Friday, June 13, 2008

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!!!!

Thursday, June 12, 2008

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!!

Wednesday, June 11, 2008

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--

Tuesday, June 10, 2008

*** 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!!!!

Monday, June 9, 2008

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--

Sunday, June 8, 2008

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!

Saturday, June 7, 2008

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--

Thursday, June 5, 2008

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.

Wednesday, June 4, 2008

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-

GO STEEL FAB!

GO STEEL FAB!

Go Grier Go Magnets are Here!

Go Grier Go Magnets are Here!

Grier's address in NYC

Grier Christenbury
Ronald McDonald House of New York

405 East 73rd Street

New York, NY 10021

Before 3F8

Before 3F8

After 3F8

After 3F8
30 minutes later

Free Money for Go Grier Go!.. just by shopping online!!

iGive.com

Grier leaving NY-pres and going back to MSKCC

Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!

Grier going for a ride in the ambulance across the street

Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!

Grier patiently waiting surgery to remove tumor

Grier patiently waiting surgery to remove tumor
Monday 10/29/07

Go Grier Go Picnic in the Park

Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!

On the way to NYC!

On the way to NYC!

Grier at the "new" clinic at CMC

Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07

Some of our team at the Hopebuilders 5k

Some of our team at the Hopebuilders 5k

HOPE IS GOOD!!

HOPE IS GOOD!!

Supersib- GRACE

Supersib- GRACE

SuperSib-- HAYES

Grier and his Wonder Pets fly boat cake!

Grier and his Wonder Pets fly boat cake!
I am 3!

Grier & Grace at Covenant

Grier & Grace at Covenant

Grier & Pat

Grier & Pat

Go Grier Go!

Go Grier Go!




Jack and Charlie wearing Go Grier Go T's

Jack and Charlie wearing Go Grier Go T's