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)

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~!  

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!

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-

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-

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)

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-

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!

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-

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~!

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

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!

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--

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

Happy Thanksgiving!

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

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 :)

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!

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!!

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-

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 !