Monday, December 31, 2007

Goodbye 2007!

I know it has been a long time since I updated-- the phone calls have started so I decided I would update because everyone wants to know what we have been up to for the past week! Well-- I wish I could say something exciting but we have done nothing but be a normal family of five! That is actually exciting for me!! Grier, Hayes, and Grace are being normal siblings-- fighting and playing-- ( and driving me crazy!!) Jeff has been working since we returned and I have done what I normally do-- pick up after lots of folks, plan upcoming appts., drive a taxi, and referee! I did get to spend time with good friends and family and that is all I really wanted for Christmas... ( besides the Easy button!!)
Jeff, Grier and I will leave for the concrete jungle (NY)-- on Wednesday morning-- We will most likely go directly from LaGuardia to the PDH and get a CBC on Grier and pick up the pre-meds he will need for all the tests that will take place this week! He will have a CT scan on Thursday am??? w/ anesthesia and bone marrows aspirations in 4 spots-- Around 2pm he will be injected with the radioactive dye for the MIBG scan- On Friday, he will have the MIBG scan w/anesthesia -- Both days will be long and hard on Grier-- and Jeff and I will bear the brunt on waiting to see what these tests find or don't find- We have booked a flight home for Friday-- we will get home late but should be home for the weekend!! I am looking forward to seeing Hayes and Grace play basketball-- and actually bringing Grier with us to the games- On Monday, Grier will have another long day of testing but this time it will be at CMC-- he will have a bone scan-- Thanks Dawn for making this happen before the end of the month!!! It is my understanding after these tests are done the Neuroblastoma Team of MSKCC will meet and decide what is the best 3f8 protocol for him-
So.. Just like most of 2007 has been-- this upcoming NY trip will be exhausting-- I am glad to say goodbye to 2007-- It was not the best year for our family but I am sure it will not be the worst-- We did have some good moments and were touched by so many of you that have reached out to our family in different ways-- We have strengthened relationships we already had and made some new friends-- some who have been living with Pediatric Cancer longer than we have-- and of course the nurses and doctors that took care of us on 7T and the clinic for those many months-- It is hard to believe I did not know what NB was last March but now I hear that word multiple times a day-- even on TV-- ( Good Morning America, The Today Show, CNN-- etc.) This is all thanks to a group of parents at Sloan (The Band of Parents) that have joined together to raise money to fund better treatments for NB! The more people realize the seriousness of this type of Cancer-- the more funding for research will help find a cure for the many children who are fighting to beat NB-

2008 will be a year of HOPE for all of us-- With the treatments in NY, we will hopefully see Grier feel better and get back to being a 3 1/2 year old! We will also get to see his hair return-- :) Happy New Year to everyone on Grier's team! Go Grier Go in 2008!

Wednesday, December 26, 2007

Wii had a very Merry Christmas!!!

Wii :) had a very Merry Christmas-- Grier was very excited as well as Hayes and Grace-- They enjoyed all their presents and the wii is the new family pastime!! Even Grier loves to play baseball on it! The best part was being at home and together--

MSKCC gave us a short break from this crazy routine we have been living-- Today, Grier had an echo test at the Sanger Clinic-- When we got home Sloan called to tell us our January schedule-- Of course, they did not listen to any requests we had! I have asked them to try to change it-- We will be in NY on the 3rd for the MIBG injection-- the 4th will be the scan and then we will wait for them to tell us when the CT and bone marrow tests will be-- Hopefully, this will be a crazy few days of testing then we can come home for a few weeks-

Thanks again for all the prayers, help, emails, gifts, this year-- It had made a hard year a bit easier-- Merry Christmas and Happy New Year-

Friday, December 21, 2007

We are Home-- we had a great trip-- Grier says.. "thanks for the ride, Wachovia!"
He completed harvesting today around noon-- everyone was very aware we were trying to get out of the city today!! And they did everything possible to get done on time!

We may have to do this again sometime in the future-- he did not quite get the target amount they wanted--

That is it for now-- Thanks for all the wonderful cards-- I had the best time opening mail today--


ps-- I got an Easy Button ... and Grier entertained the people on the plane with us today-- He thinks it is so funny-- Thanks Cathia!

Thursday, December 20, 2007

We are living the movie " Groundhog's Day"--- !!! Everyday has been the exact same for the past few days-- And tomorrow will start the same but after we are done with the harvest we will RUN back to the Ronald .. hop into a cab...drive to Newark... and then get on a plane! I know all that rushing around will be worth it-- Jeff and I will tag-team Grier as he is getting harvested so we can come back during the morning and pack and clean our room--

After we finished today at the donor room we had to go back to the
PDH-- while we were waiting Grier got to meet a NY Yankee-- he now is the proud owner of a new Yankees hat and a baseball signed by Joba Chamberlain-- He had his picture taken with Joba too-- There is a program with the Yankees called Yankee Universe and they sell T's and all the proceeds go to Pediatrics at Sloan-- I think it is www.yankeeuniverse.com-- :) He was very excited to see a real baseball player!

Hopefully, this will be the last update from NY until the first week of January--- we have to come back and do lots of scans and tests to see where we are in the battle to get rid of NB-- After that.. the NB team will meet and decide what protocol Grier fits into and then we will start the 3F8 treatment-- it will be one week a month for awhile and then it will space out to every 2 months--This could go on for two years-- or his body starts to attack mouse antibody-
We will also do radiation in between the first and third week of 3f8--

Merry Christmas to all of you-- And we will see ya in Charlotte!!-- Pray that we make the plane and it does not get cancelled--

Coming Home

Message from Amy:

Tommorow will be a tight schedule. Harvisting begins at 8:00. Taxi will pick up at 12:30. Flight for three leaves tomorrow afternoon at 3:oo.

Wednesday, December 19, 2007

I want an Easy Button!

We are finally back at the Ronald after a LONG day!! We left before 8 this morning and stayed in the hospital all day-- did some WAITING for a CBC, platelet transfusion and then ran to the harvesting area and made it by noon-- only to wait some more! That last wait made us miss the 3:30 deadline again-- AHHHH! We found out he did not get the magic number of stem cells yesterday so we had to harvest again today-- Probably will not get the magic number today either so we will go back to the donor room at 8:00am on Thursday-- more SHOTS! I thought we would be coming home tomorrow but that does not look like it is going to happen-- We are planning on harvesting on Friday too-- and Corporate Angels does not have any flights as of yet for us! It is hard to give then an exact day when we do not know our own schedule from day to day-- I thought this might be the case-- since it is Christmas and folks are not flying that much right now- Grier did well again today with all these procedures-- When we finally made it outside he was surprised it was dark and raining!
It is crazy around here-- everyone is trying to do the same thing-- Get home before Christmas !!
I decided what I want for Christmas..... the "easy" button on the staples commercial!! That is it for now-- I actually had to sensor this entry since I am linked with Covenant :)--- off to finish laundry and give a shot!

Tuesday, December 18, 2007

Let the harvesting begin!

Today started bright and early @ 7:30-- we were trying to beat the 8:00 AM rush at the Pediatric Day Hospital (PDH)...But I am convinced that is impossible-- it is always busy! Grier lucked out today-- they did a CBC using his port instead of a finger stick. It made for a not so stressful start at PDH! We WAITED to find out if they had room in the inn (aka donor room) AND they did-- So, we were told to be there at noon-- We walked back to the Ronald.. did some laundry and then headed back to MSKCC--
Stem cell Harvesting started around 12:45-- we had to sign lots of consent forms.. get blood from the bank and do lots of other little things to get him ready-- The worst part was when they said the lab that measures the stem cells collected closes at 3:30-- so if the collection is not there by that time then it will not be counted until the next morning-- Well-- That is our case- we will not know how much they collected until tomorrow at 12! Chances are we will have to collect tomorrow-- they are planning for "future" use and he will be bigger so they make sure they have enough-- JUST IN CASE we need them someday! The process was fine-- Grier slept through the whole thing!
We have to go to the PDH early again tomorrow morning- They will do a CBC and check to see if he needs platelets- It looks like tomorrow will be a repeat of today!! He still has to get the shots 2x a day-- YUCK!
Grier is in a really good mood-- He is eating like crazy and seems to enjoy himself here- He is in a little routine-- and is pretty entertaining at times-- His new phrase is "whatever"-- not sure what movie or TV show that came from-- His good attitude about this whole thing is what makes us grin and bear it when it comes to this "new" normal!
Thanks to Mike for making the www.gogriergo.com website better-- Take a look at the new "buttons"-- and photos are added in the photo section-
I am sure I owe a lot more thanks to lots of folks for their help this week--- THANKS!!!

Monday, December 17, 2007

Hurry up and Wait--



I was hoping to tell you all we started the stem cell harvesting today-- but that is NOT the case-- It was not the counts this time either--- His counts are good-- this time they did not have a space for us! So, it took them 3 hours to figure all this out and then they said to come back tomorrow before 8 and we would start-- They also said to continue to give the shots-- not once a day but twice a day @ triple the dose-- so his WBC was 6.1 today-- can not wait to see what it is tomorrow morning--- WAITING has been the hardest part since we got here-- and it looks like we are in for more WAITING!!! After we left the clinic today, we went to Johnny Rockets for lunch-- Grier likes it--- so that is all that matters these days! After lunch we walked around a little-- it is very windy and cold-- Grier is so bundled he loves to go for walks-- he always falls asleep in the afternoon!! Jeff and I just freeze!!! The picture shows how much stuff is protecting him from the cold as we walk around the city- Hopefully we will start collection in the morning-- and possibly have some idea how many days this will take- NY is magical at Christmas time without the other distractions we are dealing with-- It does not quite feel like Christmas here but I am sure when we get home it will!

The picture on the left is Grier during the 4 hour collection-- He earned a "coin" every time he went in the cup!! Nothing like a crash course in potty training!!! You can also see the "view" from the Ronald :)

Saturday, December 15, 2007

Baby.. it's cold outside


Today we did as much inside as we could BUT NYC is crowded!!! So, we ended up coming back to the Ronald after lunch and hanging out a little-- Grier saw Santa at Bloomingdale's---He was one of a couple of kids in line-- mostly adults waiting to sit on his lap and telling him what they want for Christmas!! :)

Tomorrow we will be in the Ronald for awhile during the 4 hour collection!! It turns out the weather is going to be nasty so it is a good day to stay inside-- I am looking forward to Monday-- I am ready to get going with the harvest so we can start to plan to come home--

Grace turned in her change for Reindeer Raiders-- she collected $165 for Children's Miracle Network -- Thanks to all of you that donated your "loose" change!

Friday, December 14, 2007


We went to MSKCC around 8:45-- had a finger stick and waited for the word that his counts are still not high enough for harvesting--- so we left at 10:30 with instructions -- KEEP GIVING TRIPLE THE DOSE OF SHOTS -- hopefully by Monday morning the counts will be high enough to start-- and his blood and platelet counts will start coming up on their own! We also got the container for the 4- hour urine collection-- and the low-down of what not to feed him so the results are accurate- no Orange juice, hot chocolate, bananas, pineapple, nuts.. Peanut butter-- the funny thing is all of that is served at the clinic snack room!

We walked NYC today-- mostly window shopping while Grier slept in the stroller-- It was a very nice day to just walk around and see NY- We went to Barney's-- the ornaments were great-- didn't know how to get them home in one piece!!

And.. yes he had a turkey sandwich from Lenny's-- Actually he has done nothing but eat almost all day!!!! We also hit the M&M world store-- Thanks Aunt Kathy for the card to get treats there-- !!! After that we went to Toys R US ( with the rest of NY!!!) and he sat in a power wheels-- he said this is what he wants to ask Santa for!!! I will post a picture later-- I did talk him into a smaller version until he gets bigger-- You should have seen him sitting in this car-- he would not even look at me to take a picture because he was so into this truck and the gadgets!!

Thursday, December 13, 2007

let it sleet... let it downpour!....let it snow!

This picture was taken at 4:30am~ He likes flying like this!
Our day started VERY early! We took off a little before 4:45 and headed to Atlanta to pick up someone-- We got to Newark by 8-- and headed to the Ronald-- didn't get there until 10:00 -- TRAFFIC and a detour-- we think!! We checked in and headed to the room -- called Sloan to see if they could do a CBC and they said we had an appointment @ 9:30-- News to us :)-- so we pack up and went over there- As soon as we left it started sleeting!!! A LOT-- Grier was bundled and under his plastic shield but Jeff and I were getting pelted! We both decided this Northern weather was not for us! We made it inside and did the normal waiting around--- I had forgotten how annoying that is!! Finally, we were called back to do a CBC and instead of using his port they gave him a finger stick!!!!! He was not thrilled! We continued to wait and wait and wait-- until 1 and we saw the nurse practitioner-- Grier was not so happy-- I was trying to explain that nothing "hurts" .. he was just tired from being up since 3:30am!! After meeting with her it was decided his WBC was not high enough to harvest tomorrow-- and he needed platelets!!! So, we waited MORE-- and finally got out of there at 3:45! He was asleep in the stroller when we left-- :) Jeff and I walked him back to the Ronald in a downpour of rain!!! We were drenched-- (not prepared for that weather) when we finally made it back-- Someone even commented-- I guess it is not sunny outside!! Hmm-- It must have been the water dripping off my head to let her know that!!!
We made it to our first meal around 5:30-- still nasty outside so we opted for a close dinner-- even though Lenny's was Grier's request-- We Promised him we would go tomorrow-- so hopefully we will not be in clinic all day again! We are all going to bed early tonight-- it has been a long day!
We have to continue doing shots all weekend to get the WBC high for harvesting--- And Sunday we will have to do a 4 hour urine collection and keep it on ice until Monday morning-- Monday-- if all goes well we will begin harvesting-
Thanks to Hawk Aire for the flight-- we had a great flight attendant .. Chris Wise-- he made our trip!
Bad weather is coming-- so tomorrow we will be over-dressed!!!

Wednesday, December 12, 2007

Posted by Jeanna and Derann:

Posted by Jeanna and Derann:

We have been getting a lot of calls about where to send donations this Christmas so I thought it would be easiest to post the information again. The money sent to GO GRIER GO goes directly to The Christenbury's to help cover medical expenses.
Make checks out to GO GRIER GO and mail to:
GO GRIER GO
1503 Old Nation Rd
Ft. Mill, SC 29715

We also have a tax deductable account set up if there are any corporate donations or you want to help find a cure for childrens neuroblastoma.
Tax ID#20-8894566
GO GRIER GO, INCORPORATED funds go to The Childrens Neuroblastoma Society or wherever Jeff and Amy choose in Griers name. Make checks out to Go Grier Go, Inc. and mail to:
GO GRIER GO, INC
1503 Old Nation Rd
Ft. Mill, SC 29715

Thank you for your generosity! The support for Grier and the Christenbury family has been a truly amazing thing to witness! God Bless and Merry Christmas!
Please e-mail any questions.
Jeannas@carolina.rr.com or derannsmoak@yahoo.com
More bad luck... Our flight was cancelled! We arrived at Hawk Air and found out the flight was cancelled-- We have another flight tomorrow morning at 4:00am-- We will be in Newark by 8:00-- ww have a brief stop in Atlanta!

Tuesday, December 11, 2007

Merry Christmas Everyone--

Tuesday

We are quickly trying to find a flight with corporate angel network for tomorrow-- MSK needs us there ASAP-- Grier will get more platelets and blood tonight and we will hopefully be discharged in the morning- And we hope the fever will go away for good-- Dr. McMahon is not too worried about the 100.? fever-- but if it spiked to 102-103 it would put a stop to our plans!

There was some confusion with the interview with Toni and Jen from Lite 102.9-- so that might not happen unless they can catch us before we leave--- Grace may do something with the Reindeer Raiders campaign on Saturday-- If you want to drop off some "loose" change-- you can leave it at our doorstep and Grace will turn it in to the Children's Miracle Network-

We have a reservation for the Ronald-- and now I just need to pack-- !!

Update-- We have a flight @ 12:00pm for Wednesday with Corporate Angel Network-

Monday, December 10, 2007

Not much news to add-- He still has an occasional fever-- but nothing has grown out of his blood cultures-- and his chest x-ray looks good-- so it all must be because he is nutrapenic! They increased the dose of neupogen today and I can not wait to see if the counts take off in the morning--- The Dr. seems to think when the counts increase then the fever will go away-- We may be headed to NY on Wednesday-- But who knows-- this is a day by day waiting game!

I got some shopping done today-- And the tree is still standing-- whew!
I am taping my interview tomorrow at 11 with Lite 102.9-- and Grace is busy raiding coins from anyone she comes in contact with for The Reindeer Raiders-- She has become quite a philanthropist!

And the verdict on the new futon---- not so comfortable--! But it is clean and that is all that matters!

Cookies for Cancer --CNN video-

This is a story that was on CNN recently about Neuroblastoma-- and the treatments and lack of funding-- Watch the video-- The story is all too familiar!

http://abclocal.go.com/wabc/story?section=news&id=5818670---Cut and paste link to see story!
The Band of Parents are trying to raise 2 million dollars to fund a better treatment for NB--

http://www.cnn.com/video/#/video/health/2007/12/09/snow.cookies.for.kids.cancer.cnn.jsonLink

Sunday, December 9, 2007

Changing of the guard!

Grier is still inpatient @ LCH-- he likes the movies that are pre-programmed on the TV-- he can work the whole thing with little help :) He will stay until his counts go up-- he did spike a fever last night but it did not last long-- This is like the last time we were there-- one fever a day same time of day too!

We bought our tree yesterday-- and thank goodness for our mailman, Chris!! He helped me get it off the car-- Today, Hayes and I got things out of the attic and put the lights on! Then Grace joined in the help decorate-- And after I thought the whole tree was done... it FELL!!! There is a little more to that story but I will not post it! So, we cleaned up a MESS of broken glass ornaments, glitter from the snow globe ornaments and rearranged the lights AGAIN-- It is up again-- actually tied up! I hoped to address cards today or at least take them with me to the hospital but they did not come in the mail yet!! I hope they come before we leave town-- I will post the card on the blog-- so at least you will get it in time!

Tomorrow... we will see where his counts are and hopefully have some idea with timing-- So, I will update tomorrow with good details !!! I am headed up soon to switch for the night-- I heard the futon is great!

Saturday, December 8, 2007

Our Luck!

Last night around 11:00-- the transfusion finished and they did his final temp-- and it was 100.5-- so they waited a little, consulted with the doctor took it again and it was 101.?-- SO, he and Jeff spent the night! Grier fell asleep around 10:30 on the futon-- He was trying really hard to stay awake until the "pump beeped"-- but the later it got the harder it was!
I am sure this will mean a "sleepover" for a few days! Just do not know how many! He is suppose to get 3x the dose of neupogen starting on Monday to jump start his counts-- so it may be that we leave LCH and head to NY-- Hopefully we will know more after Monday-
We have some luck-- may start to buying lottery tickets--- :)

Friday, December 7, 2007

Friday news---

Carol came and did labs at home this morning-- The clinic called around lunch and said he needed platelets and blood-- so we needed to head over to the NEW hospital-- We did not have to go to clinic because this is a long process and they would close before we were done-- So, we packed up and went over to LCH--- It is so nice inside!!! The room we are in is great and just when I said we were just here for the afternoon-- they did his vitals-- and he is 100.3 for his temp! So, we are waiting to see what happens before we start all the blood products! Hopefully it goes down and not up and we can get started-- but he is nutrapenic and he always has a 50-60% chance of getting a fever-- I do know that all too well!! We are hanging out watching videos and just waiting for the orders!! AHH! Another flexible day in the Christenbury Household-- Hopefully my next update will be that we are home for the weekend... decorating for Christmas, shopping, going to basketball & lessons and carols-- :)

Update as of 8pm-- I am home with H&G--- Jeff is at LCH with Grier waiting on the transfusion to finish-- It should be done at 10:15-- and then they will come home-- UNLESS something happens between now and then-- The fever he had this afternoon went away on its own-- so I hope it does not come back-! Because if it does we will be in for a long stay because he is nutrapenic! The room we are in is great-- Grier is telling everyone how nice it is-- We are in one of the rooms with the lights outside the windows-- and we played "I spy" from the 11th (oncology) floor looking outside! The nasty chair-bed is a distant memory-- they have these "futon" like chairs-- that transform into a bed-- Today Grier was on the futon all day-- I think he thought if he got in the hospital bed that it meant he was staying! The lobby is really pretty-- lots of crystals hanging from the ceiling-- And the art work all around is wonderful-- all made by kids in the community!

Wednesday, December 5, 2007

from Jeanna....

Jeanna says.. "There are great Christmas Gifts and even some paintings donated by a local artist for sale. Don't miss it! "


Go Grier Go!!!

Yours Truly Needlepoint and Knitting Open House
100% of all profits go directly to the GO GRIER GO Fund

Thursday, December 6th
9:00-5:00
3802 Columbine Circle
Charlotte, NC 28211
(2 blocks from Fairview and Providence)


Great gifts for the Holidays! Scarves, blankets, ornaments, and a great selection of needlepoints and yarn for all of the knitters out there. Also an incredible needlepoint canvas trunk show! Yours Truly Needlepoint and Knitting is a nonprofit group that donates all of their profits to charity. They have made blankets and hats for children at CMC and have held many sales to raise money for various charitable organizations. Questions?: Call Lynn Edelstein 704-366-6765

A long overdue update!

Grier and I went to clinic today-- He is Nutrapenic... and his platelet count was 5!! That explains the nosebleed while we were waiting for the doctor-- He got platelets and we were on our way-- but had to make a quick stop in Chick-fila for lunch to go--! He is not gaining weight-- actually today he was 27.4 and last time he was 28.5-- They say it will happen if he continues to eat-- The rash is a little better-- he is on an anti-fungal med-- especially since he has no immune system right now-
We are still doing the shots-- On Monday, we will triple the dose of neupogen to get his counts going-- as soon as we see them heading up... we will head back to Sloan for stem cell harvesting-- We will save them for later... in case the treatment at Sloan does not work and he needs to have a Bone Marrow transplant- We are not sure how long we will be there this time-- I would hope 5 days-- but we all know how that goes!
Other than that medical news-- we are good-- We have been busy and this week in no different.. PTA program.. basketball and the annual Lessons and Carols at Covenant-
Thanks to MPTS for the great banner Miss Horner made!! We had fun reading all those signatures!!!
Some exciting news--
LCH has patients in it now-- It is very exciting--I have not seen it yet but hope to get over there soon-- I am at CMC all the time-- but believe it or not the oncology clinic is not in the new hospital! So, if we are in town I will get to see it next weekend-- Lite 102.9 is doing their annual radiothon for the Children's Miracle Network and I will be taking part in that this year! So listen to those carols next Thursday - Sunday during The Toni and Jen morning show and you will hear my interview with a musical montage in the background! I sure hope it not a sad song!!!!

Sunday, December 2, 2007

Not much to post tonight-- That is a good thing :)
Grier still has a rash...but we have started medicine ( anti-fungal) and hopefully we will see some improvement by Monday- The shots are going OK-- it is really out of my comfort zone-- but we are managing! I just want his WBC to get to a point we can stop quickly-- I sure hope it is not 17 days like usual!
Our weekend was busy-- just the way we like it :)... We had basketball games.. I went to Gaffney with some friends :).., Grace went to play with Alexandra .. & Jeff and Hayes went to see the Panthers-- Grier just hung out and occasionally wanted to go outside to play baseball!

Friday, November 30, 2007

Here is a quick update-- Grier's chemo went well yesterday-- It was a quick trip to the clinic-- He watched TV.. ate a little breakfast and talked to the nurses about what he wanted for Christmas-- And before we knew it we were done!!! He wanted to go to the "NEW" target so we got permission to do that after clinic-- it was a quick trip! He actually wanted to walk around but ended up falling so he was done shopping!
Today we were busy trying to find the meds he needed for the Sub-Q shot!! After that was done I had my first lesson in giving a shot-- Sorry Carol :)-- I gave our nurse a shot and then I gave one to Grier-- Well, the worst part was cleaning him off with alcohol--- the shot was nothing to him-- He has a high pain tolerance .. but that was not at all what I expected-
The latest is the rash that has appeared!! We are watching it and changed his bandage early in case it was the tegaderm.. He is very itchy!! So, we are trying benedryl too-- Who knows what this could be-- I hope it is gone when we wake up-- Other than medical visits.. Grier and I have been busy doing carpool-- and hanging around the house! Hayes and Grace have been busy with their basketball teams and school work-- Both Hayes and Grace got all A's this grading period!!! Way to Go.. SuperSibs!

Thursday, November 29, 2007

from Jeanna....

Go Grier Go!!!
Yours Truly Needlepoint and Knitting Open House
100% of all profits go directly to the GO GRIER GO Fund

Thursday, December 6th
9:00-5:00
3802 Columbine Circle
Charlotte, NC 28211
(2 blocks from Fairview and Providence)


Great gifts for the Holidays! Scarves, blankets, ornaments, and a great selection of needlepoints and yarn for all of the knitters out there. Also an incredible needlepoint canvas trunk show! Yours Truly Needlepoint and Knitting is a nonprofit group that donates all of their profits to charity. They have made blankets and hats for children at CMC and have held many sales to raise money for various charitable organizations. Questions?: Call Lynn Edelstein 704-366-6765

Wednesday, November 28, 2007

Home by 11:30

We are home and are going to have a quiet day-- He is feeling bad or just tired-- can not tell!! Or it could be the whole discussion about how to give a shot right in front of him!! Tomorrow is a clinic day with an infusuion of chemo for 30 minutes-- That is it for now-- Going to catch up on house chores!

Tuesday, November 27, 2007

Chemo is going well-- he is still eating and drinking so that is a good sign... I am just waiting t see him gain weight! I am told he will soon but I would love to see it ASAP-- he is skin and bones--
Tomorrow-- we should get to leave after the dose of Topetecan?--- we will get to spend the night at our house and then head to the clinic for the last dose on Thursday-- Then the fun will begin-- waiting for the counts to drop and giving daily shots of Neupogen-- Did I mention I never liked shots much less giving them to my child!!! AHHHH! I am told it is so easy .. like sticking an orange-- Well, maybe a screaming, moving, skinny orange??? I am sure we will be good at it in no time-- and Grier can just hate me for this too!!! Dressing Changes, shots.. horrible medicine-- what else can his mom do--? I hope all of this cures him... and it is all a distant memory for him someday-
Grace went to Hannah Montana tonight-- it was not planned at all!!! They came up to the hospital and we were trying to decide who was going where and with who-- our normal juggling routine-- and I asked her if she wanted to go see Hannah Montana-- I saw on the computer that ticketmaster had seats-- so at 5:30-- we got tickets and she and Jeff set out to the 7:00 concert! We are really good at being flexible ... actually better than planning these days!

Monday, November 26, 2007

All has gone smoothly so far!

It is hard to believe that everything started without any delays!!! Yeah!
We got to the hospital last night around 8pm... it was VERY quiet on the floor!! They started hydration and Grier had a snack and then went to sleep!
The Dr. came in early this morning and by 9--- he started chemo! It is a little different this time... vincristine was pushed in his port... then they hung topetecan (30 min).. and finally cytoxin ( 6 hours).
My mom ended up staying for the day and I went to shop for Christmas-- that was short-lived... I am exhausted! So, I came home and took a nap!
I hope all goes well tonight and we can keep the side effects away!!

Sunday, November 25, 2007

Fever gone-- checking in tonight-

Grier's fever went away so they think it was a virus-- He did not have to have the CT scan but when we went to clinic on Friday he did have to have a few x-rays-- Everything looked fine. So we were able to stop the IV antibiotic.
The plan is to go to the Tower tonight and start hydration so we can start chemo early Monday morning. Hopefully, we can finish Wednesday and go home. Thursday will be a clinic day and the last part of chemo in the infusion room-- As we all know.. thing can change-- so hopefully we can keep to this schedule. We have had a lot of delays lately and it is not helping our Holiday plans.

Thursday, November 22, 2007

Happy Thanksgiving to all of you!

Grier has done well at home the last few days with an occasional fever at night-- last night it did not get above 100.4 so I am hoping that is a good thing-- we will find out later today if we need to go for the CT scan in the morning!

I have thought about how I should write this blog a lot -- and I do not know how I could ever name everyone (doctors, nurses, family, old and new friends, and strangers that read this blog!) that has helped us over the last 9 months-- We are very thankful for each of you that has given us encouragement, hope, and help--- Also, thanks to all those that have given to Go Grier Go Fund-- I hope we beat this someday and we can help others with this horrible, never-ending disease-- We are very Thankful for EVERYTHING and EVERYONE for becoming part of Grier's team-- Happy Thanksgiving-- and Go Grier GO!

Tuesday, November 20, 2007

Home!

Grier was discharged late today-- He was given a new antibiotic.. Rocephin and then he got a pint of blood-- He still has a fever on and off and the plan is to watch him and if he is still having fever by Thursday... he will get a CT scan on Friday @ 6:15AM!!! They want to rule out an abscess from the surgery- So, Let's hope for the fever to go away and just be a normal virus!!
His counts are Ok -- so the good thing is he is not nutrapenic (no immune system)~
He had a pretty good day at the hospital--- the "old" Grier was peeking through a bit-- he started pushing the button for the nurse.. and smiling when Shannon, Suzi, and Kristen came in!!! He did not want to go to the playroom to make a "build a bear" but the nice girl from Child Life came and brought him a bear anyway!!! He ate his usual Turkey for lunch and is having some chinese for dinner!! That is it for now-- Hopefully we will make it without any extra trips to CMC this weekend and start chemo on Monday-

Monday, November 19, 2007

The Mysterious Fever

Grier's day was fine all day until around 6pm-- then the fever returned-- So, we still have not started chemo and we will find out tomorrow what the plan is--- So far.. nothing has turned up in his blood cultures-
We had lots of visitors today-- and Grier has been sharing candy with everyone that comes in our room.. Thanks to the Reids!!!
I took Hayes and Grace to basketball and got to see lots of people at church :) -- I am off to bed early tonight-- I think sleep deprivation is getting to me!!! Hopefully we will know something by tomorrow--

Sunday, November 18, 2007

Still here with a fever!

Grier still has a high fever-- we are waiting on cultures to see if it is a line infection-- or a contaminant!!! ~~ ( Sorry could not resist :)!!!) Chemo is still on hold until we have answers-- he is on IV antibiotics so hopefully he will get rid of the fever soon-- It is nice to be in Charlotte right now-- 7T nurses are the best--
Looks like we are here for awhile--
Amy

Saturday, November 17, 2007

2nd Update for today-- not good news!

Well-- I need to update and say forget what I said in the previous blog-- Things change quickly-- Grier has a fever and chemo is on hold-- Hopefully we will be out before another Holiday is spent in the hospital!

Round 7-- aka "the clean up" round

Grier has begun round 7 of chemo-- We are in the noisy room at CMC--- but it is a private room so who can complain! He was not so happy about having to go back to the hospital this morning-- and everyone that comes in is getting the silent treatment--
We should be done sometime Monday and then we will have to go to clinic on Tuesday to get 1 more dose of chemo-- I thought this would be easier instead of spending another night at CMC-
His counts will go to zero quickly and then stay that way for awhile-- when they start to rise we will head back to NY for tests and stem cell harvesting-
That is it for now-- it is time to help with a project!!!!
Amy

Friday, November 16, 2007

Thursday, November 15, 2007

Home has been nice-- but re-entry is a little tough! Lots of mail to go through-- pay bills that need to be paid since we were gone longer than expected and just papers everywhere to look at and purge! Hayes did not feel well today so he stayed home with Grier and I-- and it was a pretty slow day of doing some chores!

The other news of the day is that we will not get to see the doctor we really like anymore at the clinic-- He is gone! Dr. Longee was great with all of us-- and we will miss him! Can not believe three weeks can change so much at the clinic! Tomorrow we will go to clinic and see Dr. McMahon- he will check Grier's counts and make sure we are good to start chemo on Saturday--

Thanks to everyone that helped so much while we were gone.. especially, Jeff's parents, Susan Shimp, Leah and David, and last but not least my mom for putting her life on hold for a few weeks! We also want to thank everyone for the blog messages, cards, packages etc. and visit while we were in NEW YORK--!! And to Wachovia for the flight yesterday-- and to our NY friends... for rides, dinner, info, gifts, emails, and keeping our sheets in the city for the next visit-- I know I have forgotten something or someone-- SO THANKS TO EVERYONE!

Tuesday, November 13, 2007

We got our walking papers!


The post-op check went fine-- we got there and they failed to tell us we had to take him to x-ray @ 9:15 this morning-- so we had to go to x-ray as soon as we got there this afternoon at 2:30! We waited.... and finally got back to see the NP-- she asks a ton of questions-- looked at his x-ray and saw some fluid still in his lower left lung-- nothing to worry about -- hopefully time will take care of that! We also saw this HUGE pathology report basically saying everything Dr. LaQ- took out was Neuroblastoma- After all that-- Dr. LaQ came in and said the same thing-- and to start chemo as soon as we get home- The NP removed a stitch from Grier's side-- it was left from the chest tube-- And that was it--- a few hours later we headed back to the Ronald!
Grier decided he wanted Pizza tonight so we headed next door to Delizia's--
We are getting ready to put in Elf for the 1000th time so we can start cleaning and packing-- This is like dorm living-- after we are clean they need to come inspect and then we can check out!
So, we are headed home tomorrow-- and will check into CMC sometime soon!

Here are some links to things we have enjoyed-- people keep asking-- :)

Lenny's--- Grier favorite!

Crumbs-- best cupcakes!!

Delizia's

Monday, November 12, 2007

Hayes, Grace, and Maggie left early this morning-- and Grier was pretty quiet afterwards-- He told us that Grace was pretty excited about going home-- we asked him if he was and he said yes-- Jeff and I were trying to perk him up so we asked him if he wanted to walk to the zoo-- He liked that idea so we headed off to the central park zoo-- He did not want to get out of the stroller but he enjoyed watching the sea lions eat their breakfast- We went back to the Ronald and he had a package to open! He really like his coffee cup..and everything else in the box!. Thanks Millie! And all the cars things from Kailyn-- He seemed to be in a better mood after the turkey sandwich from......???? (guess)-- He wanted to walk to the grocery store -- so we headed out again! He liked shopping the isles-- and bought some goldfish and apple juice!
He feels a lot better after the miralax worked this afternoon!!! It is a good thing because we were going to get him a gingerbread latte from Starbucks next!-- So, we are excited to share that news at our post-op appt. tomorrow @ 2:30 and we can stop worrying about it-- no blockage!
We ended the day with a wonderful Italian dinner delivered by Charlie--Jeff could not remember the name of the restaurant he went to but it was great-- It was a great surprise and we had a relaxing dinner since Grier had fallen asleep!
We are very blessed to have the support we have during this time in our lives-- Thanks to everyone for everything!

Sunday, November 11, 2007

A good Day!


The Museum Of Natural History...Top of the Rock.. and lunch @ ESPN zone-- with Hayes and Grace = a very nice NYC day!!!!
Grier had a good day too with Maggie-- They went to Lenny's for takeout... strolled in central park.. and a trip to FAO for another animal!! We may need to book another flight just for the animals we have gotten while we are here- !! All are in the bed with him and a select few get to leave the Ronald and get out and ride in the stroller-
He has eaten some today-- and loves coke ( "brown coke")-- he had one in a glass bottle today-- and was very proud of that--
I would love to post some pictures-- but my battery in my camera was dead!!!-- Of all days for that to happen!!! Oh well-- we had a good time anyway!
The crew leaves in the morning-- we can start cleaning this room-- I will not miss the "camping out" we have been doing for the last couple of weeks-- but being so close to MSKCC is worth living in close quarters with a cooler bag as a fridge!! Someone said when we go home we will have a new appreciation of our house!! I believe that!!!

Saturday, November 10, 2007

family time-


Here is a quick update before all 5 of us go to bed---:)
Hayes, Grace, and Maggie got here very early this morning ( Thanks to the Bonds for the frequent flyer miles and Zanna for the ride to the airport!)-- Some of us took a nap ( me included) before we went to LENNY"S for lunch!! Then the boys came back and played in the playroom and Grace and Maggie and I went shopping-- it was nice to walk around NY-- I actually had not been past 1st Ave-- in a long time-
They have been good to get Grier to talk more-- he is actually eating a little too-- We got him some "muscle milk"-- full of protein and he seems OK with drinking it!
So, it was a good day- and tomorrow will be busy as well-- Hayes wants to go to the Museum of Natural History AGAIN--- so that is the plan-- Maggie may stay with Grier since his stamina is not so good- It will be nice to spend some time with them and not have to worry about anything for a little while-

Friday, November 9, 2007

This has been a really long day-- almost the whole day was spent in the room-- Grier has taken several naps today-- He does not have much energy and does not want to play- We are trying to get him to eat-- and that is a challenge-- he did takes some sips of a milkshake today- He asked for a pancake for dinner-- but as soon as we got it-- he did not like that idea- We think the laxative is giving him stomach cramps-- but really have no idea since he will not tell us- He did go to the drink machine a few times-- so that was good to get him walking again-

The Charlotte family will be here tomorrow-- maybe he will perk up for them- I hope so-- because this will be an extra LONG weekend with all of us in this tiny room-- I wish I had some TPN to hook him up to-- he is getting so tiny again-

Thursday, November 8, 2007


Grier was discharged today from Sloan-- He is taking dulcolax :) and that can be done at the Ronald just as easy as the hospital room!!! I heard they had a room crunch so he was moved out-- Thank Goodness- I know he will be able to recover better in a quiet room with much noise-- He has already had some batting practice in the room-- He is hitting "home runs" with his Mets gear! Sorry-- Boston fans-- I have tried!!!
We are scheduled for a clinic /post-op appt. on Tuesday ( only day the surgeon has clinic appts)-- then we will be on our way home pending a flight plan from corporate angels~ We are a few steps closer-- :)

Looks like we will have another busy weekend wit ha visit from Hayes, Grace, and Maggie!
Hopefully Grier will be up to venturing out of the Ronald-

Amy

PS-- I didn't know my bingo comment was going get so many people offering games-- Please do not send anything else here-- we are being over taken by toys :) Don't worry Grier will know how to play soon enough-- I bet we have one in our game closet too!!
Everyone has been so generous-- thanks so much!! He loved opening the boxes when we got back to the Ronald today!!

Wednesday, November 7, 2007

Today was more of the same-- except late in the day he did get to add soft foods to his diet-- The NP asks him what he would want to eat-- and of course he wanted a turkey sandwich :)--- OH well-- he had to settle for pudding, yogurt, eggs, applesauce, pound cake-- etc.-- he tried a little of each but was not that impressed by any of it-- He did drink a lot of Gatorade today-- and then he heard there was a hot chocolate machine-- so that was the number #1 request-- We took it ALL very slow today- with only one set back this morning-- Honestly, the days are running together-- and my updates sound like a broken record-- but I hope tomorrow is the day they tell us to go "home" aka the Ronald!

He went to the play room and played with the cash register again-- and tonight a volunteer came around to each room announcing "BINGO Night"--She asked Grier if he wanted to play bingo and explained the prizes-- he said "yes"-- and after she left Grier asked Jeff and I " What is Bingo?"-- I laughed for a second and then thought how sad that he knows about TPN, chemo, and everything else in this cancer world but has no idea what Bingo is! So, I was determined to get him down there-- we told him he could win something so he went-- we made it in the door and lots of "big" kids were there and he was ready to leave-- the nice volunteer gave him a prize anyway :)

Thanks again for all the cards.. tons of cards from Covenant Kids Care, more pictures from First Pres WDS, gift cards and cards of encouragement from friends!! Also-- a huge thanks to John Hoskins for putting Hayes' fan up!! Thanks so much!! He was very excited and that was a project I could not finish before we left- And last but not least tonight I am going to sleep on new sheets!!! Thanks Pat-- This will help me not have to rush to wash their sheets before we leave-- Theirs are washed and ready for the next family :)


It is hard to believe Sunday will be three weeks here-- especially since the plan was for 8 days! We do not have a date to come home yet-- but I am packed and ready--:) Even if it will be a transfer to a different hospital-- it will still be great to be in Charlotte-- I am looking forward in seeing grass even if it is not green!!

Tuesday, November 6, 2007

NG tube out-- BUT.....

Grier had his NG tube taken out this morning-- and was able to start clear liquids! He had some apple juice and ice chips-- and a few bites of an Italian Ice-- He did ok with all of it until around 6:30-- and he got sick again- So, we are back to ice chips only !! He keeps telling me he is hungry and thirsty-- Poor Thing! He did walk to the play room and played with the cash register this time-- He is watching Curious George-- we have almost worn out the CD that was made from PBS-- now he is on to Maisy and other noggins shows~ really anything on DVD is good-- no commercials!!!
Jeff and I just switched so the tag-team parenting continues-- Honestly-- I may have to send him home if we are here much longer-- Someone has to work!!
We have a new roommate-- she is very cute--her mom thought the same thing about this room!! I mentioned it to the doctors and he said after we get out of here we will not even remember this part-- Well- It would be nice to have windows and space while we are here! And I do have a very good memory :)

Monday, November 5, 2007

Today was a day of no change until tonight around 8pm-- He started talking a little bit and I quickly called home so everyone could talk to him while he was in the mood-- :)
It has been 1 week since the surgery-- hard to believe since we have moved so many times- I thought we would have been home by now-- :)
After talking on the phone-- he colored a picture in a coloring book-- and then said he wanted to walk to the playroom-- So, we got all his cords together and unplugged the pump and went for a walk-- He played with the kitchen in the playroom for a few minutes but quickly got tired so we went back to our tiny room-- As soon as he got back in the bed he was asleep-
His still has his NG tube in but it is not suctioning-- just using gravity- So far so good with the nausea- He is still on 2 meds for nausea but it seems to be working better-- The surgeon will check tomorrow again and see what the next step is--
We have seen 2 roommates check out-- so our time has got to be close-
Thanks for all the cards--especially the packet from 3rd graders in GA-- the letters were fun to read-- Kids say the perfect thing to kids-- ! Also, the cards from First Pres Weekday school-- they were great!
We have decided to come to Charlotte for chemo-- basically chemo is chemo and CMC can do the same as NYC-- So, we think the benefit of being at home or on 7 tower would out weigh the convenience of already being in NY- Grier is so much more comfortable with Shannon, Scrappy, and the rest of the nurses on 7T-- Also I want Grier to get a little stronger before we knock him out again with a heavy dose of poison! We will have to stay in close contact with MSKCC so we can get back here at the optimal time for tests -- and discussion of 3F8-- But we will get back here in time!!!

Sunday, November 4, 2007

Not much change with Grier-- he still has an NG tube in and they are watching closely to monitor any changes with the output- He still has times when he feels nauseous. He is also very quiet. And we all know that is not like Grier- Originally they thought we would be out of here by now but it looks like that is not going to happen anytime soon-- lots of things need to change- This is very much like last April at CMC for the LONG stay--

On another note-- my weekend was good--I got to show off my new knowledge of the city to some good friends from Charlotte, Rock Hill and Shelby-- We had a great lunch at Serendipity3 and did some walking!! Thanks to Amy in Rock Hill for the lunch-- That was so generous of you! It was fun to be around some familiar faces!

Today was the NY Marathon-- it is almost like a holiday around here--It was fun to see the runners and all the spectators-- Every year there is a team from the hospital that runs and raises money for pediatric cancer research-- It is called "Fred's Team" They bring the kids outside to cheer on the team if they are able-- obviously Grier was not able to watch this year- I took some pictures of their shirts-- I will try to post later- The bad part is you are stuck on one side of the street for a long time!!!

Tomorrow we will reevaluate the plan with Grier and maybe do a CT scan to see if anything is causing this problem or if it is just his digestive system is slowly recovering-

PS-- I opened a package today and it was several pieces of wood flooring!! No name was in it-- and it was mailed from Fairview road-- So, I am assuming there was a mix up and someone needs these floor pieces-- But it did make me laugh--- I will call them tomorrow so UPS can come pick up the box-- :)

Saturday, November 3, 2007

Last Night was the longest ever-- Zofran did not help at all with his nausea--- Finally they called the "fellow" and she called for an x-ray-- At 1:00am they wheeled us down for 2 x rays-- The good news was no blockage-- the bad news he was still vomiting ! So after they tried a different nausea med.. they came in at 3:00-- to put the NG tube back in. YUCK! That was suppose to be the cure all but he continued to get sick. The tube was not working for some reason-- Finally after many trips in here and a 3rd nausea med-- they got the tube to work. This all happened around 5:30! Then vitals after that-- Needless to say it was a night from H***! He is still sleeping right now-- Jeff is at the Ronald and I will go there later. Some friends decided to come visit today so the plan was to get out of here for awhile with them-- Hmm-- I am either going to have to sleep or load up on caffeine! I was told to expect set backs so I guess I am not surprised--
Here's to cold windy NYC day-- courtesy of the tropical storm!

Friday, November 2, 2007

Since I am not sleeping -- I thought I would update the blog again--
Shift change has helped- But he is still vomiting so they have ordered an abdominal x-ray to see if there is a blockage or ileus?? Crystal will be so impressed I brought this up-- I remember that from late April! Who knows when they will come to get us-- sometime early am is my guess-- too bad they moved us out of POU! The surgeon mentioned discharge tomorrow or Sunday-- but I really doubt that will be happening- :)
I have been wrong about how fast we are moving so far so we will see-- being at the Ronald all together will be nice-- I am a little tired of walking the streets by myself! Hopefully they will come soon and figure this out so we can get some rest-
Grier has been moved yet again-- this time it is to the pediatric floor to the semi-private rooms-- I have dreaded this part-- 2 pumps beeping, 2 tv's, no privacy, 1 bathroom and a space about the size of a closet! There is only a walk way to walk around the bed-- and with that you are moving furniture-- We were so well taken car of the past few nights and so far I am getting frustrated here- He started vomiting as soon as we got here and I have called several times for zofran-- Funny-- I could get him morphine in a second but nausea meds needs an act of congress-- And who wants to feel sick after abdominal surgery-! Why they have these rooms is beyond me- Grier is already overwhelmed and this just adds to the problem- And forget HIPPA-- the curtain is not sound proof!

Besides Grier being overwhelmed-- Jeff and I had a huge amount of info unloaded on us today-- We need to make a ton of decisions quickly regarding where to have the next chemo treatment-- There are so many factors to weigh-- and getting Grier home as soon possible where he can be "Grier" is important-- So, we have a call in to Dr. L to help guide this decision- It is possible they could start chemo this Monday or Tuesday here-- I can not believe it but that is what they said- If we decide to stay here Jeff will come home for awhile-- I am glad the surgery happened so quickly without much notice-- but I would love for things to slow down a little since that that part is over- We all need to catch our breath!

They just brought the zofran-- almost 2 hours since the first call in!! This may be the longest night ever-- Good thing-- tomorrow is a brand new day!

Thursday, November 1, 2007

We are getting closer--



Grier has had a busy day so far. Early this morning PT came in and got him sitting in bed.. then had him scoot to the edge... then he was put on the floor and walked to me in the chair and sat in the chair for awhile-- After she left Dr. LaQ-- came in to see him and decided tubes should come out-- so the chest tube, NG tube, and catheter is out-- He also had some bandages removed-- It was not pleasant for him while all that was happening but he looks better now-- This all happened before 11 this morning-
He walked a little more this afternoon-- the whole time telling us he can't walk!! Well-- he walked to an ice machine-- and back to the room- He is still pretty quiet-- He said one thing today-- Hey Dad- Can I have some smarties? Jeff asked the nurse and he still needs to wait to eat something-
He still needs some oxygen sometimes-- and tonight the hope is he gets some good sleep--- while continuing to manage pain--
Tomorrow he will need to walk more and more-- and spend more time in a chair- They also want him to go to the playroom--
The other good news of today was the bone marrow test result-- the 4 aspirations were clean for now-- I say that because NB cells can always be hiding-
We are repeatedly told how well he is doing-- All those prayers worked!!
A few steps closer to getting home-
Amy

I am going to post some pictures tonight when I walk back to the Ronald-

He feels like "POO" in the POU!


Grier is still doing OK-- I decided to update earlier today since I forgot a lot of stuff yesterday-
He moves his legs-- Today PT will come in and get him up and on his feet- He still has tons of tubes in and knowing Grier that is driving him crazy- He has a catheter, NG tube, cannula for oxygen, chest tube and tons of monitors-- so he is hooked up! Last night he was very uncomfortable and we could not figure out why-- he had just had a medicine for pain-- and it ended up that he felt the tube from the catheter and saw it -- After we covered him up he was better-- His swelling is down a little and they say after he gets up a little everything will get better and tubes will start coming out-
He did not sleep great-- he was up humming every 30-45 minutes but easily calmed back down-- This is probably not pain but just nerves because the change of rooms-- and the difference between the two- He is calm right now- watching Micky Mouse-- Yesterday the show of choice was Elf-- and Kicking and Screaming-- He must really like Will Ferrell-

So, the plan for today is to get him up-- sounds easy but it is very hard to watch- From what I hear PT is going to be good here- They will also continue to do chest compressions-- And hopefully this will help his lungs and in turn get the fever to go away-

I had the best chair bed here!! I guess I have slept on enough to rate them but I sure hope the new LCH has this kind-- it is more comfortable than the bed at the Ronald!

The NY Marathon is Sunday- Everyone around here is talking about it-- lots of doctors and nurses will be running in it- They run right by the hospital- Too bad Mrs. Hayles is not running in it this year--!!

That is it for now-- this room has the perfect name "POU" because you feel like "poo" if you are in here!

Wednesday, October 31, 2007

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--!!

Tuesday, October 30, 2007

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!

Monday, October 29, 2007

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.

Sunday, October 28, 2007

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

Saturday, October 27, 2007

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!!! :)

Friday, October 26, 2007

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

Thursday, October 25, 2007

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

Wednesday, October 24, 2007

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-

Tuesday, October 23, 2007

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!

GO STEEL FAB!

GO STEEL FAB!

Go Grier Go Magnets are Here!

Go Grier Go Magnets are Here!

Grier's address in NYC

Grier Christenbury
Ronald McDonald House of New York

405 East 73rd Street

New York, NY 10021

Before 3F8

Before 3F8

After 3F8

After 3F8
30 minutes later

Free Money for Go Grier Go!.. just by shopping online!!

iGive.com

Grier leaving NY-pres and going back to MSKCC

Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!

Grier going for a ride in the ambulance across the street

Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!

Grier patiently waiting surgery to remove tumor

Grier patiently waiting surgery to remove tumor
Monday 10/29/07

Go Grier Go Picnic in the Park

Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!

On the way to NYC!

On the way to NYC!

Grier at the "new" clinic at CMC

Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07

Some of our team at the Hopebuilders 5k

Some of our team at the Hopebuilders 5k

HOPE IS GOOD!!

HOPE IS GOOD!!

Supersib- GRACE

Supersib- GRACE

SuperSib-- HAYES

Grier and his Wonder Pets fly boat cake!

Grier and his Wonder Pets fly boat cake!
I am 3!

Grier & Grace at Covenant

Grier & Grace at Covenant

Grier & Pat

Grier & Pat

Go Grier Go!

Go Grier Go!




Jack and Charlie wearing Go Grier Go T's

Jack and Charlie wearing Go Grier Go T's