Hurry up and wait....

All tests are back and no signs of the nasty NB beast was found... I wish I could say I took I deep breath and exhaled but this time has been very different. Last week when I found out he might have to do high dose chemotherapy again really threw me... It was as bad as the day I heard he had to do ICE last May. Now, we are once again waiting for them to decide what to do... Heard that before... Crap, I think I have heard that for the last 6 months--while we have been chasing out own tail stalling with lose dose chemotherapy! So.. We wait.. I should be good at it but I am not...

Grier finally seems to be feeling better... He missed school last Friday because he woke up with one of his headaches... He had not had much to drink or eat the day before and the coughing was non-stop at times. He took a cough medicine with codeine and I thought the good nights sleep he had on Thursday would have been the best medicine. The Friday morning headache was bad.. The worst part was he knew his class was going to the circus and you could see him tying to get ready and go to school...about the time it was time to head out of the door he got sick... His head was really hurting so no school... He fell asleep after he got sick and about an hour later he woke up and said.. Are all my field trips to the circus? I had to break it to him and say no... And he said I always miss the fun things. About 10 minutes later he asked to eat.. Looked 100% better and said do you think I can go to school now? I told him the kids were already on the bus. He said, can you take me and we can find my friends? So.. The crazy mom that am said sure.. And we headed to the circus... I was actually suppose to chaperone and I had to find someone to do it for me... Thanks susan! Grier and I got into the circus with no ticket and found their class :) He enjoyed it... Took a nap after we got home and I am glad he did not miss it-

So the waiting continues... This week has no clinic appointments that I know of.. But we are finally going to see the eye doctor..the message from the office said to be prepared for a 2 hour appt.-- hmmm.. I hope NOT..! Wish us luck and hope that the school eye test he failed was a fluke :) I have got to get to DMV sometime soon... And get the maintenance required light taken care of in my car....I was wishing for normal and you can't get anymore normal than that!

close to home

***I haven't said this in a long time... and basically have written a censored version of GGG for awhile. Facebook has more "real" posts.  This blog is not to be read to children. A lot of the things I may write are things my kids may or may not know-- and I don't want them to be told by other kids-  I tell them things in an age appropriate way ... and when the time is right.  Sorry for the disclaimer but some need a reminder.  Please use your filter... don't ask me questions about Grier in front of Grier or the other kids.  ****


After the last blog update I had full intentions to write about the fish bowl feel at the RMDH house last week during the BIG meeting of execs ... the TSA craziness at LGA, the 101 things that people say to me that make me nuts, the lack of attention pediatric cancer gets in the local newspaper, or the story of the rude woman that threw a pen at Lesa and I when we picked up a check... but it all seems a little stupid now.

Grier's test are trickling back in... so far he has clean scans.  The only test that is not back is his urine test. He ended up missing school on Tuesday because he had a fever just under the "magic number" for a hospital admission Monday night.  I took him to see Dr. McMahon on Tuesday to check on him.. he ended up getting a chest xray to make sure the cough was "just a cough" and that the antibiotics he was on for his ear infection wasn't masking anything else.  His ears were better.. chest xray was fine- so we went home... 
The next step is the BIG ? these days... Today I got an email that our Dr. wanted Grier to do a HIGH DOSE round of chemo next week- I freaked... seriously??? I was so confused... and did not know how I would tell Grier that he was going to feel like shit again, lose his hair, and miss a lot of school.  Turns out that is NOT the plan now.  I told a friend I felt like I won the lottery when I got that email.  But we don't have a plan... the vaccine that we have been waiting for has no more slots open.  So, we wait... 

On Monday, the NB world received some devastating news.  Liam Witt, son of Gretchen and Larry Witt and Big Brother to Ella lost his 4 year battle with Neuroblastoma at the age of 6 1/2- This news of a child losing their battle is not new... honestly there is not a week that goes by that I don't read about someone.  But Liam's news hit close to home.  He just had scans last week. His scans were not good.. or as his mom posted on FB “I can’t talk. The scans were awful. His disease is now at the point where it’s laughing at chemo. This is not good. I’m laying in bed with Liam who just wants to be “snuggle bunnies” together…and that’s all I want to do…snuggle with him and keep him comfortable. To say my heart is breaking, no shattering, would be a gross understatement. It is imploding in sorrow. It feels like I’m being gored alive. I need more time with him to love him and be loved by him. He is pure love and life and joy and kindness and strength. Why? And how can that be taken away from me?”  Liam had beat this many times before so that is why it was so shocking.  Liam was the inspiration for Cookies For Kids Cancer that his parents worked tirelessly on at the same time providing him with the best care possible.  He had had cancer for more 3/4 of his life but when you met him that is not what you noticed first.  He had a great smile, a love of learning, and was very caring. He loved Jack Johnson, the color orange, his orange scooter and his ipod and ipad.  He knew everyone at MSKCC and I am sure they are missing him right now. Last May when we saw them.. we hung out with him in a different building and he made a "poster"-- he pulled out his markers and asked me to write "cookies for kids cancer bake sale"-- he drew the cookies.... when he was done he walked desk to desk in this hospital office building and asked for tape.  I had no idea what he was going to do-- but as soon as he talked someone into giving him tape he proceeded to tape his bake sale sign on the door!  All the security guards just watched him but never said a word!  This was not an easy task because he was pushing his "shopping cart" that held the HUGE backpack full of fluids that he was getting because he had just had chemo that day. That was the same day he taught me how to get a cab... long story but he gave me some advice and tricks.. and I can now say I know how to hail a cab and it does not take me FOREVER!  That was also the same NYC trip that Grier relapsed for the 2nd time.  His mom was so helpful to me as I waved the post-it note in Liam's room with the chemo regimen that Grier was going to have to have...I could not even get the word out of my mouth.  It had three letters on it... I C E- She came out and told me it would be OK-- She reassured me -- Liam's kindness was something he learned from his mom. She and everyone that knew him is heartbroken. She is encouraging everyone to continue the fight ... she does not want Liam's fight to be in vain.  She wants people to be a good cookie.. stop ignoring pediatric cancer, and have a bake sale or donate money to cookies for kids cancer.  She said if they had 10 million dollars that could have granted all the grants that applied for this year alone. That is the goal --10 million this year. He would have turned 7 in May and the goal is to have 700 bake sales around the country take place.  There really is nothing easier than throwing a bake sale-- you could even have a virtual bake sale and make you own online fundraising page. I think Liam will make this happen. 


Liam's celebration of life will be on Valentine's Day.  We were planning on doing the HOPE, LOVE, & ICE CREAM fundraiser again on Valentine's Day at Ben & Jerry's.  This year it will be in Liam's honor.  The Woodlawn, Myers Park, and Fairview Ben & Jerry's will donate a portion of their sales on Valentine's Day from 12-9p to CFKC . They will have the cute conversation heart cakes like they had last year.  Share with your friends--- make it a fun family treat.
The one piece of good news this week was an email about our Dec.4th Bake Sale from Bank of America... here is part of it...I know the original goal was for Bank of America to provide a grant in the amount raised, but we would like to provide $50,000 to support the organization’s work and celebrate the accomplishments of the local group. So, instead of the $35,000 they are giving Cookies For Kids Cancer $50,000-- WOW- is all I can say. Imagine if it was that easy to get everyone to care- This brings our Dec. 4th bake Sale total to almost $90,000---thanks again to everyone that helped with the Charlotte, NC bake sale- 

My favorite picture of Liam-

In lieu of flowers, we request you honor Liam’s love and life by making a donation to the organization he inspired us to create, Cookies for Kids’ Cancer, through a special online giving page we have set up in his honor -http://cookiesforkidscancer.kintera.org/iloveprinceliam. 

Fell asleep during the first 1/2 of the MIBG

MOM, look outside... another BLIZZARD!~Grier

The Lifesaver when we have a lot of waiting!

Trying out wii JUST DANCE in between football games

We made it home late Friday night...Friday was good.. Grier did well staying still for the MIBG scan-- he actually fell asleep as he listened to his iPod and was covered up in the warm blanket! There is nothing better than a warm hospital blanket! Grier always asks me if we can get one of those warmers for our house. He was sleeping soundly and the tech went and asked the radiologist is they wanted a spec CT.. A more detailed look.. And she pulls up the scan and says yes.. We have gotten these before and I was actually planning on it this time... I had even asked to have Grier's scan in room 1--t is the only room with a spec CT scanner...anyway we weren't in room 1 so I had to wake Grier up and we switched rooms with another child and started the second part of the MIBG--40more mins and this time he did not fall asleep. At the end of the forty mins.. Grier was asking how many more minutes and i was doing everything to stall-- and I look over to the glass room where the techs are and see 3 people in white coats.. Pointing at the screen and I felt the color rush out of my face.. I sat down -- after a minute I asked the tech who they were and she said oh, just scientists! Don't worry-- right.. Easy for her to say... We were done and got our standard good luck from everyone as we walked out of nuclear medicine and headed up to the 9th floor. Grier was chatty and I was still recovering from the moment..we had to wait for his bone marrow aspirations in the procedure room. During our wait we chatted we the Kings from Indiana, Ursula came out and we saw her.. And the first question I asked was about the 3 folks in the MIBG room.. Then we saw Rachel, a nurse who has taken care of Grier since we started coming to MSKCC in 2007-- she used to be in the room when Grier had anesthesia so I asked her if she has seen the scientists before and she said yes...I was feeling a little better..
Grier finally got called back to the procedure room.. I picked him up and put him on the table and he was ready to push his white medicine! He shut his eyes quickly and I left the room and waited. The doctor came over to me as I waited and said he did fine.. And said the MIBG looks fine and nothing jumps out at him but it was not the final report --his CT still was not ready yet.. He said depending on the tests we will have to do something.. Most likely an escalated dose of 3f8-- the vaccine has enough participants in the trial and it is closed at this time.
I continued to wait in the tiny waiting area.. Talked to a Dad that I met. He was from South Africa-- he and his son were here for scans too-- they had been making the trip to MSKCC since 2006-- wow! And I complain about my travel time.... Grier is famous for napping after anesthesia.. They usually let him sleep.. I was waiting a while.. At one time Rachel came out and asked what time our flight was! He finally woke up and we headed out of the hospital. We did not even make it to the elevator before his groggy voice asked if he could take his hospital bracelet off!
We had a quick lunch.. Cleaned the room, packed our rent a box-- and even had time for a quick ping pong game in the playroom... Our car picked us up @ 5-- we headed to LGA and started the process of going home. We landed in Charlotte at 10-- a little delay due to weather... But we slept in our bed and not at LGA!
The rest of the weekend was like normal.. Hard to believe we were in NYC for three days.. Reentry is always hard for me.. Grier is good at it..
Hopefully we will know this week how everything looks on his pictures... The waiting is the longest part...
Our friend, Adam got good news.. as well as Brice, Kate, and Kieran- I am still in shock and numb with Liam's latest news... His family has been such an inspiration to many and brought awareness to this awful disease and it is so unfair that they are dealing with this-- the scary part is we are all one scan away from it.. So much more needs to be done.. More companies need to be involved like GLAD..money needs to go to research and families fighting for their children need to concentrate on them.. It is too much to have to raise money for a cure and fight for your child -- more people need to decide kids are a priority ... It is time to change...just like the world changed when it was cool to be "pink"-

Another L O N G day.... lots of waiting for 2 procedures that took all of 20 minutes!!! Our day started later... we did not have to be at the hospital until 11:30-- Grier woke up at 7 and started asking when he could eat something!  I knew these four hours were going to be FUN.  We slowly got ready... did some scratch off lottery cards... and got all our items ready for the day.  As soon as we got to clinic he was allowed to start drinking his CT contrast... not a problem.. before I knew it he had finished the entire cup! He did an amazing job getting accessed -- he has a difficult port... it is tilted a little and they had to adjust it after the needle was in... he stayed still and handle that like a champ.... We waited in the playroom for them to call us back... it was a long time... but it passed quickly because I was chatting with other moms I had not seen for a few months... and playing "horse" with Grier.  They finally called us around 1 to get his check up by the team... "he looks great" is the first thing I was told by one of our docs... :) I told him I wanted him to say that to me tomorrow when I see him in the procedure room to do Grier's bone marrow test!  During his exam they told me that he has an ear infection in both ears... Grier says his ears don't hurt... but he is on antibiotics because he has a port and fever and rick of infection!  He has had several ear infections.... always after we fly and MSKCC always finds it! We finished the exam... Grier co-signed the consent for his bone marrows and we left for CT -- there we waited and waited... we both were starving at the point... and by 2 they called him back.. He did great... I was suited up in my lead vest... They called from the office to ask my first name after the first 2 pictures.... and I must have looked stunned!  I told them and then asked WHY they needed to know-- He said.. Don't worry just need it for this book about the exposure levels???? Then the nurse came in and needed to put the contrast in his line... I tell her the wrong side of where his port is... and Grier says... Wow, MOM you forgot where my port was! The nurse starts to laugh because that was in his 20 year old voice... and she said oh Grier, you mom has a lot on her mind right now-- and he smiled his halfway smile.. 
2:20-- we were out of there headed to lunch and then had to go back again for his MIBG injection- Waited forever in the HOT waiting room and finally got the quick injection and went back to the RMDH--- played in the room a little... a few quick games of ping-pong and then we had to go get his antibiotic for his ear.
He talked me into a quick trip to Lester's ... looked at every pair of shoes they had and didn't like anything!  We ended up at Southern Hospitality for dinner... then a brisk walk back to the RMDH!  He fell asleep around 8:30-- tomorrow we have the MIBG scan at 9:30 and bone marrows after-- around 11:30?? nothing to eat or drink until after he wakes up from bone marrows... 
we have not heard anything yet.... not sure if we will by the time we leave... 
can't wait to wake up and see what the weather will be like.. Grier is packed and ready to go.... not quite sure where those dog are going to fit!! I might have to put them in the pink bucket.... but you know USAirways will count that as a carry-on!!!!

more tomorrow- and we did not win the lottery this morning :(

Our day started at 5:30 this morning..... Grier hops right up.... I was trying to decide if I should hit snooze and then telling myself I should have gone to bed a lot earlier than I did~ We got to the hanger around 6ish... and flew out on our flight around 7... landed in Teterboro and the car took us to the Ronald.  Our flight was awesome, easy, and relaxing. Grier played on his ipad and chatted... We have flown with BofA enough to know the pilot and some flight attendants... They are always going out of their way to make this easy.  Grier wanted to wait to eat... he said it was a little too early.. The driver of the car was extremely nice... I think Grier entertained him a bit because there is nothing like riding in a car with a NEW reader... he spelled everything and sounded things out for the entire ride... the driver started answering him by the time we made it to the Ronald!  He also told us he knew we were from NC so he turned the heat up in the car.... sounds like a perfect trip... but reality is we aren't on vacation!


We got to the RMDH around 10:40--- it took along time in NYC traffic... Our room was not ready so Grier wanted a HOT Chocolate... he thinks the dunkin doughnuts in NYC makes the best---- I totally forgot the no chocolate rule... but he ended up taking a sip and not liking it... whew..I don't think a sip will mess up the urine test! Can't wait to get that urine test out of the way so he can eat without me worrying about the "list"-
We walked backed to see if our room was ready and it was.... made beds... unpacked our "BOX" from storage... and met up with Julie and Adam.  We got some lunch and met up with Julie and Adam again after their last appointment.  The boys were being treated to a VIP tour of FAO schwarz so we walked to FAO and met our toy soldier, Rich.  Barbara from Candlelighters of NYC planned this amazing tour --- Adam said it was his best day ever in NYC... :) Grier was a little shy but has talked about it non-stop tonight! It was alot of fun... they toured the whole store and danced on the piano and ended with a shopping trip using their gift card that candlelighters gave them.  Grier SHOPPED  and looked at everything... changed his mind 4 times... but is the proud owner of 2 new stuffed dogs... yes, bigger than a matchbox car for those that are wondering! The 4 of us took a cab home... and went to dinner at the RMDH.... it ended up getting delayed so we played BINGO for an hour first and then ate dinner... I think I said to Julie... I feel like I have been here for 3 days already!!! 
It was a good day in NYC for us... I wish I could say that was the case for everyone here.  The reality is we wouldn't be here at the RMDH if it weren't for pediatric cancer... and that is the case for the rest of the people here... we would be at home with our families in all parts of the world.  


Tomorrow our scans start... we don't have to be anywhere early.... whew... it will be a different kind of day... reality will hit hard as they access Grier's port and I make a game out of sucking down contrast for his CT.  He informed me tonight he liked the CT because it makes him "warm"--- that is a new one... He is describing when they inject the contrast!  He also is looking forward to the white medicine.. aka anesthesia... all things that are our reality right now... 


pray if you pray or do whatever you do for clean scans for us and all our friends here scanning this week... also for options for those that did not get good news... 

Ready to FLY

The countdown to our NYC trip has been on for a week or so.... Grier gives me the countdown at least daily... you would think we are going on a vacation or something! He has a plan.... and I have a plan... mine is all medical hence my nickname Grier has given me... "medicine momma!"-- everyone else has another nickname.. Grier is more worried about "his NYC routine"- that is how it should be.. I guess! I will worry about the medicine part of these trips.  He told me the other day that he thought we should bring an extra suitcase with us... when I asked WHY, he said because he wants to go shopping at "FAO Shorts"~ funny.. since everytime we go I always tell him to pick something small like a matchbox car that will fit in our suitcase home!! He was ahead of me this time.  
Our schedule is very packed with appointments.... Thursday he will have his CT-- he can not eat or drink anything before except for the HUGE amount of contrast.  After CT.. he will need to take his SSKi drops ~2 hours before his MIBG injection  Friday will be the MIBG scan-- the long slow scan looking head to toe for NB cells... This wil be the 5th one I have actually gotten to sit beside him in and entertain him and keep him relaxed so he stays still as a statue. I have yet to watch the screen as it scans his body... I honestly think I would throw up if I saw the screen!  I have been dreaming about this crazy schedule since last week.... there are so many things to remember and I forgot something in my dream.. and missed our flight home.. clearly scanxiety has taken over my sleep! 


The surprise for us this week was a flight showed up on Corporate Angels.... We are flying with one of the banks and someone we know so it will be fun- crazy that I am not allowed to say the bank name.. but this bank is on my favorite list! This earlier flight  will give us all Wednesday to get ready for the two days at the hospital and maybe squeeze in something fun. I am hoping there will be something fun at the RMDH Wednesday Night...or maybe we will try to venture out and see a Rangers game... who knows... Grier might have me shopping for a Jets jersey after last nights win! 


After the MIBG scan on Friday, he will have his bone marrow tests... we will go back to the RMDH and clean the room and pack our crate and then we will try to get out of NYC.... and head home on USAirways! Hopefully he will not be in too much pain... I also just checked the weather and it will add to our excitement on Friday... storm possibly coming to NYC?? This is a quick trip packed full of questions about what is going on in his body right now... and what trials we should try to keep NB away.  I just recently started a process at CHOP... I wanted to know about a vaccine trial I heard they had that was opening up soon.. so it looks like scans and reports may be sent to philly as well-- just to see what all are options are at the time.  Really... I am most concerned about NYC this week -- one day and city at a time :) 


Nothing else really to report.. the kids had some photos taken by an awesome photographer that happens to be in the family.  She captured their personalities and even made them look like they enjoy each other.  I am not sure when all the growing up took place... but they look older and wiser.  If you need a some pictures taken.... check out Jennifer.... she did a really nice job! check out her site..www.jlhphotography.com


Next update from NYC on Wednesday the 19th... if we have internet at the RMDH :) 


www.gogriergo.com for pictures that I am talking about.... caringbridge has a size limit

Maintenance required....

I have been anxiously waiting for an email with our plan from NYC... the clinic here did not hear anything so we were in limbo this week-- The maintenance required light came on in my car... and I have been staring at it--- because I know "maintenance IS required"- I am not talking about the car but Grier!! That light is just another reminder... It is scan time... and time to switch gears and head to NYC.


Last May when I got the news there was a new spot on Grier's hip, a wise friend told me to think of the relapse as a "pit stop"... so we did... and this has been a LONG pit stop... I thought we would have a new direction after we got the NED status in October~ but instead we did more low-dose chemo for 3 weeks.. every 21 days. Other than going to the clinic for 15 days for a few hours each time it was not that bad in terms of other treatment Grier has had to have.  He still was able to go to school, play sports, and be a semi-normal 6 year old.  I was able to juggle all those appointments, raise some $$ for better treatments options for children ... carpool, pay bills, manage a house of 5, manage the holidays and be a semi-normal mom~well--not really!!  We will soon find out if the low-dose chemo kept the NB cells away -- scans have been scheduled in NYC.  It is THAT time again... You would think after almost fours years of dealing with THAT time I would be a pro at it-- and in some regards I am -- so is Grier!  The last two days I have been cleaning and organizing... probably nervous energy... or maybe a "nesting" instinct-- but I tend to make changes and throw out stuff right before and after scans... funny.. I know-- I guess there could be worse things to do--! Grier and I will fly up to NYC on the 19th... and come home on the 21st-- Hoping corporate angel  has a flight for us-- just to have an easier time traveling~ you know we don't want to be exposed to radiation from airport scanners!!! ~sorry.. I could not resist!!! We are scheduled to be up there the same time as another friend of ours that has NB--- Adam and Grier have been 3F8 roomies... always nice to see a familiar face in hospital!  Julie and I can have scanxiety together while the boys play in the playroom!! What a twisted world I live in NOW!!!  I really wanted to go next week but the hospital is FULL-- hmm.. who knew pediatric cancer was such a booming business!!! Actually I have not ever seen the clinic NOT full!  14 days at home will be plenty of time for me to mentally prepare for the trip... I swear Grier must have an internal clock that tells him it is time for NYC again... he started asking a few days ago when it was time to go to NYC again? 


some normal stuff--
Grier was very excited to go back to school... he asked over and over if he was going to be in the same class again... a pretty good question considering he has taken LONG breaks before and ended up in different classes. There was a possibility of another round of low-dose chemo this week--- turns out we got the week off-- He can get back to a routine of school....golf... and today he had his first swim lesson! I have been trying to fit swim lessons in our schedule for a LONG time... and today just seemed like the perfect day... :) 


2010 ended nicely for the 5 of us... I would include Tucker, our golden in the total but his "counter surfing" gave him a tummy ache after he ate a stick of butter...  we need to teach him to use a "pink bucket!!" There is never a dull moment around here!