Two things---

Just wanted to let everyone know we are ready for our extended stay in NYC--- well...... not really but we are pretending!!!! My mom will be going with Grier and I to New York tomorrow. He will start radiation twice a day on Tuesday and it will be 7 days-- 14 treatments all together. I will be updating from NYC -- promise--- I am feeling a lot better! I am hoping that in between treatments Grier will feel well enough to enjoy the Holidays in the City--- there is a lot to do and see this time of year~ After radiation, if all goes according to plan he will have another round of 3F8 ( antibody treatment)- and we will be home on the 19th to enjoy the Holidays at home-

I honestly can not believe how fast our time at home went -- I am pleased to say the Christmas tree is up at our house-- and "some" decorating took place--- I was afraid after 19 days in the city I would not be up to decorating so we did a little now-- :)

Grier loves to check the mailbox-- if you want to send a note please send it to this address--- PLEASE DO NOT send large packages ( there is NO room in the room or in our suitcase--- :) If you must send something.... he likes stickers, coloring books, musical cards, quarters...

Our address in NYC---

Grier Christenbury

405 E 73rd St Room 311
New York, NY 10021

Please see the email below-- I know I have mentioned the bake sale a few moms have planned -- IT is going to be AWESOME--- I am so upset I will not be here to see it!!! They are in need of volunteers to make this a success-- Please help out if you can-- Lots of people and businesses have been working hard to make this a success---!!! I hope someone will be taking pictures from Reid's and Blackhawk so I can see it from NYC---- Thanks in advance for all the hardwork....

Amy

After participating as part of the Go Grier Go! Team at the Cure Search Walk to Conquer Kids’ Cancer, a group of WDS ( First Pres Weekday School) mothers was inspired by the support and community outreach from those who are passionate about finding a cure for Kids’ Cancer. It was also sobering to discover how many children in our community – alone – have lost their lives to or are battling Pediatric Cancer.

Grier Christenbury’s mother, Amy, has provided the following opportunity to raise awareness and funds in an effort to find a cure: Cookies for Kids’ Cancer (CFKC) Bake Sale: Sunday, December 13, 2009 1:00-5:00 PM

A group of WDS mothers have begun the process of collecting donations and obtaining sponsorship from local bakeries and shops, such as Polka-Dots, Edible Art, Suarez Bakery, Dilworth Coffee, and Smoothie King.

Two CFKC bake sale locations have also been secured:
– Reid’s Fine Foods (225 E. 7th St, Uptown)
– Blackhawk Hardware (Park Road Shopping Center)

Both locations offer the opportunity to raise awareness and funds to promote the CFKC cause because of the visibility they provide to the general public.

Amy mentioned that she really wants to have a CFKC bake sale before the end of the year because of GLAD’s - Glad to Give Program and their generous contribution to match the proceeds made from a CFKC bake sale.

The WDS will be the primary source for the success of this bake sale, and we need your help! We have identified a list of duties below. In most cases, we have determined a designated number of helpers needed for each location. However, as far as bakers go, there is no limit!

If you are interested in volunteering, please send an email to Mary Casey at caseymm22@yahoo.com. Indicate: Your top 3 interests, the location (Reid’s or Blackhawk Hardware).that is closest to where you live and you plan to support, and a contact phone number. We will accommodate on a first-come first-served basis and notify you of where your help will be needed most.

Thank you, in advance, for your time and consideration. As the mother whose idea it was to create CFKC says, “If it takes a village to raise a child, it takes the world to fight Pediatric Cancer.” We’re in this fight because every child battling Cancer deserves a fighting chance.

For more information, please visit:
http://www.gogriergo.com/
www.cookiesforkidscancer.org
www.glad.com/gladtogive



CFKC BAKE SALE LIST OF DUTIES
Bake Sale Preparation Helpers

· Volunteers to place promotional signs in storefronts (10, 10 storefronts each)

· Bakers (Unlimited): Please label and provide baked goods on a covered plastic tray.

· Volunteers to provide paper lunch bags and GLAD plastic bags of all sizes (Unlimited)

· Sign-Makers (6 per location):

Direction will be provided.

· Volunteers to offer home as a drop-off location (4) to accept deliveries on Saturday, December 12 from 2:00-4:00 PM and have deliveries available for pick-up on Sunday morning before the bake sale

· Pick-up and Delivery Drivers (6): Needed on Saturday, December 12 from 1-4:30 PM to pick up baked goods and supplies and drop them off at drop-off locations. Clean truck or van is needed.

· Pick-up and Delivery Drivers (3 per location): Needed on Sunday, December 13 from 11-3 PM to pick up baked goods and supplies and drop them off at bake sale sites. Clean truck or van is needed.

· Volunteers to Transport tables and chairs (2): We need someone to pick up tables and chairs and deliver them to the bake sale sites and then someone to return them after the sale.

· Sign-Holders (8 for Reid’s and 8 for Blackhawk Hardware): This is a great duty for older children!

NOTE: We need freezer space! If you have a deep freezer, please let us know.

Bake Sale Location Helpers

REID'S

11:00-12 noon Set-up (3)

12 noon-1:00 PM Set-up(5)

1:00-2:30 PM Station Helper (5)

2:30-4:00 PM Station Helper (5)

4:00-5:50 PM Station Helper (5)

BLACKHAWK HARDWARE

11:00-12 noon Set-up(3)

12 noon-1:00 PM Set-up(5)

1:00-2:30 PM Station Helper(5)

2:30-4:00 PM Station Helper(5)

4:00-5:30 PM Station Helper(5)

13 days later-----

It has been 13 days since I last posted a blog-- that is a lifetime when life is moving as fast as it has been lately.........

I am going to try to catch everyone up. All three kids ended up getting the H1N1 shot and it was not that bad--- they actually did great even Grier-- he did not scream nearly as loud as he does for the shot I give him-- After we finished, Grier wanted to go to school so we took him. Hayes and Grace had a day off that day-- Grier and I ended up not having to fly to NYC on Wednesday-- which was a good thing-- but made life chaotic for a whole week-- I was actually really glad partly because of the bad weather we were having and I had not been feeling great-- The radiation simulation was still pending approval with insurance so it was decided we would just worry about it when we got to NYC on Sunday-- We had a corporate angel flight scheduled for Sunday morning (8am) so at least that part of the travel plans worked out-- or so I thought that week!!! Saturday night around 8pm we were at home and packing with the help of my mom because I was feeling bad-- I was trying to rest and not stress.... and the phone rang--- Yep- Corporate Angels called and told me the flight in the morning had been cancelled-- and we would have to make other plans-- so there went controlling the stress--- I booked last minute tickets on USAIR for Jeff, Grier, and me-- we left the next day for NYC around 11--

We only booked a one way because plans were still up in the air about when we were going to fit in the simulation and start radiation 2x a day.

Monday...... it was definitely a MONDAY--- we woke up and got ready to get to the hospital to start our week of antibody treatment... 3F8-- again I was not feeling great but kept going-- We walked to the hospital around 8 and 3 blocks into the walk I was feeling weak and faint-- so I bought a banana from the "guy" on the corner--- we walked 2 more blocks and got the the corner where MSKCC is and Jeff looked at me and said "Are you going straight or LEFT????" Well-- straight was MSKCC and Left was NY-PRES ER--- I had tears in my eyes and said LEFT I have to know what is going on-- So we went our separate ways-- he took Grier to Sloan and I went to the ER--- I can laugh about it now--- but at the time it was not funny--- After a quick visit in triage and an EKG I was sent back to some area in the ER--- basically I was having heart palpitations and my blood pressure was up and down--- The doctor gave me attivan and I never saw them again until 4pm when he told me to go back to the Ronald and try to avoid stress--- This is the short version--- but I did leave and ended up running into Jeff and Grier as they were walking back to the Ronald as well--- Grier and Jeff did great at the first day of 3F8-- he had lots of help from the nurses--- I knew they were going to be in good hands!

The rest of the week went like any normal day of 3F8--- lots of pain, lots of narcotics to control the pain and lots of hives-- Grier also slept A LOT--- most days he did not wake up until 6 or 7 pm-- Jeff left to come back to Charlotte on Tuesday afternoon and my mom flew in to help with the rest of the week. On Wednesday , Grier ended up needing a blood transfusion so after 3F8 was finished he was transfused with blood. We also had the radiation simulation appointment after the blood was finished... so around 3pm he was waking up from all the premeds and we were going to radiation to make the mold and do the measurements they needed to start treatment... it was a 45 minute process-- he had to lay perfectly still on the table. Two years ago, when we did this he was asleep but this year we thought he was old enough to stay still. He did great but it did not start out so well... he was very upset and after we got him calmed down the process was complete- We got to go back to the Ronald and rest and finish sleeping off the Dilaudid. So, that was our crazy week of 5 days of 3f8 and radiation simulation.

Thursday afternoon Sloan called and told me that radiation would start Dec. 1st--- which was good news. It meant we could be home for Thanksgiving. I made last minute reservations again and my mom, Grier and I flew back to Charlotte on Saturday. We ended up leaving things in our room because my mom made a trip to bed bath and beyond to get some mattress pads for the beds and other things the RMDH is lacking-- The flight home was a little easier because we were traveling a little lighter-

Grier has felt great since we have been home. He is able to go to school 2 days this week. Grier was able to play in the last soccer game of the season--- all of his teammates were great! He had a great time and scored two goals and got his trophy-- he was a little confused because he wanted to play more games but the trophy made up for any bad feelings!!

That is about it for the update-- sorry I did not update last week... I know I have missed a lot-- but did not even open my laptop for the first two days and then when I did the RMDH did something new with their wi-fi so I have to request access--- I have it now so I will update more often when we go back on the first- Our plans right now are to stay until Dec. 19th-- my mom is flying back with us and then we will go from there. Radiation is twice a day for 7 business days. The next week he will do another round of 3f8 --- but as we all know this could change--

This week at home will be spent doing some normal stuff, enjoying Thanksgiving and recovering ( Jeff has been sick too!!)--

Thanks for checking in- see pictures below or on gogriergo.com

Amy

ps--- I am going to post about an exciting event happening in Charlotte-- Some parents from the Weekday School have organized two bake sales to benefit Cookies for Kids Cancer-- They are asking for lots of volunteers so please be on the lookout for the next post about it-- Reid's and Blackhawk have been kind enough to allow them to set up in front of their stores-- they also have lots of bakeries around town donating goods for the sale-- all they need is some man power--- I told them I was sure we could get people to help so PLEASE volunteer-- more to come soon-

still not 100% sure of a plan!

I am still here and about 90% sure we will not have to go to NYC until Sunday morning--- I guess I will be 100% sure after 2:40 and I am not on the airplane!!!! Insurance is holding things up-- this is a first-- and I am not sure if they rushed it or what but I will find out on Monday---

So-- tomorrow will be fun.......not really all three are getting H1N1 shots early in the morning-- AND yes.. I was reminded by Hayes... that tomorrow is a day off from school and I am making him get up early to go to the doctor!! After we get that done-- Grier will go to school ...

Tomorrow is the day Grier has to start shots to increase in WBC so the 3F8 will work-- sounds crazy and it is--- I will put a link on here to explain what 3F8 actually is--- He will have these shots every day until next Friday-- and I can assure you he will not be happy about it! Since all of this is rushed I will have to fax forms to NYC and go find the medicine for the shots-- and HOPE there is not an insurance issue with that!

So, the plan now is to fly out Sunday morning... around 8am--- start 3F8 on Monday--- Jeff will fly home on Tuesday night-- and my mom will fly to NYC on Tuesday to finish helping for the week- Not sure when and if they can fit radiation simulation next week-- but I hope it is not any later than Monday--- It could be 4 weeks in NYC---- GULP!

I have been so busy today putting up Halloween--- and I can't help but think I should start bringing down Christmas stuff from the attic---

one day at a time-- ( yeah.. right!! )

I had all intentions of trying to write a blog entry that did not sound so unorganized--- but as soon as I sat down to type it all hell started to brake loose--- and my mind has been going in overdrive ever since! So... it will be another entry that is all over the place but I guess that is the life we have been living so I should just get used to it!! :)

I will start with Saturday..... it was a great day all around AT the walk--- The Go Grier Go Team did an awesome job raising money for research--- The show of support at the park and in spirit was felt--- and the sea of RED shirts could not have been missed!! We are very lucky to have such a great team--- All the teams raised over $77,000 for CURESEARCH so they can continue research and provide clinical trials so a cure can be found-- Our team raised over $12,000-- very impressive!! Certainly the most touching part of the day was the release of the balloons to remember those we lost to cancer--- last year I was busier with the walk and was up on stage when they were released and this year I was sitting beside a friend and watched those balloons (way too many) fly away ~ It hit me a little harder this year-- maybe because I have known so many~maybe because the damn "R" word is fresh in my mind- When I think about my favorite part of the day I just can't think of one moment--- I love when the kids get their medals-- Grier still asks "WHY do I get a medal?" and when I tell him because he is brave and tough at all the doctor's visits he says OK.... He does not know life any different.... I also loved when the young girl 20 something?? said her name and then said she had been cancer free for 17 years-- I do not hear that story enough... and it was nice to hear after watching all those balloons fly away--- I also loved watching Grier walk 3 laps around the lake--- chatting the whole way with his teachers like he had been in their class all year--- If it were not for the bald head you would not have known he just had major surgery and 2 rounds of high dose chemo 2 months ago-- Saturday was a good day--- and Grier and all of us thank you for helping !!

Today was another Monday for Hayes and Grace but for Grier it was his first day at school-- Yes, you read that right.... Last week, while we were in NYC he got the OK to go to school--- I told him on Sunday and he was ready to go--- he even told me he would do carpool in the morning--- I told him I would like to walk him in the first day--- and he allowed it!! But he was going to do carpool in the afternoon-- I was not worried about him at all-- it is actually a nice feeling to have a such great school-! He had a great day.... he loved music... he loved playing on the playground and he talked about his day and friends all afternoon-- he can not wait to go back in the morning and be dropped off at carpool!! While Grier was at school I was going to type a blog entry and then the phone rang-- I have a love/hate thing with caller ID--- honestly I hate to see MSKCC show up-- because it makes my heart drop.... and this morning was no different-- I was not expecting bad news but I think I was feeling very normal after taking Grier to school and that was a quick reality check~ When I answered I heard the familiar voice of Dr. Kushner's assistant -- she asked if I had a minute... which was a new question from her and I said yes-- then Dr. K was on the line. This was a first-- I usually get quick emails but no phone calls-- so I sat down to listen... I will cut to the point but he wanted to know if Grier could come to NYC this Wednesday for Radiation set-up-- they make a mold of his body and tattoo him ( yes.. real tattoos not a sharpie) ~ I was thrown a little because I had not heard the tests results or the plan and I was thinking at the earliest we would go to NYC on Sunday night to start 3F8 ( antibody treatment)-- so, after I asked him a ton of questions I said I guess we can come--- well-- that started the day of trying to book a flight etc.... and then I get the call that it may not be approved by insurance etc. etc. So, I was a little frustrated because I can not book air travel without a plan-- and I don't have a jet in my backyard just waiting--- and I am not in NY-- but CAROLINA---(sorry that really was what he wrote in my email) And I really thought we would be home for a week-- My plan was to fly up with Grier on Wednesday-- and fly home on Thursday night or Friday morning-- And if we start antibodies then I would fly back on Sunday-I can hear some of ya'll now-- WHY does she not just stay in NYC---? Well.. I would but when we fly back for antibodies it will be followed with 7 business days of radiation and possibly followed by another week of antibodies-- And I am looking at my calendar and all I see is mid NOV--- and DEC in NYC-- probably some people's dream but not mine and not Grier's-- we like to be in CAROLINA-- :) So, it is Monday night and after a DAY of schedule changes I know nothing new-- maybe tomorrow we will find out if we fly to NYC on Wednesday-- this is the stuff that drives me crazy! And trust me this is the abbreviated version of the phone calls that went on during the time Grier was in school and this afternoon-- There is one good thing going right now-- IF they get us on the schedule for Thursday we have a corporate angel flight to go up to NYC--- We also have a flight for Sunday morning--- but it all depends on them-- and after all these months I still have a hard time not being able to have some control of this situation!

As you can see we are still rolling with this new normal-- maybe the next entry will have a plan -- who knows... all I know is Grier is going to TK tomorrow and I will hope for a less chaotic morning and some answers to where we will be this week and next and Thanksgiving-

A CRAZY WEEK---

We are back from NYC-- I know some are wondering why I have not posted anything in awhile so I thought I would do a quick update-- Grier had 2 days of tests in NYC-- the same ones he always has so nothing was out of the norm. He was a trooper as usual-- I really can not explain what he actually has to do in a short amount of time--- you would be amazed! And the best part is when he leaves the hospital doors he seems to be OK-- He likes NYC for a few days at a time-- actually I like it for a few days-- so this trip was almost perfect-- we arrived Monday at 6pm and left Wednesday at 7pm-- I do not know any details of the results-- We have to wait on those to see what clinical "trial" Grier can participate in-- That is the part that makes me crazy-- there is nothing out there better than a "trial"! I am not going into details but we are in for a long couple of months with lots of NYC trips-- and the hard part will be to balance NYC life with CLT life because that is just as important~

Tomorrow is a big day for the Go Grier Go team--- we will walk and participate in the 2nd annual Milestones Walk at Freedom Park--- Our team is almost 200 people strong this year and there are several people on the team that have raised over $500 on their own-- That is AWESOME!!! The only way we are going to end this madness is through research so they can find a cure and I am proud of our team for stepping up and making a difference- I got an email from someone and they said they walked in the Avon walk and it raised Millions and she hoped someday that would be the case for pediatric cancer--- I agree but until we ALL make kids a priority than it will not happen--- I think the nicest thing you can do is help raise awareness in honor of a child-- There was a bake sale at the Rogers home last weekend-- they raised $200 for Cookies for Kids Cancer in honor of Grier-- I hear they had a good time doing it-- It is those things that make me smile-- Thanks to all that helped!!!! I was also told of a bake sale in the works-- and it sounds like it will be awesome too--- this helps me more than you know !

Watch this video-- I promise it will inspire you to make a difference --- I get asked all the time if I need something--- and I don't know what I need most of the time and sometimes I need things that no one can give me but by doing things like having a bake sale helps me by knowing that you are in this fight with us--www.youtube.com/watch?v=Lr03uNt4dLk-

I have a new brand I love and that is GLAD--- finally a company to step up and make a difference for children-- www.gladtogive.com --

Thanks to all those who are walking in person or in spirit tomorrow in Charlotte-- I hope with increased awareness and funding more kids will reach their MileStones without dealing with cancer and the side effects from the current treatments available-

See ya'll at 9:30am --- if you are coming to stroll around the lake- more to come later---

Amy

Next on the Agenda!

We are packing up Halloween Stuff around here--- no time to waste because we are leaving tomorrow for the Big Apple-- Halloween was fun but very WET--- I can not believe we even attempted to trick or Treat in a downpour--- As we were walking up towards the haunted garage, Grier said "Do you think the creek will flood again??" That might tell you it was not just sprinkling!!! He ended up having a great time-- even though he said it was the worst Halloween EVER!

Laundry is getting done around here and lists are being made so I can leave with Grier and my mom to head to NYC-- we leave tomorrow around 2:30--- We do not have to go to the doctor tomorrow so who knows what we will do when we get there-- Our day will start early on Tuesday-- and we fly out Wednesday night-- not too bad!

Not quite sure if I am taking my laptop this time--- I have heard there is no service at the Ronald so I may just avoid the headache--- so if I do not update that is why---

AND finally--- Go Grier Go T-shirts for the Milestones walk are here -- and sorted-- Melissa Bond has the shirts that will be delivered to the WDS-- And I have a big box in my house-- Jeanna has offered to bring the T's to the walk on Saturday morning-- if you would like the shirts before I will put them on my porch on Thursday and Friday-- when I get home-- !

Thanks for all the emails lately-- I have been very slow to respond-- but I have gotten them!

Go Yankees!!!