We made it home -- I can not believe how much we did this morning in the wee hours before we left for the airport-- packing sheets, cleaning and getting ready is more than most can handle and we did it on almost NO sleep! Our car picked us up from the RMDH-- and took us to LGA-- we were so early the breakfast places were not open yet-- except for one and it had a line with 30 people-- we had plenty of time and waited a little-- nothing else to do at that hour- We boarded our full plane-- and made it safely home- Grier slept the whole time on the plane and woke up saying "that was quick-- we are already in Charlotte!"-- He was ready for the day--- I took him to school and he was so happy to be back in his routine- I can not believe how well he does transitioning between NYC and CLT-- I am also shocked that he keeps going and going even after 4 bone marrow aspirations done less than 24 hours ago- Amazing... most adults would be down for the count for days!

I went to meet with the CureSearch Milestones Walk ( www.milestoneswalk.org) Committee while Grier was at school-- I can not believe we are 5 weeks away from Charlotte's 1st Childhood Cancer Awareness Walk-- We still have a long way to go to make this a HUGE event-- we are looking for sponsors-- your business can sponsor a marker for $500-- these markers will be placed around the lake at Freedom Park-- ( A huge thanks to A&K painting, Schattenfield Law Firm and Lowe's Motor Speedway-- they answered my plea for sponsors awhile ago-- ) We still need more! We are also working on other exciting things for the walk so you will not want to miss this event-- There is a team Go, Grier, Go!-- Right now we have 78 people on it -- I am still waiting to reach that 100 mark!! It is a $10 registration fee-- please register ASAP if you plan to walk-- it will help with the planning of the event-

During the meeting, my cell phone rang and caller ID said MSKCC-- I was a little nervous to answer because I thought it was too soon to hear anything else-- I was told that Grier's test show no signs of NB-- so I was relieved and thrilled- This will give us another 90 days in between the next set of scans-- And that covers the HOLIDAYS!!!

Thanks for all the thoughts and prayers this week-- And to Susan Shimp, my mom, and Jeff's parents for helping with Hayes and Grace this week-- Give me a few days to recover and I will update again!

We are done with all 5 scans--- I am not sure I have ever been so worked up about a work up !!  Sleeping has not been easy for a week or so!  We did hear results from 2 tests today... the MIBG was clear and the MRI ( of the brain and orbits) was clear-- That was nice to hear this morning as I put him on the table to have his bone marrow tests done-  We will hear next week sometime about the other 3-- I am relieved to say the least--  He did great all week with the waiting, anesthesia,exams etc.  And there is no doubt we are at a wonderful hospital great nurses and doctors-- 

We are headed home tomorrow and Grier is very excited-- Every morning he asks if "tomorrow is the day we were going back home"-- And I was happy to say "YES" this morning-  We are going to try to make a flight at a crazy early time--  Grier may even go to school if he is up to it-- Right now-- he is planning on it! And he is planning on bringing his tornado that he made at the science class here at the Ronald--

I will update when we get home- and as I know more results-

The MIBG scan went fine -- I guess! We do not know anything yet- Grier woke up well from anesthesia-- so that's what I mean - Childlife came down and tried to talk us into doing it w/o the white medicine-- I asked Grier if he could stay still and watch a movie while they took pictures and he immediately got "anxious"-- I looked at her and said-- no- we will do it with the white medicine- She wanted him to come back this afternoon and "try" the CT machine-- I said maybe next time because we promised him a trip to Toys R US-- he wanted to ride the Ferris Wheel-- and I did not think it was going to be as fun to "try out" the CT machine! Some probably disagree but we have not done anything fun this trip and I was going to get him on the Ferris Wheel if that is what he wanted to do-
Tomorrow we have to get him to drink 8oz of contrast-- we mix it in a clear liquid-- I thought I would be smart this trip --I packed his favorite...wild cherry water (capri sun)-- All but one was taken at the airport-- the TSA lady said he could have 1--- well, I needed 2 to get 8 oz.-- So, we will have to venture out later to find a clear liquid for the morning- We have to be there at 10:30 for his scan and then they will do bone marrows after that-
His ears are still very red-- he is on an antibiotic 3x a day-- believe it or not this is his first ear infection- We have a make shift fridge in the tub.... a basin filled with ice!!!!! Nice huh? I did not feel like going to the over stuffed community fridge for medicine-- (3x a day)
We walked to 42nd street and 7th Ave. today--- stopping at Toys R Us for a ride on the Ferris Wheel and a new SpongeBob leapster game-- we had a nice late lunch at Lindy's-- it was good but it definitely had NY prices-- a $16 grilled cheese!!
We found out there is not a corporate angel flight for us to return to Charlotte--so I booked a USAir flight for Friday--not much choice since most were sold out and some were $600 a person-- luckily I found something that was less! It makes me a little anxious to think that with the economy like it is-- our travels to NY may be like this for awhile- I may have to stop gambling with a corporate angel flight and just book a round trip as soon as we know when we have to return. I am sure it will work itself out-- and by the looks of 5th avenue today... you would never know about the economies troubles! Shoppers everywhere--with bags!

MRI done!

We are almost done with day 1 of scans-- I am really glad considering last night was one of the roughest we have had in a while-- Grier had a really hard time settling down - which was very surprising since he should have crashed from getting up early and having a really busy day-- Around midnight, he told me his ear hurt. I kept asking him about his ears because he would cover them up and talk loudly-- and this started as soon as we got off the plane -- I thought the air pressure was bothering him-- But he said he was fine-- and told me he was louder when he covered his ears-- Around 2, 3, 4, 5, 6 he was sleeping but not peacefully-- and I started thinking about the Urgent care-- not really where I wanted to go-- we ended up waking up around 7:30 and he said he was fine-- I knew that was going to be my first question at the check-up-
We got to the PDH around 8:30-- and he made his rounds to see some nurses-- he was very shy until they asked what he has been doing at home.... He would say.. I go to school (by myself!)-- and then he would tell them that Mrs. Johnson, Mrs.Thompson, and Mrs. Winn are my teachers-- One of our favorites said-- Grier are you in High School now??-- You have so many teachers! And Grier laughed and he said, No, PRESCHOOL!-- Then he shared with everyone that he does not wear diapers anymore-- just boxers!
After all the catching up, he had his check up and guess what??? Grier has ear infections in both ears! I was shocked-- one looks really bad and must hurt-- they were shocked too because he did not have any symptoms-- He was going to start getting immunizations again but because of the ear infections we are going to wait-- A fever is the last thing we want right now--since he has a mediport. He will still get his flu shot on Thursday while he is under anesthesia for his bone marrow tests-
Anyway-- He did great with his MRI-- there was a little confusion about having him try to do it w/o anesthesia-- I told them I did not want to try on this test because it is so loud and long (an hour)-- maybe a CT-- so they called the Dr. in to give him the white medicine-
He woke up and told Emily ( nurse) that he wanted a bagel and OJ-- well-- it was 12:30 and we ended up at Lenny's for a turkey sandwich-- He can not have OJ because of the urine test that he has to do tonight!! He insisted on getting out of the stroller at Lenny's and he was very wobbly -- I caught him a few times-- and finally convinced him to sit until he was not quite so dizzy!
We are back at the RMDH house now and Grier is playing an arcade game-- we have to go back at 2:30 for the nuclear injection-
Tomorrow we have the MIBG scan-- He will not be able to eat or drink anything after midnight again-- I will break that to him later-- He told me last night that he was starving!! Can't wait to hear what he says about that again--

We are settled in NYC!

We are settled in for our first night at the RMDH-- it is hard to believe we have not been here for 3 months-- but it was not hard to get back into the groove-- There are a few familiar faces and lots of new faces-- It is again a FULL house--!
Grier decided we should go to Southern Hospitality for dinner-- Jeff enjoys the sweet Tea and Grier wanted creamed corn... aka "corn soup"-- well, in 3 months the menu has changed so he had to settle for corn on the cob! We walked back our normal path and stumbled upon a new bakery right next to the RMDH-- Grier got a pink cupcake with a baseball topper-- ! He is watching a movie and all snuggled up in a Hello Kitty blanket--- Grace let him borrow it for a few days- He is a little apprehensive about tomorrow-- I told him we had to get a picture taken at the hospital and he was fine with that until it dawned on him that his port has to be accessed to get the white medicine-- AHHH! The smarter he gets the harder this is going to be--! I hope he shows the real Grier tomrrow at clinic-- he has been so funny lately-- His new favorite show is Fennious and Ferb--and he is saying things just like the show!

Jeff is busy watching baseball on the 1 TV--- I may go crazy if we are going to only watch sports in this tiny room!! I guess I can work on figuring out facebook!! HA!HA!

I am looking forward to getting these tests over-- I am very anxious and I already miss our new normal--!

Candy or Shoes Off?

http://wcbstv.com/video/?id=118285@wcbs.dayport.com--
Bake sale video -- very good!!

On Friday morning, Grier asked me what airport we going to when we go to NY? He said, Is it "the one with candy" or "the one where you take your shoes off"?-- I had no answer for him at the time because it typical fashion I was waiting to hear back from Corporate Angels. After I dropped him off at preschool, the phone started ringing-- And I was feeling a little better because we were getting some sort of a plan-- We were told of a flight on Sunday night- ( we have flown on this flight a lot--) Not my first choice since our scans do not start until Tuesday but I am trying to be more flexible-- so I said I would take it--- after multiple phone calls between us- working out the same details as every other trip we have flown with CA-- I was told OK-- you are on that flight! I had to start calling our NY social worker to change our reservation at the Ronald-- we were suppose to arrive Monday-- all of those details were taken care of and I was getting in my NY groove-- I started preparing my house.. bills paid, list made, checking my calendar so I could pass off my life to my mom -- I was getting tons of things done and the phone rang-- The woman said "BAD News"-- And I knew the flight had been cancelled! Yes- I should be used to this by now-- but I was assured this one was going- I immediately got on the phone to the social worker and told her we would not be coming in Sunday Night-- I am little worried about housing at the Ronald again-- She said it is tight once again and they are working on putting people at hotels but we SHOULD be OK-- will not know until we get there- I booked a flight (one-way) on US Airways-- and we will fly into NY on Monday- I wanted a late afternoon flight so Grier could at least go to school one day but with the room situation at the Ronald we need to get there so we have some daylight to find a place to go if there is no room!
I hate this part of going to NY-- I know it would be easier not to have to worry about the logistics of getting there- I can see why some choose to stay at the Ronald long-term-
We are shifting gears a little to get ready-- You have to do things differently when you go to the airport "where you take your shoes off"! Grier is looking forward to the trip-- not sure why but he is ready to go. He did ask if he has to get a finger prick? I said I did not think so and he wanted to know if that was forever? Certainly, can not promise forever but I will try to get them to take blood from his port! He hates the finger prick more than anything in the world! So-- for him this will be a good trip without that!

We are still doing fine! Grace's 9th Birthday is today and I am so glad we are not in the hospital celebrating like we did last year! Grier is planning for Halloween--- yes, he is going to be a shark! Or as he said.. A shark playing soccer! It is hard to believe it is almost Halloween again-- last year he was in PICU for Halloween so we are hoping for a much different celebration this year-

We have to be in NYC by Tuesday, October 7th for his 3 month scans-- I am not sure where our 90 days went but we have enjoyed each and every one of those days- "scanxiety"-- is my new word lately-- I am trying to not worry about the unknown and just live each day one day at a time!

We are still wrapping up from a very successful bake sale-- Thanks to all of you that came to support us-

The milestone walk is coming up soon-- NOV.15th! Please sign up to walk on our team-- I have not met my goal of 100 people yet! We also need folks to get involved in other ways-- I know so many things are going on with the world right now but there are also tons of kids fighting this awful fight right now too-- We need more teams-- think of a group you are in and do a team-- I know Union County schools are trying to get teams formed-- I also know a mayor is getting a team started---

I will update more when I know our schedule for going to NY-- I am waiting to see if we can get on a corporate angel flight--

Two days... lots of cookies, brownies, cupcakes, cakes, muffins, rice krispy treats.... lots of stories of hope and courage... bottled water... tons of help from children... tons of help from friends, family and neighbors... And the end result is a $2000 donation to Cookies for Kids Cancer--- a donation to support pediatric cancer research for all kids fighting the battle and those that have not been diagnosed yet--- hoping that this money helps doctors find a cure someday-!

Day 1 was a success!

Day 1 of the BAKE SALE for COOKIES FOR KIDS CANCER was a success! We had a lot of traffic from people going to the festival as well as our friends that stopped by to get a yummy treat- We were very busy-- People loved the idea and some just donated because they were survivors or they wanted to support the children in this fight- I can not say enough about the amount of baked good that you all donated-- cookies... cupcakes.. brownies... banana bread...AND the HUGE amount of items donated by GREAT HARVEST BREAD CO. and POLKA DOT bake shop-- People recognized this items right away and commented about how nice they thought those businesses were to donate--- AND we could not agree more! As you can see from the pictures.... Everyone had fun helping... Grier helped by eating a cupcake made by 7 year old Hadley Sparks--- I put a picture up of the ones she decorated-- Kids loved them and they did not last long!

If you did not make it-- There is lots of items that will be for sale today-- LOTS of Great Harvest cookies and sweets-- and German Chocolate cupcakes from Polka Dots as well as the local baker assortment---!

See you around 3 on Jameston---

Quick update-- We are almost ready for the Cookies for Kids Cancer Bake Sale--

The hours are as follows--
Saturday 4-7 ( or until we run out!)
Sunday 3-6 ( or until we run out!)

Come by and stock up on some yummy treats made by some local bakers as well as Great Harvest Bread Co. and Polka Dot Bake Shop! All proceeds will support Pediatric Cancer Research--

Checks will be accepted and are payable to Cookies for Kids Cancer-- It is a 501 (c) 3 charity--

If you can not make it-- You can do your own bake sale-- check the website for information
www.cookiesforkidscancer.org

Thanks to everyone that dropped off water and goodies today--- !! Every little bit helps!

Bake Sale update and a little Beethoven!!

More free Beethoven ringtones

Bake Sale update---

Well-- I put the word out that we are having a bake sale for Cookies for Kids Cancer and I have had tons of offers to help bake--- not sure if it because everyone that knows me knows that I do not cook much or they just want to help!!! I am going to assume they just want to help!

As of now, we have some cookies being donated from Great Harvest Bread Co. ( I think they are the best cookies in Charlotte!!)... I also know we have some banana bread, brownies, lemon bars, and lots of cookies coming--

IF you want to help--- please just bring your items to my house on Friday or Saturday -- I will have a box on my front porch. Here are some ideas that would be great-- cupcakes.. rice krispy treats... a cake.. and bottled water-- I do not need to know what you are bringing so if you have time just drop it by my house- I have clear bags to put things in as well as a cute sticker with the logo on it-

IF you want to ask your favorite bakery to donate something then please do-- I know we are waiting on an answer from Polka Dots (cupcake shop) and The Bread Basket has already been asked --they said NO-- but you may know of another source -- Go for it! Remind them it is for a great cause-- HT might do it at each store level-

I think we will start around 4pm on Saturday--- I will decide later as soon as I figure out the other schedules in my house--

Grier is continuing to do very well-- He makes us laugh-- Today, he got in the car at carpool and said he went to music.. I asked what song he sang and he said "Beethoven"-- I asked him to sing it and he hummed Beethoven's 5th-- And now our whole house is humming it and we have listened to it over and over in my car- He loves to tell me what part is going to get louder-- ( That is why the music is on here)

He did bring me back to reality this afternoon when he asked if we could take our dog to New York with us? I said no-- and he said he was ready to go again-- I asked him why he wanted to go so badly and he told me he liked to push the "white medicine"--- NICE-- he is looking forward to anesthesia! October will be here before we know it -

I will update before Friday to let you know the details of the bake sale-- Remember if you want to help-- don't ask me -just do it!! I hope this has helped with knowing what the needs are-

Be a good Cookie!

Grier had the best week of school last week-- He was very happy everytime he got into the car and told us lots of stories about his new friends at school-- We are so excited to see him get to be a kid again!

So many good things have been happening lately... the GGG team is growing everyday-- it is almost to 100!!! Everyone seems very excited about doing a personal page and getting pledges for CureSearch. I think we need about 30 more to go to reach 100--

I have also been working on something else!! I know some of you are thinking WHY!!! Well--- I can not sit here and do nothing, so I said "YES" to a birthday wish that Gretchen Holt ( Liam's mom) had about a month ago. She wished for 100 people to have a bake sale. She has just started a new organization to support pediatric cancer research. It is called cookies for kids cancers...www.cookiesforkidscancers.org Anyway, I asked 2 people to also have a bake sale and guess what??? They said "yes" too! My college roommate, Kristie has taken this simple idea and run with it-- her bake sale is going to in the middle of the NC Seafood Festival in Morehead City on Oct. 4th & 5th--AND the youth at her church have decided this is going to be a mission project for them and they will kick it off on their Youth Sunday! Amazing---! That leads me to our bake sale--- Grace has been waiting to do a lemonade stand and we decided to wait until Festival in the Park ( which is this weekend!)-- Why??? Well... on a good weekend they expect 100,000 people and most will park somewhere close to our house. We will be having a bake sale/lemonade stand in our yard this weekend--- The proceeds will go to Cookies for kids Cancer... and a lesson will be learned by all that help! Yes... I am teaching my kids to think bigger than themselves and to be a good cookie!!! Wish us luck as we try to squeeze in soccer and baseball games in between setting up shop in our yard!

Finally, the last story is about a family that decided they were going to raise awareness and recognize that September is Childhood Cancer Awareness month-- Kerri woke the boys up for church yesterday and told them to get ready to go-- She told them to wear their Go Grier Go T-shirt-- and her youngest said.. "MOM, Are we going to wear a T-shirt to church?" And she said "YES -- we all are!" She also had everyone wear a gold ribbon... And they were noticed and asked what the ribbons were for....

Thanks to all for that are working behind the scenes to bring awareness!!!!

This was taken from Forbes Magazine---

Commentary
Childhood Cancer: Where's the Money?
Helen Jonsen 09.12.08, 12:01 AM ET

Helen Jonsen

First it began as little night pains in the leg, the kind most parents associate with growing pains. We told our little girl, "Don't worry, it will go away," and the next morning it seemed fine. She ran and played and enjoyed the days of summer, like her friends did.

But our nine-year-old's nights became more painful. A swelling in her knee got worse. A slip in the wet grass became an excruciating accident. There was little sign of anything more serious, but the pain grew in intensity and frequency. A couple of weeks went by, and a new school year was about to begin.

Finally, one tearful night, when Dad was massaging her leg to help it feel better, he felt a lump in addition to the swelling. He took her to the pediatrician, hoping against hope. The doctor later admitted his "blood ran cold" when he felt her leg.

Within hours, she was diagnosed with osteosarcoma, a bone cancer that often first appears near the knee or elbow joint, and can spread to the lungs and become fatal. A biopsy confirms the diagnosis. Osteosarcoma is found in only 400 children each year in America.

In this case, less than a month after the onset of symptoms, the tumor had grown to the size of a wine bottle, forcing an oncology surgeon to remove 80% of her femur and her knee joint and rebuild her leg internally with a space-age prosthetic.

She underwent debilitating chemotherapy for ten months, her entire fifth-grade school year, and continues physical therapy and rehabilitation so that her bionic leg, with half its healthy muscle intact, can learn to walk again. We now believe our daughter is one of the survivors.

No matter how good the treatment, not every child survives. One child in five whose parents hear the terrifying words "your child has cancer" will die. Sometimes the advancing cancer cannot be stopped with all the weapons in the oncologists' current arsenal. Sometimes it is the "cure" protocol that kills them. And every time, a parent wonders why, and cries.

Our daughter's battle with pediatric cancer is one of 12,500 in America each year, the most common kinds being leukemias and lymphomas. In July, Congress acknowledged that research into children's cancers is underfunded. Why would that be the case?

For one thing, children with life-threatening diseases exhaust their families emotionally and often financially; even after recovery, neither the children nor their parents find it easy to advocate for themselves. The children are too young, and for the whole family there is always that fear of recurrence. Parents want some respite before the horror might begin again. Unlike other health care lobbies, they do not have the energy to march in the streets and call for action.

According to Kate Shafer, Director of Advocacy for CureSearch National Childhood Cancer Foundation, most federal funding for childhood cancer research comes from the National Cancer Institute (NCI), with a small amount coming through appropriations. Schafer says, "It's a bit difficult to determine how much in any given year is spent on childhood cancer research. It is around $170 million per year."

Most of that goes toward laboratory research. The funding for pediatric cancer clinical trials has gone down every year since 2003, and is currently $26.4 million. By comparison, NCI funding for AIDS research was $254 million in 2006; funding for breast cancer topped $584 million the same year.

It often takes one person's passion, born of pain, to raise awareness and start a movement. The sad truth is that it has taken a Congresswoman's loss to move her colleagues, but federal funding for research into the treatment and cures for pediatric cancer is being penned into law.

In June, the House of Representatives passed H.R. 1553, which authorizes $30 million annually over five years to fund clinical trial research, create the first population-based national childhood cancer database and further improve public awareness and communication regarding available treatments and research. That's a tall order for $30 million. It costs more than that to make one relatively small Hollywood movie.

The bill, sponsored by Rep. Deborah Pryce, R-Ohio, is called the Caroline Pryce Walker Conquer Childhood Cancer Act in memory of the lawmaker's nine-year-old daughter, who lost her life to neuroblastoma in 1999. The Senate followed suit, and President Bush signed the funding act July 29.

But as Shafer, the childhood-cancer cure advocate, notes, "the money still has to be appropriated. The next step in the process is to get Congress to include some, or--less likely--all of this money authorized in the appropriations bills that have to pass every year."

Cancer is the No. 1 disease killer of children in the U.S. and the second overall killer of children, behind car accidents. We tend to talk about it in hushed tones instead of screaming for help. But scream we should.

Research groups need collective philanthropy to fund research sufficient to eventually lead to a breakthrough--one in the form of newer, less invasive treatments, cures and maybe even early-detection screening and prevention in our lifetime.

On Sept. 5, the three major television networks, ABC, NBC and CBS, simultaneously broadcast a one-hour telethon, "Stand Up 2 Cancer," which, combined with related efforts, raised $100 million. (The organizers at the Entertainment Industry Foundation have not said what portion of that will go directly to research into pediatric cancers.) During the telecast, they aired the famous radio broadcast that launched the March of Dimes to end polio, during which singer Eddie Cantor asked all Americans to send in a dime.

Today, polio has been eradicated in the U.S. and in more than 200 countries, according to the World Health Organization. That should be a lesson as to how far a little philanthropy can go. May it be an inspiration in the fight against childhood cancer. Wish big.

Helen Jonsen is a Forbes.com senior editor whose daughter recently underwent treatment for osteosarcoma at Morgan Stanley Children's Hospital of New York Presbyterian, Columbia University Medical College.

Have you seen any gold ribbons lately??? I think it is almost hard to believe that there so little information about Childhood Cancer Awareness Month--- SEPTEMBER is Childhood Cancer Awareness month--! I keep hoping I will read the Charlotte Observer and see it on the front page-- or turn on the news and see a PSA about it-- but I have not! I will keep hoping!! I read about someone who was asked about the gold ribbon-- she knew what pink stood for but she did not know what yellow stood for-- I bet with more publicity no one would have to ask that question---

The Milestones Walk in November is going to be really big--- we need more teams to register- I would love to see teams from schools in our area form a team in support of children- Private, Public, Charter, or preschools--- it does not matter-- Just start a (team ETES, MPTS, Selywn, Eastover, Sharon, AG, Carmel, CCDS, Latin, PDS, Charlotte Christian, Trinity, St.Patrick's, St. Gabe's... I could keep going but we all know there are too many Charlotte area schools to name!!!) and raise funds for pediatric cancer research-- I am hoping to see some new TEAMS formed in the next week-- I bet there is not a school in the area that has not been affected directly or indirectly!

Since I am hoping for so much these days --- I thought I would share this poem that I read off Julia's site--

I HOPE...

I hope you never have to hear the words, 'Your child has cancer.'

I hope you never have to hear, 'The prognosis is not good.'

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

'It's going to be okay, Mommy.'

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'There is nothing more we can do.'

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck beside you and hear them say, 'Thank God that is over with,'...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

'The cancer has returned' or 'The tumor is growing.'

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)

Grier had a good day at Preschool!!! There was a lot of talking about school and planning and I can say it went as well as I expected-- I would love to say there were no tears but there were and that is okay-- He said he had fun-- more information is coming now that Hayes and Grace are home!!--- So many asked how I did?--- And I can say I was fine-- Unfortunately, I am an old pro at handing him over when he is screaming to people for medical reasons --so leaving him with three teachers that are there to nurture him was easy!!! Also, I had a nice message on my phone that said he was fine and having fun!! He asked me today when he was going to get to go to Hayes and Grace's school??? I told him had two more years of practicing at preschool before we could go to "BIG" school!!!

The Go Grier Go team for the CureSearch walk is halfway to goal of 100 team members!! Thanks to all that signed up for our team-- Grier and I walked into every store at Park Road Shopping Center on Wednesday and asked them to put up a poster for the walk--- ! And I can say some stores said OK!!! I was excited to get a YES out of some people!!!

Grier's appointment at the clinic went well-- he did have to have his port flushed and a full exam-- We do not have to go back until November--- We will be in NYC next month for scans so his check-up will be done there- That will be here before we know it--- time is flying by-- our 90 days are almost up!!

NUMBERS!

Lately, while Grier and I are driving somewhere in the car or walking around Harris Teeter or just doing anything he is constantly asking me about numbers-- His favorite is the speed limit sign--
Grier- "Mom, what is that number that has a 3 and a 5?"
mom- "thirty-five"
Grier- "Mom, what is that number that has a 2 and a 5?"
mom- "twenty-five"
You can see my point-- he is obsessed with numbers and this can go on for a long time-- house numbers.. prices... etc. And it really starts to get fun when he starts making up numbers!

Today is September 1-- September is Childhood Cancer Awareness Month. You will see yellow ribbons and they are for Childhood Cancer awareness month--

Here are some sobering numbers....
-Everyday 46 children are diagnosed with cancer in this country-- (That is about 2 classrooms of kids!)
1 out of 5 who is diagnosed with cancer dies
3 out of 5 children suffer long-term effects from chemotherapy and radiation treatments
More than 12,500 children are diagnosed a year and over 40,000 children are currently being treated for cancer-
I am not trying to scare anyone-- but I think we can not ignore the numbers-- It could be your son or daughter, grandchild, niece or nephew, your child's classmate, neighbor, teammate , & friend. What would you do?


I am setting a goal of 100 ( that is the average number of people that read the blog everyday!) for the Go, Grier, Go team ! Even if you can not walk on the 15th you can still be a part of our team of 100-- You just sign up to be a virtual walker. Currently, GGG has 15 team members-- We need 85 more! Easy enough huh?

Go to www.milestoneswalk.org
click Charlotte, NC
click join a team
type a % sign in the blank line-- This will search teams
when GGG shows up in the list -- click join on the right side
you will need a name and a password-- do not use mine because it will not work- This is for your page-
I know I have confused some but it is hard to describe without doing it at the same time!

More to come later about the Curesearch Milestones walk---

Grier has a big week ahead of him-- he will meet his new preschool teacher on Wednesday- He has an appointment with Dr. McMahon on Thursday and then on Friday school starts ! We are hoping for a smooth and easy transition for him as he enters preschool with only a few weeks missed due to trips to NY!--

Lots of stuff to write... maybe I should post more often!

I am not sure where to start--- I am going to try to be brief --!! We have been busy getting ready for the start of school--- Yes, we are 3 days into it by now and I could not be happier to get back into some kind of routine-- Summer is long when no one goes to camp and no one naps!!!

We took a quick day trip to Grandfather Mountain and everyone had fun-- It started as "we need to get out of the house because we are going to go crazy day"--- and it ended up to be a favorite spot for Grier-- He really liked the mile-high bridge and the bears!

About a week ago, we met with Grier's wish granters from Make-a-Wish-- I think he really enjoyed the visit and has no idea about his wish--- he says "Disney" one minute and the next minute it is a remote control helicopter that is on TV! We are going to wait to see if Disney is really his wish!! It is hard to explain to him about a "wish"-- We are hoping with time he will learn the concept and come up with something--- The visit was fun and I am sure exhausting for the granters, Deb and Chris--- Grier had Chris busy outside playing golf, soccer, and baseball and then brought him inside to play wii bowling -- He was asked a lot of questions about his likes and dislikes-- As you all know all of that could change tomorrow--- That is the great thing about being 4-- So.. as you can see we are taking it slow to make sure Grier chooses something he wants-

The CureSearch Milestones walk is coming along--- It is going to be great and HUGE!!-- lots of fun things for families to participate in while raising awareness of pediatric cancer in our community--- I really thought I would have a full team by now!! I guess with vacation and school starting --- things are slow--- You all still have time--- If you want to make a team of your own that is fine too-- the more the merrier! Go to www.milestoneswalk.org to register--- This is an event you do not want to miss! This a not a competitive 5k-- so all abilities are able to participate--- And if you do not live in Charlotte you can join GGG as a virtual walker! Each team will wear their own T's--- so if you have a GGG T--- you have to join the team! If you do not--- Kerri still has a few-- email her if you want one--rnorwood@comporium.net

Also-- There is a 5k Fall Festival at Myers Park Baptist Church on Sept 6th--- go to www.cornwellcenter.org for more info--- All proceeds will go to Charlotte's Ronald MacDonald House--- I have tried to attach the brochure but can not figure out how to do it--- Anyway, This is a great cause that is near and dear to our heart due to the amount of time we spent in the Ronald in NY-- not quite sure what we would do without it!--- so we are excited Charlotte is getting one for families that are treated at LCH and Hemby--

More to come later-- my carpool duty is calling!!!

How is Grier doing???

OK-- I know most of you check this blog to see how Grier is doing-- and I have forgotten to post that the last few times so I will try to catch everyone up!! I promise I will not do too many PSA's on this post!

Grier went to the clinic last Friday just to have his port flushed-- I say "JUST"-- but actually it is a big deal if you have ever had to watch it-- I told him in the morning after breakfast-- because I knew that would ruin his appetite--- He started to ask lots of questions and we put the "magic cream" on his button--- I know-- some of you have no idea what I am talking about-- but anyway-- we ( all 4 of us)-- headed to the clinic and the discussion in the car was about being brave-- Mostly led by Hayes--- which I know amuses some of you-- :)-- Grier was a little more relaxed and not so anxious so I was hopeful this would be a quick trip-- Grier has a game face -- I guess we both do at this point-- he tends to be shy and ignore people and I tend to have that "grin" on my face! They called him back and the nurse came in with all her supplies-- Grier sat on my lap-- and clinched his face into a "grin" and it was over---Yes... we made it with no screaming and kicking! I did have them draw a tube of blood so I could send it to NY for HAMA #'s-- I was relived and started to pack up and then....GRACE--- said she didn't feel good-- I looked at her and she had no color in her face-- Our nurse quickly got her something to drink and sat her down--- She was fine after a few minutes--- We had a few laughs about it later-- I had to tell her how many times I have done that in my life and she was OK with it!

This week we had to go back to the clinic for a doctor's visit--- really a check-up.... or --"this is what we have done in NY for the last few months and here he is in person kinda visit!!" Grier was so much more relaxed because he knew his port did not have to be accessed --- It made the visit entertaining for some--- I am not sure they have seen the real Grier in a long time! He has gained weight-- he is now up to 35lbs-- and grew a tiny bit in height--- I asked about it and I was reminded that Jeff and I are not tall--- really did not need that reminder-- KNOW that all too well! We talked about what we do NOW--- I am not a fan of sitting and waiting--- but that is what we are going to do-- Dr. M will call NY and see what the tests said about immunizations-- once again there are two schools of thoughts about re-immunizations--- so we talked out that-- I was reminded that we chose to go "the NY way" --( And if we had to choose again -- it would be the same decision!)-- And to sum up the visit--- he looks good! He has the green light to go to preschool-- and we will do monthly check ups in Charlotte- We will go back in 3 weeks and have a check-up and get his port flushed-- In Oct. (first week)-- we will go to NY for a full work-up-- So.. that is it on the medical front---

Just one bit of information regarding the CureSearch walk on Nov.15th-- I have had some questions about how to join the team online---- I think it is a bit confusing too-- so I hope this helps--
Go to www.milestoneswalk.org
click CHARLOTTE walk
go to join a team
you can put in the % sign and hit search and the teams should come up---
Then you should see Go,Grier,Go---- it has to be just like this or it will not show up
click join when you see the name
It then will prompt you to do a page-- I think it is $10 to walk and it says you have to have a minimum of $200 as your goal-- They will not hold you to this-- But if you or anyone plans to walk you must be registered-- Also-- for the friends and supporters that are out of town-- you can join the team as a virtual walker---

I hope that helps-- I know it still sounds confusing-
Thanks to all that are working on helping-- Posters are being put out and sponsors have been recruited!!
Enjoy the last fews days of summer break---
AVC

"Let me know what I can do to help"

You guys have said it for months.... So I am asking!

I NEED HELP-- I recently put information on the blog (www.gogriergo.com) about the upcoming CURESEARCH walk coming to CHARLOTTE @ Freedom Park on Nov. 15th-- I asked you all to join our team--- OR make a team of your own-- I also need help in other ways to support this event--

Here is what I need you help with--

1) SPONSORS--- If you know of a business that would like to SPONSOR this walk--- This is a national charity that supports children's cancer research--- We have two hospitals in our area that are COG hospitals (Children's Oncology Group)-- Levine and Presbyterian-
There are several different levels of Sponsorship -- Please think about businesses that you know-- I would love to see Bank of America, Wachovia, Target, Lowes, Carolina Panthers, Bobcats-- Possibilities are endless-- CHARLOTTE is BIG-- And it would be nice to show everyone that Charlotte thinks children are a priority- So.. if you have connections with ANY businesses in the area please encourage them to support this cause--- I have forms and contact information--Think Local and National ---

2) POSTERS-- I have a lot of posters that need to be placed around the Charlotte area-- Getting the word out about this walk is a huge priority--

BUT Amy... "we already support the American Cancer Society... and we plan to support the STANDUP2cancer cause on Sept. 5th--" -------
Well--- that is great but if you want to support children than you need to look closely at those causes and see how much goes to pediatric research-- ACS-- is a 2 star charity --($0.22 of every $1.00 the ACS funds goes to breast cancer. Colo-rectal, prostate, lung, leukemia and lymphoma all check in at $0.13 to $0.09. The lowest is childhood cancer at $0.03 for every $1.00 the ACS funds)-- Curesearch is a 4 star charity and 98 cents of every dollar goes to research of ALL pediatric cancers- Sept. 5th will be a huge media blitz about cancer but they are forgetting to partner with a pediatric non-profit group -- Strange... when this a #1 killer of CHILDREN-- And we wonder why there has not been a new cancer drug in 20 years for children--- We need to make it a priority just like breast and colon cancer are in this country-


But what about NB research?--- I am not asking you to choose--- Curesearch covers all pediatric cancers -- In September, there will be many ways to help NB research by buying cookies--- or holding bake sales---- Easy enough huh? I am excited about getting the word out-- but I quickly get disappointed when I ask for help and nothing happens or I get told that we do not like to adopt a specific charity because we can not tell one yes and then others NO--- well--- Now you know why things in the pediatric cancer world has stayed the same and why kids lose their battle---

Please think about where you work.. where your kids go to school or preschool or daycare--- where you worship.. different groups you are involved in... YMCA, YWCA... and encourage them to make or join a team-- or even go the extra mile and help by sponsoring, putting up posters, or helping the day of the event-
Thanks-- email me with any questions--
amychristenbury@carolina.rr.com

Save the DATE --

I wanted to let EVERYONE know that this first-ever event is coming to Charlotte on Nov.15th--

There will be so many ways to help-- !! Please save the date and come out to Freedom Park to support Childhood Cancer Research--

Go, Grier, Go!--- will have a team-- Please join it online--- I will send out an email in the coming weeks--

Please help spread the word about this event to all of your friends, co-workers, neighbors, businesses, church, schools, sports organizations, and family--- We have a chance to show how much the Charlotte Community cares about Children and PEDIATRIC cancer--

Grier's team--- go to www.milestoneswalk.org

Join the team by entering-- grier = username
gogriergo=password

OR make your own team ----

More to come soon--
Amy


FOR IMMEDIATE RELEASE

First-ever Charlotte “MileStones Walk” to Raise
Awareness and Funds for Childhood Cancer Research

Hundreds Touched by Cancer to Participate in November 15th Event

August 8, 2008 (Wilmington, DE) – CureSearch National Childhood Cancer Foundation will host the first-ever Charlotte MileStones Walk on Saturday, November 15 at Freedom Park, to benefit lifesaving childhood cancer research conducted by the Children’s Oncology Group, the world’s premier pediatric cancer research collaborative. The Children’s Oncology Group treats more than 90 percent of children with cancer in North America.

The MileStones Walk for Childhood Cancer is a fundraising event that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure. Directly or indirectly, nearly everyone knows a child or family who has been touched by childhood cancer, the #1 cause of death from disease in children. Every school day, another 46 children, about two classrooms of students, are diagnosed with cancer in the United States. MileStones walks emphasize fellowship and sense of community.

“We invite everyone in the Charlotte area to come out on November 15th and be part of the cure for childhood cancer,” said Sharon Sullivan, event chair.

“The loss of even one more child to cancer is one too many. The money we raise will go toward research that will end this disease. Fifty years ago, the cure rate for childhood cancer was less than 10%, now it is approaching 80%. But we will not stop until we get to 100%, and can guarantee every child with cancer the gift of a long and healthy life.”

“CureSearch thanks the Charlotte community for hosting this event,” added Stacy Pagos Haller, Executive Director of CureSearch. “It’s a great way to come together and honor those children and families who are affected by childhood cancer.”

Registration opens in Freedom Park at 9:00 am. Opening ceremonies and the walk begin promptly at 10:00 am.

For more information about the Charlotte MileStones Walk for Childhood Cancer, visit www.milestoneswalk.org, or contact Natalie Cole, National Events Manager, at (240) 235-2215 or Natalie.cole@curesearch.org.



# # #

About CureSearch

CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children’s Oncology Group (COG), the world’s premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,500 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.

I can not believe it is August!! Our time at home is flying by as well as summer! -- I guess because we are staying so busy--- The kids and I went to HHI with the Caldwells last week- Jeff came down for the weekend to enjoy the craziness! - As you can see from the pictures Grier had a great time-- He took his last Accutane pill ( hopefully!) on Sunday and we were very careful when were out in the sun-- it did not take long for him to burn even with SPF 70-- I think we spent more time applying "scumscream" than actual time in the sun-- Oh Well!-- we made it all week with skin intact and not burned-- Before we went, he WAS a little cautious around water but after this week I can safely say he will need some swim lesson ASAP-- He was crazy in the water-- trying to copy everyone he saw--! When we asked him what his favorite part was-- he said... The boat ride (we went on a dolphin watch), The Deer Hunts ( a Caldwell tradition!), Putt-Putt, swimming, bike riding, and going to the beach and seeing some "star fishes"--- as you can see we were busy! So busy that for a brief moment we almost forgot about the last year! I did lose a little sleep when he woke up at 3am and threw up-- but he quickly fell asleep and I just waited for more--.... he ended up sleeping until 10am that morning-- who knows WHY?-- but it does bring back memories of how all of this started- And of course-- I was reminded when my phone rang and it was Memorial Sloan- Kettering....My stomach almost dropped because I had no idea why they would be calling--- All they had to tell me was that we are scheduled for scans the week of Oct. 6th---Ahhh! Didn't they know I was on vacation from all of that!

This week-- we need to go to our clinic here in Charlotte-- I think I will have them do a HAMA blood test so we can send it off-- just to see if his numbers have decreased-- I also just want to touch base with the Doctors here so we are all on the same page-- That is about it on the medical front--

Thanks to all that donated to The Band of Parents--- Since I have some downtime now-- I am going to be working on getting the word out ( you may get sick of reading soon!!)--- Pediatric Cancer Funds need to be raised-- I am also working on some other things and have been offered some help by Senator Rucho-- NC can do more for families dealing with this-

Thanks for checking in on Grier--- Please remember our friends, Isabella and Liam, who are fighting really hard right now--

Want to help make a change???

I wanted to share a new site I became aware of through the BAND of Parents..... It is called www.change.org. The Band of Parents are hoping to raise $25,000 just by reaching out to NB parents and then they reach out to their support network, and that support network reaches out to their friends and family--- Sounds easy enough doesn't it???? I put it on GGG a few days ago and forgot to even mention it and our total is at $450- I would love for everyone to forward to link to people they know and challenge them to make a $10 donation to support NB research at MSKCC-- Let's see how fast the $$ amount grows-- It is kind of like a chain letter that we email around all the time!

There are new treatments coming soon at Sloan-- most for patients that have relapsed but this money will help the dedicated researchers save some children-- So.. Ready, Set, .... EMAIL all your friends and pass the challenge on---

You can click on the buttons below or copy and paste this link---

www.change.org/myfundraising/gogriergo

Praise and Prayers!

I had to post this cute picture of the lemonade stand that these kids did all by themselves-- They did a great job-- Thanks Everybody!!


Grier finished a whole week of VBS-- he had a great time-- He brought home lots of stories about what happened during the day and I enjoyed every minute of it-- I even had more information ( a little too much at times!)-since Grace was with him all week-- While they were gone, Hayes and I were busy purging the attic-- At one point it looked like we were moving!! But it feels so good to "clean house " of so much clutter that had been ignored for 1 year!

I loved reading every one's excitement over Grier's latest test results-- It is a milestone-- I was looking at pictures on my computer and Grier said, "Hey .. who is that?"-- I told him that is you! Well-- he did not recognize himself without hair!! He quickly changed the subject and asked some other question!!

As we try to enjoy the next 90 days off treatment -- I still have a sick feeling when he says "my head hurts" or "my tummy hurts"-- knowing more often than not it is a normal childhood ache but remembering he is still a NB survivor and we are going to be living in 90 days intervals for a long time-


I do not normally post about kids we know-- but I had so many emails about this little boy last Fall when we were going to MSKCC for the first time-& I also received so many copies of the article in Parent's Magazine that showed a day in the life of Liam going through the all too familiar procedures at Sloan-- so I thought you would like to know.........
I would like to ask you all to say a prayer for a family that we have met-- and I am sure some of you remember him on TV ( GMA & CNN etc.) --his mom did the Cookies for a Cause campaign last December-- 96,000 cookies and $400,000 for research at MSKCC in two weeks ( and Liam was still in active treatment at the time!) and Parent's Magazine-- Liam Witt is a 4 year old whose story is just like Grier's-- he was diagnosed a few months earlier-- and basically was a text book case for NB-- He went through all treatments at MSKCC-- had surgery, radiation, and the optimal rounds of 3F8 before he HAMA'd - showed NED multiple times and he was there doing his 3 month scans last week with us and the CT scan saw a shadow above his kidney- After several extra tests-- the MIBG, PET scan, bone marrow, and urine were all clean, but there was still a small shadow that no one could explain-- so the NB team decided not to take any chances and go in surgically and look to see if it was scar tissue from his previous surgery-- And unfortunately it was not-- he had a dime sized tumor in the original location and it was NB-- It was removed yesterday and he is recovering-- He will begin a new treatment plan next week-- This is a strong family that is not only fighting for Liam but for all NB kids through their work with the Band of Parents-- And once again we are reminded that life can change in a minute without any warning-

Three Letters!!

NED-- ( No Evidence of Disease)!

All of Grier's test came back and there is no sign of NB-- we are very thankful but still very cautious -- I hate to be that way but we have seen how sneaky NB can be---
We will continue to go to NYC every 3 months for a full work-up for the next several years-- It is bittersweet that he is off 3F8 at the moment--he will no longer have to endure those painful treatments due to the fact he is HAMA positive. He will finish accutane on July 27th and after all that we just wait and see what happens-- So.. for the next 90 days he will hopefully be as normal as any other 4 year old-- enjoying the rest of summer, starting school in the Fall and loving just being 4!

Thanks for all the prayers --

"Happy to say all scans show no NB!"

"Happy to say all scans show no NB!" This is the email I got from Dr. Kushner today! It was short and to the point but that is all I needed--
Now we just wait for the bone marrow and urine tests to come back-- It usually takes 5 days--

Grier had a blast at VBS-- Grace was with him and she loved being a helper--- Tomorrow I may leave -- it will be the first time since March 2007 that I will have 3 hours to do something!! Hmm-- what shall I do with all that time!

Home again!

We woke up very early this morning (5am)-- and got ready to leave-- we had to clean our room quickly and pack up the sheets and we were done-- we had not even been in the room 24 hours!! I hate that we got a taste of what it was like to stay at the Affinia--- that was nice and we had some room to spread out-- and we did not have to clean to leave!! Ahhh-- but the RMDH is home to us and to so many we have met --so that is our first choice--- and it is $35/night!!

Our ride picked us up at 6am-- we rode with another family from Ft. Mill-- They had just recently moved from FL and were here for scans as well-- They have been fighting this fight along time-- 4 1/2 years-- wow! She has done so many protocols developed by Sloan and on some she was the first to participate-- it was very interesting to talk to her and learn some things--

We made it to our house by 11-- and had a low key day-- Around 4 we headed out to Grace's swim meet--- So-- we are back in the full swing of things already-- H, G, & G-- have enjoyed the afternoon wrestling and playing-- and in between screaming at each other-- Grier would occasionally remind them that he is SO glad to be home!!

Grier is going to attempt to go to Veggie Town this week -- ( Vacation Bible School!!)--- He has talked Grace into helping in his room so I can not wait to see how that goes--- I think it will be fine-- especially with Grace --but we are starting cycle #6 of Accutane on Monday and you never know how that will change his mood!

I will update as soon as I hear results-- I believe they have to be good-- he looks and acts so well-- but I know that things could be going on inside his little body-- so we can not just rely on outward appearances!!

Done with the Work-up and at the Ronald!!

We are finally at the Ronald--- we tried to check in several times today and after three tries were are in a room-- no... not 810!

Grier did great as usual during the wait for the MIBG scan... waking up from anesthesia... and bone marrows-- We are done with all tests and now are just waiting--- the hardest part for us! It might not be until Monday before we hear anything-

I think being around MSKCC changes my mood a lot-- there is so much sadness here-- as well as hope and determination to beat cancer-- The more time we spend here -- the more people we meet and see how NB has affected their lives-- The most common thing is that things can go from good to bad in a second--- so it makes you try to enjoy every second while you have it-

Tonight will be low key--- we have to get up very early and check out and head to the airport--- Thanks for checking in on us this week--

Gosh-- where do I start? We have been so busy today-- mostly with fun things!! We left our hotel room and went to breakfast-- I think it was called "Eat Here Now"-- the usual NY diner with a catchy name!-- Then we headed to 42nd street-- on the way we were noticing lots of statue of liberty look-a-likes-- (each were painted with a different baseball team)-- So, Grier and I were on a hunt to find them-- it made the walk go by really fast-- They were on display for the All-Star Game that will be played here next week-- Anyway, we found a lot of them--!! I have pictures- but they will have to be downloaded when I get home-- I do not have the cord!

As we were walking back from 42nd Street-- we stopped in Toy R US-- and Grier wanted to ride the Ferris Wheel--- this is a first for him so I was excited he wanted to try it! We went into a great popcorn store-- Garret's on 5th Avenue and Grier got popcorn--- We continued to walk back to our hotel on 64th street and Grier fell asleep-- so we came up to the room for a quick second before we had to leave for our 2:00 appointment--- We waited a long time for our quick radioactive injection and then headed up to the PDH to sign consents for his Bone marrow test tomorrow-- It was almost 4:15 by the time we left !!! We saw Dr. Kuschner in the hall and stopped and talked to him a bit-- we asked if the CT/MRI was ok and he said he had not heard so he is assuming "yes"-- He said if something looks out of the norm they call him immediately--- Let's hope this is the case and our MIBG will be as good!

As we were leaving we an into our Social Worker-- she could and could not believe what happened in regards to our reservation at the RMDH-- this happened to 6 families this week-- She did suggest to us that we turn our receipts in to her and she will see what Sloan can do-- since the RMDH was overbooked-- I will --but also will not hold my breath-- but I guess at $400( medical rate!!) a night anything will help! We are booked for tomorrow at the RMDH-- it will be a short stay because we are leaving at 6am on Saturday--- I also asked for help in dealing with USAir-- I booked our reservation last night and used a credit I had when we had to change dates due to a cancellation-- they charged us $100 change fee per ticket--- and I talked to three supervisors pleading the case of medical reasons for the change-- they said that is not a valid reason for their company-- I hated to even use the reason-- Our social worker said she had never heard them say that before-- but since all the cut-backs everything is changing-- Even corporate angels have made lots of changes and it is worrying her--

Since we skipped lunch-- we went to an early dinner and Grier must have loved the pizza at Patsy's-- I have never seen him eat so much!! We ended up walking MORE--- Grier wanted to go to Dylan's Candy Bar-- He got a FUN DIP and has enjoyed it so much!!! I love walking in NY during the summer-- these days are LONG-- and the weather has been pleasant-- I did give a few NY'rs a flat tire today with my stroller--- they just stopped in front of me and I did not notice!!!- Oops!

We are back at the Affinia ( nice hotel --by the way!!) and getting ready to pack and settle down for the night-- I am going out one more time for a water run at the CVS around the corner-- Grier will be NPO ( no food or drink)-- after midnight since he will be under anesthesia tomorrow-- and he wants a snack-- !!

Grier said-- Mom.. we are going to be staying at 3 buildings this trip!!! He is right--- and the third and final move will be tomorrow after our procedures at the Hospital --

So-- lots of prayers tomorrow that nothing "lights" up during the MIBG scan-------And that there is a room at the Ronald!

OK-- we can start checking things off-- urine collection-- DONE ( a very LONG four hours!!)--- MRI of the brain and orbits-- DONE ( 1 HOUR LONG)----CT of the abdomen , pelvis, chest-- DONE (15 minutes)--- Tomorrow-- all we have to do is the radioactive dye injection---@ 2:00 ???! And Friday is the big day-- MIBG scan.. bone marrows and possibly the first set of immunizations---

We met with the NP-- she looked him over-- he weighs 33 lbs! Talked about HAMA-- he is positive again-- his number is 6000--- it needs to be below 1000!! So, we will keep checking every month-- still no answer on what will happen if he becomes negative again-

Thanks for all the emails-- I guess you can tell I am stressed-- and the hotel situation did not help-- We checked out of the Helmsley Medical tower today around 8am and left our bags there until we were done with scans--- Around 1-- we walked back and headed up to destination #2--- and there was a mix up in the reservation- no I am not kidding! I think this may go down as the worst NY ever! - After a long conversation-- we got a room here for tonight and tomorrow--Guess what? We were in room 810 last night at the Helmsley and tonight we are in 810 at The Affinia-- weird huh? I told Jeff we should go get a lottery ticket with 810 on it!! We had lunch at Jackson Hole-- I had to tell Grier that Mrs. Leary wanted him to go there because he wanted Wendy's (grrrh!) -- It is right across the street from our newest hotel-- and the funny thing is that we looked all over for it in our previous trips!
On Friday, we will probably be at the RMDH-- Flights are booked! I am still going to call but it looks like it will be Saturday-

That is it for now-- we will sleep well tonight!! The room is nice and quiet!

ps-- We did make it to FAO today-- Grier made a custom HOT Wheels car-- I will post a picture soon- Retail Therapy right? or just a FOOL!!! That is the funniest concept-- you pick your car on a computer... choose a color.. wheels.. and an engine... and then it shows it being made on the screen--- about 3 minutes later-- the car comes down the shoot in a little clear box!! I thought it was going to be really CUSTOM--name etc.-- it is basically a hot wheels in a plastic box for 20 times the price!
The apple store is right beside FAO and I told Jeff-- that we did not need a room-- we could just line up with our lawn chair with the 8 (so far) and camp out and wait for the new iphone coming on Friday!! I think he said-- Are you crazy?--- :) I may be cuckoo by the time this is all over!!

Well-- I should start by saying I have calmed down a lot before writing this post!

Our day started as usual-- busy with 3 kids, trying to pack, and passing off the torch to my mom so she could take over for us for a few days at our house!

Our flight was fine-- delayed a little but fine-- and Thank God FREE! We arrived at the RMDH a little later than normal and Jeff immediately left to go to the hospital to get our bag of "goodies" (no-- not anything fun-- SSKI drops!!( the worst 7 drops one will ever taste!)-- a urinal... a contraption to keep the urine in-- and the contrast that Grier has to drink tomorrow at 6:30 am!)-- I went in to set up our room-- and then we were going to go to dinner-- Well--- There was a problem--- NO ROOM AT THE INN~ I said.. WHAT?-- I emailed yesterday to let you all know I was not coming until today-- and they did not get it so they gave our reservation away today-- NICE-- I asked-- Why did you not call?-- ( They have all of our numbers!!)-- Oh-- "We do not do that!" OK-- So,-- I was too mad to cry-- and they were NO help! I asked for numbers of HOTELS around the hospital--- and they did not have a suggestion-- And I am getting really mad-- because they had no compassion-- I was not there for a vacation-- So, I called the social worker-- she gave me some numbers to call-- meanwhile I am on the phone in the lobby and Grier is getting upset and wants to go HOME!! After a few calls-- I found a room for tonight-- packed Grier and our luggage up and attempted to walk to the hospital to get Jeff-- did not get too far!! Way to many things to manage-- we waited outside of the RMDH until Jeff got back with our bag- While I was waiting outside the lady that gave the reservation away said-- Did you find a room? I said yes... and she said was it expensive-- I almost said *#% woman does it really matter at this point-! But I did not! So-- long story short-- We are not homeless tonight-- we are at a medical hotel across from MSKCC-- and tomorrow we will have to check out-- schlep our bags to the hospital while we are there for a full day of scans! After we finish we will go to another hotel -- about 9 blocks up and we will stay for 2 nights-- And I am trying to come home Friday night-- The RMDH does not know when they have an open room -- so instead of staying Friday night at the $$$$ room -- we will just come home on USAIR--!

Yes -- I have learned a lesson-- I should not count on things going smoothly-- I will call ahead and check myself-- I will just add it to the rest of the stuff I had to do yesterday! But the RMDH should call someone before giving away a reservation that someone has had for over a month-- courtesy to say the least-- and they need to remember why these families are there-- NOT VACATION--!

We are now in the midst of the 1st hour of the urine collection!!! We will be done around 11pm! We lost a lot of time trying to find somewhere to stay and this is the best day to do this test!! Just bad time of day!!!

We are suppose to be at the PDH-- around 7:30-- but our procedure is not until 11am! Why so early? Well-- the 9th floor is crazy-- sounds overbooked and we will be waiting to get a slot to get cleared for anesthesia!-- His MRI and CT will be around 11am-- under anesthesia-- so we should be out of the hospital by 2-- to check-in to our new room!

I always say-- tomorrow will be better and it better be --- or at least easier! And I guess we can forget getting Mets tickets from the RMDH-- oh well-- I know we will be here for many more games! Cancer SUCKS!!!!!!!!!!!!!!!!!!

Jeff, Grier and I will leave tomorrow around 1:00 and head back up to NYC-- we waited as long as we could and it paid off-- corporate angels came through wiht a flight today--
( with a little inside help --!) We do not have a return flight home yet-- but I hope to be home by Saturday -- we will see!

I am packing and getting ready-- It is easier now that it is not cold in NY !! I hope Grier has a few good days this week-- the last couple of trips were for 3F8-- and he was not feeling good-- Maybe Thursday- we can get him to a baseball game!- I think the Mets are in town-

Thanks for checking in--

Well- Since it is JULY 1st--- I thought I better update!! Summer is flying by!! We had a great time at the beach last week--- I think I could have stayed a few more weeks-- you can not beat waking up to seeing and hearing the ocean! I still can not believe how different this year was-- Grier only had to take Accutane 2 times a day (he was very proud to show everyone how he can swallow a pill too!!) Last year, he was IV antibiotics every 8 hours-- IV nutrition... and other meds--- a port that we wrapped every time we went outside--- ETC. !!! Sunscreen (aka "scum scream")-- was the main issue this year-- and we made it without being burned!! And the only medical emergency was for Jeff!! Yes-- we had a 911 call and they came quickly and checked him out--- he is fine now and seemed to have a quick virus??? Who knows-- ! Never a dull moment!

Before we left for the beach-- we were busy with swimming and baseball--- I was making arrangements for our next trip to NY-- and a referral was made for Grier's Make -A- Wish trip! Exciting huh? Hayes and Grace are trying to talk him into Atlantis-- and he is set on Disney-- We do not have a date yet-- and it all will depend on the treatment plan that we follow next-- AND when we can take more time off from working!!

We will head to NY next week for scans-- this time they have added a MRI of the brain-- I was a little thrown off by this at first but after a few questions I feel better-- NB Relapse happens often in the head/brain and they have started doing this MRI every 6 months so they can kept closer tabs on the area--all the other scans will continue to be every 3 months-
So-- He will have an MRI and CT scan on the Wednesday-- then on Thursday will have his MIBG injection and on Friday-- it will be the MIBG scan with bone marrows- I hope we will go on Tuesday-- but I am not sure yet! I hope to be back Saturday morning-- the worst part is we will miss the All-Star tournament that Hayes is playing in!!

We went and had the HAMA test done yesterday at the Charlotte Clinic-- and the blood is on its way to NY-- I am not sure exactly how much it matters --BECAUSE we found out that since he has gotten four rounds of 3F8 -- this may be it for the current protocol he is on! I know some of you are confused but there are a lot of different 3F8 protocols-- we started NED ( no evidence of disease)... it was he first remission ... and he tested HAMA positive before round 4-- So, hopefully our scans will be good... NED! And the team will meet to see what to do next- He still has one more cycle of accutane to complete too- Not only do we have the anxiety of scans next week but also waiting to see what is next!

I am sure I have forgotten lots of important information!--- There are some people I would like to thank-- Kim R.-- for the gift and the anonymous gift that was given to us by Ted ( Jeremy's Dad)! Please tell them thanks from all of us!

There are still lots of magnets left--- Anyone have any ideas how to get rid of them???! And a few T-shirts!

That is it for now--- I will update when I find out our plans for next week!