The Balancing Act~

I know, I know.... I have been quiet lately .... !  I am trying to balance this crazy life we live~ with some normal life... but I am about ready to throw in the towel! Really...crazy is the way it is going to be the rest of our lives...... living in the moment and making decisions on the fly.... all things I do not like as the self-proclaimed planner that I am ---- but I need to change or I am going to go crazy... Neuroblastoma is the leader in the house right now.... uggh! As much as I hate that word... I can not fight it anymore.... it is here to stay so I need to learn how to live with it because it is NOT going away~ 
Some of you might be thinking something has gotten worse.... no, I don't think so... we will not scan for a few weeks... then we will see where we are in the fight.  

Grier and Mrs. Nickell at the WDS celebrating his summer 6th birthday at school -

Grier and his "rat fink"--- 

Grier had a nice low key 6th Birthday after his day long of transfusions.  He got the bike he wanted since before Christmas.  And has gone on rides around the lake a few times.... He has not had a "party" yet..... but it will happen as soon as I can figure out a time to do it.... :) Good thing he celebrated his birthday at school before relapse..... :) We also had a family party and he had his dinner requests... grilled chicken and guacamole!.... hmm~ he still has some weird requests even this far out from chemo.  He has started coming out of "HOUSE ARREST"--- his counts are OK--- not great so we have gone to a few places.... he loved going to Grace's 3v3 game.... and of course has made a trip to the mall.... thanks so much for all the cards and presents for his birthday.  He has really enjoyed shopping with his $$$$---- 


He went to the clinic on Monday to have counts checked to see if he was ready to start round 2 of chemo.... it is going to be some different poisons this time... NOT ICE!  His counts came back and his platelets were low... not so low that he needed a transfusion but he could not start a round of high dose chemo.  After those results came ~ the discussion of our annual beach trip came up... We have gone to Topsail the same week for the last 6 years~ yes, sometimes with LOTS of medical supplies in tow and last year with NONE. I was not worried about the medicine that would need to be given while away.. but I was worried about a fever due to low counts and possible transfusions... not the best way to spend a vacation.....Since we are waiting a week to start chemo after we get back -- we do not have to worry so much about those things... and he is feeling really well right now... a great sight to see after the last month of ICE-  So, after talking with NYC and CLT it was decided that we will go as planned and come back and start more chemo.... as well as scan to see where we are in the fight.  Today we went back to the clinic for Grier to have counts checked again and to have blood sent to NYC to check his HAMA level..... one thought is to enroll him in a new study called NK ( Natural Killer) trial.... not sure all the information yet but I think they combine 3F8 with a blood infusion from me or Jeff--- I will have to read about it while I am at the beach.... I have also asked them to send a sample of the original tumor to CHOP for ALK testing.... more info to come on that too--- trying to get the options open since there is no road map for relapsed NB...  I will be doing lots of reading so I can ask lots of questions about the next steps we need to take.


We are all looking forward to spending time at the beach with family and friends.... it is a HUGE break from reality.... and what we all need right now....  

            
Grier has adjusted very well to his shaved head.... I am at the point I want him to wear a hat to avoid all the stares.... but he says it is too hot and he does not get bothered by the looks!!!  His activity level is great... lots of energy... riding his new bike and scooter and playing some world cup soccer in the front yard.  
He has had lots of visitors.... he even had a special visit from the High Point University Baseball coach.... and has not taken the hat off since that day... He is very excited that he has Micheal's #24 uniform-- it is a little big for him.... so he want to hang it in his room...

Hayes and Grace ended a nice school year with awesome grades.... We are very proud of them....  this year has been crazy year since the first day of school-- literally!  They came through it with all A's---for Hayes and A's and B's for Grace---- Hayes turned 13 on Saturday and left for the beach for a week with his friend, Henry and family--- He seems to be having a great time fishing and being at the beach with The Shimps.  Baseball will start back up for him when we get back from the beach.... but for now he is just being 13--

I hope you enjoy the pictures of Grier from his past birthdays since we started this journey..... I did... The above picture is June 2007--- He was very much into the WONDER PETS... and had just finished 4 rounds of chemo.... 

Grier celebrating his 4th birthday-- in Mrs. Leary's class..... 

Grier's super hero party to celebrate being 5 at the Charlotte Jr. Gym....

Grier's school party to celebrate his 5th birthday with friends in Mrs. Thompson's class-

The famous "Boston creme pie" cake he wanted for his 5th birthday... but really he just wanted a red sox cake..... 

Grier and his Arizona Diamondbacks cake for his 6th Birthday!

That is it for now.... I need to pack... ( a skill I have gotten very good at!!) More to come next week as we relax--- Thanks for all the birthday wishes for the boys... We are going to celebrate again at the beach.... Grier did make a wish when he blew out his candles on his baseball cake.... and it was "I wished I could play baseball again."-- 

The final bit of exciting news at our house is that Grier announced this morning that he has two loose teeth..... very exciting but I am going to call the clinic to see what I should expect with low platelets.... never a "normal" moment...  HA!