all over the place on this blog!

oh wow-- I just did an entire blog... and checked my email and it looks like plans are changing a little for Grier's treatment.  We just got the OK to do HIGH DOSE 3F8 ... now I am waiting for the time line.... what a crazy ride we are on~




Another 10 days have passed in between BLOG entries.... it seems like a year when I think what we have done.  Don't worry I am not going into detail... I will just hit the highlights of the past 10 days... assuming I even can remember them!

Grier started accutane last Monday after a visit with Dr. M in Charlotte.  He had some intial blood work done before treatment and then took his two huge pills that night.  Grier is up to 43# so his dosage increased since the last time he was taking accutane last April.  He is going to take 60mg twice a day for 14 days and then have 14 days OFF... The lotion has been bought and the aquaphor has been restocked at our house.... the skin issues started on day 3... as did a few emotional spells that normally would not have happened over something so little.  He also has been wearing his eye patch twice a day... and one day it was "accutane mood swing" vs. eye patch-- and I declared accutane the winner.. and the eye patch came off and there was peace. His lips are the worst right now.. and I have ordered the special lip balm one of the WDS teachers gave us last year... I am hoping I can get permission to use it since he is not on 3F8 right now. It really is the only thing that works!  His appetite has decreased... and his legs ache... just the symptoms that make me crazy.. but he has had them each time with accutane. Today we had to go back to the clinic to run a blood test to make sure his blood levels were ok-- b/c of the medicine --He said as we were riding the elevator... Maybe we should ask them to "take a Picture" of my leg?? WHAAAT??? WHY?? He said.. because they are sore...and continued to share how fast he ran on the playground...I explained no picturs were needed right now... maybe he could just slow down a bit!

Grier got his glasses this weekend and it has been more of a challenge than I thought... the eye patch is much easier.  He has been slowly wearing them but swears he can not see with them on... He was shooting baskets outside with his new rec specs and came running in to put them up-- MOM, these make me miss!  He was reading  a book and kept peeking over the top of the lenses to "see" -- he just couldn't see the words when he looked through them!  I thought he was going to put these glasses on and tell me all the things he has been missing since his sight is so bad... not the case yet~!

Yesterday I flew to NYC for the day with Lesa and Ashley.  We were going to celebrate Liam.  We left Charlotte at 10.. got to NYC... ate lunch at Lenny's...walked down 3rd Ave for a little and then headed to the most amazing service I have ever attended.  As soon as we got out of the cab we heard the bagpipes ... we entered the church and all you could see was a "sea of orange" and pictures of Liam with his grin.  The NYFD processed in and the service began with the cast of the LION KING singing a Circle of Life... a few more songs were sung. Bob Woodruff, Dr. LaQuaglia, and Linda talked about Liam... The Liam I knew was the same Liam they knew... the stories were very accurate and a perfect picture was painted of a little boy with a love of life. There was not a dry eye in the church and then Gretchen spoke.  I still don't know how she did it... but she did and delivered the best of the best for Liam. The song He Lives in Me from the Lion King was sung as well as a Season of Love.  The NYFD talked about Liam's visits he made to the firehouse and his locker.  They talked about cancer, neuroblastoma and the amount of harsh treatments he had in 4 short years.. but the message was clear.. Liam lived each day even the days called "hospital days" and by lived I mean... scootered all over Manhattan, went to the museums, loved to go to school, you name it he did it... he was not stopped by cancer... The hardest thing to explain is the amount of treatment these kids get compared to Adults... if an Adult were to get the same they would be complaining and missing work and doing nothing... but these kids keep living. They do not know any different.  I had moments in the church where I was so thankful that my child was treated at the same hospital as Liam.  It is an awesome place.. even with all that waiting we have to do!  I am so glad I went ... it was a very short trip... but an experience that will impact me forever.

Here is a link if you want to see a brief video of the day.
http://www.nydailynews.com/ny_local/2011/02/15/2011-02-15_bravest_hearts_cry_for_lil_liam.html

On the flight home yesterday, I remembered a conversation I had with another cancer mom, from Charlotte last April. Her son did not have NB.  She asked me if I was excited that Levine's is started a coalition for cancer?  I said, yes. And she said, you wont have to travel anymore for treatments. I told her that would not change.  I take Grier to specialists for a reason... they see NB all day.  Our docs don't treat other pediatric cancers... they specialize in NB.  I also shared I didn't have time to wait for the coalition.. maybe I should have been more excited... NO.. she really has no idea the complexity of this cancer. After listening to the surgeon and the Nurse Practitioner talk I knew that was a good choice we made when we chose MSKCC.  That feeling was reaffirmed today when we went to clinic for a blood test... and I was asked by the nurse what type of test did Grier need?  hmm.. well, it should be in his chart... I told her we were told to come in a week after accutane to make sure his liver levels are ok.. and she said, we don't deal with accutane a lot so I was just checking... well, that was my icing today... accutane is actually part of the COG protocol... and Levine is a COG hospital. I am pretty sure most of you reading this will be saying WHAT in the H is she talking about???? :) I am just talking about the disconnect I feel when I have to explain things to some people that should be explaining things to me!


On a final note... THANK YOU to those that went to Ben & Jerry's yesterday to support Cookies For Kids Cancer.  We raised around $1000.  The exciting news is that there were many fundraisers going on yesterday in Liam's honor.  There was a restaurant called Poole's in Durham? that donated 100% of their profits yesterday.  Yep, 100%... and they did not pick a random day.. they decided to do it on one of their busiest days.... Valentine's Day.  It is my wish that people will do more of this... have a bake sale ( it does not have to be a bake sale on STEROIDS!), ask a business to do a CFKC day or night.... plan a 5K for CFKC... I just want to see people do it... It is not hard... Lesa and I are trying to get different people to help and participate... we love our "regulars" that always come to anything "Cookies" but it is time to make it bigger and better... so, I know you are all busy.. me too :)--- but think about what YOU can do to raise some awareness... Do you think Charlotte has a restruant that would donate a days sales to CFKC??? I bet we do...