Happy Halloween!

The revised version!

OK-- I try to keep this blog as honest as I can-- but I am not sure most really do not want to hear all the details of the pediatric oncology life!!! After many revisions..... here is how today has gone-

Grier and I left around 10:30 to go to the hospital for his MRI-- Hayes and Grace were out of school and luckily my mom was off from work-- or this schedule was going to be near impossible-Hayes and Grace are getting the shaft each day as this schedule is taking a toll on all of us--- Lately, I have had to cancel school conferences because of a Hospital Stay, leave one or both at home after school and I am always forgetting something-- "surviving" is what I like to call it-- it is not multi-tasking because it is not intentional--- I am always playing catch up because the plan I made 30 minutes prior is messed up by a fever or something new that lands on the schedule-- I have not had too much compassion lately with schedule changes.... and I am not surprised. There really has not been a handful of days in the last month and a half that we have not spent the entire day at the doctor's or were in patient at the hospital-- hard to believe?? The other thing is that with these appointments no one asks me if they work-- it is not a choice-- it is scheduled and you just go-- I guess I could be like the rest of Charlotte and bring them to the LCH lobby and let them hang out-- that has become the daycare of the hospital--- and in my opinion if the "swine flu" is airborne than the under 18 group should not be in the lobby either-- since that is the only way to get to the floors!

Today was no different-- not sure what happens in radiology but being on time is just not going to happen- We waited 3 hours..... I was asked by 3 separate people about the history I just filled out on the profile for Grier--- and by the time it was time to go to the MRI machine--- Grier was DONE- he was fine when we got there but after 3 hours and all the explanations of what has gone on the last months and years and what was going to happen during the MRI he was DONE--- at the very end he just sat in my lap and cried-- very unusual for him to do-- but since he knows so much and listens so well--- he was thinking they were going to put in an IV while he was awake or use his port--- of which neither happened--- he had to breath the gas and then he fell asleep and they used a breathing tube-- which I hate for them to use-- but because they said 4-5 hours that was what they wanted to use-- and guess what-- it was done in 2! BY the time I got to recovery I was asked a zillion more questions about his "cough"--- well.... he did not have a cough before I gave him to you-- and all of a sudden I heard the "cough" and it was low. deep and wet--- I told them this is not how I left him-- and they called Anesthesia-- then it always gets into well-- has he been around anyone that is sick-- ??? And when did he have this lung surgery??? AND the BEST question of the day was.. WHY DID HE HAVE THIS MRI ANYWAY??? I answered no... except for his in- patient stay last weekend at the hospital-- and the surgery was over a month ago and we have not had any issues until now- and I had to bite my tongue about the WHY??? --Obviously he has cancer DR. and we were following up after 2 rounds of chemo!! All questions the 3 asked before the procedure--- He slowly woke up a little and they did chest compressions on his back to break up whatever was in there-- he was waking slowly and very "drunk"-- but we left-- he was awake enough to want a Bennie baby at the gift shop-- so we went it there to choose the new stuffed animal!!! While we were in there and looking he scooted to the edge of the stroller and when I turned to get the animal he wanted he fell out and onto the floor!! The lady was so surprised and he was just laying there and looking at us-- I knew he was alright and I just put him back in the stroller and paid for the animal--- ahhh--- just another day for us!

We got home around 5:15-- looked at a few emails and saw some good news-- with the help of a friend, our seats on our flights are not middle seats all separated anymore-- and we did not have to hope for someone to be compassionate on Monday afternoon! Thanks Deborah for that help!!! :) I was already planning for the three of us to wear masks on the plane in the hopes that someone would just not want to sit next to us and then swap seats!! We went to dinner-- something we have not done in awhile -- pizza at Luisa's --- I was actually out voted--- I just wanted to stay home-- but since we have not all been out in a long time I caved--! As soon as we got there Grier was shaking--- said he was cold and all of a sudden there goes dinner--- we did hang in there to eat pizza but left as soon as we could-- Grier was still saying he was cold and when we got home I checked his temp--- 101.2! FABULOUS--- just when I thought we were done with fever admissions---- I called and because he counts are OK-- I was allowed to give him Tylenol and wait.... we have to go in the morning anyway--! Hopefully we make it all night in our beds and this was just an anesthesia fever!

I guess the details... ( and trust me they are not the whole story) should give you some sense that this is hard as S@#$! And unless I figure out a way to clone myself--- things will just get cancelled or missed-- I honestly need to see if Blue Cross Blue Shield will pay for a full time mommy because I am the full time nurse these days----!! I will let you know what the case manager says to that!! :)

Tomorrow is another day (we actually go to the clinic)... I am hopeful it will be a little easier and that fever will go away -- Halloween is Saturday and I will be so mad if he has to miss it again!! Two years ago he was in PICU at NY Presbyterian on Halloween and it was not fun!!! We have tickets for NYC and they are non-refundable ( and trust me... the airlines don't care if I tell them we can't come because my child is in the hospital because of cancer-they don't have a policy for that!)-- I also just want to get this next step going so we can get a plan of some sort what life will be like in the next 2 months....NOVEMBER and DECEMBER! I have a feeling what it will be and I just need to prepare for the craziness NOW!

PS-- As we were driving home from dinner... Grier announced that he wanted to live at the beach because there are NO DOCTORS there! That about sums it up!! He did add that if he needed a shot at the beach I could do it :) That must have been the fever talking--

We got released from the hospital on Monday Night--- after a quick recheck of his counts they went from .7 to 2.0--- so they let us go home to sleep in our own beds!! Tuesday we just hung out at home and regrouped--- !! I also made flight plans.. Ronald McDonald reservations and worked on our schedule for NYC--- I begged them to change the original date-- and you guys that know Sloan- know that getting anesthesia lined up is hard-- especially last minute... so when I asked her to see if she could change our days I was a little nervous she would just laugh at me.. but she said she would try and she did-- Since she was able to do that I can say we will be at the CureSearch Walk on Saturday-- :)

DAY 17.... that is what today is called--- it is 17 days since the first day of chemo of round two!! And it was a good day... we went to the clinic today and did the usual check up and a blood test-- his counts have recovered nicely and we did the last shot tonight--- I say LAST... but I really mean last for NOW--- :( Tomorrow we go to LCH for a Head and Spine MRI--- it will be LONG-- but he will be asleep and recover in the recovery room after he is done-- I hope we are home by 4 or 5-- Grier has asked a ton of questions today about MRI's so I am positive he is ready--- he may even tell them how it is done tomorrow--- On Friday, we will go back to the clinic and have his blood counts checked again--- just to make sure all counts are OK before we head to NYC on Monday afternoon- When we get to NYC he will have an CT on Tuesday, MIBG injection and on Wednesday MIBG and Bone Marrow test-- We are going to fly home Wednesday night- It will be a quick trip but I know we will be there longer in the near future.

Enjoys the new pictures.... other than the normal craziness all is good at our house right now!! Even the dog was a little pampered yesterday by the mobile groomer!! I told a friend I was jealous my Dog was getting a facial and not me!!! But Tucker sure does smell better :) Grier feels good--- he is eating better without the help of drugs and very active-- he told me today as he was playing soccer that he was ready to get on the soccer field!! Thanks for all the notes and meals -- they have been very helpful and are very much appreciated!!!

Grier is still a resident at the resort we call LCH--- he has not had a fever since Thursday night when he was admitted--- His counts have gone up from .1 to .2 to .3 and today they were .7!!! His blood cultures have all come back negative --- BUT we are still HERE!  He did have to have another platelet transfusion this morning --- Every few minutes he says.. "I just really want to go HOME"--- mom can you tell them we are going home--- I wish it was that easy--:)

Being here this past weekend help the craziness of juggling Hayes and Grace--- Jeff was able to spend Friday and Saturday night at the hospital and I was able to be with H &G-- Also we had my mom helping and lots of  visitors so the weekend seemed to go by quickly!

We have officially started the "work-up" after the 2 rounds of chemo--- Grier did a urine test last week-- I now have the least amount of confidence in that test.... he also had an echocariogram on Friday---   This Thursday will be a BIG test-- He will have an MRI of the head and spine-- it will be under anesthesia and will last about 4 hours plus he will have to go to recovery-- It will be another long day at the hospital-- And we are waiting for final word from NYC -- we need to have the MIBG and CT done there next week as well as bone marrow tests-- The whle thought of going to NYC right now makes me crazy-- I feel like we have not really been home and now we are getting ready for the hardest part of this next part of the treatment---   

Here is a brief update on the Milestones walk--- our team is very strong and large--- :)  I think the last number I saw was over 100-- I want to challenge everyone that has signed up to walk as a walker or in spirit to send 10 emails to your friends--- ask then to pledge $5 or $10-- With a team our size even the smallest donation will make a difference if everyone asks 10 friends!  The t-shirt order has been placed-- Thanks for all the timely orders... If you want to help distribute them email gogriergo@att.net--- Most likely I will be gone so I will need lots of help getting the shirts to people-  

That is it for now-- Hopefully the good news will start coming in from the work-up and we will be back from NYC before we are even missed!! Ha!Ha!

fever---

Grier is at CMC because he had a fever last night.... because he is neutropenic.. ( see explanation..) we have to go inpatient-- it is better safe than sorry--- it is much more than feeling bad...

I knew this was coming-- it is day 11 post chemo and it happened day 11 last time-- so we stay at LCH until his counts start to recover -- the "g-shot" will help this happen-  He is not so thrilled with the idea of another sleep over-- last night was a little long due to the fact we did not get to LCH until 9:45-- and around midnight we could finally settle and think about going to sleep-

Neutropenia

From Wikipedia, the free encyclopedia

Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

If you did not see the blog about the walk T- shirts--- please look at it .... if you are interested I need to know the size you need by Sunday--  If you are new to paypal... here are some tips--- ( thanks Natalie!!)

Go to www.paypal.com

Go to Account Login, enter your email address and PayPal password then hit Log In

If you don’t have a PayPay account, click on sign up.  It is very easy and you can choose different ways to pay – checking account, credit card

After you have Logged In, click on the 2^nd blue tab at the top of the page that says “Send Money”

Where it says “To” type in gogriergo@att.net

The amount you want to send

The button will automatically default to “goods”

Hit Continue

You then get a message that your money was sent to Amy and you are finished!

Want a Team Shirt to wear for the Milestones Walk???

The Go Grier Go team will be wearing red shirts this year for the Curesearch Milestones walk on Nov. 7th----

IF you want to order a shirt-- please email gogriergo@att.net with the size or sizes you will need--

Youth S-L

Adult S-2XL

ALL shirts are $10 each--

You can pay online with paypal-- email address gogriergo@att.net or by check made out to go grier go when you pick up the shirts!! ONLINE will be easiest for ALL!!!

I MUST HAVE YOUR ORDER BY SUNDAY, OCTOBER 25th--- to make sure shirts will be here in time for the walk-

IF you are not walking and would like a shirt--- please email gogriergo@att.net-- We will get them to you--

Sorry for the close deadline--

Amy

"Today was definitely a LONG day"

I wanted to do this Blog early before I forgot all the crazy details of this day.....

We got to the clinic at 9:30--- and for the first time in a LONG time I did the valet at the clinic--mainly because I am so tired of driving in the parking deck-- I swear I need a smart car to fit into those parking spaces... and the other day I decided I was just taking 2 spots.... it was going to be easier to get Grier in and out-- so I DID!-- Well-- some woman who had nothing else to do decided to scream at me --- She was mad I took two spots ( I was on the 5th level!!)--- I smiled at her as I loaded Grier into the stroller and turned it to face her and said-- Have a GREAT day! Anyway... that is why I needed a break from that awful parking deck near the clinic-- BUT that was mistake number ONE----

They accessed his port in clinic-- gave him the "G-SHOT"... and Dr. M looked in Grier's mouth---- ( he has a mouth full of sores....YUCK--- they are from chemo and he has chewed the inside of his lip a little--- really not a problem for the normal person BUT a HUGE problem for someone who does not have an immune system... like Grier!! Dr. M gave me another prescription called magic mouth wash to help with the pain-- I decided to take it downstairs to the pharmacy to get it filled while we waited for his lab work to come back--- After all this we went back up to the clinic and found out that he needed red blood and platelets--- Arrgh--- I knew that takes at least 5 hours--- if everything is running well-- We tried to start platelets but the infusion room was FULL-- so we went back into an exam room-- not a big deal--- unless all of a sudden your stomach starts cramping and diarrhea happens--- REALLY?? I never saw that coming-- I was a little worried I did not have any extra clothes since the restroom is really far away from the exam room-- so I asked for a pull-up and all they had was a 2-3---- surprisingly it fit-- snug... but he could get it on :( That would be MISTAKE #2--- not being prepared!! Finally we were at a point we could hook him up to the platelets and start-- we then had to walk over to the Day Hospital to finish platelets and start blood--- Well--- it is 1 at this point and I am doing the math with the time and wonder how I am going to get my car from Valet in the other building-- Everyone was very nice and said security would get my keys but I would have to walk Grier back over to the clinic after the infusion was done--- All I could think about was the under 18 rule!! It was going to be an obstacle-- !! Grier continued having stomach problems but luckily we had a infusion bay close to the bathroom--- I finally called to get Imodium--- BUT that was the next obstacle--- I could hear our nurse call pharmacy to see when it was coming and the last time I heard her say-- it has been over 3 1/2 hours--- ! It had--- I told her I was going to move my car from the other building to the deck closer to LCH and while I was there I was going to buy some Imodium from the pharmacy! She said-- I am calling to tell them what you just said--- and she did-! I left and almost ran to the clinic to get my car and the Imodium while Grier hung out getting blood with the nurse-- As soon as I got back-- guess what was on the counter.... Imodium!! So, we now have two bottles to add to the collection!

As you can see by the pictures you can see that Grier perked up --- He looked really bad this morning and after the transfusion he seemed to be feeling better--- except for his mouth-- We finally left the Day Hospital at 6:35--- And as soon as we drove in the driveway.. Grier said, " That was definitely a long day!"

The good news of the day was that we have a T-shirt design for the Go Grier Go team --- I am going to post it as soon as I can and I am going to need a QUICK response if you want to get one-- I will put all the info out on the BLOG or CB as soon as I know--- This is not a MUST if you are walking -- This is also not a FUNDRAISER--- It will just be a team shirt to wear on Nov. 7th--- I can't wait to post it because it looks pretty cool! So... think about sizes you will need so you can get back to me ASAP as soon as I ask for the info---- NOT NOW!!!

And on the dishwasher front---- it was put in today!!! I had lots of help today between Nancy picking up Grace, Michael coming to my house to meet the dishwasher guy, Jenny dropping Hayes off, and dinner!!! Thanks---

What a DAY!!!

Amy

We are still at home at hanging in there--- Grier felt great for most of the weekend-- It was a welcomed change... his appetite was good as long as you were getting anything he was asking for to eat!! We went OUT of the house on Sunday for a quick outing to see Cake Boss make a HUGE Nascar car cake--- He had fun... but Grace really seemed to like it-- It was just nice to go somewhere !!! He is begging to go to Target-- he asks all the time if his counts are high enough to go!!

He and I went to the clinic for a quick visit and to check counts on Monday morning--- His counts are dropping and almost at 0!!!! I was really hoping for a quick visit to his class but was advised otherwise-- and it turns out it is good that we did not go visit-- Even a cold is not good when you are nutrapenic! So.. I went to have my car serviced since the "light" had been on for awhile.... my mom hung out with Grier and I thought it was going to be a quick service--- until the guy said, Mrs. Christenbury.. I have some bad news-- I thought of course you do--- he told told be we needed new brakes and I said OK-- is that it???? He just doesn't know bad news!!! After the car dealer I had to quickly find a dishwasher--- since ours broke on Friday night and deemed not worth repairing--- :) Two things I could fix without much effort--- The biggest problem is juggling it into fitting in our hospital/clinic schedule-

Grier has gradually gone down hill since yesterday--- energy level.... appetite... and mood--- I think he will need a blood transfusion tomorrow-- he seems pale and tired-- He stills says some funny things--- Today he was feeling his head and I asked him what he was doing? He told me he was checking to see if his hair was coming back yet--- and then he said... "Do you think it will be blonde or black?" hmmm??? I am think brown but you never know! :)

So many nice things have happened to Grier and our family lately-- I am not going to list them all but thank you for everything--!!! I know I will never be able to keep up with thank you notes- so please accept the blog as a GIANT thank you-

Shots start tomorrow-- I am wimping out and taking it to the clinic for them to do-- the last time was not so great at home--- ( it took 3 pokes for me to get it in the skin--- Grier begs me to do it--- but I am not great at it-- :) I am hoping for an uneventful clinic visit, no fevers and a dishwasher delivery --- not too much to ask... right?

pictures--

Grier doing his "homework"---

Grier and Grace at the convention center to see Cake Boss-

Grier with his favorite cake--

Grier hanging out at home--

TGIF!

TGIF! We made it through this week of chemo~ The best part is that we only spent two nights in the hospital... got home by 3:30pm on Wednesday... and have slept two nights at home!!! Not bad for the way it has been working out lately--

Grier feels good-- I would say great but he gets waves of feeling queasy and has had some headaches that bother him. These side effects are totally different than the first round--- I am hoping this goes away this weekend as we get away from the poison that has run through his little body all week! He has really surprised me this week with the way he has taken this new routine and gone with the flow--

We are now on the part of the schedule that we call "fever watch"--- his counts will drop to 0 and we will have to start giving shots again on Wednesday to increase his counts-- we will also have to monitor his blood and platelet counts because he will likely need some transfusions- MOST likely we will have another stay at LCH if he gets a fever--- but we can always hope his counts will recover before this happens! We will probably find out Monday when we go to NYC for scans-- and then what the plan will be from there-- I am anxious to see what they say and see if Grier can get back to being a normal 5 year old--

That is it for now-- we are going to enjoy the weekend !

Thanks for checking in and THANKS for signing up for the food tidings plan

http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=45f1fdb7-57c5-40f3-b006-a284cb80fffb

--- I talked to Jeanna and we will add more dates as I find out the next plan of Grier's treatment-- especially if staying in NYC for a long period of time is required-

Amy

Wednesday????  How did that happen?  Monday night was as long as I had hoped it NOT to be-- They started Grier's chemo at 6:30pm--- so he had to pee hourly until 2:30am~  He was pretty funny until midnight when I was so sleepy and he was asking me a ton of questions about rolly pollies!  We had just watched Sid the Science Guy on PBS--  The 1:30 and 2:30 pee collections were a little hard-- he was in deep sleep and when I would try to stand him up his legs were like jello-- but we made it through- and slept until 7:30 before our day started again-- 

Yesterday, Grier felt really good in the morning and most of the afternoon-- we went to the playroom to play the wii and he played a few games of trouble--- We had some visitors -- And my mom came to stay with Grier a little so I could go home and be with Grace and Hayes-- Late afternoon came and so did some side effects from the chemo-- he felt pretty crummy-- Jeff and I did the switch and by 9pm Grier was perking up a little-- not eating but wanting to play with his new toy! We had to do the hourly pee collection again last night but this time it was a little longer because I could not get him awake enough to go at 2:30-- so we waited another 45 minutes and he went and he is done with Cytoxin for this round!  He woke up around 8am and is not feeling the best-- no appetite and just hanging out watching TV-- looks like that is not a bad idea from what the weather looks like  from the 11th floor window-- 

He has to finish the infusion that started around 6 last night and runs for 24 hours-- and he will get the 3rd dose of irenotecan today around 3-- then if all goes well---- we can go home to sleep in our own beds tonight--- We have to finish the other infusions on Thursday and Friday in the clinic this week- 

Please see this note from Jeanna--- 

Friends wanting to provide a meal click on Food Tidings under the account Go Grier Go! Amy finally agreed it would be very helpful for her family! Thanks http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=45f1fdb7-57c5-40f3-b006-a284cb80fffb

Hopefully the next update will be from home --  I can not believe we are almost finished with the two rounds of chemo and almost ready to go back to NYC again for scans-- the weeks have flown by -- Time flies even when it is not fun!

Two Updates in One day!!!

Well-- forget my first post today--- We got to clinic about 9:30--- and did all that we needed to do--- His counts were high enough to start chemo so we headed over around 11---- And Chemo started around 5--- Seriously-! The chemo that requires so much monitoring did not start until 6?? so it will again be a long night at LCH-

Grier is in a great mood to be in the hospital-- maybe he is used to this new routine--- who knows! He has been playing with playdoh and decorating cupcakes--- ( see pictures) And he is sporting his new skull hat :) Thanks Caldwells!!

The last picture is of the dinner I made yesterday-- I thought I was doing well--- planning for the week and ready for this craziness--- BUT burned the white chicken chili while I was reheating it for dinner tonight!!~ so it was a take out night for us!!

I got a feeling!

I am sitting here listening to one of Grier's new favorite songs, I Got A Feeling by the Black Eyed Peas--- and hoping that tonight will be a good night~

Grier and I have to go to the clinic this morning to check his blood counts-- if everything looks good we will be admitted from clinic to start the 2nd round of chemo--- I would like to say last round but I do not want to be too positive ( NYC will decide that after this round - we go to have scans in a few weeks)-- The plan is to start as soon as we get to Levine's ( or better yet as soon as pharmacy gets the chemo to our room--) I know they know I am not letting them start chemo at 10:45pm this time-- so that is why I am hoping for a good night! We should have "two sleeps" at LCH and then be able to leave after chemo on Wednesday -- we can finish the remaining 2 days in the clinic-- I am also hoping the irenotecan aka ( "I run to the can" will spare us that side effect this time!!)

I am way behind on emails and other things--- that is just what happens when you are trying to take care of a house, kids, dog, etc. meanwhile going to the doctor almost everyday last week!

We had a pretty good weekend-- Grier was excited to get to go to Grace's soccer game--- he said " Are my counts good enough to go somewhere?"--- Since we were outside we thought it would be fine-- He was surprised with an Alabama Jersey and a car visit from Leila-- he has not taken off the jersey since Saturday-- and our house has the Halloween look now with the help of 2 BIG blow-up pumpkins that Brandi and Rob brought over! We also had a wonderful dinner from a friend that I met through my NY friend, Gretchen ( Liam's mom) and lots of yummy cookies that Thomas and Neil's family brought-- as well as another bag goodies from Zeke-- the binoculars are in the bag to go to the hospital ( so we can spy on people from the 11th floor of the children's hospital) Now all we need is a front room so we can see the creek and Kings Drive!! Also a special thanks to Chris and Kristin Kouri for raffling off an item in honor of Grier at the auction she was putting together- Thanks to EVERYONE-- and excuse this public thank you note but it is the best I can do right now!!

If you have time check this bog out today--- here is the link and I think you might recognize someone in it--- Don't Eat the Shampoo -- Philosophy has added another flavor since the Oatmeal Raisin sold out--- but they still donate 100% of the sales to Cookies for Kids Cancer- Makes a cute gift--- and makes bath time fun--- Grier loves smelling like a cookie after bath--- :)

Another exciting website to look at is Glad to Give--- Glad has partnered with Cookies for Kids Cancer and taken the bake sale to a whole new level!!! They are also matching funds raised from bake sales --- The pictures from the bake sales that Glad has done are amazing-- if you are on facebook join the group-- you will not be disappointed-!

Join the Go Grier Go team today---

Hello everyone!

The purpose of this post is to let you know about an exciting cancer walk that we will be participating in again this year in honor of Grier’s fight with Neuroblastoma as well as every other child’s fight with this awful disease. The 2^nd annual Cureseach Milestones Walk in Charlotte will take place on November 7th. Our team name is “Go Grier Go.” We would LOVE to have a nice large team join us for the walk. Please think about organizations you belong to and encourage them to join our team or make their own team—school, church, youth group, teams, service groups, moms groups, sororities, preschools, and work—This is an easy way to make a difference for children fighting cancer- If you would like to join us and be a part of the “Go Grier Go” team, it’s easy to register online. Here are all the important details:

Who? Anyone that wants to be a part of “Go Grier Go” team and support research for childhood cancer.

What? “MileStones” is the CureSearch Walk for Childhood Cancer. It is a pledge walk that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure.

Where? Freedom Park, 2435 Cumberland Ave., Charlotte, NC 28203

When? Saturday, November 7th, 2009~ Registration and Check In @ 9:00am & The Opening Ceremony and Walk @ 10:00am

Why? To increase awareness of childhood cancer and to raise the revenue needed to support the life saving research conducted by the Children’s Oncology Group. . Proceeds from the walk will benefit CureSearch: National Children’s Cancer Foundation. The NCCF provides funding for the vast majority of pediatric research programs at the top 200+ children’s hospitals, including all local children’s hospitals that treat our youngest cancer warriors.

DID YOU KNOW:

Each year over 12,500 children and teens are diagnosed with cancer, the equivalent of two classrooms a day. Childhood cancer is the #1 disease killer of children, more than the next four childhood diseases – combined! Although the survival rate for childhood cancer has greatly improved over the last 30 years, still today as many as 1 in 5 children will die of their disease. Those who survive their harsh treatments are often left with life-long serious and life threatening side effects. But there is HOPE. Through research we can reach the day where all children diagnosed with cancer are guaranteed a cure.

Childhood cancer does not distinguish by demographics; there are childhood cancer warriors and angels throughout all our communities. Too many families in our area have been directly affected by childhood cancer. We are united through the Milestones Walk to raise funding for childhood cancer research as well as raise awareness of its devastating effects on children and their families. We now ask that you also join us in our fight against childhood cancer.

How do I register? It’s simple to do online! Just go to: Go Grier Go Team @ milestones walkand click on the green rectangle that says, “Join a Team.” Then type in “Go Grier Go” in the team name box. Follow the instructions from there. It only takes about 5 minutes to register! The registration fee is $10 /per person attending the walk--

I want to be a part of the team, but I don’t live in the Charlotte area? No problem! We’d still love to have you join “Go Grier Go” You may register on the website as a “virtual walker” and still help raise funds for CureSearch.

We really hope that you are able to join “Go Grier Go” for the CureSearch MileStones walk. If you have any questions please feel free to email me. Thanks!

Join the “Go Grier Go” team today as a walker or as a virtual walker AND commit to asking 10 friends for a pledge ~no amount is too small—Together we CAN make a difference in Pediatric Cancer-

Amy and the rest of the Christenbury Crew-

http://www.caringbridge.org/visit/grierchristenbury

www.curesearch.org

www.milestoneswalk.org

P.S. We may have team t-shirts made for the race. When I have more details about the t-shirts I will share it with you.

Another Day at the Clinic!

Yesterday we went to the clinic and had Grier blood count checked--- he was OK but his platelets were low--- we could tell this before the lab said so because it took some pressure to get the port to stop bleeding.

Grier and I left and have been hanging out at home-- he is so funny... He asks if his counts are still low everyday... and I finally asked why he was wondering and he said because I want to go somewhere!! He also has been watching lots of TV and commercials and his want list is growing by the second-- I told him he needed to get a job for all those things he wanted and he told me he couldn't because his counts were low and he can't go anywhere!!! hmmm.. I said this was a whole new experience with a 5 year old!!!

We are on our 3rd night of giving the shot he needs at home-- last night we had a little issue of getting it to stop bleeding because of the low platelets and we always have the issue of the high pitched screaming that makes me a little more nervous than I already am--- Hopefully, tonight will be the last night for a little bit until next round-

Last night was a little crazy. Hayes came home early from his baseball game not feeling well-- I knew it was going to happen sooner or later but I was hoping we were going to escape the "stuff" going around--- He ended up staying home today because he does not feel well-- and has flu-like symptoms except for a fever--- so we are doing our best to keep everyone separated--

enjoy the pictures-- they were taken today at clinic while Grier was getting a transfusion of platelets-- He worked really hard painting a witch--- He is very into Halloween decorations and has been begging me to get ours out of the attic-- I am slowly getting there !!! I will work on that this weekend because it will be here before we know it--- The picture of him without the hat was taken because he looked at me and said-- I think I want to take my hat off--- I said OK-- and he said but what about this???(He was pointing to his bald head)-- So... I decided to take the picture of him and show him it is still Grier--- and he said that he looks like Hayes-- !!

Thanks for checking in-

Amy

Re-Entry

Re-Entry....... Anytime you go away from your normal routine it is hard to come back to reality. This weekend was no different than any other time except we missed having Grier with us in Charleston. Hayes and Grace had a great time this weekend and I think it was exactly what they needed ( neither of them wanted to come home!)-- and I enjoyed being with both of them without having to worry about if something was going to happen--- Grier had a great weekend too--- He was well taken care of at the hospital by my mom as well as many visitors, Susanne & George, Bill & Ross-- they "babysat" him so my mom could shower!! He was very busy painting this weekend and I have a stack of new pictures. He also has a new litter of kittens-- I am sure the gift shop loves that he is a patient!! He called early Sunday morning to tell me he wanted Grace's team to stop winning--- he was ready for us to come--- I guess he thought we were there to stay until they lost-- I told him we were coming home Sunday no matter what--- Grace's team ended up winning all four games and were the winners of their age group!! We headed home after the girls got their medals --- I was really hoping to head to our house-- but Grier's counts had not gone up enough for the docs to feel comfortable with discharging him-- so when we got home Jeff went up to the Hospital to see Grier for a little bit-- I packed another bag so I could stay the night at the hospital and got Hayes and Grace ready for school and bed-- And in a split second we were back to passing each other in the hallway and updating by cell phones-- As I got back to the hospital I saw another mom with her daughter doing to the same thing our family was doing Friday night--- standing on the corner and waving up to their child who was at Levine---- I know that not allowing kids in the hospital is a good thing right now for the protection of the patients but it is really hard-- we can not eat as a family like we used to and I have to leave H&G home a lot as Jeff and I have switched places-- Monday morning all was the same-- Grier's counts were still the same-- his ANC was almost nothing--- and we were really just waiting for his counts to start to recover.... he had not had a fever since Saturday and every test was negative. Even the flu test--- :) The decided we could go home--- so we did! Grier's hair starting falling out this weekend and by Monday it was REALLY bothering him--- he would lay down and end up with his whole shoulder area covered with hair-- so we decided it was time to cut it- He was OK with the idea and we talked about new hats and such --- Jane emailed me and told me that Neil ( her husband) was off today.... he works at Salon on Selwyn and would come to our house if we wanted him to--- it was perfect timing and since Grier still has no immune system I felt better about not having to take him out in public--- Neil came and gave Grier his latest buzz-- After Neil left Grier was a little quiet and then the quiet turned into to crying--- HE said he was NOT going to school looking like this and it was too short!! He also said his girlfriends were not going to like his hair-- not sure where that came from!! After explaining to him that his hair was falling out because of a medicine called chemo he was a little better but not much--- He talked Jeff into going to get him a new hat since he could not go--- and they talked to each other while Jeff was at LIDS and Grier decided on an Alabama hat--- :) Grier has no real favorites--- he just tries ALL teams--! There was a lot of drama last night night but he seems to be better this morning-- The hard part will be as his re-enters each new place sporting his new "do"!!! He is very aware of reactions so please be careful--- I know kids will not know what to say but I can only hope for the best! We have to continue with his shots this week and go to the clinic once maybe twice to check counts-- He is scheduled to start round 2 on Monday but his counts have to be good enough to do so-- He is on periactin ( it helps his appetite) and finished the second dose of tamiflu today-- I am going to update soon about the Go Grier Go team that will be walking at the 2nd Annual Curesearch Milestones Walk on Saturday, Nov.7th @ 9:00am-- it is growing daily and I hope we have a super turn out like we did last year-- I hope if you joined the team last year you will come again--- also I would love to see everyone ask 10 people to sponsor you for $10 each if you are on the team-- It is really hard to get corporate sponsors this year so it will be up to walkers ( including spirit walkers) to raise some money for a cure- I am the team captain but I am looking for someone to take this from me-- I also would like to do a team T-shirt but I can not be in charge--- if that is something you are interested in.. please email me- amychristenbury@att.net-- I would love to do a race like T with business sponsors on the back so if you know how to do this please email me too!! More on that later--- the bus just came and I am switching hats!!! Amy

GoGrierGo team link---

click on join team--

96 cents of every $1 goes towards finding a cure for pediatric cancer-- even the $10 walker fee--

http://host.curesearch.org/site/TR/Walk/Milestones/80174482?pg=team&fr_id=1300&team_id=5710