We are back from another wonderful week at Topsail.... it is just amazing how much stress you can be under and just being at the ocean and with friends and family can make it all seem to go away.... "seem to go away" is the phrase I am going to emphasize...  Our week was awesome but it did not make the worry go away... Grier was neutrapenic ALL week... meaning we probably should have been on house arrest.. not only did he not have any immune system but his platelets were low as well as hemoglobin!  I was waiting for the other shoe to drop... BUT it never happened! NO fever.. no fatigue.. no bruising... !!! Besides body surfing, swimming, playing and eating all week ~ we had to take him into Wilmington twice for a blood test.  The worst part was the drive to and from-- it was about 45 minutes EACH way..  I am a little spoiled with our 10 minute drive to the clinic... The pediatrician's office we went to was better than I expected... Their lab was awesome and Dr. Hawthorne called to check on Grier twice during the week... I think we shocked the girl that ran his CBC on Monday ~when she read his labs... his WBC was .1 and platelets were 54.. I was so happy they were not in a range for a transfusion... she wanted us to wait to talk to someone because everything was so low!! We didn't wait... Grier was ready to get back to the beach!

NOW WHAT???
Well... Grier's counts are still low... we knew this was a possibility with millennium.. He had another CBC on Saturday, Sunday, and MONDAY-- and he said "If they keep taking my blood I am going to be just a skull soon!" I think he meant skeleton but you get the point... he is a bit over it! Sunday was not in the plan.. but Saturday's blood clotted before the lab ran it... so we got the call Sunday morning about that!! They said to come up and have it done at the hospital... so Grier and I rode our bikes... Actually it was really fun.. We headed down the greenway and left our bikes with guest services while we ran up to get a finger stick... THAT is what we thought he was going to get.. but the lab had other orders that we did not know about... I did not have my purse with me so I did not have any Emla or magic cream... I asked them for some and then they said... WE CANT do ports here... oh... things were going south really fast... They needed to use a butterfly needle to get blood from his arm! Ugh.. I asked for emla but they said they did not have any to me... and told Grier they had a "special" cream... they proceed to put Vaseline on Grier's arms... and told him to wait while it works!! Seriously... he is no dummy... he knows his meds and creams! He cried for a quick second and before he knew it the blood was drawn and we were back on the greenway headed home on our bikes!!!
We had another visit yesterday... just a check up... and CBC again... luckily his immune system is recovering but his platelets and hemoglobin are still SLOW to recover... We were suppose to start the third cycle of MLN (Millennium) on Wednesday but his counts are going to make us delayed... he has to be 100 for Platelets and ANC of at least 1000!  The good news is that they are going to FedEx to pills to us... so I don't have to fly up there to get them! As of right now we don't have a start date... we will just have to wait for his tired, worn out bone marrow to recover! CHOP called today and told me since he has been over 8 days of nutrepenia we will have to do neupogen next time to help his bone marrow recover faster--- we actually may try Neulasta instead of the daily shots... Neulasta is a one time shot that is given in the clinic... not be me! The hope is he will be ready in a week to begin the next cycle... he is going to have to get checked on Thursday and Tuesday ( since Monday is a Holiday!)- I didn't even realize Monday was a Holiday until they said it today!!!
Once again we are in a bit of Limbo with a schedule... Grier and I will have to go to Philly for scans after the 3rd cycle of Millenium... limbo is a little easier during summer... !
enjoy the pictures below (or on www.gogriergo.com)... if I had not told you that he had LOW counts I bet you would not have ever guessed!

The night before we left for the beach we went to Shrek the musical... Grier had seen it in NYC and laughed just as hard two years later in Charlotte!

Trouble x3!

If only we could wake up to this EVERY morning!

Sharks!!!

He caught this one...

Fishing Friends!

NON- STOP Surfing...

6 years of TOPSAIL Fun..

That was THEN...

This just makes me laugh... 

This is NOW!

Riding the RAT FINK to LCH!

My picture I drew for Corporate Angels--

one week ago-

We have been home one week... Grier finished all 7 days of his 42 pills...we celebrated two birthdays ( Hayes-14 & Grier-7), one 5the grade graduation, 7 baseball games, one doctors visit, one dentist visit... and caught up on SOME of thee mail and listened to all thee phone messages... ( sorry.. some were really old!)

Sounds like a busy week, huh? Grier has had some side effects from thee medicine.... this time his feet did not turn bright red... instead they blistered! Grier said it looks like he has "pads" on his feet-- he is right-- the blisters are now white on his heels and toes! We went to LCH today for a check up and blood test... check up went fine... his skin is irritated everywhere there is some friction... armpits, feet, hands, thighs, you name it- hopefully this will clear up soon since his last dose for this cycle was last night. His counts are hanging in theere... I actually had theem draw an extra tube of blood for a type and cross just in case he needed a transfusion like he did last time... amazing his hemoglobin has not fallen yet and his platelets are still over 100-- I hope they stay that way... the not so good news is that his ANC is 200 ( NO IMMUNE SYSTEM)- We will have to go back Friday to check again... My hope is that his counts have already hit bottom and they will go up in the next fews days... Besides these side effects, Grier was not so enthusiastic about the pills this time... We had several moments where he was just pissed off that he had to take these pills... and he could NOT eat... He told me to call Philadelphia and tell them he did not want to do this medicine again... Maybe this is truly how he has felt all along -- he just needed this medicine to bring out these emotions... I understand how he feels a little... he has been a test mouse for a LONG time... over four years...! 

I don't think he looks as healthy as he did before we started MLN... he has a "gray" look to him... and obviously it is not anemia since his counts are ok.... His hair has totally fallen out... and he looks like Mr. Clean when you put sunscreen on his head.... his eye lashes are almost all gone... and I think that is the kicker -- eye lashes and eye brows make such a difference - that may be the difference I am seeing.

Our family beach trip is coming up this Saturday... it is pretty much a given he is going to have to get his counts checked next week... and since his counts are so low right now.. CHOP has already told me to plan on going twice next week. The good news is he is only going to have to get a finger stick... I have been told not to let anyone touch the port unless it is an emergency... Probably the most reassuring part is that we will go into Wilmington and see a pediatrician that my friend, Anne knows and has already talked to-! We wont have to go to an urgent care.  We will still have to fax the results to CHOP... but that should be easy.... 

So, we have survived thee first 3 days of summer at home... I will be honest... I have only looked at the FOR SALE ads once... 3 days and it didn't take too long to feel like we were all on top of each other! The key is going to be staying busy and not at home! So thankful we will be at the beach next week so we can spread out and relax! 

NEWS RELEASE about upcoming COOKIE EVENT in CHARLOTTE, NC

FOR IMMEDIATE RELEASE                                           For more information contact:

                                                           Elisabeth Podair, Account Executive

704.657.7637 or epodair@sparkstrategicideas.com

 

Stomp, Chomp & Roll Hosts Cookie Contest

to Benefit Cookies For Kids’ Cancer

Charlotte, N.C., June 8, 2011  – Charlotte-area restaurant and entertainment group, Stomp, Chomp & Roll will host a cookie recipe contest to benefit national nonprofit organization, Cookies for Kids’ Cancer.

Finalists in the contest will be invited to have their cookies judged on Friday, July 1 at 2 PM at The Flying Biscuit Park Road (4241 Park Rd) for a chance to win a place on the menu for their cookies at all six Stomp, Chomp & Roll locations until September 30, to recognize Pediatric Cancer Awareness Month. First place also includes free food for a year at any Stomp, Chomp & Roll location.

Submit your favorite original cookie recipe to: cookies@stompchomproll.com by Monday, June 27.

Judges include:

·       Grier Christenbury, Cookies for Kids’ Cancer Representative (age seven)

·       Kathleen Purvis, Food Editor (The Charlotte Observer)

·       Lisa Frame, Blogger (Daily Pinch, Powered by Women and Mommyality)

·       Kiran Dodeja Smith, Co-Publisher/Editor (Little Ones Magazine)

·       Richard "Foodzilla” Grucia, Founder Good Eats & Meets,  (largest dining group in the country per capita, based in Charlotte)

All proceeds from the sale of the winning cookie until September 30 will benefit Cookies for Kids Cancer. Second place will receive $100 gift card to any Stomp, Chomp & Roll locations and third will win a $50 gift card to any location.

Stomp, Chomp & Roll includes The Pizza Peel & Tap Room (Cotswold), The Flying Biscuit Café (Park Road Shopping Center and Stonecrest), Monkey Joe’s (Park Road Shopping Center), Mama Fu's (Cotswold Village Shops) and Moe's Southwest Grill (Northlake Mall).

“Partnering with Cookies for Kids’ Cancer combines the two things Stomp, Chomp & Roll is passionate about- great food and supporting the Charlotte community,” said Will Bigham co-partner. “We are proud to support such a worthwhile organization like Cookies for Kids’ Cancer while giving back to the many families in need they benefit.”

About Stomp, Chomp & Roll

Stomp, Chomp & Roll, filling Charlotte bellies with food and laughter, is a Charlotte-based restaurant and entertainment group. Locations include: The Pizza Peel & Tap Room (Cotswold), The Flying Biscuit Café (Park Road Shopping Center and Stonecrest), Monkey Joe’s (Park Road Shopping Center), Mama Fu's (Cotswold Village Shops) and Moe's Southwest Grill (Northlake Mall). For more information, visit www.StompChompRoll.com.

About Cookies for Kids’ Cancer

Cookies for Kids’ Cancer was founded by parents inspired by their son’s fight against cancer. Today pediatric cancer remains the number one disease killer of children in the United States, due in large part to a lack of funding for research into new and improved therapies. Through the concept of local bake sales and online cookie sales, Cookies for Kids’ Cancer inspires individuals, organizations, and businesses to join in the fight against pediatric cancer by raising the funds and awareness necessary to change the face of pediatric cancer and provide more families with the hope they deserve. Cookies for Kids’ Cancer grants funds raised to leading pediatric cancer research facilities including Memorial Sloan-Kettering Cancer Center, St. Jude Children’s Research Hospital, Children’s Hospital of Philadelphia, Texas Children’s Cancer Center and Dana Farber Cancer Center. For more information, visit www.cookiesforkidscancer.org. Follow on Facebook at www.facebook.com/Cookies-For-Kids-Cancer-Charlotte-NC-area and Twitter at www.twitter.com/cookies4kids.

The organization is a recognized 501(c)3 non-profit. Donations are tax deductible to the fullest extent of the law.

# # #

"Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we're in for another trip to Cancerland; land on black, we have a few more months of freedom."

I had to share some exciting news... Grier lost his front tooth yesterday... I guess all that consistent wiggling paid off! He was thrilled he could put it in his tooth bracelet- even more excited that the tooth fairy actually remembered to leave him a dollar the first night he left it out for her... 

Today we celebrated his birthday a little early at school since he is not going to be there on Wednesday. He brought doughnuts to share... after going round and round with Dunkin Doughnuts about trying to get only orange sprinkles on his doughnuts- I finally told him it had to be rainbow sprinkles and he said, "That is Fine".... ugh.. I should have told him that the first time instead of calling most of the stores around us! I feel like I am rushing everything just to get it done this week... actually I am !!! The end of school activites for three kids plus 2 birthdays are enough to make someone go crazy... add in a trip to Philly and a scan -- Let's just call that the cherry on top of my normal crazy! 

We leave tomorrow -- and it will be a fast trip. I have already started to give Grier his nasty iodine drops called SSKI- he has to take them for 5 days according to CHOP.... Good thing he takes medicine so well because this could be really hard... I just need to remember the DUM-DUM chaser and he is very compliant. 

I am not sure I have scanxiety yet... or maybe I just haven't recovered from the last sets of scans... who knows. I recently read an article about scanxiety and it actually has a name.. PSP .. or prescan psychosis! I love this blurb from the article... 

The medical profession is aware that patients suffer stress as our scans approach. Dr. Jimmie Holland, a psychiatrist at Memorial Sloan-Kettering Cancer Center, refers to the condition as PSP, or prescan psychosis. "Everybody feels it to one extent or another," she tells me, "particularly people who feel they have to know what's coming next. And if there's anything true about cancer, it's the unpredictability about what's coming next." 

As my scans approach, I become increasingly wary and deliberate in my actions. I put off major decisions until after I hear the results. My breathing gets tighter. And those regular drives to the clinic are among the most tense I have — though there's nothing I can do at this juncture to affect the outcome.

as·sent/əˈsent/

Noun: The expression of approval or agreement: "a loud murmur of assent".

Verb: Express approval or agreement, typically officially: "Roosevelt assented to the agreement".

The last time we were in Philly.. I was signing consent forms for Grier to participate in the Millenium trial.  Dr. Mosse commented that is would not be long before they are going to ask Grier to sign assent. This was a little surprise to me... because number he is ONLY going to be 7. How much does he really know to be able to make a decision about his treatment? The most interesting thing was that if he was diagnosed after he was 7 than this would not apply to him... only if his treatment began before he was 7- I am not sure I am ready for him to be able to give assent... I think a lot of his fighting spirit and good demeanor comes from just "being routine" for him... He will be 7 on Wednesday... I should not have to sign another consent form unless treatment changes.  I am hoping it does not change but the scan will be able to tell us whether we stay on this course or change. 

Sorry if this update does not make sense... I think I will blame it on "prescan pyschosis"  I will update from Philly... we have a room at the sheraton... and other than the 96 degrees it is expected to be on Wednesday- everything else should be what we are used to in Philly (I am just glad it is not suppose to rain!)