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 has helped with knowing what the needs are-

Monday, September 15, 2008

Be a good Cookie!

Grier had the best week of school last week-- He was very happy everytime he got into the car and told us lots of stories about his new friends at school-- We are so excited to see him get to be a kid again!

So many good things have been happening lately... the GGG team is growing everyday-- it is almost to 100!!! Everyone seems very excited about doing a personal page and getting pledges for CureSearch. I think we need about 30 more to go to reach 100--

I have also been working on something else!! I know some of you are thinking WHY!!! Well--- I can not sit here and do nothing, so I said "YES" to a birthday wish that Gretchen Holt ( Liam's mom) had about a month ago. She wished for 100 people to have a bake sale. She has just started a new organization to support pediatric cancer research. It is called cookies for kids cancers...www.cookiesforkidscancers.org Anyway, I asked 2 people to also have a bake sale and guess what??? They said "yes" too! My college roommate, Kristie has taken this simple idea and run with it-- her bake sale is going to in the middle of the NC Seafood Festival in Morehead City on Oct. 4th & 5th--AND the youth at her church have decided this is going to be a mission project for them and they will kick it off on their Youth Sunday! Amazing---! That leads me to our bake sale--- Grace has been waiting to do a lemonade stand and we decided to wait until Festival in the Park ( which is this weekend!)-- Why??? Well... on a good weekend they expect 100,000 people and most will park somewhere close to our house. We will be having a bake sale/lemonade stand in our yard this weekend--- The proceeds will go to Cookies for kids Cancer... and a lesson will be learned by all that help! Yes... I am teaching my kids to think bigger than themselves and to be a good cookie!!! Wish us luck as we try to squeeze in soccer and baseball games in between setting up shop in our yard!

Finally, the last story is about a family that decided they were going to raise awareness and recognize that September is Childhood Cancer Awareness month-- Kerri woke the boys up for church yesterday and told them to get ready to go-- She told them to wear their Go Grier Go T-shirt-- and her youngest said.. "MOM, Are we going to wear a T-shirt to church?" And she said "YES -- we all are!" She also had everyone wear a gold ribbon... And they were noticed and asked what the ribbons were for....

Thanks to all for that are working behind the scenes to bring awareness!!!!

Sunday, September 14, 2008

This was taken from Forbes Magazine---

Commentary
Childhood Cancer: Where's the Money?
Helen Jonsen 09.12.08, 12:01 AM ET

Helen Jonsen

First it began as little night pains in the leg, the kind most parents associate with growing pains. We told our little girl, "Don't worry, it will go away," and the next morning it seemed fine. She ran and played and enjoyed the days of summer, like her friends did.

But our nine-year-old's nights became more painful. A swelling in her knee got worse. A slip in the wet grass became an excruciating accident. There was little sign of anything more serious, but the pain grew in intensity and frequency. A couple of weeks went by, and a new school year was about to begin.

Finally, one tearful night, when Dad was massaging her leg to help it feel better, he felt a lump in addition to the swelling. He took her to the pediatrician, hoping against hope. The doctor later admitted his "blood ran cold" when he felt her leg.

Within hours, she was diagnosed with osteosarcoma, a bone cancer that often first appears near the knee or elbow joint, and can spread to the lungs and become fatal. A biopsy confirms the diagnosis. Osteosarcoma is found in only 400 children each year in America.

In this case, less than a month after the onset of symptoms, the tumor had grown to the size of a wine bottle, forcing an oncology surgeon to remove 80% of her femur and her knee joint and rebuild her leg internally with a space-age prosthetic.

She underwent debilitating chemotherapy for ten months, her entire fifth-grade school year, and continues physical therapy and rehabilitation so that her bionic leg, with half its healthy muscle intact, can learn to walk again. We now believe our daughter is one of the survivors.

No matter how good the treatment, not every child survives. One child in five whose parents hear the terrifying words "your child has cancer" will die. Sometimes the advancing cancer cannot be stopped with all the weapons in the oncologists' current arsenal. Sometimes it is the "cure" protocol that kills them. And every time, a parent wonders why, and cries.

Our daughter's battle with pediatric cancer is one of 12,500 in America each year, the most common kinds being leukemias and lymphomas. In July, Congress acknowledged that research into children's cancers is underfunded. Why would that be the case?

For one thing, children with life-threatening diseases exhaust their families emotionally and often financially; even after recovery, neither the children nor their parents find it easy to advocate for themselves. The children are too young, and for the whole family there is always that fear of recurrence. Parents want some respite before the horror might begin again. Unlike other health care lobbies, they do not have the energy to march in the streets and call for action.

According to Kate Shafer, Director of Advocacy for CureSearch National Childhood Cancer Foundation, most federal funding for childhood cancer research comes from the National Cancer Institute (NCI), with a small amount coming through appropriations. Schafer says, "It's a bit difficult to determine how much in any given year is spent on childhood cancer research. It is around $170 million per year."

Most of that goes toward laboratory research. The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.

It often takes one person's passion, born of pain, to raise awareness and start a movement. The sad truth is that it has taken a Congresswoman's loss to move her colleagues, but federal funding for research into the treatment and cures for pediatric cancer is being penned into law.

In June, the House of Representatives passed H.R. 1553, which authorizes $30 million annually over five years to fund clinical trial research, create the first population-based national childhood cancer database and further improve public awareness and communication regarding available treatments and research. That's a tall order for $30 million. It costs more than that to make one relatively small Hollywood movie.

The bill, sponsored by Rep. Deborah Pryce, R-Ohio, is called the Caroline Pryce Walker Conquer Childhood Cancer Act in memory of the lawmaker's nine-year-old daughter, who lost her life to neuroblastoma in 1999. The Senate followed suit, and President Bush signed the funding act July 29.

But as Shafer, the childhood-cancer cure advocate, notes, "the money still has to be appropriated. The next step in the process is to get Congress to include some, or--less likely--all of this money authorized in the appropriations bills that have to pass every year."

Cancer is the No. 1 disease killer of children in the U.S. and the second overall killer of children, behind car accidents. We tend to talk about it in hushed tones instead of screaming for help. But scream we should.

Research groups need collective philanthropy to fund research sufficient to eventually lead to a breakthrough--one in the form of newer, less invasive treatments, cures and maybe even early-detection screening and prevention in our lifetime.

On Sept. 5, the three major television networks, ABC, NBC and CBS, simultaneously broadcast a one-hour telethon, "Stand Up 2 Cancer," which, combined with related efforts, raised $100 million. (The organizers at the Entertainment Industry Foundation have not said what portion of that will go directly to research into pediatric cancers.) During the telecast, they aired the famous radio broadcast that launched the March of Dimes to end polio, during which singer Eddie Cantor asked all Americans to send in a dime.

Today, polio has been eradicated in the U.S. and in more than 200 countries, according to the World Health Organization. That should be a lesson as to how far a little philanthropy can go. May it be an inspiration in the fight against childhood cancer. Wish big.

Helen Jonsen is a Forbes.com senior editor whose daughter recently underwent treatment for osteosarcoma at Morgan Stanley Children's Hospital of New York Presbyterian, Columbia University Medical College.

Sunday, September 7, 2008

Have you seen any gold ribbons lately??? I think it is almost hard to believe that there so little information about Childhood Cancer Awareness Month--- SEPTEMBER is Childhood Cancer Awareness month--! I keep hoping I will read the Charlotte Observer and see it on the front page-- or turn on the news and see a PSA about it-- but I have not! I will keep hoping!! I read about someone who was asked about the gold ribbon-- she knew what pink stood for but she did not know what yellow stood for-- I bet with more publicity no one would have to ask that question---

The Milestones Walk in November is going to be really big--- we need more teams to register- I would love to see teams from schools in our area form a team in support of children- Private, Public, Charter, or preschools--- it does not matter-- Just start a (team ETES, MPTS, Selywn, Eastover, Sharon, AG, Carmel, CCDS, Latin, PDS, Charlotte Christian, Trinity, St.Patrick's, St. Gabe's... I could keep going but we all know there are too many Charlotte area schools to name!!!) and raise funds for pediatric cancer research-- I am hoping to see some new TEAMS formed in the next week-- I bet there is not a school in the area that has not been affected directly or indirectly!

Since I am hoping for so much these days --- I thought I would share this poem that I read off Julia's site--

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)

Friday, September 5, 2008

Grier had a good day at Preschool!!! There was a lot of talking about school and planning and I can say it went as well as I expected-- I would love to say there were no tears but there were and that is okay-- He said he had fun-- more information is coming now that Hayes and Grace are home!!--- So many asked how I did?--- And I can say I was fine-- Unfortunately, I am an old pro at handing him over when he is screaming to people for medical reasons --so leaving him with three teachers that are there to nurture him was easy!!! Also, I had a nice message on my phone that said he was fine and having fun!! He asked me today when he was going to get to go to Hayes and Grace's school??? I told him had two more years of practicing at preschool before we could go to "BIG" school!!!

The Go Grier Go team for the CureSearch walk is halfway to goal of 100 team members!! Thanks to all that signed up for our team-- Grier and I walked into every store at Park Road Shopping Center on Wednesday and asked them to put up a poster for the walk--- ! And I can say some stores said OK!!! I was excited to get a YES out of some people!!!

Grier's appointment at the clinic went well-- he did have to have his port flushed and a full exam-- We do not have to go back until November--- We will be in NYC next month for scans so his check-up will be done there- That will be here before we know it--- time is flying by-- our 90 days are almost up!!

Monday, September 1, 2008

NUMBERS!

Lately, while Grier and I are driving somewhere in the car or walking around Harris Teeter or just doing anything he is constantly asking me about numbers-- His favorite is the speed limit sign--
Grier- "Mom, what is that number that has a 3 and a 5?"
mom- "thirty-five"
Grier- "Mom, what is that number that has a 2 and a 5?"
mom- "twenty-five"
You can see my point-- he is obsessed with numbers and this can go on for a long time-- house numbers.. prices... etc. And it really starts to get fun when he starts making up numbers!

Today is September 1-- September is Childhood Cancer Awareness Month. You will see yellow ribbons and they are for Childhood Cancer awareness month--

Here are some sobering numbers....
-Everyday 46 children are diagnosed with cancer in this country-- (That is about 2 classrooms of kids!)
1 out of 5 who is diagnosed with cancer dies
3 out of 5 children suffer long-term effects from chemotherapy and radiation treatments
More than 12,500 children are diagnosed a year and over 40,000 children are currently being treated for cancer-
I am not trying to scare anyone-- but I think we can not ignore the numbers-- It could be your son or daughter, grandchild, niece or nephew, your child's classmate, neighbor, teammate , & friend. What would you do?


I am setting a goal of 100 ( that is the average number of people that read the blog everyday!) for the Go, Grier, Go team ! Even if you can not walk on the 15th you can still be a part of our team of 100-- You just sign up to be a virtual walker. Currently, GGG has 15 team members-- We need 85 more! Easy enough huh?

Go to www.milestoneswalk.org
click Charlotte, NC
click join a team
type a % sign in the blank line-- This will search teams
when GGG shows up in the list -- click join on the right side
you will need a name and a password-- do not use mine because it will not work- This is for your page-
I know I have confused some but it is hard to describe without doing it at the same time!

More to come later about the Curesearch Milestones walk---

Grier has a big week ahead of him-- he will meet his new preschool teacher on Wednesday- He has an appointment with Dr. McMahon on Thursday and then on Friday school starts ! We are hoping for a smooth and easy transition for him as he enters preschool with only a few weeks missed due to trips to NY!--

Wednesday, August 27, 2008

Lots of stuff to write... maybe I should post more often!

I am not sure where to start--- I am going to try to be brief --!! We have been busy getting ready for the start of school--- Yes, we are 3 days into it by now and I could not be happier to get back into some kind of routine-- Summer is long when no one goes to camp and no one naps!!!

We took a quick day trip to Grandfather Mountain and everyone had fun-- It started as "we need to get out of the house because we are going to go crazy day"--- and it ended up to be a favorite spot for Grier-- He really liked the mile-high bridge and the bears!

About a week ago, we met with Grier's wish granters from Make-a-Wish-- I think he really enjoyed the visit and has no idea about his wish--- he says "Disney" one minute and the next minute it is a remote control helicopter that is on TV! We are going to wait to see if Disney is really his wish!! It is hard to explain to him about a "wish"-- We are hoping with time he will learn the concept and come up with something--- The visit was fun and I am sure exhausting for the granters, Deb and Chris--- Grier had Chris busy outside playing golf, soccer, and baseball and then brought him inside to play wii bowling -- He was asked a lot of questions about his likes and dislikes-- As you all know all of that could change tomorrow--- That is the great thing about being 4-- So.. as you can see we are taking it slow to make sure Grier chooses something he wants-

The CureSearch Milestones walk is coming along--- It is going to be great and HUGE!!-- lots of fun things for families to participate in while raising awareness of pediatric cancer in our community--- I really thought I would have a full team by now!! I guess with vacation and school starting --- things are slow--- You all still have time--- If you want to make a team of your own that is fine too-- the more the merrier! Go to www.milestoneswalk.org to register--- This is an event you do not want to miss! This a not a competitive 5k-- so all abilities are able to participate--- And if you do not live in Charlotte you can join GGG as a virtual walker! Each team will wear their own T's--- so if you have a GGG T--- you have to join the team! If you do not--- Kerri still has a few-- email her if you want one--rnorwood@comporium.net

Also-- There is a 5k Fall Festival at Myers Park Baptist Church on Sept 6th--- go to www.cornwellcenter.org for more info--- All proceeds will go to Charlotte's Ronald MacDonald House--- I have tried to attach the brochure but can not figure out how to do it--- Anyway, This is a great cause that is near and dear to our heart due to the amount of time we spent in the Ronald in NY-- not quite sure what we would do without it!--- so we are excited Charlotte is getting one for families that are treated at LCH and Hemby--

More to come later-- my carpool duty is calling!!!

Friday, August 15, 2008

How is Grier doing???

OK-- I know most of you check this blog to see how Grier is doing-- and I have forgotten to post that the last few times so I will try to catch everyone up!! I promise I will not do too many PSA's on this post!

Grier went to the clinic last Friday just to have his port flushed-- I say "JUST"-- but actually it is a big deal if you have ever had to watch it-- I told him in the morning after breakfast-- because I knew that would ruin his appetite--- He started to ask lots of questions and we put the "magic cream" on his button--- I know-- some of you have no idea what I am talking about-- but anyway-- we ( all 4 of us)-- headed to the clinic and the discussion in the car was about being brave-- Mostly led by Hayes--- which I know amuses some of you-- :)-- Grier was a little more relaxed and not so anxious so I was hopeful this would be a quick trip-- Grier has a game face -- I guess we both do at this point-- he tends to be shy and ignore people and I tend to have that "grin" on my face! They called him back and the nurse came in with all her supplies-- Grier sat on my lap-- and clinched his face into a "grin" and it was over---Yes... we made it with no screaming and kicking! I did have them draw a tube of blood so I could send it to NY for HAMA #'s-- I was relived and started to pack up and then....GRACE--- said she didn't feel good-- I looked at her and she had no color in her face-- Our nurse quickly got her something to drink and sat her down--- She was fine after a few minutes--- We had a few laughs about it later-- I had to tell her how many times I have done that in my life and she was OK with it!

This week we had to go back to the clinic for a doctor's visit--- really a check-up.... or --"this is what we have done in NY for the last few months and here he is in person kinda visit!!" Grier was so much more relaxed because he knew his port did not have to be accessed --- It made the visit entertaining for some--- I am not sure they have seen the real Grier in a long time! He has gained weight-- he is now up to 35lbs-- and grew a tiny bit in height--- I asked about it and I was reminded that Jeff and I are not tall--- really did not need that reminder-- KNOW that all too well! We talked about what we do NOW--- I am not a fan of sitting and waiting--- but that is what we are going to do-- Dr. M will call NY and see what the tests said about immunizations-- once again there are two schools of thoughts about re-immunizations--- so we talked out that-- I was reminded that we chose to go "the NY way" --( And if we had to choose again -- it would be the same decision!)-- And to sum up the visit--- he looks good! He has the green light to go to preschool-- and we will do monthly check ups in Charlotte- We will go back in 3 weeks and have a check-up and get his port flushed-- In Oct. (first week)-- we will go to NY for a full work-up-- So.. that is it on the medical front---

Just one bit of information regarding the CureSearch walk on Nov.15th-- I have had some questions about how to join the team online---- I think it is a bit confusing too-- so I hope this helps--
Go to www.milestoneswalk.org
click CHARLOTTE walk
go to join a team
you can put in the % sign and hit search and the teams should come up---
Then you should see Go,Grier,Go---- it has to be just like this or it will not show up
click join when you see the name
It then will prompt you to do a page-- I think it is $10 to walk and it says you have to have a minimum of $200 as your goal-- They will not hold you to this-- But if you or anyone plans to walk you must be registered-- Also-- for the friends and supporters that are out of town-- you can join the team as a virtual walker---

I hope that helps-- I know it still sounds confusing-
Thanks to all that are working on helping-- Posters are being put out and sponsors have been recruited!!
Enjoy the last fews days of summer break---
AVC

Monday, August 11, 2008

"Let me know what I can do to help"

You guys have said it for months.... So I am asking!

I NEED HELP-- I recently put information on the blog (www.gogriergo.com) about the upcoming CURESEARCH walk coming to CHARLOTTE @ Freedom Park on Nov. 15th-- I asked you all to join our team--- OR make a team of your own-- I also need help in other ways to support this event--

Here is what I need you help with--

1) SPONSORS--- If you know of a business that would like to SPONSOR this walk--- This is a national charity that supports children's cancer research--- We have two hospitals in our area that are COG hospitals (Children's Oncology Group)-- Levine and Presbyterian-
There are several different levels of Sponsorship -- Please think about businesses that you know-- I would love to see Bank of America, Wachovia, Target, Lowes, Carolina Panthers, Bobcats-- Possibilities are endless-- CHARLOTTE is BIG-- And it would be nice to show everyone that Charlotte thinks children are a priority- So.. if you have connections with ANY businesses in the area please encourage them to support this cause--- I have forms and contact information--Think Local and National ---

2) POSTERS-- I have a lot of posters that need to be placed around the Charlotte area-- Getting the word out about this walk is a huge priority--

BUT Amy... "we already support the American Cancer Society... and we plan to support the STANDUP2cancer cause on Sept. 5th--" -------
Well--- that is great but if you want to support children than you need to look closely at those causes and see how much goes to pediatric research-- ACS-- is a 2 star charity --($0.22 of every $1.00 the ACS funds goes to breast cancer. Colo-rectal, prostate, lung, leukemia and lymphoma all check in at $0.13 to $0.09. The lowest is childhood cancer at $0.03 for every $1.00 the ACS funds)-- Curesearch is a 4 star charity and 98 cents of every dollar goes to research of ALL pediatric cancers- Sept. 5th will be a huge media blitz about cancer but they are forgetting to partner with a pediatric non-profit group -- Strange... when this a #1 killer of CHILDREN-- And we wonder why there has not been a new cancer drug in 20 years for children--- We need to make it a priority just like breast and colon cancer are in this country-


But what about NB research?--- I am not asking you to choose--- Curesearch covers all pediatric cancers -- In September, there will be many ways to help NB research by buying cookies--- or holding bake sales---- Easy enough huh? I am excited about getting the word out-- but I quickly get disappointed when I ask for help and nothing happens or I get told that we do not like to adopt a specific charity because we can not tell one yes and then others NO--- well--- Now you know why things in the pediatric cancer world has stayed the same and why kids lose their battle---

Please think about where you work.. where your kids go to school or preschool or daycare--- where you worship.. different groups you are involved in... YMCA, YWCA... and encourage them to make or join a team-- or even go the extra mile and help by sponsoring, putting up posters, or helping the day of the event-
Thanks-- email me with any questions--
amychristenbury@carolina.rr.com

Thursday, August 7, 2008

Save the DATE --

I wanted to let EVERYONE know that this first-ever event is coming to Charlotte on Nov.15th--

There will be so many ways to help-- !! Please save the date and come out to Freedom Park to support Childhood Cancer Research--

Go, Grier, Go!--- will have a team-- Please join it online--- I will send out an email in the coming weeks--

Please help spread the word about this event to all of your friends, co-workers, neighbors, businesses, church, schools, sports organizations, and family--- We have a chance to show how much the Charlotte Community cares about Children and PEDIATRIC cancer--

Grier's team--- go to www.milestoneswalk.org

Join the team by entering-- grier = username
gogriergo=password

OR make your own team ----

More to come soon--
Amy


FOR IMMEDIATE RELEASE

First-ever Charlotte “MileStones Walk” to Raise
Awareness and Funds for Childhood Cancer Research

Hundreds Touched by Cancer to Participate in November 15th Event

August 8, 2008 (Wilmington, DE) – CureSearch National Childhood Cancer Foundation will host the first-ever Charlotte MileStones Walk on Saturday, November 15 at Freedom Park, to benefit lifesaving childhood cancer research conducted by the Children’s Oncology Group, the world’s premier pediatric cancer research collaborative. The Children’s Oncology Group treats more than 90 percent of children with cancer in North America.

The MileStones Walk for Childhood Cancer is a fundraising event that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure. Directly or indirectly, nearly everyone knows a child or family who has been touched by childhood cancer, the #1 cause of death from disease in children. Every school day, another 46 children, about two classrooms of students, are diagnosed with cancer in the United States. MileStones walks emphasize fellowship and sense of community.

“We invite everyone in the Charlotte area to come out on November 15th and be part of the cure for childhood cancer,” said Sharon Sullivan, event chair.

“The loss of even one more child to cancer is one too many. The money we raise will go toward research that will end this disease. Fifty years ago, the cure rate for childhood cancer was less than 10%, now it is approaching 80%. But we will not stop until we get to 100%, and can guarantee every child with cancer the gift of a long and healthy life.”

“CureSearch thanks the Charlotte community for hosting this event,” added Stacy Pagos Haller, Executive Director of CureSearch. “It’s a great way to come together and honor those children and families who are affected by childhood cancer.”

Registration opens in Freedom Park at 9:00 am. Opening ceremonies and the walk begin promptly at 10:00 am.

For more information about the Charlotte MileStones Walk for Childhood Cancer, visit www.milestoneswalk.org, or contact Natalie Cole, National Events Manager, at (240) 235-2215 or Natalie.cole@curesearch.org.



# # #

About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,500 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

Monday, August 4, 2008

I can not believe it is August!! Our time at home is flying by as well as summer! -- I guess because we are staying so busy--- The kids and I went to HHI with the Caldwells last week- Jeff came down for the weekend to enjoy the craziness! - As you can see from the pictures Grier had a great time-- He took his last Accutane pill ( hopefully!) on Sunday and we were very careful when were out in the sun-- it did not take long for him to burn even with SPF 70-- I think we spent more time applying "scumscream" than actual time in the sun-- Oh Well!-- we made it all week with skin intact and not burned-- Before we went, he WAS a little cautious around water but after this week I can safely say he will need some swim lesson ASAP-- He was crazy in the water-- trying to copy everyone he saw--! When we asked him what his favorite part was-- he said... The boat ride (we went on a dolphin watch), The Deer Hunts ( a Caldwell tradition!), Putt-Putt, swimming, bike riding, and going to the beach and seeing some "star fishes"--- as you can see we were busy! So busy that for a brief moment we almost forgot about the last year! I did lose a little sleep when he woke up at 3am and threw up-- but he quickly fell asleep and I just waited for more--.... he ended up sleeping until 10am that morning-- who knows WHY?-- but it does bring back memories of how all of this started- And of course-- I was reminded when my phone rang and it was Memorial Sloan- Kettering....My stomach almost dropped because I had no idea why they would be calling--- All they had to tell me was that we are scheduled for scans the week of Oct. 6th---Ahhh! Didn't they know I was on vacation from all of that!

This week-- we need to go to our clinic here in Charlotte-- I think I will have them do a HAMA blood test so we can send it off-- just to see if his numbers have decreased-- I also just want to touch base with the Doctors here so we are all on the same page-- That is about it on the medical front--

Thanks to all that donated to The Band of Parents--- Since I have some downtime now-- I am going to be working on getting the word out ( you may get sick of reading soon!!)--- Pediatric Cancer Funds need to be raised-- I am also working on some other things and have been offered some help by Senator Rucho-- NC can do more for families dealing with this-

Thanks for checking in on Grier--- Please remember our friends, Isabella and Liam, who are fighting really hard right now--

Tuesday, July 22, 2008

Want to help make a change???

I wanted to share a new site I became aware of through the BAND of Parents..... It is called www.change.org. The Band of Parents are hoping to raise $25,000 just by reaching out to NB parents and then they reach out to their support network, and that support network reaches out to their friends and family--- Sounds easy enough doesn't it???? I put it on GGG a few days ago and forgot to even mention it and our total is at $450- I would love for everyone to forward to link to people they know and challenge them to make a $10 donation to support NB research at MSKCC-- Let's see how fast the $$ amount grows-- It is kind of like a chain letter that we email around all the time!

There are new treatments coming soon at Sloan-- most for patients that have relapsed but this money will help the dedicated researchers save some children-- So.. Ready, Set, .... EMAIL all your friends and pass the challenge on---

You can click on the buttons below or copy and paste this link---

www.change.org/myfundraising/gogriergo

Saturday, July 19, 2008

Praise and Prayers!

I had to post this cute picture of the lemonade stand that these kids did all by themselves-- They did a great job-- Thanks Everybody!!


Grier finished a whole week of VBS-- he had a great time-- He brought home lots of stories about what happened during the day and I enjoyed every minute of it-- I even had more information ( a little too much at times!)-since Grace was with him all week-- While they were gone, Hayes and I were busy purging the attic-- At one point it looked like we were moving!! But it feels so good to "clean house " of so much clutter that had been ignored for 1 year!

I loved reading every one's excitement over Grier's latest test results-- It is a milestone-- I was looking at pictures on my computer and Grier said, "Hey .. who is that?"-- I told him that is you! Well-- he did not recognize himself without hair!! He quickly changed the subject and asked some other question!!

As we try to enjoy the next 90 days off treatment -- I still have a sick feeling when he says "my head hurts" or "my tummy hurts"-- knowing more often than not it is a normal childhood ache but remembering he is still a NB survivor and we are going to be living in 90 days intervals for a long time-


I do not normally post about kids we know-- but I had so many emails about this little boy last Fall when we were going to MSKCC for the first time-& I also received so many copies of the article in Parent's Magazine that showed a day in the life of Liam going through the all too familiar procedures at Sloan-- so I thought you would like to know.........
I would like to ask you all to say a prayer for a family that we have met-- and I am sure some of you remember him on TV ( GMA & CNN etc.) --his mom did the Cookies for a Cause campaign last December-- 96,000 cookies and $400,000 for research at MSKCC in two weeks ( and Liam was still in active treatment at the time!) and Parent's Magazine-- Liam Witt is a 4 year old whose story is just like Grier's-- he was diagnosed a few months earlier-- and basically was a text book case for NB-- He went through all treatments at MSKCC-- had surgery, radiation, and the optimal rounds of 3F8 before he HAMA'd - showed NED multiple times and he was there doing his 3 month scans last week with us and the CT scan saw a shadow above his kidney- After several extra tests-- the MIBG, PET scan, bone marrow, and urine were all clean, but there was still a small shadow that no one could explain-- so the NB team decided not to take any chances and go in surgically and look to see if it was scar tissue from his previous surgery-- And unfortunately it was not-- he had a dime sized tumor in the original location and it was NB-- It was removed yesterday and he is recovering-- He will begin a new treatment plan next week-- This is a strong family that is not only fighting for Liam but for all NB kids through their work with the Band of Parents-- And once again we are reminded that life can change in a minute without any warning-

Friday, July 18, 2008

Three Letters!!

NED-- ( No Evidence of Disease)!

All of Grier's test came back and there is no sign of NB-- we are very thankful but still very cautious -- I hate to be that way but we have seen how sneaky NB can be---
We will continue to go to NYC every 3 months for a full work-up for the next several years-- It is bittersweet that he is off 3F8 at the moment--he will no longer have to endure those painful treatments due to the fact he is HAMA positive. He will finish accutane on July 27th and after all that we just wait and see what happens-- So.. for the next 90 days he will hopefully be as normal as any other 4 year old-- enjoying the rest of summer, starting school in the Fall and loving just being 4!

Thanks for all the prayers --

Monday, July 14, 2008

"Happy to say all scans show no NB!"

"Happy to say all scans show no NB!" This is the email I got from Dr. Kushner today! It was short and to the point but that is all I needed--
Now we just wait for the bone marrow and urine tests to come back-- It usually takes 5 days--

Grier had a blast at VBS-- Grace was with him and she loved being a helper--- Tomorrow I may leave -- it will be the first time since March 2007 that I will have 3 hours to do something!! Hmm-- what shall I do with all that time!

Saturday, July 12, 2008

Home again!

We woke up very early this morning (5am)-- and got ready to leave-- we had to clean our room quickly and pack up the sheets and we were done-- we had not even been in the room 24 hours!! I hate that we got a taste of what it was like to stay at the Affinia--- that was nice and we had some room to spread out-- and we did not have to clean to leave!! Ahhh-- but the RMDH is home to us and to so many we have met --so that is our first choice--- and it is $35/night!!

Our ride picked us up at 6am-- we rode with another family from Ft. Mill-- They had just recently moved from FL and were here for scans as well-- They have been fighting this fight along time-- 4 1/2 years-- wow! She has done so many protocols developed by Sloan and on some she was the first to participate-- it was very interesting to talk to her and learn some things--

We made it to our house by 11-- and had a low key day-- Around 4 we headed out to Grace's swim meet--- So-- we are back in the full swing of things already-- H, G, & G-- have enjoyed the afternoon wrestling and playing-- and in between screaming at each other-- Grier would occasionally remind them that he is SO glad to be home!!

Grier is going to attempt to go to Veggie Town this week -- ( Vacation Bible School!!)--- He has talked Grace into helping in his room so I can not wait to see how that goes--- I think it will be fine-- especially with Grace --but we are starting cycle #6 of Accutane on Monday and you never know how that will change his mood!

I will update as soon as I hear results-- I believe they have to be good-- he looks and acts so well-- but I know that things could be going on inside his little body-- so we can not just rely on outward appearances!!

Friday, July 11, 2008

Done with the Work-up and at the Ronald!!

We are finally at the Ronald--- we tried to check in several times today and after three tries were are in a room-- no... not 810!

Grier did great as usual during the wait for the MIBG scan... waking up from anesthesia... and bone marrows-- We are done with all tests and now are just waiting--- the hardest part for us! It might not be until Monday before we hear anything-

I think being around MSKCC changes my mood a lot-- there is so much sadness here-- as well as hope and determination to beat cancer-- The more time we spend here -- the more people we meet and see how NB has affected their lives-- The most common thing is that things can go from good to bad in a second--- so it makes you try to enjoy every second while you have it-

Tonight will be low key--- we have to get up very early and check out and head to the airport--- Thanks for checking in on us this week--

Thursday, July 10, 2008

Gosh-- where do I start? We have been so busy today-- mostly with fun things!! We left our hotel room and went to breakfast-- I think it was called "Eat Here Now"-- the usual NY diner with a catchy name!-- Then we headed to 42nd street-- on the way we were noticing lots of statue of liberty look-a-likes-- (each were painted with a different baseball team)-- So, Grier and I were on a hunt to find them-- it made the walk go by really fast-- They were on display for the All-Star Game that will be played here next week-- Anyway, we found a lot of them--!! I have pictures- but they will have to be downloaded when I get home-- I do not have the cord!

As we were walking back from 42nd Street-- we stopped in Toy R US-- and Grier wanted to ride the Ferris Wheel--- this is a first for him so I was excited he wanted to try it! We went into a great popcorn store-- Garret's on 5th Avenue and Grier got popcorn--- We continued to walk back to our hotel on 64th street and Grier fell asleep-- so we came up to the room for a quick second before we had to leave for our 2:00 appointment--- We waited a long time for our quick radioactive injection and then headed up to the PDH to sign consents for his Bone marrow test tomorrow-- It was almost 4:15 by the time we left !!! We saw Dr. Kuschner in the hall and stopped and talked to him a bit-- we asked if the CT/MRI was ok and he said he had not heard so he is assuming "yes"-- He said if something looks out of the norm they call him immediately--- Let's hope this is the case and our MIBG will be as good!

As we were leaving we an into our Social Worker-- she could and could not believe what happened in regards to our reservation at the RMDH-- this happened to 6 families this week-- She did suggest to us that we turn our receipts in to her and she will see what Sloan can do-- since the RMDH was overbooked-- I will --but also will not hold my breath-- but I guess at $400( medical rate!!) a night anything will help! We are booked for tomorrow at the RMDH-- it will be a short stay because we are leaving at 6am on Saturday--- I also asked for help in dealing with USAir-- I booked our reservation last night and used a credit I had when we had to change dates due to a cancellation-- they charged us $100 change fee per ticket--- and I talked to three supervisors pleading the case of medical reasons for the change-- they said that is not a valid reason for their company-- I hated to even use the reason-- Our social worker said she had never heard them say that before-- but since all the cut-backs everything is changing-- Even corporate angels have made lots of changes and it is worrying her--

Since we skipped lunch-- we went to an early dinner and Grier must have loved the pizza at Patsy's-- I have never seen him eat so much!! We ended up walking MORE--- Grier wanted to go to Dylan's Candy Bar-- He got a FUN DIP and has enjoyed it so much!!! I love walking in NY during the summer-- these days are LONG-- and the weather has been pleasant-- I did give a few NY'rs a flat tire today with my stroller--- they just stopped in front of me and I did not notice!!!- Oops!

We are back at the Affinia ( nice hotel --by the way!!) and getting ready to pack and settle down for the night-- I am going out one more time for a water run at the CVS around the corner-- Grier will be NPO ( no food or drink)-- after midnight since he will be under anesthesia tomorrow-- and he wants a snack-- !!

Grier said-- Mom.. we are going to be staying at 3 buildings this trip!!! He is right--- and the third and final move will be tomorrow after our procedures at the Hospital --

So-- lots of prayers tomorrow that nothing "lights" up during the MIBG scan-------And that there is a room at the Ronald!

Wednesday, July 9, 2008

OK-- we can start checking things off-- urine collection-- DONE ( a very LONG four hours!!)--- MRI of the brain and orbits-- DONE ( 1 HOUR LONG)----CT of the abdomen , pelvis, chest-- DONE (15 minutes)--- Tomorrow-- all we have to do is the radioactive dye injection---@ 2:00 ???! And Friday is the big day-- MIBG scan.. bone marrows and possibly the first set of immunizations---

We met with the NP-- she looked him over-- he weighs 33 lbs! Talked about HAMA-- he is positive again-- his number is 6000--- it needs to be below 1000!! So, we will keep checking every month-- still no answer on what will happen if he becomes negative again-

Thanks for all the emails-- I guess you can tell I am stressed-- and the hotel situation did not help-- We checked out of the Helmsley Medical tower today around 8am and left our bags there until we were done with scans--- Around 1-- we walked back and headed up to destination #2--- and there was a mix up in the reservation- no I am not kidding! I think this may go down as the worst NY ever! - After a long conversation-- we got a room here for tonight and tomorrow--Guess what? We were in room 810 last night at the Helmsley and tonight we are in 810 at The Affinia-- weird huh? I told Jeff we should go get a lottery ticket with 810 on it!! We had lunch at Jackson Hole-- I had to tell Grier that Mrs. Leary wanted him to go there because he wanted Wendy's (grrrh!) -- It is right across the street from our newest hotel-- and the funny thing is that we looked all over for it in our previous trips!
On Friday, we will probably be at the RMDH-- Flights are booked! I am still going to call but it looks like it will be Saturday-

That is it for now-- we will sleep well tonight!! The room is nice and quiet!

ps-- We did make it to FAO today-- Grier made a custom HOT Wheels car-- I will post a picture soon- Retail Therapy right? or just a FOOL!!! That is the funniest concept-- you pick your car on a computer... choose a color.. wheels.. and an engine... and then it shows it being made on the screen--- about 3 minutes later-- the car comes down the shoot in a little clear box!! I thought it was going to be really CUSTOM--name etc.-- it is basically a hot wheels in a plastic box for 20 times the price!
The apple store is right beside FAO and I told Jeff-- that we did not need a room-- we could just line up with our lawn chair with the 8 (so far) and camp out and wait for the new iphone coming on Friday!! I think he said-- Are you crazy?--- :) I may be cuckoo by the time this is all over!!

Tuesday, July 8, 2008

Well-- I should start by saying I have calmed down a lot before writing this post!

Our day started as usual-- busy with 3 kids, trying to pack, and passing off the torch to my mom so she could take over for us for a few days at our house!

Our flight was fine-- delayed a little but fine-- and Thank God FREE! We arrived at the RMDH a little later than normal and Jeff immediately left to go to the hospital to get our bag of "goodies" (no-- not anything fun-- SSKI drops!!( the worst 7 drops one will ever taste!)-- a urinal... a contraption to keep the urine in-- and the contrast that Grier has to drink tomorrow at 6:30 am!)-- I went in to set up our room-- and then we were going to go to dinner-- Well--- There was a problem--- NO ROOM AT THE INN~ I said.. WHAT?-- I emailed yesterday to let you all know I was not coming until today-- and they did not get it so they gave our reservation away today-- NICE-- I asked-- Why did you not call?-- ( They have all of our numbers!!)-- Oh-- "We do not do that!" OK-- So,-- I was too mad to cry-- and they were NO help! I asked for numbers of HOTELS around the hospital--- and they did not have a suggestion-- And I am getting really mad-- because they had no compassion-- I was not there for a vacation-- So, I called the social worker-- she gave me some numbers to call-- meanwhile I am on the phone in the lobby and Grier is getting upset and wants to go HOME!! After a few calls-- I found a room for tonight-- packed Grier and our luggage up and attempted to walk to the hospital to get Jeff-- did not get too far!! Way to many things to manage-- we waited outside of the RMDH until Jeff got back with our bag- While I was waiting outside the lady that gave the reservation away said-- Did you find a room? I said yes... and she said was it expensive-- I almost said *#% woman does it really matter at this point-! But I did not! So-- long story short-- We are not homeless tonight-- we are at a medical hotel across from MSKCC-- and tomorrow we will have to check out-- schlep our bags to the hospital while we are there for a full day of scans! After we finish we will go to another hotel -- about 9 blocks up and we will stay for 2 nights-- And I am trying to come home Friday night-- The RMDH does not know when they have an open room -- so instead of staying Friday night at the $$$$ room -- we will just come home on USAIR--!

Yes -- I have learned a lesson-- I should not count on things going smoothly-- I will call ahead and check myself-- I will just add it to the rest of the stuff I had to do yesterday! But the RMDH should call someone before giving away a reservation that someone has had for over a month-- courtesy to say the least-- and they need to remember why these families are there-- NOT VACATION--!

We are now in the midst of the 1st hour of the urine collection!!! We will be done around 11pm! We lost a lot of time trying to find somewhere to stay and this is the best day to do this test!! Just bad time of day!!!

We are suppose to be at the PDH-- around 7:30-- but our procedure is not until 11am! Why so early? Well-- the 9th floor is crazy-- sounds overbooked and we will be waiting to get a slot to get cleared for anesthesia!-- His MRI and CT will be around 11am-- under anesthesia-- so we should be out of the hospital by 2-- to check-in to our new room!

I always say-- tomorrow will be better and it better be --- or at least easier! And I guess we can forget getting Mets tickets from the RMDH-- oh well-- I know we will be here for many more games! Cancer SUCKS!!!!!!!!!!!!!!!!!!

Monday, July 7, 2008

Jeff, Grier and I will leave tomorrow around 1:00 and head back up to NYC-- we waited as long as we could and it paid off-- corporate angels came through wiht a flight today--
( with a little inside help --!) We do not have a return flight home yet-- but I hope to be home by Saturday -- we will see!

I am packing and getting ready-- It is easier now that it is not cold in NY !! I hope Grier has a few good days this week-- the last couple of trips were for 3F8-- and he was not feeling good-- Maybe Thursday- we can get him to a baseball game!- I think the Mets are in town-

Thanks for checking in--

Tuesday, July 1, 2008

Well- Since it is JULY 1st--- I thought I better update!! Summer is flying by!! We had a great time at the beach last week--- I think I could have stayed a few more weeks-- you can not beat waking up to seeing and hearing the ocean! I still can not believe how different this year was-- Grier only had to take Accutane 2 times a day (he was very proud to show everyone how he can swallow a pill too!!) Last year, he was IV antibiotics every 8 hours-- IV nutrition... and other meds--- a port that we wrapped every time we went outside--- ETC. !!! Sunscreen (aka "scum scream")-- was the main issue this year-- and we made it without being burned!! And the only medical emergency was for Jeff!! Yes-- we had a 911 call and they came quickly and checked him out--- he is fine now and seemed to have a quick virus??? Who knows-- ! Never a dull moment!

Before we left for the beach-- we were busy with swimming and baseball--- I was making arrangements for our next trip to NY-- and a referral was made for Grier's Make -A- Wish trip! Exciting huh? Hayes and Grace are trying to talk him into Atlantis-- and he is set on Disney-- We do not have a date yet-- and it all will depend on the treatment plan that we follow next-- AND when we can take more time off from working!!

We will head to NY next week for scans-- this time they have added a MRI of the brain-- I was a little thrown off by this at first but after a few questions I feel better-- NB Relapse happens often in the head/brain and they have started doing this MRI every 6 months so they can kept closer tabs on the area--all the other scans will continue to be every 3 months-
So-- He will have an MRI and CT scan on the Wednesday-- then on Thursday will have his MIBG injection and on Friday-- it will be the MIBG scan with bone marrows- I hope we will go on Tuesday-- but I am not sure yet! I hope to be back Saturday morning-- the worst part is we will miss the All-Star tournament that Hayes is playing in!!

We went and had the HAMA test done yesterday at the Charlotte Clinic-- and the blood is on its way to NY-- I am not sure exactly how much it matters --BECAUSE we found out that since he has gotten four rounds of 3F8 -- this may be it for the current protocol he is on! I know some of you are confused but there are a lot of different 3F8 protocols-- we started NED ( no evidence of disease)... it was he first remission ... and he tested HAMA positive before round 4-- So, hopefully our scans will be good... NED! And the team will meet to see what to do next- He still has one more cycle of accutane to complete too- Not only do we have the anxiety of scans next week but also waiting to see what is next!

I am sure I have forgotten lots of important information!--- There are some people I would like to thank-- Kim R.-- for the gift and the anonymous gift that was given to us by Ted ( Jeremy's Dad)! Please tell them thanks from all of us!

There are still lots of magnets left--- Anyone have any ideas how to get rid of them???! And a few T-shirts!

That is it for now--- I will update when I find out our plans for next week!

Thursday, June 26, 2008

Update coming soon--- still on Vacation!

Sunday, June 22, 2008

Friday, June 13, 2008

We made it home --- and we had an eventful day!! Grier's 3F8 treatment went well--we got to MSKCC at 7:50-- I was expecting an easy day but it was about the same as the rest of the week-- lots of pain and hives-- He also had the same reactions to the GM shot ( this shot increases his white blood count)--lots of welts at each injection site--

We left the hospital at 1--- walked back and he rested for a little while I made trips down to the lobby to drop off our bags and check out! Our ride came at 2:30--- and the real fun started.... the driver asked me where Morristown , NJ was????-- I had no idea!! I called Corporate Angels they said they did not know how to get there--- and I should call the airport--- So, I did and got some directions-- I was a little worried at that point--- THEN--- we were stuck in traffic on 5th Ave. -- the street we were going to turn on was closed-- so after 25 minutes we ended up back on 72nd and 1st-- 1 block away from the RMDH-- The driver asks what time I need to be there and I said 4pm-- and then his road rage started-- FUN!!! He was driving like a NY taxi driver-- and honking the whole way to NJ -- we finally made it 15 minutes late!! I guess it was good that he was going 80+ on the NJ Turnpike--- or we would have been even later!

Our flight was great-- thanks to BOA for giving us a ride home--

Grier and I are very happy to be home--- We return to NYC the 2nd week of July for the dreaded scans!!! I am going to try not to think about it until it gets closer-- On Monday, he starts the 5th cycle of accutane--- and that is it!! He had a test done and he no longer has to take bactrim to prevent a type of pneumonia --- but the tests also means he is ready to be immunized again ! The first set will be done in July-- but it is starting over-- so it will be a process just like a newborn goes through-

That is it for now--- off to unpack and sleep in my own bed!!!!

Thursday, June 12, 2008

We just got back from the hospital!! We are done with 4 rounds of 3F8-- and today was very different! He went through the entire 30 minutes w/o much pain--(just a request for a hot pack on his tummy)--- then the 20 minute flush started---after 5 minutes-- he was uncomfortable -- then the hives popped out on his arms and face-- then he had lots of pain---! I know I sound excited to see pain but he needs to have some reaction to know it is working-

We are going to the hospital in the morning--- we have a flight in the afternoon and a nice family said they would switch with us so we can make our flight home!! We will be on a tight schedule but if all goes well-- (cleaning, packing, checking out and the 5th round of 3F8 -- etc.) We will be home in Charlotte by 7pm!

Grier is resting right now-- his face is just as swollen as yesterday-- looks like he had his wisdom teeth pulled--

Hopefully, the next update will be from home-- Thanks for checking in!! We are surviving very well in NYC together-

ps-- His ANC came back and he is not nutrapenic-- they said it drops on Wednesdays of treatment and usually rebounds the next day-- So if he wants a turkey sandwich he can have it!!

Wednesday, June 11, 2008

Today was much like the other two days--- except his pain was in both arms instead of both legs-- He slept for most of the afternoon-- woke at 5:30 and we walked back to the Ronald-- We did have a visitor today-- Jeanna was here on business and she came to visit at MSKCC-- walked back to the RMDH with us-- we hung out for a little bit then -- walked to Crumbs! We got something for Hayes' birthday-- Thanks It was nice to see her!! Grier was out for all of it--- and now he has a HUGE headache--!

The other news of the day is that he may be nutrapenic-- GREAT!! We will know for sure tomorrow when they draw labs again---So-- We need to be careful-- no deli turkey for him tomorrow until we find out for sure!!

Tomorrow-- we will go at noon again! Afternoon schedule is nice because he is alert for most of the day---but it makes a long day of waiting for what is to come! We may have a flight home on Friday-- I am waiting for Corporate Angels to let us know-- If we do... I am trying to get us switched to morning shift so we can make the flight-

2 more days to go--

Tuesday, June 10, 2008

*** Last week the PDH held their annual prom for the kids-- it was on ABC News World tonight--- very cute story! There are a lot of familiar faces in the video--- Recently, Sloan was ranked one of the top Children's Cancer Hospital-- watching the video will help to see why!!!

Cancer Patients Celebrate Their Lives at Prom
http://abcnews.go.com/Health/story?id=5040470&page=1

We are back at the RMDH--- today was almost as long --- and the pain was just as bad-- he had 2 larger dilaudid pain rescues today--- and almost got a 3rd! The Dr. is pleased with pain like that-- as he said... it is good to see him in the morning acting like nothing has happened and then to have pain like he is having means the antibody is doing something!! Let's Hope!

He is slowly coming out of his narcotic haze-- I would just like him to sleep normally tonight!! He went to sleep at midnight last night and was up by 3am-- telling me he could not sleep anymore!!! He fell back asleep at 5:45-- !!

So far -- Grier and I are fine in NY by ourselves-- we are so used to this it has almost become an easy transition--- The staff here is so good -- I am certainly not the first to do this w/o another adult-- people do this everyday-- and some live here separated from their families for a long time-- You do what you have to do!! We are missing Jeff -- but some of us must work!!

We are missing a lot at home--- the last day of school-- I have missed that the last two years!! Hayes and Grace seemed very excited about school today-- report cards were great-- and they got some awards-- not sure what kind yet-- hopefully I will find that out later!
Thursday... Hayes will turn 11!! He did tell me he would like to wait to celebrate his birthday when I get home!! That was nice--- I am feeling guilty that I am missing that too--

They had a little b-day party for Grier at the PDH today-- they had an ice cream cake and a couple of presents--- he did not want cake --- but has enjoyed the basketball game they gave him-- and a "REAL" baseball--

That is it for now-- I need to figure out what he wants for dinner-- if anything!! And I need to figure out the A/C in the room--- we are HOT!

Thanks for all the posts-- they are fun to read--- Do not worry about walking around NY-- I think are almost "NEW YORKERS!!" WE got stopped for directions the other day!!!!

Monday, June 9, 2008

Today started BRIGHT and early--- around 6am!!! Not bad unless you go to bed after 12am!--- Grier fell back to sleep for another hour and then... I woke to " Can you turn that down?"-- I am assuming he was talking about the street cleaners-- the loud motorcycle that drove by etc.!!! We left the RMDH around 9-- he chose Lenny's for breakfast--- surprised? Well-- I was when he ordered a turkey sandwich!-- I didn't care-- because I knew that was going to be the best meal for him today-- I tried to walk around NY but it was too HOT-- we went back to the Ronald-- and hung out and waited to go to Clinic--- The hardest part of the day was the anxiety he had about what we were going to do at the clinic--- he was worried about the shot-- being accessed and the list goes on-- the finger prick is always at the top of the list!!!

We finally got there at 12:15--- and I heard the morning shift had not started yet-- so we hung out in the playroom!!! Yes-- you heard me right!! The germaphobe went into the playroom! After trying to figure out a game on their wii-- we were called back to be cleared for 3F8-- they said he looks good--- Grier cried the almost the whole time--- occasionally telling Ursula about something-- HOMERUN derby... his Birthday etc.--- but he was tired and not used to doing this-- it has been since mid-April! He has gained weight-- and gotten a bit taller!! After all the talking--- we checked in with Kasey-- our nurse for the day-- I told her I needed help to give the GM shot-- and she did it for me and accessed him--- not fun-- he hates both--- but something we have to do! He fell asleep soon after all that-- and around 3:30-- we finally started 3F8--- He had LOTS of pain---he woke up 15 minutes into and his pain lasted 35 minutes-- he did get sick and I called for help-- Kasey hung out with me until the flush finished! He recieved all 4 rescues today-- which is a first-- tomorrow they will change it up a bit due to his increase in weight--

We left around 6-- walked back and he slept a little while-- he woke up in a fairly pleasant mood-- and we went to the playroom at the Ronald-- yes-- I said that AGAIN-- and played the "boat" video game-- I have tried to talk him into eating but he is not interested-- he did want a coke-- so we took a walk to Duane Reades-- Gristedes ( the closest grocery store has closed!!) Right now, he is awake--watching a movie and having residual leg pain-- I am shocked he has done so well since today was so hard! The one good thing about today was he was able to tell us exactly what was hurting-- so we could put hot packs on it-- and he even asked for medicine-- all while he was doing his breathing exercise-- It must be because he is 4 now! :)

So-- we are done with the first day--

Sunday, June 8, 2008

Greetings from the Ronald--

We have had an eventful day!! But what fun would a 4th Birthday be without things to do and places to go--- especially NYC!! AHHH!

Grier enjoyed a brief birthday celebration-- he opened a few gifts.. had the first cake of many-- and enjoyed being sung to by Hannah Blanton and friends at church--Mrs. leary... and Anne and Mac-- Grace said that he got more phone calls than me today!! He likes to talk on the phone!!

We left Charlotte around 5:45--- we were going to land at 8 at West Chester-- but we had some weather delays-- and did not make it to West Chester after all--- ended up in Teterboro-- and had to reroute our van that was picking us up to take us to the RMDH--- We finally made it at 10:30!! We left the RMDH and went to get a slice of Pizza-- go to the grocery store to get a some water and our Gristedes was closed!!! I still can not believe Grier and I were out walking first Ave at 10:45!!! Crazy!! It is now-- 11:45 and Grier is still up!!! What a crazy day---

I can cross this day off the countdown--- Grier and I made it to NY and are in our room and ready for bed! Yes-- It is almost midnight!!-- I will update tomorrow-- it will be late -- I am sure!

Saturday, June 7, 2008

We have a plan!

We have ended yet another CRAZY week--- I know... 3 kids makes most weeks hectic!

Grier and I will fly out Sunday night-- thanks to Corporate Angels again! We should get to the Ronald by 9pm-- Jeff and the kids will stay here so they can finish up school, go to their awards day, swim and just begin summer vacation! We do not have a flight scheduled to come back to Charlotte -- but I am hoping to come back Saturday or Sunday-- Grier always gets excited about going to " NEW YORK CITY"-- he has made his pile of what he is going to take-- "grey" cat is on top! Occasionally, he will asks-- "why" are we going to NY again? And I tell him we have to get some medicine to keep you healthy-- and he says ... what kind? And I tell him the kind you get when you hold the "blue tube" (oxygen tube!) every day at the hospital! And he says--"OK"- Our first roommate called 3F8 the "hurt medicine"--She is a little older-- and looked forward to each morning... getting the "hurt medicine"--That is how routine this therapy is to the kids- and the fact that Dilaudid must be a great drug! I am sure as he gets older he will not be happy with my simple explanation of what kind of medicine--

Monday might be the longest day ever-- we are doing something a little different-- we are going to be on the afternoon schedule for 3F8--- it just means we will have to be at the hospital @ 12:15-- instead of 8:30--- Mondays are always long due to waiting for tests and recovery time and we usually leave around 4-5 so who knows what time we will finish when we start well after 1pm!

I think a lot of people loved the lemonade stand idea--- I think I like it the best because it empowers kids to help--- and the funds actually go to a children's cause--- A lot of times kids are raising money for adult causes---! The website is great-- you should take a look at it if you have time- There will be a stand on our street-- sometime this summer---! Grace loves to sell lemonade!

That is it for now-- We have a busy and HOT day planned at the ball field-- and I have to pack a little too--! I am hoping that NYC is not as HOT but I have been told not to count on it--- those buildings and all that concrete hold the heat !!!!

**ALSO** Lots of GGG T's are being spotted around town--- and I am enjoying hearing where and who was wearing them!! A huge THANKS to Arboretum Pediatrics--- I hear they all wear theirs on Friday at the office!!! There are a FEW extras in most sizes--- if you want one email Kerri-- rnorwood@comporium.net -- They will not be reordered so act fast if you want one--

Thursday, June 5, 2008

One cup at a time!

Did you hear about this great fundraiser on the radio? I have been asked quite a few times about Alex's Lemonade Stand (www.alexslemonade.org) and think it is a great way to bring awareness and money to pediatric cancer-- Who does not like to hold a lemonade stand in the summer? I went online to find out if there was a "grand" stand in Charlotte, NC--- and could not believe there was not one! ( maybe next year? !) The closest is in Fort Mill, SC and it is this weekend--- so if you are in the Baxter area-- check it out- See article below--



Taking a Grand Stand Against Childhood Cancer
Submitted by Gillian Kocher (Alex's Lemonade Stand Foundation)

Baxter Families Host Grand Stand in Fort Mill , SC...Alex's Lemonade Stand Foundation teams up with Country Time Lemonade

Families in Baxter Village will host their very first Alex’s Lemonade Stand Grand Stand presented by Country Time during the 5th Annual National Lemonade Days weekend on Saturday, June 7, 2008 at 10AM-4PM, 951 Market Street , Fort Mill , SC . The Baxter Grand Stand is a collective effort of three families who have each personally been touched by childhood cancer. Brad and Lorie Lower's daughter, Louise; Geoff and Heather Lux’s son Austin; and Scott and Jennifer D eNobile’s son, Vincent were all diagnosed with neuroblastoma, a type of childhood cancer. The fact that Louise, Austin, and Vincent are all healthy is nothing short of miraculous, and the families continue to look for ways to fight the deadly disease, ultimately leading to better treatments and cures.

Lemonade Days is a three day national event that grew out of Alexandra “Alex” Scott’s front yard lemonade stand, and is held every year over the same June weekend. During Lemonade Stand, dedicated volunteers host thousands of Alex's Lemonade Stands across the country, raising over $1 million for childhood cancer research in one weekend. June 2008 will mark the 5th Annual Lemonade Stand with an estimated 10,000 volunteers at over 2,000 Alex’s Lemonade Stands around the nation. It is set for June 6th, 7th and 8th . To date, Alex’s Lemonade Stand Foundation, a registered 501(c)3 charity, has raised more than $19 million towards fulfilling Alex’s dream of finding a cure for all childhood cancer, funding over 80 research projects nationally.

Wednesday, June 4, 2008

Update-

Well-- Here is the real story--- Sloan called this morning--@ 8:20am and said he was HAMA negative and we need to be in NY in a few weeks-- It just so happened it was the week of our vacation-- so I told them it would not work that week-- I already had scans planned around it and told them we would not be in NY during that week -- Well-- after being told the schedule was set-- I just had to wait and see--I waited almost all day and got the call that said it will happen next week- We will leave on his birthday to head to the Ronald and he will have 3F8 treatments all next week-- I will begin giving him shots today!

It all worked out -- I guess-- We will miss a ton next week because of all the year end activities-- & Hayes turns 11 on the 12th-- !

Now-- I need to figure out how to get to NYC! I am sure I will update before we leave or on Sunday when we arrive ---

Grier is HAMA negative--- Which is good--- BUT there are some scheduling issues that I am having to deal with today--- without much control! I assumed we would go Monday-- but that was not what they said-- so I am in a holding pattern today trying to get them to change the schedule--- I will update as soon I know when we will go to NY again-

Thursday, May 29, 2008

What a day!

So many things are winding down because summer vacation is almost here but there are so many things that need to get done right away (forms to fill out, projects, etc.)--- Today was a crazy day for Grier and I--- As I think about it now that he is asleep-- I can not believe he did so well with all that we did today--

Today was the last day of preschool--- I truly think he will miss going. He looked forward to going and talked about what he did that day for days after!
After school, we went to clinic for a HAMA blood test--- not a favorite activity for either of us-- he got through it with only a few tears-- Sharon, Dawn and Jennifer were trying really hard to distract him-- but he is smart enough now to remember what will happen after the "magic" cream aka lidacane goes on his port-- We went to lunch... lost the parking deck ticket--- jumped through CMC red tape to get a free pass to get out of the deck....went to Kinko's to mail the blood to NYC ( a new guy helped me so we will say a prayer it gets there in time!)...went to Centura to get forms notarized ( and met some really nice people that recognized my go grier go bracelet... see there is "power in a bracelet!"--- and then asked if that was "Grier"!! He entertained them for a little bit-)... dropped off a generic form of Accutane to exchange for the brand name version at Walgreens.... picked up Hayes and Grace... went to swim team ...... dinner.... gas.... and back to Walgreens...then sat in the parking lot on the phone with insurance arguing the cost of the accutane ($8 vs. $354.00)-- apparently the BRAND name is REALLY expensive and I have only been charged for generic in NY but always given the BRAND name! Any other time I would not care about generic but size matters this time--- Grier is 3-- he swallows 3 pills a day the size of a jelly belly-- the generic version is larger-- the size of a Mike and Ike or a Hot Tamale! So I am trying to reason with them and they really do not care-- So-- I end up eating the difference and telling the woman I will appeal it! I have gotten good at doing that-- :) Again it was one of those times-- I thought.. Did she just hear me say my 3 year takes this for a cancer treatment--???
AM I making you tired yet?????
I am sure a lot of you had this same day (maybe with or w/o the medical drama!)-- I did think a few times that May is like December--- it is hard to slow down and enjoy the end of school when there is so much that has to be done--- And since cloning is not an option --- I guess we all continue to do it !

We should hear from MSKCC by Tuesday night--- I will call them on Wednesday morning just to be sure --- I am assuming if he is HAMA negative-- we will head to NYC on June 8th ( yes-- his 4th birthday) and be there for a week of 3F8-- Of course -- All of this is based on his HAMA test result--

That is it for now-- Thanks to all that bought a GGG T-shirt--- And to Kerri for organizing all of it--- A teacher had one on at school today and some of the kids said... "I have that sticker on my car!" I also forgot to thank Leslie Ford for printing tattoos--- that say Go Grier Go-- I have seen lots of kids with them on! Awareness is the only thing going to change the outcome of Neuroblastoma--- !

FYI--- if you have not heard yet about this news that will also bring more awareness -

September 13, 2008 will now be recognized as 'National Childhood Cancer Awareness Day' as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

Thursday, May 22, 2008

Happy 'early' Birthday to me!

Grier had his birthday celebration at school today!! As you can tell from the pictures, he LOVED it!! I just wish I had my video camera!!
Sorry for the short update--- but I really have no news to report!

Tuesday, May 20, 2008

Not much to update--- Everything is going great around here---
We are enjoying the busy time the end of school brings--- I forgot how much we missed last year!! Grier is about to turn 4 on June 8th--- !!! It is very hard to believe!! I still look at him and see a 2 1/2 year old sometimes!! Maybe it is his size!!! Maybe it is the fact he is not potty-trained-- who knows--- But I have a lot of work to do this summer!!

He will have another HAMA test done on the 29th-- We are in the 4th cycle of accutane-- not looking forward to the usual side effects that it brings but we will get through it--

That is it for now---Thanks for checking in!!

Saturday, May 10, 2008

We have survived a nice week at home-- busy but very NORMAL!

Our whole house has had allergy issues but that has gotten better so we are so glad to be on the mend-

Grier ( and I ) went to school for two days-- He is gradually getting adjusted-- His teachers are the best and I hope that I can sneak out for at least half a day before summer break!! I have tried to bribe him but it is not working-- he did tell me that Grace could stay with him instead of me-- But I quickly reminded him that she goes to her school!

If you have a second --- check out this blog... Charlotte Smarty Pants www.charlottesmartypants.com -- It is fun to read and I have learned quite a few tricks from it lately-- You will see a picture of me and the kids today-- The picture has a long story behind it-- but the short version is that Hayes was having a "tween" moment! I also answered lots of questions and hope that I raised some awareness for Neuroblastoma and pediatric cancer-- and I answered some fun questions too!

Tomorrow is Mother's Day and I wish all of you a great one-- Our NY social worker told me that everything happens for a reason so enjoy Mother's Day in Charlotte -- maybe I should write a book with her little email comments-- ! Don't worry Diane -- we will enjoy the day and actually everyday while we are at home!!

Wednesday, May 7, 2008

Just when you think you know what is going on with the new routine!

"There is nothing easy about any aspect of battling this disease.
As parents you have so much responsibility and so little control!"

Yesterday was one of those long days---I was busy making a RMDH reservation and talking with Corporate Angels--When I emailed our social worker in NY about a reservation at the Ronald-- she asked if we were coming for anything else other than 3F8-- I said no-- and asked her if she knew anything about his HAMA test yet-- She said it will be late Tuesday-- I replied saying Tuesdays are long when you are waiting for them to call-- And she said" There is nothing easy about any aspect of battling this disease. As parents you have so much responsibility and so little control! So I just continued to go about my day trying to let go of the control I wanted!

We were waiting for a call from Sloan and hoping not to get a call at the same time!! I know-- does not make sense! But we have always been told no news is good news with HAMA-- if you do not get a call then you are negative-- but they will call if he is positive because you do not need to do the shots-- The "call" comes late-- and most NB parents will tell you you can assume after 6:30 you are negative with no call! So... we left about 6:30-- went to dinner and to watch a Charlotte Christian baseball game--- I checked my messages a few times while I was gone and there was nothing-- I figured he was negative-- BUT wanted to make sure-- so I emailed our NP this morning and she said-- NO-- do not start shots-- we were going to get a call this morning-- Grier is HAMA positive again-- He will be retested in 4 weeks-- He will continue on accutane-- he has 3 more cycles left- So, another lesson in the NB world-- do not ASSUME anything-- !

Now-- I am going to cancel the reservation and flight-- take a deep breath... and change gears a bit because we will be in Charlotte next week and not in NYC!

Monday, May 5, 2008

THANKS!

In about a month you should start spotting Go Grier Go T-shirts everywhere! Although the response wasn’t what I expected, we did sell a total of 201 shirts -- Over $1,600 profit going directly to the Christenbury family. Grier’s battle to keep his body free from Neuroblastoma is ongoing, and the frequent travels to New York are costly. The Christenbury’s are grateful for your continued support. If you ordered shirts, I will contact you when they arrive.
Thanks,

Kerri Norwood

Thursday, May 1, 2008

Today we went to our Charlotte Clinic!! Grier did amazingly well with accessing his port--- he screamed for a brief second and our Nurse (Jennifer) was so fast it was over before he knew it-! His counts looked good and Dr. McMahon ( or as Grier says.. 'what man?) seemed to think he looked good too-- He has 3 more days of accutane so some of his skin issues should clear up soon- After the appointment we went to Kinko's to Fedex his blood for the HAMA test--- It will be in NYC tomorrow morning-- And hopefully it will be HAMA negative! We will know by Tuesday night-

We have not been at preschool this week but if all goes well he will go tomorrow--- ! He has had a little cold for the past few days and they have had a virus in the school so we are being careful- I am trying to not be so careful that I kept him in a bubble---

That is it for now--- prayers are needed for all the families dealing with cancer-- and there are lots!

Monday, April 28, 2008

T-Shirt deadline extended, Plus new payment option!

If you have placed an order for ‘Go Grier Go’ t-shirts, you should have received a confirmation email today. If you did not receive your confirmation, please notify me ASAP at Rnorwood@comporium.net

The deadline for ordering t-shirts has been extended to May 5th! Just to make it easier, you can email your order form and pay directly into a paypal account. You will receive a confirmation email when your order form is received.

Email address to send order form: Rnorwood@comporium.net
Paypal account to send payment: Rnorwood@comporium.net





You may also continue to mail your order form and payment to:
Kerri Norwood
4501 Landmark Drive
Rock Hill, SC 29732

Thanks for supporting the Christenbury family!
Kerri

Saturday, April 26, 2008

One week at home!

We have survived a busy week at home with NO doctor's appointments---! We were very busy with baseball and soccer games last weekend and more to come this weekend--

The most exciting news of the week is that Grier went back to First Pres Preschool!!! We have been visiting for a couple of weeks on the playground but not on a regular basis due to our NY schedule. Since we have a three week break in between the next NY visit this time-- I decided it was time to try-- It has gone OK--- Grier is very excited to go as long as I do not leave--!! On Tuesday he had a short visit on the playground and on Thursday and Friday we went from start to finish and had a fun time playing in the classroom and going outside and then finishing with lunch! The kids and teachers were great-- welcoming both of us!! He did great and I tried to leave the room once but it was short lived--- but I will keep trying-- With the year he had I have to keep reminding myself that he will take longer to adjust to his peers and this new schedule without me-- So, we will press on trying to get him adjusted to a school routine again-- hopefully before summer comes! I know that I could not have asked for a better program for him to be in-- wonderful teachers, directors and families-- Thanks for welcoming us back!

He is almost half-way done with this cycle of accutane!! You can already see the skin starting to peel and break-down and of course the mood swings are in full force-- I am trying to get Hayes and Grace to give him a break but they do not understand-- It is sibling rivalry in full force at our house!

Our next appointment will be on Thursday-- he will get his port accessed and they will draw blood for the HAMA test-- I am praying he is HAMA negative one more time-- so we can get four rounds of 3F8- I do not talk about percentages a lot but they say at least 4 rounds -- with 6-8 being better so that their body can learn to fight of NB on its own-- we will not know until late Tuesday, May 6th-

That is it for now-- check the reminder from Kerri about T's--

Wednesday, April 23, 2008

T-Shirts

Don’t miss the deadline!
Less than one week left to purchase your “Go Grier Go” t-shirt. All proceeds will go to the Go Grier Go fund to help defray medical costs, with a portion going to www.Bandofparents.org, an organization founded to help raise funds for neuroblastoma research. Show your support for Grier and the entire Christenbury family by wearing your t-shirt on Fridays. T-shirts will NOT be available for purchase once the deadline is over. If you have questions, contact Kerri Norwood at Rnorwood@comporium.net

Go Grier Go magnets are still available for $10 each. Contact Trisha Riesmeyer at eriesmey@bellsouth.net

Let’s continue to rally for Grier in his attempt to ‘STRIKE OUT NEUROBLASTOMA’!

Tuesday, April 22, 2008

CBS news footage at the Ronald

CBS early show footage on a RMDH house family -- Morgan has NB-

Saturday, April 19, 2008

peaceful, quiet... charlotte!

We made it home today!! Thanks to Corporate Angels for an uneventful flight--
Grier is doing fine-- his eating has picked up and I do not see any signs of withdrawal from dilaudid yet-- We are having one issue--- all of a sudden he is having a reaction ( welt-like) to the shots he was given last week-- I saw one this morning at the airport-- and then after baseball 3 more showed up on the other leg-- weird-- I hope the benadryl stops the itching and makes the swelling go down-- Always something--
We made it to Hayes' game and I am glad since he hit a home run (out of the park!!) Go Steel Fab!-- We ended up staying around the field some extra time since it was so peaceful to be outside-- even the walk back to my house was quiet with only sounds from the birds!! I was so glad not to hear honking!!

Looks like our week will be pretty normal-- We will start accutane on Monday-- and get our HAMA test done MAY 1st--- I was told there is a good possibility that it will positive again-- but we will worry about that later-- We are scheduled for round 4 on May 12th if he is HAMA negative-

Thanks for all the prayers and good wishes this week-- Hopefully my updates will be weekly for awhile with no news to report-- We are going to try to get back to school soon-- he keeps asking and I think he is ready-- I will post some pictures soon if that happens--

Go, Grier, Go!! and all those other kids fighting this fight!!

Friday, April 18, 2008

DONE with Round 3

I do love Fridays of 3F8 week--- when we finish a week of treatment you feel so good-- Grier had pain today and was able to do his breathing exercises ( like Lamaze!!) during most of it-- he did have his 2 rescues of Dilaudid and it seemed to take the edge off--- Monday was the longest and most intense and then the rest of the week seemed to be the same everyday--- I am glad we did not have any surprises with blood pressure and O2 levels-- We also had a great roommate-- They called our room "The Southerners!"-- which is fine with me because it made time go by faster as we waited for the boys to wake up-- He is around Grier's age ( 6 months younger) and lives in Charlotte too-- we had a favorite nurse in common-- Dawn!! He does not go to CMC but had her with home health--

The general consensus from the team is that he looks good--- and he does -- I can not wait for him to get back home and start feeling good again-- This week takes a lot out of him! We will have to watch for withdrawal symptoms from Dilaudid-- His body is so used to having it for a week-- it can have symptoms...like fever, sweats, chills, mood swings when we stop cold turkey-- NICE huh?

So-- now it is time to pack and get ready to board our corporate angel flight early tomorrow morning-- We will be leaving extra early to avoid all the "POPE" traffic. He is in our "hood" today and tomorrow!!--- Hopefully nothing will stop us from getting there-- not even the POPE!!! We should be home in time for Opening Day Ceremonies for Dilworth--- and then we will get to see Steel-Fab play some baseball-- Somehow we lucked out not missing Grace's game again--- she does not play until Sunday!!

Wednesday, April 16, 2008

Here is a video of Joba (Yankees Pitcher) visiting the day hospital last December--- You can see Grier is a few shots--

Grier finished his 3rd day of antibody treatment--- nothing really different --- pain was intense for awhile with his heart rate going up to 183 today--- Some may find this weird but we want to see some pain-- because it is very common with HAMA to have no pain at all and that means you probably HAMA'd again--- So far-- there has been a lot of pain--

He is still sleeping--AHHH! This round has really screwed up his sleeping pattern--- He finally woke up last night around 9pm and was ready to talk and play-- He ended up back asleep by midnight-- and woke up early.... 6:45am! Hopefully by Friday, we will get closer to a normal sleeping schedule again--

NYC weather has been great-- we have not had to wear jackets and it makes walking around so much nicer--- I wish he felt a little better so we could go somewhere besides MSKCC!!

2 more days to go-- :)

Tuesday, April 15, 2008

3 more days-

Day 2 is over--- He did well--- his pain was more intense but did not last as long-- He is still sleeping-- we did go out for a brief walk to blockbuster-- but he slept the whole time-- It is really wiping him out this time--

We met the researcher responsible for 3F8 (Dr.Cheung)-- It was interesting to met him-- we have always heard about him-- He told us promising things about this therapy--- I hope he continues to work on new developments-- he seems to have a passion for finding a cure for NB!

Looking forward to the morning-- Grier will lively again and ready to go back for day 3!

Monday, April 14, 2008

Day one-- of 3F8 Round #3

I keep reminding myself that the first day of this treatment is the same--- and it is for the most part--- It is a long wait to get started and cleared by the team-- by the time the infusion is done you feel like you have been run over by a truck--- And I am not in pain-- just watching Grier and helping him cope does it to us!! We had a pretty normal day-- we did NOT have any breathing issues which is always a plus--- and we had a great group of nurses ( Lea, Latisha, Casey, and our NP- Ursula) helping us--we have some favorites now and it nice to see them when we return each time!! I wish we were at home so I could get some treats delivered to them like we used to do at CMC!!!

Grier perked up a bit around 7:30--- he wanted to go to the pizza place for a slice--- we strolled over because his legs were hurting and then came back-- He has a little puffiness in his face but other than that he is comfortable- I hope he stays like that all night!

Tomorrow will be much of the same-- but hopefully we will be back in the room at the RMDH earlier-- but you never know--- Historically, hives happen a lot on Tuesdays so we will see how he does--

Our plan is to come home Saturday early morning-- I am looking forward to leaving NY--Springtime makes it harder to be here because there is so much I am missing at home this time of year!! AHHH-- 5 mores days of NY living-!

ps-- There are some kids here at the Ronald that will be on the news a lot this week--- One is going to meet with the Pope at a special healing mass when he visits NY this week--- and the other will be on THE CBS EARLY show on Thursday am--- Both have NB --- So hopefully the news coverage will help with awareness--

Sunday, April 13, 2008

We made it to NY-- Thanks to corporate angel network--- we flew here with 2 other families from Charlotte both fighting NB as well--- We arrived at the RMDH and unpacked-- and hung out at the house--- while on the elevator-- we met another family from Charlotte with the same story!! I am telling you this because that is 4 families dealing with a RARE aggressive cancer --all displaced from their homes to another hospital in another state!! Hmmmm!!

We went to dinner at Grier's favorite spot for creamed corn--- The waitresses greeted us like family-- it was very funny-- We have gone there a lot lately and they love to talk to Grier--

I will start my countdown of the days left until we fly back home tomorrow--- :)

ps-- We met Tom Lehman at the airport today--- Jeff talked Golf with him and he asked us a lot of questions about NB--- cool huh? He will be in Charlotte for the Wachovia Golf Tournament ---

Saturday, April 12, 2008

Go PAT Go!! Still smiling at mile 11!!!

Spring Break.. Tests results..schedule.. Fundraiser.. and other tidbits!

It has been awhile since I updated--- We ended up taking a last minute trip to Myrtle Beach with two other families for spring break-- The 3 moms and 8 kids went for a few days!! Since we did not know our plans about NYC until we got home last Friday... this trip was thrown together in days-- And I can say we all had fun--- I am getting used to just dropping everything and leaving-- no more planning!! Who needs a calendar? Ha!Ha!

We did get a call from MSKCC on Friday about Grier's tests--- and there was no NB! We started his shots last Wednesday to increase his white blood count to prepare for 3F8 again--- He will begin that on Monday the 14th-- Monday is always the hardest and longest day-- lots of waiting to see the team to get cleared for 3F8 and then lots of poking with needles!! So say some extra prayers around 9am- It will be a late return to the Ronald... we will most likely let him sleep off the pain killers at the day hospital-- We leave tomorrow morning and will return Saturday- Hopefully HAMA will not come back during treatment this week-- and will stay away so we can get a few more rounds of 3F8 in--

I need to mention the GGG T-shirts-- I have some great friends and they are always thinking about how we can raise awareness for Neuroblastoma and help defray the travel costs to NYC for our family-- I am not going to tell you it is cheap to live two lives-- because it is not-- but we are doing it with a lot of help like the GGG concert and magnets and T-s--!! So... Thanks everyone!!

Grier looks for the magnets on the cars when we are around town--- and he is getting good at spotting them before anyone else in the car--- So many people liked the design and asked for T-s so that was another idea that came about because of all of you-- Order forms are on the www.gogriergo.com homepage--- You might need to hit refresh!! If you have any questions you can email Kerri Norwood-- rnorwood@comporium.net These are pre-order only and there is a deadline--- not sure what it is off the top of my head!
This is one of many things people have thought of from concerts to knitting and a lot in between---

Did anyone see Pat run her half-marathon today??? I missed it-- Grace had a soccer game--- but would love to see pictures !! Way to go Pat!

That is it for now-- I am going to pack the suitcase again-- :) I will update from NYC this week--

Friday, April 4, 2008

Some GOOD NEWS!!

Well-- My anxiety level has come down quite a bit since the phone call from MSKCC--- His MIBG and CT "look good"--- now we wait on Bone Marrow and Urine---
Thanks for all those thoughts and prayers this week--- I am not sure why but this scan time was much harder to be calm through!! I am so glad it is over--- sleeping will be much easier!!

We will enjoy a spring break together--- since last year we were at CMC!!
We will be back in NYC on the 13th for round 3 of 3F8--

We are able to "breathe" a little for the next 3 months!

Thursday, April 3, 2008

no news yet--

Scans are done--- and now we are just waiting for results!!! The hardest part of the whole thing!
We are coming home tomorrow morning--
Other than that nothing else to report--

Wednesday, April 2, 2008

One more day of scans to go--

Today is going much better--- We got to MSKCC at (7!!... why I am still not sure) since we did not really do anything until 8:20! Oh well- Grier did fine as usual.. pushing the white medicine and then waking up for a brief second after they were done-- he fell back asleep and had a really good nap-- And he is in a pretty good mood today--

We stayed in our room while he went "commando" so we could collect urine for 4 hours!! FUN!!!
After that he went to the playroom for awhile--- and now he is back and ready to go to dinner---

He has done really well taking this NASTY medicine--- it is 7 drops of "iodine" to protect his thyroid from the MIBG injection---They are extremely bitter--- but has gotten them down for 2 days and we have one dose left--- his new trick is to suck on a lollipop before and after!! Tomorrow he will have to drink the contrast for the CT --- AHHH-- so many things to get done just to get scanned!!

And the final news of the day is that he is HAMA negative--- meaning he will do 3F8 again starting Monday, April 14th--- we need to be back in NYC on the 13th-- assuming all these scan results are OK-

So-- we are busy trying to find a flight home--- Corporate Angel has nothing right now so we must again book a last second flight on USAirways--- Oh well--- at least we will be home for the weekend--

Tuesday, April 1, 2008

Today went as well as can be expected--- we did our usual wait at MSKCC-- accessing his port was horrible--- he was screaming the whole time-- and the MIBG injection went off perfectly ( almost on-time)-- Grier actually slept through the injection-

The rest of the day was low- key--- he fell asleep at Lenny's--- he is really tired due to all the tantrums today and the lack of good sleep last night... (our neighbors were up until 1am!!!--- having a great time!---AHHHH!)

Tomorrow we will go at 7am for anesthesia for the MIBG scan--- Then we will come back and be under room arrest while we collect a urine sample for 4 hours---

Hopefully, he will be in a better mood --- it is exhausting negotiating EVERYTHING with him---

We did not get a call tonight about the HAMA test--- so I will ask first thing tomorrow morning--

Monday, March 31, 2008

We made it---!

We arrived at the Ronald around 7:30pm--- not too bad!!! We had a weather delay in Charlotte because of fog in LGA-- but at least we made it tonight-- lots of flights were getting cancelled--  So, a few hours late is not that bad-

We had  a quick dinner at Southern Hospitality and then walked back to the RMDH--  The weather is so nice---- a warm 50 degrees!!!  We are not in room 807--- so I hope this new room does not have any special noises in the early morning---  We just have loud neighbors!!

Tomorrow will be a low key day--- We will go to the clinic and have him accessed (YUCK!!) so they can inject the MIBG radioactive dye--- And that is it for the day--  There were some NY Yankee tickets available for tomorrow--I am trying to talk Jeff into going-- the only problem is there are 2---!!  

Until tomorrow-- 

Sunday, March 30, 2008

Here we go again!

We will leave for NYC on Monday...(TOMORROW!!!) I can not believe it-- YES -- I have been home awhile but I think that makes it harder to get back into the NB fight mode!!
We have had several corporate angel flights cancelled this time so we just booked a USAIR flight--- !! I was going to go crazy with all those phone calls this week regarding changing flights-- so we decided to book a flight instead of waiting to see what happens at the beginning of the week--

The good news is that we will finish accutane tonight--- YEAH--!! His mood swings have been trying and we basically walked on egg shells last week!! His skin was much better this time--- we used SWEEN creme ( a tip from Marett's friend) and it seemed to help--- LIPS are the hardest to keep from cracking especially when the wind and cold came a few days ago!! He will have 14 days off -- and then back on again for the 3rd cycle-- There are 6 in total-


He will have an MIBG injection on Tuesday -- then a MIBG scan on Wednesday-- And Thursday he will have a CT and Bone Marrow tests-- I hope to be home by Friday-- but if the HAMA tests says he can get another round of 3F8 then we will stay next week!!!

I guess the next update will be from the Ronald--- maybe the weather will be warmer than here???

Thursday, March 27, 2008

1 Year~~~ we made it with the help from so many!

This is the day last year that changed our lives forever-~ I have thought about this anniversary a lot lately. I have written this entry a million times in my head-- I did not know whether it would bring a sense of sadness and fear or a sense of hope and joy— And I can say it has done all of the above--- I have found myself in quiet moments re-living moments of last March 27th-- The hospitalists tone when he so abruptly told me what was wrong with Grier. The phone call I made to a friend trying to speak when I could not. The text message I sent to a friend that said NEUROBLASTOMA (not knowing exactly what that was)~ The many faces of family and friends that I saw at 11pm at CMC… and for days and weeks after the 27th. The first meeting with Dr. Longee and the hope that he gave us. The shock. The disbelief. The tulips. The visits with friends and family. The blue Go Grier Go bracelets. The army of people that took care of our family during the early days. The wonderful 7T nurses and staff. The emails and cards. Susan our recovery room nurse. Pat Taft. The singing at his bedside of Razz Ma Tazz right after one of the many early procedures by Mrs. Leary. And I could go on and on … But there are many things I do not remember and the blog has been my saving grace!
The blog has helped me stay in contact with friends and family without spending hours answering phone calls and emails—But I must admit it makes me very tired to read the early entries – I can not believe Grier went through so much as well as the rest of our family, especially the supersibs—It also gave us strength from the entries from Grier’s team… there were some that would write everyday and still do!!
I can happily say we made it with the help of family and friends and our faith—WE MADE IT! Grier did far better than expected and in some ways carried us through this-- We are now living WITH cancer and still live day by day—I know some will find that odd but it is the way we have survived for so long—
I am reminded everyday (yes, I read caringbridge sites too, and I am a lurker!!) that we are not the only family living this way-- we have met some wonderful people from all over with their own pediatric cancer story and they are just as strong and courageous as Grier and our family—I remember going to the clinic for the first time and meeting Julia… she was dressed up in a princess outfit with a grin on her face—the nurses and staff were welcoming to all that entered and I was numb—but gaining strength watching the veterans of the clinic—and now I can say we are a veteran of not only our Charlotte Clinic but MSKCC as well-- WE MADE IT! We made it through a 10-hour surgery (with a huge sense of peace around noon that day). We made it through so many ups and downs. We made it through the first “buzz” cut and later the first sight of him bald. We made it through 7 rounds of chemo- We made it through so many scans. We made it through countless pokes and injections. We made it through 14 radiation treatments. We made it through 2 cycles of 3F8. We made it through the unknown. We took all of this and made it our new normal— We do not take any of this for granted… We know of far too many kids that did not make it this past year—They “lost/won?” their battle with cancer and became ^Angels^. Pediatric Cancer research is still lacking appropriate funding—we need to do more so these brave kids that fight everyday can just be normal kids – and a cure can be found so no family has to have an anniversary of a diagnoses!
I wish I could say we are done… but we are far from it- We still need a cure! Or the very least a treatment that is not so toxic to the kids.
Each set of 3-month scans brings back a lot of uneasiness and fear that the scans will find more NB in his little body. And if they do… we will make it again and start all over knowing we have wonderful friends, family and strangers that are supporting us everyday as we battle the beast called Neuroblastoma—(I know what it is now!!!)
Thank you again for all that has been done for our family this past year… meals, rides, donations, organizing help, wearing a Go Grier Go Bracelet, Putting a magnet on your car, prayers and good wishes, phone calls, visits, gift cards, flowers, TOYS, hats, cards, and the list could go on—
This day will be marked in our lives forever… but so will all the acts of kindness given to The Christenburys— THANK YOU! THANK YOU! THANK YOU!
GO GRIER GO--!!

Sunday, March 23, 2008

Happy Easter!

Wednesday, March 19, 2008

A picture is worth a 1000 words!!!

Friday, March 14, 2008

We are still living our new "Normal"

I can not believe it has been TEN days since the last time I updated this blog!!! We have had a very normal past ten days at home with a few breaks for me--- the beach and a wonderful visit with a friend and her family- I was lucky enough to be there when she had her second baby-- Some days I look at Grier and forget that he has NB-- it is easy to do these days since treatment has stopped for awhile-- I am thankful for these days-- but hope that his HAMA goes away so we can get 2 more rounds of 3F8 -- A total of 4 has better odds so that would be great-

Grier is doing well-- the 14 days off of accutane have been great... he will start that again on Monday--- so we will once again deal with mood swings and DRY skin!!!!!-- We did find out that we will be in NYC April 1-3 for scans-- As you all can imagine, scan times make us nervous but it something we have to do-

The most exciting news today was that Grier made a visit to preschool--- he went and played on the playground with Mrs. Leary's class at First Pres! He was VERY timid at first but warmed up quickly to all 3 teachers!!! He later warmed up to some of the kids on the playground-- By the end of the visit he had let go of my finger and was sliding down the slide... and driving a truck-- It made my day to see this happen-- He told the teachers he wanted to come back and play so I plan to do that as time allows- It is my hope that we ease back into school before the end of the year-- obviously waiting for results of the April scan before we make the full transition-