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.