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!

Update coming soon--- still on Vacation!

We made it home --- and we had an eventful day!! Grier's 3F8 treatment went well--we got to MSKCC at 7:50-- I was expecting an easy day but it was about the same as the rest of the week-- lots of pain and hives-- He also had the same reactions to the GM shot ( this shot increases his white blood count)--lots of welts at each injection site--

We left the hospital at 1--- walked back and he rested for a little while I made trips down to the lobby to drop off our bags and check out! Our ride came at 2:30--- and the real fun started.... the driver asked me where Morristown , NJ was????-- I had no idea!! I called Corporate Angels they said they did not know how to get there--- and I should call the airport--- So, I did and got some directions-- I was a little worried at that point--- THEN--- we were stuck in traffic on 5th Ave. -- the street we were going to turn on was closed-- so after 25 minutes we ended up back on 72nd and 1st-- 1 block away from the RMDH-- The driver asks what time I need to be there and I said 4pm-- and then his road rage started-- FUN!!! He was driving like a NY taxi driver-- and honking the whole way to NJ -- we finally made it 15 minutes late!! I guess it was good that he was going 80+ on the NJ Turnpike--- or we would have been even later!

Our flight was great-- thanks to BOA for giving us a ride home--

Grier and I are very happy to be home--- We return to NYC the 2nd week of July for the dreaded scans!!! I am going to try not to think about it until it gets closer-- On Monday, he starts the 5th cycle of accutane--- and that is it!! He had a test done and he no longer has to take bactrim to prevent a type of pneumonia --- but the tests also means he is ready to be immunized again ! The first set will be done in July-- but it is starting over-- so it will be a process just like a newborn goes through-

That is it for now--- off to unpack and sleep in my own bed!!!!

We just got back from the hospital!! We are done with 4 rounds of 3F8-- and today was very different! He went through the entire 30 minutes w/o much pain--(just a request for a hot pack on his tummy)--- then the 20 minute flush started---after 5 minutes-- he was uncomfortable -- then the hives popped out on his arms and face-- then he had lots of pain---! I know I sound excited to see pain but he needs to have some reaction to know it is working-

We are going to the hospital in the morning--- we have a flight in the afternoon and a nice family said they would switch with us so we can make our flight home!! We will be on a tight schedule but if all goes well-- (cleaning, packing, checking out and the 5th round of 3F8 -- etc.) We will be home in Charlotte by 7pm!

Grier is resting right now-- his face is just as swollen as yesterday-- looks like he had his wisdom teeth pulled--

Hopefully, the next update will be from home-- Thanks for checking in!! We are surviving very well in NYC together-

ps-- His ANC came back and he is not nutrapenic-- they said it drops on Wednesdays of treatment and usually rebounds the next day-- So if he wants a turkey sandwich he can have it!!

Today was much like the other two days--- except his pain was in both arms instead of both legs-- He slept for most of the afternoon-- woke at 5:30 and we walked back to the Ronald-- We did have a visitor today-- Jeanna was here on business and she came to visit at MSKCC-- walked back to the RMDH with us-- we hung out for a little bit then -- walked to Crumbs! We got something for Hayes' birthday-- Thanks It was nice to see her!! Grier was out for all of it--- and now he has a HUGE headache--!

The other news of the day is that he may be nutrapenic-- GREAT!! We will know for sure tomorrow when they draw labs again---So-- We need to be careful-- no deli turkey for him tomorrow until we find out for sure!!

Tomorrow-- we will go at noon again! Afternoon schedule is nice because he is alert for most of the day---but it makes a long day of waiting for what is to come! We may have a flight home on Friday-- I am waiting for Corporate Angels to let us know-- If we do... I am trying to get us switched to morning shift so we can make the flight-

2 more days to go--

*** Last week the PDH held their annual prom for the kids-- it was on ABC News World tonight--- very cute story! There are a lot of familiar faces in the video--- Recently, Sloan was ranked one of the top Children's Cancer Hospital-- watching the video will help to see why!!!

Cancer Patients Celebrate Their Lives at Prom
http://abcnews.go.com/Health/story?id=5040470&page=1

We are back at the RMDH--- today was almost as long --- and the pain was just as bad-- he had 2 larger dilaudid pain rescues today--- and almost got a 3rd! The Dr. is pleased with pain like that-- as he said... it is good to see him in the morning acting like nothing has happened and then to have pain like he is having means the antibody is doing something!! Let's Hope!

He is slowly coming out of his narcotic haze-- I would just like him to sleep normally tonight!! He went to sleep at midnight last night and was up by 3am-- telling me he could not sleep anymore!!! He fell back asleep at 5:45-- !!

So far -- Grier and I are fine in NY by ourselves-- we are so used to this it has almost become an easy transition--- The staff here is so good -- I am certainly not the first to do this w/o another adult-- people do this everyday-- and some live here separated from their families for a long time-- You do what you have to do!! We are missing Jeff -- but some of us must work!!

We are missing a lot at home--- the last day of school-- I have missed that the last two years!! Hayes and Grace seemed very excited about school today-- report cards were great-- and they got some awards-- not sure what kind yet-- hopefully I will find that out later!
Thursday... Hayes will turn 11!! He did tell me he would like to wait to celebrate his birthday when I get home!! That was nice--- I am feeling guilty that I am missing that too--

They had a little b-day party for Grier at the PDH today-- they had an ice cream cake and a couple of presents--- he did not want cake --- but has enjoyed the basketball game they gave him-- and a "REAL" baseball--

That is it for now-- I need to figure out what he wants for dinner-- if anything!! And I need to figure out the A/C in the room--- we are HOT!

Thanks for all the posts-- they are fun to read--- Do not worry about walking around NY-- I think are almost "NEW YORKERS!!" WE got stopped for directions the other day!!!!

Today started BRIGHT and early--- around 6am!!! Not bad unless you go to bed after 12am!--- Grier fell back to sleep for another hour and then... I woke to " Can you turn that down?"-- I am assuming he was talking about the street cleaners-- the loud motorcycle that drove by etc.!!! We left the RMDH around 9-- he chose Lenny's for breakfast--- surprised? Well-- I was when he ordered a turkey sandwich!-- I didn't care-- because I knew that was going to be the best meal for him today-- I tried to walk around NY but it was too HOT-- we went back to the Ronald-- and hung out and waited to go to Clinic--- The hardest part of the day was the anxiety he had about what we were going to do at the clinic--- he was worried about the shot-- being accessed and the list goes on-- the finger prick is always at the top of the list!!!

We finally got there at 12:15--- and I heard the morning shift had not started yet-- so we hung out in the playroom!!! Yes-- you heard me right!! The germaphobe went into the playroom! After trying to figure out a game on their wii-- we were called back to be cleared for 3F8-- they said he looks good--- Grier cried the almost the whole time--- occasionally telling Ursula about something-- HOMERUN derby... his Birthday etc.--- but he was tired and not used to doing this-- it has been since mid-April! He has gained weight-- and gotten a bit taller!! After all the talking--- we checked in with Kasey-- our nurse for the day-- I told her I needed help to give the GM shot-- and she did it for me and accessed him--- not fun-- he hates both--- but something we have to do! He fell asleep soon after all that-- and around 3:30-- we finally started 3F8--- He had LOTS of pain---he woke up 15 minutes into and his pain lasted 35 minutes-- he did get sick and I called for help-- Kasey hung out with me until the flush finished! He recieved all 4 rescues today-- which is a first-- tomorrow they will change it up a bit due to his increase in weight--

We left around 6-- walked back and he slept a little while-- he woke up in a fairly pleasant mood-- and we went to the playroom at the Ronald-- yes-- I said that AGAIN-- and played the "boat" video game-- I have tried to talk him into eating but he is not interested-- he did want a coke-- so we took a walk to Duane Reades-- Gristedes ( the closest grocery store has closed!!) Right now, he is awake--watching a movie and having residual leg pain-- I am shocked he has done so well since today was so hard! The one good thing about today was he was able to tell us exactly what was hurting-- so we could put hot packs on it-- and he even asked for medicine-- all while he was doing his breathing exercise-- It must be because he is 4 now! :)

So-- we are done with the first day--

Greetings from the Ronald--

We have had an eventful day!! But what fun would a 4th Birthday be without things to do and places to go--- especially NYC!! AHHH!

Grier enjoyed a brief birthday celebration-- he opened a few gifts.. had the first cake of many-- and enjoyed being sung to by Hannah Blanton and friends at church--Mrs. leary... and Anne and Mac-- Grace said that he got more phone calls than me today!! He likes to talk on the phone!!

We left Charlotte around 5:45--- we were going to land at 8 at West Chester-- but we had some weather delays-- and did not make it to West Chester after all--- ended up in Teterboro-- and had to reroute our van that was picking us up to take us to the RMDH--- We finally made it at 10:30!! We left the RMDH and went to get a slice of Pizza-- go to the grocery store to get a some water and our Gristedes was closed!!! I still can not believe Grier and I were out walking first Ave at 10:45!!! Crazy!! It is now-- 11:45 and Grier is still up!!! What a crazy day---

I can cross this day off the countdown--- Grier and I made it to NY and are in our room and ready for bed! Yes-- It is almost midnight!!-- I will update tomorrow-- it will be late -- I am sure!

We have a plan!

We have ended yet another CRAZY week--- I know... 3 kids makes most weeks hectic!

Grier and I will fly out Sunday night-- thanks to Corporate Angels again! We should get to the Ronald by 9pm-- Jeff and the kids will stay here so they can finish up school, go to their awards day, swim and just begin summer vacation! We do not have a flight scheduled to come back to Charlotte -- but I am hoping to come back Saturday or Sunday-- Grier always gets excited about going to " NEW YORK CITY"-- he has made his pile of what he is going to take-- "grey" cat is on top! Occasionally, he will asks-- "why" are we going to NY again? And I tell him we have to get some medicine to keep you healthy-- and he says ... what kind? And I tell him the kind you get when you hold the "blue tube" (oxygen tube!) every day at the hospital! And he says--"OK"- Our first roommate called 3F8 the "hurt medicine"--She is a little older-- and looked forward to each morning... getting the "hurt medicine"--That is how routine this therapy is to the kids- and the fact that Dilaudid must be a great drug! I am sure as he gets older he will not be happy with my simple explanation of what kind of medicine--

Monday might be the longest day ever-- we are doing something a little different-- we are going to be on the afternoon schedule for 3F8--- it just means we will have to be at the hospital @ 12:15-- instead of 8:30--- Mondays are always long due to waiting for tests and recovery time and we usually leave around 4-5 so who knows what time we will finish when we start well after 1pm!

I think a lot of people loved the lemonade stand idea--- I think I like it the best because it empowers kids to help--- and the funds actually go to a children's cause--- A lot of times kids are raising money for adult causes---! The website is great-- you should take a look at it if you have time- There will be a stand on our street-- sometime this summer---! Grace loves to sell lemonade!

That is it for now-- We have a busy and HOT day planned at the ball field-- and I have to pack a little too--! I am hoping that NYC is not as HOT but I have been told not to count on it--- those buildings and all that concrete hold the heat !!!!

**ALSO** Lots of GGG T's are being spotted around town--- and I am enjoying hearing where and who was wearing them!! A huge THANKS to Arboretum Pediatrics--- I hear they all wear theirs on Friday at the office!!! There are a FEW extras in most sizes--- if you want one email Kerri-- rnorwood@comporium.net -- They will not be reordered so act fast if you want one--

One cup at a time!

Did you hear about this great fundraiser on the radio? I have been asked quite a few times about Alex's Lemonade Stand (www.alexslemonade.org) and think it is a great way to bring awareness and money to pediatric cancer-- Who does not like to hold a lemonade stand in the summer? I went online to find out if there was a "grand" stand in Charlotte, NC--- and could not believe there was not one! ( maybe next year? !) The closest is in Fort Mill, SC and it is this weekend--- so if you are in the Baxter area-- check it out- See article below--



Taking a Grand Stand Against Childhood Cancer
Submitted by Gillian Kocher (Alex's Lemonade Stand Foundation)

Baxter Families Host Grand Stand in Fort Mill , SC...Alex's Lemonade Stand Foundation teams up with Country Time Lemonade

Families in Baxter Village will host their very first Alex’s Lemonade Stand Grand Stand presented by Country Time during the 5th Annual National Lemonade Days weekend on Saturday, June 7, 2008 at 10AM-4PM, 951 Market Street , Fort Mill , SC . The Baxter Grand Stand is a collective effort of three families who have each personally been touched by childhood cancer. Brad and Lorie Lower's daughter, Louise; Geoff and Heather Lux’s son Austin; and Scott and Jennifer D eNobile’s son, Vincent were all diagnosed with neuroblastoma, a type of childhood cancer. The fact that Louise, Austin, and Vincent are all healthy is nothing short of miraculous, and the families continue to look for ways to fight the deadly disease, ultimately leading to better treatments and cures.

Lemonade Days is a three day national event that grew out of Alexandra “Alex” Scott’s front yard lemonade stand, and is held every year over the same June weekend. During Lemonade Stand, dedicated volunteers host thousands of Alex's Lemonade Stands across the country, raising over $1 million for childhood cancer research in one weekend. June 2008 will mark the 5th Annual Lemonade Stand with an estimated 10,000 volunteers at over 2,000 Alex’s Lemonade Stands around the nation. It is set for June 6th, 7th and 8th . To date, Alex’s Lemonade Stand Foundation, a registered 501(c)3 charity, has raised more than $19 million towards fulfilling Alex’s dream of finding a cure for all childhood cancer, funding over 80 research projects nationally.

Update-

Well-- Here is the real story--- Sloan called this morning--@ 8:20am and said he was HAMA negative and we need to be in NY in a few weeks-- It just so happened it was the week of our vacation-- so I told them it would not work that week-- I already had scans planned around it and told them we would not be in NY during that week -- Well-- after being told the schedule was set-- I just had to wait and see--I waited almost all day and got the call that said it will happen next week- We will leave on his birthday to head to the Ronald and he will have 3F8 treatments all next week-- I will begin giving him shots today!

It all worked out -- I guess-- We will miss a ton next week because of all the year end activities-- & Hayes turns 11 on the 12th-- !

Now-- I need to figure out how to get to NYC! I am sure I will update before we leave or on Sunday when we arrive ---

Grier is HAMA negative--- Which is good--- BUT there are some scheduling issues that I am having to deal with today--- without much control! I assumed we would go Monday-- but that was not what they said-- so I am in a holding pattern today trying to get them to change the schedule--- I will update as soon I know when we will go to NY again-

What a day!

So many things are winding down because summer vacation is almost here but there are so many things that need to get done right away (forms to fill out, projects, etc.)--- Today was a crazy day for Grier and I--- As I think about it now that he is asleep-- I can not believe he did so well with all that we did today--

Today was the last day of preschool--- I truly think he will miss going. He looked forward to going and talked about what he did that day for days after!
After school, we went to clinic for a HAMA blood test--- not a favorite activity for either of us-- he got through it with only a few tears-- Sharon, Dawn and Jennifer were trying really hard to distract him-- but he is smart enough now to remember what will happen after the "magic" cream aka lidacane goes on his port-- We went to lunch... lost the parking deck ticket--- jumped through CMC red tape to get a free pass to get out of the deck....went to Kinko's to mail the blood to NYC ( a new guy helped me so we will say a prayer it gets there in time!)...went to Centura to get forms notarized ( and met some really nice people that recognized my go grier go bracelet... see there is "power in a bracelet!"--- and then asked if that was "Grier"!! He entertained them for a little bit-)... dropped off a generic form of Accutane to exchange for the brand name version at Walgreens.... picked up Hayes and Grace... went to swim team ...... dinner.... gas.... and back to Walgreens...then sat in the parking lot on the phone with insurance arguing the cost of the accutane ($8 vs. $354.00)-- apparently the BRAND name is REALLY expensive and I have only been charged for generic in NY but always given the BRAND name! Any other time I would not care about generic but size matters this time--- Grier is 3-- he swallows 3 pills a day the size of a jelly belly-- the generic version is larger-- the size of a Mike and Ike or a Hot Tamale! So I am trying to reason with them and they really do not care-- So-- I end up eating the difference and telling the woman I will appeal it! I have gotten good at doing that-- :) Again it was one of those times-- I thought.. Did she just hear me say my 3 year takes this for a cancer treatment--???
AM I making you tired yet?????
I am sure a lot of you had this same day (maybe with or w/o the medical drama!)-- I did think a few times that May is like December--- it is hard to slow down and enjoy the end of school when there is so much that has to be done--- And since cloning is not an option --- I guess we all continue to do it !

We should hear from MSKCC by Tuesday night--- I will call them on Wednesday morning just to be sure --- I am assuming if he is HAMA negative-- we will head to NYC on June 8th ( yes-- his 4th birthday) and be there for a week of 3F8-- Of course -- All of this is based on his HAMA test result--

That is it for now-- Thanks to all that bought a GGG T-shirt--- And to Kerri for organizing all of it--- A teacher had one on at school today and some of the kids said... "I have that sticker on my car!" I also forgot to thank Leslie Ford for printing tattoos--- that say Go Grier Go-- I have seen lots of kids with them on! Awareness is the only thing going to change the outcome of Neuroblastoma--- !

FYI--- if you have not heard yet about this news that will also bring more awareness -

September 13, 2008 will now be recognized as 'National Childhood Cancer Awareness Day' as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

Happy 'early' Birthday to me!

Grier had his birthday celebration at school today!! As you can tell from the pictures, he LOVED it!! I just wish I had my video camera!!
Sorry for the short update--- but I really have no news to report!

Not much to update--- Everything is going great around here---
We are enjoying the busy time the end of school brings--- I forgot how much we missed last year!! Grier is about to turn 4 on June 8th--- !!! It is very hard to believe!! I still look at him and see a 2 1/2 year old sometimes!! Maybe it is his size!!! Maybe it is the fact he is not potty-trained-- who knows--- But I have a lot of work to do this summer!!

He will have another HAMA test done on the 29th-- We are in the 4th cycle of accutane-- not looking forward to the usual side effects that it brings but we will get through it--

That is it for now---Thanks for checking in!!

We have survived a nice week at home-- busy but very NORMAL!

Our whole house has had allergy issues but that has gotten better so we are so glad to be on the mend-

Grier ( and I ) went to school for two days-- He is gradually getting adjusted-- His teachers are the best and I hope that I can sneak out for at least half a day before summer break!! I have tried to bribe him but it is not working-- he did tell me that Grace could stay with him instead of me-- But I quickly reminded him that she goes to her school!

If you have a second --- check out this blog... Charlotte Smarty Pants www.charlottesmartypants.com -- It is fun to read and I have learned quite a few tricks from it lately-- You will see a picture of me and the kids today-- The picture has a long story behind it-- but the short version is that Hayes was having a "tween" moment! I also answered lots of questions and hope that I raised some awareness for Neuroblastoma and pediatric cancer-- and I answered some fun questions too!

Tomorrow is Mother's Day and I wish all of you a great one-- Our NY social worker told me that everything happens for a reason so enjoy Mother's Day in Charlotte -- maybe I should write a book with her little email comments-- ! Don't worry Diane -- we will enjoy the day and actually everyday while we are at home!!

Just when you think you know what is going on with the new routine!

"There is nothing easy about any aspect of battling this disease.
As parents you have so much responsibility and so little control!"

Yesterday was one of those long days---I was busy making a RMDH reservation and talking with Corporate Angels--When I emailed our social worker in NY about a reservation at the Ronald-- she asked if we were coming for anything else other than 3F8-- I said no-- and asked her if she knew anything about his HAMA test yet-- She said it will be late Tuesday-- I replied saying Tuesdays are long when you are waiting for them to call-- And she said" There is nothing easy about any aspect of battling this disease. As parents you have so much responsibility and so little control! So I just continued to go about my day trying to let go of the control I wanted!

We were waiting for a call from Sloan and hoping not to get a call at the same time!! I know-- does not make sense! But we have always been told no news is good news with HAMA-- if you do not get a call then you are negative-- but they will call if he is positive because you do not need to do the shots-- The "call" comes late-- and most NB parents will tell you you can assume after 6:30 you are negative with no call! So... we left about 6:30-- went to dinner and to watch a Charlotte Christian baseball game--- I checked my messages a few times while I was gone and there was nothing-- I figured he was negative-- BUT wanted to make sure-- so I emailed our NP this morning and she said-- NO-- do not start shots-- we were going to get a call this morning-- Grier is HAMA positive again-- He will be retested in 4 weeks-- He will continue on accutane-- he has 3 more cycles left- So, another lesson in the NB world-- do not ASSUME anything-- !

Now-- I am going to cancel the reservation and flight-- take a deep breath... and change gears a bit because we will be in Charlotte next week and not in NYC!

THANKS!

In about a month you should start spotting Go Grier Go T-shirts everywhere! Although the response wasn’t what I expected, we did sell a total of 201 shirts -- Over $1,600 profit going directly to the Christenbury family. Grier’s battle to keep his body free from Neuroblastoma is ongoing, and the frequent travels to New York are costly. The Christenbury’s are grateful for your continued support. If you ordered shirts, I will contact you when they arrive.
Thanks,

Kerri Norwood

Today we went to our Charlotte Clinic!! Grier did amazingly well with accessing his port--- he screamed for a brief second and our Nurse (Jennifer) was so fast it was over before he knew it-! His counts looked good and Dr. McMahon ( or as Grier says.. 'what man?) seemed to think he looked good too-- He has 3 more days of accutane so some of his skin issues should clear up soon- After the appointment we went to Kinko's to Fedex his blood for the HAMA test--- It will be in NYC tomorrow morning-- And hopefully it will be HAMA negative! We will know by Tuesday night-

We have not been at preschool this week but if all goes well he will go tomorrow--- ! He has had a little cold for the past few days and they have had a virus in the school so we are being careful- I am trying to not be so careful that I kept him in a bubble---

That is it for now--- prayers are needed for all the families dealing with cancer-- and there are lots!

T-Shirt deadline extended, Plus new payment option!

If you have placed an order for ‘Go Grier Go’ t-shirts, you should have received a confirmation email today. If you did not receive your confirmation, please notify me ASAP at Rnorwood@comporium.net

The deadline for ordering t-shirts has been extended to May 5th! Just to make it easier, you can email your order form and pay directly into a paypal account. You will receive a confirmation email when your order form is received.

Email address to send order form: Rnorwood@comporium.net
Paypal account to send payment: Rnorwood@comporium.net





You may also continue to mail your order form and payment to:
Kerri Norwood
4501 Landmark Drive
Rock Hill, SC 29732

Thanks for supporting the Christenbury family!
Kerri

One week at home!

We have survived a busy week at home with NO doctor's appointments---! We were very busy with baseball and soccer games last weekend and more to come this weekend--

The most exciting news of the week is that Grier went back to First Pres Preschool!!! We have been visiting for a couple of weeks on the playground but not on a regular basis due to our NY schedule. Since we have a three week break in between the next NY visit this time-- I decided it was time to try-- It has gone OK--- Grier is very excited to go as long as I do not leave--!! On Tuesday he had a short visit on the playground and on Thursday and Friday we went from start to finish and had a fun time playing in the classroom and going outside and then finishing with lunch! The kids and teachers were great-- welcoming both of us!! He did great and I tried to leave the room once but it was short lived--- but I will keep trying-- With the year he had I have to keep reminding myself that he will take longer to adjust to his peers and this new schedule without me-- So, we will press on trying to get him adjusted to a school routine again-- hopefully before summer comes! I know that I could not have asked for a better program for him to be in-- wonderful teachers, directors and families-- Thanks for welcoming us back!

He is almost half-way done with this cycle of accutane!! You can already see the skin starting to peel and break-down and of course the mood swings are in full force-- I am trying to get Hayes and Grace to give him a break but they do not understand-- It is sibling rivalry in full force at our house!

Our next appointment will be on Thursday-- he will get his port accessed and they will draw blood for the HAMA test-- I am praying he is HAMA negative one more time-- so we can get four rounds of 3F8- I do not talk about percentages a lot but they say at least 4 rounds -- with 6-8 being better so that their body can learn to fight of NB on its own-- we will not know until late Tuesday, May 6th-

That is it for now-- check the reminder from Kerri about T's--

T-Shirts

Don’t miss the deadline!
Less than one week left to purchase your “Go Grier Go” t-shirt. All proceeds will go to the Go Grier Go fund to help defray medical costs, with a portion going to www.Bandofparents.org, an organization founded to help raise funds for neuroblastoma research. Show your support for Grier and the entire Christenbury family by wearing your t-shirt on Fridays. T-shirts will NOT be available for purchase once the deadline is over. If you have questions, contact Kerri Norwood at Rnorwood@comporium.net

Go Grier Go magnets are still available for $10 each. Contact Trisha Riesmeyer at eriesmey@bellsouth.net

Let’s continue to rally for Grier in his attempt to ‘STRIKE OUT NEUROBLASTOMA’!

CBS news footage at the Ronald

CBS early show footage on a RMDH house family -- Morgan has NB-

peaceful, quiet... charlotte!

We made it home today!! Thanks to Corporate Angels for an uneventful flight--
Grier is doing fine-- his eating has picked up and I do not see any signs of withdrawal from dilaudid yet-- We are having one issue--- all of a sudden he is having a reaction ( welt-like) to the shots he was given last week-- I saw one this morning at the airport-- and then after baseball 3 more showed up on the other leg-- weird-- I hope the benadryl stops the itching and makes the swelling go down-- Always something--
We made it to Hayes' game and I am glad since he hit a home run (out of the park!!) Go Steel Fab!-- We ended up staying around the field some extra time since it was so peaceful to be outside-- even the walk back to my house was quiet with only sounds from the birds!! I was so glad not to hear honking!!

Looks like our week will be pretty normal-- We will start accutane on Monday-- and get our HAMA test done MAY 1st--- I was told there is a good possibility that it will positive again-- but we will worry about that later-- We are scheduled for round 4 on May 12th if he is HAMA negative-

Thanks for all the prayers and good wishes this week-- Hopefully my updates will be weekly for awhile with no news to report-- We are going to try to get back to school soon-- he keeps asking and I think he is ready-- I will post some pictures soon if that happens--

Go, Grier, Go!! and all those other kids fighting this fight!!

DONE with Round 3

I do love Fridays of 3F8 week--- when we finish a week of treatment you feel so good-- Grier had pain today and was able to do his breathing exercises ( like Lamaze!!) during most of it-- he did have his 2 rescues of Dilaudid and it seemed to take the edge off--- Monday was the longest and most intense and then the rest of the week seemed to be the same everyday--- I am glad we did not have any surprises with blood pressure and O2 levels-- We also had a great roommate-- They called our room "The Southerners!"-- which is fine with me because it made time go by faster as we waited for the boys to wake up-- He is around Grier's age ( 6 months younger) and lives in Charlotte too-- we had a favorite nurse in common-- Dawn!! He does not go to CMC but had her with home health--

The general consensus from the team is that he looks good--- and he does -- I can not wait for him to get back home and start feeling good again-- This week takes a lot out of him! We will have to watch for withdrawal symptoms from Dilaudid-- His body is so used to having it for a week-- it can have symptoms...like fever, sweats, chills, mood swings when we stop cold turkey-- NICE huh?

So-- now it is time to pack and get ready to board our corporate angel flight early tomorrow morning-- We will be leaving extra early to avoid all the "POPE" traffic. He is in our "hood" today and tomorrow!!--- Hopefully nothing will stop us from getting there-- not even the POPE!!! We should be home in time for Opening Day Ceremonies for Dilworth--- and then we will get to see Steel-Fab play some baseball-- Somehow we lucked out not missing Grace's game again--- she does not play until Sunday!!

Here is a video of Joba (Yankees Pitcher) visiting the day hospital last December--- You can see Grier is a few shots--

Grier finished his 3rd day of antibody treatment--- nothing really different --- pain was intense for awhile with his heart rate going up to 183 today--- Some may find this weird but we want to see some pain-- because it is very common with HAMA to have no pain at all and that means you probably HAMA'd again--- So far-- there has been a lot of pain--

He is still sleeping--AHHH! This round has really screwed up his sleeping pattern--- He finally woke up last night around 9pm and was ready to talk and play-- He ended up back asleep by midnight-- and woke up early.... 6:45am! Hopefully by Friday, we will get closer to a normal sleeping schedule again--

NYC weather has been great-- we have not had to wear jackets and it makes walking around so much nicer--- I wish he felt a little better so we could go somewhere besides MSKCC!!

2 more days to go-- :)

3 more days-

Day 2 is over--- He did well--- his pain was more intense but did not last as long-- He is still sleeping-- we did go out for a brief walk to blockbuster-- but he slept the whole time-- It is really wiping him out this time--

We met the researcher responsible for 3F8 (Dr.Cheung)-- It was interesting to met him-- we have always heard about him-- He told us promising things about this therapy--- I hope he continues to work on new developments-- he seems to have a passion for finding a cure for NB!

Looking forward to the morning-- Grier will lively again and ready to go back for day 3!

Day one-- of 3F8 Round #3

I keep reminding myself that the first day of this treatment is the same--- and it is for the most part--- It is a long wait to get started and cleared by the team-- by the time the infusion is done you feel like you have been run over by a truck--- And I am not in pain-- just watching Grier and helping him cope does it to us!! We had a pretty normal day-- we did NOT have any breathing issues which is always a plus--- and we had a great group of nurses ( Lea, Latisha, Casey, and our NP- Ursula) helping us--we have some favorites now and it nice to see them when we return each time!! I wish we were at home so I could get some treats delivered to them like we used to do at CMC!!!

Grier perked up a bit around 7:30--- he wanted to go to the pizza place for a slice--- we strolled over because his legs were hurting and then came back-- He has a little puffiness in his face but other than that he is comfortable- I hope he stays like that all night!

Tomorrow will be much of the same-- but hopefully we will be back in the room at the RMDH earlier-- but you never know--- Historically, hives happen a lot on Tuesdays so we will see how he does--

Our plan is to come home Saturday early morning-- I am looking forward to leaving NY--Springtime makes it harder to be here because there is so much I am missing at home this time of year!! AHHH-- 5 mores days of NY living-!

ps-- There are some kids here at the Ronald that will be on the news a lot this week--- One is going to meet with the Pope at a special healing mass when he visits NY this week--- and the other will be on THE CBS EARLY show on Thursday am--- Both have NB --- So hopefully the news coverage will help with awareness--

We made it to NY-- Thanks to corporate angel network--- we flew here with 2 other families from Charlotte both fighting NB as well--- We arrived at the RMDH and unpacked-- and hung out at the house--- while on the elevator-- we met another family from Charlotte with the same story!! I am telling you this because that is 4 families dealing with a RARE aggressive cancer --all displaced from their homes to another hospital in another state!! Hmmmm!!

We went to dinner at Grier's favorite spot for creamed corn--- The waitresses greeted us like family-- it was very funny-- We have gone there a lot lately and they love to talk to Grier--

I will start my countdown of the days left until we fly back home tomorrow--- :)

ps-- We met Tom Lehman at the airport today--- Jeff talked Golf with him and he asked us a lot of questions about NB--- cool huh? He will be in Charlotte for the Wachovia Golf Tournament ---

Go PAT Go!! Still smiling at mile 11!!!

Spring Break.. Tests results..schedule.. Fundraiser.. and other tidbits!

It has been awhile since I updated--- We ended up taking a last minute trip to Myrtle Beach with two other families for spring break-- The 3 moms and 8 kids went for a few days!! Since we did not know our plans about NYC until we got home last Friday... this trip was thrown together in days-- And I can say we all had fun--- I am getting used to just dropping everything and leaving-- no more planning!! Who needs a calendar? Ha!Ha!

We did get a call from MSKCC on Friday about Grier's tests--- and there was no NB! We started his shots last Wednesday to increase his white blood count to prepare for 3F8 again--- He will begin that on Monday the 14th-- Monday is always the hardest and longest day-- lots of waiting to see the team to get cleared for 3F8 and then lots of poking with needles!! So say some extra prayers around 9am- It will be a late return to the Ronald... we will most likely let him sleep off the pain killers at the day hospital-- We leave tomorrow morning and will return Saturday- Hopefully HAMA will not come back during treatment this week-- and will stay away so we can get a few more rounds of 3F8 in--

I need to mention the GGG T-shirts-- I have some great friends and they are always thinking about how we can raise awareness for Neuroblastoma and help defray the travel costs to NYC for our family-- I am not going to tell you it is cheap to live two lives-- because it is not-- but we are doing it with a lot of help like the GGG concert and magnets and T-s--!! So... Thanks everyone!!

Grier looks for the magnets on the cars when we are around town--- and he is getting good at spotting them before anyone else in the car--- So many people liked the design and asked for T-s so that was another idea that came about because of all of you-- Order forms are on the www.gogriergo.com homepage--- You might need to hit refresh!! If you have any questions you can email Kerri Norwood-- rnorwood@comporium.net These are pre-order only and there is a deadline--- not sure what it is off the top of my head!
This is one of many things people have thought of from concerts to knitting and a lot in between---

Did anyone see Pat run her half-marathon today??? I missed it-- Grace had a soccer game--- but would love to see pictures !! Way to go Pat!

That is it for now-- I am going to pack the suitcase again-- :) I will update from NYC this week--

Some GOOD NEWS!!

Well-- My anxiety level has come down quite a bit since the phone call from MSKCC--- His MIBG and CT "look good"--- now we wait on Bone Marrow and Urine---
Thanks for all those thoughts and prayers this week--- I am not sure why but this scan time was much harder to be calm through!! I am so glad it is over--- sleeping will be much easier!!

We will enjoy a spring break together--- since last year we were at CMC!!
We will be back in NYC on the 13th for round 3 of 3F8--

We are able to "breathe" a little for the next 3 months!

no news yet--

Scans are done--- and now we are just waiting for results!!! The hardest part of the whole thing!
We are coming home tomorrow morning--
Other than that nothing else to report--

One more day of scans to go--

Today is going much better--- We got to MSKCC at (7!!... why I am still not sure) since we did not really do anything until 8:20! Oh well- Grier did fine as usual.. pushing the white medicine and then waking up for a brief second after they were done-- he fell back asleep and had a really good nap-- And he is in a pretty good mood today--

We stayed in our room while he went "commando" so we could collect urine for 4 hours!! FUN!!!
After that he went to the playroom for awhile--- and now he is back and ready to go to dinner---

He has done really well taking this NASTY medicine--- it is 7 drops of "iodine" to protect his thyroid from the MIBG injection---They are extremely bitter--- but has gotten them down for 2 days and we have one dose left--- his new trick is to suck on a lollipop before and after!! Tomorrow he will have to drink the contrast for the CT --- AHHH-- so many things to get done just to get scanned!!

And the final news of the day is that he is HAMA negative--- meaning he will do 3F8 again starting Monday, April 14th--- we need to be back in NYC on the 13th-- assuming all these scan results are OK-

So-- we are busy trying to find a flight home--- Corporate Angel has nothing right now so we must again book a last second flight on USAirways--- Oh well--- at least we will be home for the weekend--