Happy Halloween-- Today was a little hard to be reminded of that over and over-- Grier had big plans to be a lion-- People have been dressed up for days here in NY-- And today I saw a Dad dressed as "Winnie the Pooh"-- they were walking to the hospital and people were actually stopping him to get a photo taken with him on the street! The PICU had people in and out of the room dropping candy in a bag for Grier-- and a few dogs came by dressed up too- Very different than our normal Halloween at home- Grier really did not seem to care about any of it-But he does know today is Halloween--

He is doing OK-- I think the sedation meds started to wear off yesterday and he is dealing with pain as well as anxiety-- we are back to freaking out when anyone in a white coat comes in or nurses come too close-- And he is doing a strange humming noise- But the good news is... he went in an ambulance again to the step down unit at Sloan-- They called it POU-- (pediatric observation unit) AKA "POO"-- It is a quiet room so I hope that helps calm him down -- NY-PRES was like grand central station with the family in the next curtain-- they must have had 20 visitors in and out all night and day- But I will have to say that the staff and hospital is a well-oiled machine-- That was a very pleasant experience-- They kept telling us he is doing very well for the surgery he had-- that is why they moved him so quickly-

I would like to stay here in POU as much as possible since the next move is back to semi-private again-
I did take some pictures of the ride across the street -- will post later when I am back at the ronald-

That is it for now-- Jeff just brought dinner to the POU-- !! I bet he will see some interesting characters on the way back to the Ronald tonight-- NY loves Halloween--!!

He is doing really well-- the doctors are surprised how fast he is progressing- He still has a fever- They say this is normal for about 48 hours after surgery. He is off the ventilator and has talked a few times. He is wiggling his toes. He responds when you ask him questions-- usually by shaking his head yes or no or opening his eyes-- Almost always talking about Hayes and Grace will get him to open his eyes-- as well as if he wants to see if ha has a package at the Ronald! They sat him up this afternoon-- and did some chest beating and had him cough-- That was not so much fun to watch! But it helps his lungs stay healthy- Grier is very swollen today-- they said he would be but he does not even look like himself this evening-- We had a great nurse today, Emily was everything we could have asked for in a PICU nurse! She took great care of him and answered our questions- The doctors think he will be in PICU until Thursday if all stays they same-
Jeff and I are on a tag-team schedule-- he is there tonight and I am at the Ronald-
Our Charlotte family is home-- they lucked out and had a home cooked dinner made by Ross- Sounds like Bill learned about Hannah Montana-- And school is on for tomorrow-- Good thing we are getting used to the new routine--

He is doing so well -- doctors call him an "overachiever"

The threesome just left for Laquardia and I just walked back from the hotel to the Ronald-- with hopes of showering and possibly taking a nap!! But Jeff just called and Grier is off the ventilator and he needs his lightning McQueen PJ pants!! Oh my-- what a request! I am off to walk back to NY-Pres to drop those off- and the gray cat!

I have gotten a ton of emails but just can't answer them all-- so I am going to update some questions on this blog later-- after I sleep and eat lunch!

So far so good in PICU-- nurses are great and I hope we stay there at least 3 days-- before we go by ambulance back to Memorial! The next several days will be really tough-- we will be trying to manage pain from this LARGE incision -- have not seen it under the bandage but when I do a chair will be close by!! It must have taken the surgeon over an hour to close him up-- The tumor was removed and it was wrapped around the aorta, diaphragm,lower spine,-- lymph nodes were removed -- Also biopsies were taken of the liver- Actual surgery was 12-9-- start to finish- After the consent was signed for the neurosurgeon -- the surgeon went back in and took a second look for more NB that could be hiding-- he said he removed some nodes the during the second look- That is why we came here-- He is meticulous-

Grier had a pretty stable night-- He did get a fever during the night but they said that was to be expected after a surgery like this- He also received blood and remained heavily sedated -- They are weaning him off the ventilator as I type-- so by this morning he will wake up and be mad as I am told-- they want that to happen and then they will pull the tube out-- They will use a oxygen mask or a cannular? Should be interesting- Susan knows how he loves that! They asked how he did with either and I laughed and said we did blow bys-- because he freaked out so much! Anne -- Do you remember holding that tube all night?

We have not heard any results of biopsies -- or marrow results-

I can only get to caringbridge from NY-presbyterian so I can not wait to go to the Ronald to read the blog- I also have my phone off-- no phones in PICU!

still looking up-
Amy

ps- Hayes, Grace, and my mom leave today at 2:45--


I will update later with better details-- I am in a hurry this am!

update

This message is from Amy at 9:25 p.m. Grier has now been transferred across the street and has checked into the PICU. The surgeon felt that the surgery was successful. It'll be a long night of watching Grier very closely. Amy is not sure if her laptop is allowed in the PICU area. She'll try and update later.

The beeper went off around 4:30--- and Jeff and I knew it was going to be really good or bad-- it seemed to early to be done-- We went to a room and was met by the nurse liaison who was also beeped-- She quickly tried to help ease our worries-- She went to see why we were beeped-- When she came back she found out Dr. LaQ- had to call a neurosurgeon in to help with some small areas on the nerves of the spine-- we had to sign a consent form for that--
All is finished now, the tumor is out and they are closing him up to get ready to be transported to PICU across the street-- I will ride in the ambulance with him AND JEFF WILL WALK ACROSS TO MEET US-
So, from what we can tell the surgery went well-- and we hope and pray that he does not have any paralysis from the area on the spine-as there always is a remote chance according to the doctor- It is still going to be a long road for recovery but we were prepared for a 8-12 hour time frame and it turned out to be much less- We will update later--

Thanks for all the thoughts and prayers-- we still need them-

update #2

He has made the incision and Grier is stable-- Nothing has been removed yet- Next update around 5pm-
Jeff went back to the Ronald-- he wanted to take the stroller back-- so it is me ad my mac sitting here in the very busy waiting room-

Grier's biggest complaint today was taking off his Lightning McQueen PJ's to put on a circus hospital gown!!!

Thanks for all the prayers so far-- we feel at peace sitting here- and know this had to happen and it turned out to be better sooner than later-

Update on Grier- from Amy & Jeff

They took him back exactly at 12-- how ironic that was the time we choose to all stop what we were doing and pray-

Jeff and I are hanging in -- we went for a tour of NY Presbyterian Cornell PICU- we do not know how long he will be there- just like we do not know how long the surgery will be-- Dr. LaQ-- says 'how ever long it takes'

We have had our first update from the nurse liason-- they had not started yet-- just asleep.. putting all the tubes in him.

He was a real champ waiting so long this morning-- he kept asking when he cold push the 'magic milk' -- He was so spoiled at CMC by Caroline and Dawn -- They always let him push syringes!!! He pushed the versid?? and he got a little goofy!!

That is it until we hear more-
Amy

1:00 update

They finally took Grier back around noon. Jeff & Amy are touring the PICU.

Update from NY

10:30 am - update from Amy in NY:
Grier is still waiting on Anesthesia as of 10:30.

I am looking up!

We have had a pretty busy weekend--- Saturday was almost a wash-out.. but it did not stop us from going anywhere- We went in out out of a few shops-- Lenny's for lunch -- then we ventured over to my mom's swanky hotel-- and then back out in the rain! By afternoon the rain had stopped and we were having "normal" family time at The Ronald-- everyone was even fighting!! Grace and Hayes stayed with us last night-- Grier and Hayes on the pull-out and Grace and I shared the twin!! And Jeff had a bed to himself!

Today we woke up late--(8:00am!!!!) and then went to get breakfast and my mom-- Her hotel is 1 1/2 blocks from the zoo so we went there this morning-- That was a lot of fun-- we took a bunch of pictures-- especially of penguins! Grace is doing a project at school on penguins. They also had a lot of activities with a Halloween theme at the zoo-- everyone seemed to have a good time- We walked up 5th and did some shopping at American Girl-- ( I actually was trying to get Grace to want something but she did not want anything!!) We had a great lunch at John's Pizza near times Square and then went to Toys R Us to ride the Ferris wheel-- just Grace and I did that-- everyone else watched.

Throughout the day we had to give meds at 11, 12, 4, 5, 7, 8-- so that was a little reality check of why we are in NYC-- And then at dinner the nausea I was worried about all day hit Grier fast and hard!! He and Jeff went back to the Ronald and I attempted to finish dinner with the rest of the family--

So, we are in the home stretch of this waiting-- It is bittersweet-- we came here for a doctor's surgical expertise but it will be hard to hand him over tomorrow- I should be a pro at it by now but tomorrow is so much more complicated and life threatening- But we know lots of prayers have and will be said to help us through it-- Tonight was hard for H & G since they thought they would be staying with us again-- so you can imagine how they felt hen we told them we all could not stay together tonight-

we have heard about church today and tomorrow at the chapel-- Thanks for caring so much about our family--I have done a lot of looking up today asking God to take care of Grier and I know all of you have done the same- we will get through this and hopefully beat neuroblastoma!

I hope to do updates tomorrow-- but please do not call if you do not see them-- It may be late in the day-- I am not sure what to expect- we will go by ambulance to PICU at NY-Presbyterian Cornell and I am not sure what the visiting will be like in the PICU but we may have to come back to the Ronald to sleep-

new pictures are on the caringbridge site-- www.caringbridge.com -- grierchristenbury



Grace and Peace- or as Grier would say.. "next years Christmas and Halloween"-- we have no idea why he says this but that is what he tells people when he leaves instead of Goodbye-
Amy

An addition to the articles!!

I want to mention something in the blog--- I am very thankful for the article that has been in the neighbors section and the follow-up article about Sunday's amazing celebration. But they keep forgetting a group that has been very supportive to our family -- that is First Presbyterian Weekday School-- Grier loved going to school there- and still gets visits from his teacher, Susan Leary. He actually is enrolled right now--- but has never met some of the friends in his new class-- we hope to make it one day this year. I get updates about school happenings and it makes me feel a little like a "normal" preschool mom-- and Grier gets mail from families and teachers he has never met from there-- The cutest thing was last week when a card came in the mail from little girl that was in his class last year-- she had drawn a picture for him and had a photo on the card of herself-- I asked Grier if he remembered who this is and he hesitated for a second and then said-- That is Ansley! I thought that was pretty good since he had not seen his preschool friends since the end of March- I have tried to give up our spot and I am repeatedly told -- there is a spot for him as soon as he can come back- Thanks FPWDS--for the little sense of normalcy, cards, visits, gifts, blog comments etc--

A friend suggested having a time to stop and pray on Monday for Grier and his surgical team--- I think that is a great idea- I still think about Hannah's time we had for her! Surgery will start around 9am--??? we are told the first 2 hours not much is happening-- So.. how about noon~? Thanks Staphanie G for the idea!!

The sun is coming up and Hayes, Grace and my mother will be here soon-- we will have a wet NYC day but I am sure we will have fun!

On a side note-- I hope the weather is beautiful in Charlotte-- I hear there is a big wedding today-- Sarah, Mary Ellen , and Elizabeth (and Steve :) )-- we are thinking of ya'll today-- I can not wait to see your wedding picture in the paper!! It seems like yesterday when you were in 5th grade at Park Road!!! :)

A day of waiting and then a surprise!

We set off for the hospital this morning around 7:40-- we were told no later than 8:00-- This is getting a little old-- we just waited around until 10-- then they gave him anesthesia and started the MIBG-- after that was done he was wheeled up to the procedure room and was in Line for his turn for bone marrow aspirations-- He woke up not very happy and we were ready to leave when we got a phone call-- It was the nurse practitioner from Dr. LaQuaglia's office-- she wanted to see us again-- we met him yesterday-- So, we went over there after he settled down a bit-- When we walked in they said Grier could have surgery on Monday- This was a shock to us since we were told yesterday the schedule was booked for at least 4 weeks and into January--So, the whirlwind started again-- Grier was more than ready to get out of there and we were busy answering questions and checking him over-- There is one thing that will stop the surgery-- his counts are a little low-- so they started neupogen today again -- but they do not do it like we do in CLT-- they do a shot--- and I have not given shots before nor do I want to! So, they inserted an IV type thing in his leg and I put the needle in that instead of his skin-- It was and is very painful-- as well as the soreness from the bone marrow aspirations- He has had a day--- Today was much like the first day of CMC in March-- things going so fast and watching him scream in pain--not what you want to see your child doing!

About the surgery-- it is long-- we are told to expect anywhere from 8-14 hours-- the surgeon answers the time question like this-- "As Long as it takes!" Everyone here thinks highly of him and he has done this surgery a lot -- We are also told to expect Grier to be on a ventilator for a few days-- in PICU (across the street NY Presbyterian Cornell) And hopefully out of the hospital in 10-14 days- barring no complications- I am not going into too much detail because I am worried my kids may read it-- but we will need lots of prayers for the surgeon and Grier-- I will be updating on Monday as we get updates-- we should hear something every 1 1/2 hours-- Please do not call-- just look at the web page-- Recovery will be long-- 10-14 days?? Grier will need to get his lungs back in shape-- and wounds will need to heal-- We are once again in a quick time frame but we know this surgeon is the one we trust to do this serious surgery- We have listened to stories from folks from all over and tears come to their eyes talking about their child's surgery and the Dr.-- everyone says he goes to church at 6am before each surgery -- Some call him St. Mike-

Thanks for all the packages today-- it was like Christmas for Grier-- he had a good time opening things!! Little cards and toys are fine but the best thing would be to donate toys to ChildLife at Levine or the CMC oncology clinic in Grier's honor-- remember we have a little plane to fly back to Charlotte and we are living in close quarters! You all are so generous and I know everyone wants to do something-- so please donate books or toys to the new hospital or clinic-- even happy meal toys (unopened) are great for there prize drawer--

Grace and peace-
Amy

100 posts on this blog!

I can not believe I have posted 100 times on this blog--! Who would have ever dreamed I would be a blogger? Not me!

Today went fine -- we raced over for an 8:00 appointment.. not to be seen until 9-- And then left for awhile and came back at 2:00 for a quick injection of radionactive dye but they did not call us back until about 3:30-- When the man said "Grier Christenbury" ... Grier yelled ..."that is me" and hopped up to follow him! The waiting room was packed with people ( kids and adults)-- and kept getting more crowded as they got behind schedule- We met a family from Charlotte who has been doing this journey for 5 years in the waiting room- That is about all we know today-- still too soon to give out more info!

It rained most of the day-- so we walked around our "hood"-- I am almost embarrassed to tell you we have eaten at Lenny's -- 4 times!! Grier wants to go their every lunch and get turkey!! We did breakfast there after the early appointment today so that is 4 times!!! We did venture out to a BBQ place for dinner tonight-- Jeff need some sweet Tea~ and it was pretty good-- even Jeff said the greens were good-- Grier was thrilled with corn on the cob and chicken!

Tomorrow we have to be at the day hospital by 8:00 am again-- This time it is anesthesia-- and the MIBG scan and the dreaded bone marrow aspirations-- this will be done in 4 locations-- front and back hips-- I hope he is not in too much pain this weekend since we will have visitors on Saturday--

We have a flight to come home Wednesday night-- we are also waiting to see if they can get us home Tuesday instead-

Thanks for all the emails and blogs-- we are missing Charlotte-- I even called Dr.Longee today to ask a question-- It was good to hear some familiar voices at the clinic- that know our family and Grier-

ps-- Jeff needs to thank the writers of Seinfeld-- because without that show he would not know anything about NYC :) And he swears he spotted Bo Derek when we were on 5th avenue-- :)

one day at a time--
Amy

Another day of tests-

Today was a busy day in the rain-- we started bright and early with Grier-- actually we were negotiating around 8am -- he needed to drink an 8oz glass contrast for the CT scan--! He got it all down and we headed to the hospital around 10-- we had to be there for fluids-- so you walk around with an IV pole of fluids for a few hours while you wait to get your scan-- At 11:45 we headed down to radiology and waited for anesthesia-- Grier was quiet-- people just cue up in the halls-- They called his name at 12:30 and we went in and he got his sedation for the scan- 10 minutes later he was done and awake-- they handed him to me and off we went! He was starving since he had not eaten since the night before at midnight-- so off we went for another turkey sandwich- Thank God Jeff is here-- because Grier really wants him instead of me-- and Jeff is chatting with everyone while I am just dumbfounded by what I am seeing and hearing-- I do better on the outside of the hospital-

We went to dinner tonight at John's Pizza-- Thanks for the tip-- Will and Anne!!!
Tomorrow we have another day of scattered appointments--


Well-- the Red Sox are on--- and I am going to try to change it!!! Sorry Michelle!! I think I will watch Private Practice-- I have not seen enough medical stuff today-

Thanks to everyone helping out at home-- especially my mother who has taken on full-time motherhood again-- but this time with two kids! Grace is having a hard time-- Unfortunately, cancer is taking the innocence of childhood from my other two kids as well as Grier-- but I hope they learn how generous people can be and how caring total strangers can be with this horrible disease as well-

Day one at MSKCC

LOOK at Grier's caring bridge site for new photos-- can not figure out how to add a lot of pictures to this blog!


We left this morning and got a quick breakfast before we entered the Hospital-- We went straight to finance as they call it- I would say more like patient registration-- then we waited to be taken back to get labs drawn-- they must have done 10 tubes of blood --- good thing he has a hickman-- no pain!

Then we met with the social worker-- and then off to meet with Dr. Kushner-- He was very good with Grier-- but Grier was over the whole talking to others at that point! We had been there for a few hours by then-- He did OK with the exam-- freaked when he had to lay down on the table-- but other than that he did fine- A lot of info was thrown at us and I am not going to speculate on anything until they do their tests- We were overwhelmed -- but I am going to wait until Friday when we meet with him again to see what he thinks- The funny thing was everyone loved his shirt today because it had his name on it and they could remember it!

The whole cancer center blew my mind today-- it is amazing how many kids were in the day hospital-- they were busy being tutored, playing in the playroom, walking around with IV poles--etc--- And most looked like Grier-- I am not talking about a few kids-- there were at least 50 I saw and this was a light day! Then there is a hospital for inpatient too--- Why there is not better funding for childhood cancer in our country is a good question-- You hear on the news about how breast cancer and prostate cancer rates are going down-- that is because of funding-- It is sad to see all these kids doing more aggressive treatments than most adults-- with little research funding for better treatments! Sorry-- I had to add that in!

After we finished we got lunch at a great sandwich place-- Lenny's?? Grier had his usual-- turkey, provolone, and tomato! Then we walked back to the Ronald and changed shoes so we could go on another marathon walk-- We were in a hunt for a baseball bat-- to match the ball we bought at the Mets store yesterday-- Well-- we found one!
Grier napped on the walk and he woke up as we left St.Patrick's-- Jeff and I went in as far as we could without being searched!! We had to go back because we needed to start this 4 hour urine specimen-- OK-- this has been a pain in the rear-- we are stuck here in the room and we are bugging him about peeing in this cup and then we transfer to another contraption-- and have it on ice since there is no fridge! So, dinner was take out tonight-- Chinese!! Grier read his fortune and he said-- " It was time for him to go home.. and play.. and go to maggie's house!"

That is my longest post ever!!! I did not even cover half of what happened-- only one more hour of collecting and I can relax a little better!

We walked and walked and walked!!

We left RMDH around 10 and set out for a quick breakfast--- found an Amish Bakery-- scones, muffins etc.-- perfect to walk with as we headed to FAO Schwarz--We are on 73rd street in betwen 1st and York-- we were headed to 5th and 60th??? We made it!! Passing central park-- looked at the zoo from the street and many other things-- then decided we woud walk to times square--- that is 42nd street and ??? For all of you that do not know-- it was a long walk-- we made it back to the RMDH by 4- and we saw MSKCC on the way-
Grier added another stuffed animal to his collection-- an elephant-- ! I could not talk him into the Ferris Wheel at Toys R Us-- and he slept thru the visit to Dylan's Candy Bar!
We just got back from a quick dinner around the corner-- and now we are going to settle down for the night-- I hope it is better than last night-- Jeff and I did not sleep well--! Grier is on a pull-out and Jeff and I each have a twin!
We begin our day tomorrow at 10-- at MSKCC-- not with the doctor but the finance office!! :) After we meet with them we will get to see the Doctor! (not the surgeon) Too bad that is not reversed--!

The news just said rain in the forecast for tomorrow-- so it looks like we will get our first taste of walking in the rain!!


Thanks for all the emails-- and photos from yesterday! It really looked fun!
We are missing home but knowing we get a visit this weekend will make it easier--
Wish us luck tomorrow in the day hospital-- I hope he does as well as he does with Dr.Longee and Dawn and everyone else at clinic!!! We told him today that we were going to visit Dr.Longee's friend-- he seemed fine with it but we will see when we actually arrive how it will go!

We are in NYC!

All went well today as we packed for this trip-- I would say vacation but that it is NOT! We had lunch with family and friends and then said our Good-Byes-- Grace had a hard time but I think she is doing better-- Bill drove us to the airport and waited for us to board the Wachovia plane-- Grier really liked watching the planes land and was really excited when our plane landed-- He had a great flight and everyone was impressed with his behavior-- they could not believe that he was 3! Thanks to Wachovia for sharing the extra seats with us!
We arrived in Newark and an old friend, Charlie Higgins met us at the hanger-- We loaded his car with bags and set off for the upper east side-- it was fun to catch up with him -- Thanks Charlie!!!
We checked into the house and that was the first time-- I was having trouble with my game face for Grier!! Grier had fallen asleep in Charlie's car and woke up and wanted to go home--- Actually I was right there with him-- but we made it through-- took our mandatory tour of the house and ventured out for a bite to eat-- I am not even goiing to tell you where--
We came back to the ronald and to our surprise we had a gift from The friou's-- Grier loved his taxi--and bear and I love the folder of places to get things that I am sure to need!! There were little pumpkins in the bag so our room has a halloween feel--
Needless to say I am exhausted and Grier is still awake!!!!!

Last but not least-- I heard today was great-- I have listened to a brief video of the Bad Daddies-- and seen pictures--Thanks so much-- We are overwhelmed by the support!!
I wil update tomorrow --we are going to explore a little--
Amy @ The Ronald!!

I am headed to bed and have not packed a thing!!! Does that surprise anyone??? I have been running around all day trying to make sure we had some Fall clothes--
Grier's IV meds end in 45 minutes... !! That is the last dose for this round!! Can you tell I am excited to get some uninterrupted sleep?

He has done really well today-- playing baseball outside every second he could-- Same comments from people that walk by-- He sure doesn't look/act sick! He is starting to tell people he is going on a "jet"-- that is a little better than telling people he was going on a flyboat!! If you do not watch The Wonder Pets you will not understand!

They finally had the ribbon cutting today at LCH!! We sure are going to miss some of the nurses on 7T-- and Kristen from ChildLife! And we will miss Susan in recovery-- I can not wait to see the 11th floor of the new hospital when we get back--

On a side note-- Another diagnoses of this rare cancer happened recently to a little girl from Charlotte-- She and Grier are about the same age-- I met her mom at the hospital last week. They were going through the first round of chemo-- She and I talked for awhile and she read the blog-- We are praying for Isabella to beat this so I hope you do too-- Here is her site-- www.caringbridge.com-- isabellasantos

Have fun tomorrow and we will be waving to everyone at Freedom Park from the "flyboat"!!!!

Amy

That was a fun day at the hospital!

We went to clinic at 9:30 today for platelets and possibly whole blood-- well he needed both! He is now "tanked up" for the weekend and the first of next week! When the transfusions finished the pumped "beeped" and he yelled "YES"-- and Dr. L thought that was funny!!
We left the clinic at 5:oo and Grier said-- That was a fun day at the hospital!! I started to laugh-- he was very entertaining today-- as you can see in the photo-- that is a costume he picked out of a box-- a Chicken !!

We are overwhelmed by the support we are getting yet again-- from friends, family, SimplexGrinnell, my Mother's office.. Rubins,Vagianos, Tolmie, Corsig,&Kerr, Covenant Presbyterian Church, First Presbyterian Weekday school-- the list goes on-- Thank YOU-- A special thanks to Jeanna Prevette, Mark Folk, the Bad Daddies, the middle schoolers at Covenant, Nancy Falls, Pat Taft, Derann Smoak for all the hard work that has gone on to prepare for Sunday in the park! I am sure there are people behind the scenes that I do not know about yet-- I can not wait to hear all about it and see the pictures!

I am adding something to the list of links-- I have a caringbridge page for Grier but I do not update it because of this blog--But when I am at CMC I have trouble getting on the blog because it is a blocked site-- I hope I will not have trouble in NYC but I will try to update both-- I am just going to copy and paste the same thing- So, if you notice no updates-- I may be having problems with the blog and check the caringbridge.com site-- Please leave us a message at either site-- we enjoy reading them! :) Here is the link...www.caringbridge.org/visit/grierchristenbury

Today has been very busy with phone calls and a visit from Kidspath-- Grier had his counts checked and it looks like he may need platelets tomorrow-- We will go to clinic to check again before we leave for MSKCC- We are able to stop the neupogen so that is one less IV medication I need to give!

I know there are a lot of people working on the party at Freedom Park this weekend-- it sounds great!! There is going to be an article in the CLT Observer on Sunday about Grier and all you guys that have helped our family since March-- I talked to the reporter today and I hope he understood what I said-- it was a little emotional for me to go back to March 2007-- I am sure I did not mention everyone that has had a hand in helping us at one point-- but know that I tried!! I am so thankful to the blog because he could read what has happened since then! He even knew "Dina the blogger"!!! Too funny-- Dina I can always count on reading a blog from you or Mary Ellen!!!

The good news-- I have talked to Dr. Longee again -- he called today with Grier's counts and to tell me the bone scan was clean-- I also asked him a zillion questions about things I was told last week by the Dr. on call that was alarming to me-- I am not going over all the info but basically last Thursday was like a 2nd diagnoses day for me-- I heard a lot of stuff about past scans and tests that did not match up to what I thought I knew-- Well-- it turns out I just need to go with what I thought I knew from Dr. L-- I am sure that confused some of you!! Sorry I am trying to be NICE!!!

We are going to leave Sunday on a Corporate Angel flight- I hesitate to write any of this since plans change quickly around here-- But our plan is to be in NYC until the 30th or 31st unless they tell us otherwise-- We had our appt. moved up a week but that was with everyone but the Surgeon. So, we will stay until the 30th to talk to him- Since that is who we have been waiting to consult with all along-
Right now, we will have an extremely busy week of testing... appointments... etc. And then on Saturday my mother, Grace, and Hayes will join us for a few days since school is out!!

Thanks to Jim Reid I will be able to read email on my laptop AND reply!!! Yeah!!

I am trying to get ready but right now I am playing catch up for the last 7 days !! Home Health will come tomorrow and check counts-- he may need a transfusion before we go--We are still on IV meds every 8 hours-- so glad that will be done on Saturday :) I wish I could show you the suggested list to pack-- it reminds me of going to summer camp-- It has some strange items on the list! Anne is probably laughing because I never really liked summer camp! The pictures look great and I am sure it will be fine after we finally get there!

quick update

I am going to to do some quick updates today to help ease my reply to emails-- For some reason :) I can not figure out how to reply to emails away from home- I can post to the blog but all emails stay in my outbox!!! I may have to get help from the apple store before we leave!!

Here is what we know right now--- we do have a reservation at the NYC Ronald McDonald House-- Since we do not know how long we will be staying we will be in close contact with the social worker from MSKCC to help adjust those dates as we need to-

We are still waiting on flight information from Corporate Angel-- Grier can not fly commercial right now because of his low counts. We hope to hear something soon so we can make better plans.

Grier is still sleeping this am-- I hope to leave CMC today but not mentioning it to him--- We will go home on the same antibiotic as we did a month ago-- and also continue the meds to increase his white blood count-

UPDATE #2-- @ 11:35 am
WE are home!! I have highlighted some things and if you click on them it will take you to their sites--

Bone scan went well today-- Grier is becoming a pro at all of this-- I wish that was not something he was good at doing! But-- he does it with no complaining and actually helps the nurses give the meds for sedation- he went to recovery after the scan and woke up very nicely-- Susan brought him yogurt covered raisins and he ate those while we waited to go back up to the 7th floor :)
We still think we need to be in NYC by the 22nd-- may leave the weekend before----

Jeanna and friends wanted everyone to see the invitation for the family picnic this Sunday-- Any questions...please email jeannas@carolina.rr.com
I know it will be a blast-- I hate the 3 of the Christenburys will miss it-

THANKS

Saturday was great-- Thanks to everyone that supported our Hopebuilders team!!! We raised the highest amount this year!! Actually a team has never raised 10K before!!! Thanks so much for supporting us! It was fun to see who was at the 5k-- I did not know so many people were planning on running or walking!! Now Hayes has the running bug since he ran his first 5k-- he keeps talking about doing more! Maybe one day there will be a Neuroblastoma 5k to bring more awareness and research money to find a cure for this rare disease! I am going to DREAM BIG as Roger DAY would say!!

A huge thanks to Hannah, Nancy, Dina, Beth, Isabel, Virginia and crew for decorating their hair and bodies with Go Grier Go!!! I posted some of the signs they wore-- I saw the emails before the race but was very surprised by all the funny signs and blue hair!


Grier is doing OK-- we are still waiting for his ANC counts to recover-- we need him to be a 500 to be able to go to NYC for all the tests. He will have a bone scan tomorrow at 11-- under sedation of course!! That will be the last scan done here before we head North-

Here's what I know so far-- They moved the date-

Grier needs to be in NYC by OCT.22nd to meet with Dr. Kushner- MSKCC will run a lot of tests that week we are there-- MIBG, CT, MRI Bone Marrow etc. Then we are hoping to get a surgery date for the first week in NOV. Right Now-- the only opening they have in their OR-- is last week of NOV---

So, we have a date-- the 22nd-- now we are trying to get there and find somewhere to stay-- I just wish I knew how long we would be there and if we need to stay until surgery date-- This is my first dose of NYC being more complicated -- I can not just get in my car and come home quickly as I have been doing for 6 months--

See ya'll tomorrow at the 5k-- Thanks for all the support so far-- we are getting ready to enter a harder phase!!

SINCE I AM LACKING IN TIME TO WRITE THANK YOU NOTES I THOUGHT I WOULD MENTION SOME HERE.... I KNOW I WILL FORGET SOMEONE-- SO PLEASE JUST KNOW JEFF AND I APPRECIATE EVERYTHING THAT EVERYONE IS DOING FOR OUR FAMILY.. PRAYERS, NOTES, MEALS, RIDES FOR HAYES AND GRACE, GIFTCARDS, ETC--
A SPECIAL THANK YOU TO COURTNEY CLARK, KAMI RUDISILL AND RODDY BROADNAX FOR THEIR HELP IN GETTING T-SHIRTS FOR OUR FAMILIES TO WEAR DURING THE HOPEBUILDERS 5K-- THIS WAS A HUGE HELP AND THEY LOOK GREAT-- COURTNEY AND KAMI DID THE ART AND RODDY AND THUNDERBRANDWORKS HELP GET THEM PRINTED-- THEY TURNED OUT GREAT-- THANKS SO MUCH--

some news...

Grier is hanging in there-- you can always tell he does feel that great when he does not ask to go home all the time-- :)

Tomorrow should give us lots of info about MSKCC-- We know right now that we have a tenative date of OCT. 30th-- to meet with the surgeon, neuroblastoma team, and patient registration-- That is trying to get pushed earlier so will know tomorrow- They also told me another list of things they needed and I was trying to pull that together from the tower-- almost got everything -- had the immunization record faxed to the tower!!! And made it to the birth certificate office at 4:25-- they close at 4:30--- but I have a birth certificate!!! Now, I just need to put my hands on his social security card!!!

On the way home from getting the birth certificate, Grace and I went to the new Target!!! Lots of cars there and we decided to see if it was open-- Well, it is nice- glad I went before the grand opening because we has the isles to ourselves!!

Hopebuilders 5K is Saturday-- If you registered.. don't forget your T-shirt at Run for your Life--

Thanks again for the meals this week as well as all the help with carpooling---

Day 3 at CMC-

Well it looks like Grier has an infection in his central line again--- I have not heard the exact name of the germ. The white line grew out something and the red line but they are not the same germ- Grier has a double lumen hickman~
His counts are still zero with zero ANC-- so his little body has nothing to fight infections. I hope to hear what the plan is when the rounding Doctor makes his visit-
Last Night went better than the night before-- it is all due to good nursing-- She didn't let the pump beep at all-- and was extremely quiet when she entered the room-- I bet she came in 20 times-- there is a lot of IV meds(5) going every 6-8 hours-- and then they do the normal stuff..like lab draws at 5am-- Grier slept better too- so it was a much better night-
Now the fun part-- Grier is suppose to do a sitz? bath because he says his bottom hurts-- it is not red but with an ANC that is zero his body does not have what it needs to go to the infection and attack it- so it will not be red or swollen until his levels go up- His freaks out when you change his diaper-- and this is unlike him-- last night at 11-- he woke up wanted his diaper changed and screamed so loud I had 3 nurses in here to see what was going on! Anyway he is not fond of the "bottom bath" as we call it- Today the goal will be to get him used to that to see if it makes him feel better. Probably too much info for some of ya'll-- sorry!

Wednesday morning

We had a long night last night-- He started with the chills around 5:45 and then spiked another fever yesterday around 6:45... And again around 2:00 the chills started and fever was 102.9 @ 3:30-- Everytime I looked over at him last night his eyes were open so not much sleeping was going on-

He got platelets last night and will get blood today-- I have not heard if the cultures came back positive yet-- I will update after I see the rounding Doctor-- unfortunatly it is not Dr. Longee this week-- If this is a long stay, I will be pushing for a new room-- This room is across from the nurses station at the beginning of the hall and is LOUD from normal stuff and traffic!!!

Fever!

We are in the tower again-- Grier spiked a fever this afternoon after he woke up from a nap--
Will update later when we know something-
Amy

Posted by Friends of the Christenburys......

Not feeling too well---

Grier is not feeling that great-- he is having a lot of bone pain from the neupogen. He does okay after you give him something for pain but you can tell when it wears off. His counts were taken today and he is at .1 for his WBC!!! NO Immune system-- He will need a transfusion for blood and platelets on Wednesday-- that could have something to do with his energy level-- He also has that "gray chemo" look-- I know it will get better but I am ready for him to be on the top of this rollercoaster we are on!
Grace and Hayes are doing great-- both did excellent on their report cards-- I can not believe how well they are doing with all that has gone on for the past 6 months-- We are lucky to have some great teachers!!
Hopebuilders will be here before we know it-- Thanks again to all that have donated to LCH-- 100% of that money will go to the new hospital-- It really looks neat--especially at night :)
I hope Grier feels better without a hospital stay-- he was making Jeff and I nervous last night when we thought he was getting a fever-- needless to say not much sleeping was happening at our house--just a lot of temperature taking!

TGIF!

Today was the long awaited Roger Day concert at ETES--- I wanted to take Grier since he loves the cd.. DREAM BIG ( this is a great CD if you do not have it!)-- so I hoped we would be here and we were-!!!- Not knowing what his counts are was the only thing holding me back but I decided it could not be worse than going to CMC with low counts :)-- We ended up going to the balcony in the auditorium--! Grier had fun and realized Roger Day was real!! Too funny-- He begged to go sit with Grace in the crowd downstairs so I gave in... as usual! It was too overwhelming down there so he wanted to leave early-- I forget that he has been so isolated for months that a large crowd makes him anxious! The picture is of Grace and her friend, Claire at the concert--- you can see Roger Day in the background if you look very closely--

I have added pictures to the blogs that were written while in the hospital--
I am trying to take pictures more often because it shows how well he looks! He is getting hair back. I am trying to get a good picture of his eyes-- the new lashes make him look like he has eye liner on! I also added some of Hayes and Grace-- they do not get talked about too much but they are doing good-- They are registered at SuperSibs--- I have had a lot of questions about that-- Grace got a letter from Mia Hamm as did Hayes but Grace thought that was the best!

We go to clinic today-- hopefully just for a weight check and other check up-- They will check his counts so we will know if he needs any blood products. I hope not since our appt. is late afternoon- Grier has already asked if he is going to sleep there?

A little jokester!

Home Health came today to our house to draw blood for labs-- the nurse had not been to our house since he had that high fever-- Well, Grier started "shivering" and I had to laugh-- he remembered what happen last time and made a joke! I didn't know what he was doing at first but when I saw him making himself shake and then grinning while she did his blood I thought it was funny!

On a sad note-- another child has died from this awful disease-- He has been on the news a lot today and if you catch his interview you will be amazed-- he is wiser than most adults at the age of 16-- Here is a link if you want to see it online- http://www.wsoctv.com/family/14254539/detail.html

We never met him at clinic but our go grier go bracelets were often mistaken for his-- His name is Brandon Elam and the blue/white silicone bracelet says ELAM-N8-CANCER---! I hope one day we can eliminate childhood cancer---

We made it home-

We made it home last night around 8pm-- Grier kept asking why it was dark outside when we walked to our car???
Everything is going well so far-- Home Health will deliver neupogen today and we will have to do that injection for the next 15+ days-- it seems to be longer each round of chemo-- we also will have to keep checking hemoglobin and platelet levels-- we will mostly likely have to go for a few transfusions this week and next-

Grier will most likely hit zero ( his white blood count) soon so it will be important to stay away from crowds, sickness etc. since his body will have nothing to fight the germs--- If you see us-- please just wave or give an invisible High Five--- he likes to go to baseball and soccer so I try to get him there without being around too many people-

Thanks for all the blog entries-- We love to read them-- and for everything else people are doing behind the scenes!

We are almost done chemo #6

Grier should be finished with chemo around 6pm so our plan is to go home tonight-- He has been asking since 7am this morning ... If it( medicine) was done yet???-- we have awhile to go before I can say yes-
He is getting a blood transfusion right now-- so that will perk him up! That should end by the time he finishes chemo- It takes 4 hours so hopefully he will sleep through some of it-
That is it for now--it has been a pretty normal stay here at CMC-- we are ready to go back to our "first" home!

Helen from Child Life asked Grier what his favorite baseball team was... and we thought he was going to say the Braves since he has his jersey on but he said..."STEEL FAB"-- !!! I had to explain that was his brother's little league team!! Go STEEL FAB!