More ways to purchase a Go Grier Go magnet!

Drop by these local stores:
1. Winestore (http://www.winestore-online.com/) at the corner of Sharon & Colony
2. T. Reid and Company (http://www.treidandcompany.com/) 429 East Blvd.
3. Alphabet Soup Gifts (http://www.alphabetsoupgifts.com/) in Sharon Corners-4724 Sharon Rd.
4. Charlotte Swim Academy (http://www.charlotteswimacademy.com/) 9315-A Monroe Rd. after 2/28/08
5. Black Forest Books and Toys (http://www.blackforestbooksandtoys.com/) 115 Cherokee Rd after 2/27/08

Or Contact:
1. Trisha Riesmeyer at eriesmey@bellsouth.net
2. Mary Ellen Paine at spaine@carolina.rr.com to arrange pickup at First Presbyterian Weekday school
3. Hannah Blanton at hblanton@carolina.rr.com to arrange pickup at Covenant
4. Betty Graybeal at cgraybea@interserv.com to arrange pickup at ETES after 2/29/08

Magnets are $10.00 each. Please make checks to Go Grier Go.

Thank you again for helping to support the Christenbury Family!!

Go Grier Go Magnets are Here!

Help support Grier and the Christenbury family by purchasing a Go Grier Go magnet today!

You will not only be supporting the Go Grier Go Fund to help defray medical & travel expenses for Grier's treatment, but you will be helping to fight Neuroblastoma! A portion of the proceeds will go to www.Bandofparents.org, an organization founded to help raise funds for neuroblastoma research.

$10.00 per magnet

To purchase yours today:

1. Contact Trisha Riesmeyer at eriesmey@bellsouth.net to arrange for pickup

2. OR - If you are a family from First Presbyterian Weekday School, contact Mary Ellen Paine at spaine@carolina.rr.com to arrange for pickup.

2. OR - contact Hannah Blanton at hblanton@carolina.rr.com to arrange a pickup at Covenant

3. OR - Drop by Winestore, located in the new shopping center at the corner of Sharon and Colony Rd near Southpark, to pick yours up starting Tuesday, February 26th.

** Look for more local area stores for pickup in the week's to come.

**If anyone is willing to be a point person at Elizabeth Traditional Elementary School, please contact Trisha at eriesmey@bellsouth.net **

Good News!

Good News-- We heard that the Bone marrows, both aspirates and biopsies are clean-- whew! Now we can breathe a bit until April when we have the next set of tests-- Test time makes me nervous!

Thanks for all my emails today-- that "little birdie" was busy telling people that is was my birthday today! We had a nice LOW key day at HOME!!! Who would have thought that is the way I would like things now??

Grier did OK with the accessing of his port! I put numbing creme on it as we walked out the door to take Hayes and Grace to school--!We got the clinic about 45 minutes later and Nurse Dawn did a great job at minimizing the trauma and Sharon ( Child Life) came to help distract-- And it was over quickly and with only a few tears! I asked Grier if he thought the numbing creme helped and he said NO! :)

The accutane is going well--- Grier is very proud to tell people "I can swallow Pills!"-- He had a few moments of tummy pain and nausea-- but I am assured that it was due to accutane...!

So.. it was a good day at our Charlotte Clinic-- I wish that we could be treated there full time-- NY is nice but it is not home-- We just need a FULL-time Neuroblastoma Researcher on board at CMC!! We are still waiting on bone marrow results so I will let you know as soon as we know something!

We have had two days at home and they have been great EXCEPT for the nighttime-- Grier is having some residual pain from 3F8 and it seems to hit at bedtime!! So.. we are very sleep deprived at our house!

The good news is Grier had no problem swallowing the 3 pills today-- It surprised me!
He swallowed the first one and I checked in his mouth and it was gone... then the second one was swallowed... checked his mouth and it was gone! That helps so much...

We have started our new routine of using a ton of lotions (unscented like aquaphor!)..accutane causes severe dry skin.. peeling.. and cracked lips! It also causes headaches and mood swings.. ie. temper tantrums! I am not sure I will be able to tell if it is the pill or just the fact he is 3!

He has a ton of energy!! We have spent a lot of time outside playing baseball, golf, riding bikes, and driving his F150! The weather has been great... such a difference from NY!

I will update on Thursday after we go to the clinic...
Amy

Home Sweet... Jameston!

We had a great flight last night-- we ended up leaving Newark 30 minutes early!!! We arrived in Charlotte at 10:00-- Hayes, Grace and Maggie were waiting for us in the hanger! Grier was so excited he ran to them but stopped quickly because the automatic door did not open!!

During our stay at the Ronald ... Grier would "drool" over this playmobil toy behind the glass display--- He kept telling me he wanted that toy-- I told him we would see if Susanne's toy store (Black Forest) had it when we got back to Charlotte--- It was an ambulance(equipped with all the medical supplies!!) Yesterday-- he would not stop taking me downstairs and showing me this ambulance... so after a phone call to our "Charlotte family"-- they found the ambulance! Grier was so excited!! He has not stopped playing with it-- Due to the excitement of being at home and the new gift... is was a late night at our house!!

We start accutane tomorrow!! I hope the side effects are minimal... we will go to the clinic on Thursday to have the port accessed for the first time-- Hopefully the numbing creme will control the discomfort--

Thanks again for EVERYTHING-- meals.. rides for Hayes and Grace.. cards.. gifts.. EVERYTHING!

Done!

Grier finished his second cycle of 3F8-- and we have finished all appts. at the clinic-- 13 straight weekdays of being at the PDH!!! The amazing thing is he went each day with a smile on his face and no complaining!!

We are letting him sleep off the narcotics-- I hope he wakes up like he did yesterday with minimal tummy issues-- we are going to start packing and cleaning so we can head back to Charlotte tomorrow--- We will be back late-- Our flight leaves Newark at 9:00pm!

The front desk stopped us again to let us know we had a ton of cards and packages-- I know they will be glad we are gone!! Thanks to a few special groups--- Olivia and her friends at Sharon Elementary...The Covenant Miracles... Steel Fab major league team...First Presbyterian Weekday School.. Covenant 4's.. And Jeff Gordon #24 and his team--

We are glad to have all these procedures behind us and are looking forward to a little time at home!

Hearts.. Hearts.. and more Hearts!!

Happy Valentine's Day!! We had a really nice day at the hospital!! :)
3F8 went as well as it can--- he did have more than normal pain--- it is really amazing how each day is so different!! He slept for awhile at the hospital-- woke up with a terrible headache and then we left-- He finally came out of drug induced haze today at 7pm!! It has been a long time(since Sunday night) that I have heard his sweet voice talking about cars and such! He got a new "blue blackbird" car in the mail today and he thinks it is fast!!

Today we were told the next phase of keeping Grier NED (No Evidence of Disease)-- he will begin taking accutane-- he will take these pills for 14 days and then have 14 days off-- I guess I better start thinking how to get him to swallow pills! We will be back in NY the 10th to start the next round of 3F8-- Hopefully the two treatments together can keep NB away for the next 5 critical years-- NB relapse is so common! We will have to go to our clinic at home for blood work next Thursday-- but at least we will be at home!!

I had to laugh today about all the mail!! The front desk at the Ronald has been overworked with all the cards and packages coming to room 807!! They have hinted that all week to us as we have picked things up! We have so many cute cards-- and lots of hearts everywhere!! Thanks for thinking of him ! Grier passed out some Valentine's today to the nurses and a few friends!

Tomorrow is the last day of this cycle!! And he will have the needle removed from his port and be free from a line hanging down since March 30th!! I can not wait to see him without a tube!!!

Thanks again for everything--- AND before I forget... Thanks Andrea and Sean Smith for my surprise!!! I can not wait to use it-- I have walked by BLISS a lot during our walks and know exactly where it is--- That was so nice!!!

We climbed a few hills today!

AHHH! Wednesday-- we made it over lots of hills/mountains today!! First was the awful weather-- pouring down rain + snow on sidewalks and streets = a huge slushy mess that made a 6:45am walk to the hospital not fun!!! And killed my running shoes!! Yes-- I know rain boots would have been the right shoe to wear-- but when you are traveling this way-- you pack light!

We got to the hospital--ready to hurry up and wait for the right folks to take the ethanol out of his line-- (he is in a study... so you read that right!! They lock his port with ethanol in the hopes to prevent line infections instead of heprin) Well-- they did not come in until 8! AHHH! They finally got there and we were ready to get the white medicine-- AND the port was clogged! OK-- Grier was very patient while they worked on the tube hanging out of his chest--- so I was taking his lead-- After many attempts-- the look came from the team-- "we need to change the access needle to see if that was the problem"-- AND this was going to be the first time-- so they decided to use gas for anesthesia -- then they could work on the port and do the bone marrows at the same time-- By 9:15--all of this was underway!! Now -- that is enough for one day but we still had 3F8 to go!

3F8 went as well as it can -- I guess!! We left the hospital and he sleep until 5pm at the RMDH!! And now we are trying to get him to eat---!! He did pack Hershey kisses to eat this morning after the "white medicine" --He only ate 1 and lost that soon after the antibody treatment was over!- We are trying to get him to eat something besides candy! All those narcotics are killing his appetite!

Happy Valentine's Day to Everyone!! Thanks for caring so much about Grier and our family--

ps-- I love seeing all the new people that have signed the blog!!!! Thanks!!

200th POST!

Today went much better in the world of antibody treatment--- we managed to get through the 50 minute infusion without a breathing or blood pressure crisis. We did have something new-- HIVES!!! He was covered all over his face and a little on his shoulders-- Again this is to be expected-- After he fell asleep we noticed his bottom lip was VERY swollen-- and even since we have been back to the Ronald he is still swollen in his face-- Hopefully that will wear off soon as well as the bad headache!

Tomorrow-- the plan will be different... Grier will have anesthesia first thing in the morning and have bone marrows done in 4 locations-- then we will head over to the 3F8-
This was suppose to be done on Friday-- but was moved to Wednesday--

Thanks again for all the cards and gifts--- He looks at them as he feels up to it-- so it takes a while to get to each of them!! Thanks to the kids at ETES in Mrs. Hayles, Ms. LaRusch, Mrs. Graybeal, and Ms. Riegel's classes-- (I hope I remembered them all) The cards were very cute-- And thanks also to First Pres Weekday school-- and Emily's preschool in Virginia!!!

This is the 200th post on gogriergo.com--- thanks to all that have left messages over the last 11 months-- They have helped us a lot--- And thanks to those that are "lurkers"-- (David Shroyers word!!!!) Go and ahead and sign the blog so we know who reads it!!

I almost forgot--- It is snowing here!!! Hopefully we will make it to Sloan without slipping tomorrow!!! It is going to change to ice tonight---

IF this is doing Great.. what is not doing Great?

Should I start by saying... I hate 3F8 Mondays... or I hate cancer--- or just both!!
Today was harder than the first time we did the antibody treatment--
It started with the brisk -9 degrees walk to MSKCC--then the dreaded finger stick!! That always starts the day in a bad mood-- Then we WAITED-- Mondays are very crowded because everyone is getting ready for their treatment plan for the week-- by 12:00-- the 3F8 started and soon after the puking started ( this caught us off guard-- the silkie, grey cat was ruined for the treatment).. then the oxygen problems and then the low blood pressure 55/36?-- all happened almost all at once--- He did not recover until about 6pm-- and we walked back -- and he just got up!! It is 8:31-- so we can say we had an eventful day!! And they said we had a great day!! REALLY???

We did get a call from Corporate Angels-- the first call was a flight for Monday evening at 9:00pm--- I told them .. NO thanks--I will be home by then!! And then they called back and had something for Saturday night @ 9:00pm-- not my ideal plan-- but I told them we would take it-

Well-- As I finish this blog I am happy to report Grier is at least sitting upright--!! He asked for a drink-- so he is gradually coming back from the narcotic haze he was in!!

Thanks for all the Valentine's!! When we returned from the hospital tonight we had a mound of boxes and cards by our door!! He has had a good time opening the cards-- and enjoying the gifts-- his new favorite is Valentine's Day candy corn from Dylan's candy store!! And Cars fruit snacks-- That may be his dinner tonight-- whatever he wants .. right?
sorry for the scattered thoughts-- I must be tired!!!
Amy

Another weekend is over in NYC--- Not much to report!!
Grier has been a little sore from the mediport surgery--- He is not thrilled when it is shot time-- and he seems to have no appetite today-- maybe he has some side effects from radiation-- who knows??!
The weather is bitter cold-- we had several snow showers during the day--- and tomorrow morning the temp is going to be zero and windy!!! It will be a brisk walk to MSKCC!
We go to the clinic around 8 and will expect a LONG PDH Monday--- Hopefully 3F8 will start before noon so we can get back to the Ronald--- This is the week I dread the most so let's hope it goes by quickly and without complications--
We are not sure about coming home on the 15th-- it may be late on the 16th-- I really hope a late Friday corporate angel flight comes up-!!

Perfect Timing !

Today started before the sun was up just like the last 7 days!!! And with Christenbury luck-- we had a glitch!! Grier was in the IV room to be hooked up to his IV pole--- and they went to flush one of his lines and noticed it looked like it was "dirty"--- after washing it off with an alcohol pad--- it became clear the white tubing was leaking because it had a cut in the line--- After almost a year the hickman he had finally worn out!!!!!! I was a little panicked at first because of the thought of an infection in the blood stream-- but he did not have a fever-- they put gauze on the line and used the second tube-- Whew!!! I also thought they were going to have to start an IV in his arm!! So.. It was a very good thing they were pulling that line today--- Perfect Timing!

Grier finished radiation - woke up from anesthesia and sleep for a bit in his stroller--- then we took him to the OR around 9:30 to be sedated again for the mediport surgery-- he was done and in recovery by 11:30-- and we went back to the PDH for a quick check up-- then back to the Ronald by 3pm--- He is doing fine-- he does not like bandages-- so seeing the two new ones on his chest is a big deal--- but we quickly got him dressed so they are out of sight out of mind--hopefully the soreness will be controlled by the medicine--

We have the changing of the guard tomorrow--- Jeff comes to NYC and my mom is back in CLT!!! We will have a low key weekend --preparing for the 2nd round of 3F8-- And then hopefully home by the 15th!

TOMORROW is the last day of RT!! We are very excited--- it will not be an easy day due to the surgery for the mediport but at least we have radiation behind us for now! We met with the doctor today and she said everything looked good-- and she didn't see a need to see us again unless it was in the cafeteria or the elevator!! That was a nice thing to hear-- I wish all the doctors would say that TODAY!!

We will have to be at the hospital tomorrow morning at 6:45---- And he will have his surgery after his RT-- they will wake him up from anesthesia and then do it again around 9--- he is suppose to be the 2nd case in the OR-- We will see... we all know the clock works differently here!!

Got to go watch reality TV--- thanks for all the tips on Survivor--- I need help keeping track!!!

Until tomorrow-
Amy

PS== Grier got to see the dog that won the 2007 Westminster Dog " Best in Show"-- He said Tucker would like a friend!! I laughed-- I have been there done that!!! Do not get any ideas Jeff!!! check this link out--- www.angelonaleash.org

I do not need a scooter.. I have an IV pole!

Grier did fine today as usual-- we had an addition to our schedule-- after the first round of RT (Radiation Therapy) we were told to go back to the PDH and WAIT to see the team from surgery!! Oh yeah-- he is having surgery on Friday!! We talked about the new medi-port he will get and the time line-- no major surprises except the surgery could take 2 hours-- for some reason I do not remember the first hickman taking that long--- And I was quickly reminded that I was not in a good state of mind last March 30th to remember those details!!

Our plan is to go to the hospital at 6:45 on Friday morning--- no worries there since I am now accustomed to waking at 5:33! Yes-- The noise happens every morning! Then he will check in with the team and then head down for RT--- HOPEFULLY they will work it out so he can stay asleep and head up to the OR right after RT!! Otherwise .. they will do the quick wake up we have been doing and then we will wait until 9-- to go to the OR-- he will then recover in the PACU!! Susan can you believe it?--- we actually will recover in a room!! After that they will send him upstairs to the PDH to be checked again-- and if all goes well sent back to the RONALD!! It will be a long day to say the least--

Tomorrow is the last day of double sedation-- so it is something to look forward to!!

Thanks again for the notes and pictures--- And the shirt with his name on it from Alphabet Soup!! Thanks Dianna!!! You know I am in withdrawal from shopping!! I am told it is a southern thing to have things monogrammed-- OH well-- I guess he sticks out in NY!!!!

Check out the picture-- that was taken this am at 7:00am!!! He likes to ride the IV pole from the PDH to RT---Can't wait till we ride a scooter at home instead!!!

I forgot to add --- Betty and Mary Ellen-- Jeff has bracelets!!! Tell me what you need and we can get them to ya!! And if anyone else needs one too--- just let me know!

CHECK THIS OUT FOR LCH (Levine Children's Hospital)-- Grier played this at MSKCC and when I went online to see how to donate one in honor of someone... I found out there was a contest and LCH was listed as the NC hospital-- Vote for LCH to get a game system-- they are fun for the kids!! You can Vote once a day!

www.colgate.com/showthelove


Colgate-Palmolive and Starlight have teamed up again this year to help seriously ill children and their families cope with the pain, fear and isolation of illness. The outpouring of support from 2007 Colgate-Palmolive and Starlight national online Fun Center voting contest was wonderful and resulted in an overwhelming success, with more than 2 million votes cast. This year, Colgate-Palmolive is awarding all 30 participating hospitals a Starlight Fun Center – a mobile entertainment unit that kids can enjoy at their bedside or anywhere in a hospital setting.

And now you can make an even bigger difference. The ten hospitals that receive the most online votes will receive two Starlight Fun Centers, generously sponsored by Colgate-Palmolive. That's double the amount of fun and laughter.

Go www.colgate.com/showthelove to click on a hospital and place your vote. One hospital in each state listed will receive a Fun Center.

Super Tuesday, Fat Tuesday, Giants Parade...

Today was the same as the past days--- I will spare the time details with you-- They were the same! Grier did well during both treatments-- and took a nap today after the 2nd one @ 1:30--

We watched the NY Giants Parade on TV-- thought about going but could not see how we would get back to the hospital in time!! Grier and my mom had their own parade for Mardi Gras in the room-- throwing beads to each other--- And we have been stopped by every one campaigning for their candidate while we were walking all day today!

We finished the day with checking the mail!!! Thanks to everyone-- I would love to write everyone a thank you but I no I can not do that right now-- So... I will write in this blog as a thank you to you all!! We also went to dinner-- at Southern Hospitality ( Justin Timberlake's resturant??)--- Grier wanted corn on the cob-- so I looked at menus and thought this would be the place-- well... we got there and they have a new menu and took it off and added creamed corn--- HE loved it-- He shared with my mom and I and kept saying "This is a great dinner!" So, we were so glad he had a good dinner--

We are done with 9--- and have 5 more to go!! I guess we will find out tomorrow when he will have surgery to put the new port in-- We also start shots tomorrow AGAIN!!! The only good thing is that he will get them under anesthesia by the nurse for the next 3 days! Then I will take over on Saturday-- Today marks one week here-- It has been a long week-- I hope the next few weeks go by faster!

We made it through another day-- and YES-- we are half way done with these radiation treatments!!
This afternoon was hard-- we went back to the clinic at 1:45-- like they said.... and were told to wait at least 20 minutes to be"hooked" up to an IV pole-- Well-- by 2:15 we walked back to the room to see if they were ready--- and we still had to wait-- Our procedure was scheduled for 2:30-- So I had a feeling we were not going to make that time-- and we didn't-- we started around 3:15 and left the hospital around 4:00-- he ate a Nutra Grain bar in a groggy state as we headed to his requested spot--- for Breakfast, lunch, and dinner!! Johnny Rockets!! He ate a little and danced in the booth to the songs he was playing on the "juice box"!! He was funny tonight when Jeff asked what he has for dinner while talking to him on the phone... he said.. wait... I did not have dinner!! I said yes we did we went to Johnny Rockets and he said ..no.. that was lunch!! We are way off our schedule-- can u tell?
Tomorrow will be the same-- he is already negotiating about when and what he can eat-- Try explaining to a savvy 3 year old--- no.. you can eat after the second dose of the white medicine ( which is 6 hours apart from each other) .--- And he has no concept of time!! FUN!!!

Thanks for all the cards, gifts, ecards.... they are great!!! Please remember small is best!!! Everyone is so thoughtful-- I love reading the cards--- and hearing from folks I have not been able to see in a long time--- I have had a few questions about mail being returned to them--- RMDH does not save mail-- even for a few days--- so they return to sender when we check out-- Crazy but true--- We are hoping to check out this time by the 15th or 16th--- but it could be as late as the 18th!!

Here is a quick recap of the weekend----
Saturday we woke up after a long night with broken sleep--- Grier even woke up at 6:30am-- Every other day I was waking him up to leave for the PDH around that time!!! He almost fell out of the "magic bed" but was saved in the nick of time!! We ended up walking to the zoo and then walking around central park--- then came back to the ronald late that afternoon-- LOTS of walking!!
Sunday was much of the same--- there is a LOUD grumble in the walls EVERY morning at 5:33am!!! Who knows what it is??? I have only heard it in this fine room ... 807-- It woke Grier up and he asked what that noise was??? Then he could not go back to sleep--!! We finally got up and going late morning-- headed to Lenny's for a bagel and then went to Times Square-- While walking we hunted for a NY Giants shirt for the boys---YOU would not believe how hard that was to find-- we finally made it to Toys R Us-- to buy a basketball goal for the door--!!! Then we headed back towards the Ronald-- but had a detour after a tip on Giants gear-- Still no luck so we headed home-- we were starving and Grier did not want to eat ---just wanted to go play with his toy!!!
We watched the game--- Grier fell asleep!!! And after the game was over we got to hear ALL of NY rejoice in the streets!!! It was entertaining!!! Go Blue!!!
We woke up this morning after another night of broken sleep-- Grier almost fell out of bed again--- !!! We got to the PDH at 7-- and got back at 9:20--after a brisk walk in the rain and SNOW--- It all went fine except he woke up from anesthesia really bad!!! He screamed and cried for an hour and nothing could make him happy!!! He just wanted a Nutra Grain bar!!! He finally settled down and packed a Nutra Grain bar in his stroller so he can eat it after the second time (2:30) he gets his WHITE medicine!!! So... here we sit waiting for the clock to get to 1:30 so we can head back to the PDH and get on with this day!!!!

5 down 9 more to go!!!

Today was the same as yesterday-- all went well!!! Except the weather-- It has been raining here and very windy!!! I heard that was the case in CLT too!!! Rain is fine unless you have to walk 6 blocks each way to the hospital!!!

Thanks for all the messages -- it gives me something to read while I am here!! Also-- Thanks to my Louisana family--- for the KING CAKE-- I had no idea what that was until I read the piece of paper--- Grier said it tasted like a cinnamin roll!! It was yummy and we plan to share some with our LA friends across the hall! I have a picture of him wearing his mardi gras beads- I will post that later--

I am glad we have two days off from the hospital routine--- and the weather is going to improve so we can get out and walk around !!

Go NY Giants--- I guess we are fans now-- !!!!!! When in Rome do as the Romans... right??