A CRAZY WEEK---

We are back from NYC-- I know some are wondering why I have not posted anything in awhile so I thought I would do a quick update-- Grier had 2 days of tests in NYC-- the same ones he always has so nothing was out of the norm. He was a trooper as usual-- I really can not explain what he actually has to do in a short amount of time--- you would be amazed! And the best part is when he leaves the hospital doors he seems to be OK-- He likes NYC for a few days at a time-- actually I like it for a few days-- so this trip was almost perfect-- we arrived Monday at 6pm and left Wednesday at 7pm-- I do not know any details of the results-- We have to wait on those to see what clinical "trial" Grier can participate in-- That is the part that makes me crazy-- there is nothing out there better than a "trial"! I am not going into details but we are in for a long couple of months with lots of NYC trips-- and the hard part will be to balance NYC life with CLT life because that is just as important~

Tomorrow is a big day for the Go Grier Go team--- we will walk and participate in the 2nd annual Milestones Walk at Freedom Park--- Our team is almost 200 people strong this year and there are several people on the team that have raised over $500 on their own-- That is AWESOME!!! The only way we are going to end this madness is through research so they can find a cure and I am proud of our team for stepping up and making a difference- I got an email from someone and they said they walked in the Avon walk and it raised Millions and she hoped someday that would be the case for pediatric cancer--- I agree but until we ALL make kids a priority than it will not happen--- I think the nicest thing you can do is help raise awareness in honor of a child-- There was a bake sale at the Rogers home last weekend-- they raised $200 for Cookies for Kids Cancer in honor of Grier-- I hear they had a good time doing it-- It is those things that make me smile-- Thanks to all that helped!!!! I was also told of a bake sale in the works-- and it sounds like it will be awesome too--- this helps me more than you know !

Watch this video-- I promise it will inspire you to make a difference --- I get asked all the time if I need something--- and I don't know what I need most of the time and sometimes I need things that no one can give me but by doing things like having a bake sale helps me by knowing that you are in this fight with us--www.youtube.com/watch?v=Lr03uNt4dLk-

I have a new brand I love and that is GLAD--- finally a company to step up and make a difference for children-- www.gladtogive.com --

Thanks to all those who are walking in person or in spirit tomorrow in Charlotte-- I hope with increased awareness and funding more kids will reach their MileStones without dealing with cancer and the side effects from the current treatments available-

See ya'll at 9:30am --- if you are coming to stroll around the lake- more to come later---

Amy

Next on the Agenda!

We are packing up Halloween Stuff around here--- no time to waste because we are leaving tomorrow for the Big Apple-- Halloween was fun but very WET--- I can not believe we even attempted to trick or Treat in a downpour--- As we were walking up towards the haunted garage, Grier said "Do you think the creek will flood again??" That might tell you it was not just sprinkling!!! He ended up having a great time-- even though he said it was the worst Halloween EVER!

Laundry is getting done around here and lists are being made so I can leave with Grier and my mom to head to NYC-- we leave tomorrow around 2:30--- We do not have to go to the doctor tomorrow so who knows what we will do when we get there-- Our day will start early on Tuesday-- and we fly out Wednesday night-- not too bad!

Not quite sure if I am taking my laptop this time--- I have heard there is no service at the Ronald so I may just avoid the headache--- so if I do not update that is why---

AND finally--- Go Grier Go T-shirts for the Milestones walk are here -- and sorted-- Melissa Bond has the shirts that will be delivered to the WDS-- And I have a big box in my house-- Jeanna has offered to bring the T's to the walk on Saturday morning-- if you would like the shirts before I will put them on my porch on Thursday and Friday-- when I get home-- !

Thanks for all the emails lately-- I have been very slow to respond-- but I have gotten them!

Go Yankees!!!

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

Grier is getting platelets and blood right now--- I guess it is a good thing we are in patient at LCH--- because it was bound to happen and because the whole process takes 6-7 hours it is easier to be in a room-

He is in pretty good spirits-- only once last night did he have a fever of 100.7-- and he slept fairly well-- except for being touched every hour-

We are going to start him an appetite stimulant today-- he is down to 35lbs-- from 40-- :( I can not wait to see how it helps-

This weekend we are going to try something new-- Grace is playing soccer in Charleston and we had planned to all go as a family--- but relapse happened.... and we have not done anything we have planned in awhile--- BUT we are going to try to have fun with Hayes and Grace this weekend as Grier has fun at CAMP LCH with Maggie- It will be a little different but since he is not getting chemo and really just sitting there waiting for his counts to go up it will be a good weekend to spend with the other two -- And the new rule at LCH-- no one under 18 allowed did help with the decision to go--
Wish us luck as we go play soccer and Grier has Camp at the Hospital--

Uggh- I am not sure where the stamina I had 2 years ago is now!!! I am tired ... I know Grier is over this and the rest of my house--- Going to doctors appointments has become the plan of the day-- and Grier and I are done with it all!  I have barely had a conversation with Jeff in weeks--- seems texting is the new way to talk-- he is going one way and I am trying to manage what I used to do plus adding the medical director title-- We went to the clinic yesterday and counts were holding their own-- Grier even announced that he did not need blood when we got home-- clearly... not a normal response to how was your day!!  He played wii--- and then the BIG "D" hit again last night--- he woke up this morning and felt warm so we were on fever watch all day--- around 3pm he spike to the magic point the call had to be made to the clinic--- And they said to come on over so he could be admitted--
This is where is gets a little comical--- The clinic parking is not close to LCH--- go figure since I can place a bet they have the most admissions on a daily basis-- but that does not matter-- I chose to park where I know we will end up and that is LCH--- so it is a longer walk at first but when I am trying to go home quickly it is shorter--- I have Grier... in his "man cave" aka the stroller... and our bag--- we do what we always do walk into CMC to go over the crosswalk to get to the clinic---- oops--- not today.... we were accosted by the under 18 police and told by her we could not go into the hospital--- I tried to explain and tell them he had a fever-- we are on our way to the oncology clinic but NO was the answer!  I really do not have the energy to fight assclowns so I just thought we would walk through LCH--  And they told me we could not walk to the clinic because he is under 18--- NOW....again... I said he has a fever trying to get to the clinic to be admitted--- and she said you are going to have to walk up the hill outside---- because he is  not a patient yet... uhhh... I said maybe not at the minute but we are frequent flyers-- and she pointed to the outside--- I swear.. people are going nuts about the flu-- forget about the kids who have cancer!  
We made it to clinic--- and I do not care about the hike up the hill while I am carrying all kinds of stuff-- because I have done worse in NYC--- The under 18 rule is not that bad but it is hard on families-- Grace and Hayes can not come up and Jeff and I will have to switch in the lobby or just not bring them at all--- 
I am going to sleep before they come in for the 100th time tonight-- It is the most bizarre thing... rest is not something you get here!  

Things are changing a little!!! Grier perked up a little on Saturday night at Grace's family dinner--- he ate a "little" bit and drank a creme soda--- his favorite!! On Sunday, he had even more energy and did not nap--- He spilled the beans about the present he got Grace... but as Grace says... he gave it to me so he could play it--- maybe so but there was a wii marathon in my house on Sunday--- Grier gave Grace wii resort for her birthday and they have loved playing it!! Sunday was a great day for the festival too--- but Grier did not make it to the park-- just asked for a balloon each time we went over there--- :) We are still managing some side effects-- I will spare the details. We are now playing musical beds--- Grier and Hayes share a room and when he is sick we just put him in our room--- he used to sleep in the toddler bed but he is a little big for that now and as he says it is not so comfy!! Plus the crying wakes Hayes so we are trying to balance out who needs the most sleep--- and at the moment the "tween" is the winner! It is almost a no win situation because as soon as we get him back to his room we will be fighting the same side effects again--- So... Jeff and Hayes are roomies at the moment-- Grier had a clinic appointment today-- and after the initial tantrum about not wanting to go to the doctor anymore and screaming about going to the doctor for 20 days straight we made it-- he actually fell asleep from here to CMC--- and most know it is less than 3 miles!!! We decided to do a finger prick instead of accessing the port to check his counts and that went OK---I told him afterwards that his scream could have broken the glass it was so high -- and he smiled-- We left after a quick check up -- they called to tell us his counts and he is nutrapenic ( no immune system) but his blood and platelets are holding steady and he did not need a transfusion yet--- we have to go back to the clinic on Wednesday Morning to check again because it will happen soon- We also start the dreaded G-shots on Wednesday too--- can't wait to tell him that one!!! uggh---I hope I have not lost my touch--- hmmm not sure who I am kidding I was not very good at giving shots. Still praying for no fever-- he is doing better but he has lost 3 lbs--- does not seem like a lot but when you are only 40lbs -- it is !

more pictures on GoGrierGo.com-- they were taken today --- He went out side to practice soccer with Grace but came back in quickly--- he is just not up to that yet- And one picture of him playing the wii--- I should have taken a picture of him doing his "homework"--- it was pretty funny.... I will try to get a picture of that soon-

Cycle 1 -- DONE..... now on FEVER watch!

Oh my gosh-- I think the last three pictures I have take of Grier look the same-- but trust me they were taken on different days! That may give the biggest clue about how things are going around here- Friday we went to the clinic and it was very hard to calm him down and promise that we were not going to spend the night again-- I totally understand since when we went on Monday we were admitted from clinic-- but he was not buying it!! We saw the doctor and guess who did NOT have the flu--- ( seasonal or H1N1)--- GRIER!!! I felt a little like saying I told ya so--- but our doctor said it for me-- he did not think he did either- We did find out that his blood counts are falling quickly from the chemo-- so knowing that made me a little nervous-- because if he gets a fever it will be an automatic admission until his immune system recovers enough to leave and that my friends has no time line-- :( He received the last hour of irinotecan in the infusion room--- he told me he remembered that room-- he might...but who knows-- it is a nice open room with tons of windows and lots of things to do while he is getting chemo or blood transfusions- He played with a remote control car and drove it around trying to avoid tripping the nurses and played NASCAR 2002 on the PlayStation they had--- he was cracking me up as he tried to pick his driver and he was not understanding that this game was a 2002 version and we are in 2009 and some things have changed! After the beep he was de-accessed .. meaning the large needle was taken out of his chest so we could go home-- Not his favorite thing to do at all! We walked to Chick-fila and I ordered whatever he wanted in hopes that he would eat something--- It has been since Monday with not much going into his mouth-- and I will say he took a bite of a chicken nugget when we got home and the milkshake and soup were not even tried!! At this point he is calling the shots -- I just want him to eat so today we are trying a smoothie from Smoothie King and some muscle milk- ( we gave him muscle milk back in 2007 and I am trying to tell him it used to be his favorite and it gives you muscles like ball players--) He is asleep again so I will let you know how that goes! We did make it around the lake for the Festival in the Park-- and he has had a few surprises lately-- Yesterday he woke up and a mom from his class had dropped some cookies off and a note-- he grinned when I read the note and was so concerned that his friend was here while he was sleeping playing and he did not even know it! So as of right now we are on "fever watch"-- I should have a bag and ready to go just in case but have not barely unpacked the other bag! We are being more careful than we have been about hand washing and germs--- I know Hayes and Grace will be exposed to tons at school but we are doing our best to be safe at home- and WASH HANDS--- but 80% of the time you just get a fever because you have no immune system--- I am really hoping we fall into the 20% and skip that admission this time- The good news is that round one of chemo is behind us-- now we manage the awful side effects-- as soon as his body recovers we will start round two- He is having a hard time dealing with wearing a pull-up again-- but we keep telling him it is just in case of emergencies!! I think he is having some tingling on his head because it is very itchy--- I remember this the first time... and it was before his hair started to fall out--- that will be the next "big thing" Thanks for checking in-- we are surviving--- Grace turns 10 this week so we are celebrating that as well-- Amy ps-- Whomever sent me the flowers at home---- THANK YOU!!! It was quite a surprise--

ONE EXTRA "SLEEP"

This picture is Grier and what he did when he got home!! As you can see the couch has been turned into his area!

After another night of hourly urine collection, I was just happy that it was morning and we survived without many issues.... but around 6am the side effects started and Grier and I were battling getting to the bathroom fast enough while pushing the pole along with us- At one point I was running for the bucket while I left him in the bathroom and then the pump decided to quit and have the loudest alarm-- after all that early excitement we got back to bed.
I was determined to find something he would eat for breakfast but failed at that-- he did have some sips of Sprite-- we coasted thru the morning still fighting a fever on and off for no reason they could think of--- but the best news was we could still go home-- So, I knew we could make it to 10pm knowing that--- I left for a little bit and went to get prescriptions that we were going to need when Grier came home-- we had nothing-- ! And then I met Grace and Hayes after school and went to soccer--- really so I could just be outside for a little bit-- Jeff went to the hospital to switch with my mom -- I was coming back after soccer so we could switch again--
BUT the text came in while Grace and I were eating dinner--- FEVER.. 103! I took a deep breath and asked Grace if she was ready and we headed over to LCH-- And what we walked into was not even fit for a MOVIE-- way too much for one family to deal with-- but given that we did not have a choice-- it was handled as best as we could- I can not go into all of it but we had quite a night-
Long story short-- the on-call pediatrician decided he may have the flu-- so they wanted to test him and start him on Tamiflu-- really???? I will eat my words if it comes back positive but I don't think will-- But after she started that process we had to be isolated!! Everyone that came in our room had to wear masks .... Grier fell asleep and I decided I need to talk to someone on the phone-- so I text-ed Anne to call me on the hospital phone since my cell had no service-- We talked for a little bit and I had to go so I told her to call back-- well the hospital cuts phones off at 10--- so I was so mad--- called the operator and told her to let the call come in to our room and she passed the buck to the nurse supervisor-- now I was really mad.... I know why they do it-- patients need their rest... and some people do not have common sense-- but after I explained to them that for two nights they did not care one bit about rest for Grier since they started chemo at 10:45pm-- and I need to talk to someone-
I would like to say I got to finish my call but that is not the case--- !
We woke up this morning and after talking to the doctor he said we could go home by noon-- and we were home at 12:15pm--- He did the chemo at 11:00-- and had his dose of Tamiflu-- still has a random fever --- but they decided to send us home-- We have to go to the clinic in the morning for the last dose of this cycle-- then we wait for his counts to drop... and fever!
I decided after this week if people actually knew the "real life" of pediatric oncology and the havoc it does to a family then there would not be one person not pushing for a cure-
Amy

WE can call this entry take "TWO" since you have to hold your breath and stand a certain way and do something else special ( which I have not figured out yet) to not get kicked off the wi-fi at Levine!!!! My cell does not work either so it is really driving me crazy- Last night was not at all what I had hoped for our first time back--- I asked several times about the timing before we made the Monday appointment to start chemo and was assured that the orders were written and everything would be ready after our brief clinic visit--- Well.... experience had me doubt that but I had no idea we would have been so off--- Basically, we waited around all day.... lab lost one urine collection and then they were not at the magic number so it required lots of fluids and by 10:45 we were ready to start the chemo--- one of which was the 6 hour infusion that requires me to wake Grier every hour for 8 hours so they can make sure there is no blood--- I get the why!!! But the timing in my opinion is unacceptable for a child-- He fell asleep around 10:45pm-- almost as soon as the gave him the anti-nausea meds--- but woke up screaming and shaking around 11:15pm from a bad dream--- after that he was awake so I only had to wake him once around 2 am--- he was wide awake and was not that comfortable--- LOTS of fluids and feeling sick! Around 5:30am we could stop the required urine collection but he still woke up because of the amount of fluids he was getting--- but this time he would wake and go back to sleep--- He has slept all day! Tonight we MUST follow the same time line because making it earlier would not give the bladder and kidneys enough time to recover-- so I think he will be up anyway and I have had a nap so we are ready for the night shift! This has been this hardest way to start chemo because I am trying to be there for Hayes and Grace because I am not out of town but at the same time--- I am not nocturnal-- and I had to sleep today ! I have gotten all kinds of excuses of why.... but the fact is they should not do that to kids! PERIOD! After I left this afternoon I found out that Grier has a fever of 101--- so I am not sure how that will change our plans of discharge tomorrow--- I do know we will not be done until 10pm--- and I have already told them we are leaving no matter what time-- :) Grier is very quiet and does not feel good-- so I am hoping he perks up a bit by tomorrow before we come home--- OK-- off to the baseball game -- and then back to Levine's for the night! Amy

Grier is starting the first of 2 cycles of high-dose cyclophosphamide-irinotecan-vincristine today ( we have been there since 10am so we are still waiting for pharmacy!)
--- I am a little nervous about the irinotecan because it causes a lot of diarrhea- and when we did chemo 2 years ago he was not potty trained so we will see how it goes- The plan is to stay 2 nights and leave after the infusion is done on Wednesday-- then go to the clinic on Thursday and Friday for the rest each day-- We can not do the cyclo out patient because it fries your bladder so you have to make sure you are peeing enough -- this is why I do not want to start this late because he will be up all night--- I guess that is a lost cause now- the infusion is 6 hours!

Grier made the transition back to Levine better than I expected-- He wanted to go to school and I told him we could not go today and he said what about tomorrow??? And then I broke the news that we had to go to the hospital to get some medicine that will get rid of all the bad cells that we can not see-- And then the tears came.... not really because I said we were going to have a sleepover there but because he knows the medicine comes out a tube and he knew his "button" aka mediport would have to accessed with a gigantic gauge needle and he HATES that-- So I had the sales job on-- we were going to play wii--- watch movies... do art.... and I would even get him a goldfish when we got home!! ( The goldfish was from this weekend when Grace asked if she scored 2 goals in soccer would I get her a goldfish--- I told her sure ... :) I was pretty sure that was a safe sure since she is a defender!!) So, Grier got on the goldfish bandwagon!! I guess it could be worse--- a puppy??? Ha!Ha!

After the port was accessed he had to get a flu shot--- so it was a tough morning and we had not even been to the hospital yet---

That is it right now-- try to update tonight--- right now I need to help with homework-- ( Grace not Grier :)

Pray for no side effects--- vomiting and such!!


ps-- I did teach Grier a new phrase today---- with the advise of another warrior... Liam's mom--- Today when he was so upset about all of it I told him he had a right to be mad and he could scream "THIS SUCKS" when he felt mad about going to the hospital and the doctor all the time-- so as we pulled into the parking deck--- I told him to give it a try--- and he squeaked out a THIS SUCKS--- and I told him he had to be louder than that!!! He just smiled and I told him I was OK with him saying that !!! Sorry if you don't agree but it really does suck that kids go through this-!

pictures are from this weekend--- scootering a week after surgery and sporting his new soccer uniform!!! ( Thanks Thomas for bringing it to him)

We landed in Charlotte around 5:30 on Tuesday and it was so nice to see Hayes, Grace, and my mom waiting for us at the hanger--- Grier did really well on the flight and even got to lay down on the couch -- it seemed to help because most of his pain was from sitting straight up-- so we were really thankful we got a flight with Corporate Angels- I kind of think there needs to be a holding area where you can go and decompress before you switch hats from medical director & cancer parent to HOME--- it is a hard transition when you are fighting exhaustion and you know your other kids want things to be normal-- but I guess that would be in a perfect world-- since that is not the case we jumped right back into to homework, signing papers, sports, fundraisers, work, open house at schools, grocery store etc.-- meanwhile caring for Grier who had major surgery a weeks ago- Sleep was not happening at first for Grier.... a little because he still was uncomfortable a bit and he is so "off" that he was up from 2-5am for a few nights--- Now on to the hard part----- I have "written" this update a thousand times in my head--- I was going to tell you how I hate the "c" word--- especially when I hear that invaded a child-- I also now hate the word "goodluck"-- I know some of you are wondering why--- but anytime you go a medical facility they always say "goodluck" as you leave--- certainly I do not consider it to be "luck" to have the "c" word labeling my 5 year--- I know it is not meant like that but just hearing it over and over for the last few years is enough!!!! As we waited for pathology to come back I thought it would be some "luck" to have it say something different than what Dr. Laquaglia thought the something was--- now that would have been goodluck!! On Wednesday, when we met with the surgeon he said he thought the spot was neuroblastoma-- but we would have to wait-- we chose Dr. L because he is a gifted surgeon who specializes in NB so hearing that was a kick in the gut for sure! So... my new word that I happen to hate today is the "R" word--- if you are totally lost at this point I am talking about the word RELAPSE! Pathology came back and it is confirmed that the effing spot that was so small was an early NB tumor- We are waiting on the two offices to speak and get the plan of attack going--- Grier will do 2 rounds of high dose chemo--- we are familiar with this poison and know what it will do to him--- he had 7 rounds last time in 2007--- so I am hoping 2 will be a breeze!! ( I hope someone can time I am being sarcastic!!!) We have been told to expect the normal side effects and fever from being nutrepenic ( no immune system) and lots of blood products-- CHEMO is NO CAKE walk-- As I had many breakdowns in NY I was reminded that relapse is not the same today as it was 10-15 years ago-- I was also reminded that he gets scans every 90 days for this reason.... to find something early...! I guess the part that angers me the most is he looked and acted like any other 5 year old meanwhile NB was starting to invade him again-- no warning, no symptoms, silent and sneaky just the way it started over 2 years ago- And the fear you feel every day came true-- because what they do know about NB is it comes back most of the time- Our plan is to have chemo done in Charlotte.... having Hayes and Grace around even if it is in the hospital and being able to come home for brief times out weighs the benefits of getting chemo at the day hospital and then going back to the Ronald at night- And I have asked a 1000 times... chemo is chemo, right??? NY does not a a special version that Charlotte does not provide-- the main difference is that you have to check in and spend the night at the hospital for the entire round -- Being here will also allow of a little bit of normal... one of us will be with Grier and one will stay at home and take care of all that entails--- it will also allow Jeff to continue to work-- which is a priority.... seems silly but that is how it works! I wish he could "work" when we are in NY but he does not have that kind of job-- Grier will have good days that he will feel good and he will have those bad days too-- on the good days I am going to let him go to school--- and we will lay low on the bad days-- hopefully he will have more good days!! After chemo is complete will will rescan and see where we are in the fight- If you see us out and about please do not ask about it in front of Grier and Hayes and Grace--- I know no one will be saying "goodluck" to us--- after reading this--- but I am a fan of the thumbs-up sign--- !!! As we find out the schedule I hope we can get back into the groove that we were in --- not sure how we did it then but I know it can be done and we can get Grier back to NED soon-- More to come as I know more details and as I process the new information-- we thank you in advance for the prayers, thoughts, and messages--- Thumbs Up- Amy ps-- We have had offers of help already and I have not even thought about it yet--- but I will think of things and it will be posted on the blog--

Preparing to come home!

We are coming home today--- thankfully a corporate angel flight came available  yesterday while Grier was in surgery--- by the time he was in recovery we could tell him we were flying home to Charlotte tomorrow!! I do not think he was overly excited because yesterday's events sent him over the top with anxiety and pain--- more on that later! We leave the Ronald today at 1-- drive to Teeterboro and fly into Charlotte!  Should be home by 5pm- I will update soon with lots of details of what has gone on the last couple of days--  I just need to figue out what to say :) We are very thankful for this company participating with corporate angels--- it not only saves us time and money ( airline tickets less than 24 hours notice are quite expensive!!--- and they do not seem to care why we are booking so late-)  but it will be more comfortable for Grier since he is still recovering from another "crack in his side"-- I can not name the company but it is one our banks!!!  ps -- This picture is Grier showing off his body--- he may have to be Frankenstein for Halloween instead of Jeff Gordon-- :)  I saw some PJ's at target that said Chicks dig scars..... hmmmm???  They are really going to dig G!     

Not much to say about today and last night--- Grier did OK-- he has times when you know he is in a lot of pain and you just hope it is time for pain meds-- He is doing OK drinking and eating.... 
We did not get moving early this morning.... Grier was up until midnight--- and I am not sure how much I slept--- Jeff was sleeping :)  I can tell you that---:)
We got out and walked around a little this afternoon and stumbled into a street festival--- it was OK--- just nice not to deal with the traffic~
Tomorrow we have to be at the hospital at 8am-- not looking forward to it but it was of those things that must be done-  Hopefully we will be able to head home on Tuesday.... really hoping corporate angels still has the flight they told us about on Friday-- we will see!
No pictures today--- it was just a day--- I was going to say normal day but it was no where near NORMAL-

I can not believe we have been here for a week-- I am ready to go home and try to get our family of 5 back into some sort of routine-  The Ronald was "decorating" the lobby tonight and I could not even look--- it was a "back to school" theme-- that is what we should be doing now at home in "Carolina"-- not dosing out narcotics--- !! I hope he has forgotten about the countdown for soccer because right now I would have to wrap him in bubble wrap to let him play-- and I have not even asked the surgeon what he thinks probably because I have a pretty good idea of his answer~

ps-- Jeff was pointing out the typos this morning --- Let me just say I am tired and exhausted--- I do know the difference between a couch and a coach--- and whatever else I got wrong--  I don't spend too much time proofing ---- just trying to keep everyone updated on Grier so spelling errors and grammar does not really matter right now :)-- 

picture is from lunch--- he fell asleep before it came :(
  

Things changed quickly-- in our favor this time!

I have often wondered in the past month how something can change from good to bad so quickly--- and today I got to see something change from bad to good very quickly--- It was just what the three of us needed after yesterdays horrible events- I got to the hospital around 8:30am to find Grier looking not so happy-- he was just staring at the TV waiting for breakfast to come-  Jeff said he had a good night and was awake for most of it-- I think he has been sleeping so much in the day that he sleep schedule is a bit off!  We got him to eat a few bites of breakfast and drink a little---All the doctors started doing rounds so it was one group after another and the word was we might be able to leave the hospital today-- We got him up and walking to make sure he was not in too much pain since we they switched him off of  IV fentanyl to oxycontin-- He did great and kept walking laps around the hospital floor-- Our nurse came by and said we could go as soon as we were ready -  he immediately started chatting and told me what he wanted to wear and was ready to GO!As we were walkig out we saw Dr. LaQuaglia at the door and he gave Grier a high five and said he would see us Monday and then we could go to "Carolina"--- then he started signing the James Taylor song- :)   We walked back to the Ronald and settled in-- I had to go back out and get his Oxycontin filled and get lunch-- when I got back Grier was sitting at the desk coloring and it was great to see-- He was moving all around the room and even squatting to pick up matchbox cars-- I was in awe and all of the last few days seemed a little surreal after watching him--- He ate lunch and you could tell he was hurting again.  He wanted to rest so we got him propped on the coach with a ton of pillows and he fell asleep for several hours-- When he woke up he was not feeling great.. he was wincing as he moved and I knew he was hurting-- it was time for his pain meds so as soon as that licked in we decided to get out of the room--- he needed to walk a little--we went to blockbuster and got a movie and then went by Lenny's for a turkey sandwich to go-- :) That sick feeling came over me as I watched him in pain again-- I really wonder how much pain since I know his pain tolerance is very high-- and he probably does not remember what it is like to not hurt. He ate a little dinner--- got his PJ's on and started watching his movie-- he is multi-tasking a bit -- he is also watching Nascar and Football-- He seems to be more comfortable now--  Tomorrow we will be doing nothing--- we may go to an art place down the street and pain but we will just play it by ear-- I know we have to do laundry-- and after waiting all day for a washer to come open-- which never happened! I am going to drop it across the street tomorrow and the fluff and fold!!!!!!   I have put some pictures on gogriergo.com -- they really show the progression of his mood today- Hopefully tonight will be good and we can all rest-- ps-- I forgot to tell you what happened when I was walking back from the hospital in the rain--- it was really windy and I was going back to shower -- I was about 2 blocks away and a huge gust of wind came and my Life is Good hat went flying into the street and traffic--it was all the way across the street and I said..... ( you can guess) -- I was not going to get the hat-- it was being run over by cabs and really Life was not so good at that moment--- so I just kept walking-- faster--- because I had a hat on for a reason!!!  And all of a sudden this lady taps me on the shoulder and hands me the hat!!! See NYers are nice!!   

Let me see if I can remember the last two days--- they have been very busy and I am going to try to be as positive as I can..... There was a bed crunch so they need to move Grier from the POU ( pediatric observation unit) ASAP--- i felt we were getting rushed out but they kept telling me he was doing well--- Well????? He did just have a major surgery-- not his tonsils out.... but a THORACOTOMY--- As soon as the shift change happened on Thursday morning it was very apparent we were headed to the inpatient floor--- as some of you know I dread that floor--- shared rooms and less supervision is not mu idea of resting and healing--- I pleaded with everyone that came in but basically they needed a room- Around 10-- guest services came to take Grier down to x-ray.... not on his bed but in a wheel chair-- or basically on my lap in a wheel chair--- the only problem was he had not been out of bed yet and that was his first time--- :(  He was in some pain but we kept pushing his pain pump as it would allow !  We got to xray on the 2nd floor and he had to walk a bit... ( first time again) to sit on a stool so he could have an xray--- He still had his chest tube in and his catheter and this was making moving around very difficult-- but he did what they asked and we went back upstairs--- then we were met by PT--- so he got off my lap and walked... or shuffled into the room-- he did have a gown on but his backside was showing because he still had a catheter and we were not able to put pants on yet! Then they did some "games"/ exercises before he could get back on the bed--- his hands were very swollen from the IVs that were put in for the surgery- they wanted him to write his name and he did but I still do not know how--- he cried the whole time and after seeing his hand today I can understand why-  The whole time PT was working on him his nurse was tweeking his IVs that were causing problems and his catheter that was not working-- there was too much going on fr his first time out of bed--  He finally got to rest some and had a few sips of Gatorade-- And soon after they were moving us to the floor-- We packed our stuff ( not much) and carefully picked him up with all his "things" hanging from him and put him in the stroller and wheeled over across the hall--- I was about done at that point and I am sure they could tell---  After all we were working on not much sleep and a lot of stress-- We walked into our room and it was a "corner room'  just like the tiny room that I have terrible memories of from Oct. 2007-- so as you could imagine I was holding back tears and really wanted to wheel him out of the hospital and run-- but we settled in and just sucked it up as we always do-  Jeff went back to the Ronald and I stayed--- Grier woke up a lot-- it was almost as if he was a newborn again-- his oxygen level would dip low when he was sleeping and that still had to be monitored like the night before-- but this time it was me doing it-- He had pain about every hour so we would press his "button" and he had night terrors again-- this was probably the worst....His IVs did not work during the night-- as well as the stpid catheter that was not working well as we left the POU-- not sure what time they worked on that-- Grier was over it-- Jeff came back in the early morning and we knew the goal was to get rid of the catheter and chest tube b/c it would make it easier for him to get up and move-- which is good for his lungs and to prevent complications.Both were out by 11 and then the IVs were not working--so that was being worked on by tons of people-- he had been screaming since the cath was taken out and the awful chest tube-- if you do not know what that is google it-- He had calmed down a bit and we were having him blow bubbles and we talked him into trying to use the bed urinal to pee so we could get him up and moving--- it hurts when a cath comes out because you are irritated and when he went it burned--- he then was shaking all over and I called the nurse--- then we called the nurse practioner because he was shaking uncontrollably-- well, they needed blood to run tests and those IVs were not working so after several people attempting to draw blood and missing they finally called someone from the day hospital-- and she was able to fix the IVs-- Grier was so upset that anytime anyone came in he started crying--- He then spiked a fever and it went away quickly.... and we let him rest!  PT kept coming by but after 2 hours of hell we told them to let him rest.... later the blood they took did not do so they needed more and the whole IV saga started again--- but after the first try.... we said.. stop!  Please call the girl who came from the IV room--- and they did -  Grier ended up losing all 3 IVs and they started a new one today but Connie fixed the problem-- He ate a little lunch.. grilled cheese and a smoothie ---Things looked a bit better than the early morning.  We got him some new pain medicine-- Dillaudid--and got him up and walking and it was like a different child.  He walked and stood up and did games like kicking and throwing for over an hour-- Hopefully we can get him out tomorrow if things stay the same as they have this afternoon -- no fevers are a must and he has to be mobile and not need oxygen while he sleeps-- Jeff stayed tonight so I could sleep some--  I hope when I go back in the morning I will hear he had a great night and is ready to get out of M9- That is it--- I have left out tons of things -- too tired to type them all-- Hopefully we will be  home on Tuesday or Wednesday--- we need to do one more procedure before we can leave NY-

I just wanted to do a brief update about today's events-- it will be brief.... because I can barely see the screen and I can't type without hunting for each letter! We got to the hospital at 6am--- we left the Ronald at 5:45am and walk in the dark the 5 blocks -- it was dark outside and pretty quiet on the street-- We waited-- imagine that??? And finally started the pre-op process--- We had to talk Grier into putting on the gowns but he eventually complied if he could play with Dad's phone-- ragdoll blaster has been quite a bargaining chip lately! He did great as expected-- Dr. L came in to ask if we any other questions and he had to sign Grier's side where he was going to make the incision for the thoracotomy-- he did in purple pen and Grier giggled because it tickled--The anesthesiologists were really nice-- they let Grier push the propofol and carried him to the OR with the promise that they would take good care of him- That was about 7:45am- We went to the lobby/waiting room and waited for our beeper to go off-- and it did around 9:45-- we then moved tp the 6th floor to wait to talk to Dr. L-- he was getting ready to close Grier up-  At almost noon we were taken back to PACU-- and then finaly moved to the POU ( Pediatric Observation Unit)  The POU is a step down version of PICU-  He is there right now--- resting comfortably-- he has talked a few times-- He has a chest tube, catheter, and lots of leads and IVs-- He woke up around 3 and said real loud-- MOM... I have a question??  It surprised me a little because he had been just nodding for a while-- and I said-- OK... what is it?  And he said--- Am I naked under these blankets... ?  We laughed and said-- Yes.. And then he wanted to know about the catheter-! He does have a pain pump that he can push--- but he has not used it yet-- Occupational Therapy has come in to see where he was physically before today--- and that was easy..... he is an ACTIVE ATHLETIC 5 year old- They are going to come back tonight or tomorrow to get him up and moving- The news from Dr. L was he got what he saw and looked all around for more--- we will not know exactly what it is until Pathology comes back but there is an idea- Hopefully tomorrow will be better and we will be even closer to answering Grier's question... Am I done yet?  I know he wants to go home-- I thought Skype would help by seeing everyone but that really makes him asks CAN WE JUST GO HOME?--- And to be honest I am ready to go home too--- ! 

After a few hours of waiting for our 11o'clock appointment we finally saw the surgeon and his team--- signed all the consents and learned about the surgery--- It is call a thoracotomy-- ( I am sure I spelled that wrong)--  In some ways the consult was easier than the last time... I had no idea what to expect and hearing about all the risks that could happen was shocking--- I can still hear some of the original conversation to this day-- Dr. LaQuaglia has a nice soft voice and it seemed more calming today but the same info was shared-- It is surgery-- The biggest difference for me is that last time I knew Neuroblastoma was lighting up in his body and wanted it OUT asap-- this time we are putting a "healthy, active 5 year old in surgery to see what the "bleep" the something is-  And to top it all off-- everyone of the doctors and nurses thought we were in NYC for scans-- because Grier looks so good--- Have you started school yet?? I then had to say... no we are back-- we were here 4 weeks ago and then the tone changed a bit-- because they know --- I guess everyone of the doctors is an exaggeration because there were a few whom I had emailed and talked to on a regular basis the last few weeks--
Here is how tomorrow will work.. we have to be at the hospital at 6am -- Grier is the first case of the day and will start at 7am-- I do NOT know how long-- but depending on the length and how many blood products they needed will decide if he goes to PICU across the street-- or he could go to the POU at Sloan if he is not on a ventilator-  The incision will be mid back area-- not as large as the one he has on the other side-- he will get a temporary line under his collar bone so he does not have to be stuck all the time- Dr. LaQuaglia is going to do a frozen slide of the something -- pathology takes 7-10 days!! Hopefully with no complications he will be ready for the Ronald in 4-5 days-
We are a little numb and Grier is just being Grier--- he is so good at letting people look at his body and press and prod everywhere-- The only issue was the IV again but after it is in he is fine-
 
We came back to the Ronald to get ready to go to the Natural Museum of History when we noticed some Yankee tickets on the board--- So.... instead of sitting here in the box we are going to cheer the Yankees on-- I know... crazy but really we are just going to do it--- It is not like we were going to go to bed early tonight-

I will update when I can tomorrow--- I may have someone else do it-- not sure about Internet connections and timing--

I am still hopeful that this is nothing-- and very content with the fact he is in the best hands possible tomorrow-  We would appreciate all good thoughts and prayers especially tomorrow and while we are inpatient-- 
Amy

ps-- Grier is dressed for the Yankees game---- I will post pictures tomorrow???

Pictures-- Grier on the Subway

Grier at Yankee Stadium

Grier posing at Dunkin Doughnuts

Grier showing me "tiny cups" at the Yankee Store-- 

Grier eating popcorn while yelling ""yets" go yankees..."

We had a very busy Labor Day--- we started off with breakfast at Cafe Luka ( those people are so nice!!) and walked straight to Central Park so we could sail a boat on the lake--- We got there and the boat rental guy was not there... and I was hoping he would show up because that would have been three times trying to do this! We ended up walking around... climbing on the Alice and Wonderland statue, climbing rocks, watching turtles at the turtle pond, and eventually winding our way back to the boat rental area-- with a little help from google maps on our phone!!! When we arrived back the guy was there and we put our name on the waiting list--- waited for a little while and then enjoyed all 30 minutes of sailing a boat--- Grier figured out quickly how you need wind and which way to move the sail-- he had fun and we had fun just watching- After we finished Grier came up with something he needed-- he always does and actually make the trip fun trying to find the item--- He wanted a pillow that has those "bean bag beads" in it--- so we were trying to decided where to go--- and the funny thing was he knew exactly where to go--- we just forgot the name of the place- ! We ended up eating lunch on the way and found the store he wanted to go in--- but the "pillow"was not just right--- seriously he is quite a shopper and it makes me laugh-- he immediately spotted a new pair of what I like to call "coach John" pants aka track pants-- and all requests for a pillow were gone!  I won't go into the detail of the shopping but he did get the pants--- it will be nice to have another pair especially since the weather is a little cooler than expected.....I know some of you are laughing becasue you know what a sales job he was doing-- and really today he did not need to! We ended our day and Grier seemed to have a really fun day-- I just asked him what his favorite thing was that we did or saw and he told me buying the pants!!!! I said BESIDES shopping  and he said sailing the boat was his favorite along with his new pants!! Tomorrow will be quite different-- I know to expect it to be long because tomorrow will be like a "Monday" at the clinic-- and MONDAYS are LONG!  I also know what a consult is like with Dr. LaQuaglia --- my unknown for tomorrow is all Grier's observations and questions--- so we will see how that goes.  As much as I would like tomorrow to answer the questions -- it will not-- it is basically a formality--  Thanks for all the thoughts, prayers, rides, and messages here and on FB---  they do make being away a little easier....  

Fielding's guestbook entry made me think of something--- Grier was sailing his boat next to a seven year old who has his own "sailboat" -- it stays in the boathouse-- needless to say... he was great and actually told Grier he was doing really well for the first time with a "rental"-- that was his words not mine!  Anyway, his cool blue bottom boat with two sails and Grier's #65 almost crashed a few times-- and the other little boy would say.. sorry my fault... but I would see Grier's smile and knew his "NASCAR" mind was loving the near misses with his #65!  ( NOT to be confused with his carpool number !!!  :)  The little boy in front of us got 85!    
There are a lot of pictures on gogriergo.com-- caringbridge does not let you include as many--- none of the cool blue boat.. it was going to fast for the camera phone!!

ps-- Please do not get a pillow--- :)  I am going to try to find one for him-- I need it to fit in the stroller so he can lean on it- And if you see my mom tomorrow wish her a Happy 60th Birthday!! We are going to celebrate when we get home--- :)   

Have you ever gotten somewhere and wondered how did it happen? I am not even talking about the last 2 years.... I am really talking about getting to NYC today!!! Somehow all the packing, list making, grocery shopping, organizing got done and all of a sudden we are back in a familiar place-- the Ronald!!!  Ugggh!  It was 4 weeks ago we left the Ronald knowing about the "something" and here we are again-- We flew JetBlue and had a nice flight--- it would have be a lot nicer if I can figure out how to fly w/o ear pain!!!  But with the TV's and not having to schlep our carry- on around ...we had a NICE flight into JFK-- took a cab to the RMDH... and arrived around 8:15?   There was a little confusion at the check in desk -- they thought we were coming tomorrow-- which we were until we could not get a flight so we came a day early... they tried to say they did not know but after I told them what day the email were sent they found it--- imagine that!  We have a nice room similar to the first time we stayed here-- so that is a plus!  We have done some rearranging and pushed the two twins together so they sleep 3!!   The biggest question of the day is when are we checking out or when are we going home... ( that is from Grier)  and I have to say I do not know!  Not an answer I like --- but it is the truth-  I heard Grier tucking in his animals telling them they were on a trip and we were going home... (pause)  Grier: MOM... when are we going home, like how many days are WE staying here ?  Mom:  I do not know .... we will see what the doctors say... Grier:   ( silence) The most excitement of the day was figuring out how to use Skype-- As you can see from the picture-- we can video chat with Hayes, Grace and Maggie-- Tomorrow the PDH is closed so we do not have to go anywhere near that place-- I told Grier we may go sail the remote control boats at Central Park---  he said OK-- we will see what else we decide to do--- but I am going to try to stay far away from Times Square!  That is it for tonight-- I am tired and Grier has settled down after a quick crash game with his cars and watching a race on TV-- what could be better??? hmmmm... you do not want me to answer that! 

We are on the rollercoaster again!

What a wild and crazy week--- Certainly not what I had hoped the 2nd week of school to be like! I am not going into a lot of details right now... but we are headed to NYC- Not the weekend plans I had hoped for on this Holiday weekend.... ( I was really hoping to go somewhere with Jeff for the weekend sans kids) to celebrate our anniversary which is today--- Oh well-- Here we come again NYC, MSKCC, and the Ronald! In some ways this week has been long --trying to get answers to questions but when the information started coming in it was very fast-- not fast enough to book a later flight, so we will leave on Sunday afternoon-- We did have a flight on corporate angels but they got the departure city wrong and called to say they had made a mistake--- really.... not the best luck! Grier did make it to school so he could meet his teachers-- and his soccer team roster and schedule showed up in my inbox--- ALL to start on the 8th --- but it will all have to wait! We have a surgery consult on the 8th and the OR has been booked for the 9th! My calendar has been cleared... Jeff is coming with us and we will finally get to see what this "something" is-- I know I just made that sound easier than it will be but I am hopeful that he will do better or the same as he did almost 2 years ago! I will do updates from NYC -- and I am hoping we are back in CLT quickly-- Sorry to be so vague but until we have the consult I am going to not guess on any details- ps-- Grier went to his first Panthers game last night with my mom-- he had a great time!!

I am not sure how I can follow Anne’s last post but I will try---

When Anne and I went to NYC with Grier a couple of weeks ago we decided she would write an update for the blog— I really thought it was going to be about the “experience at the Ronald and hospital—“ because unless you are there in person you really do not fully understand and I know I do not adequately describe how hard it is-- Then the words “slight and something” became the new focus and obviously took the tone of Anne’s update to a whole new yet familiar level-

Yesterday’s MRI of the thoracic spine went as planned—We quickly jumped back into a routine that we know all too well at Levine Children’s Hospital. This trip had a lot of “first” for us as we got to experience the new hospital-- We arrived around 12:00 and Grier had been prepped (by me!!) for the fact that he was going to have an IV because I knew he was getting “ milk of amnesia!” aka—Michael Jackson’s drug that he has made famous! He was coping with his anxiety about the IV but I was almost kicking myself for telling him so early! —We were planning on different things he could try this time to help him make it better—this was a conversation we were having—just so he could call the shots—or at least think he was—We decided he was going to wear his Spiderman mask and pull it up high on his face so he could not see the needle--- and we were going to try the magic cream on both arms so the nurse could have her choice of veins- All incidental things to talk about but he seemed to calm down. Our appt was at 1:00—but we had to go over to the clinic (another building!!) to drop off a sample of urine because they want to run that test again—I was pushing Grier in his stroller as we went through the old hospital across the cross walk to the clinic—I was on my NYC pace and giving people “flat tires” left and right!! We arrived back to the Children’s Hospital at 12:30 and waited--- until 1:45… not bad! The waiting room was VERY child friendly—large flat screen with Disney channel—but Grier played with my phone instead!!! We were the only people in the room. They called us back at 1:45 and Grier retreated to the stroller as we went into a holding area and I knew he was just anticipating the IV--- nurses came in and quizzed me on health issues--- and it always makes me laugh when they say.. So other than Neuroblastoma… any other health issues!!! I always so No--- but isn’t that one ENOUGH! I know what they mean—but it is always the question that drives me crazy— Anyway…. We waited some more and then Child Life came in to show Grier a mask? She asked if we had seen this before and we had but we usually do not use gas – he likes to push the white medicine--! She asked if he had a line in or a port and I said no—I thought we would get an IV—Well…. Grier was so surprised when she said No IV until after you are asleep. You could see him mood change immediately and he started chatting and playing~! He colored in his “MRI” coloring book—and relaxed—which was a good thing since he did not walk back to MRI until almost 4pm! He amazed the nurses with how relaxed he was and how much he knew about the medicine and machines--- at one point I said—not really what you want you son to be good at---!

He was done with his scan around 5 and then we went to recovery--- again… another wait for him to wake up! Grier likes to sleep so I was thinking we need to start trying to wake him up or we will be here all day—so I asked for a wet wash cloth and he started moving--- He was groggy but ready to go--- He told me he had plans!! And he did—he wanted to go to Wal-Mart!

We headed home around 6:30 --- It was a long day at the hospital—and I realized that having a 5 yr old going through all this again is different than 2 years ago!!! Oh—the questions were fast and sometimes tough as he watched everything going on around him and in the elevators! It was very nice to drive home in less than 5 minutes and transition from the craziness of the past 6 hours to home— The hospital is very nice and everyone there was great – we even had a visit from our favorite nurse, Susan! And other than Susan-- most was unfamiliar with Grier--- he was young and has vague memories of that year and a half—People remember me but they did not recognize the little boy with hair!

We are waiting now—for what I am not sure—I am going to call the clinic today and see if we have a plan from NYC yet---

I promise to update as needed and I hope you all reading this promise to respect the fact that we are not really ready to go “there” with the kids until we know for sure what the something is! So please read Anne’s last post—I am on the phone or waiting for a call a lot so email is the best way to get me—I may not respond but I do read them J-- As for now we are adjusting to two new schools and I want that transition to be their focus-- It is my hope we can figure this out quickly because I have a 5 yr old ready for TK and soccer--- he WILL get there just do not know when!

Thanks for all the notes of FB and the blog and caringbridge—

Amy

Topsy Turvy!

Anne wrote the blog tonight--- my thoughts are going 1000 different ways---

Amy

Dear Go Grier Go Team:

As many of you know, I had the absolute privilege and honor of accompanying my dear friend Amy and wonderful Grier to New York City, for Grier’s most recent battery of scans and tests at Memorial Sloan Kettering Cancer Center. I had no idea what to expect. We have all read the Go Grier Go Blog regarding these “routine” check-ups—quick walks to MSKCC, lunches at Lenny’s, walks to Time Square, cupcakes at Crumbs Bake Shop, trips to Toys-R-Us, and evenings at The Ronald. Well folks, there is absolutely nothing routine or easy about these incredibly difficult trips to NYC. Truth be told, this was a physically and emotionally exhausting week for us all. In reality, this was a chaotic week filled with miles and miles of back and forth between MSKCC and The Ronald McDonald House, sleepless nights, the constant waiting, as well as the phenomenal displays of unconditional love, fear, optimism, grace, frustration, humor, determination, wishful thinking, risk, laughter, pain, friendship, tears, both stamina and fatigue, devotion, questioning, heartache, and hope. I found myself in complete awe. There were contrasts, thyroid protection drops, urine collections, physicals, scans, nuclear medicine, IV injections, MIBG, bone aspirations, fevers, joint pain, and vaccine injections—not experiences for the faint of heart. It just plain sucked! You’re right, not eloquent words in the least, but I speak the truth.

Towards the end of the week, we felt no news was good news, but before we got on the plane we thought we would check in with Dr. Kushner—inquiring particularly about the CT Scan and the MIBG results. Within moments of our e-mail being sent, Dr. Kushner responded, “MIBG is negative. CT shows very slight enlargement of something (likely scar tissue). Probably nothing, given the negative MIBG scan. But want to be 100% sure, so need to repeat CT in 4-5 weeks, that can be done at home.” Not what we wanted to hear. Our hearts sank. I watched quietly as Amy’s mind went a hundred different directions—processing all the blogs, updates, and outcomes of so many other families also living through this hell. Eventually we gathered our thoughts and developed some questions for Dr. Kushner—Where is the slight enlargement? Do we have to wait 4-5 weeks? Could this change be from a cough he had weeks ago? We waited with bated breath and with tears in our eyes. He replied, “chest. No. Yes.” Again, we wait. And again, it sucks! And yet again, we go on living as if life is normal…all the while knowing, life hasn’t really been the same since 2007 for Jeff, Amy, Hayes, Grace, Grier, Maggie, Mimi, and G-Dad.

This leads us up to today, the day after Grier’s re-scan—only two weeks after the initial sketchy results. So, as a devoted friend, I wanted to take a moment and update everyone on what we have learned today about our chatty, attentive, upbeat, athletic, charismatic, generous, and willful Grier. Yesterday’s CT Scan definitely showed “something.” This “something” is unwelcome, it has grown, and we need to figure out exactly what it is. Currently, we don’t have a precise timeline for the days and events ahead, nor do we know what course of treatment the doctors will decide on. What we do know is that Grier will have an MRI tomorrow at 1:00pm and that he will be flying to MSKCC in the days ahead for a biopsy/surgery by Dr. LaQuaglia. Dr. LaQuaglia is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Grier for 11 hours straight to resect his tumor on October 29, 2007. We are not speculating at this time about what the biopsy results will show. Obviously, this news has come as a complete, devastating, and disappointing blow—especially considering how great Grier looks and feels, as anyone who has seen him about town can confirm.

Amy and Jeff have many things on their plate. Most importantly they feel they must stay strong and focused for Grier, Hayes, and Grace. They respectfully ask that you keep this information to yourself—being sure not to discuss either the knowns or the unknowns with your children, as they have not had the opportunity to process all the new information as a family. We must be sure to give them all the time and space they need, and that they ask for.

If the tone of my message seems a little callous, it isn’t meant to be. It is only meant to give Amy, Jeff, Hayes, Grace, and Grier the greatest amount of practical and helpful support at a most stressful, tense, and chaotic time.

So, here it goes:

1. Please don’t ask questions about Grier when Grier, Hayes or Grace are around. In fact, please don’t ask a lot of questions in general right now about the details or the disease or the possible outcomes. They don’t have the answers and answering them is exhausting.
2. Please don’t call or stop by right now. We ask that you check the blog for any updates.
3. Please don’t ask Grier how he feels or Hayes and Grace how their brother feels. Grier feels and looks great. As a wise woman said, “When people ask him how he feels, it confuses him because he doesn’t understand why people are acting like there’s something wrong with him.”
4. Please don’t ask questions that make them recount the whole ordeal, the facts and statistics, or ask them to speculate about their future.
5. Please don’t be afraid to acknowledge their pain, if appropriate. It’s OK to say, “This sucks.” Oh, does this ever suck! Please don’t ever say “God doesn’t give you more than you can handle,” or “things happen for a reason,” or “you are so strong.” Frankly, these kinds of greeting card clichés should be illegal.
6. Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And please know that the Christenbury family thanks you all for your friendship and support.

With many thanks,

Anne Sawyer Barnette

New school Year and a CT!

Grier and I got out of the house by 7:15 this morning to head over to CMC--- He did great at the CT--- the only problem was getting the IV--- the nurse was OK at best and after she asked why he was already crying because she had not done anything yet... I was OVER her--She missed the first time in the left arm and then wanted me to put the numbing cream on both arms and wait-- Grier said "NO..magic cream" So I told her she could try on the right arm and if she could not do it I was going to ask someone else to do it--Well... she told me she was the only one and I said I would walk over to the clinic or Levine to find someone used to kids-- it was a bit iffy for a moment! She finally got the IV in and off he went into his scan ( I am not sure what she would do he was not still---a lot of kids have to held by several people!)-- The longest part was waiting the hour while he drank his contrast. We just played games and watched TV-- he was great-- I forget how lucky I am sometimes-- I woke him up at 7:00 told him to get dressed because we had to get another picture taken and off we went-- he could not eat until after the scan--and he had to drink 16oz of contrast- he did that with no complaining-- !

We left the hospital at 9:30 and headed to target to get his surprise--- "a zhu zhu pet??" That is a "pretend" hamster ( just my speed these days)! We could not find them and he settled for a Hot Wheels Car!

So.. now we wait some more--- I am so ready to exhale! On a normal scan week it takes me a week or two to get back to normal so this bout of scanxiety is hopefully almost over -- ! I am looking forward to seeing Dr. McMahon tomorrow- Grier has already told me he has not been to that Charlotte doctor in a LONG time-- not sure how he will react in the clinic-- He is right--the last time was December-

Here are some pictures of Grier this morning--- he dressed himself in his Yankees stuff--!!

Grace and Hayes are at school-- I did see Grace before she left and she was very nervous-- I am going to get a picture of her getting off the bus--- Hayes was asleep when I left so I can't wait to hear about his first day of middle school---good thing I am picking up a few boys at carpool today because I know I will get the scoop from them!

one more day of waiting???

Amy

10 days later..... I just found out that Grier's Bone Marrows were OK and his urine test was OK--- It was a longer than usual wait this time with lots of emails back and forth trying to get SOMEONE to look at these results--(Everyone seemed to be on vacation and the ones left were very busy with the patients in town) I was very frustrated because we have never had to wait as long as this to find out these results--- and with the CT showing something "slight" it just made the wait worse than normal! I guess it really does not change anything regarding the follow-up CT but it does make me feel a tiny bit better. The hope is that the "slight enlargement" is scar tissue from his surgical area... I am not sure if I have ever said but his "J" scar is from his belly button .... around to his mid- back area.... He calls it his "crack in his side"--- it does look like that a little! Grier's CT is scheduled and will be done on Tuesday, Aug. 25th in Charlotte--- yes... that is also the first day of school so it will be even more exciting than the "usual" first day of school around here-- I guess I should not be surprised since that is our luck!-- Grier has to be a CMC by 7:00am and we should be home by 11:00-- He will have to choke down their version of contrast and it is 100 times worse that NYC-- but with some bribery he will get it down-- Grier has been very busy since we have been home.... it did take a couples of days to get back up to speed but he is 100%. He went fishing last weekend and had a great time. Grier is ready for TK and soccer.... He has started his countdown until they start.... I am ready for Aug 26th so we can continue with his "big" Fall plans with no complications--- I will update when the CT is over -- Until then we are praying the "something" is scar tissue! Amy

Anne, Grier and I made it home from the whirlwind NYC trip last night-We did all that we had to do at the hospital meanwhile trying to spend some time doing some "sightseeing"--- exhausted may be an understatement !!  As Anne said -the logistics of the trip went well--- we had a great room at the Ronald ( both beds worked... it was not tiny... and it was quiet).  We did not have to do too much waiting... and this work up did not include a MRI so it was one less sedation--  The best was that the Friday bone marrow test got moved to Thursday after his MIBG scan since he was already under anesthesia-- This was huge!!! And would not have happened without the help of a favorite nurse!!  The airport travel was the craziest--- the flight there had tons of turbulence and the taxi ride to the Ronald was awful-- The flight home went well-- except we got stopped by TSA trying to tell us that we had too may bags-- ( 3 people.. 3 bags!! she did not count Grier I guess!!)... security went OVERBOARD on our toiletries... and after we finally made it through and repack all our stuff-- we get to the gate and the agent tells us our bag is too big--- So we asked him to measure them and he was annoyed-- he did and then said well.. 1 one too big but he thinks they all weigh more than 40lbs!  We finally just told him to check all 3!! I was really mad as I watched people bring bags on the plane that were gigantic-- !!  The problem was the flight was over sold and they were asking for volunteers--- thought about it for a second-- but they were going to have to up the offer!!! $300 credit on USAirways was not going to do it! Enough of the logistics--- I know why you are reading this update-- I do know some results and that is the reason it has taken me so long to update-- Yesterday... as we cleaned the Ronald and packed I decided I was going to email and see if anyone could tell me something before we left the city--- It was not 2 minutes after I hit the original send button that I had a response... Grier's MIBG was negative (GOOD).... but his CT shows something....(possibly scar tissue) "slightly enlarged"--- This area has always been there and is NOT something new-- just slightly enlarged. As most of you know I think the MIBG scan is the BIG one --I always worry about that one because it lights up Neuroblastoma-- so negative is good-- nothing is lit up-- But I do know from experience of friends that sometimes a spot does not light up--  He emailed and said  that he wants Grier to have another CT in Charlotte in 4-5 weeks--  I am going to get in touch with our Charlotte docs and get this done sooner rather than later-- We do not know anything about bone marrows or urine so we still are waiting on those tests to come back.   We are in a holding pattern right now as we wait for more results and figure out how to find our what the something is!  Please do not share with children yet-- because this could possibly and hopefully be nothing and I do not want Hayes and Grace to worry for nothing- Grier is fine-- except for the pain from his bone marrows (4) and 4 vaccines he got-- This really slowed him down this time-- He usually does not complain but I could tell by his speed and the way he walked that he was hurting more than usual-   I will update as we know what we are going to do first-- Thanks for checking in- Amy

Our day in pictures- too tired to type!!!

We made it to the Ronald with no problems---- we checked in to our room and then went out exploring in the city-- we made it to the candy store and Grier did some shopping!!! Then we headed to FAO and finally dinner--  

Tomorrow we will head to the hospital early to start the day --- 

More updates to come-- 

Pictures -- (l) Grier eating his "fried egg" gummy-- Yummmm!

                    (r) Grier pulling his luggage through the Charlotte Airport-- knows his way around that place-

It has been a LONG time!

I have had some subtle hints about the lack of updates on Grier so I thought I would catch everyone up!!

 

We were very busy at the end of school,  sometimes I think May is crazier than December—we also have 2 early June birthdays Grier’s (5^th) and Hayes’ (12^th)- It is just crazy at our house. Grier is now officially 5- and he loves to tell you! He had Spiderman cupcakes, doughnuts with sprinkles and a Boston crème pie/cake!! I am going to put a picture of the cake that my mom made—it was good—but he told her next time it should be white instead of chocolate—I think he was a bit confused—he really just wanted a Boston Red Sox Cake!! He switches favorite teams daily for all of you who know he likes the Mets--!!  This week it is Detroit Tigers—you just never know!

 

We all survived the end of school, baseball, and soccer—Hayes graduated from ETES—we are very proud of him—he got all A’s and lots of awards!! Grace finished 3^rd Grade with all A’s and lots of awards too--- They are both looking forward to school next year—Hayes will be in middle school at AG and Grace is going into 4^th grade at Selwyn. Yes—that is a change for both of them! One of the most asked questions lately has been about Grier…. Is he going to Kindergarten? Grier is going to stay at First Pres and will be in TK---! Everyone knows that we “red shirt” our summer birthdays! He is ready to go back to school too! 

 

We went to Topsail at the end of June and had a great time--- we just wished we could have stayed all summer!!

 

July has been a bit slower--- I did not plan any camps—(I am second guessing that today!!) and we have been just hanging out—at the pool, park, and with friends---  Grier did go to Veggie Town (aka Vacation Bible School) and had a great time!  He really likes to color these days so that week he made lots of Art projects--- sometimes 2 of the same one!!

 

Now it is almost August and the second most popular question is… Are you going to NYC soon??? We are headed to New York on August 4^th—I can not believe it is less than 2 weeks away- We are changing things up a little this time--  Jeff and Grace will be at home while we are in NYC— She is going to go to tennis camp for the week and Jeff will be working!  My good friend, Anne has agreed to come with us and help during scan week at MSKCC—I have promised her a nice comfy room at the RMDH!! Grier is excited to show her Dylan’s Candy Bar—He is already planning on getting her some lemon heads! It is a good distraction because he has not asked too many questions about the hospital and what we are going to do there- He does know he has to go for a check up but he quickly changes the subject to what we can show Anne-- Hayes will be in NY that week as well… but he will be playing baseball--- !!

 

I know I have forgotten a ton of things we have done but I think the most important update is our upcoming trip to NYC—

 

Thanks for checking in-

Amy

 

 

 

The results are in!

One week ago today we ended another grueling round of scans --- Grier bears the physical part of all 5 tests but we have the emotional part.  We are very careful to make Grier feel like everyone in the world does this and this is no big deal-- I think he actually believes us.  I know this from funny stories people tell me-- he tells them about getting his picture taken in a "doughnut" machine  (CT scan) or when he was asked about going on vacation... he quickly said he was going to NYC to live at the Ronald McDonald house!!  I always cringe when I hear these stories but I guess it is what it is and it shows he feels like everyone does this sometime in their life!

I think I thought these scans would get easier over time but I am so wrong!  We have gone without treatment for almost a year and they seem to get harder.  I think one reason is because we have met so many people fighting to keep their kids alive and we read their updates and know that the statistics are right--- not good! Relapse happens for NO reason and is unpredictable-- I always seem to hear about multiple relapses right before Grier's scans and it makes me mentally prepare for the "what-ifs"--  I told someone recently I always leave Charlotte with a PLAN A and a PLAN B!  

I hate waiting for tests results and even though we heard preliminary results of the big one ... THE MIBG"  before we left last Friday ... I still wait to hear about all 5 before I really exhale!  I have gotten better about anticipating the calls early in the week-- I know that a couple of the tests take several days and that does not include weekend days--- so Thursday was my guess this week--I also hate to see the area code 212 come up on caller ID--- so I have learned to email Dr. Kushner--- hitting send is really hard because I want to know but also I would rather NOT!  Denial is a good coping skill I have!!  This morning I sent the email I always send.... Hi Dr. K--- any news on Grier's work-up?  I left and took the kids to school and on my way home I was wondering if he had responded yet--  I was not far from home but I had to know so I checked my email from my phone---- I heard the ding... and I was afraid to look--- knowing all too well it could be someone else!!! Well--- I looked and it was from him and I could see most of his email without opening it--- It said the same thing it said in January-- " NO NEUROBLASTOMA... WONDERFUL!   I checked the date to make sure that was from today and then cried--- happy tears!  The rest of the day was spent getting ready for PLAN A!  We have a birthday party to plan for Grier... & SUMMER PLANS for all of us...!  I am so happy I can tell Hayes and Grace that for the first time in 2 years I will be at the end of the year awards at their school!!   I am also thrilled that Grier will finish a full year of preschool--- this has not been done since he was in the Toddler Class at Covenant!  

Thanks for all the notes and messages sent last week--- they help us get through!  A special thanks to Kim Robertson---thanks for always thinking of us during these stressful times!

I will update later-- with pictures of Grier's Super Hero Party--!  His choice in the theme but very appropriate!  He is a Super Hero! 

 

I thought I was going to write a long update tonight about our CRAZY day of waiting--- but I am too tired!  

We were told to be at the hospital at 10:30 for our 11:30 MRI--- so we were there and that is when the wait began--- Let me just say that by 3:30 Grier was finally taken back for his MRI--  Apparently, this day was full of emergencies and since Grier had anesthesia with the MRI and then Bone Marrows right after it-- we just had to go with the flow- and if it were Grier in an emergency I would hope people would do the same and not complain-  This is an extremely busy place -- we met lots of people in the waiting room today-- Grier entertained them with his southern accent so it helped pass the 5+ hours!  The hardest part was not eating or drinking (NPO) since last night at dinner-- Grier is really a good sport about that I on the other hand need some caffeine !!!  He knew he was going to eat a Willy Wonka bar that Jeanna got him and that is what he did after he woke up-

We got back to the ronald around 5 --- I was so glad we did not try to change our flight-- that would have added so much stress to this day.  

We did get a quick moment with a doctor and he said the prelim of CT and MIBG are negative--- we still need to hear about MRI, urine, and BM--

I will update more from home-- this day was mentally exhausting-- I watched so many people get bad news... it is something I dread to see at Sloan--because as with the emergencies that happened ..I know the roles could be reversed at anytime--

We should be home by 8 :30am so I need to watch grey's, clean, pack and  sleep.... You would think I had enough hospital drama for today--- now I just need Jeff to stop flipping to the Yankees game!!!

one more day!

Today was fine-- Grier was up really late last night because of the late nap in the stroller yesterday -- So, around 11 he was out and I knew this morning would be tough to get him up at 7--He surprised us and got up and ready to go-- 

He had his MIBG this morning at 8 and we were handed a sleeping Grier around 10-- He slept off the anesthesia a little--- Did not do anything exciting but we needed a day to chill--- I am exhausted and I know Jeff and Grier have to be too-

This afternoon he did the 4 hour urine collection--- and I met Jeanna on 3rd Street for some window shopping and dinner-- She was here on business so it was good to see a familiar face!

That is it-- we know nothing from the tests so far-- And as Grier has reminded me several times today--- ONE MORE DAY and then we are DONE!  

We are back in the room but there is NO chance Grier is going to sleep anytime soon--- he had a long nap this afternoon in the stroller as we walked back from Build A Bear on 46th & 5th!  He really needed to rest so I am glad he did--

Today went well--- we met with the team and got "our goodie bag"-- this bag has all the supplies we will need for the next several days, YUCKY sski drops ( iodine to protect his thyroid from the radioactive injection-- he takes these for 3 days), urine collection bucket, a throw up bucket-- ( you never know when you need it !), contrast & measuring cup, forms that have his height and weight on them to hand to each technician at each test- and last but not least the BIG container with some kind of preservative in it for the 4 hour urine collection-- It has warnings all over it about being dangerous if on your skin-- all of this is in a HUGE brown Shopper!  I think it should be printed with the words "I HATE CANCER" ---  but it is plain and lots of people carry them down 1st and York-

His check up went fine-- he does have another bad ear infection and they can not believe he is not complaining--- UGGH!  They are going to check him every day to make sure it is getting better-- The bad part is no vaccines this trip!  Really bad since he was going to get his 4 shots while he was asleep--

CT went fine-- he fell asleep while we were waiting and when I woke him up he seemed fine.  As soon as they went to touch his IV to inject contrast he started to cry-- I held it together and told the tech to keep going and Grier settled so we could finish--- there was not any anesthesia back up so we had to do this-- I think it was the IV causing the problem--- It is a good one according to the nurses and if good blood return means anything they are RIGHT!!!  LOTS of BLOOD--- even Grier commented on it-

We didn't have to wait too long for his MIBG injection and after he was done we headed to Build A Bear for his reward-- He made a Mets Bear and he is wearing a uniform WITH cleats! He had fun doing this for the first time and it was not crowded which made it more enjoyable-

We had a quick dinner at the pizza place-- and played in the playroom-- he is coloring now and may do that until he just can't keep his eyes open anymore! 

We head to the hospital at 7:30 for his MIBG and then we are done for the day--  so maybe we will get out of there by 10~!  

I will post some pictures soon--- they are of us waiting all day and "Home Run Henry"

Grier wants everyone to know he has 2 days left!!! 

Live from NYC !

I am locked out of caringbridge--- :(  So, I can not update it--- anyone know how to fix that?

Three months have flown by and we are back in NYC for Grier's check up--- We flew in this evening with a fairly uneventful flight--- we did have a "first" for us--- we got to witness an unruly passenger almost get escorted off the plane! She wouldn't power off her cell phone!!!!!! Seriously.... She was right behind us and Grier only stopped coloring twice to ask what was going on! Finally it was settled and we took off-- a bit late-- but it was better than going back to the gate!

Grier had a great flight-- coloring the whole time and challenging me to a game of skeet ball--I was a bit worried since we found out late last night that he had some ear pain--- what timing- But with Andrea's help we made it without any pain due to the pressure-- whew! Thanks Andrea!

Grier choose to go to Southern Hospitality so we walked to dinner without our stroller---NY is so much nicer when the weather is nice-- It is a little hot... I am still waiting for the Air to work in the room-- :(

Tomorrow we will head to the hospital and do a check up with the NB team. After that he will need to chug his contrast so he can have his CT scan done--- Hopefully all will run on time and we can make our 2 o'clock appt for his injection for the MIBG scan--- I have done this enough to know that will run late :) As soon as we can we are going to Build A Bear--- that is the reward for staying so still in CT! He is still trying to talk me into going to BAB first instead of the hospital!!

That is it for now--- I will update a lot this for those of you that are following this crazy adventure we are on---

ps-- Grier yelled "I call shotgun" when we were waiting for a taxi-- 

D-DAY!

Sorry for the lack of updates .... but no news is good news around here!  Since today is the anniversary of the diagnoses I thought I should say something!!! 

We have been busy since the last update with all normal things... even a few ( actually more than a few...) trips to our pediatrician.  All three have had the same "crud" that has been going around lately--   Grier was funny after the 2nd trip-- he asked me WHY.. are we going to THIS doctor now and not Dr. McMahon!-- I explained to him that Dr. M looks at unhealthy cells and Dr. S looks at his throat, eyes and ears and tries to figure out about his cough-- That was enough of an explanation for him!  I am just glad it was THAT doctor-- :)  

I am not going to write a long update about this anniversary--- because it is not something I really want to look back on--- I read last year's update and I am not going to down memory lane again-- Year 2 has been just as busy as Year 1 but in a different way-- Since July our trips to NYC became more spread out and allowed us to catch our breath!  Yes-- I think I survived on adrenaline for 18 months!  

During our "off" time from scans and treatment we concentrated efforts on finding a cure with the help of most of you-- donations were made to the band of parents, cookies for kids cancer, Children's Miracle Network and Curesearch.  Thanks to everyone that helped with each of those fundraisers.  Certainly the favorite at our house was the bake sale-- who knew one could raise $2000 selling cupcakes and cookies in your front yard.  And I have to mention Charlotte's first Milestone walk -- The Go Grier Go team was amazing and raised over $10,000-- and 95 cents of every dollar of that goes to Pediatric Cancer research.  The whole event totaled over $100,000-- Really good for a first walk in Charlotte.  Hopefully we can double that this year!

We also had some great trips... 4 different beaches and Disney for Thanksgiving-- 

But the most important thing we have done is practice being a "normal" family of 5-- Grier loves going to school and he has developed some great relationships away from home-- Hayes and Grace continue to do well in school--- yes.. I was waiting for the "fall-out" from our chaotic year but we have not seen much- ... we have some "tween" issues but isn't that "normal"? Other than going to NYC and "living" in the Ronald every three months-- we have been pretty normal!

I was going to put together a "video" of the past year BUT I can honestly say I need to do better with taking pictures--- I took all the pictures from each blog post and tried-- but it is not so great-- I need a tutorial!!

We are headed back to NYC on the 27th of April for a work-up-- To say I do not fell the stress already would be a lie-- but I am learning to deal with the fear.  I was talking to another cancer mom and we were trying to think of how you " celebrate" the anniversary of being told your child has cancer-- paper.. wood etc.  She asked the question on Facebook and got some interesting answers!  I hope that is something no one else will hear but the facts are someone is probably hearing right now-- more has to be done... I was one that thought it could not happen to my child and here I am fighting the fight--- And we are going to win this fight!-- Grier is very competitive so with his drive and personality we will keep searching for ways to keep him healthy and happy like he is he is right now-

The next big day to celebrate will be Grier's 5th birthday-- he is already starting to think of what kind of party he wants-- another milestone-- his first friend party!!  June can not get here fast enough!

So as year 2 comes to a close we will continue to press on looking for a cure and continue living---Thanks for coming along with us on this journey.  I know I have posted this poem before but I thought it was the perfect poem for this kind of day.

I HOPE...

I hope you never have to hear the words, 'Your child has cancer.'

I hope you never have to hear, 'The prognosis is not good.'

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

'It's going to be okay, Mommy.'

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'There is nothing more we can do.'

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck beside you and hear them say, 'Thank God that is over with,'...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

'The cancer has returned' or 'The tumor is growing.'

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)

Monday, March 16, 2009

Thursday, January 29, 2009

It is Thursday and my expectation of hearing something from MSKCC early in the week was not right--I was getting very anxious and know they are busy but I wanted to know so we could rest a bit!   After many emails to the doctor asking if he has heard anything about Grier's BM and urine tests.... I heard from him today and it said.. "Show no evidence of NB- wonderful!"   I love the fact he answers emails but they are short and to the point-  I think this makes the one year point of Grier being NED ( depends a bit on when you consider the first time he was NED!)-- I am not going to speculate on statistics but I am THANKFUL for the past year-- easy year... HELL..NO!  It is hard to do scans every three months-- and even harder to live 90 days at a time-- but I will take it-- and hopefully we will get better at living at 90 day intervals!  

So-- that is the good news I can share with you all today-- I have almost recovered from the week in NYC-- I know some of you think that is crazy but that week wipes me out-- the stress of Grier's scans, the week of BAD sleep at the RMDH, and the other news around the house and the hospital that always impacts the week-- when someone relapses you feel the fear they feel as well as when you hear the horror stories of insurance maxing out, marriages failing, and families divided because of new treatment plans far away from their home-- and the worst is not seeing a family you knew because their little one is no longer with them.  Reality is tough on 73rd street!

Next week I am going to be on the insurance appeal warpath-- love that time in my day--- but it has to be done!  The funny thing is that I am not appealing NY procedures-- but Charlotte procedures-- The pediatric surgeons in Charlotte make my life crazy because they are not in contract with BC/BS--- and I have to play the game called---"APPEAL"  I think it is crazy that they are the ONLY pediatric surgeons in our area and have privileges at Levine Children's Hospital but make you appeal to get your benefits paid!  I knew when we had the port taken out we probably should have flown to NY to do it-- but I decided to have it done at CMC and play the game-- I am not complaining-- ( well.. I am a bit..) but I am glad I can focus on it right now--  I certainly try not to complain and often joke with people that this blog is the nice version of our experiences-- It is the version that I feel like telling right now-- !

Thanks for all the thoughts and prayers last week-- Continue to pray for cleans scans as we will do this routine until the year 2012~!  

Saturday, January 24, 2009

We made it HOME!

We are home-- not much to report other than we are exhausted from waking up so early to head to the airport and the events of the past week-- I am sure  our neighbors  at the RMDH did not love the vacuum cleaner running in our room this morning before 6:45-- oops!! 

Our flight was fine-- Grier was asleep before take-off and he woke up as we were getting ready to land-- He loved reading the safety card-- It was funny to look over and hear him reading all the do's and don't's!  

We got to see the last 5 minutes of Hayes' basketball game-- and had lunch all together-- I ran a few errands and my car died in the deck of Trader Joe's and Best Buy--- ahhh--- welcome home!

Looking forward to enjoying the next 90 days--  I just need a phone call early this week to confirm what I believe I know!

Friday, January 23, 2009

Let me start by saying-- WE ARE DONE WITH ALL 5 TESTS! Yes... we are excited-- it is hard to describe but these are not easy tests-- I know Grier makes them look easy but they are tough to watch him go through and then to add the worry about what these tests may or may not find is EXTREMELY stressful- Ok-- with that said... so far 3 of his test results look good-- we only have an official reading of 2 -- the MRI and the CT-- and they are negative!! Negative in the cancer world is good-- :) The preliminary of the MIBG looks good but the official reading is not done yet-- This is the test that stresses me the most-- I am not sure why because they all can find something-- but this is the radioactive dye that will attach to NB cells and the screen will light up if they are present- We still have no word on the urine test and the bone marrow aspirations-- This will be next week some time-

Grier did great today-- we did have an issue with his IV again-- I think they put in a very small line ( because he has tiny veins!) and it makes things run slower into the vein -- so when they ( or actually Grier ) was pushing his white medicine into his IV -- it was stinging and he was uncomfortable-- also it took a long time to get him to roll his eyes back and become limp--- We have not had this problem before because we have always had a port-- So.. the IV experience is new to us and we need to come up with a better way to deal with it next time.

He had his MIBG at 10-- They brought him up sleeping at 11:30-- and he went straight into the procedure room for bone marrows-- We finally saw him around 12:30-- he was very groggy and grumpy-- Understandably so-- He also received the first round of immunizations-- so he is SORE-- 4 bone marrow sites-- and 3 shots made him slow down today!

We left the hospital and came back to the RMDH -- he was stirring a bit and when asked if he wanted to go to Johnny Rockets for lunch .... he perked up a little and ended up napping the whole way there-- The weather was great-- it felt so warm- 40 degrees and we were able to walk after lunch -- we ended up going to FAO and Grier walked around a bit and got a new tiny cat-- On the way home we had to stop into Dylan's Candy bar-- and then we went back to the Ronald--

Now-- we are beginning to pack-- we will fly home tomorrow at 10-- and should be in Charlotte by noon---

Thanks again for checking in... and leaving notes-- between the blog and facebook I felt very connected! I will update when we get home-- or as soon as we hear more results-

Thursday, January 22, 2009

I wish I could start by saying this day was as "easy" as yesterday--- but it turned out to be harder than I ever thought!  

We were excited to have one thing today-- and that one thing could possibly take 5 minutes if all the stars are lined up right--- ! First we woke up and Grier's new question each morning is not "what are we going to do today? but "Are we going to get to eat breakfast today?"  Today I was happy to say "yes"-- "where do you want to go?"  I knew the answer before he even said --- Cafe Luka!!  He was thrilled to get bacon and pancakes--  He made a heart with his bacon ( see picture)

We left there and Grier was singing What's the Wedder (weather) like today?  And it was cold-- We talked about different places to visit-- but Grier wanted to come back and practice his new talent-- "diving catches!"-- And I learned long ago not to force him to go somewhere for the sake of going!  Before we knew it -- it was time to head to the hospital for the "easy' injection--  We ended up having to go up to the 9th floor to get another hospital bracelet-- After that trip to 9 we headed to Nuclear Medicine on 2nd-- and began our wait--- After an 1 and a 1/2 they called us-- and the fun started-- The nurse flushed his IV and it was not working-- so she said to go back up to 9 to get them to look at it-- well.... I knew right then he was going to have to get another IV-- and that is what happened!  Not fun... he got this one on top of his wrist so he is not thrilled!  Th other was under his shirt and he forgot about it when it was covered with his shirt.  We went back down to the 2nd floor and I did not even go into the waiting room-- I was going to be a huge pain--because we were not going to wait again--  we were taken back quickly and off we went over 2 hours later!

Tomorrow we have to be at the hospital at 9:40 for a 10:40 scan-- he will be asleep for it and right after it he will have bone marrows done as well as round one of immunizations!  TOUGH day--- but I can not wait to tell him we are going home the next day-- I know he will be excited-

Here are some more pictures-- we wrapped both hands and told him he was a boxer--- and one of the pictures is Grier talking to Hayes and Grace at home--

Thanks for all the messages-- I read them to him at dinner and he replied back-- just like you guys were sitting at the table!  I probably should have written it down and typed it out--- Next time!   I am looking forward to saying we are HOME--- this has been a long week-

Wednesday, January 21, 2009

I stayed still!

Grier did great today-- We started out waking up late ( at least for us!!) and then he had to drink his contrast-- He wanted it mixed in blue Gatorade-- And we were prepared-- Jeff put his Gatorade on the windowsill and it was nice and cold by morning!! That sounds crazy doesn't it--  He drank it in record time and said "I do not like THIS blue Gatorade!!"-- not a surprise since he does not know any medicine was mixed into it!  

We walked to the hospital quickly because it was sooooo cold!  After a quick trip up to the 9th floor we headed back down to Radiology-- and believe it or not they took him early-  Since we were going to try to do the CT without anesthesia we were called back early because we were there waiting-  Grier hopped up on the table of the Doughnut machine and put his head in the spot and they put a seat belt  on him and he was ready-- I suited up and I held his hand while the machine took him for a slow ride!! And before we knew it he was done!  It was so fast and nice to get to leave early-  It was also nice not to have recover him from the "white medicine"-  He was very excited that he stayed so still and said it was like the "dumbo" ride at Disney--- Maybe because it is slow and easy!

We walked back and stopped for lunch on the way- it is s cold that we have stayed close to "home"-- we did take Grier to get a haircut-- I know.... but it was something to do and he needed one!

We spent most of the afternoon going to the playroom and shooting baskets in our room-- He did some science experiments today-- a volcano and a catapult thing-- he was more thrilled with the ping-pong table though-

These days have been long-- but we are managing our cabin fever!

We have not heard any results yet-- and tomorrow we only have the radioactive dye injection for the MIBG that will be on Friday--- Grier is most excited about tomorrow because he gets to eat breakfast!! I am trying to figure out something for us to do-- 

That is it-- wow.. it is not even 8'oclock and we are ready for the day to end--- 

ps-- enjoy the pictures again-- ( if you are reading Caringbridge-- they are on gogriergo.com)

Tuesday, January 20, 2009

A very LONG day

Day 1 is complete!  We started out bright and early because they called and said we could have an earlier time for his MRI-- so we got there and waited-- and ended up getting called back after our scheduled time!  

Grier did great getting his IV-- he was very still and the nurse got it in the first time without using numbing creme-  I was telling Grier how great he did and he said " I stayed still except for my tears-- they were moving!!"  While we were in the procedure room we saw Dr. Kushner for a second and he said he looks good-- and doesn't look like he should be a patient here-- I then told him about our "scare" and he perked up a bit and said that was the right thing to do with the testing in Charlotte--  because you never know

After the IV was in Grier perked up a bit and was not so nervous-- he was very shy at first when some of the nurses were talking to him and our social worker walked by and reminded us all that he has been away along time and is not used to MSKCC like he was when he was there a lot- Ursula called us back to be checked out for anesthesia and she got to see the real Grier--- basically he serenaded her with Twinkle Twinkle Christmas Star, Bears are Sleeping,  and I like to move it-- it was funny!!  We had to tell her all of his ailments and accidents that he has had while we were at home-- and after I watched her write all that-- I said-" maybe it was not as uneventful at home after all!!"

We waited for awhile for the MRI. We passed the time by watching CNN and some kids from the pediatric floor put on a parade around the hospital with their American flags-- We finally finished up around 12:30-- and it felt like 6pm!  

We got back to the Ronald and went to Lenny's ( I know some are not surprised!)-- We tried to walk around awhile but the 17 degrees was making it difficult-- so we came back and played in our room and in the playroom-- Grier made his own soda-- at the activity for the day and drank it all!  He must have had extra carbonation because he was burping all afternoon!  

We start our day of waiting tomorrow at 10:30--- we are not scheduled until 12:30-- so it will be another long day-  He can not eat until after the 12:30 procedure and the only thing he can drink is the contrast--         

Thanks for checking in--- our internet is barely working so it is hard to update-- for some reason it has worked after 8pm both nights-

Monday, January 19, 2009

Hoping for a good week!

We had a great flight to NY with only a minor delay do to too much traffic going into LaGuardia!  Grier is an easy traveler-- 

We arrived in LGA and got into a cab and headed to the Ronald!  It is snowing here and Grier loves it-- he kept trying to eat it!  We ventured out for a quick dinner-- he wanted a piece of pizza from the spot

 around the corner-  We have rearranged the room here-- pushed the two twins together and Grier has claimed his middle spot-- I won't even go into the beds-- they are bad! We are trying to get him to settle down and not worry about tomorrow-- he asked at dinner about getting the white medicine without a "button"-- and I had to remind him of the  IV they did a few weeks ago and he was very upset-- so hopefully we will survive that trauma tomorrow!  We have to be at the hospital at 8:30-- and from the looks of it outside we may be skating the 5 blocks!!! It is going to be treacherous!  He has to be cleared for anesthesia -- and then we will have the first of the many tests-- the MRI of the brain-  

That is about it for tonight- thanks for staying on this journey with us-- Enjoy the pictures I put on gogriergo.com-- they tell the story of our day better than this post!

Tuesday, January 13, 2009

WOW!! This is my 300th post--- I know it is LONG overdue but I have not been in the "mood" to write an update-- :)

Grier kept us on our toes during the Christmas Break--- you all know about the CT scan and the waiting on those results -- then he developed croup right before New Year's Eve-- and that sent us to our pediatrician's office-- ( which was a good way to ease back in since I had not been there since the day we were admitted in March 2007-- really hard to believe-)  On one hand it was nice to be in a normal doctor's office with all the people waiting in the waiting room coughing-- but on the other hand I was used to a more sterile environment of the Hematology/Oncology office-- I kept looking for a mask for Grier to wear--:)  After a round of steroids-- we had to head back in because he was not getting any better--he had a chest xray and got a different medicine and finally by the weekend he started feeling better and the coughing slowed down-- Whew-!  We were dragging around here that week- But in his typical fashion he was great at the doctor's both times and just rolled with the waiting like a champ!

He started school again and was thrilled-- he could not wait to get back-- He is still singing Christmas songs and occasionally I hear him try to make Twinkle Twinkle Christmas Star into an Easter song??  I know some of you are laughing since you know he sang that song as our blessing for a few meals over the Holiday Break!! 

He had a scooter accident last weekend and again had the "Rocky Balboa" look to his face--- He was doing a "trick" on his 3-wheeled scooter-- hmmm.... I think the next trick is to learn how to catch yourself with your hands when we fall!!  All typical boy things--!!

We leave for NYC on Monday the 19th-- we will be there all week doing a full work up--  Grier is excited to go-- he loves to play the arcade "boat game" at the Ronald-- I am not so excited-- but I will fake it for him-- can not believe he is looking forward to it!  He just goes knowing we are going for a check up with the NY doctors-  We are flying on USAir-- I decided a few months ago not to gamble and wait on Corporate Angels-- Maybe when the corporate world recovers-- I will feel better about that-- But for now I need to know how we are going to get there and when we are coming home-  The weather is going to increase the number bags that we usually take-- We will be packing for COLD weather-- :(  I need to go find our NY stuff that we had last year to keep warm... especially that stroller cover and wind guard!

I will update from NY-- some days there is nothing else to do as we wait for him to recover from anesthesia after each procedure-- we are going to try to do the CT without the "white medicine" and maybe the MIBG-- still not sure he can lay still for that long ( an hour)-- but we will see--

That is it for now-- I will not update until we get to NY on Monday- That will be here before we know it-

Tuesday, December 30, 2008

normal

A quick update to say that we have cancelled the brain MRI and bone marrow test-- the pee test came back within normal limits so we will wait 2 weeks to continue with the rest in NYC- He has not had any pain since the CT scan was done so we feel good about waiting for our NY trip to do the full work-up.

Other than that everything has been great-- Grier feels good except he woke up with a cough/bark- another normal thing for us to deal with!!

The other exciting news is that Grace got braces yesterday and she is so excited-- her teeth are sore but she is already taking really good care of them-

Looking forward to see what 2009 has in store for us--- Goodbye 2008~!

Wednesday, December 24, 2008

Merry Christmas Ya'll~

Merry Christmas from our home to yours---
Grier seems to be feeling much better-- He is not complaining about anything and still sounds hoarse! He did not have any additional tests this week-- mainly due to a scheduling nightmare-- and I was not willing to offer to admit him or withhold food from him until 5pm -- I am trying to give him a Christmas that a 4 year old should have-! It looks like it will be next Wednesday for a few tests-- and hopefully by that time the "pee test" he took last Friday will be back from China-- ( not really-- but it does take a LONG time to come back!)-- and we will know something-- the markers in the urine are reliable so it could change all plans depending on what it says!

I am having a hard time believing today is the 24th--- Christmas Eve-- Where did December go? We have been so busy doing all of our annual Christmas traditions as well as adding new ones this year-- We rode around looking at lights-- and Grier told me that the house Mrs. Bailey told us about is better than the lights at Hollywood Studios in Disney... ( Mammoth Drive if you want to check it out for yourself!!) We also added an Elf on the Shelf named Freddie to our tradition and this has been fun-- Grier tried to beat the other 2 up each morning so he is the first one to find Freddie-- and just yesterday he came running in to tell Freddie to tell Santa that he had one more thing he wanted-- I was trying to explain to him that Freddie can not tell Santa things this late!! I think he is going to be very upset to see him go back to the North Pole tonight. One of my favorite things is the cards-- we love to look at them- The Nativity at Park Road Baptist is a favorite for all--- and Grier finally gets the story of Christmas this year-- I was laughing so hard last night as he asked a million questions as we watched the Wise Men, Angels, and Mary and Joseph-- He knew it all and we asked him how he knows all this and he said "Miss Beff" tells me at school!!!"--- And we went to the Children's service at Covenant today--- and again he knew the whole story and really gets what Christmas is about--He loved seeing all the animals and I loved seeing the donkey walking down the aisle of the church!!


We hope all of our new friends, old friends, family and special friends we have met along the way this past year and a half--have a wonderful Christmas full of HOPE, PEACE and JOY.
Merry Christmas-
A, J, H, G, & G

Saturday, December 20, 2008

5 more days and Christmas will be here and we are all excited at our house. Grier is into all the traditional Christmas activities and he can not be happier. This is the first Christmas I think he remembers since the last 2 were spent while he was sick---

With that said-- I will tell you what a crazy few days we have had--- A couple of days ago, Grier woke up and told me his back hurt. I took a deep breath... tried not to panic and chalk it up to the day before he was doing karate spinning kicks for most of the afternoon. He then told Jeff the same thing... and later he told my mom.. so the sick feeling in my stomach wasn't going away! The next day he complained of a headache--- and you can see how I was started to feel about these symptoms... but he went to basketball and played like a crazy person for an hour and then ate a great dinner--- On Friday... first thing he says to me is... " My neck hurts"--- and I freaked. As I was getting ready he is complaining his head hurts. I quickly went into that prepare to leave mode as I got everyone ready for school. I debated who to call.. NYC or CLT? And after dropping off Hayes and Grace at school -- I called Dr. M in CLT--- and you can imagine how that conversation went.... His great nurse told me to come in right away. Grier and I headed to the clinic-- Grier asked where we were going and I said -- to the clinic so Dr. M can look at your neck and he said OK! OK--- not the response I wanted from him-- maybe... NO, MOM I feel better now--- but not OK! So, I knew he felt bad-
We got to the clinic and did the drill--- weight, height, and are you in pain anywhere etc.--- and Mom-- Why are you here today?-- well-- that was round #2 of losing it! They put in an IV-- actually could not get it in at first-- but the 3rd time was a charm! We talked about how these are the symptoms that started this whole thing in 2007... and the fact that Grier does not complain ( he ran into the ladder that goes to the attic two weeks ago and it barely phased him--he looked like he had a broken nose but he said it didn't hurt!) He has a VERY high pain tolerance-- We did a urine test-- but that takes several days to get back so the only option was a CT scan- Grier has never done a scan w/o anesthesia so it was going to be tough to get one scheduled w/ anesthesia w/o being admitted into the hospital ( I did not want to have him admitted)--- So, we decided we would try to do it w/o anesthesia if they could work us in that day--- They ended up having a 3:30 opening. Grier had not eaten all day and actually was sleeping a lot in clinic-- we went to the scan and he had to drink this contrast-- he did it with lots of coaxing! They finally called him back to the "doughnut machine" around 4:15. He laid on the table had his head strapped down and was perfectly still while they scanned his head, neck, abdomen and pelvis--- We talked to him and said this was like a ride at Disney--- yes... a long shot but trying to make it fun!
We headed back up to the clinic and waited for Dr. M to come tell us something--- he came in and said he needed to go talk to the Radiologist because Grier has had so much surgery he wanted to make sure he was seeing everything. It seemed like a long time but he can back and said he did not see any new tumor or mass-- But he agreed he did not look well when we were at clinic and gave us options --- one being wait and see if the pain persists over the weekend then we can do more tests. And the other would be to do an MRI and bone marrow on MON, TUES, or WED to rule out marrow involvement-- We had a huge sense of relief that the CT did not find anything-- but we know NB is difficult to find so now we are deciding what to do-- Our full work- up will be on Jan. 19Th in NYC- We went home around 5:45-- and to say it was a long day is a huge understatement! Grier was talking a little more-- and if you know him you know he normally talks ALL the time! So.. he was still off a little-
Last night was not so great-- he did not sleep well and had bad dreams-- I would say more like night terrors-- but he did not complain about anything this morning hurting him. As the day has gone on -- he has perked up and actually has a little bit of a raspy voice! I am actually excited because it could mean he has something viral like we talked about yesterday-- But yesterday he did not have a cough, runny nose or sore throat. He is talking a lot more and even singing his songs again! I think he is feeling better... He does have some battle wounds from yesterdays tests-- both hands are bruised from trying to get an IV in and his arm was sore where it was in-- He told us how brave he was for being so still yesterday-- and I totally agree! I was not as brave as he was-- I just kept thinking of all the scenarios -- this time knowing too much- and trying to find my "game face" I was so good at many months ago!!
I am praying this whole thing was viral -- maybe we will all wake up with it in the next few days and I will be thrilled! I am sure this will be one of many times I freak out-- but it is really hard to tell what is NB symptoms and what is a normal kid illness---
This is certainly not the update I wanted to do at Christmas-- but it made me stop and think about how lucky we are today and not take it for granted-- because it all can change in a second!

Monday, December 1, 2008

THANKFUL!

Where should I begin this post? I hope everyone had a very nice Thanksgiving--- we did! And we have so much to be thankful for. I thought about listing them all but whenever I try to do that I always forget someone-- so I will not make a list! If you read this blog and have said prayers for our family during this ordeal called "CANCER" -- we are THANKFUL! You can not help but think that they are working when you see Grier-- I know.... I know... NED is not a cure but I am hoping that we continue on this path that we are on until the year 2012!... I am enjoying watching him grow into a preschooler with some personality! If you have done something to help me raise awareness and money to find a cure-- we are THANKFUL! I can not believe how much we have done in the last 6 months-- a great bake sale and a HUGE walk that raised a lot of money to help find a cure plus all the other things you all have done on your own! We are THANKFUL for all of Grier's past and present teachers! He made something at school and he is THANKFUL for Tucker ( our dog!) and Frisbees, soccer, and every other sports object in the catalog he cut pictures from! I am THANKFUL for FIRST PRES WDS-- he has gained more confidence -- made some great relationships with friends and teachers--- and sings songs he has learned all day LONG! So much for trying NOT to make a list-- but WE are THANKFUL for everything and that includes all of YOU!

Some of you know how we spent Thanksgiving this year-- It was not the norm but ended up to be very special and fun! My mother and her sister, Linda took us to Disney World for 4 days! No-- this was not his make- a - wish trip-- it was just a quick trip to Africa ( we stayed at Animal Kingdom Lodge!)-- 3 days and 4 parks ( Animal Kingdom, Magic Kingdom, Epcot and Hollywood Studios!) -- Hayes and Grace rode every ride they could -- sometimes even twice! Grier rode his first roller coaster and his favorite ride "DUMBO!"... saw some great shows and ate popcorn at all four parks! We had a lot of fun -- THANKS MOM and AUNT LINDA! We were able to do all these rides with little to NO wait because of a letter from our great social worker and Dr. Kushner in NYC-- as well as Disney's guest relations and the inside tip from Julie Sparks!! We are THANKFUL for that too!

We are THANKFUL to be home for the HOLIDAYS-- last year was a blur since we were gone more than we were here! We are THANKFUL that we had a home away from home last year at the RONALD in NY -- We are THANKFUL for Grier's doctors in NYC and CLT-- as well as both hospitals! I think we can safely say we are THANKFUL for everything!

ps-- If you are looking for a gift to send to family and friends... like some delicious cookies... I would be THANKFUL if you would go to www.cookiesforkidscancer.org and click on buy cookies! You will feel good because you have sent a gift that is delicious as well as helped fund research for a cure for pediatric cancer! Also-- if you are on the website and you click on children that inspire us--- you will see Grier..and a few other kids -- This is the fundraiser that Liam's mom started last year and they ended up donating $400,000 to MSKCC--

Sunday, November 30, 2008

We are back from Disney--- ! I will update as soon as we recover!
:)

Monday, November 24, 2008

Happy Thanksgiving!

Tuesday, November 18, 2008

Below is a link to the local news coverage from the Curesearch Walk. So many of our friends are represented here.... thank you for all your support!!!!

http://www.wbtv.com/Global/story.asp?S=9368029&nav=menu1434_3

Sunday, November 16, 2008

Medals & Champions!

We have been non-stop for about 48 hours!!!
Grier did great during his surgery on Friday morning--- We arrived at CMC- one day surgery at 7:30-- I thought I was doing really well getting him out of the house and arriving on-time-- As soon as I walked in-- I saw Anne waiting for us!! I was glad to have her there talking to me and helping me entertain Grier--- actually I think he was doing the entertaining!! The morning seemed to go quickly but we did not get home until 1:30! We then moved on to getting the final CureSearch walk tasks done-- picking up doughnuts.. going by Smoothie King... and totaling team #'s!! Grier was feeling really well by the afternoon and he decided he needed to go to Target-- and he did just that and got his new matchbox car!

Saturday morning came too soon-- Grace had an early (8am) soccer game so we all were up by 6:45-- yes..this was a weekend! Jeff and Grace left for her game and the rest of the crew got ready to head over to the park-- And from that point on the day was a blur!!!
Freedom Park was full of people trying to raise awareness for Pediatric Cancer--- the weather held out for us during the morning --- Medals were given to the kids that were childhood cancer heroes-- Grier has not taken his medal off since Saturday morning--! The walk started and the sun came out and the weather was gorgeous--! Teams were there supporting each other and money was raised to find a cure--- and I said to someone I would love to see our grand total come to $ 100,000- Dream Big by Roger Day was played over and over again and then the total was announced-- The first MILESTONES CureSearch walk in Charlotte, NC-- raised over $101,000!!! Thanks to everyone that came out to walk, donated money, sponsored a marker, or helped me find contacts for DOUGHNUTS!! (I had to put that in , KRISTIE!!!) and came to walk from out of town ( Aunt Katherine, Aunt Linda, Anne and the Barnette crew.. Kristie, Ken and Grant!)-- The day was better than I ever thought it could be and Grier was so excited- I put a picture of Grier and his friend, Isabella on the blog-- They were so cute holding holds as the walked behind the banner to start the walk-- She is another NB warrior that goes to MSKCC and lives in Charlotte, NC!

Here is a link to see the pictures of the walk taken by the photographer-- copy and paste this!

www.treasuredeventsofcharlotte.com/kalendar/index.php?cat=2008/Nov/CURE%20SEARCH%20Inaugural%20Charlotte%20Walk%2011-15-08%20at%20Freedom%20Park&start=18

Today started just as early as Saturday-- Grace and her team were in a tournament and they had 2 games on Saturday --I did not get to see either :( They also had two games today and I was excited to watch the team play really hard together! ALL 3 U9 Charlotte United Girls teams did a fundraiser for Go Grier Go--- They wore special jerseys this weekend that were tie-dyed and had Go Grier Go on the back--- I put a picture of our team on the blog--- They looked great! Thanks to all 3 teams for supporting Grier and being a part of his team! The girls played really well and ended up winning the game. Grace and her team got a medal after they won the championship game! Grier had to tell Grace that she has a medal like his now!!!

As this weekend winds down I am again humbled by the good things people do for our family-- We do not take for granted anything and I know sometimes we do not thank everyone enough-- So-- THANK YOU for being a part of our growing team!!!

ps--I know some of you are wondering what we are going to do now--- well-- WE ARE GOING TO DISNEY WORLD!!! no-- I am not kidding :)

Thursday, November 13, 2008

2 days to go--!

I have tried to flip this picture around but I can not for some reason so... just turn your head!!

The final countdown for the Milestones walk is on!!! 2 more days to go and I am pleased to say that the Go Grier Go team has grown to 135 people & we are still counting! We also have raised a huge amount of money for Pediatric Cancer Research!! As a group our total is almost $14,000!! I am so excited to say that right now... our Charlotte Milestones walk has raised $71,000!!! The best part is we will not know the final amount until Saturday because people will be bringing money with them !!! That is an amazing accomplishment for our community!! WAY TO GO -- GO GRIER GO & all the other 40 teams that are signed up for Saturday!
And Thanks to our newest sponsor-- Cox-Schepp for sponsoring the walk!!!!

I took this picture of Grier today while I was trying to write names of the children that are being honored at the walk-- He was making me laugh because he thought we should play twister on the banner!! And he was noticing first names that he could read -- kids that had the same names in his class!

Tomorrow will be quite a long day but I am going to be patient! I already did the pre-screening in the car while waiting for Grier at carpool so we are all set to get this port out tomorrow at 9:30! Grier has asked a ton of questions-- so many more than he would have asked a year ago-- and my simple answers are not as good as they once used to be!! He knows he is getting his port out and I tried to tell him-- Hey Grier, you get the white medicine-- and it did not seem to impress him as it has in the past-- He will not be happy that he can not "push it himself" and he is going to be really mad when he finds out that he has to wear a Gown!! So... since my simple answers do not work I have decided that bribing might and so far I think it will work!! We will be going to Target to the toy aisle!!! It will be worth the matchbox car he picks out!

IF you are planning to walk with us on Saturday-- please try to be there by 9am-- I would suggest parking on the Princeton Ave. side of the park or at Whittington Baseball field-- all activities will be at the Amphitheater -- Remember to wear a GGG shirt if you would like too-- If you have any $$ to turn in I will have an envelope for each of you!! And if you raised at least $46, $100, or $250 you will get a prize-- I will have a totals as of Friday at 5pm--- You will need to see me for a prize "ticket"
This day is RAIN or SHINE!
I will try to find a spot where we can all meet as a team-- just look for the GGG crowd!

See you Saturday if you plan to come or THANK YOU for support this cause!

Wednesday, November 5, 2008

I thought I would do a quick update on Grier-- he has been doing GREAT!!! He loved Halloween and has now moved on from his imaginary baseball/soccer team to his basketball team!!! Yes-- we did have to get him Chuck Taylor's for his "uniform"!

On the medical front it has been quiet for us-- tomorrow we will go see Dr. McMahon for his monthly check-up-- And next Friday (14th)-- his mediport will be taken out! Exciting in so many ways but scary in some ways too--- We have not had surgery in Charlotte in so long-- I am out of practice-- I am used to MSKCC so it will be an adjustment for us! I joked with a friend and said that I would bring my stroller and as soon as he blinked I was leaving the recovery room and walking home-- Hey-- that is what we did in NYC! I know that will not be the case and have been told to spend at least an hour in recovery-- maybe longer- ( Hey.. Susan can you go to outpatient and be our nurse that day??? :) PLEASE!!! I wish some of our NYC friends were as lucky as we have been for the last few months-- I am sick of reading about kids losing their battle with NB and those that are relapsing -- It has been non-stop lately -- It is really NOT fair--

We were given a gift that is priceless-- Angela Shea came to our house and went to the Park with us to do some family photographs-- First... let me say she was AWESOME to work with and if you need a children's photographer-- I would give her 10 stars!!! Here is the blog she does and you can see some of our pictures-- http://www.shea.typepad.com

And everyone who reads this blog ( which is NOT many any more) knows I only have a few more days to write about the CURESEARCH milestones walk on Saturday, Nov.15th-- Our GGG team is not at 100 yet--- and I am begging you to pre-register to make my life easier as a team captain on the morning of the walk-YOU MUST register everyone that will be walking-(it is $10 per walker) - I am going to be wearing a million hats that morning and I would love to have everyone that is going to walk with us register on-line-- If you can not walk in person-- join the team as a virtual walker-- send out a few emails-- set a goal of $10 and see the difference you make when everyone contributes a little bit! Also-- as the disorganized team captain that I am --- I did not print any special shirts for our team to wear-- IF you have a Go, Grier, Go shirt-- wear it! IF NOT-- Kerri may have a few so if you email me I can forward that to her-- And IF YOU DO NOT want to wear a GGG shirt-- that is OK too!
The walk is going to be fun-- only a couple of laps around Freedom Park lake-- music... Sir Purr, Lug- Nut, Molly Grantham, Starbucks, Smoothie King, Krispy Kreme.. Kids.. Families.. doctors.. nurses... friends... neighbors.. all coming together to show their support for finding a cure-

Thanks to the latest sponsor of the walk--- Commonwealth Animal Hospital!!! Thanks Jimmy !

I am sure I have forgotten something -- oh well-- maybe I will update more often!!

Friday, October 31, 2008

Article from Crystal Coast Parent Magazine

This is a great article that was just published in the Crystal Coast Parent magazine about the bake sale my college roommate organized in Morehead City, NC.... Kristie did great writing this article and hitting the points that are important-- Thanks again, Kristie! The pictures in the article are from our sale in Charlotte... we tried to get the Charlotte Observer to cover it BUT they gave us the run around as they have done with every request regarding the childhood cancer awareness month, Cookies for Kids Cancer and the CURESEARCH milestones walk ( They do not think pediatric cancer is important enough to cover!)-- OH Well!!-- at least Morehead City gave it some press! If you click on the picture of the article it will get bigger so you can read the entire piece-

Wednesday, October 22, 2008

A new THANK YOU and one LONG overdue!

First, Grier is doing great in school-- he loves to tell us about his friends and teachers. He went on his first field trip to Discovery Place-- All normal things for him and we are so glad-- He is looking forward to Trick or Treating-- He does not remember going before ( he was only 2) but we have talked about it enough that it will be fun to watch him enjoy Halloween-- It is hard to believe the 1 year anniversary of his HUGE surgery is in a few days!! On the medical front, we may be taking his mediport out !! We got the OK from Dr. Kushner in NY and he said the sooner the better! He said it could be done in NY or in Charlotte-- so we will start the process in Charlotte-- I know that if we were in NY it would be done quickly in a procedure room but I am not sure what it will entail here-- I just hope it does not require an admission to the hospital-- We are taking it out because we are not using it often enough to warrant the risks of having it in (ie. infections)-- the only downfall will be having an IV for all blood draws-- but hopefully he will handle that as well as being accessed-

Since all three are in school -- I have stayed busy trying to help organize the CureSearch Walk-- I have decided that when I do get a "real/ paying job"-- it will not be in fundraising!! As much as I love to hear the words.. "yes, I would love to help"--- I can not stand the No's! And lately that is all I have been told! I know the economy is bad-- trust me.. I know --BUT I also know cancer does not care! And my scale of BAD is so skewed by the words "your child has cancer" it is a little different - So, I go full speed for awhile-- then I take a break and get energized and go full speed again because of something good I hear from some of you---!

Those good things have been happening for quite awhile-- some are things I did not ask anyone to help with -- they just decided to make a difference on their own by using Grier's story. John Cantrell recently completed an Iron Man all the while raising a lot of money for pediatric cancer research! He has worked on this for a long time and I could not be more thankful!!
Everyone knows about the Cookies for Kids Cancer bake sale we had-- but what you do not know is that I asked another friend if she would have one too-- She not only had a successful bake sale but her church in Morehead City, NC decided they would partner with the idea and use it as their mission project and kick it off on the Sunday that the children led the worship-- So many great things came out of that day in Morehead City at First Presbyterian Church. The whole church family learned about the need for more funding for children fighting cancer as well as coming together to bake cookies in their Fellowship Hall to sell at the bake sale! Both worship services were about children including songs and sermons-- and a guest speaker, 4 year old, Grant who told why they were baking cookies and told the congregation about Grier! I heard they want to make it an annual event now!

This is from Kristie on her experience with the bake sale---

The children had a fantastic day on Saturday baking cookies and making their "cookie pots"! The Children's Sabbath was just wonderful with all the gold ribbons throughout the church and the message Suzy gave was remarkable! I'm forwarding you a link to the church website so you can hear it with your own ears. The way Suzy gave the message of seeing God through the eyes of children, children's cancer awareness and our responsibilities to all children was beautiful! You will be amazed by the personal connection Suzy has with St. Jude! I hope you will each take a few minutes to listen to it. I promise it's worth it! The website is www.firstpresmhc.org. If you click on "Recent Sermons" the audio is available today.

I found out yesterday that the article I submitted to the "Crystal Coast Parent" Magazine will be off the press next week. The article is about Cookies for Kids' Cancer and encouraging people to host a holiday bake sale. I was so pleased to find out it made the cover of the magazine! The magazine will go out to over 16,000 readers in eastern North Carolina. I hope the article will do the organization justice! At least there will be that many more North Carolinians made aware of the shortfall of funding for pediatric cancer and they CAN make a difference!

And that leads me back to talking about the CureSearch Milestones walk--- The Go, Grier, Go team is 87 members strong at this point and we as a team have raised more than $10,000! I still would love to hit my goal of 100 team members.... some of the concerns I am hearing is that the fundraising goal is set at $200 per walker-- please do NOT worry about this-- Also, this walk is a few laps around Freedom Park's lake-- not a long distance so this should be a family event for all levels of athletic ability!!!

That is it for my overdue update-- My favorite part is that the medical issue is NOT the biggest deal right now -- I think that would be finding a cure !

Friday, October 10, 2008

We made it home -- I can not believe how much we did this morning in the wee hours before we left for the airport-- packing sheets, cleaning and getting ready is more than most can handle and we did it on almost NO sleep! Our car picked us up from the RMDH-- and took us to LGA-- we were so early the breakfast places were not open yet-- except for one and it had a line with 30 people-- we had plenty of time and waited a little-- nothing else to do at that hour- We boarded our full plane-- and made it safely home- Grier slept the whole time on the plane and woke up saying "that was quick-- we are already in Charlotte!"-- He was ready for the day--- I took him to school and he was so happy to be back in his routine- I can not believe how well he does transitioning between NYC and CLT-- I am also shocked that he keeps going and going even after 4 bone marrow aspirations done less than 24 hours ago- Amazing... most adults would be down for the count for days!

I went to meet with the CureSearch Milestones Walk ( www.milestoneswalk.org) Committee while Grier was at school-- I can not believe we are 5 weeks away from Charlotte's 1st Childhood Cancer Awareness Walk-- We still have a long way to go to make this a HUGE event-- we are looking for sponsors-- your business can sponsor a marker for $500-- these markers will be placed around the lake at Freedom Park-- ( A huge thanks to A&K painting, Schattenfield Law Firm and Lowe's Motor Speedway-- they answered my plea for sponsors awhile ago-- ) We still need more! We are also working on other exciting things for the walk so you will not want to miss this event-- There is a team Go, Grier, Go!-- Right now we have 78 people on it -- I am still waiting to reach that 100 mark!! It is a $10 registration fee-- please register ASAP if you plan to walk-- it will help with the planning of the event-

During the meeting, my cell phone rang and caller ID said MSKCC-- I was a little nervous to answer because I thought it was too soon to hear anything else-- I was told that Grier's test show no signs of NB-- so I was relieved and thrilled- This will give us another 90 days in between the next set of scans-- And that covers the HOLIDAYS!!!

Thanks for all the thoughts and prayers this week-- And to Susan Shimp, my mom, and Jeff's parents for helping with Hayes and Grace this week-- Give me a few days to recover and I will update again!

Thursday, October 9, 2008

We are done with all 5 scans--- I am not sure I have ever been so worked up about a work up !!  Sleeping has not been easy for a week or so!  We did hear results from 2 tests today... the MIBG was clear and the MRI ( of the brain and orbits) was clear-- That was nice to hear this morning as I put him on the table to have his bone marrow tests done-  We will hear next week sometime about the other 3-- I am relieved to say the least--  He did great all week with the waiting, anesthesia,exams etc.  And there is no doubt we are at a wonderful hospital great nurses and doctors-- 

We are headed home tomorrow and Grier is very excited-- Every morning he asks if "tomorrow is the day we were going back home"-- And I was happy to say "YES" this morning-  We are going to try to make a flight at a crazy early time--  Grier may even go to school if he is up to it-- Right now-- he is planning on it! And he is planning on bringing his tornado that he made at the science class here at the Ronald--

I will update when we get home- and as I know more results-

Wednesday, October 8, 2008

The MIBG scan went fine -- I guess! We do not know anything yet- Grier woke up well from anesthesia-- so that's what I mean - Childlife came down and tried to talk us into doing it w/o the white medicine-- I asked Grier if he could stay still and watch a movie while they took pictures and he immediately got "anxious"-- I looked at her and said-- no- we will do it with the white medicine- She wanted him to come back this afternoon and "try" the CT machine-- I said maybe next time because we promised him a trip to Toys R US-- he wanted to ride the Ferris Wheel-- and I did not think it was going to be as fun to "try out" the CT machine! Some probably disagree but we have not done anything fun this trip and I was going to get him on the Ferris Wheel if that is what he wanted to do-
Tomorrow we have to get him to drink 8oz of contrast-- we mix it in a clear liquid-- I thought I would be smart this trip --I packed his favorite...wild cherry water (capri sun)-- All but one was taken at the airport-- the TSA lady said he could have 1--- well, I needed 2 to get 8 oz.-- So, we will have to venture out later to find a clear liquid for the morning- We have to be there at 10:30 for his scan and then they will do bone marrows after that-
His ears are still very red-- he is on an antibiotic 3x a day-- believe it or not this is his first ear infection- We have a make shift fridge in the tub.... a basin filled with ice!!!!! Nice huh? I did not feel like going to the over stuffed community fridge for medicine-- (3x a day)
We walked to 42nd street and 7th Ave. today--- stopping at Toys R Us for a ride on the Ferris Wheel and a new SpongeBob leapster game-- we had a nice late lunch at Lindy's-- it was good but it definitely had NY prices-- a $16 grilled cheese!!
We found out there is not a corporate angel flight for us to return to Charlotte--so I booked a USAir flight for Friday--not much choice since most were sold out and some were $600 a person-- luckily I found something that was less! It makes me a little anxious to think that with the economy like it is-- our travels to NY may be like this for awhile- I may have to stop gambling with a corporate angel flight and just book a round trip as soon as we know when we have to return. I am sure it will work itself out-- and by the looks of 5th avenue today... you would never know about the economies troubles! Shoppers everywhere--with bags!

Tuesday, October 7, 2008

MRI done!

We are almost done with day 1 of scans-- I am really glad considering last night was one of the roughest we have had in a while-- Grier had a really hard time settling down - which was very surprising since he should have crashed from getting up early and having a really busy day-- Around midnight, he told me his ear hurt. I kept asking him about his ears because he would cover them up and talk loudly-- and this started as soon as we got off the plane -- I thought the air pressure was bothering him-- But he said he was fine-- and told me he was louder when he covered his ears-- Around 2, 3, 4, 5, 6 he was sleeping but not peacefully-- and I started thinking about the Urgent care-- not really where I wanted to go-- we ended up waking up around 7:30 and he said he was fine-- I knew that was going to be my first question at the check-up-
We got to the PDH around 8:30-- and he made his rounds to see some nurses-- he was very shy until they asked what he has been doing at home.... He would say.. I go to school (by myself!)-- and then he would tell them that Mrs. Johnson, Mrs.Thompson, and Mrs. Winn are my teachers-- One of our favorites said-- Grier are you in High School now??-- You have so many teachers! And Grier laughed and he said, No, PRESCHOOL!-- Then he shared with everyone that he does not wear diapers anymore-- just boxers!
After all the catching up, he had his check up and guess what??? Grier has ear infections in both ears! I was shocked-- one looks really bad and must hurt-- they were shocked too because he did not have any symptoms-- He was going to start getting immunizations again but because of the ear infections we are going to wait-- A fever is the last thing we want right now--since he has a mediport. He will still get his flu shot on Thursday while he is under anesthesia for his bone marrow tests-
Anyway-- He did great with his MRI-- there was a little confusion about having him try to do it w/o anesthesia-- I told them I did not want to try on this test because it is so loud and long (an hour)-- maybe a CT-- so they called the Dr. in to give him the white medicine-
He woke up and told Emily ( nurse) that he wanted a bagel and OJ-- well-- it was 12:30 and we ended up at Lenny's for a turkey sandwich-- He can not have OJ because of the urine test that he has to do tonight!! He insisted on getting out of the stroller at Lenny's and he was very wobbly -- I caught him a few times-- and finally convinced him to sit until he was not quite so dizzy!
We are back at the RMDH house now and Grier is playing an arcade game-- we have to go back at 2:30 for the nuclear injection-
Tomorrow we have the MIBG scan-- He will not be able to eat or drink anything after midnight again-- I will break that to him later-- He told me last night that he was starving!! Can't wait to hear what he says about that again--

Monday, October 6, 2008

We are settled in NYC!

We are settled in for our first night at the RMDH-- it is hard to believe we have not been here for 3 months-- but it was not hard to get back into the groove-- There are a few familiar faces and lots of new faces-- It is again a FULL house--!
Grier decided we should go to Southern Hospitality for dinner-- Jeff enjoys the sweet Tea and Grier wanted creamed corn... aka "corn soup"-- well, in 3 months the menu has changed so he had to settle for corn on the cob! We walked back our normal path and stumbled upon a new bakery right next to the RMDH-- Grier got a pink cupcake with a baseball topper-- ! He is watching a movie and all snuggled up in a Hello Kitty blanket--- Grace let him borrow it for a few days- He is a little apprehensive about tomorrow-- I told him we had to get a picture taken at the hospital and he was fine with that until it dawned on him that his port has to be accessed to get the white medicine-- AHHH! The smarter he gets the harder this is going to be--! I hope he shows the real Grier tomrrow at clinic-- he has been so funny lately-- His new favorite show is Fennious and Ferb--and he is saying things just like the show!

Jeff is busy watching baseball on the 1 TV--- I may go crazy if we are going to only watch sports in this tiny room!! I guess I can work on figuring out facebook!! HA!HA!

I am looking forward to getting these tests over-- I am very anxious and I already miss our new normal--!

Saturday, October 4, 2008

Candy or Shoes Off?

http://wcbstv.com/video/?id=118285@wcbs.dayport.com--
Bake sale video -- very good!!

On Friday morning, Grier asked me what airport we going to when we go to NY? He said, Is it "the one with candy" or "the one where you take your shoes off"?-- I had no answer for him at the time because it typical fashion I was waiting to hear back from Corporate Angels. After I dropped him off at preschool, the phone started ringing-- And I was feeling a little better because we were getting some sort of a plan-- We were told of a flight on Sunday night- ( we have flown on this flight a lot--) Not my first choice since our scans do not start until Tuesday but I am trying to be more flexible-- so I said I would take it--- after multiple phone calls between us- working out the same details as every other trip we have flown with CA-- I was told OK-- you are on that flight! I had to start calling our NY social worker to change our reservation at the Ronald-- we were suppose to arrive Monday-- all of those details were taken care of and I was getting in my NY groove-- I started preparing my house.. bills paid, list made, checking my calendar so I could pass off my life to my mom -- I was getting tons of things done and the phone rang-- The woman said "BAD News"-- And I knew the flight had been cancelled! Yes- I should be used to this by now-- but I was assured this one was going- I immediately got on the phone to the social worker and told her we would not be coming in Sunday Night-- I am little worried about housing at the Ronald again-- She said it is tight once again and they are working on putting people at hotels but we SHOULD be OK-- will not know until we get there- I booked a flight (one-way) on US Airways-- and we will fly into NY on Monday- I wanted a late afternoon flight so Grier could at least go to school one day but with the room situation at the Ronald we need to get there so we have some daylight to find a place to go if there is no room!
I hate this part of going to NY-- I know it would be easier not to have to worry about the logistics of getting there- I can see why some choose to stay at the Ronald long-term-
We are shifting gears a little to get ready-- You have to do things differently when you go to the airport "where you take your shoes off"! Grier is looking forward to the trip-- not sure why but he is ready to go. He did ask if he has to get a finger prick? I said I did not think so and he wanted to know if that was forever? Certainly, can not promise forever but I will try to get them to take blood from his port! He hates the finger prick more than anything in the world! So-- for him this will be a good trip without that!

Monday, September 29, 2008

We are still doing fine! Grace's 9th Birthday is today and I am so glad we are not in the hospital celebrating like we did last year! Grier is planning for Halloween--- yes, he is going to be a shark! Or as he said.. A shark playing soccer! It is hard to believe it is almost Halloween again-- last year he was in PICU for Halloween so we are hoping for a much different celebration this year-

We have to be in NYC by Tuesday, October 7th for his 3 month scans-- I am not sure where our 90 days went but we have enjoyed each and every one of those days- "scanxiety"-- is my new word lately-- I am trying to not worry about the unknown and just live each day one day at a time!

We are still wrapping up from a very successful bake sale-- Thanks to all of you that came to support us-

The milestone walk is coming up soon-- NOV.15th! Please sign up to walk on our team-- I have not met my goal of 100 people yet! We also need folks to get involved in other ways-- I know so many things are going on with the world right now but there are also tons of kids fighting this awful fight right now too-- We need more teams-- think of a group you are in and do a team-- I know Union County schools are trying to get teams formed-- I also know a mayor is getting a team started---

I will update more when I know our schedule for going to NY-- I am waiting to see if we can get on a corporate angel flight--

Sunday, September 21, 2008

Two days... lots of cookies, brownies, cupcakes, cakes, muffins, rice krispy treats.... lots of stories of hope and courage... bottled water... tons of help from children... tons of help from friends, family and neighbors... And the end result is a $2000 donation to Cookies for Kids Cancer--- a donation to support pediatric cancer research for all kids fighting the battle and those that have not been diagnosed yet--- hoping that this money helps doctors find a cure someday-!

Day 1 was a success!

Day 1 of the BAKE SALE for COOKIES FOR KIDS CANCER was a success! We had a lot of traffic from people going to the festival as well as our friends that stopped by to get a yummy treat- We were very busy-- People loved the idea and some just donated because they were survivors or they wanted to support the children in this fight- I can not say enough about the amount of baked good that you all donated-- cookies... cupcakes.. brownies... banana bread...AND the HUGE amount of items donated by GREAT HARVEST BREAD CO. and POLKA DOT bake shop-- People recognized this items right away and commented about how nice they thought those businesses were to donate--- AND we could not agree more! As you can see from the pictures.... Everyone had fun helping... Grier helped by eating a cupcake made by 7 year old Hadley Sparks--- I put a picture up of the ones she decorated-- Kids loved them and they did not last long!

If you did not make it-- There is lots of items that will be for sale today-- LOTS of Great Harvest cookies and sweets-- and German Chocolate cupcakes from Polka Dots as well as the local baker assortment---!

See you around 3 on Jameston---

Friday, September 19, 2008

Quick update-- We are almost ready for the Cookies for Kids Cancer Bake Sale--

The hours are as follows--
Saturday 4-7 ( or until we run out!)
Sunday 3-6 ( or until we run out!)

Come by and stock up on some yummy treats made by some local bakers as well as Great Harvest Bread Co. and Polka Dot Bake Shop! All proceeds will support Pediatric Cancer Research--

Checks will be accepted and are payable to Cookies for Kids Cancer-- It is a 501 (c) 3 charity--

If you can not make it-- You can do your own bake sale-- check the website for information
www.cookiesforkidscancer.org

Thanks to everyone that dropped off water and goodies today--- !! Every little bit helps!

Wednesday, September 17, 2008

Bake Sale update and a little Beethoven!!

More free Beethoven ringtones

Bake Sale update---

Well-- I put the word out that we are having a bake sale for Cookies for Kids Cancer and I have had tons of offers to help bake--- not sure if it because everyone that knows me knows that I do not cook much or they just want to help!!! I am going to assume they just want to help!

As of now, we have some cookies being donated from Great Harvest Bread Co. ( I think they are the best cookies in Charlotte!!)... I also know we have some banana bread, brownies, lemon bars, and lots of cookies coming--

IF you want to help--- please just bring your items to my house on Friday or Saturday -- I will have a box on my front porch. Here are some ideas that would be great-- cupcakes.. rice krispy treats... a cake.. and bottled water-- I do not need to know what you are bringing so if you have time just drop it by my house- I have clear bags to put things in as well as a cute sticker with the logo on it-

IF you want to ask your favorite bakery to donate something then please do-- I know we are waiting on an answer from Polka Dots (cupcake shop) and The Bread Basket has already been asked --they said NO-- but you may know of another source -- Go for it! Remind them it is for a great cause-- HT might do it at each store level-

I think we will start around 4pm on Saturday--- I will decide later as soon as I figure out the other schedules in my house--

Grier is continuing to do very well-- He makes us laugh-- Today, he got in the car at carpool and said he went to music.. I asked what song he sang and he said "Beethoven"-- I asked him to sing it and he hummed Beethoven's 5th-- And now our whole house is humming it and we have listened to it over and over in my car- He loves to tell me what part is going to get louder-- ( That is why the music is on here)

He did bring me back to reality this afternoon when he asked if we could take our dog to New York with us? I said no-- and he said he was ready to go again-- I asked him why he wanted to go so badly and he told me he liked to push the "white medicine"--- NICE-- he is looking forward to anesthesia! October will be here before we know it -

I will update before Friday to let you know the details of the bake sale-- Remember if you want to help-- don't ask me -just do it!! I hope this ha