% to pediatric cancer.  So... before you send money somewhere or do a fundraiser you might want to ask how much money will go towards children... ?
The American Cancer Society spends a small portion of its fundraising dollars on childhood cancer. So all the Relay for Lifeprograms that involve kids in schools, while wonderful, give very little to pediatric research or the post-treatment support needed for young survivors.


***Other groups who are not so well known focus only on childhood cancer fundraising: Curesearch, the outreach arm of the Children's Oncology Group, St. Baldrick's Foundation, Alex's Lemonade Stand Foundation, National Pediatric Research Foundation and other smaller organizations across the country.***






ok-- I have asked a lot in the past two days... but here is something that does not cost you a penny... Pepsi is giving a grant of $250,000 and the top two non-profits will "win" it---- Please take time to log in using a computer and vote for Arms Wide Open Childhood Cancer Foundation.  Here is what they are all about and how they plan on spending the money if this organization wins...... This is very easy to do--- and if you don't want to do it online then you can just TEXT PEPSI (73774) and then Text 102653  
This clinical trial will help kids like Grier.... and the sooner it gets to the clinic in NYC the better... because Grier needs options like this...


Arms Wide Open Childhood Cancer Foundation is working closely with scientists, researchers and doctors;who are pioneers in the pediatric cancer field, who are on the forefront of bringing many alternative therapies into clinic which could prolong the lives of children diagnosed with Neuroblastoma until a cure is funded. Right now only 30% of children diagnosed with Neuroblastoma will survive, but because it is an "orphan" cancer, research funding is limited as pharmaceutical companies do not see the efforts as profitable. Recognizing that children should not be viewed as a profit, but, rather, our investment, Arms Wide Open raises money for alternative therapies and actual treatments these children so desparately need in order to survive.

How will the 250K be Used?
Budget Notes: The need is $600,000 in funding to bring the next treatment into clinic. The new treatment is ten times more effective, less toxic and much less painful for the children than the current therapy they are receiving; with this $250,000 grant we will be half way there. Vote to save a child's life!
$ 100,000 Every dollar will be donated to research
$ 100,000 to contract a company for production
$ 50,000 of this new antibody therapy that will save lives.




The Direct Link is... 
(you don't have to register if you text)
http://www.refresheverything.com/armswideopenchildhoodcancerfoundation 


Text is : TEXT PEPSI (73774) and then Text 102653.