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!