We are all doing fine.... Grier has just finished his 14 day stint with accutane... and now we are trying to regain some control over his chapped lips... and peeling skin.  We have a few new things in the arsenal of lotions to try.  I think I could fill a whole cabinet with all the stuff we have for skin. During the 2nd week, he experienced the "tin man" effect... I just call it that because he walks/runs stiff... and that is not how he normally is while playing.  He was a little more frustrated this time so I made the call to the Dr. to ask the question "do you think this is accutane?" -- we think it is and were advised to go get Epsom Salts for bath time... so that has been added and the walk has gotten better...  Everything else is good.. the glasses and the eye patch are still a challenge but honestly in the scheme of things this is the small stuff... and I am not that worried about it...

Many of you know I turned the BIG 40 yesterday... and had a great birthday.... even if I did have to gather the crazy posters that were hung all over town with a picture from middle school-- think Sue from THE MIDDLE!!! Thanks Mom and Ross... :) Grier is still chanting Lordy, Lordy Amy is forty-- he helped make some of the signs!! I had the best treat and that was a night OFF with my friend, Anne.... we went to the Ritz and took a nice break from reality... I am kind of thinking it should have been 40 nights off-- one night for every year!  Anne has spent time with us at the Ronald and this was like night and day compared to the Ronald.... :)

what else??? That is it-- we are busy as ever... and starting to think about what kind of Cookies For Kids Cancer event we will do in May... Glad has announced they will match up to $225,000 for money raised in May. So, you know that was the icing on the cake to get our wheels spinning again.  Why May?? Well, Liam would have turned 7 and what better way to celebrate than to have a bake sale... not really one bake sale but the goal is 700 across the country JUST in May!  We are thinking BIG again... need new places and NEW faces... maybe the golf tournament or Speed Street... hmmm.. maybe NOT speed street... I still remember last May at the Speedway when we had a bake sale and I had beer spilled on me and smoke exhaled in my face as I said "all money donated goes to help children fighting cancer"-  Might need a little more time to pass before I do that again... :)

MORE DETAILS TO FOLLOW... was the last email I got about the possibility of doing 3F8 ( a week long antibody infusion that is quite painful)  I went about my day thinking there could be a possibility to start shots today and fly to NYC on Sunday for the week.  I did not know for sure but that was the mode I was in.  I had to get to the DMV to renew my license because it was going to expire on Monday... and TSA had already warned me I only had a few more days with my ID being valid when we went through security in LaGuardia.  That was top on the list today... and after waiting and waiting I am renewed but the card will not be in my hands for 8-10--- I even asked if I could pay more to express ship it--- He said - NO-- oh well!


Later this afternoon the details came in.... He wants to put him on the schedule in 4-5 weeks... His scans need to be done before.  Grier is already scheduled for scans in a month.  We will continue the accutane until then.  Another option was to give him high dose chemo after accutane... but I am sticking to the need vs quality of life.  I can not make him feel like he does when he is on high dose for nothing.... if there was even a question or a statistic to help me change my mind I would but there is nothing.... 4 weeks.... we will know more.




Good thing I did not express ship the license.... because plans changed a few times today.... 

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... 

‘Hope, Love and Ice Cream’ to honor child’s life

‘Hope, Love and Ice Cream’ to honor child’s life

Oh my... this week was CRAZY...  The eye appointment turned out to be needed... Grier basically can't see... seriously!  I have been feeling very guilty especially after being told how bad his eye sight is-- one eye is worse than the other so the "better" one helped... but it still does not make me feel any better!  He has picked two pairs of glasses out.. they are on order- and they are THICK! He also has to wear an eye patch 2 hours a day to try to strengthen the other eye.. this has been a little hard because we are covering the "better" eye-- and he is frustrated because he can't see to do what he wants to do in the 2 hours... I know it will get easier... but WOW... I didn't expect any of this... Our week with one appointment turned into a week with 3 eye appointments... 2 of which we spent shopping for eye glasses!  Anyone who has shopped with Grier knows he looks at everything and when he decides there is nothing that can change his mind.  He found NIKE glasses at the first place we looked.. We compromised on the color... the sample was BLUE.. and I said OK, if he would get WALNUT-- He agreed but later that night this was our conversation..


Grier~ Mom, Do I have to wear my glasses on the playground?
Me~ Yes
Grier~ Well, you know I might lose them ...
Me~ no... you will be fine.. don't worry about it
Grier~ Mom, when I run they might fall off and they are the same color as the MULCH!




I also heard from our doctor in NYC this week...and the verdict is to do accutane again... UGH!!! I hate that stuff but studies show it fights off NB... so at this point I feel like I can't argue about it-- because I would rather do this than NOTHING~ even though the side effects are awful.. DRY skin, bloody noses, headaches, muscle aches, and crazy MOOD swings- But I am not done pressing the issue of why we can't do 3F8-- and looking into what CHOP has... I really did not want to have to fly to Philly with Grier just to talk.. but I may at this point-- I am still trying to get more info.  Actually not sure when to squeeze all this in because NYC has actually changed our scan schedule.. instead of 12 weeks -- he wants Grier scanned again in 8 weeks.. so we are already on the schedule for March 17th-- not much time in between scanxiety this time!  I was really worried that they are watching something but after talking to our CLT clinic... all scans looked fine.. urine and LDH was normal... so I think he is just keeping a closer eye on him.... 


Yesterday we ended the week at the Urgent Care for Grace.... she hurt her wrist playing goalie on Thursday night... and on Friday she still was complaining a little.. so for peace of mind I took her for an x-ray.  She has a bad sprain... it is not broken and it is in a splint.  She said... MOM, this has been a busy week at the doctor's office.... yep... she was very right...! 


I finally got my car serviced...  and now I just need to make it to the DMV... 
Not sure when I am going to make it there but it is on the list.  


Grier has an appointment with Dr. McMahon on Monday afternoon.... he needs some blood work done before he starts accutane. 


If anyone needs an idea for Valentine's Day... On 2-14-11 Ben & Jerry's in Charlotte (Woodlawn, Fairview, and Myers Park), Gastonia and Davidson will be donating a 25% of their sales to Cookies For Kids Cancer.  If you order an ice cream cake they will donate 50% of the sale... They have really cute conversation heart cakes.. we got one last year when they did this and it was the perfect Valentine's Day treat.  Check out www.cowolina.com for more information and locations.  Lesa and I are flying to NYC for the day so we will not be there so we will need every one's help to make this successful.  Please add this to your calendar and share with your friends....