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!

A little Nausea.. birthday, soccer, and baseball!

Grier didn't feel that well early this morning. But around 11-- he perked up and started eating "krispy" doughnuts and grapes! Mrs. Leary came by and played with him and brought some candy that he is enjoying!!! Baby Bottle Pops!! He showed them to Hayes and Grace tonight but was not going to share! Thanks to my mom-- I made it to the baseball game. Jeff, Hayes, Grace and I went to Cantina for her birthday dinner-- ( her choice) and we got take out for Grier and Mags! Grier ate a lot for dinner and then helped with the blowing of the candles on Grace's cake-- we did it quick since we were not sure if we would set any alarms off with the smoke!
Grace seemed to have a good birthday even though it was chaotic!!!

What a busy day and Hospital! + Update

Ok- The day started with Grier excited about going to the hospital-- weird.. I think! But he did not want breakfast at home because he said he would get something there--
We got to clinic around 9:30 and had blood work done-- Around 10:30 we find out that there are no empty beds on the 7th floor so we would start fluids in the new infusion room at the clinic-- That was the best part of the day-- the room has tons of windows and fun things for the kids to do--- besides TV! Jeff came and stayed with him for an hour and he played with Julia ( another child with Leukemia) and made Grace a birthday card-- I went to ETES to do a birthday class treat for Grace! Around 1:30 a bed opened up and we made the trek over to the 7th floor-- And as of right now, still have not started the chemo yet-- Crazy Day!!

We met a few new kids today-- the clinic was busy-- One 10 year old was diagnosed the same night as Grier with AML-- we have been on the same chemo rotation a few times but never met-- She is doing great and had her last chemo last week!! She also has Dr. L as her doctor! Here is a great article about her-- www.charlotte.com/280/story/280059.html

UPDATE--as of 9:00pm
Grier finally started round 6 around 5:45pm-- I guess that will mean a late discharge on Monday :)
He has been busy playing Hungry, Hungry, Hippos!! I forgot how LOUD that game was!!! He played it for the first time in clinic today. When we were finally called over to the hospital, he did not understand why he could not take it with him!!! Well-- Thanks to Kristen in Child Life another game was found on the hospital floor-- And it is being well loved in room 7927! I think I am going to have to find our old one at our house tomorrow---

I am going to share a new cause with you!!! I know all of us have kids on teams- soccer, swimming, baseball...whatever-- And at the end of every season we get together and buy a gift card for the Coaches that have so graciously volunteered their time. Well, here is a great idea that I recently have been told about a few times this week and I think it is worth sharing--
www.curingkidscancer.org--- Coaches Curing Kids Cancer
I am not sure how many people read this blog-- but I hope that you will pass this idea to League Presidents, team moms, etc-- You basically honor your coach by donating money to this organization--- I really do not know anyone who would not like this-- It is going for a good cause-- And just imagine, instead of the Dick's or Favorite Resturant gift card, if the 200 teams of Charlotte Junior Soccer donated 100 each - $20,000 would be used to work toward a cure for kids! Go to the website -- it is very easy to navigate-- And pass this idea around- please!

Friday -- We check in for #6

We will go to the clinic tomorrow and Grier will have blood work done- After the results are back we will walk to the 7th Floor and begin the 6th round of chemo-- It is the last one in the protocol he has been on- The chemo will last 72 hours and then hopefully all will be good and we will go home on Monday--

MSKCC- has what they need and are reviewing Grier's case-

Grier is eating well without the TPN, so I hope this continues as he feels the side effects of the chemo-- He does not even realize he has not been on TPN-- This morning he woke up and I heard.. "Mom..Mom... I just heard the pump beep, so can I get up?"--- I had to show him he was not connected to anything!

Thanks to all that have supported me in the Hopebuilders 5K-- The last time I looked our team was a little over 9K!! October 13th will be here before we know it!

Things are slowly getting answered!

We went to the "new" clinic today. It moved last week, and it is not in the hospital anymore but in a medical building across the street from the ER-- He did not even remember going to the new clinic last Monday-- that is how sick he was!
Today, Grier's counts were good and they said he looked good too!
He is still on IV antibiotics-- but instead of Saturday as the last day-- it will be this Wednesday! Jeff and I are thrilled-- we are a little sleep deprived!
No other news from NYC-- we are still waiting for a doctor to doctor conversation-- Our Doctor has tried to get him but he is a very BUSY surgeon-- sounds like he lives in the OR! We have a deadline-- if we do not hear that Grier will have surgery within the week-- he will get the 6th round of chemo- here in Charlotte- I feel better that there is some plan-- chemo will buy us time and hopefully shrink the tumor more so surgery will be easier-
We will know if he will do the 6th round by Wednesday-- I have tried to work it to be home for Grace's birthday (9/29) but it looks like Grier will be doing chemo if we are in Charlotte--- so we can have another party at Hotel CMC !
Hopefully, I can update tomorrow and let you know where we will be within the week!!

NO more clowning around!

I have called the clinic twice today to see if the papers that needed to be faxed were faxed to NY-- I am sure they are sick of hearing from me-- but after yesterday when I picked up the phone and called MSKCC myself and had no problem getting through I decided I was going to do this myself! So far, they are working on them but I am going to call around 4 to see if they are done-- weeks have been wasted! This was prompted by a conversation yesterday while at CMC, the doctor on rounds came by and said they were trying to get in touch with Sloan-- and I casually said -- when I get home I will try too! He said that he would be surprised if I got to them but go ahead--- WELL---SURPRISE Dr. ????! No stings were pulled--just dialed a number on the WEB page!

Grier is doing fine at home-- He is eating great in my opinion but we will see what the Dietitian says on Monday when she looks at the food journal I have to keep on him-

Antibiotics are going well too--

Update!! As of 4:15 and SEVERAL calls later back and forth to clinic to MSKCC-- they have faxed the paper to NY and NY has it! :) Now let's hope FEDEX gets the rest to them on Monday-

Home!

We got home @ 3:30-- Grier was more than ready to leave !!!

News from MSKCC-- They will be receiving tons of reports on Grier tomorrow by fax-- and some other things by FED EX-- Then they will review it to see if he is a candidate- So- at least something has happened!

Grier will be on IV antibiotics 3x a day EVERY 8 hours-- this is the same routine we did at the beach so I will have a huge smile on my face in about 8 days when we are done-

ps-- as you can see we made it to the Festival in the park!-- One day down and three more to go!!

Just a little stressed!

We had visits from the doctor on call today-- first telling me that his white line also grew out the same germ as the red-- not a huge surprise- and they were going to back off all antibiotics except for Vanc-- Then they came back as a team and said the lab thinks it was a contaminant--- heard that before here at CMC-- but I tend to disagree since he clinically was SICK-- something made him spike the fever- So, the plan is to keep him on the 1 IV antibiotic and hopefully go home tomorrow and I will administer the medicine--- You know I have my nursing degree now!!! :)
And the question I ask every time they come in is -- any word about Sloan and surgery??-- I am told they are having a hard time getting in touch with the
surgeon AHHHHH! So, I did ask if waiting this long was OK-- because he still has active NB cells in the tumor-- and today they said Well, we need to decide how long to wait and maybe we need to do something in the meantime-- SOMETHING? is the question of the day--- another round of chemo...??? what? So, we are waiting to see what we hear-- Let's just pray that my Dr. gets in touch with the surgeon at Sloan--that is who we want to do the surgery-
He is feeling fine-- a little restless-- and ready to go home! He does not want to miss Festival in the Park!!! He is eating and possibly may get to go home without the TPN (IV nutrition :)!!! That would be great-- he would be able to sleep without getting tangled up in cords and no alarms for me to reset at night!!

www.mskcc.org/prg/prg/bios/43.cfm

It was his red line!

The nurse came in this morning and said a bacteria grew out in his red lumen-- which makes sense since that was the line used yesterday at home to draw blood for the CBC- so as soon as it was flushed yesterday the germ was pushed to into the blood stream- The NP came in and said to go home he needs to be fever free and they need to have negative blood cultures-- And as soon as they identify the exact germ then we may be able to back off some of the 4 antibiotics he is on !

Things change in a second!

Well-- I was hoping to update with some sort of news about moving forward with surgery... BUT things took a turn for the worse!
We took Hayes and Grace to school as usual and got home around 9-- Kidspath came round 9:30- she needed to draw blood for a CBC- Grier was playing and watching TV while we waited for kidspath-- he got really excited because she was in the driveway and we planned to go for a walk after she did the bloodwork-- He sat and had his lines flushed and all of a sudden started with the chills-- it was very strange-- at first I thought he was trying to tell the nurse that it was cold outside-- but he kept shaking and stopped talking- The nurse left and said if he continued like that to call the clinic- well I called as soon as she left and they said to bring him in! We got to clinic by 10:15 and he had a fever of 104.9! He did not have a fever at home so the 104.9 was a little shock!
He was given fluids and started a few IV antibiotics in the cllinic before we walked over to CMC! Yes-- he has been admitted :(
So, we are here-- his fever went down after tylenol to 101-- but an hour later it was 103 again- He does not feel good and is not happy about staying here--
I will update later-- Hopefully we will be home this week some time--

We had an appt. today and his counts are slowly coming back--- the good news is that he did not need any blood products.

We have decided that we want to go to Sloan Kettering in NYC. There is a surgeon there that has lots of experience with Neuroblastoma and is well known in his field-- He is very meticulous and that is what Grier needs! So, now we wait to hear when we can go-- hopefully soon ( within the week) and get this next step behind us and get back to CLT as soon as possible to get back to our "new normal"-

As soon as we know when we can go we can make plans to get there and hopefully get a reservation at the Ronald McDonald house-- So, a little more waiting is in store this week-- I hope to update with details very soon-

Are we done yet???

Grier got a pint of blood today-- and from 9:30- 3:00-- must have asked me 1000 times if he was done yet!!! He did not even fall asleep after benadryl--
We met a cute little girl in the transfusion room today-- she was doing her 5th grade work while Grier was crashing his car into the wall, coloring pictures, watching Einsteins, and playing with Playdoh-- I am telling you this because September is Children's cancer awareness month-- and before Grier was diagnosed I knew of a few kids that fought this fight but now we know so many-- This link was something I saw on a caringbridge site and thought it was worth sharing-- http://www.youtube.com/watch?v=AGS4yE5v9rM
No other news to share-- Grier is napping after a long day at the clinic-- Entertaining the nurses makes him tired!!!

This picture was taken this weekend of Henry and Grier-- Henry is the Holy Trinity middle schooler that wanted to help Grier so he came up with an idea to sell popsicles during their field day last Spring-- Henry sold a lot of popsicles and gave Grier a nice gift! Thanks Henry for your thoughtfulness---!

Something funny to watch!

The weekend was great-- I just realized that we have been home for almost 4 weeks straight-- he did not get that "in between treatment" fever like he had for the rest of the cycles---"Whoo Hoo"!! As Grier would say! We shared lots of fun times with friends and family and Grier was busy playing baseball as usual-- I have a movie if you want to see it-- I hope it works-- I am very new at iweb!!! http://gallery.mac.com/achristenbury/100000
Tomorrow we will go to clinic for another blood transfusion-- it will be a long day-- And hopefully we will find out where he will have surgery soon--

We have some news-

Grier went to clinic today to have his counts checked-- And they were good-- finally after 20 days of IV neupogen we can stop! Dr. Longee has looked at the scans and read the reports from the MIBG and it shows that the large mass is still active neublastoma cells- But the good news is there is no signs of new tumors right now, the only thing that lit up was the mass-- Now it is more compact than it was in the beginning-- it does not have that pancake shape. He does not think the next round of chemo will do anything to the mass and we need to find a surgeon who can remove this tumor-- Calls are in to Doctors at Duke, UNC, and Memorial Sloan Kettering Cancer Center, so hopefully by next week Jeff, Dr. Longee and I can decide where we are going to remove this tumor-
I am a little dissapointed-- I wanted this mass to not light up at all and be dead cancer cells but knowing that there are no new tumors right now is comforting- We have a really good doctor here and he is treating this case as if Grier was his child- And I can not ask for more-- He is looking for a 5 star surgeon that is going to remove this tumor- We may possibly do radiation but right now it just depends on where we go next for treatment-

On a different note, school has gone well for Hayes and Grace this week-- both are enjoying thier classes-- It has been a little tough to get everything done but I am gradually getting back into the swing of things-- baseball has started and soccer should start soon-- and then we will be busy-- Grier keeps asking when his "cool" starts-- He sees everyone else going and really wants to go too-- His teacher from last year came to visit and that seemed to help-- and he has watched a video of his class singing from last year and loves to show me all his friends--

Thanks to everyone for all the emails, calls, meals, walks and EVERYTHING else this week-- Have a great labor day weekend--
Amy

We are done!

Today went much better-- we did not arrive until 11:30 and we were home by 3:00-- They said we did not have to come back tomorrow-- so we have a day off from CMC! Grier's counts are still low--.2 so we are home staying away from crowds-
Hopefully we will have good news to share next week--
This will be a busy weekend preparing for the first day of school--lots of papers to fill out--:)

Hurry Up... AND wait!

Today we left in a hurry for CMC because nuclear medicine called @ 9:00am to say anesthesia could take Grier at 10:00-- instead of 12:00! I jumped on the chance to get home quicker since Grier woke up asking to eat! We arrived at CMC @ 9:30-- checked in and the wait started--- Jeff drove from work early and I knew when 10 :00 passed we were in trouble-- Long story short-- we were told 20 more minutes all day!! And I asked Jeff if it had been 20 minutes yet and he commented about 4 times!
Well-- about 12:30 the CRNA (Caroline) came to tell us they were ready for Grier and everything else went fine-- we have had her a few times for other procedures so it helps to know a familiar face and not have to go into the story each time-
We got home @ 3:30 and Grier is playing and having a good time-- We will go back tomorrow @ 11:30-- not one second earlier and do the same scan again- I hope it is the right time because there have been several different times told to us-- but Caroline checked for us about anesthesia and she has 12:00-- So that is what we are going with since the scan can not be done without them! We also have to get labs drawn before 11:30-- so another busy day!

Still no word on last Fridays CT scan-- lately we just do the scans and wait and wait for some piece of information!

Day 1 of MIBG

Today was LONG!!! Grier and I left around 8:30am and got home around 5:30-- Needless to say we are both tired--
We had to go to clinic for a type and cross for blood-- before the 9:30 appt.-

After WAITING forever ( the took us back at 10:30)--The first part of the MIBG was drinking a TINY bit of liquid-- I was worried about him getting it down but when we mixed it with juice it was not even a teaspoon! This took about 5 seconds! This medicine protects his thyroid. Then we had to wait an hour-- we went outside and looked at the ducks on the greenway-- After the hour, we went back to nuclear medicine and WAITED--- finally they took us back for an injection in his port-- it took about 2 seconds! And then we went back to clinic and he got a blood transfusion and a platelet transfusion-- Whew-- That was a LONG day- I bet you can tell that I was not too happy about all the waiting!!! We would have been home earlier if nuclear medicine could have been more efficient-- and we would not have had to wait in a lovely waiting room when he is .1 for his white blood count & -- no immune system!

Tomorrow- he will have to drink the medicine again an hour before we go to CMC-- then he will have anesthesia and they will do the scan-- it should take a few hours-- we will go to recovery and then go home- We will find out tomorrow if we go back on Thursday to do it again- and they said today that it could be possibly Friday too-- that was the first I heard that--

As always-- check out my hopebuilders page-- and if you want to donate to Levine Children's Hospital-- you can sponsor me !!! 100% of all money raised goes to LCH!

www.register.hopebuilders5k.org/goto/Amy.Christenbury

It has been awhile since I updated!

I can not believe it has been almost a week since I updated this blog!!!
This week was very busy-- Sunday I gave blood for the first time ( AND without fainting!!!) Thanks to Derann I did not chicken out!! Monday Kidspath ( home nurse) came and did a CBC-- his counts were really good so they cancelled the appointment for Wednesday and told us to come in Thursday instead! Wednesday we went out of the house for awhile --- :) Thursday we went to clinic and found out his counts were at zero!! That was a shock since they were so high earlier in the week---- They wanted us to come back on Friday am to check platelets because he thought he would need some--

Well-- Today we went to clinic at 7:45AM!!! They drew blood and then we raced downstairs for the 8:00am CT scan appointment!! He had the scan and was in recovery by 11:30 and our favorite recovery room nurse was waiting for Grier!! After recovery we had to go back to clinic for a platelet transfusion-- They were right! So, Susan walked us to the clinic ( which is in the opposite end of the hospital!) We got home today around 2:45 -- Needless to say it was a LONG day for all!! He was back in the front yard tonight hitting baseballs-- or "homeruns" as he says~

Hopefully we will make it through this weekend fever free - Next week is another crazy week full of appointments-- clinic ( probably for a blood transfusion) and then Tuesday, Wednesday, and Thursday he will have a nuclear scan called MIBG- This scan will light up active neuroblastoma cells-- We are told that sometimes on CT scans you can not tell the difference between scar tissue and tumor-- so this will give us more answers-

Thanks to EVERYONE who has sponsored me and my team for the Hopebuilders 5K walk that benefits Levine Children's Hospital!! If you would like to do this here is a link -- www.register.hopebuilders5k.org/goto/Amy.Christenbury

Grier has finished 5 rounds of Chemo!!

We got home on Saturday and Grier is up and going again!!! He started getting sick Friday morning and chemo would not have ended until late so we decided it was best to stay and leave Saturday morning. Our stay was great except that we lost "panda" on Friday when we got new bed linens on his bed. But thanks to EBAY ( I know some of ya'll are laughing:) ) we have a new one coming in the mail!!! Panda has been with Grier since Day 1 in the hospital so we had to find a new one!!

Now that we are home, we will start all the medicines by IV at home and hope to keep the nausea away-- He will have a busy week ... home nurse visits for CBC counts on Monday, clinic visit on Wednesday and another CT scan with anesthesia on Friday.

As for Grace, Hayes, Jeff and I we are hanging in there.. Jeff and I are recovering from sleeping at the hospital (or really watching Grier sleep!!) and Hayes and Grace are excited to have everyone under one roof again--

Friends and I have formed a team to walk in the Hopebuilders 5K. Each of us have had children who have had long stays at the hospital so we are honoring Charlie, Jack, Clayton and Grier. I have been working on my page to honor Grier on this walk. If you want to see it look here http://www.register.hopebuilders5k.org/goto/Amy.Christenbury It is still a work in progress!! Feel free to walk with us in October.

That is it for now-- Thanks for all the help last week and a BIG thanks to John Williams at Barclay Downs!!!! Remember if you want to donate blood tomorrow check out an earlier post for the details-- I am planning on going for the first time!!

All is well--so far!

Grier has really done well-- he has been a little more tired than usual but that is it!
He had a lot of visitors today-- you can see him on the news 14 channel on cable at 24 past each hour being visited by some of the Charlotte Knights-- That was fun for him-- Pat, Hayes, my mom, and I were there too-- he showed them how he could use his teddy bear as a bat and hit a panda bear!! Very Impressive!!
Hopefully we will be home tomorrow night-- he will not finish until 7pm-- And since we live so close we may go home--

Quick Update

Grier started chemo yesterday around 3pm-- the first dose was done in 2 hours (checking blood pressure every 15 minutes) and then he was given some meds and the 2nd dose.. cisplatin started-- it runs for an hour and then he gets lots of fluid to flush it through his system-- it can damage kidneys-- After that his diaper needed to be changed every two hours to make sure he was OK--- this went on until 7am!-- The best part of yesterday was being able to walk upstairs to the 8th floor and see our new neighbor!!! Everyone was excited to see Leah and David's new baby since we were at CMC it was very easy for us to keep visiting during the day!

He took a long nap today after a pretty busy morning of painting (we have hung his pictures all over the room), and playing concentration with Nurse Judy!!-- I was glad since he was getting a blood transfusion during his nap and sleeping through it is easier for me-- he does not get tangled in his lines as much!! And we do not have the beeping from the pumps!! After the transfusion finished he started the same chemo routine as yesterday-- He is doing well-- today he is a lot quieter than yesterday and he has lost his appetite-- He wants Chinese for dinner so we will see how that goes over!! Grace has been busy at tennis camp this week-- yes! the hottest week of the summer!!! And Hayes has spent lots of time with his friend Henry-- :) We finally found out that the second bone marrow test was clean-- that is what the doctor expected but it was good to know for sure-- Other than that we will have more tests in the coming weeks to see where we are in the battle to get rid of cancer!

CT results

Jeff, Grier and I went to clinic yesterday and met with Dr. Longee-- He had some results for us-- there has been some more shrinkage of the tumor-- most importantly it looks like it is shrinking away from the lungs-( This is important from a surgical stand point-- he is not having breathing problems) There is still a mass in his abdomen. There is still no results from the bone marrow test.

Our next step will be to consult with several doctors-- of course the pediatric surgeon here in Charlotte who appeared in our room the first days of diagnoses. He has seen the tumor since he did the exploratory biopsy.-- And we will consult with Duke and UNC too-- Dr. Longee is helping us find the best place for the second phase to take place-- We are considering everything-- being close to home, expertise in tumor retraction, consistency in care when and if we do stem cell harvesting, and of course a doctor who is a blue cross blue shield provider-- ( The only 3 pediatric surgeons in Charlotte are not!)

Grier will start round 5 on Tuesday-- we will have 4 days of intense chemo and hopefully be ready for a late Friday discharge-- Cisplatin is the chemo that gave Grier the hardest time with vomiting during treatment and LONG after we were done getting the medicine and it is also the one that can damage hearing.

This week has been a little normal-- pool time, bike riding, walks at Freedom Park ( NO, we did not run into the ball python that was on the news!!), and getting ready for school-- school supplies and forms to fill out!! It felt good to fill preschool forms out for Grier even though I have no idea when he will get to go-- But I know he is ready-- he is talking about going to school a lot--!

Have a great weekend and I will update from the tower next week!!

Blood Drive at Covenant and still no results!

We still have not heard any results from the CT scan-- Grier goes to clinic tomorrow for a CBC and most likely will get a blood transfusion. He was very low on Monday and I was told to be prepared to stay awhile on Thursday. Also his WBC was very low so I am not sure when Round 5 will start-- Hopefully a lot of questions will be answered at clinic tomorrow-

We are asked all the time how people can help Grier-- Well, other than prayers for him and prayers for his doctors to make good decisions.... I would suggest donating blood-- Please see below for information-- Grier has been lucky to have blood and blood products available to him everytime he needed it--

Want to help???? Come to Covenant on August 12th and donate blood-- Grier has had numerous blood transfusions and platelet transfusions in the last few months. To make sure there is enough blood we encourage you to donate if you can. You are giving the gift of Life and you never know when a friend or loved one will need it-

Red Cross Bloodmobile
Sunday, August 12, 2007
Fellowship Hall @ Covenant Presbyterian Church, Charlotte , NC
8:00 a.m. – 12:30 pm

If you are healthy and can donate a pint of blood Sunday, August 12 please call Nora Kuester (704-365-1172) or Judy White (704-804-7561) and make that life giving donation of your life’s blood.

" I have a hard time believing that boy is sick!"

We got to CMC around 8:00am and waited awhile before they took Grier back for the CT scan and Lumbar puncture. Grier was playing baseball with a stuffed animal in the waiting room when a lady stopped and said "I have a hard time believing that boy is sick!" I just smiled -- but she is so right, it is hard to believe how well he is doing. If he had hair he would fool everyone :)

Grier was so good during his procedures. His went in talking to everyone and then the medicine aka "magic milk" was given through his port and he went to sleep- We left and waited until about 12:00 and then he went to recovery. He woke up talking and ate a Popsicle and then we went home-- We were home by 1:15 and could not have asked for an easier day!!

Now we have to wait to hear about the scans and the bone marrow-- that is the hardest part!! Even though Grier looks and acts well we know that his case is tough so we wait to hear what the next step will be for him. If all goes as planned he will have labs drawn on Monday at home and then we will start round 5 by the end of next week.

Thanks for all the emails, and calls today-- Grier is lucky to have so many people cheering him on!!! Go Grier Go!!

Discharged before Breakfast

We are home and Grier still has very low counts. He WBC is recovering but very slowly-
We were discharged before breakfast!! That is a record for us :)
He will have another CT scan and bone marrow test next Friday the 27th-
Hopefully I will not update for awhile-- no news is good news :)

Fever is gone and we are just waiting for his counts to improve-

Grier is feeling really well-- he has not had a fever since Monday @ 3:30am and so far nothing has grown out of his blood cultures. We are waiting for his wbc ( white blood count) to shown a sign that it is improving-- He is keeping us all busy playing cards, baseball ( he seems to make anything a ball and hit it!, floam , movies etc. We hope to be home by the weekend-

fever!

Grier had the same pain that he had Friday all weekend-- After multiple calls checking on his urine culture they took on Friday--- it was negative- And since he did not have a fever we were told to wait it out.

Sunday afternoon he woke up from his nap and had a fever of 100.5-- We were told to wait until 101 and then call back. It ended up staying around 99 for the rest of the day-- UNTIL he woke up around 1:00am with a fever of 101-- We were admitted to CMC at 1:30am and did a chest x-ray @ 3:00am and they started the standard antibiotics-- At 3:30 his fever was at 102! So, We will spend a couple days at CMC to find out what if anything comes back on his blood cultures-

Friday the 13th!!

Today was one of "those" days!!! Grace left for VBS and I started calling the insurance company!!! Fun! Fun! I was getting ready to run a quick errand with Grier and Hayes and then the plans changed-- I changed Grier's diaper and saw a tiny bit of blood-- so I called the clinic and we went to cmc! I thought this was going to be a quick trip-- but to our dismay we were there from 11:20-3:40!! Another day spent at the clinic-- Grier did not have a UTI but he ended up needing platelets.. His counts are 100-- very low so it was good to check to see if he had an infection. We are home now and will continue to give him the medicine to increase his WBC. We are looking forward to the weekend and hope that it is uneventful!

Clinic today and tomorrow

We survived more than 24 hours of no power at home this weekend!!! We were all ready to pack up and go to my Mom's on Sunday night and then the power came back on!!! -- needless to say it made the weekend interesting-- Jeff and I gave IV meds by candlelight!!

Grier had a check up today. We will go back to the clinic tomorrow for a blood transfusion. We could have stayed today but would not have been done by 5-- I think going back tomorrow will be better-- Grier can only manage for about 2 hours in the clinic before he goes stir crazy! He made a necklace today with the Child Life Specialist. It is called a beads of courage necklace-- you get a bead that represents every procedure that you have had at the clinic or the hospital-- It is a really neat program and Grier had fun making it-- His necklace is full!!! It really puts all those procedures in perspective-- he has been through a lot -- I will try to post of a picture of him wearing the necklace soon:)

His counts are still dropping and he has not hit his low point yet. He is still on TPN ( nutrition by IV) and other meds- His has lots of energy and is really acting like a 3 year old boy!!

Round 4 is done!

We are home and everyone is feeling good-- even the dog! Everything is very normal at home right now-- Grace and Grier are having a Tea party... Hayes is at baseball and I am heating up dinner that Grace and Maggie made!!! ( It is Grace's favorite-- Spaghetti!!!-- Grace made meatballs so she is very proud!
Grier is feeling good-- as soon as he got home he was ready to play and has not stopped since we walked in the door!!

We are done with 4 cycles and will have another scan and bone marrow aspiration soon-- But for now we will continue to do meds at home and keep a close eye on his counts and hope is stays fever free!!!

Happy 4th of July

Grier started chemo on Tuesday and it has hit him hard this time. He is getting sick and sleeps a lot because of the anti-nausea medication- He has brief moments when he wants to play-- these usually happen when Hayes and Grace come to visit- Our nurse assistant helped us get a larger room today so that was a blessing-- we are so cramped in the smaller rooms-- Hayes' foot is fine and Tucker still does not feel good-- and my hives are still around--
We enjoyed the visitors today and Grier loved his candy treat!-- He has not eaten much but he did try every color of tootsie pops today!!
Happy July 4th--

Round 4 will start on Tuesday-

Clinic went well this morning. His counts were good and he gained weight!! He is over 30lbs-- not by much but it sounds really good! He ate a lot while we were on vacation-- a lot of good cooks were in the house so he enjoyed lots of guacamole and scrambled eggs and belgium waffles-- we were hoping all that eating would help him gain weight and it did!

We will be admitted tomorrow around 10 and they will start fluids for a few hours before they begin the chemo. This round will be the same as the first two-- 72 hours of continious chemo and then hopefully home by Friday afternoon--

That is all the update I have for now-- I have to finish doing laundry and pack for CMC-- On a side note ..our dog is not feeling well so Jeff is at the vet with Tucker, Hayes may need an x-ray of his foot-- he fell off the balance beam at the park!!-- and I am nursing Hives that I got at the beach-- looks great!!! My face looks red but not the sun-kissed kind everyone hopes for after a week at the beach- OH well-- there is never a dull moment at our house :)

We made it the entire week!!!

We are back from a great vacation in North Topsail with family and friends-- I did not blog all week because I knew it would jinx us and we would have to come home for some reason!! And except for giving alot of medicine while we were there, it was like Cancer never entered our lives for a week!

Grier had a fun time playing in the sand-- we wrapped his Hickman up with plastic to protect it and he was fine-- he could not swim in the pool but he did not seem to mind-

Hayes and Grace had a blast with all the visitors-- I think they enjoyed the nightly game of the "name" game the best-- that was an Anne and Susanne suggestion!!

Pictures were taken by Keely-- it was so windy I can not wait to see what they look like!!

Dinner was cooked almost every night-- and lots of fun memories were made -- Thanks for all the calls and emails checking in on us-- I think some of you were more nervous about the week than I was!

Grier goes to clinic on Monday and we will find out the plan for the week-- Round 4 is next and I think we are ready to get it over with-- I told Dr. L that we have spent every holiday at the hospital since March 26-- so I guess July 4th will be celebrated from the tower!

He is feeling better and we are home-

He is home and doing fine-- I will have to give IV antibiotics at home for a few more days but that is OK with me as long as we are in our house!! He felt really well this time, except for Saturday when we checked in, so it was hard to keep up with in in the tiny room!!! It is much easier to entertain at home! Thanks again for all the thoughts, cards, meals, TOYS, and help with the older kids-- we are hoping for no more fevers for awhile!! And we will start the 4th cycle the first week of July-

ps--- I have more Bracelets!! If you need one email me or Jeanna--

We know what caused the fever!

Grier continues to have fevers...some as high as 103 but we now know why so we are feeling better about this stay at CMC. It seems to be staph that is causing his fever-- it grew out very quickly and the antibiotics that were started yesterday should clear the infection up. His chest x-ray came back with a fuzzy area so he will need to take another x-ray tomorrow to determine exactly what that is. Clinically he is doing fine. The plan so far is to wait it out a few days and let the antibiotics work and then retest him to make sure the infection is gone- The good thing is that this happened here on this weekend and not next weekend- :) And that he is not neutropenic ( no immune system) -- Hopefully we will be home soon--

Life interupted once again!

Well-- we woke up this morning and Grier was not as perky as he usually is... so when we felt his head he was warm!! Ahhh!!! A fever-- it sends us running around making sure all our ducks are in a row because we know the drill at CMC! Grier and I left for the hospital and Grace, Hayes, and Jeff left for baseball--

We are at the hospital now waiting for CBC results and blood cultures to come back-- It will be 48 to 72 hours at least-- Please pray that nothing grows out and he has a normal virus and we can get out of here soon!!

The first day of summer vacation!

We had a busy weekend full of birthday well wishes and activities!!! Thanks to everyone for making his third birthday so special. His cake was a fly boat from the Wonder Pets!! My mom made it and everyone ate it except Grier-- he has not had an appetite for about a week- Oh well-- we will make some wonder pet cupcakes when he feels likes eating and celebrate again!

Grier will go to the clinic tomorrow for platelets- Hopefully he will not get a fever-- We need to come home to celebrate Hayes' 10th birthday, attend a swim meet, and a baseball game!!

Summer vacation has started for us-- It takes us awhile to make the transition!! Grace is doing a camp this week and Hayes is relaxing!! And I am just trying to keep the peace at our house during the day!!

We will start the next round of chemo soon-- hopefully the timing will work so we can spend a whole week at the beach-

A quick update--

We just got back from the clinic and Grier is doing fine-- his counts are still good and will probably be the lowest this weekend-- ( this usually is the case 7-10 days after chemo started) We will check counts again before the weekend to make sure we do not need any blood products--

Grace, Grier and I went to Church for the first time in a long time last Sunday-- Pat had her Children's Ministry Celebration--
We had a good time and it was great to see everyone-- Grier had a good time too-- He liked the slide- see pictures!

We have had a lot of interest in Grier's birthday-- and we are planning to do something low key depending on how he feels-
We may celebrate next weekend or the next-- he will not know the difference!!

Hayes and Jeff are heading to Atlanta to see a Braves game with Anne and Will-- it is Hayes' birthday too as well as Anne's~~

Everyone has been so generous for the past few months and we appreciate everything-- right now our house can not hold another toy!! So, if you want to do something for Grier... I would suggest making a donation in his name to the Levine Children's Hospital or buying a book or a toy and giving it to Child Life- Child Life is a great service for children to help ease their worries and make the best of the hospital experience- We are very lucky to be in an area that will have this new hospital and supporting it as much as possible is what we plan to do- You never know when you will need it!!

We are Home!

Grier got home on Saturday-- he is doing fairly well-- he is still experiencing nausea this time and no appetite at all-- ( I spoke too soon on the last blog!)
We will go to clinic this week to get counts checked-- AND hopefully stay away from CMC this week-- Grier turns 3 on Friday and we would love to be home -- we will celebrate later when his counts are at a safe level-

It has been a long time but here is an Update-

Here is a long overdue update!! We had an extremely busy weekend—5 baseball games in 3 days in Indian Trail, a cookout with family and friends for Memorial Day, swimming at the pool, shopping for summer clothes and a warning ticket from a friendly police officer in Matthews!!! (My tag had expired—I was not speeding!) I am telling you this because we had a pretty normal week ☺

Last weeks test went OK—Grier did great— We thought he was going to be in some discomfort after the bone marrow test and he made it through with flying colors—he came home ate a doughnut and was ready to play—loves playing baseball while sitting in a chair-

Grier went to clinic on Tuesday to make sure his counts were OK to start the 3rd cycle of chemo—Everything looked good so we were admitted and chemo started around 3pm on Tuesday- This cycle is different from the previous rounds—it is two different types of chemo and it runs for about 3 hours total—we were concerned about the cisplatin because it seems to cause the most nausea and vomiting but so far he has been fine ☺

We also heard that the results from the CT scan—there has been shrinkage in the tumor ☺ Some areas like the abdominal area has shown a greater percentage than the lung area— It is still not small enough to remove surgically. But it is responding to the chemo—and I have to remember that this scan is after 2 cycles and we have 4 more to go- The bone marrow test came back “clean”—no neuroblastoma cells were found in the bone marrow—This was great news for us to hear-

This cycle is four days instead of the three so our hope is to go home by Saturday. Chemo will end Friday but with cisplatin you have to give a lot of fluids after to flush out the kidneys to avoid damage—He is ready to go and is waiting for the medicine to end—This is a good sign since he thinks it is normal to be at home and not at CMC☺

All the tests are over-

Grier made it through both days of testing with anesthesia really well-- Now we are just waiting for results. We will go to CMC on Tuesday to start round 3-- Have a great Holiday weekend-

A big week ahead!

Grier will go to the clinic tomorrow ( Wednesday) to get his counts checked-- and then he will go downstairs for a CT scan- after that he will go to recovery and then we can go home if all goes well- And then we will go back on Friday do the same at the clinic and he will have a bone marrow LP- he will go to recovery again and then go home- After these two results come back we will know about the date of round 3-
This will be a busy few days for all of us and especially Grier-- please continue to pray that he is not in any discomfort during and after these procedures-

NO clinic :)

We did not have to go to the clinic after all-- blood was drawn at home and then taken over to the clinic-- the results came back and he did not need platelets so we were able to stay home today--
If all goes well we will be home until Tuesday--

Home again and this time it is a THURSDAY!!!

We are home!! Grier is doing well and taking a ton of medication-- We had a choice to stay tonight @ CMC and do some antibiotics tomorrow morning and a scan or go home with the possibility of coming back-- well-- We live too close not to choose home! At least we all will be sleeping in our own beds tonight ( except Grier--he seems to like my bed!) We will plan on doing a scan early next week as outpatient- and possibly start round 3 by next weekend--
He walked today and actually stood up by himself-- I think he is so much stronger and is not quite as scared-
We may go to the clinic tomorrow for more platelets-- if we do please say a prayer he does not get a fever after they are finished-- That would put us back in for a few days-- we know that drill all to well:)

Thanks for all the notes and visitors lately-- they made the time at CMC go by quickly-

Another test result!

The test came back and he has a hard type of bacteria to treat in his line-- so the weird part is he should look and act sicker -- he does not have a fever and his counts are increasing each day-- so they took another culture just in case-- The only option is to surgically replace the line/port-- We may go home on Thursday and wait the 5 days at home and hopefully nothing will grow out during that time-

Still @ CMC

We are still in the hospital-- we are waiting on a lab tests that came up positive for gram neg in his lumen and then they can narrow down what type of antibiotic to give him-- he was on 3 IV antibiotics and 2 oral but we have dropped one of the IV antibiotics-- so we are just waiting! He got another platelet transfusion today and spiked a fever this afternoon-- He is having a horrible time with a diaper rash -- this is caused by c-dif, which he tested positive for on Monday-- needless to say there is a lot going on but he is feeling well and talking to nurses, bowling, watching movies, and listening to a new CD ( Roger Day!) He did crawl on the bed and tries to stand up to look in the mirror-- I am glad he is using his legs!!

Hopefully we will be out soon-- and we will know the date of the scan and round 3!!

A long day!

We had a clinic appointment today at 10 -- Grier ended up needing platelet and hemoglobin transfusions-- he had a reaction to IV benadryl -- he was inconsolable for about 40 minutes-- and around 4:30 while he was napping he started to feel warm-- I was hoping it was because he had been sleeping on me since 3:00-- but just to be sure we were admitted around 5:30-- we went through the same drill-- chest x-rays, blood cultures and now we just wait it out 3 days-
He still has a fever tonight so I am glad we got to the tower around 6pm instead of coming home and going in the middle of the night-- The more I read about Neuroblastoma the less days like today surprise me-- it seems to be par for the course!

On a brighter note-- Hayes hit a homerun ( his first out of the park!!) last night-- you can see a picture of him on www.dyaa.net!!

Wednesday-

We just got back from a clinic appointment and all went well-- he looks really good and feels really good-- They took blood and then sent it off while we waited-- Dr. L came in and thought he looked great and was pleased that he was eating-- He left to go get the CBC results and his white blood cell count was .1!! We were both a little shocked that he is feeling that well-- considering last time-- he hemoglobin count was good too-- We have to go back on Friday to check again and see if we need to get platelets before the weekend-

Pat came to visit today and kept asking Grier to walk-- he would just smile and say "I can walk" and Pat wanted him to show her-- well, he did!! He took a few steps to her and then back to me-- She also told him about the Children's celebration at church in June and he is very excited about that-- I think he thinks it is this afternoon!!

Check out the www.gogriergo.com site-- there are new pictures under Community Support!!

ball games, and preschool @ home-- A full weekend!

We had a great weekend-- we were very busy with visitors, baseball, closet cleaning, soccer and vet visits for Tucker!!

Mrs. Leary came by this morning and made Grier's day-- we had a little preschool at our house! She brought a craft to make for Mother's Day ( Grace and Grier made it together after she left) and she brought a book on tape that he liked to listen to at school- he wanted to listen to that right away-- And she got to see the video of the class--

I learned a few nursing techniques this weekend from our home health nurse!! I made Grace, Hayes, and Grier laugh at my first attempt to get rid of an air bubble in the saline syringe--- I sprayed water in the air and got us wet!! After the quick shower I flushed the line and hooked it up to the pump that controls his TPN---

We go to the clinic on Wednesday and I am looking forward to that to see where we are with his counts--

Thanks again to everyone who is helping us-- especially with Tucker this week ( Anne & Susanne!!!)-- he looks and smells great-- we love his new haircut and so does my vaccuum! And his quick check up by Dr. Jimmy helped us so much--

Another Friday Discharge!!! We are home again-

Well- It is Friday and we have been discharged again!! I am not complaining -- it seems to be our new Friday rountine-
He did great today. We woke up early and started watching his class video-- I would say we watched the 11 minute video at least 30 times today-- every nurse that came in saw it as well as any visitor-- When Dr. L came in he saw it too!!! Grier was waving to the TV at the end of the video when all his friends are waving good bye-- It is really sweet to watch-- I did ask Dr. L if we could visit his friends when his counts go back up and he said yes!!!
He is eating really well-- he is also still getting TPN so any extra food he eats is just extra calories!!
He is playing with Grace right now as my mom and Anne and I are unpacking-- it is really nice to be home--
Thanks for all your prayers -- they are working!!

It was a pleasant Thursday!!

Grier is doing well—no fever and he is eating and sleeping!! We finish chemo tomorrow morning around 9am— It is amazing how well he sleeps through the constant noise in the hospital as well as the poking, beeping and changing diapers in the middle of the night-- Dr.L says he is doing well with this round—
One of the highlights of the day was watching a video of his class having music time!!! It was so cute and he was grinning the whole time—

We are off and running with round 2!

Tuesday, May 1st— and early Wednesday, May 2, 2007

Chemo started around 10am – and Grier was still in his good mood—He stayed with my Mom and Jeff’s parents while I went and ate lunch with Hayes and Grace at school—Anne and Mac went with me too! After lunch we came back and a picnic was waiting for us. Grier was shooting baskets, and playing with Pat and Buddy (dog puppet that only speaks to Ms. Pat)—I will let Pat explain Buddy—I did not know who he was but as soon as Grace came in she said oh- that’s Buddy! He has a new “cars” TV tray that he loves to eat on as well as color and play crazy eights-- He is still entertaining nurses we had when we first were admitted—they come to hear him talk since he did not say a word for 20+ days--- Grier had a piece of pizza for dinner and ate it while Dr. L talked to us for a good hour—I think he is entertained by Grier too—he left wearing a Go Grier Go hat!! --- We all went downstairs for dinner after a few games of Hide and seek with Grier—Anne taped it and showed the video to Grier and he said “ hey! I have a new haircut~~~” We all laughed because I guess he did not remember when Ross showed him the mirror after we were done buzzing his hair-

The nights have been different—he is not sleeping as well and early Wednesday morning he spiked a fever— but other than that everything seems fine—we will do a scan in about 3 weeks to see how much the tumor has shrunk—

I did find out the Neuroblastoma research funding is far less that other types of cancer—so hopefully through this experience we all can change that!!

A great day in 7925!

Grier is finally feeling better!! The nausea stopped after adding a new medication.
He had a busy day playing games, going on walks in the wagon, watching The Wonder Pets, and talking on the phone to Susan and Maggie. Anne spent the day with us entertaining Grier. She was our own Child Life person today! —Grier felt so good that he even talked to the nurses today—some of them had not heard him talk since we checked in a month ago—at one point he told Dr. L “ I not sick, I feel better.” He is still getting TPN but he is also eating as well—he looks like he has gained some weight ☺ We will start the next round of chemo tomorrow (Tuesday, May 1st). He is going into this round of chemo stronger than last time so our hope is that it will be easier on him with less side effects-

Grier felt the same today-- we are still waiting to hear why he is getting sick. My mom ended up leaving early this morning because she did not feel well-- and Jeff spent the afternoon with Grier while I went to ETES extravaganza-- It was fun!! Hayes and Grace really had a good time and it felt good to be outside doing normal activites-- Jeff is staying with Grier in the hospital tonight and I am with Hayes and Grace at home-

We went to the dinner tonight and the waiter told us that our check had been paid for by another party in the restuarant-- So, thanks to whomever did that for us!!-- We are overwhelmed by the support we are getting from everyone--Whew-- it makes me speechless-- and that does not happen much!!

I am going to post some pictures of a few things that people have given us in honor of Grier-- GOTR did a plant at ETES and CC Knights baseball team took a picture with everyone wearing Go Grier Go bracelets--

We are Back!!!

Just a quick update—
We have had an unusual week—Monday we spent half the day at the clinic—that is the last time I updated this blog!! And here is what has happened since… Tuesday was a good NORMAL day for us—Grier and I went to get new crocs for him—and then came home picked up Hayes and Grace at Elizabeth and went to soccer practice--- and we ended the day watching Hayes and Steel Fab play baseball--- then in the middle of the night (why do kids seem to get sick then??) He started throwing up—we went back to the clinic on Wednesday and got fluids and zofran—They thought he had a virus. After spending 4 hours we went home and Grier slept—until he started getting sick again—we went back to the clinic today (Thursday) and they did more fluids and zofran and admitted us!! So we are in CMC again getting TPN (nutrition in a bag) through his port. He has lost a lot of weight—he weighs 23 lbs vs. the 30 he weighed a month ago-- We may be here until we end chemo sometime next week—but do not quote me on that since things seem to change- We are not in the same room as last time… we are now on the oncology pod-

Busy Weekend and a Good check-up!

We had a busy weekend -- lots of time in the stoller for Grier!! I heard there were a lot of " Christenbury sightings!" I will admit we were outside as much as possible!! I was walking between two fields most of the weekend with an occasional request to see the ducks!

Grier is sleeping much better at home and has some of his appetite back- I think it is a little harder to be at home-- I have not figured out a new routine yet-- and I love a routine that works! Hayes and Grace are hanging in there-- they have been busy with sports and school-- Grace has a choir musical on Wednesday--

We went to the doctor this morning and they did blood work etc. The good news is his counts are up-- almost 7000 for wbc
and his ANC counts are around 3300!! He also did not need to have any transfusions-- We will not go back to the Dr. until the 30th and they will check to make sure we are OK to start chemo that day-

It looks like Monday, April 30th we will be back at CMC to begin round two-- that is at least 10 nights of good sleep before then!!

Thanks for all the prayers-- it is nice to see those wrist bands on everyone!! Go Grier Go!

We are Home!

We were discharged today around 5:00pm-- about the same time as last week!! But time we have not had fever for several days AND he was talking a little today as well as smiling at visitors as long as they did something funny-- like Go Bananas!!

Dr. L said we could go because he has started to eat--- well-- he had a whole KK doughnut this am and then ate icing from a cookie this afternoon!!! At this point we will take what ever he eats--

Thanks for all the company today in 7914-- it made the day go by fast--

I will try to update the blog daily while at home-- We are scheduled to start the next round the 25th but it may be pushed back a few days so he can gain some strength ( as well as Mom and Dad)--

That is it for now-- Thanks again for EVERYTHING!! Go Grier Go!!!

A little Blog while watching Grey's Anatomy

Thursday Night --

Grier’s counts were up today--.9!! Tomorrow I bet we will be in the 1000’s!!
I went home for a little bit and tried to sleep-- it worked for a little while but I had that weird groggy feeling after I woke up!! Grier has not had anything to drink or eat today—I am crossing my fingers that tomorrow he will try-

Exciting news—a friends Brother in law has help set a webpage for Grier--- go to www.gogriergo.com--- it is still a work in progress!! Thanks Mike!!

I am so overwhelmed from the stories I am heard from people that want to help—especially the kids—They have come up with great ideas—I heard about the kids from Rock Hill doing a cheer around their neighborhood for Grier--- and Henry’s ideas for dress down day—it all means a lot—thanks- It is a helpless feeling but prayers for our Dr. to make good decision are all we need right now-

Wednesday Update ( and a hint of Thursday)

OK- here is the update for Wednesday, Grier’s counts are up to .4—he received platelets late in the afternoon. We had a visit from Mrs. Leary again and she brought a book made by his preschool class – it was the cutest poem with pictures of everyone. We have looked at it a lot—and if you came to visit yesterday I probably showed it to you!
He is not talking and not eating—we have taken a vote and we think he looks like Brittney Spears-- And yes we watched Idol—Grace is glad Sanjaya is gone-

Today we got news that his counts are .9—so we are going in the right direction—but it is not the counts keeping us in here—he needs to drink—so when we go home again I can give meds and he can stay hydrated—

That is it for today—I did hear Drew is going home—that is great—Hopefully we will too soon!!

Thanks again for all the notes, blogs, and visits, and everything else ya'll are bringing-- :)

Off to Bed early!

Grier’s counts stayed the same today—I am just glad they did not go down- He ate 3 bites of a KK doughnut— still not drinking-

That is it for today— I am going to bed—we have a new sign on the door—telling the NA’s not to do vitals until 7am—we need some sleep in 7914—

A bad buzz!

Well we had some good results today-- they think the fever was caused by a urinary tract infection. So, the antibiotics that he is taking by IV should clear that up. His counts went from .1 to.2 today-- I was getting excited that they are starting to go up but I was reminded that it is a tiny difference--maybe just one extra cell that passed by at the time of testing-- If it continues to go up tomorrow than it will mean more. He still will not eat or drink-- we are trying everything-

Ross and I gave him a buzz-- we had to because the hair loss was driving him crazy-- it was all over his pillow and silkie- hence getting stuck on his face and he did not like that- Let me just say I will not offer my hair cutting service to anyone-- I will leave that to my friends at T.Reid!!

We are waiting for a few things to happen so we can try to leave again-- no fever, eating or drinking something, and in general feeling better-- My mom and I are getting better at the nights each day and being the advocate Grier needs right now-

Thanks for all the prayers- and well wishes--

ps .. pat- thanks for my treat today!! :)

Sunday Night-

This is a short blog for tonight—Grier is the same as yesterday. Jeff stayed at CMC for most of today and I spent time with Hayes and Grace—they beat me at horse (basketball game) a few times!! We went to lunch and did some homework and made sure book bags were ready for Monday morning-

I know folks want a “Go Grier Go” bracelet—if you want one please email Jeanna at jeannas@carolina.rr.com and she knows how to get them --Pat has some too—So, if you are around Covenant she would be the one to ask- Our oncologist has a bracelet and he wears it everyday—and he tells Grier he is part of his team… and says “Grier I know you have a big team out there!”

Thanks to everyone – I know I keep saying it but I am afraid I am going to miss someone- Thanks to everyone at Covenant, First Presbyterian Weekday School, ETES, Black Forest, Alphabet Soup, Jameston Dr. folks, Dilworth Little League, the Bad Bees soccer team, my mother’s offices, SimplexGrinnell, CMC, our pediatricians, our friends, everyone reading this BLOG and of course family you have given us a lot of strength knowing that so many people are praying for Grier to get better. I am sure I have forgotten someone, but just remember I am a little sleep deprived!

ps The chick-fil-a cow that he received yesterday is a hit with the folks visiting and nurses!-- everyone has something to say about him! We look forward to visiting chick-fil-a soon when he feels better!!

A very tough day!

Today was a tough day for Grier—they think he has mouth sores and is in a lot of pain so he has not eaten or had anything to drink for two days- He is not talking and looks like he feels bad—he had a reaction to an antibiotic and his hair is coming out—So with that said it was not the best of days- I was reminded by someone that being 2 is hard enough and adding cancer to that is even harder!

I was able to see Grace and the bad bees play soccer which made my day!! Jeff and the kids hung out and had movie night—And a friend showed up with a veggie sandwich from McAlister’s for dinner—along with a bag of “go grier go” bracelets— We did have a few nice visits from family and friends (and a few nurses who hung out in our room) today—it does seem to make the time pass quickly--

I am really trying to find something great to say about today but right now I can not think of anything except I am glad I am CMC today instead of my house, so they can care for him the best they know how-
Thanks to everyone praying for Grier-- we are lucky to have a great support group-

Spoke to soon—We are back @ CMC after being home for 1 hour!

Well- today started with a platelet transfusion— Grier did not feel like eating today and was the quietest he has been since we got here—I did not think he felt well at all! Around 3pm the Doctor came in to talk about discharging us- Everything was set in motion and we were in our car around 5:15- We were at home for about an hour and Grier started crying a little- he was very hot so we took his temp—and he had a fever—I called the number I am suppose to call and they said to bring him up to the Tower to let them look at him—We arrived back at CMC around 7 and they said with a fever we should expect a stay of 3 days- So—we are back in our old room – Needless to say I was very excited to be home for an hour and then the bubble popped for all of us-
Did anyone else notice today is Friday the 13th?