Tuesday, February 9, 2010

Tuesdays 3F8 update and some good news-

Charlotte's Cookies for Kids Cancer Bake Sale--- more press!!

The second day of the 3F8 infusion is done--- the side effects went as usual and he is now sleeping off the drugs while we are at the Ronald-
Tomorrow is going to be an interesting day... not because of the added procedures .... it is the weather that will add to the fun. Apparently NYC is going to get a blizzard... schools are closed tomorrow and the weather forcast is 40 mph winds, 10 degrees and 12-18 inches of snow.... Wow-- Grier does not seem too impressed right now--- he is used to Charlotte snowfall so this should be fun... Can't wait to see what the walk to the hospital will be like... :)

I wanted to share the great article that was on Cookies for kids Cancer's Blog--- They really captured the spirit of the amazing bake sale--- Also there is an article in Little One's Magazine--- they were talking about it too--- very exciting!!

Upcoming Event--

HOPE, LOVE & ICE CREAM-

This Sunday is Valentine's Day and Ben & Jerry's @ Parke Towne Village ( Woodlawn Rd- below Jason's Deli) is donating 25% of their sales from 12-9 to Cookies for Kids Cancer. They also are offering the cutest ice crem cakes... they look like conversation hearts. You can call the store and pre-order a cake for the weekend and the best part is that 50% of the sales of cakes will go to Cookies for Kids Cancer-- Please share this with friends--- We hope to see you at Ben & jerry's--- Grier and the rest of our crew will be getting an ice cream treat in between soccer games....

That is it for now-- I am going for a walk--- I need some sunshine and fresh air to clear my head--- It has been two really long days... Grier has done really well... but I can not stop hearing the crys from him and the 8 other kids-- Yesterday was a really tough day as I listened to a Dad yell to his child to wake up and open your eyes-- As I said before you never know what will happen.... and I am reminded that could be any of us yelling those words. I hope his child is OK... I know she had a severe reaction during 3F8 - HOPE for a CURE .... these kids are too little to deal with this.

The Queen City Reigns

Filed under: Bake Sale, Donations, Online donations — admin @ 10:38 pm February 8, 2010

“If it takes a village to raise a child, it’s going to take the world to find a cure for pediatric cancer.”

In Charlotte, North Carolina, for a few hours on a rainy Sunday in December, it felt as though the whole world came together to bring an end to pediatric cancer, all inspired by one little boy with one big spirit - Grier Christenbury.

A happpy snowman greets Charlotte bake sale guests.

Grier, a 5 year old Charlotte native, was plunged into the world of pediatric cancer at age 2, when he was diagnosed with stage 4 Neuroblastoma. Quickly Grier’s family’s focus shifted from soccer games and school to chemo, radiation, surgery, clinical trials, and most of all, keeping the cancer far, far away from his growing body. And just as quickly, the Christenburys learned of the need for funds for new and improved pediatric cancer treatments. They hoped for new options with fewer long term side effects and risks as well as higher survival rates.

Happy hosts and hungry kids.

But hope alone is not enough in the world of pediatric cancer. Hope needs action. So, the Christenburys threw their support to Cookies for Kids’ Cancer to raise awareness and funds for pediatric cancer research. Grier’s mom Amy hosted one of the first Cookies bake sales in 2008 and planned to host another in late 2009. Then Grier was unexpectedly thrown back into battle last fall, and the focus, once again, became keeping the enemy at bay.

Nothing draws a crowd like kids!

When friends in Charlotte asked what they could do to help, Amy answered, “Host a bake sale.” And, did they ever. Four weeks, hundreds of sponsors, one radio interview and two local news features later, Amy’s friend Lesa Helbein and her team of tireless (and sleep deprived) volunteers pulled off the biggest single day bake sale in Cookies for Kids’ Cancer history, raising $15,000 in just 4 hours.

Cookies + Kids + Decorations = Happiness

The pictures tell the story of the holiday spirit that reigned over the Queen City on that rainy Sunday. Cookies, cupcakes, and kids with smiles greeted Charlotteans who ventured out to support the event, in the end proving that if we all do a little, together it adds up to a lot.

Kids enjoyed climbing on the fire truck.

Not every bake sale is this big, with this many supporters. But every bake sale - every single one - is crucial to the world of pediatric cancer. Every penny matters, every dollar helps. Rally the people of your village and register your upcoming bake sale today

Just a few of the hundreds of Polka Dots cupcakes!

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Monday, February 8, 2010

Monday is almost officially over..... It has been a really long day... all 3f8 Mondays are long...! You just do not know what is going to happen --- it does not matter how many times you have done it.
Grier did ok-- lots of pain. He did lots of screaming and his breathing was controlled by a breathing treatment and an oxygen blow-by. He requested lots of hot packs on his back and tummy-- After the hour was done he fell asleep and rested well. We made it back to the Ronald by 3-- he slept until 7:30--- He is still wide awake now ( almost 10)--- It was a hard day in all the rooms as we listened to the staggered screams.... it is really unbelievable what these kinds go through-- (& their parents)

Grier did have a CT this morning before the antibody treatment.... he stayed still and I was beside him talking about whatever I could think of to distract him--- I don't even remember -- I liked this room better because I was able to wear the lead shield and stand right next to him and hold his hold as the bed moved him through the "doughnut machine"--- We do not know anything from the scan yet--- I hestitate to say no news is good news because I thought that last August and we know where that got us-- Actually forgot all about the CT when we were in the midst of 3F8--- I guess that is a good thing. Believe it or not but the anxiety from 3F8 makes you forget all about scans--

Tomorrow--- He will only have 3F8--- no scans.... Wednesday he will have an MRI at 11:30--- and then will have 3F8 afterwards. We will be at the hospital all day on Wednesday which may be a good thing since NY is expecting 12 inches of snow..... Can't wait to take a picture of the stroller in the snow!!

That is it for now--- 4 more days--- or as Grier says... 4 more shots!

Sunday, February 7, 2010

cycle 4 .....

We are in New York--- Our flight went as planned--- actually got in the City by lunchtime....Grier chose to go to Cafe Luka....after lunch we had plenty of time to make our rounds to get some supplies for the week- Food Emporium for cheez-its, Cherry H2O and clorox.... after that we headed to Duane Reade for some Smart Water :) Most of this afternoon was spent playing Ping-Pong in the playroom.... I tried to get him to go to Dylan's Candy Bar but he said he did not want to walk that far.... hmm... last time I checked he always rides in his stroller!! It probably was a good choice not to go-- it was about 20 degrees and windy.....
Our storage box was here when we got here --- it makes it so much easier to make our room our home for the week.... beds are made... actually the two twins are pushed together to make a King :)--- Grier is fast asleep in the "crack"---
Tomorrow we will head to MSKCC @ 7:45-- he will need to check-in, get his port accessed, a finger stick, a physical, drink contrast for a CT @ 10am--- After the CT we will start the premeds for 3F8--- It will be a long day....He told me tonight that he was glad he played ping pong today becuse he can't hit the ball when he has a tube in his port---
The good news is I am on the internet...... Thanks Jeanna.... I got it to work :)
Keeping everything crossed .... hoping tomorrow and the rest of the week goes fast and peaceful-
Amy

Wednesday, February 3, 2010

Grier eating "flakes of snow" -- look at his hair!!!

I just found out that Grier is HAMA negative ( negative is good-- means he will continue on the clinical trial) so next week our trip to MSKCC will include 5 days of 3F8 and a CT, MRI, MIBG and 4 Bone Marrow aspirates--- Whew... it makes me tired and light headed just thinking about all that he has to do next week-- Grier will start his shots to increases his white blood count tonight so I am sure that is when his reality will set in--- :(

Other than trying to "live" normally... not much has been going on here-- that is a a good thing!!! As you can see from the picture we got to see snow and for some reason Grier always trys to eat it :) I know some of you are laughing but the grass was covered when it was all said and done --- actually is was more ice & sleet--but the kids had a snow day so that is all that matters to them :) I just had CABIN FEVER!!!! I am so glad the sun is finally shining today.

Jeff, Grier and I leave Sunday morning for NYC--- we will get there in time to unpack and do "something" in the city before our crazy week starts--- And of course we will watch the Super Bowl--- :) I still can not believe it was two YEARS ago we were doing the same thing in NYC--- watching the Giants win and celebrating Valentine's Day-- We will fly home Saturday unless we can get a flight home on Friday evening with Corporate Angels--- I want to be home in time to watch Grace and her team play soccer on Saturday---:)

If you do not see updates on the blog or caringbridge-- remember that I have to get a password from the Ronald and it takes awhile- I will update on Facebook :) - (it is easy to do on my phone)--- as soon as I know anything from his scans I will post it--- :) Pray for clean scans and an uneventful week of 3F8.

Thursday, January 28, 2010

It's HAMA time!

Today is the day I dread.... not because we have to go to the clinic but because reality sets in and I have to take Grier to get his port accessed and have a vial of blood sent to NYC to see if he is eligible for another round of 3F8. We did the clinic visit early this morning before school. It went OK.... it is not fun when I have to tell Grier that I need to put numbing cream on his "button"-- he immediately goes into panic mode! We got to the clinic and I realized I forgot our "3F8 box" ( a little white box with instructions and the tube for the blood all labeled.... oops!!) So~ we drove back home and then back to the clinic :) It just gave the numbing cream more time to work :) He did OK with the port access ( lots of screaming but no tears while he is prepped) I would be the same I am SURE!--- I had a few questions about accutane... those side effects drive me crazy!!! I thought his skin was looking great.... and as soon as we walked in Dr. M saw him in the waiting room and said... oh I can see he is taking accutane!!! I said really???? I thought he looked good and he grinned and said his lips gave him away---- I can't wait until this Sunday-- Grier needs a break from medicine!

We will hear about HAMA by Wednesday. It really does not matter this time in regards to traveling to NYC--- we are going no matter what on Super Bowl Sunday. Grier will have scans that week so I bought the tickets yesterday--- I wish I would have gotten them earlier.... I was waiting to see what Jeff could do with work so I waited to buy the tickets. I had no idea that the weekend we are coming home is a holiday weekend-- uggh......... We are going to have to get off the "holiday" schedule--We have been on it a lot lately-- Most flights home were sold out and VERY expensive.... oh well... I do not have a choice so the tickets are done ~ Jeff, Grier, and I leave Sunday the 7th-- We will return on the 13th--- not as early as I wanted but I can always hope that corporate angels will fly from NYC- CLT again.... it sure did help ~

Grier has been doing great.... he takes his huge horse pills and all his other medicines without a problem. He likes going to TK and loves telling us about his day. He wants to "learn" how to read so Maggie got him some tools to help with that-- This will be the first time all year he has gone to school two weeks in a row--- and we are not even leaving yet--- He has next week too!!! My two weeks at home have been crazy.... last week was a blur.. very busy trying to catch up where I left off-- and this week a little of the same... I still have lots to do on my list... I had to take Hayes to the doctor after I took Grier today-- Grier kept asking me why I could not just take Hayes to "his" doctor-- I tried to explain to him they are different doctors-- ! We also had to take Tucker, our Golden to the Vet yesterday because he has another UTI ( and yes, I did have to get another urine collection from our dog--- if you are on Facebook you know I am getting good at that!) -- I think tonight after dinner I will just line everyone up and pass out their meds!!!! Grace and Jeff are the only ones that do not need to line up!! Doesn't our house sound fun!!

I will update before we leave--- I am hoping to hear that he is HAMA negative so we can continue on this study. I am also hoping to hear the phrase "clean scans" so we can continue on this path that we are on. We have never had scans and 3F8 in the same week so it will be very busy--- we are also going to try to do the MIBG scan without anesthesia for the first time--- ( I do have anesthesia scheduled as back-up)-- but I am hoping it goes well and he is OK with staying still for an hour while the scanner scans his whole body. I am sure he can do it... I am just not sure I can NOT look at the screen while I am in the room with him---

ok that is it for now-- Grier is back from getting his cleats for T-ball--- He is VERY excited..... Now we just need it to warm up so baseball season can start!!

Tuesday, January 19, 2010

We are home.... we landed in Charlotte around noon on Saturday and have been very busy ever since!
Our week in New York was uneventful and very familiar. All 5 days, Grier experienced lots of pain with hives and a high heart rate ( 180's-190's) during the actual infusion of the antibody. And all 5 days he slept most of the day after we returned back to the Ronald McDonald house-- He also had headaches after treatment.... they were really bad and we ended up sitting in a dark room while he slept. Each night he would perk up a little by 8:30 or 9 and want something to eat, so of us would venture out to First Ave. and pick up his requests!! He would go back to sleep late each night and wake up each morning ready for his shot and then we would head to the hospital--- I can not believe this was the 7th week of this type of treatment... 3rd after relapse..... I am not getting any better watching it and listen to others go through it but I have learned that a "good" day of 3F8 is one without crash carts and a team of doctors in your room-- so even though I think our experience is really bad I know we have had a good week of 3F8! Uggh---

Grier started accutane again on monday and he will take it twice a day for the next 14 days.... I have a new emollient, Theraplex that will hopefully keep his skin from breaking down too much during the next 14 days. I am also hoping we do not experience the nose bleeds and headaches.... hmm... am I asking too much?? We will return to NYC on Feb. 7th ( yes, Super Bowl Sunday-- I had a been there done that feeling when I found that out... we were in NY when the Giants won ~) I guess if we will be in NYC for the Super Bowl it would be great for the Jets to win--- :) It will be a week of 3F8 if he is HAMA negative AND a week of scans.... I am trying not to let scanxiety come too soon--- I said TRYING..... I can not believe it is already scan time again.

Grier is at school this week--- I am hoping the next couple of weeks allow him to get in a routine... he has had a lot of "first" days this year! We also need a new routine at home... living in one room all together for over a month has not been great on the old bedtime routine we had and just "independence" in general--- He has developed new fears and does not like to go anywhere by himself--- even BED!!!

That is it for now--- Sorry for the delay in updates... There is a new password system at the Ronald-- takes awhile to get a password to use the wi-fi--- after I got the password the wi-fi was spotty at best so it was a frustrating week on the computer.

Thanks to all that helped out last week while I was in NYC with Grier and my mom.... dinners, rides, etc.

Friday, January 8, 2010

A HUGE DONATION!

I have updated a few times since the amazing Cookies for Kids Cancer Bake Sale that was held at Blackhawk Hardware and Reid's . I have not talked about the event purposely because it seems everytime I sit down to update I am rushed.... I really wanted to tell you all about the day and all that happened--- I also wanted to tell you how much money we raised for pediatric cancer research... So, here it goes... I just hope no one calls "MOM" for a few minutes!

Most of you know that we did our first Cookies for Kids Cancer bake sale in 2008-- It was Gretchen's birthday wish to have 50 bake sales--- so I said yes.... and actually talked my college roommate into doing one in Morehead City, NC. We did our sale over a two day weekend in our front yard... it was Festival in the Park weekend and we had tons of foot traffic :)--- Kristie's church in Morehead City did theirs during youth Sunday and it was a youth mission project. Both were very successful and involved a lot of people... we had a great time and knew that we wanted to do it again.
I again made a promise that we would have another bake sale but I had no idea what August 2009 had waiting for us..... Most of you know by now I am a day by day planner... I don't like to make long range plans so I was waiting until we finished our quarterly scans in NYC to set the date for the next bake sale. When we found out about the possible relapse I went back into a fight mode and was very busy scheduling tests and procedures so we could find out if Grier had relapsed. By the end of August, we found out that Grier had relapsed and the crazy life that we led in 2007 was again our normal-- The bake sale was still on my mind but I had no idea how it was going to get done. I had only slept in our house a couple of nights a week and Grier and I were always at CMC for something and we knew we would be in NYC for awhile for surgery... we also had a team for the CureSearch walk to organize so our plate was more than full---- I don't even remember most of the conversation with Lesa but I know that her offer to help with a bake sale transpired into my dream bake sale. I do remember very early in the planning stages, Lesa emailed me to tell me her daughter, MacLean works at Polka Dot Bake Shop and they had offered to donate 500 cupcakes to the bake sale and from that email I knew this was going to be a great bake sale--- really I had no idea Lesa, Patty and Mary could dream bigger than me!!!
Lots and lots of planning took place in three short weeks.... Grier and I were in NYC for treatments and I would get some updates... I loved to hear about the planning--- it was exciting to hear about so many people coming together for pediatric cancer awareness and research. Bakeries from all over Charlotte wanted to donate baked goods for this bake sale-- Lesa even said that she had bakeries calling her to ask if they could participate. We also had the "homemade" goods made in the homes of friends--- I love to hear about the awesome toffee that people bought-- because I am quick to chime in--- "That is my neighbor, Melissa who made that..." I also heard a story about someone being a nice neighbor and helping an older couple clean their yard-- and in return they made tons of cookies for the bake sale. I had the best time sitting with Lesa and Leah on Christmas Eve at Dilworth Coffee listening to bake sale stories.... it was a wonderful "gift" for me. I think the most touching story was about the man who lived in the Men's Shelter near Reid's. He was one of the first "customers" and donated a couple of dollars... I know the bake sale volunteers were trying to give his money back but he insisted....he wanted to donate to pediatric cancer research so they packed him a huge bag of goodies and off he went--- amazing huh? There are so many stories like the ones I just shared. I wish I had a book of all of them... there are so many "good cookies" in Charlotte!
The raffle was also a big hit --- I was again overwhemled with the amount of donated items from businesses and people all over Charlotte. I was lucky enough to help draw the names-- it was great... I loved pulling out a name and saying.. I know them!! If I did not know them I do now since we called and met them at Dilworth Coffee so they could pick up their prize. I am glad I was able to do that since I was not able to be at the "bake sale" in person.
I have thought about how I could THANK all that helped on that rainy and cold Sunday--- and I have no idea--- I like to say that this blog is a THANK YOU because I could never handwrite notes to everyone that has been on our Grier Team--- but the bake sale organizers, volunteers, bakers, drivers, participants need a special THANK YOU because that Sunday (and the 3 weeks of hard work) before the day gave me and lots of cancer parents HOPE--- Money that is raised for research will provide better treatments than the ones that are currently 20 years old (chemo). Money will also pay for clinical trials that are underfunded because pediatric cancer is still considered rare. 100% of this donation went to pediatric cancer research --this is really important to me since a lot of organizations use children's photos but give less than 3% to pediatric cancer (ie. American Cancer Society).
Grier's relapse certainly rocked our world... but I have HOPE that new trials will open up so we can keep him as healthy as he is right now--- and prevent any other relapse. The Charlotte, NC Cookies for Kids Cancer Bake sale raised almost $14,000 (Glad to Give matched November and December bake sales)and raised more than the San Francisco and NYC bake sales. I hope everyone just said "WOW"-- Charlotte is full of "good cookies"
I guess I was totally kidding myself to think I could write a "well-thought out" blog without being interrupted.... :) I hope you could get a little bit of a picture of the energy and time that went into the planning of the bake sale on steroids!!! I also hope you know how much our family thanks you for being a good cookie. I hope that you want to come out and support this event next year and many years after. And THANK YOU to the EVERYONE that helped in someway...see you next year.. at the 3rd Annual Cookies for Kids Cancer Bake Sale~ If you have pictures from the bake sale I would love to see them... please email me~

Tuesday, January 5, 2010

What day is it??

For over two weeks I have been trying to get back into the swing of things at home--- Christmas and New Years added lots of extra "fun" here---- We had a really nice time with family and friends.... and the break from school was nice....

Grier did great at both of his appointments in Charlotte--- We just finished the 14 days of accutane and I was a little nervous at first.... he had a really bad headache and threw up so I made the phone call to both doctors to see what they thought.... we kept a close watch on him and made sure he he was eating and drinking enough when he took the pills... He did not seem to have another bad headache after the first day. He did get a really bad nosebleed on Christmas Eve-- took awhile to stop but has not had one since- both are common side effects of accutane~

I did gamble a bit... I went ahead and bought our plane tickets for NYC a week ago even though I did not know if he was HAMA negative or not---If his test came back positive we would not have gone on Sunday but I am happy to say he is HAMA negative so we are leaving for NYC on Sunday... well, let me rephrase that.... HAPPY is not the best word !!! We are leaving for NYC and will continue on the treatment plan that we had planned on--- :)

It is the 3F8 antibody treatment and it will last Monday- Friday. I have to start giving him shots tomorrow as well as another medication to prepare him for Monday.

Grier went back to TK today -- he seemed to have a great time... the funny thing was that he said that he missed school yesterday... I honestly thought they had a teacher workday so I messed up!!! Oh well..... I am not used to the school routine either :)

That is it for now-- I am sure I will update before we head to the Big Apple for the first time in 2010~

Saturday, December 19, 2009

First let me say we made it home before the snow in NYC----!!!!!

OK-- now that I got that out of the way I will back up to Thursday.... not to sound like a broken record but 3F8 was a bit different this time--- LOTS of pain every day and even residual pain and headache when we came back to the Ronald each night--- usually ( or in the other rounds he would experience less and less pain and require less rescues of Diallaudid by Friday because they say the nerves are pretty saturated at that point--- well--- I did not see that this week! And to add to it he had bone marrows done on Friday morning ( well, it was going to be morning but ended up not actually happening until around 1) So, the added pain of that on top of anesthesia made Friday a really long day at the hospital. We did luck out this week and had a wonderful 3F8 roommate, Andrew and his family-- yes... sometimes there are sometimes 2 kids in a room doing antibody therapy-- Grier also got to meet Liam ( his mom, Gretchen started the Cookies for Kids Cancer-- we have talked for a long time but the boys have never had a chance to play) they hung out in the playroom and played with their itouch together--- He also got to play with his sister and he has not stop talking about it!! Funny... after you are in NYC for almost 20 days he gets "used" to it and it is time to go home--- he was even going places without me at the day hospital...and starting to talk more and more to the nurses---

During our long stay we got to see old friends that we met at the beginning of this journey as well as make some new ones--- As much as I cringe about having to stay a long time I am very thankful for that room at the Ronald-- :)

Grier also had another visitor from home on Thursday.... Mrs. Beth, his music teacher from preschool last year was in town and came to the Ronald for a visit-- Grier was very excited about this and had plans to show her the playroom but his headache was making him feel really bad--- so she came to our little room and hung out for a little-- :) Not sure how I missed that photo op!!!

After Treatment on Friday my mom headed back to the room to start the process of packing--- WOW!!!! who knew what you can accumulate in a month--- her help was awesome-- there would have been no way I could have pack that room, done laundry and packed our "pod" while taking care of Grier--- It was a long process.... and to think I was living the "simple" life!!!

Our flight was this morning at 8am and we left the Ronald around 6am--- we are all tired --- well... my mom and I are.. Grier has jumped back into life in Charlotte without missing a beat... not sure how is does this--- but I would like to know the secret :)

Next week will be the start of a new medication.... if you have read this blog for long time you know that he took accutane for 6 months--- he will start again on Monday--- It is also used for acne but in Grier's case... neuroblastoma --it is thought to make cells mature faster before they have time to "go bad"-- He will take it at a very high dose for 2 weeks and then have two weeks off-- his skin will dry out A LOT--- and it can cause mood swings--- I am hoping we do not have those side effects like last time-- We also do not get a pass this week at the doctor's office.... we have to go to our clinic on Christmas Eve to get a liver test (blood test) to make sure the levels are OK do to the high dose of Accutane--- then next week we go back to draw blood and the we FedEx it to NYC to see if he is able to get another round of 3F8 on Jan. 11th---- busy...busy.... but we are home and are lucky enough to live close to CMC--- the worst will be having to get the port accessed twice--- uggh!

That is it for now--- we survived a long stay and are home now---- Thanks for all the help while I was gone-- I had the best help with Hayes and Grace after-school--- Thanks Haley!!! Thanks to my carpool for Hayes.... and thanks to Nancy for taking care of Grace!!! Thanks for all the meals and anything else I missed--- It is really helpful to have such great friends when life gives you lemons!!! Also... Ross I know you are reading this and you are in trouble!!!!! THANK YOU TOO!!! :) Thanks for all the cards and packages--- that was a great way to try to get him to crack a smile after treatment!! And thanks to my mom for living in NYC for a month with us!!!

Merry Christmas everyone---

Amy

Thursday, December 17, 2009

Picture of the bake sale in the Charlotte Observer~

Wednesday, December 16, 2009

Everyday is SO different

2 More days of 3F8 complete since my last update.... and all three days have been so different!

Tuesday he had the "typical" response to 3F8.... LOTS of pain... but we did not have the breathing/hive problem that he had on Monday...He woke up late afternoon and wanted to go to the playroom to play games and ping-pong... he also got to hang out with Adam for a little until he left to go home. He even felt well enough to go to a dinner and party in the dining room that was provided by the NY Athletic Club-- I could tell at dinner he was losing steam so after he ate cotton candy we headed back to the room--

Today was about the same with some hives on his neck and face and LOTS of pain again-- I really wish we could find the right combo to make the pain more manageable... but there is no "RIGHT" way when you are in a clinical trial-- His afternoon was a total opposite of yesterday.. He has slept and had LOTS of residual pain in the same spots he had during treatment. He did remind us before he took another nap that there was a party tonight .... he asked us to go and get his "Santa gift"--- I hope whatever it is cheers him up when he wakes up.

This week is total opposite of last week... it is hard to believe. I can help but think the radiation and 3F8 back to back are making this week extra tough. I remember this the last time we did this too.

So, 3 more days until we head home. I can not believe it-- we have been here so long I have almost gotten used to this-- and am a little nervous to pop back into the real world-- I have done NOTHING to get ready for Christmas.... and I can tell you there will not be a Christmas card this year from us--- it is one of the things that I am crossing off the list...I am secretly wising for time to stop and add a few extra weeks to this month so I can catch up---- but I know it will be January before I know it-

The bright side is there is only 2 days left of shots and 3F8 of this cycle... and that the thought of packing is not so overwhelming we are "storing" some of our stuff so we do not have to take it all home--- we have accumulated a lot of extra!!! I guess that happens in almost a month :) I think that is why I always return from NYC and purge things in my house..... :)

That is it for now---

Hoping for a calmer less painful night here in room 311---

Monday, December 14, 2009

The start of another countdown!

Day 1 of 3F8 is DONE--- and as you can see from the pictures it was interesting to say the least... you just never know how a day will be and this treatment was very similar to a treatment well over a year ago.... and because I have seen it before the panic did not happen!!

Grier had lots of hives right away... and these hives are also internal so it made him cough.. and have a breathing reaction--- we always have a blow-by of oxygen as he gets the treatment and I watch the monitor to see his stats... he was in the 99-100 range and all of a sudden he dropped into the low 90's... then high 80's so I called our great nurses and they started a nebulizer treatment but it was not working.... we needed him to cry or scream so they did their magic and got him sitting up and checking all vitals--- his blood pressure dropped into the 60's/30's --- he started to cry a little... then they changed the mask --- gave him a bolus of fluids and his stats started to come back.. it took awhile to get his heart rate back to normal... but by 3:45pm he was well enough to go back to the Ronald--- he ended up sleeping until 7:15~ He has eaten some dinner... and been playing again like this morning did not take place!!!

We did get to see a friend from Charlotte today... his is here getting scans done.... Grier liked showing him the itouch this morning.... He was on the look out for another friend, Marett -- she is here for scans too--- we are hoping they receive great news !!!

Sunday, December 13, 2009

Ugghhhh.... Another weekend with no Internet at the RONALD~ I would have updated sooner but it is impossible for me to do this on my phone.

It has been very cold here so that limits the walking we have been able to do :) So, Grier has had PLENTY of time at the ping-pong table in the playroom as well as the Ms. Pac-Man video game.... yes, I said Ms. Pac-Man!!! I even remember loving that game.

On Friday, we had another fun visitor.... Jeanna was here and stopped in and we went to Lenny's before she flew home.... she also played a game of ping-pong with Grier!!! It was fun to see a familiar face from home.

We have been on a few more trips via the NYPD bus.... we went to the premier of Princess and the Frog and to Christmas Spectacular with the Rockettes at Radio City Music Hall. Both were fun trips and the ride to and from might have been just as exciting! Nothing like weaving in and out of NY traffic in a huge school bus with lights and sirens.

I read a few of the last posts and it almost sounds like we are on a NYC sightseeing vacation... but I can assure you this is a time filler.... and in between we are going to the hospital, getting poked and prodded, giving medicine 3-5 times a day, giving a shot..... and tomorrow is the start of the dreaded antibody (3F8) week!!! We will have to be at the hospital by 8 and Grier will need his port accessed and a finger stick-- those two things right there are enough to ruin a day. After that we will meet with the TEAM (Neuroblastoma)-- get cleared for treatment and then wait for labwork-- as soon as that comes I will give him the shot and we will wait an hour before we can start all the pre-meds for treatment. I am planning for a whole day at the hospital... Grier will be in a narcotic haze for most of the day. We will repeat this 5 times this week but on Friday he has to have Bone Marrows done before the 3F8--- I am glad he has gotten to see another side of NY because this week will make him say He DOES NOT like NY again! The plan is to fly home on Saturday morning--- I can not believe we have been here for almost 3 weeks!!!!

I have saved the best update for last.... CHARLOTTE, NC just had the biggest Cookies for Kids Cancer Bake sale in history!!! We beat NYC and San Fran!!! I want to thank everyone involved especially, Lesa, Patty and Mary for running with this idea. I do not know a final total yet but it is BIG--- and going to be doubled by Glad! As Grier goes through this treatment this week we are very thankful for the opportunity to participate in this clinical trial.... Hopefully one day enough research will be done so better, far less painful treatments will be developed to cure pediatric cancer or at the very least to be able to treat it as a chronic condition without the loss of quality of life. Thanks again to all you GOOD cookies out there!!!!

ok-- off to bed... I hope I can sleep as I anticipate the next five days of HELL--

Friday, December 11, 2009

Bake Sale Story by Molly G on WJZY

http://www.wbtv.com/Global/story.asp?S=11664693

Thursday, December 10, 2009

4 days until the Bake Sale!! Please pass around to frieinds-

Wednesday, December 9, 2009

Our countdown is DONE--- Grier has completed 14 radiation treatments !!! This is not an easy thing to do for most adults and he did it-- Today was an easy day... two radiation treatments and a doctor's visit... the weather made it a little harder this morning--- rain and very windy-- but the afternoon turned out fine.

We heard about Grier's HAMA test and he is negative so GM-shots started today and will continue for 10 days-- we will start 3F8 on Monday for five days--- and HOME on the 19th-- just got the tickets today!!

I added a few pictures from the NY Knicks game and others I had not uploaded.... Grier is doing well... he did say today he was ready to go home-- I think he is a little tired so hopefully the next few days NOT having to go to the hospital will help. Tomorrow we are going to the Princess and the Frog premier---

The bake sale is almost here and it sounds like it is going to be AWESOME----

Please copy and paste this information and send it around to your Friends and family--- we need people to go and participate NOW-- I really wish I could be there..... :( Not only will there be baked goods but also a raffle with so many neat items donated by local shops, friends, and teams---

Confirmed Raffle Items:

· Zhu Zhu Pet

· Polished @ Providence Rd.-manicure/pedicure

· Mr. K's-(2) $10 gift cert.

· Charlotte Symphony tickets-(2)Lollipops Concert-Sat., Jan 16, 2010

· Charlotte Symphony tickets-(2)Symphony-"Variations"-Sat., March 6, 2010

· Charlotte Symphony tickets-(2)Symphony-"Russian Spectacular"-Sat., March 27, 2010

· Edible Arrangements-(2) $50 gift cert.

· Dish It Out!-Pottery & Studio time

· Renee Simmons-Pottery bowl w/ matching casserole dish and small pitcher

· Greg Simmons-1 week baseball camp @ Charlotte Christian

· Just Fresh @ East Blvd.-Gift Basket

· Wolfman Pizza-$15 gift cert.

· Dilworth Coffee-$20 gift card

· Rusty's Deli-Dinner for two

· Peek-a-Boo Couture-$25 gift cert.

· Berrybrook Farms-$10 gift cert.

· Zen Asian Fusion-$40 gift cert.

· Roly Poly-$20 gift cert.

· Dolce Italian Restaraunt-$25 gift cert.

· Pasta & Provisions-1 lb. pasta & sauce

· Cottage Chic-candle and body lotion

· Massage Envy-1 hr. massage

· Kixx Cool Shoes for Kids-$50 gift cert.

· Sir Edmond Haley's-Lunch for two($25)

· Fuel Pizza-$20 gift cert.

· Bedford Falls Toy Shop-Beyer Horse(value $45)

· The Place for Flowers-Poinsetta

· Fitness Together-$170 gift cert.

· Phil's Deli-$25 gift cert.

· Brixx Wood Fired Pizza-(4) $25 gift cert.

· Palm Beach Tan-(20)1 week free gift cert.

· Asana Activewear-$50 gift cert.

· Ben & Jerry's-(4)free ice cream cones

· Barnes & Noble-(2)bags of Godiva Dark Chocolate Caramels

· Dickadee's Deli-(2)free lunch certificates

· SAS Cupcakes-(?)dozen cupcake certificates

· Milky Way-$15 gift cert.

· Showmar’s-$20 gift cert.

· YAMA Asian Fusion-$25 gift cert.

· Blu Basil-(3) $10 gift cert.

· Salsarita’s-$10 gift card

· Scout & Molly’s-$50 gift card

· Qdoba(Jaime)-(2)$10 gift cards

· Park Rd. Books-$10 gift card

· Brownlee Jewelers-Pair of Honora earrings

· B.D. Jeffries-(2)”Juliska” vases

· Ageless Remedies-$50 gift cert.

· The Purposeful Play Co.-Educational Kit for 4-6 year olds($195 value)

· City Art Works-Handmade ‘Crispina” Stuffed Animal($42 value)…Small Rug-‘Home at Last”($42 value)…Small T-Shirt by Sticks-‘Cherish Family’($32 value)

· Megan & Chris Stuart-(4) Nascar tickets and Pit Passes

· Petal-$25 gift card

· ? -Electric Toothbrush

· Our Place-$50 gift cert.

· Showmar’s-(2)$10 gift cert.

· Cookies by Design-7 cookie basket($52 value)

· Hotham-fa-la-la apron, DayNa Decker candle($79) value), Antica Farmicista Home Perfume($68 value), 3 Votive candle holders($48 value)

· Swoozie’s-Santa cookie plate, 2 Santa votive holders, Santa wine cork, Santa serving knife, Santa Hot Cocoa and Santa napkins

· ChezElle-clutch purse

· Alphabet Soup-Holiday bucket of goodies($105 value)

· 3 French Hens-Paula Deen’s: My First Cookbook for Kids’

· Stevesmithauthentic.com-Autographed 8 x 10 Steve Smith Photo

· Bobcats-Autographed basketball

Group of local Moms holding Cookies for Kids' Cancer Bake Sale at two separate locations on Sunday, December 13 from 1-5 PM to support Pediatric Cancer Research:

Reid's Fine Foods(225 E. 7th St., Uptown)
&
Blackhawk Hardware(Park Rd. Shopping Center)

In honor of Grier Christenbury and all the 'little warriors' like him.

We will have sweet treats and breads from every one's favorite bakeries, such as, Amelie's French Bakery, Polka Dots Bake Shop, Edible Art, Tizzert's and Suarez Bakery, just to name a few. We have over 20 bakeries and bread makers donating baked goods, as well as, lots of goodies baked by local mothers.

Glad's-Glad to Give Program will be matching the proceeds from any Cookies for Kids' Cancer Bake Sale held in the months of November and December!

Cookies for Kids' Cancer is a non-profit organization committed to raising funds to support research for new and improved therapies for pediatric cancers. Through local bake sales, Cookies for Kids' Cancer provides the inspiration and support for individuals, communities, and businesses to help fight cancer.

The first Cookies for Kids' Cancer bake sale was held in December 2007, when the mom of a young child with cancer decided to have an enormous bake sale where she and others would sell 96,000 cookies to raise money to help fund a pediatric cancer treatment in development. With the help of more than 250 volunteers, all 96,000 cookies were baked and sold in just three weeks. The bake sale raised over $400,000. From the support the first baked sale received, the idea to create an organization for people to hold their own bake sales came to life with the creation of a national organization.

Cookies for Kids' Cancer is not about one child or one type of pediatric cancer. It is about changing the facts of pediatric cancer for the better, forever. Childhood cancers are the number one disease killer of children - more than asthma, muscular dystrophy, multiple sclerosis and pediatric AIDS combined. Nearly 13,000 children are diagnosed with cancer each year. Survivors of childhood cancer face a broad range of physical and psychological challenges imposed by the disease, and some will suffer its long-term effects for the rest of their lives. Despite all these statistics, there has not been a new drug developed specifically for pediatric cancer in over 20 years.

Together we can raise the funds and awareness necessary to change the face of pediatric cancer research and to provide more families and children with the hope they deserve. Cookies for Kids' Cancer is committed to raising funds to support research for new and inproved therapies for pediatric cancer. Make the future of pediatric cancers something more than a scary statistic. Join in the fight because every child deserves a chance to live their dreams.Show quoted text -

Visit www.cookiesforkidscancer.org to find out how you can support Cookies for Kids' Cancer

Tuesday, December 8, 2009

3 to go--- and we are tired :)

Grier has 3 more radiation treatments to go---- one this afternoon and two tomorrow-- I am ready and I know he is--- he has done a great job staying still and the lack of anesthesia has helped his mood a lot--- he has not had any side effects so far-- he has more energy than my mom and I do at the moment--- The late nights and early mornings are catching up with me---- but that does not stop us from trying to make this not so fun trip ... FUN!

We saw Shrek the Musical on Broadway last Friday Night--- It was great-- Grier was laughing out loud and seemed to enjoy everything about the play--- He fell asleep in the cab on the way home but it was almost 11pm! Saturday.. we slept in a little and the rain helped slow us down-- so we rented a movie, went to the playroom and made an appearance at one of the Holiday parties--- but really just hung out-- it snowed a little. Saturday Night we met a nice soccer team from Long Island University--- they came to the Ronald and played a soccer trivia game-- Grier liked it but later said he wanted to see them play a soccer game :) Sunday was a little busier.... we went out to breakfast at Cafe Luka and after breakfast we had a visitor from Charlotte... Ms. Pat and Ken were in NYC so they got the grand tour of the Ronald and then we walked in our neighborhood a bit--- we should them "crumbs"-- the cupcake store!

Monday started the whole process of getting up early again and going to the hospital for treatments--- After the afternoon session we went to Madison Square Garden with a few families from the Ronald to watch the NY Knicks play--- it was a lot of fun-- We were courtside during practice... Grier had a picture taken with a few players-- ( there was quite a size difference!) After the warm-ups we went to a suite had dinner and watched the Knicks win--- LOTS of fun-- and perfect for Grier--- he was into it-- While we were there, Jeff called to say he saw us on TV-- so Grier thought that was cool-- This was all part of the garden of dreams foundation-- We rode in a police van to MSG and that added to the excitement--- it was fun to watch taxis move over with the lights and sirens-

That is it for now--- One week down--- We should find out tonight about his blood test that he had done on Friday--- If it comes back negative I will have to start giving shots tomorrow to prepare for the next round of 3F8---

Thanks for all the messages... emails... cards.. and packages--- Grier said that everyone must really miss him because he is getting a lot of mail :) He loves to check the mailbox....

Before I post this--- DON'T FORGET about the upcoming bake sale for Cookies for KIDS CANCER--- THIS WEEKEND at REID'S & BLACKHAWK---

see info below---

As we mentioned in our previous e-mail, we are in the throws of putting together a Cookies for Kids' Cancer Bake Sale in honor of Grier Christenbury. We know some of you may not know Grier, but he is a TK student at First Pres. WDS and is currently battling Neuroblastoma. Please go to www.gogriergo.com to learn more about Grier and his brave battle with this relentless disease. That being said, we are still looking for some volunteers! Although we have had a great response, we are still have spaces we need to fill at both locations. Parking will be free for any CFKC volunteers in the Reid's parking deck on Sunday.

These are the positions we still need filled:

Reid's
12-1:30 Table Helper
4-5:30 Table Helper
Sign Holders(great job for older children)
Delivery driver to deliver baked goods from drop-off sites to bake sale

Blackhawk Hardware
2:30-4 Table Helper
4-5:30 Table Helper
Sign Holders

We are also in need of a few more bakers and we still need lots of paper lunch bags and Glad zip bags of any size!

Does anyone have a tent? We are in need of 3-4 tents!

On another note, we have decided to throw a raffle into the mix! We are in the process of collecting donations for our raffle and would greatly appreciate anyone who might have an item they would like to donate (i.e. Panthers/Bobcats/Checkers tickets, movie passes, gift certificates, etc.). We already have a Zhu Zhu pet to raffle off, as well as, manicure/pedicures, Symphony tickets, restaurant certificates, etc. Every little bit helps! We are trying to take advantage of the fact that Glad's - Glad to Give Program will be matching our proceeds dollar for dollar. Please visit www.gladtogive.com to learn more... there you will find Grier's story highlighted on their website along with many other brave little warriors battling Neuroblastoma.

If anyone has an interest in helping collect raffle items, please contact: lesa.helbein@gmail.com or call (704)777-1131.

We are also looking for corporate donations! We would greatly appreciate it if some of you would be willing to approach your employers as may your spouses, to see if they would be willing to help out with this worthy cause. This would be a great tax write-off for those who have not yet met their yearly quota's of up to $500. Please take the time to consider this as an option. We realize that it may be awkward to ask for money in these uncertain times, but there is nothing more uncertain than cancer. 100% of our proceeds will be going directly to Sloan-Kettering in honor of Grier for pediatric cancer research. The science is there to help create new therapies for these children, but the funds are what is lacking.

Some of you may have seen an article in 'O' magazines December issue on the Cookies for Kids' Cancer cause with Gretchen Holt Witt, the mother who founded CFKC. She had her first bake sale in December 2007, and since then has raised over $400,000 for pediatric cancer research through this 'grass roots' effort. Please go towww.cookiesforkidscancer.org if you'd like to know more about how this all came to be(you'll see Grier highlighted on this website as well).

Also, we have attached a couple of items above that we thought might interest you.

The founders of Cookies for Kids' Cancer believe that if we all do a little, together we will do a lot. Please be a 'good cookie' and help us with our efforts in making this the biggest bake sale Charlotte has ever seen!

And remember...

Cookies for Kids' Cancer Bake Sale

In honor of Grier Christenbury

Sunday, December 13 from 1-5 PM

2 Locations:

Reid's Fine Foods(225 E. 7th St.)
&
Blackhawk Hardware(Park Rd. Shopping Ctr.)

We will have lots of sweet treats and breads from every one's favorite bakeries, such as, Amelie's French Bakery, Edible Art, Polka Dots Bake Shop, Suarez Bakery and Tizzert's just to name a few. We will also have Dilworth Coffee and Smoothie King participating in this event!

Friday, December 4, 2009

A Friday Update

Grier finished #8 out his 14 this afternoon--- it is getting a little easier..... he has a routine down and we are following his lead! He is picking a new song everyday... today's choice was we will rock you by Queen--- yesterday it was Owl City- fireflies-- After we get the ipod all set up I leave and the thick steel door shuts.... and I give a play by play through the intercom telling him when the machine will move and when the loud buzz will happen-- we count down the buzzes and when we get to #4 he knows the door will slowly open and I will be inside--- he is even smiling when I come in because he is so proud that he is doing this without tears... We do not have any treatments over the weekend.... so we will begin again bright and early on Monday Morning (7:30am)--

We have gotten to do some fun things--- actually we have been very busy.... On Tuesday, Bank of America had a party for the kids at the Ronald in their offices near Rockefeller Center-- we all piled on a bus and went to that--- there was a ton of traffic because of the crowds attending the tree lighting.... so it took almost 90 minutes--- but we did get there and Grier enjoyed watching the tree lighting and listening to the performers while staying dry-- Last night there was the annual Share a Night fundraiser here at the house... They lit a tree, a menorah, and the Kwanzaa candle--- had a sing-a-long, and a special appearance by the Man himself--- SANTA! He was escorted by a couple of Rockettes--- Tonight we were able to receive some tickets from the house to Shrek the Musical--- so we are excited about going to Broadway in a few hours....

It will be a nice way to end a busy week--- I am looking forward to sleeping a little late in the morning :)

All in all my mom, Grier and I are surviving here in NYC--- It has been 5 days and I am ready to go home--- but we have a ways to go-- Grier did have a blood test done today to check to see if he is HAMA positive or negative--- we want him to be negative so he can receive another of 3F8--- we will find out these results Tuesday Night---

And last but not least--- the bake sale planning is going strong..... if you would like to help please see the email below--- all money raised will be going to find a cure for pediatric cancer-- A HUGE THANK YOU to all that are going to help-- and especially to Lesa, Patty,Mary and Maclean for taking this idea and making it come true!

Blackhawk Hardware
2:30-4 Table Helper
4-5:30 Table Helper
Sign Holders

Tuesday, December 1, 2009

2 down 12 to go!

After a delay due to weather and some turbulence in the air we landed in NYC last night around 9:15pm---- Our taxi ride was very quick ---- just put it this way.... I was feeling car sick and the usual 30 minutes from LGA to the Ronald was in 13 minutes!!! The best part about our arrival last night was that we did not have to unpack and check in again- the room was exactly how we left it and all we had to do was get dinner--

Radiation started bright and early today--- I was prepared for a less than 5 minute procedure but it was a lot longer again- and again Grier was very upset--- I could not be in the room at all and I had to talk to him through an intercom--- the door was the size of a bank vault and I could still hear him screaming through that--- we had to stop and stop several times but the first treatment was complete this morning--- we had to go back at 3pm for the second treatment-- went a little better because it was 5 minutes but he does not like this loud "buzzing" noise the machine makes--- tomorrow we are going to being his itouch and play some "Party in the USA" to see if that distracts him-- I HOPE!!! He has 12 more treatments and we need him to stay still--

In between treatments today we did some walking.... FAO was on the top of the list :)--- I can nor believe we made it out of there with NOTHING!! We lunched at Lenny's-- actually took it back to the Ronald.... and then went back to the hospital-- on the way back Grier must have dropped his Ipod when he fell asleep in the stroller--- we did not notice until we looked for it to take into the radiation room-- my mom ended up walking back to try to find it along York Ave--- ( I know some are laughing...) And the luckiest thing happened--- a family found it...called our house in Charlotte-- and Haley told them we were in NYC at Sloan-- The nice woman brought it to security at MSKCC--- and my mom had it back before we got back to the Ronald--- LUCKY Grier!!!

Tonight we went to a Holiday party at the RMDH--- given by MACY's--- it was fun.... they read a story and the kids got the stuffed animal that Macy's did this year--- We are planning on going to the tree lighting tomorrow with the RMDH--- it should be fun -- can't wait to upload pictures---

That is it for now--- Grier is hanging in there-- he opened his "first"square of his advent calendar.... he was funny as we talked about dates in Dec. and when he got to 25 it would be Christmas--- He quickly said I better be home by the time we get to 25!!!

see the other posts about the Cookies for Kids Cancer CHARLOTTE bake sale--- Your help is needed--

Amy

Sunday, November 29, 2009

Two things---

Just wanted to let everyone know we are ready for our extended stay in NYC--- well...... not really but we are pretending!!!! My mom will be going with Grier and I to New York tomorrow. He will start radiation twice a day on Tuesday and it will be 7 days-- 14 treatments all together. I will be updating from NYC -- promise--- I am feeling a lot better! I am hoping that in between treatments Grier will feel well enough to enjoy the Holidays in the City--- there is a lot to do and see this time of year~ After radiation, if all goes according to plan he will have another round of 3F8 ( antibody treatment)- and we will be home on the 19th to enjoy the Holidays at home-

I honestly can not believe how fast our time at home went -- I am pleased to say the Christmas tree is up at our house-- and "some" decorating took place--- I was afraid after 19 days in the city I would not be up to decorating so we did a little now-- :)

Grier loves to check the mailbox-- if you want to send a note please send it to this address--- PLEASE DO NOT send large packages ( there is NO room in the room or in our suitcase--- :) If you must send something.... he likes stickers, coloring books, musical cards, quarters...

Our address in NYC---

Grier Christenbury

405 E 73rd St Room 311
New York, NY 10021

Please see the email below-- I know I have mentioned the bake sale a few moms have planned -- IT is going to be AWESOME--- I am so upset I will not be here to see it!!! They are in need of volunteers to make this a success-- Please help out if you can-- Lots of people and businesses have been working hard to make this a success---!!! I hope someone will be taking pictures from Reid's and Blackhawk so I can see it from NYC---- Thanks in advance for all the hardwork....

Amy

After participating as part of the Go Grier Go! Team at the Cure Search Walk to Conquer Kids’ Cancer, a group of WDS ( First Pres Weekday School) mothers was inspired by the support and community outreach from those who are passionate about finding a cure for Kids’ Cancer. It was also sobering to discover how many children in our community – alone – have lost their lives to or are battling Pediatric Cancer.

Grier Christenbury’s mother, Amy, has provided the following opportunity to raise awareness and funds in an effort to find a cure: Cookies for Kids’ Cancer (CFKC) Bake Sale: Sunday, December 13, 2009 1:00-5:00 PM

A group of WDS mothers have begun the process of collecting donations and obtaining sponsorship from local bakeries and shops, such as Polka-Dots, Edible Art, Suarez Bakery, Dilworth Coffee, and Smoothie King.

Two CFKC bake sale locations have also been secured:
– Reid’s Fine Foods (225 E. 7th St, Uptown)
– Blackhawk Hardware (Park Road Shopping Center)

Both locations offer the opportunity to raise awareness and funds to promote the CFKC cause because of the visibility they provide to the general public.

Amy mentioned that she really wants to have a CFKC bake sale before the end of the year because of GLAD’s - Glad to Give Program and their generous contribution to match the proceeds made from a CFKC bake sale.

The WDS will be the primary source for the success of this bake sale, and we need your help! We have identified a list of duties below. In most cases, we have determined a designated number of helpers needed for each location. However, as far as bakers go, there is no limit!

If you are interested in volunteering, please send an email to Mary Casey at caseymm22@yahoo.com. Indicate: Your top 3 interests, the location (Reid’s or Blackhawk Hardware).that is closest to where you live and you plan to support, and a contact phone number. We will accommodate on a first-come first-served basis and notify you of where your help will be needed most.

Thank you, in advance, for your time and consideration. As the mother whose idea it was to create CFKC says, “If it takes a village to raise a child, it takes the world to fight Pediatric Cancer.” We’re in this fight because every child battling Cancer deserves a fighting chance.

For more information, please visit:
http://www.gogriergo.com/
www.cookiesforkidscancer.org
www.glad.com/gladtogive

CFKC BAKE SALE LIST OF DUTIES
Bake Sale Preparation Helpers

· Volunteers to place promotional signs in storefronts (10, 10 storefronts each)

· Bakers (Unlimited): Please label and provide baked goods on a covered plastic tray.

· Volunteers to provide paper lunch bags and GLAD plastic bags of all sizes (Unlimited)

· Sign-Makers (6 per location):

Direction will be provided.

· Volunteers to offer home as a drop-off location (4) to accept deliveries on Saturday, December 12 from 2:00-4:00 PM and have deliveries available for pick-up on Sunday morning before the bake sale

· Pick-up and Delivery Drivers (6): Needed on Saturday, December 12 from 1-4:30 PM to pick up baked goods and supplies and drop them off at drop-off locations. Clean truck or van is needed.

· Pick-up and Delivery Drivers (3 per location): Needed on Sunday, December 13 from 11-3 PM to pick up baked goods and supplies and drop them off at bake sale sites. Clean truck or van is needed.

· Volunteers to Transport tables and chairs (2): We need someone to pick up tables and chairs and deliver them to the bake sale sites and then someone to return them after the sale.

· Sign-Holders (8 for Reid’s and 8 for Blackhawk Hardware): This is a great duty for older children!

NOTE: We need freezer space! If you have a deep freezer, please let us know.

Bake Sale Location Helpers

REID'S

11:00-12 noon Set-up (3)

12 noon-1:00 PM Set-up(5)

1:00-2:30 PM Station Helper (5)

2:30-4:00 PM Station Helper (5)

4:00-5:50 PM Station Helper (5)

BLACKHAWK HARDWARE

11:00-12 noon Set-up(3)

12 noon-1:00 PM Set-up(5)

1:00-2:30 PM Station Helper(5)

2:30-4:00 PM Station Helper(5)

4:00-5:30 PM Station Helper(5)

Monday, November 23, 2009

13 days later-----

It has been 13 days since I last posted a blog-- that is a lifetime when life is moving as fast as it has been lately.........

I am going to try to catch everyone up. All three kids ended up getting the H1N1 shot and it was not that bad--- they actually did great even Grier-- he did not scream nearly as loud as he does for the shot I give him-- After we finished, Grier wanted to go to school so we took him. Hayes and Grace had a day off that day-- Grier and I ended up not having to fly to NYC on Wednesday-- which was a good thing-- but made life chaotic for a whole week-- I was actually really glad partly because of the bad weather we were having and I had not been feeling great-- The radiation simulation was still pending approval with insurance so it was decided we would just worry about it when we got to NYC on Sunday-- We had a corporate angel flight scheduled for Sunday morning (8am) so at least that part of the travel plans worked out-- or so I thought that week!!! Saturday night around 8pm we were at home and packing with the help of my mom because I was feeling bad-- I was trying to rest and not stress.... and the phone rang--- Yep- Corporate Angels called and told me the flight in the morning had been cancelled-- and we would have to make other plans-- so there went controlling the stress--- I booked last minute tickets on USAIR for Jeff, Grier, and me-- we left the next day for NYC around 11--

We only booked a one way because plans were still up in the air about when we were going to fit in the simulation and start radiation 2x a day.

Monday...... it was definitely a MONDAY--- we woke up and got ready to get to the hospital to start our week of antibody treatment... 3F8-- again I was not feeling great but kept going-- We walked to the hospital around 8 and 3 blocks into the walk I was feeling weak and faint-- so I bought a banana from the "guy" on the corner--- we walked 2 more blocks and got the the corner where MSKCC is and Jeff looked at me and said "Are you going straight or LEFT????" Well-- straight was MSKCC and Left was NY-PRES ER--- I had tears in my eyes and said LEFT I have to know what is going on-- So we went our separate ways-- he took Grier to Sloan and I went to the ER--- I can laugh about it now--- but at the time it was not funny--- After a quick visit in triage and an EKG I was sent back to some area in the ER--- basically I was having heart palpitations and my blood pressure was up and down--- The doctor gave me attivan and I never saw them again until 4pm when he told me to go back to the Ronald and try to avoid stress--- This is the short version--- but I did leave and ended up running into Jeff and Grier as they were walking back to the Ronald as well--- Grier and Jeff did great at the first day of 3F8-- he had lots of help from the nurses--- I knew they were going to be in good hands!

The rest of the week went like any normal day of 3F8--- lots of pain, lots of narcotics to control the pain and lots of hives-- Grier also slept A LOT--- most days he did not wake up until 6 or 7 pm-- Jeff left to come back to Charlotte on Tuesday afternoon and my mom flew in to help with the rest of the week. On Wednesday , Grier ended up needing a blood transfusion so after 3F8 was finished he was transfused with blood. We also had the radiation simulation appointment after the blood was finished... so around 3pm he was waking up from all the premeds and we were going to radiation to make the mold and do the measurements they needed to start treatment... it was a 45 minute process-- he had to lay perfectly still on the table. Two years ago, when we did this he was asleep but this year we thought he was old enough to stay still. He did great but it did not start out so well... he was very upset and after we got him calmed down the process was complete- We got to go back to the Ronald and rest and finish sleeping off the Dilaudid. So, that was our crazy week of 5 days of 3f8 and radiation simulation.

Thursday afternoon Sloan called and told me that radiation would start Dec. 1st--- which was good news. It meant we could be home for Thanksgiving. I made last minute reservations again and my mom, Grier and I flew back to Charlotte on Saturday. We ended up leaving things in our room because my mom made a trip to bed bath and beyond to get some mattress pads for the beds and other things the RMDH is lacking-- The flight home was a little easier because we were traveling a little lighter-

Grier has felt great since we have been home. He is able to go to school 2 days this week. Grier was able to play in the last soccer game of the season--- all of his teammates were great! He had a great time and scored two goals and got his trophy-- he was a little confused because he wanted to play more games but the trophy made up for any bad feelings!!

That is about it for the update-- sorry I did not update last week... I know I have missed a lot-- but did not even open my laptop for the first two days and then when I did the RMDH did something new with their wi-fi so I have to request access--- I have it now so I will update more often when we go back on the first- Our plans right now are to stay until Dec. 19th-- my mom is flying back with us and then we will go from there. Radiation is twice a day for 7 business days. The next week he will do another round of 3f8 --- but as we all know this could change--

This week at home will be spent doing some normal stuff, enjoying Thanksgiving and recovering ( Jeff has been sick too!!)--

Thanks for checking in- see pictures below or on gogriergo.com

Amy

ps--- I am going to post about an exciting event happening in Charlotte-- Some parents from the Weekday School have organized two bake sales to benefit Cookies for Kids Cancer-- They are asking for lots of volunteers so please be on the lookout for the next post about it-- Reid's and Blackhawk have been kind enough to allow them to set up in front of their stores-- they also have lots of bakeries around town donating goods for the sale-- all they need is some man power--- I told them I was sure we could get people to help so PLEASE volunteer-- more to come soon-

Tuesday, November 10, 2009

still not 100% sure of a plan!

I am still here and about 90% sure we will not have to go to NYC until Sunday morning--- I guess I will be 100% sure after 2:40 and I am not on the airplane!!!! Insurance is holding things up-- this is a first-- and I am not sure if they rushed it or what but I will find out on Monday---

So-- tomorrow will be fun.......not really all three are getting H1N1 shots early in the morning-- AND yes.. I was reminded by Hayes... that tomorrow is a day off from school and I am making him get up early to go to the doctor!! After we get that done-- Grier will go to school ...

Tomorrow is the day Grier has to start shots to increase in WBC so the 3F8 will work-- sounds crazy and it is--- I will put a link on here to explain what 3F8 actually is--- He will have these shots every day until next Friday-- and I can assure you he will not be happy about it! Since all of this is rushed I will have to fax forms to NYC and go find the medicine for the shots-- and HOPE there is not an insurance issue with that!

So, the plan now is to fly out Sunday morning... around 8am--- start 3F8 on Monday--- Jeff will fly home on Tuesday night-- and my mom will fly to NYC on Tuesday to finish helping for the week- Not sure when and if they can fit radiation simulation next week-- but I hope it is not any later than Monday--- It could be 4 weeks in NYC---- GULP!

I have been so busy today putting up Halloween--- and I can't help but think I should start bringing down Christmas stuff from the attic---

one day at a time-- ( yeah.. right!! )

Monday, November 9, 2009

I had all intentions of trying to write a blog entry

that did not sound so unorganized--- but as soon as I sat down to type it all hell started to brake loose--- and my mind has been going in overdrive ever since! So... it will be another entry that is all over the place but I guess that is the life we have been living so I should just get used to it!! :)

I will start with Saturday..... it was a great day all around AT the walk--- The Go Grier Go Team did an awesome job raising money for research--- The show of support at the park and in spirit was felt--- and the sea of RED shirts could not have been missed!! We are very lucky to have such a great team--- All the teams raised over $77,000 for CURESEARCH so they can continue research and provide clinical trials so a cure can be found-- Our team raised over $12,000-- very impressive!! Certainly the most touching part of the day was the release of the balloons to remember those we lost to cancer--- last year I was busier with the walk and was up on stage when they were released and this year I was sitting beside a friend and watched those balloons (way too many) fly away ~ It hit me a little harder this year-- maybe because I have known so many~maybe because the damn "R" word is fresh in my mind- When I think about my favorite part of the day I just can't think of one moment--- I love when the kids get their medals-- Grier still asks "WHY do I get a medal?" and when I tell him because he is brave and tough at all the doctor's visits he says OK.... He does not know life any different.... I also loved when the young girl 20 something?? said her name and then said she had been cancer free for 17 years-- I do not hear that story enough... and it was nice to hear after watching all those balloons fly away--- I also loved watching Grier walk 3 laps around the lake--- chatting the whole way with his teachers like he had been in their class all year--- If it were not for the bald head you would not have known he just had major surgery and 2 rounds of high dose chemo 2 months ago-- Saturday was a good day--- and Grier and all of us thank you for helping !!

Today was another Monday for Hayes and Grace but for Grier it was his first day at school-- Yes, you read that right.... Last week, while we were in NYC he got the OK to go to school--- I told him on Sunday and he was ready to go--- he even told me he would do carpool in the morning--- I told him I would like to walk him in the first day--- and he allowed it!! But he was going to do carpool in the afternoon-- I was not worried about him at all-- it is actually a nice feeling to have a such great school-! He had a great day.... he loved music... he loved playing on the playground and he talked about his day and friends all afternoon-- he can not wait to go back in the morning and be dropped off at carpool!! While Grier was at school I was going to type a blog entry and then the phone rang-- I have a love/hate thing with caller ID--- honestly I hate to see MSKCC show up-- because it makes my heart drop.... and this morning was no different-- I was not expecting bad news but I think I was feeling very normal after taking Grier to school and that was a quick reality check~ When I answered I heard the familiar voice of Dr. Kushner's assistant -- she asked if I had a minute... which was a new question from her and I said yes-- then Dr. K was on the line. This was a first-- I usually get quick emails but no phone calls-- so I sat down to listen... I will cut to the point but he wanted to know if Grier could come to NYC this Wednesday for Radiation set-up-- they make a mold of his body and tattoo him ( yes.. real tattoos not a sharpie) ~ I was thrown a little because I had not heard the tests results or the plan and I was thinking at the earliest we would go to NYC on Sunday night to start 3F8 ( antibody treatment)-- so, after I asked him a ton of questions I said I guess we can come--- well-- that started the day of trying to book a flight etc.... and then I get the call that it may not be approved by insurance etc. etc. So, I was a little frustrated because I can not book air travel without a plan-- and I don't have a jet in my backyard just waiting--- and I am not in NY-- but CAROLINA---(sorry that really was what he wrote in my email) And I really thought we would be home for a week-- My plan was to fly up with Grier on Wednesday-- and fly home on Thursday night or Friday morning-- And if we start antibodies then I would fly back on Sunday-I can hear some of ya'll now-- WHY does she not just stay in NYC---? Well.. I would but when we fly back for antibodies it will be followed with 7 business days of radiation and possibly followed by another week of antibodies-- And I am looking at my calendar and all I see is mid NOV--- and DEC in NYC-- probably some people's dream but not mine and not Grier's-- we like to be in CAROLINA-- :) So, it is Monday night and after a DAY of schedule changes I know nothing new-- maybe tomorrow we will find out if we fly to NYC on Wednesday-- this is the stuff that drives me crazy! And trust me this is the abbreviated version of the phone calls that went on during the time Grier was in school and this afternoon-- There is one good thing going right now-- IF they get us on the schedule for Thursday we have a corporate angel flight to go up to NYC--- We also have a flight for Sunday morning--- but it all depends on them-- and after all these months I still have a hard time not being able to have some control of this situation!

As you can see we are still rolling with this new normal-- maybe the next entry will have a plan -- who knows... all I know is Grier is going to TK tomorrow and I will hope for a less chaotic morning and some answers to where we will be this week and next and Thanksgiving-

Friday, November 6, 2009

A CRAZY WEEK---

We are back from NYC-- I know some are wondering why I have not posted anything in awhile so I thought I would do a quick update-- Grier had 2 days of tests in NYC-- the same ones he always has so nothing was out of the norm. He was a trooper as usual-- I really can not explain what he actually has to do in a short amount of time--- you would be amazed! And the best part is when he leaves the hospital doors he seems to be OK-- He likes NYC for a few days at a time-- actually I like it for a few days-- so this trip was almost perfect-- we arrived Monday at 6pm and left Wednesday at 7pm-- I do not know any details of the results-- We have to wait on those to see what clinical "trial" Grier can participate in-- That is the part that makes me crazy-- there is nothing out there better than a "trial"! I am not going into details but we are in for a long couple of months with lots of NYC trips-- and the hard part will be to balance NYC life with CLT life because that is just as important~

Tomorrow is a big day for the Go Grier Go team--- we will walk and participate in the 2nd annual Milestones Walk at Freedom Park--- Our team is almost 200 people strong this year and there are several people on the team that have raised over $500 on their own-- That is AWESOME!!! The only way we are going to end this madness is through research so they can find a cure and I am proud of our team for stepping up and making a difference- I got an email from someone and they said they walked in the Avon walk and it raised Millions and she hoped someday that would be the case for pediatric cancer--- I agree but until we ALL make kids a priority than it will not happen--- I think the nicest thing you can do is help raise awareness in honor of a child-- There was a bake sale at the Rogers home last weekend-- they raised $200 for Cookies for Kids Cancer in honor of Grier-- I hear they had a good time doing it-- It is those things that make me smile-- Thanks to all that helped!!!! I was also told of a bake sale in the works-- and it sounds like it will be awesome too--- this helps me more than you know !

Watch this video-- I promise it will inspire you to make a difference --- I get asked all the time if I need something--- and I don't know what I need most of the time and sometimes I need things that no one can give me but by doing things like having a bake sale helps me by knowing that you are in this fight with us--www.youtube.com/watch?v=Lr03uNt4dLk-

I have a new brand I love and that is GLAD--- finally a company to step up and make a difference for children-- www.gladtogive.com --

Thanks to all those who are walking in person or in spirit tomorrow in Charlotte-- I hope with increased awareness and funding more kids will reach their MileStones without dealing with cancer and the side effects from the current treatments available-

See ya'll at 9:30am --- if you are coming to stroll around the lake- more to come later---

Amy

Sunday, November 1, 2009

Next on the Agenda!

We are packing up Halloween Stuff around here--- no time to waste because we are leaving tomorrow for the Big Apple-- Halloween was fun but very WET--- I can not believe we even attempted to trick or Treat in a downpour--- As we were walking up towards the haunted garage, Grier said "Do you think the creek will flood again??" That might tell you it was not just sprinkling!!! He ended up having a great time-- even though he said it was the worst Halloween EVER!

Laundry is getting done around here and lists are being made so I can leave with Grier and my mom to head to NYC-- we leave tomorrow around 2:30--- We do not have to go to the doctor tomorrow so who knows what we will do when we get there-- Our day will start early on Tuesday-- and we fly out Wednesday night-- not too bad!

Not quite sure if I am taking my laptop this time--- I have heard there is no service at the Ronald so I may just avoid the headache--- so if I do not update that is why---

AND finally--- Go Grier Go T-shirts for the Milestones walk are here -- and sorted-- Melissa Bond has the shirts that will be delivered to the WDS-- And I have a big box in my house-- Jeanna has offered to bring the T's to the walk on Saturday morning-- if you would like the shirts before I will put them on my porch on Thursday and Friday-- when I get home-- !

Thanks for all the emails lately-- I have been very slow to respond-- but I have gotten them!

Go Yankees!!!

Saturday, October 31, 2009

Happy Halloween!

Thursday, October 29, 2009

The revised version!

OK-- I try to keep this blog as honest as I can-- but I am not sure most really do not want to hear all the details of the pediatric oncology life!!! After many revisions..... here is how today has gone-

Grier and I left around 10:30 to go to the hospital for his MRI-- Hayes and Grace were out of school and luckily my mom was off from work-- or this schedule was going to be near impossible-Hayes and Grace are getting the shaft each day as this schedule is taking a toll on all of us--- Lately, I have had to cancel school conferences because of a Hospital Stay, leave one or both at home after school and I am always forgetting something-- "surviving" is what I like to call it-- it is not multi-tasking because it is not intentional--- I am always playing catch up because the plan I made 30 minutes prior is messed up by a fever or something new that lands on the schedule-- I have not had too much compassion lately with schedule changes.... and I am not surprised. There really has not been a handful of days in the last month and a half that we have not spent the entire day at the doctor's or were in patient at the hospital-- hard to believe?? The other thing is that with these appointments no one asks me if they work-- it is not a choice-- it is scheduled and you just go-- I guess I could be like the rest of Charlotte and bring them to the LCH lobby and let them hang out-- that has become the daycare of the hospital--- and in my opinion if the "swine flu" is airborne than the under 18 group should not be in the lobby either-- since that is the only way to get to the floors!

Today was no different-- not sure what happens in radiology but being on time is just not going to happen- We waited 3 hours..... I was asked by 3 separate people about the history I just filled out on the profile for Grier--- and by the time it was time to go to the MRI machine--- Grier was DONE- he was fine when we got there but after 3 hours and all the explanations of what has gone on the last months and years and what was going to happen during the MRI he was DONE--- at the very end he just sat in my lap and cried-- very unusual for him to do-- but since he knows so much and listens so well--- he was thinking they were going to put in an IV while he was awake or use his port--- of which neither happened--- he had to breath the gas and then he fell asleep and they used a breathing tube-- which I hate for them to use-- but because they said 4-5 hours that was what they wanted to use-- and guess what-- it was done in 2! BY the time I got to recovery I was asked a zillion more questions about his "cough"--- well.... he did not have a cough before I gave him to you-- and all of a sudden I heard the "cough" and it was low. deep and wet--- I told them this is not how I left him-- and they called Anesthesia-- then it always gets into well-- has he been around anyone that is sick-- ??? And when did he have this lung surgery??? AND the BEST question of the day was.. WHY DID HE HAVE THIS MRI ANYWAY??? I answered no... except for his in- patient stay last weekend at the hospital-- and the surgery was over a month ago and we have not had any issues until now- and I had to bite my tongue about the WHY??? --Obviously he has cancer DR. and we were following up after 2 rounds of chemo!! All questions the 3 asked before the procedure--- He slowly woke up a little and they did chest compressions on his back to break up whatever was in there-- he was waking slowly and very "drunk"-- but we left-- he was awake enough to want a Bennie baby at the gift shop-- so we went it there to choose the new stuffed animal!!! While we were in there and looking he scooted to the edge of the stroller and when I turned to get the animal he wanted he fell out and onto the floor!! The lady was so surprised and he was just laying there and looking at us-- I knew he was alright and I just put him back in the stroller and paid for the animal--- ahhh--- just another day for us!

We got home around 5:15-- looked at a few emails and saw some good news-- with the help of a friend, our seats on our flights are not middle seats all separated anymore-- and we did not have to hope for someone to be compassionate on Monday afternoon! Thanks Deborah for that help!!! :) I was already planning for the three of us to wear masks on the plane in the hopes that someone would just not want to sit next to us and then swap seats!! We went to dinner-- something we have not done in awhile -- pizza at Luisa's --- I was actually out voted--- I just wanted to stay home-- but since we have not all been out in a long time I caved--! As soon as we got there Grier was shaking--- said he was cold and all of a sudden there goes dinner--- we did hang in there to eat pizza but left as soon as we could-- Grier was still saying he was cold and when we got home I checked his temp--- 101.2! FABULOUS--- just when I thought we were done with fever admissions---- I called and because he counts are OK-- I was allowed to give him Tylenol and wait.... we have to go in the morning anyway--! Hopefully we make it all night in our beds and this was just an anesthesia fever!

I guess the details... ( and trust me they are not the whole story) should give you some sense that this is hard as S@#$! And unless I figure out a way to clone myself--- things will just get cancelled or missed-- I honestly need to see if Blue Cross Blue Shield will pay for a full time mommy because I am the full time nurse these days----!! I will let you know what the case manager says to that!! :)

Tomorrow is another day (we actually go to the clinic)... I am hopeful it will be a little easier and that fever will go away -- Halloween is Saturday and I will be so mad if he has to miss it again!! Two years ago he was in PICU at NY Presbyterian on Halloween and it was not fun!!! We have tickets for NYC and they are non-refundable ( and trust me... the airlines don't care if I tell them we can't come because my child is in the hospital because of cancer-they don't have a policy for that!)-- I also just want to get this next step going so we can get a plan of some sort what life will be like in the next 2 months....NOVEMBER and DECEMBER! I have a feeling what it will be and I just need to prepare for the craziness NOW!

PS-- As we were driving home from dinner... Grier announced that he wanted to live at the beach because there are NO DOCTORS there! That about sums it up!! He did add that if he needed a shot at the beach I could do it :) That must have been the fever talking--

Wednesday, October 28, 2009

We got released from the hospital on Monday Night--- after a quick recheck of his counts they went from .7 to 2.0--- so they let us go home to sleep in our own beds!! Tuesday we just hung out at home and regrouped--- !! I also made flight plans.. Ronald McDonald reservations and worked on our schedule for NYC--- I begged them to change the original date-- and you guys that know Sloan- know that getting anesthesia lined up is hard-- especially last minute... so when I asked her to see if she could change our days I was a little nervous she would just laugh at me.. but she said she would try and she did-- Since she was able to do that I can say we will be at the CureSearch Walk on Saturday-- :)

DAY 17.... that is what today is called--- it is 17 days since the first day of chemo of round two!! And it was a good day... we went to the clinic today and did the usual check up and a blood test-- his counts have recovered nicely and we did the last shot tonight--- I say LAST... but I really mean last for NOW--- :( Tomorrow we go to LCH for a Head and Spine MRI--- it will be LONG-- but he will be asleep and recover in the recovery room after he is done-- I hope we are home by 4 or 5-- Grier has asked a ton of questions today about MRI's so I am positive he is ready--- he may even tell them how it is done tomorrow--- On Friday, we will go back to the clinic and have his blood counts checked again--- just to make sure all counts are OK before we head to NYC on Monday afternoon- When we get to NYC he will have an CT on Tuesday, MIBG injection and on Wednesday MIBG and Bone Marrow test-- We are going to fly home Wednesday night- It will be a quick trip but I know we will be there longer in the near future.

Enjoys the new pictures.... other than the normal craziness all is good at our house right now!! Even the dog was a little pampered yesterday by the mobile groomer!! I told a friend I was jealous my Dog was getting a facial and not me!!! But Tucker sure does smell better :) Grier feels good--- he is eating better without the help of drugs and very active-- he told me today as he was playing soccer that he was ready to get on the soccer field!! Thanks for all the notes and meals -- they have been very helpful and are very much appreciated!!!

Monday, October 26, 2009

Grier is still a resident at the resort we call LCH--- he has not had a fever since Thursday night when he was admitted--- His counts have gone up from .1 to .2 to .3 and today they were .7!!! His blood cultures have all come back negative --- BUT we are still HERE! He did have to have another platelet transfusion this morning --- Every few minutes he says.. "I just really want to go HOME"--- mom can you tell them we are going home--- I wish it was that easy--:)

Being here this past weekend help the craziness of juggling Hayes and Grace--- Jeff was able to spend Friday and Saturday night at the hospital and I was able to be with H &G-- Also we had my mom helping and lots of visitors so the weekend seemed to go by quickly!

We have officially started the "work-up" after the 2 rounds of chemo--- Grier did a urine test last week-- I now have the least amount of confidence in that test.... he also had an echocariogram on Friday--- This Thursday will be a BIG test-- He will have an MRI of the head and spine-- it will be under anesthesia and will last about 4 hours plus he will have to go to recovery-- It will be another long day at the hospital-- And we are waiting for final word from NYC -- we need to have the MIBG and CT done there next week as well as bone marrow tests-- The whle thought of going to NYC right now makes me crazy-- I feel like we have not really been home and now we are getting ready for the hardest part of this next part of the treatment---

Here is a brief update on the Milestones walk--- our team is very strong and large--- :) I think the last number I saw was over 100-- I want to challenge everyone that has signed up to walk as a walker or in spirit to send 10 emails to your friends--- ask then to pledge $5 or $10-- With a team our size even the smallest donation will make a difference if everyone asks 10 friends! The t-shirt order has been placed-- Thanks for all the timely orders... If you want to help distribute them email gogriergo@att.net--- Most likely I will be gone so I will need lots of help getting the shirts to people-

That is it for now-- Hopefully the good news will start coming in from the work-up and we will be back from NYC before we are even missed!! Ha!Ha!

Friday, October 23, 2009

fever---

Grier is at CMC because he had a fever last night.... because he is neutropenic.. ( see explanation..) we have to go inpatient-- it is better safe than sorry--- it is much more than feeling bad...

I knew this was coming-- it is day 11 post chemo and it happened day 11 last time-- so we stay at LCH until his counts start to recover -- the "g-shot" will help this happen- He is not so thrilled with the idea of another sleep over-- last night was a little long due to the fact we did not get to LCH until 9:45-- and around midnight we could finally settle and think about going to sleep-

Neutropenia

From Wikipedia, the free encyclopedia

Neutropenia (adjective neutropenic), from Latin prefix neutro- and Greek suffix -πενία (deficiency) is a hematological disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell, in the blood. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

If you did not see the blog about the walk T- shirts--- please look at it .... if you are interested I need to know the size you need by Sunday-- If you are new to paypal... here are some tips--- ( thanks Natalie!!)

Go to www.paypal.com

Go to Account Login, enter your email address and PayPal password then hit Log In

If you don’t have a PayPay account, click on sign up. It is very easy and you can choose different ways to pay – checking account, credit card

After you have Logged In, click on the 2^nd blue tab at the top of the page that says “Send Money”

Where it says “To” type in gogriergo@att.net

The amount you want to send

The button will automatically default to “goods”

Hit Continue

You then get a message that your money was sent to Amy and you are finished!

Thursday, October 22, 2009

Want a Team Shirt to wear for the Milestones Walk???

The Go Grier Go team will be wearing red shirts this year for the Curesearch Milestones walk on Nov. 7th----

IF you want to order a shirt-- please email gogriergo@att.net with the size or sizes you will need--

Youth S-L

Adult S-2XL

ALL shirts are $10 each--

You can pay online with paypal-- email address gogriergo@att.net or by check made out to go grier go when you pick up the shirts!! ONLINE will be easiest for ALL!!!

I MUST HAVE YOUR ORDER BY SUNDAY, OCTOBER 25th--- to make sure shirts will be here in time for the walk-

IF you are not walking and would like a shirt--- please email gogriergo@att.net-- We will get them to you--

Sorry for the close deadline--

Amy

Wednesday, October 21, 2009

"Today was definitely a LONG day"

I wanted to do this Blog early before I forgot all the crazy details of this day.....

We got to the clinic at 9:30--- and for the first time in a LONG time I did the valet at the clinic--mainly because I am so tired of driving in the parking deck-- I swear I need a smart car to fit into those parking spaces... and the other day I decided I was just taking 2 spots.... it was going to be easier to get Grier in and out-- so I DID!-- Well-- some woman who had nothing else to do decided to scream at me --- She was mad I took two spots ( I was on the 5th level!!)--- I smiled at her as I loaded Grier into the stroller and turned it to face her and said-- Have a GREAT day! Anyway... that is why I needed a break from that awful parking deck near the clinic-- BUT that was mistake number ONE----

They accessed his port in clinic-- gave him the "G-SHOT"... and Dr. M looked in Grier's mouth---- ( he has a mouth full of sores....YUCK--- they are from chemo and he has chewed the inside of his lip a little--- really not a problem for the normal person BUT a HUGE problem for someone who does not have an immune system... like Grier!! Dr. M gave me another prescription called magic mouth wash to help with the pain-- I decided to take it downstairs to the pharmacy to get it filled while we waited for his lab work to come back--- After all this we went back up to the clinic and found out that he needed red blood and platelets--- Arrgh--- I knew that takes at least 5 hours--- if everything is running well-- We tried to start platelets but the infusion room was FULL-- so we went back into an exam room-- not a big deal--- unless all of a sudden your stomach starts cramping and diarrhea happens--- REALLY?? I never saw that coming-- I was a little worried I did not have any extra clothes since the restroom is really far away from the exam room-- so I asked for a pull-up and all they had was a 2-3---- surprisingly it fit-- snug... but he could get it on :( That would be MISTAKE #2--- not being prepared!! Finally we were at a point we could hook him up to the platelets and start-- we then had to walk over to the Day Hospital to finish platelets and start blood--- Well--- it is 1 at this point and I am doing the math with the time and wonder how I am going to get my car from Valet in the other building-- Everyone was very nice and said security would get my keys but I would have to walk Grier back over to the clinic after the infusion was done--- All I could think about was the under 18 rule!! It was going to be an obstacle-- !! Grier continued having stomach problems but luckily we had a infusion bay close to the bathroom--- I finally called to get Imodium--- BUT that was the next obstacle--- I could hear our nurse call pharmacy to see when it was coming and the last time I heard her say-- it has been over 3 1/2 hours--- ! It had--- I told her I was going to move my car from the other building to the deck closer to LCH and while I was there I was going to buy some Imodium from the pharmacy! She said-- I am calling to tell them what you just said--- and she did-! I left and almost ran to the clinic to get my car and the Imodium while Grier hung out getting blood with the nurse-- As soon as I got back-- guess what was on the counter.... Imodium!! So, we now have two bottles to add to the collection!

As you can see by the pictures you can see that Grier perked up --- He looked really bad this morning and after the transfusion he seemed to be feeling better--- except for his mouth-- We finally left the Day Hospital at 6:35--- And as soon as we drove in the driveway.. Grier said, " That was definitely a long day!"

The good news of the day was that we have a T-shirt design for the Go Grier Go team --- I am going to post it as soon as I can and I am going to need a QUICK response if you want to get one-- I will put all the info out on the BLOG or CB as soon as I know--- This is not a MUST if you are walking -- This is also not a FUNDRAISER--- It will just be a team shirt to wear on Nov. 7th--- I can't wait to post it because it looks pretty cool! So... think about sizes you will need so you can get back to me ASAP as soon as I ask for the info---- NOT NOW!!!

And on the dishwasher front---- it was put in today!!! I had lots of help today between Nancy picking up Grace, Michael coming to my house to meet the dishwasher guy, Jenny dropping Hayes off, and dinner!!! Thanks---

What a DAY!!!

Amy

Tuesday, October 20, 2009

We are still at home at hanging in there--- Grier felt great for most of the weekend-- It was a welcomed change... his appetite was good as long as you were getting anything he was asking for to eat!! We went OUT of the house on Sunday for a quick outing to see Cake Boss make a HUGE Nascar car cake--- He had fun... but Grace really seemed to like it-- It was just nice to go somewhere !!! He is begging to go to Target-- he asks all the time if his counts are high enough to go!!

He and I went to the clinic for a quick visit and to check counts on Monday morning--- His counts are dropping and almost at 0!!!! I was really hoping for a quick visit to his class but was advised otherwise-- and it turns out it is good that we did not go visit-- Even a cold is not good when you are nutrapenic! So.. I went to have my car serviced since the "light" had been on for awhile.... my mom hung out with Grier and I thought it was going to be a quick service--- until the guy said, Mrs. Christenbury.. I have some bad news-- I thought of course you do--- he told told be we needed new brakes and I said OK-- is that it???? He just doesn't know bad news!!! After the car dealer I had to quickly find a dishwasher--- since ours broke on Friday night and deemed not worth repairing--- :) Two things I could fix without much effort--- The biggest problem is juggling it into fitting in our hospital/clinic schedule-

Grier has gradually gone down hill since yesterday--- energy level.... appetite... and mood--- I think he will need a blood transfusion tomorrow-- he seems pale and tired-- He stills says some funny things--- Today he was feeling his head and I asked him what he was doing? He told me he was checking to see if his hair was coming back yet--- and then he said... "Do you think it will be blonde or black?" hmmm??? I am think brown but you never know! :)

So many nice things have happened to Grier and our family lately-- I am not going to list them all but thank you for everything--!!! I know I will never be able to keep up with thank you notes- so please accept the blog as a GIANT thank you-

Shots start tomorrow-- I am wimping out and taking it to the clinic for them to do-- the last time was not so great at home--- ( it took 3 pokes for me to get it in the skin--- Grier begs me to do it--- but I am not great at it-- :) I am hoping for an uneventful clinic visit, no fevers and a dishwasher delivery --- not too much to ask... right?

pictures--

Grier doing his "homework"---

Grier and Grace at the convention center to see Cake Boss-

Grier with his favorite cake--

Grier hanging out at home--

Friday, October 16, 2009

TGIF!

TGIF! We made it through this week of chemo~ The best part is that we only spent two nights in the hospital... got home by 3:30pm on Wednesday... and have slept two nights at home!!! Not bad for the way it has been working out lately--

Grier feels good-- I would say great but he gets waves of feeling queasy and has had some headaches that bother him. These side effects are totally different than the first round--- I am hoping this goes away this weekend as we get away from the poison that has run through his little body all week! He has really surprised me this week with the way he has taken this new routine and gone with the flow--

We are now on the part of the schedule that we call "fever watch"--- his counts will drop to 0 and we will have to start giving shots again on Wednesday to increase his counts-- we will also have to monitor his blood and platelet counts because he will likely need some transfusions- MOST likely we will have another stay at LCH if he gets a fever--- but we can always hope his counts will recover before this happens! We will probably find out Monday when we go to NYC for scans-- and then what the plan will be from there-- I am anxious to see what they say and see if Grier can get back to being a normal 5 year old--

That is it for now-- we are going to enjoy the weekend !

Thanks for checking in and THANKS for signing up for the food tidings plan

http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=45f1fdb7-57c5-40f3-b006-a284cb80fffb

--- I talked to Jeanna and we will add more dates as I find out the next plan of Grier's treatment-- especially if staying in NYC for a long period of time is required-

Amy

Wednesday, October 14, 2009

Wednesday???? How did that happen? Monday night was as long as I had hoped it NOT to be-- They started Grier's chemo at 6:30pm--- so he had to pee hourly until 2:30am~ He was pretty funny until midnight when I was so sleepy and he was asking me a ton of questions about rolly pollies! We had just watched Sid the Science Guy on PBS-- The 1:30 and 2:30 pee collections were a little hard-- he was in deep sleep and when I would try to stand him up his legs were like jello-- but we made it through- and slept until 7:30 before our day started again--

Yesterday, Grier felt really good in the morning and most of the afternoon-- we went to the playroom to play the wii and he played a few games of trouble--- We had some visitors -- And my mom came to stay with Grier a little so I could go home and be with Grace and Hayes-- Late afternoon came and so did some side effects from the chemo-- he felt pretty crummy-- Jeff and I did the switch and by 9pm Grier was perking up a little-- not eating but wanting to play with his new toy! We had to do the hourly pee collection again last night but this time it was a little longer because I could not get him awake enough to go at 2:30-- so we waited another 45 minutes and he went and he is done with Cytoxin for this round! He woke up around 8am and is not feeling the best-- no appetite and just hanging out watching TV-- looks like that is not a bad idea from what the weather looks like from the 11th floor window--

He has to finish the infusion that started around 6 last night and runs for 24 hours-- and he will get the 3rd dose of irenotecan today around 3-- then if all goes well---- we can go home to sleep in our own beds tonight--- We have to finish the other infusions on Thursday and Friday in the clinic this week-

Please see this note from Jeanna---

Friends wanting to provide a meal click on Food Tidings under the account Go Grier Go! Amy finally agreed it would be very helpful for her family! Thanks http://www.foodtidings.com/SignUp.aspx?ScheduleGuid=45f1fdb7-57c5-40f3-b006-a284cb80fffb

Hopefully the next update will be from home -- I can not believe we are almost finished with the two rounds of chemo and almost ready to go back to NYC again for scans-- the weeks have flown by -- Time flies even when it is not fun!

Monday, October 12, 2009

Two Updates in One day!!!

Well-- forget my first post today--- We got to clinic about 9:30--- and did all that we needed to do--- His counts were high enough to start chemo so we headed over around 11---- And Chemo started around 5--- Seriously-! The chemo that requires so much monitoring did not start until 6?? so it will again be a long night at LCH-

Grier is in a great mood to be in the hospital-- maybe he is used to this new routine--- who knows! He has been playing with playdoh and decorating cupcakes--- ( see pictures) And he is sporting his new skull hat :) Thanks Caldwells!!

The last picture is of the dinner I made yesterday-- I thought I was doing well--- planning for the week and ready for this craziness--- BUT burned the white chicken chili while I was reheating it for dinner tonight!!~ so it was a take out night for us!!

I got a feeling!

I am sitting here listening to one of Grier's new favorite songs, I Got A Feeling by the Black Eyed Peas--- and hoping that tonight will be a good night~

Grier and I have to go to the clinic this morning to check his blood counts-- if everything looks good we will be admitted from clinic to start the 2nd round of chemo--- I would like to say last round but I do not want to be too positive ( NYC will decide that after this round - we go to have scans in a few weeks)-- The plan is to start as soon as we get to Levine's ( or better yet as soon as pharmacy gets the chemo to our room--) I know they know I am not letting them start chemo at 10:45pm this time-- so that is why I am hoping for a good night! We should have "two sleeps" at LCH and then be able to leave after chemo on Wednesday -- we can finish the remaining 2 days in the clinic-- I am also hoping the irenotecan aka ( "I run to the can" will spare us that side effect this time!!)

I am way behind on emails and other things--- that is just what happens when you are trying to take care of a house, kids, dog, etc. meanwhile going to the doctor almost everyday last week!

We had a pretty good weekend-- Grier was excited to get to go to Grace's soccer game--- he said " Are my counts good enough to go somewhere?"--- Since we were outside we thought it would be fine-- He was surprised with an Alabama Jersey and a car visit from Leila-- he has not taken off the jersey since Saturday-- and our house has the Halloween look now with the help of 2 BIG blow-up pumpkins that Brandi and Rob brought over! We also had a wonderful dinner from a friend that I met through my NY friend, Gretchen ( Liam's mom) and lots of yummy cookies that Thomas and Neil's family brought-- as well as another bag goodies from Zeke-- the binoculars are in the bag to go to the hospital ( so we can spy on people from the 11th floor of the children's hospital) Now all we need is a front room so we can see the creek and Kings Drive!! Also a special thanks to Chris and Kristin Kouri for raffling off an item in honor of Grier at the auction she was putting together- Thanks to EVERYONE-- and excuse this public thank you note but it is the best I can do right now!!

If you have time check this bog out today--- here is the link and I think you might recognize someone in it--- Don't Eat the Shampoo -- Philosophy has added another flavor since the Oatmeal Raisin sold out--- but they still donate 100% of the sales to Cookies for Kids Cancer- Makes a cute gift--- and makes bath time fun--- Grier loves smelling like a cookie after bath--- :)

Another exciting website to look at is Glad to Give--- Glad has partnered with Cookies for Kids Cancer and taken the bake sale to a whole new level!!! They are also matching funds raised from bake sales --- The pictures from the bake sales that Glad has done are amazing-- if you are on facebook join the group-- you will not be disappointed-!

Sunday, October 11, 2009

Join the Go Grier Go team today---

Hello everyone!

The purpose of this post is to let you know about an exciting cancer walk that we will be participating in again this year in honor of Grier’s fight with Neuroblastoma as well as every other child’s fight with this awful disease. The 2^nd annual Cureseach Milestones Walk in Charlotte will take place on November 7th. Our team name is “Go Grier Go.” We would LOVE to have a nice large team join us for the walk. Please think about organizations you belong to and encourage them to join our team or make their own team—school, church, youth group, teams, service groups, moms groups, sororities, preschools, and work—This is an easy way to make a difference for children fighting cancer- If you would like to join us and be a part of the “Go Grier Go” team, it’s easy to register online. Here are all the important details:

Who? Anyone that wants to be a part of “Go Grier Go” team and support research for childhood cancer.

What? “MileStones” is the CureSearch Walk for Childhood Cancer. It is a pledge walk that unites people in the fight to reach the day when every child with cancer can be guaranteed a cure.

Where? Freedom Park, 2435 Cumberland Ave., Charlotte, NC 28203

When? Saturday, November 7th, 2009~ Registration and Check In @ 9:00am & The Opening Ceremony and Walk @ 10:00am

Why? To increase awareness of childhood cancer and to raise the revenue needed to support the life saving research conducted by the Children’s Oncology Group. . Proceeds from the walk will benefit CureSearch: National Children’s Cancer Foundation. The NCCF provides funding for the vast majority of pediatric research programs at the top 200+ children’s hospitals, including all local children’s hospitals that treat our youngest cancer warriors.

DID YOU KNOW:

Each year over 12,500 children and teens are diagnosed with cancer, the equivalent of two classrooms a day. Childhood cancer is the #1 disease killer of children, more than the next four childhood diseases – combined! Although the survival rate for childhood cancer has greatly improved over the last 30 years, still today as many as 1 in 5 children will die of their disease. Those who survive their harsh treatments are often left with life-long serious and life threatening side effects. But there is HOPE. Through research we can reach the day where all children diagnosed with cancer are guaranteed a cure.

Childhood cancer does not distinguish by demographics; there are childhood cancer warriors and angels throughout all our communities. Too many families in our area have been directly affected by childhood cancer. We are united through the Milestones Walk to raise funding for childhood cancer research as well as raise awareness of its devastating effects on children and their families. We now ask that you also join us in our fight against childhood cancer.

How do I register? It’s simple to do online! Just go to: Go Grier Go Team @ milestones walkand click on the green rectangle that says, “Join a Team.” Then type in “Go Grier Go” in the team name box. Follow the instructions from there. It only takes about 5 minutes to register! The registration fee is $10 /per person attending the walk--

I want to be a part of the team, but I don’t live in the Charlotte area? No problem! We’d still love to have you join “Go Grier Go” You may register on the website as a “virtual walker” and still help raise funds for CureSearch.

We really hope that you are able to join “Go Grier Go” for the CureSearch MileStones walk. If you have any questions please feel free to email me. Thanks!

Join the “Go Grier Go” team today as a walker or as a virtual walker AND commit to asking 10 friends for a pledge ~no amount is too small—Together we CAN make a difference in Pediatric Cancer-

Amy and the rest of the Christenbury Crew-

http://www.caringbridge.org/visit/grierchristenbury

www.curesearch.org

www.milestoneswalk.org

P.S. We may have team t-shirts made for the race. When I have more details about the t-shirts I will share it with you.

Thursday, October 8, 2009

Another Day at the Clinic!

Yesterday we went to the clinic and had Grier blood count checked--- he was OK but his platelets were low--- we could tell this before the lab said so because it took some pressure to get the port to stop bleeding.

Grier and I left and have been hanging out at home-- he is so funny... He asks if his counts are still low everyday... and I finally asked why he was wondering and he said because I want to go somewhere!! He also has been watching lots of TV and commercials and his want list is growing by the second-- I told him he needed to get a job for all those things he wanted and he told me he couldn't because his counts were low and he can't go anywhere!!! hmmm.. I said this was a whole new experience with a 5 year old!!!

We are on our 3rd night of giving the shot he needs at home-- last night we had a little issue of getting it to stop bleeding because of the low platelets and we always have the issue of the high pitched screaming that makes me a little more nervous than I already am--- Hopefully, tonight will be the last night for a little bit until next round-

Last night was a little crazy. Hayes came home early from his baseball game not feeling well-- I knew it was going to happen sooner or later but I was hoping we were going to escape the "stuff" going around--- He ended up staying home today because he does not feel well-- and has flu-like symptoms except for a fever--- so we are doing our best to keep everyone separated--

enjoy the pictures-- they were taken today at clinic while Grier was getting a transfusion of platelets-- He worked really hard painting a witch--- He is very into Halloween decorations and has been begging me to get ours out of the attic-- I am slowly getting there !!! I will work on that this weekend because it will be here before we know it--- The picture of him without the hat was taken because he looked at me and said-- I think I want to take my hat off--- I said OK-- and he said but what about this???(He was pointing to his bald head)-- So... I decided to take the picture of him and show him it is still Grier--- and he said that he looks like Hayes-- !!

Thanks for checking in-

Amy

Tuesday, October 6, 2009

Re-Entry

Re-Entry....... Anytime you go away from your normal routine it is hard to come back to reality. This weekend was no different than any other time except we missed having Grier with us in Charleston. Hayes and Grace had a great time this weekend and I think it was exactly what they needed ( neither of them wanted to come home!)-- and I enjoyed being with both of them without having to worry about if something was going to happen--- Grier had a great weekend too--- He was well taken care of at the hospital by my mom as well as many visitors, Susanne & George, Bill & Ross-- they "babysat" him so my mom could shower!! He was very busy painting this weekend and I have a stack of new pictures. He also has a new litter of kittens-- I am sure the gift shop loves that he is a patient!! He called early Sunday morning to tell me he wanted Grace's team to stop winning--- he was ready for us to come--- I guess he thought we were there to stay until they lost-- I told him we were coming home Sunday no matter what--- Grace's team ended up winning all four games and were the winners of their age group!! We headed home after the girls got their medals --- I was really hoping to head to our house-- but Grier's counts had not gone up enough for the docs to feel comfortable with discharging him-- so when we got home Jeff went up to the Hospital to see Grier for a little bit-- I packed another bag so I could stay the night at the hospital and got Hayes and Grace ready for school and bed-- And in a split second we were back to passing each other in the hallway and updating by cell phones-- As I got back to the hospital I saw another mom with her daughter doing to the same thing our family was doing Friday night--- standing on the corner and waving up to their child who was at Levine---- I know that not allowing kids in the hospital is a good thing right now for the protection of the patients but it is really hard-- we can not eat as a family like we used to and I have to leave H&G home a lot as Jeff and I have switched places-- Monday morning all was the same-- Grier's counts were still the same-- his ANC was almost nothing--- and we were really just waiting for his counts to start to recover.... he had not had a fever since Saturday and every test was negative. Even the flu test--- :) The decided we could go home--- so we did! Grier's hair starting falling out this weekend and by Monday it was REALLY bothering him--- he would lay down and end up with his whole shoulder area covered with hair-- so we decided it was time to cut it- He was OK with the idea and we talked about new hats and such --- Jane emailed me and told me that Neil ( her husband) was off today.... he works at Salon on Selwyn and would come to our house if we wanted him to--- it was perfect timing and since Grier still has no immune system I felt better about not having to take him out in public--- Neil came and gave Grier his latest buzz-- After Neil left Grier was a little quiet and then the quiet turned into to crying--- HE said he was NOT going to school looking like this and it was too short!! He also said his girlfriends were not going to like his hair-- not sure where that came from!! After explaining to him that his hair was falling out because of a medicine called chemo he was a little better but not much--- He talked Jeff into going to get him a new hat since he could not go--- and they talked to each other while Jeff was at LIDS and Grier decided on an Alabama hat--- :) Grier has no real favorites--- he just tries ALL teams--! There was a lot of drama last night night but he seems to be better this morning-- The hard part will be as his re-enters each new place sporting his new "do"!!! He is very aware of reactions so please be careful--- I know kids will not know what to say but I can only hope for the best! We have to continue with his shots this week and go to the clinic once maybe twice to check counts-- He is scheduled to start round 2 on Monday but his counts have to be good enough to do so-- He is on periactin ( it helps his appetite) and finished the second dose of tamiflu today-- I am going to update soon about the Go Grier Go team that will be walking at the 2nd Annual Curesearch Milestones Walk on Saturday, Nov.7th @ 9:00am-- it is growing daily and I hope we have a super turn out like we did last year-- I hope if you joined the team last year you will come again--- also I would love to see everyone ask 10 people to sponsor you for $10 each if you are on the team-- It is really hard to get corporate sponsors this year so it will be up to walkers ( including spirit walkers) to raise some money for a cure- I am the team captain but I am looking for someone to take this from me-- I also would like to do a team T-shirt but I can not be in charge--- if that is something you are interested in.. please email me- amychristenbury@att.net-- I would love to do a race like T with business sponsors on the back so if you know how to do this please email me too!! More on that later--- the bus just came and I am switching hats!!! Amy

GoGrierGo team link---

click on join team--

96 cents of every $1 goes towards finding a cure for pediatric cancer-- even the $10 walker fee--

http://host.curesearch.org/site/TR/Walk/Milestones/80174482?pg=team&fr_id=1300&team_id=5710

Friday, October 2, 2009

Grier is getting platelets and blood right now--- I guess it is a good thing we are in patient at LCH--- because it was bound to happen and because the whole process takes 6-7 hours it is easier to be in a room-

He is in pretty good spirits-- only once last night did he have a fever of 100.7-- and he slept fairly well-- except for being touched every hour-

We are going to start him an appetite stimulant today-- he is down to 35lbs-- from 40-- :( I can not wait to see how it helps-

This weekend we are going to try something new-- Grace is playing soccer in Charleston and we had planned to all go as a family--- but relapse happened.... and we have not done anything we have planned in awhile--- BUT we are going to try to have fun with Hayes and Grace this weekend as Grier has fun at CAMP LCH with Maggie- It will be a little different but since he is not getting chemo and really just sitting there waiting for his counts to go up it will be a good weekend to spend with the other two -- And the new rule at LCH-- no one under 18 allowed did help with the decision to go--
Wish us luck as we go play soccer and Grier has Camp at the Hospital--

Thursday, October 1, 2009

Uggh- I am not sure where the stamina I had 2 years ago is now!!! I am tired ... I know Grier is over this and the rest of my house--- Going to doctors appointments has become the plan of the day-- and Grier and I are done with it all! I have barely had a conversation with Jeff in weeks--- seems texting is the new way to talk-- he is going one way and I am trying to manage what I used to do plus adding the medical director title-- We went to the clinic yesterday and counts were holding their own-- Grier even announced that he did not need blood when we got home-- clearly... not a normal response to how was your day!! He played wii--- and then the BIG "D" hit again last night--- he woke up this morning and felt warm so we were on fever watch all day--- around 3pm he spike to the magic point the call had to be made to the clinic--- And they said to come on over so he could be admitted--
This is where is gets a little comical--- The clinic parking is not close to LCH--- go figure since I can place a bet they have the most admissions on a daily basis-- but that does not matter-- I chose to park where I know we will end up and that is LCH--- so it is a longer walk at first but when I am trying to go home quickly it is shorter--- I have Grier... in his "man cave" aka the stroller... and our bag--- we do what we always do walk into CMC to go over the crosswalk to get to the clinic---- oops--- not today.... we were accosted by the under 18 police and told by her we could not go into the hospital--- I tried to explain and tell them he had a fever-- we are on our way to the oncology clinic but NO was the answer! I really do not have the energy to fight assclowns so I just thought we would walk through LCH-- And they told me we could not walk to the clinic because he is under 18--- NOW....again... I said he has a fever trying to get to the clinic to be admitted--- and she said you are going to have to walk up the hill outside---- because he is not a patient yet... uhhh... I said maybe not at the minute but we are frequent flyers-- and she pointed to the outside--- I swear.. people are going nuts about the flu-- forget about the kids who have cancer!
We made it to clinic--- and I do not care about the hike up the hill while I am carrying all kinds of stuff-- because I have done worse in NYC--- The under 18 rule is not that bad but it is hard on families-- Grace and Hayes can not come up and Jeff and I will have to switch in the lobby or just not bring them at all---
I am going to sleep before they come in for the 100th time tonight-- It is the most bizarre thing... rest is not something you get here!

Monday, September 28, 2009

Things are changing a little!!! Grier perked up a little on Saturday night at Grace's family dinner--- he ate a "little" bit and drank a creme soda--- his favorite!! On Sunday, he had even more energy and did not nap--- He spilled the beans about the present he got Grace... but as Grace says... he gave it to me so he could play it--- maybe so but there was a wii marathon in my house on Sunday--- Grier gave Grace wii resort for her birthday and they have loved playing it!! Sunday was a great day for the festival too--- but Grier did not make it to the park-- just asked for a balloon each time we went over there--- :) We are still managing some side effects-- I will spare the details. We are now playing musical beds--- Grier and Hayes share a room and when he is sick we just put him in our room--- he used to sleep in the toddler bed but he is a little big for that now and as he says it is not so comfy!! Plus the crying wakes Hayes so we are trying to balance out who needs the most sleep--- and at the moment the "tween" is the winner! It is almost a no win situation because as soon as we get him back to his room we will be fighting the same side effects again--- So... Jeff and Hayes are roomies at the moment-- Grier had a clinic appointment today-- and after the initial tantrum about not wanting to go to the doctor anymore and screaming about going to the doctor for 20 days straight we made it-- he actually fell asleep from here to CMC--- and most know it is less than 3 miles!!! We decided to do a finger prick instead of accessing the port to check his counts and that went OK---I told him afterwards that his scream could have broken the glass it was so high -- and he smiled-- We left after a quick check up -- they called to tell us his counts and he is nutrapenic ( no immune system) but his blood and platelets are holding steady and he did not need a transfusion yet--- we have to go back to the clinic on Wednesday Morning to check again because it will happen soon- We also start the dreaded G-shots on Wednesday too--- can't wait to tell him that one!!! uggh---I hope I have not lost my touch--- hmmm not sure who I am kidding I was not very good at giving shots. Still praying for no fever-- he is doing better but he has lost 3 lbs--- does not seem like a lot but when you are only 40lbs -- it is !

more pictures on GoGrierGo.com-- they were taken today --- He went out side to practice soccer with Grace but came back in quickly--- he is just not up to that yet- And one picture of him playing the wii--- I should have taken a picture of him doing his "homework"--- it was pretty funny.... I will try to get a picture of that soon-

Saturday, September 26, 2009

Cycle 1 -- DONE..... now on FEVER watch!

Oh my gosh-- I think the last three pictures I have take of Grier look the same-- but trust me they were taken on different days! That may give the biggest clue about how things are going around here- Friday we went to the clinic and it was very hard to calm him down and promise that we were not going to spend the night again-- I totally understand since when we went on Monday we were admitted from clinic-- but he was not buying it!! We saw the doctor and guess who did NOT have the flu--- ( seasonal or H1N1)--- GRIER!!! I felt a little like saying I told ya so--- but our doctor said it for me-- he did not think he did either- We did find out that his blood counts are falling quickly from the chemo-- so knowing that made me a little nervous-- because if he gets a fever it will be an automatic admission until his immune system recovers enough to leave and that my friends has no time line-- :( He received the last hour of irinotecan in the infusion room--- he told me he remembered that room-- he might...but who knows-- it is a nice open room with tons of windows and lots of things to do while he is getting chemo or blood transfusions- He played with a remote control car and drove it around trying to avoid tripping the nurses and played NASCAR 2002 on the PlayStation they had--- he was cracking me up as he tried to pick his driver and he was not understanding that this game was a 2002 version and we are in 2009 and some things have changed! After the beep he was de-accessed .. meaning the large needle was taken out of his chest so we could go home-- Not his favorite thing to do at all! We walked to Chick-fila and I ordered whatever he wanted in hopes that he would eat something--- It has been since Monday with not much going into his mouth-- and I will say he took a bite of a chicken nugget when we got home and the milkshake and soup were not even tried!! At this point he is calling the shots -- I just want him to eat so today we are trying a smoothie from Smoothie King and some muscle milk- ( we gave him muscle milk back in 2007 and I am trying to tell him it used to be his favorite and it gives you muscles like ball players--) He is asleep again so I will let you know how that goes! We did make it around the lake for the Festival in the Park-- and he has had a few surprises lately-- Yesterday he woke up and a mom from his class had dropped some cookies off and a note-- he grinned when I read the note and was so concerned that his friend was here while he was sleeping playing and he did not even know it! So as of right now we are on "fever watch"-- I should have a bag and ready to go just in case but have not barely unpacked the other bag! We are being more careful than we have been about hand washing and germs--- I know Hayes and Grace will be exposed to tons at school but we are doing our best to be safe at home- and WASH HANDS--- but 80% of the time you just get a fever because you have no immune system--- I am really hoping we fall into the 20% and skip that admission this time- The good news is that round one of chemo is behind us-- now we manage the awful side effects-- as soon as his body recovers we will start round two- He is having a hard time dealing with wearing a pull-up again-- but we keep telling him it is just in case of emergencies!! I think he is having some tingling on his head because it is very itchy--- I remember this the first time... and it was before his hair started to fall out--- that will be the next "big thing" Thanks for checking in-- we are surviving--- Grace turns 10 this week so we are celebrating that as well-- Amy ps-- Whomever sent me the flowers at home---- THANK YOU!!! It was quite a surprise--

Thursday, September 24, 2009

ONE EXTRA "SLEEP"

This picture is Grier and what he did when he got home!! As you can see the couch has been turned into his area!

After another night of hourly urine collection, I was just happy that it was morning and we survived without many issues.... but around 6am the side effects started and Grier and I were battling getting to the bathroom fast enough while pushing the pole along with us- At one point I was running for the bucket while I left him in the bathroom and then the pump decided to quit and have the loudest alarm-- after all that early excitement we got back to bed.
I was determined to find something he would eat for breakfast but failed at that-- he did have some sips of Sprite-- we coasted thru the morning still fighting a fever on and off for no reason they could think of--- but the best news was we could still go home-- So, I knew we could make it to 10pm knowing that--- I left for a little bit and went to get prescriptions that we were going to need when Grier came home-- we had nothing-- ! And then I met Grace and Hayes after school and went to soccer--- really so I could just be outside for a little bit-- Jeff went to the hospital to switch with my mom -- I was coming back after soccer so we could switch again--
BUT the text came in while Grace and I were eating dinner--- FEVER.. 103! I took a deep breath and asked Grace if she was ready and we headed over to LCH-- And what we walked into was not even fit for a MOVIE-- way too much for one family to deal with-- but given that we did not have a choice-- it was handled as best as we could- I can not go into all of it but we had quite a night-
Long story short-- the on-call pediatrician decided he may have the flu-- so they wanted to test him and start him on Tamiflu-- really???? I will eat my words if it comes back positive but I don't think will-- But after she started that process we had to be isolated!! Everyone that came in our room had to wear masks .... Grier fell asleep and I decided I need to talk to someone on the phone-- so I text-ed Anne to call me on the hospital phone since my cell had no service-- We talked for a little bit and I had to go so I told her to call back-- well the hospital cuts phones off at 10--- so I was so mad--- called the operator and told her to let the call come in to our room and she passed the buck to the nurse supervisor-- now I was really mad.... I know why they do it-- patients need their rest... and some people do not have common sense-- but after I explained to them that for two nights they did not care one bit about rest for Grier since they started chemo at 10:45pm-- and I need to talk to someone-
I would like to say I got to finish my call but that is not the case--- !
We woke up this morning and after talking to the doctor he said we could go home by noon-- and we were home at 12:15pm--- He did the chemo at 11:00-- and had his dose of Tamiflu-- still has a random fever --- but they decided to send us home-- We have to go to the clinic in the morning for the last dose of this cycle-- then we wait for his counts to drop... and fever!
I decided after this week if people actually knew the "real life" of pediatric oncology and the havoc it does to a family then there would not be one person not pushing for a cure-
Amy

Tuesday, September 22, 2009

WE can call this entry take "TWO" since you have to hold your breath and stand a certain way and do something else special ( which I have not figured out yet) to not get kicked off the wi-fi at Levine!!!! My cell does not work either so it is really driving me crazy- Last night was not at all what I had hoped for our first time back--- I asked several times about the timing before we made the Monday appointment to start chemo and was assured that the orders were written and everything would be ready after our brief clinic visit--- Well.... experience had me doubt that but I had no idea we would have been so off--- Basically, we waited around all day.... lab lost one urine collection and then they were not at the magic number so it required lots of fluids and by 10:45 we were ready to start the chemo--- one of which was the 6 hour infusion that requires me to wake Grier every hour for 8 hours so they can make sure there is no blood--- I get the why!!! But the timing in my opinion is unacceptable for a child-- He fell asleep around 10:45pm-- almost as soon as the gave him the anti-nausea meds--- but woke up screaming and shaking around 11:15pm from a bad dream--- after that he was awake so I only had to wake him once around 2 am--- he was wide awake and was not that comfortable--- LOTS of fluids and feeling sick! Around 5:30am we could stop the required urine collection but he still woke up because of the amount of fluids he was getting--- but this time he would wake and go back to sleep--- He has slept all day! Tonight we MUST follow the same time line because making it earlier would not give the bladder and kidneys enough time to recover-- so I think he will be up anyway and I have had a nap so we are ready for the night shift! This has been this hardest way to start chemo because I am trying to be there for Hayes and Grace because I am not out of town but at the same time--- I am not nocturnal-- and I had to sleep today ! I have gotten all kinds of excuses of why.... but the fact is they should not do that to kids! PERIOD! After I left this afternoon I found out that Grier has a fever of 101--- so I am not sure how that will change our plans of discharge tomorrow--- I do know we will not be done until 10pm--- and I have already told them we are leaving no matter what time-- :) Grier is very quiet and does not feel good-- so I am hoping he perks up a bit by tomorrow before we come home--- OK-- off to the baseball game -- and then back to Levine's for the night! Amy

Monday, September 21, 2009

Grier is starting the first of 2 cycles of high-dose cyclophosphamide-irinotecan-vincristine today ( we have been there since 10am so we are still waiting for pharmacy!)
--- I am a little nervous about the irinotecan because it causes a lot of diarrhea- and when we did chemo 2 years ago he was not potty trained so we will see how it goes- The plan is to stay 2 nights and leave after the infusion is done on Wednesday-- then go to the clinic on Thursday and Friday for the rest each day-- We can not do the cyclo out patient because it fries your bladder so you have to make sure you are peeing enough -- this is why I do not want to start this late because he will be up all night--- I guess that is a lost cause now- the infusion is 6 hours!

Grier made the transition back to Levine better than I expected-- He wanted to go to school and I told him we could not go today and he said what about tomorrow??? And then I broke the news that we had to go to the hospital to get some medicine that will get rid of all the bad cells that we can not see-- And then the tears came.... not really because I said we were going to have a sleepover there but because he knows the medicine comes out a tube and he knew his "button" aka mediport would have to accessed with a gigantic gauge needle and he HATES that-- So I had the sales job on-- we were going to play wii--- watch movies... do art.... and I would even get him a goldfish when we got home!! ( The goldfish was from this weekend when Grace asked if she scored 2 goals in soccer would I get her a goldfish--- I told her sure ... :) I was pretty sure that was a safe sure since she is a defender!!) So, Grier got on the goldfish bandwagon!! I guess it could be worse--- a puppy??? Ha!Ha!

After the port was accessed he had to get a flu shot--- so it was a tough morning and we had not even been to the hospital yet---

That is it right now-- try to update tonight--- right now I need to help with homework-- ( Grace not Grier :)

Pray for no side effects--- vomiting and such!!

ps-- I did teach Grier a new phrase today---- with the advise of another warrior... Liam's mom--- Today when he was so upset about all of it I told him he had a right to be mad and he could scream "THIS SUCKS" when he felt mad about going to the hospital and the doctor all the time-- so as we pulled into the parking deck--- I told him to give it a try--- and he squeaked out a THIS SUCKS--- and I told him he had to be louder than that!!! He just smiled and I told him I was OK with him saying that !!! Sorry if you don't agree but it really does suck that kids go through this-!

pictures are from this weekend--- scootering a week after surgery and sporting his new soccer uniform!!! ( Thanks Thomas for bringing it to him)

Friday, September 18, 2009

We landed in Charlotte around 5:30 on Tuesday and it was so nice to see Hayes, Grace, and my mom waiting for us at the hanger--- Grier did really well on the flight and even got to lay down on the couch -- it seemed to help because most of his pain was from sitting straight up-- so we were really thankful we got a flight with Corporate Angels- I kind of think there needs to be a holding area where you can go and decompress before you switch hats from medical director & cancer parent to HOME--- it is a hard transition when you are fighting exhaustion and you know your other kids want things to be normal-- but I guess that would be in a perfect world-- since that is not the case we jumped right back into to homework, signing papers, sports, fundraisers, work, open house at schools, grocery store etc.-- meanwhile caring for Grier who had major surgery a weeks ago- Sleep was not happening at first for Grier.... a little because he still was uncomfortable a bit and he is so "off" that he was up from 2-5am for a few nights--- Now on to the hard part----- I have "written" this update a thousand times in my head--- I was going to tell you how I hate the "c" word--- especially when I hear that invaded a child-- I also now hate the word "goodluck"-- I know some of you are wondering why--- but anytime you go a medical facility they always say "goodluck" as you leave--- certainly I do not consider it to be "luck" to have the "c" word labeling my 5 year--- I know it is not meant like that but just hearing it over and over for the last few years is enough!!!! As we waited for pathology to come back I thought it would be some "luck" to have it say something different than what Dr. Laquaglia thought the something was--- now that would have been goodluck!! On Wednesday, when we met with the surgeon he said he thought the spot was neuroblastoma-- but we would have to wait-- we chose Dr. L because he is a gifted surgeon who specializes in NB so hearing that was a kick in the gut for sure! So... my new word that I happen to hate today is the "R" word--- if you are totally lost at this point I am talking about the word RELAPSE! Pathology came back and it is confirmed that the effing spot that was so small was an early NB tumor- We are waiting on the two offices to speak and get the plan of attack going--- Grier will do 2 rounds of high dose chemo--- we are familiar with this poison and know what it will do to him--- he had 7 rounds last time in 2007--- so I am hoping 2 will be a breeze!! ( I hope someone can time I am being sarcastic!!!) We have been told to expect the normal side effects and fever from being nutrepenic ( no immune system) and lots of blood products-- CHEMO is NO CAKE walk-- As I had many breakdowns in NY I was reminded that relapse is not the same today as it was 10-15 years ago-- I was also reminded that he gets scans every 90 days for this reason.... to find something early...! I guess the part that angers me the most is he looked and acted like any other 5 year old meanwhile NB was starting to invade him again-- no warning, no symptoms, silent and sneaky just the way it started over 2 years ago- And the fear you feel every day came true-- because what they do know about NB is it comes back most of the time- Our plan is to have chemo done in Charlotte.... having Hayes and Grace around even if it is in the hospital and being able to come home for brief times out weighs the benefits of getting chemo at the day hospital and then going back to the Ronald at night- And I have asked a 1000 times... chemo is chemo, right??? NY does not a a special version that Charlotte does not provide-- the main difference is that you have to check in and spend the night at the hospital for the entire round -- Being here will also allow of a little bit of normal... one of us will be with Grier and one will stay at home and take care of all that entails--- it will also allow Jeff to continue to work-- which is a priority.... seems silly but that is how it works! I wish he could "work" when we are in NY but he does not have that kind of job-- Grier will have good days that he will feel good and he will have those bad days too-- on the good days I am going to let him go to school--- and we will lay low on the bad days-- hopefully he will have more good days!! After chemo is complete will will rescan and see where we are in the fight- If you see us out and about please do not ask about it in front of Grier and Hayes and Grace--- I know no one will be saying "goodluck" to us--- after reading this--- but I am a fan of the thumbs-up sign--- !!! As we find out the schedule I hope we can get back into the groove that we were in --- not sure how we did it then but I know it can be done and we can get Grier back to NED soon-- More to come as I know more details and as I process the new information-- we thank you in advance for the prayers, thoughts, and messages--- Thumbs Up- Amy ps-- We have had offers of help already and I have not even thought about it yet--- but I will think of things and it will be posted on the blog--

Tuesday, September 15, 2009

Preparing to come home!

We are coming home today--- thankfully a corporate angel flight came available yesterday while Grier was in surgery--- by the time he was in recovery we could tell him we were flying home to Charlotte tomorrow!! I do not think he was overly excited because yesterday's events sent him over the top with anxiety and pain--- more on that later! We leave the Ronald today at 1-- drive to Teeterboro and fly into Charlotte! Should be home by 5pm- I will update soon with lots of details of what has gone on the last couple of days-- I just need to figue out what to say :) We are very thankful for this company participating with corporate angels--- it not only saves us time and money ( airline tickets less than 24 hours notice are quite expensive!!--- and they do not seem to care why we are booking so late-) but it will be more comfortable for Grier since he is still recovering from another "crack in his side"-- I can not name the company but it is one our banks!!! ps -- This picture is Grier showing off his body--- he may have to be Frankenstein for Halloween instead of Jeff Gordon-- :) I saw some PJ's at target that said Chicks dig scars..... hmmmm??? They are really going to dig G!

Sunday, September 13, 2009

Not much to say about today and last night--- Grier did OK-- he has times when you know he is in a lot of pain and you just hope it is time for pain meds-- He is doing OK drinking and eating....
We did not get moving early this morning.... Grier was up until midnight--- and I am not sure how much I slept--- Jeff was sleeping :) I can tell you that---:)
We got out and walked around a little this afternoon and stumbled into a street festival--- it was OK--- just nice not to deal with the traffic~
Tomorrow we have to be at the hospital at 8am-- not looking forward to it but it was of those things that must be done- Hopefully we will be able to head home on Tuesday.... really hoping corporate angels still has the flight they told us about on Friday-- we will see!
No pictures today--- it was just a day--- I was going to say normal day but it was no where near NORMAL-

I can not believe we have been here for a week-- I am ready to go home and try to get our family of 5 back into some sort of routine- The Ronald was "decorating" the lobby tonight and I could not even look--- it was a "back to school" theme-- that is what we should be doing now at home in "Carolina"-- not dosing out narcotics--- !! I hope he has forgotten about the countdown for soccer because right now I would have to wrap him in bubble wrap to let him play-- and I have not even asked the surgeon what he thinks probably because I have a pretty good idea of his answer~

ps-- Jeff was pointing out the typos this morning --- Let me just say I am tired and exhausted--- I do know the difference between a couch and a coach--- and whatever else I got wrong-- I don't spend too much time proofing ---- just trying to keep everyone updated on Grier so spelling errors and grammar does not really matter right now :)--

picture is from lunch--- he fell asleep before it came :(

Saturday, September 12, 2009

Things changed quickly-- in our favor this time!

I have often wondered in the past month how something can change from good to bad so quickly--- and today I got to see something change from bad to good very quickly--- It was just what the three of us needed after yesterdays horrible events- I got to the hospital around 8:30am to find Grier looking not so happy-- he was just staring at the TV waiting for breakfast to come- Jeff said he had a good night and was awake for most of it-- I think he has been sleeping so much in the day that he sleep schedule is a bit off! We got him to eat a few bites of breakfast and drink a little---All the doctors started doing rounds so it was one group after another and the word was we might be able to leave the hospital today-- We got him up and walking to make sure he was not in too much pain since we they switched him off of IV fentanyl to oxycontin-- He did great and kept walking laps around the hospital floor-- Our nurse came by and said we could go as soon as we were ready - he immediately started chatting and told me what he wanted to wear and was ready to GO!As we were walkig out we saw Dr. LaQuaglia at the door and he gave Grier a high five and said he would see us Monday and then we could go to "Carolina"--- then he started signing the James Taylor song- :) We walked back to the Ronald and settled in-- I had to go back out and get his Oxycontin filled and get lunch-- when I got back Grier was sitting at the desk coloring and it was great to see-- He was moving all around the room and even squatting to pick up matchbox cars-- I was in awe and all of the last few days seemed a little surreal after watching him--- He ate lunch and you could tell he was hurting again. He wanted to rest so we got him propped on the coach with a ton of pillows and he fell asleep for several hours-- When he woke up he was not feeling great.. he was wincing as he moved and I knew he was hurting-- it was time for his pain meds so as soon as that licked in we decided to get out of the room--- he needed to walk a little--we went to blockbuster and got a movie and then went by Lenny's for a turkey sandwich to go-- :) That sick feeling came over me as I watched him in pain again-- I really wonder how much pain since I know his pain tolerance is very high-- and he probably does not remember what it is like to not hurt. He ate a little dinner--- got his PJ's on and started watching his movie-- he is multi-tasking a bit -- he is also watching Nascar and Football-- He seems to be more comfortable now-- Tomorrow we will be doing nothing--- we may go to an art place down the street and pain but we will just play it by ear-- I know we have to do laundry-- and after waiting all day for a washer to come open-- which never happened! I am going to drop it across the street tomorrow and the fluff and fold!!!!!! I have put some pictures on gogriergo.com -- they really show the progression of his mood today- Hopefully tonight will be good and we can all rest-- ps-- I forgot to tell you what happened when I was walking back from the hospital in the rain--- it was really windy and I was going back to shower -- I was about 2 blocks away and a huge gust of wind came and my Life is Good hat went flying into the street and traffic--it was all the way across the street and I said..... ( you can guess) -- I was not going to get the hat-- it was being run over by cabs and really Life was not so good at that moment--- so I just kept walking-- faster--- because I had a hat on for a reason!!! And all of a sudden this lady taps me on the shoulder and hands me the hat!!! See NYers are nice!!

Friday, September 11, 2009

Let me see if I can remember the last two days--- they have been very busy and I am going to try to be as positive as I can..... There was a bed crunch so they need to move Grier from the POU ( pediatric observation unit) ASAP--- i felt we were getting rushed out but they kept telling me he was doing well--- Well????? He did just have a major surgery-- not his tonsils out.... but a THORACOTOMY--- As soon as the shift change happened on Thursday morning it was very apparent we were headed to the inpatient floor--- as some of you know I dread that floor--- shared rooms and less supervision is not mu idea of resting and healing--- I pleaded with everyone that came in but basically they needed a room- Around 10-- guest services came to take Grier down to x-ray.... not on his bed but in a wheel chair-- or basically on my lap in a wheel chair--- the only problem was he had not been out of bed yet and that was his first time--- :( He was in some pain but we kept pushing his pain pump as it would allow ! We got to xray on the 2nd floor and he had to walk a bit... ( first time again) to sit on a stool so he could have an xray--- He still had his chest tube in and his catheter and this was making moving around very difficult-- but he did what they asked and we went back upstairs--- then we were met by PT--- so he got off my lap and walked... or shuffled into the room-- he did have a gown on but his backside was showing because he still had a catheter and we were not able to put pants on yet! Then they did some "games"/ exercises before he could get back on the bed--- his hands were very swollen from the IVs that were put in for the surgery- they wanted him to write his name and he did but I still do not know how--- he cried the whole time and after seeing his hand today I can understand why- The whole time PT was working on him his nurse was tweeking his IVs that were causing problems and his catheter that was not working-- there was too much going on fr his first time out of bed-- He finally got to rest some and had a few sips of Gatorade-- And soon after they were moving us to the floor-- We packed our stuff ( not much) and carefully picked him up with all his "things" hanging from him and put him in the stroller and wheeled over across the hall--- I was about done at that point and I am sure they could tell--- After all we were working on not much sleep and a lot of stress-- We walked into our room and it was a "corner room' just like the tiny room that I have terrible memories of from Oct. 2007-- so as you could imagine I was holding back tears and really wanted to wheel him out of the hospital and run-- but we settled in and just sucked it up as we always do- Jeff went back to the Ronald and I stayed--- Grier woke up a lot-- it was almost as if he was a newborn again-- his oxygen level would dip low when he was sleeping and that still had to be monitored like the night before-- but this time it was me doing it-- He had pain about every hour so we would press his "button" and he had night terrors again-- this was probably the worst....His IVs did not work during the night-- as well as the stpid catheter that was not working well as we left the POU-- not sure what time they worked on that-- Grier was over it-- Jeff came back in the early morning and we knew the goal was to get rid of the catheter and chest tube b/c it would make it easier for him to get up and move-- which is good for his lungs and to prevent complications.Both were out by 11 and then the IVs were not working--so that was being worked on by tons of people-- he had been screaming since the cath was taken out and the awful chest tube-- if you do not know what that is google it-- He had calmed down a bit and we were having him blow bubbles and we talked him into trying to use the bed urinal to pee so we could get him up and moving--- it hurts when a cath comes out because you are irritated and when he went it burned--- he then was shaking all over and I called the nurse--- then we called the nurse practioner because he was shaking uncontrollably-- well, they needed blood to run tests and those IVs were not working so after several people attempting to draw blood and missing they finally called someone from the day hospital-- and she was able to fix the IVs-- Grier was so upset that anytime anyone came in he started crying--- He then spiked a fever and it went away quickly.... and we let him rest! PT kept coming by but after 2 hours of hell we told them to let him rest.... later the blood they took did not do so they needed more and the whole IV saga started again--- but after the first try.... we said.. stop! Please call the girl who came from the IV room--- and they did - Grier ended up losing all 3 IVs and they started a new one today but Connie fixed the problem-- He ate a little lunch.. grilled cheese and a smoothie ---Things looked a bit better than the early morning. We got him some new pain medicine-- Dillaudid--and got him up and walking and it was like a different child. He walked and stood up and did games like kicking and throwing for over an hour-- Hopefully we can get him out tomorrow if things stay the same as they have this afternoon -- no fevers are a must and he has to be mobile and not need oxygen while he sleeps-- Jeff stayed tonight so I could sleep some-- I hope when I go back in the morning I will hear he had a great night and is ready to get out of M9- That is it--- I have left out tons of things -- too tired to type them all-- Hopefully we will be home on Tuesday or Wednesday--- we need to do one more procedure before we can leave NY-

Wednesday, September 9, 2009

I just wanted to do a brief update about today's events-- it will be brief.... because I can barely see the screen and I can't type without hunting for each letter! We got to the hospital at 6am--- we left the Ronald at 5:45am and walk in the dark the 5 blocks -- it was dark outside and pretty quiet on the street-- We waited-- imagine that??? And finally started the pre-op process--- We had to talk Grier into putting on the gowns but he eventually complied if he could play with Dad's phone-- ragdoll blaster has been quite a bargaining chip lately! He did great as expected-- Dr. L came in to ask if we any other questions and he had to sign Grier's side where he was going to make the incision for the thoracotomy-- he did in purple pen and Grier giggled because it tickled--The anesthesiologists were really nice-- they let Grier push the propofol and carried him to the OR with the promise that they would take good care of him- That was about 7:45am- We went to the lobby/waiting room and waited for our beeper to go off-- and it did around 9:45-- we then moved tp the 6th floor to wait to talk to Dr. L-- he was getting ready to close Grier up- At almost noon we were taken back to PACU-- and then finaly moved to the POU ( Pediatric Observation Unit) The POU is a step down version of PICU- He is there right now--- resting comfortably-- he has talked a few times-- He has a chest tube, catheter, and lots of leads and IVs-- He woke up around 3 and said real loud-- MOM... I have a question?? It surprised me a little because he had been just nodding for a while-- and I said-- OK... what is it? And he said--- Am I naked under these blankets... ? We laughed and said-- Yes.. And then he wanted to know about the catheter-! He does have a pain pump that he can push--- but he has not used it yet-- Occupational Therapy has come in to see where he was physically before today--- and that was easy..... he is an ACTIVE ATHLETIC 5 year old- They are going to come back tonight or tomorrow to get him up and moving- The news from Dr. L was he got what he saw and looked all around for more--- we will not know exactly what it is until Pathology comes back but there is an idea- Hopefully tomorrow will be better and we will be even closer to answering Grier's question... Am I done yet? I know he wants to go home-- I thought Skype would help by seeing everyone but that really makes him asks CAN WE JUST GO HOME?--- And to be honest I am ready to go home too--- !

Tuesday, September 8, 2009

After a few hours of waiting for our 11o'clock appointment we finally saw the surgeon and his team--- signed all the consents and learned about the surgery--- It is call a thoracotomy-- ( I am sure I spelled that wrong)-- In some ways the consult was easier than the last time... I had no idea what to expect and hearing about all the risks that could happen was shocking--- I can still hear some of the original conversation to this day-- Dr. LaQuaglia has a nice soft voice and it seemed more calming today but the same info was shared-- It is surgery-- The biggest difference for me is that last time I knew Neuroblastoma was lighting up in his body and wanted it OUT asap-- this time we are putting a "healthy, active 5 year old in surgery to see what the "bleep" the something is- And to top it all off-- everyone of the doctors and nurses thought we were in NYC for scans-- because Grier looks so good--- Have you started school yet?? I then had to say... no we are back-- we were here 4 weeks ago and then the tone changed a bit-- because they know --- I guess everyone of the doctors is an exaggeration because there were a few whom I had emailed and talked to on a regular basis the last few weeks--
Here is how tomorrow will work.. we have to be at the hospital at 6am -- Grier is the first case of the day and will start at 7am-- I do NOT know how long-- but depending on the length and how many blood products they needed will decide if he goes to PICU across the street-- or he could go to the POU at Sloan if he is not on a ventilator- The incision will be mid back area-- not as large as the one he has on the other side-- he will get a temporary line under his collar bone so he does not have to be stuck all the time- Dr. LaQuaglia is going to do a frozen slide of the something -- pathology takes 7-10 days!! Hopefully with no complications he will be ready for the Ronald in 4-5 days-
We are a little numb and Grier is just being Grier--- he is so good at letting people look at his body and press and prod everywhere-- The only issue was the IV again but after it is in he is fine-

We came back to the Ronald to get ready to go to the Natural Museum of History when we noticed some Yankee tickets on the board--- So.... instead of sitting here in the box we are going to cheer the Yankees on-- I know... crazy but really we are just going to do it--- It is not like we were going to go to bed early tonight-

I will update when I can tomorrow--- I may have someone else do it-- not sure about Internet connections and timing--

I am still hopeful that this is nothing-- and very content with the fact he is in the best hands possible tomorrow- We would appreciate all good thoughts and prayers especially tomorrow and while we are inpatient--
Amy

ps-- Grier is dressed for the Yankees game---- I will post pictures tomorrow???

Pictures-- Grier on the Subway

Grier at Yankee Stadium

Grier posing at Dunkin Doughnuts

Grier showing me "tiny cups" at the Yankee Store--

Grier eating popcorn while yelling ""yets" go yankees..."

Monday, September 7, 2009

We had a very busy Labor Day--- we started off with breakfast at Cafe Luka ( those people are so nice!!) and walked straight to Central Park so we could sail a boat on the lake--- We got there and the boat rental guy was not there... and I was hoping he would show up because that would have been three times trying to do this! We ended up walking around... climbing on the Alice and Wonderland statue, climbing rocks, watching turtles at the turtle pond, and eventually winding our way back to the boat rental area-- with a little help from google maps on our phone!!! When we arrived back the guy was there and we put our name on the waiting list--- waited for a little while and then enjoyed all 30 minutes of sailing a boat--- Grier figured out quickly how you need wind and which way to move the sail-- he had fun and we had fun just watching- After we finished Grier came up with something he needed-- he always does and actually make the trip fun trying to find the item--- He wanted a pillow that has those "bean bag beads" in it--- so we were trying to decided where to go--- and the funny thing was he knew exactly where to go--- we just forgot the name of the place- ! We ended up eating lunch on the way and found the store he wanted to go in--- but the "pillow"was not just right--- seriously he is quite a shopper and it makes me laugh-- he immediately spotted a new pair of what I like to call "coach John" pants aka track pants-- and all requests for a pillow were gone! I won't go into the detail of the shopping but he did get the pants--- it will be nice to have another pair especially since the weather is a little cooler than expected.....I know some of you are laughing becasue you know what a sales job he was doing-- and really today he did not need to! We ended our day and Grier seemed to have a really fun day-- I just asked him what his favorite thing was that we did or saw and he told me buying the pants!!!! I said BESIDES shopping and he said sailing the boat was his favorite along with his new pants!! Tomorrow will be quite different-- I know to expect it to be long because tomorrow will be like a "Monday" at the clinic-- and MONDAYS are LONG! I also know what a consult is like with Dr. LaQuaglia --- my unknown for tomorrow is all Grier's observations and questions--- so we will see how that goes. As much as I would like tomorrow to answer the questions -- it will not-- it is basically a formality-- Thanks for all the thoughts, prayers, rides, and messages here and on FB--- they do make being away a little easier....

Fielding's guestbook entry made me think of something--- Grier was sailing his boat next to a seven year old who has his own "sailboat" -- it stays in the boathouse-- needless to say... he was great and actually told Grier he was doing really well for the first time with a "rental"-- that was his words not mine! Anyway, his cool blue bottom boat with two sails and Grier's #65 almost crashed a few times-- and the other little boy would say.. sorry my fault... but I would see Grier's smile and knew his "NASCAR" mind was loving the near misses with his #65! ( NOT to be confused with his carpool number !!! :) The little boy in front of us got 85!
There are a lot of pictures on gogriergo.com-- caringbridge does not let you include as many--- none of the cool blue boat.. it was going to fast for the camera phone!!

ps-- Please do not get a pillow--- :) I am going to try to find one for him-- I need it to fit in the stroller so he can lean on it- And if you see my mom tomorrow wish her a Happy 60th Birthday!! We are going to celebrate when we get home--- :)

Sunday, September 6, 2009

Have you ever gotten somewhere and wondered how did it happen? I am not even talking about the last 2 years.... I am really talking about getting to NYC today!!! Somehow all the packing, list making, grocery shopping, organizing got done and all of a sudden we are back in a familiar place-- the Ronald!!! Ugggh! It was 4 weeks ago we left the Ronald knowing about the "something" and here we are again-- We flew JetBlue and had a nice flight--- it would have be a lot nicer if I can figure out how to fly w/o ear pain!!! But with the TV's and not having to schlep our carry- on around ...we had a NICE flight into JFK-- took a cab to the RMDH... and arrived around 8:15? There was a little confusion at the check in desk -- they thought we were coming tomorrow-- which we were until we could not get a flight so we came a day early... they tried to say they did not know but after I told them what day the email were sent they found it--- imagine that! We have a nice room similar to the first time we stayed here-- so that is a plus! We have done some rearranging and pushed the two twins together so they sleep 3!! The biggest question of the day is when are we checking out or when are we going home... ( that is from Grier) and I have to say I do not know! Not an answer I like --- but it is the truth- I heard Grier tucking in his animals telling them they were on a trip and we were going home... (pause) Grier: MOM... when are we going home, like how many days are WE staying here ? Mom: I do not know .... we will see what the doctors say... Grier: ( silence) The most excitement of the day was figuring out how to use Skype-- As you can see from the picture-- we can video chat with Hayes, Grace and Maggie-- Tomorrow the PDH is closed so we do not have to go anywhere near that place-- I told Grier we may go sail the remote control boats at Central Park--- he said OK-- we will see what else we decide to do--- but I am going to try to stay far away from Times Square! That is it for tonight-- I am tired and Grier has settled down after a quick crash game with his cars and watching a race on TV-- what could be better??? hmmmm... you do not want me to answer that!

Friday, September 4, 2009

We are on the rollercoaster again!

What a wild and crazy week--- Certainly not what I had hoped the 2nd week of school to be like! I am not going into a lot of details right now... but we are headed to NYC- Not the weekend plans I had hoped for on this Holiday weekend.... ( I was really hoping to go somewhere with Jeff for the weekend sans kids) to celebrate our anniversary which is today--- Oh well-- Here we come again NYC, MSKCC, and the Ronald! In some ways this week has been long --trying to get answers to questions but when the information started coming in it was very fast-- not fast enough to book a later flight, so we will leave on Sunday afternoon-- We did have a flight on corporate angels but they got the departure city wrong and called to say they had made a mistake--- really.... not the best luck! Grier did make it to school so he could meet his teachers-- and his soccer team roster and schedule showed up in my inbox--- ALL to start on the 8th --- but it will all have to wait! We have a surgery consult on the 8th and the OR has been booked for the 9th! My calendar has been cleared... Jeff is coming with us and we will finally get to see what this "something" is-- I know I just made that sound easier than it will be but I am hopeful that he will do better or the same as he did almost 2 years ago! I will do updates from NYC -- and I am hoping we are back in CLT quickly-- Sorry to be so vague but until we have the consult I am going to not guess on any details- ps-- Grier went to his first Panthers game last night with my mom-- he had a great time!!

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