Tuesday, April 27, 2010

Grier and I have been back in Charlotte for a little over a week and we have been so busy since our flight landed at Charlotte -Douglas on Friday night..... I have thought about updating but have not had time.... so here it goes... I know I am going to miss some fun moments... and thank yous.... but what is new .. right??

We ended our 3F8 very quickly.... I could not believe how fast/slow the week went -- Anne was with us all week in NYC-- we survived room 807 at the Ronald... actually we all got quite good at walking sideways to get to the bathroom.... good thing we were at the hospital for most of the time.. Anne was amazing help-- I had no idea she got briefed by my mom on all the ins and outs of our 3F8 routine.... I was worried she would be queasy or faint on the first day... now I can say she made it without either symptom...! she was a great hot/ cold pack provider... and also a great distraction for me as Grier slept off the treatment... he did have a different kind of pain during the week-- lots of residual pain in his chest and tummy ... especially when we went back to the RMDH... I think I mentioned that for the first time in 9 weeks of this treatment we went back to the hospital after we had been resting at the RMDH for awhile because Grier was just not right... I did not know if he was having trouble breathing or what so we walked back and had amazing help from our favorite NP~~~ Grier was having lots of pain and basically holding his breath a little so it would not hurt... He got some Dilaudid and all was better.....

We did not have much time for fun during the week... Grier was very excited to go to an FAO party that Candleighters NYC put on for the kids.... He also wanted to give BINGO a try one night at the Ronald so Anne, Grier and I walked down and gave it a try--- he had fun... and actually won twice--- he was thrilled with his $6!! Anne and I were feeling lucky so I walked to the corner store and bought us some lottery tickets... really hoping to win the MEGA "whatever they call it"---!!! We did win ... well... we broke even... actually got our money back!!! It was fun... but not as much fun as we had laughing over the fact that we ordered Pinkberry frozen yogurt to be delivered to the RMDH--- Let's just say it was good but not so frozen since it took an hour to get to us---

 By Friday morning we had a great routine down... Anne was great at holding Grier while I gave the G-shot.... and getting medicine from the 2nd floor as we got ready to go to the hospital... we had planned to fly home Friday night and this was something I usually don't do unless we were going with corporate angels ( which has not happened in FOREVER)--- We were told earlier in the week from one of the doctors that she does not like patients flying after 3F8 on Fridays.... but I explained to her that Grier was suppose to throw out the first pitch for Dilworth Little League's Opening Ceremony and she said since it was a late flight... we should be good-- She is a huge baseball fan too... Anyway.... we knew we would be at the hospital most of the day and that there was no time to wash sheets etc... before we had to leave for the airport-- so Anne took the sheets and towels across the street  to Reliable Laundry --- such a great help... because they were done and folded by the time we got back to the RMDH around 1pm--- all we had to do was repack the Box that we store and clean the room--- Grier was asleep and pretty drugged... he slept while we prepared to leave--- We ended up leaving the RMDH around 4:30.... not knowing what traffic was going to be like getting out of the city... Anne's flight was the same time as ours but she was flying Delta so we shared a taxi to LaGuardia--- that is where the fun began..... Grier was still pretty out of it and not feeling well as we got into the taxi--- we were almost to LGA and Grier started to feel like he was going to be sick.... I had a "bucket"... and was holding that while Anne was going in my medicine bag and getting the nausea medicine for me --- meanwhile speeding our way to the airport--- who knows what the taxi driver was thinking.... Before I knew it we were at the US Airways drop off and Anne and I said the quickest goodbye and got ALL of our stuff out of the cab and off Grier and I went--- He was in the stroller at that point ... very green and weepy... we made it through security... and our gate and finally after home around 9pm--- The week flew by and by the time the weekend was over it was hard to believe that we had even been in NYC for a week--

Saturday morning came really fast at our house..... Grace had an 8am soccer game... we had opening ceremonies for Baseball and then another soccer game followed by hayes' baseball game.... really.... I am not kidding....  and life seems to be going at that same pace since we got home.

Today I have been trying to schedule Grier's quarterly work up--- GULP..... yes.. it is that time again.... I also had to call and make an appointment to have his HAMA test done here in Charlotte tomorrow---  I was really hoping we could combine 3F8 in June with his quarterly work-up but that is not longer allowed anymore.... since so many kids have relapsed in the middle of 3F8 ( also it would be a little longer that 3 months and our Dr said no-- since we are dealing with relapse we need to been on the 3 month schedule)... So, we are back on our monthly trips to NYC--- the hardest thing about that is that it is hard to get in a routine at home and travel every 3-4 weeks-- I really need 7-8 weeks to get anything done!!!  And I really want to let Grier finish preschool--- but guess what..... it is not up to me so we will head out in May again.... You would think after three years of living like this I would be used to it--- but I am not....

I hope this update made sense--- it has been crazy around here... I have had several people tell me I look tired.. seriously.... I am not tired.... ha!ha! I am going to make myself update tomorrow after I go to the Cookies for Kids Cancer Bake Sale meeting that is going to be held at Taylor's Finish Line Festival---  it is going to be an awesome event and 100% of the money from the BAKE SALE will go to pediatric cancer research.... and I mean a check will be handed to a doctor that has a trial that needs funding.....  :)

Thanks for the dinners that were brought while we were gone--- also thanks for the carpooling help to school, soccer, art , and baseball---- Thanks to Maclean for entertaining and baking with Grace-- and Stuart for just hanging with them after school--- :) Also thanks to Jeanna for letting me use your wi-fi card--- it was a great help since I never got my password at the RMDH-- and for the mail.... :)

enjoy some of the pictures on gogriergo.com---











Tuesday, April 13, 2010

I'm back--

It has been forever since I have taken the time to update this blog.... and for the most part no news has been good news.... I thought about updating on our 3 year anniversary date, the 27th of March.... but did not know what to say that was different than the last two years... it is a day I remember well but there are so many other days that are just as important in this journey.... I also think our relapse date has set a new tone for the original date anniversary.... The last few weeks have been hard in my second world... lots of kids we know have relapsed and are back in the fight... some for the 4th time.... it amazes me that research is not anywhere closer to keeping these kids "clean "after they have spent more years doing  chemo, radiation, sugeries, clinicals trials than they have just being a Kid--- I think I said recently that kids should not have "bucket lists"---

7 weeks flew by at home--- Grier went to schol everyday he could and now says he loves school--- We are very lucky to have wonderful teachers that helped him readjust to a normal routine,,,,  T-ball started a few weeks ago.... I feel like he has waited forever to finally be on a team of his own.... He asked for a pair of "slippery underwear" and Jeff found a tiny pair of sliding shorts with a cup-- He was on cloud nine... He also talked me into an airbrushed batting helmet... He loves it and can not wait to wear his helmet with flames....it is amazing what you can find on the internet.... :)

We spent Spring Break in Daytona Beach and had an amazing, relaxing time -- thanks to Aunt Linda and Uncle Ken for sharing their home with us--- being at the beach was very relaxing and the change of pace plus the extra space to spread out made it the best spring break ever..... We had great company for a few days... my cousin Stephan and Lauren, and the Barnettes... we did not want to come home-- but reality set in on Wednesday when the shots had to start again for Grier 5th cycle of 3F8---

Grier and I were home 12 hours and left on Jeff's 40th--- We flew to NYC early Sunday morning and met Anne in the LaGuardia Airport.... She is with us for the week in NYC to help---- really can not say THANK YOU enough to her... Will, and Zanna and George for rearranging their lives for a week so we have help and company.....

Our RMDH house stay started a bit rocky.... had to change rooms for a variety of reasons... around 10:30 pm and basically went to my worst fear... room 807--- I did agree to it-- so you know the old room was pretty bad... not really going to go into the drama.... but it is OVER and we are in the room the we do the sideways shuffle to get around.... there are not too many people that I could share this room with so I am glad Anne is here.... :)

3F8 has been going well--- I guess... yesterday was a pretty normal Monday.... LONG & PAINFUL  but also fun to catch up with the nurses we have not seen in several weeks--
Today the same but for the first time in 9 cycles we took Grier back to the clinic because I was worried --- He was breathing rapidly and would not take deep breaths... he was made and crying when I asked him if his chest hurt and yelled at me that he did not want to talk about it--- we waited and watched and decided we would walk back to get them to listen to him....  I am glad we did-- he was fine and it was decided he was having pain and trying to too breath deeply because it hurt.... a little dilaudid and he was good to go the rest of tonight....

I hope everyone saw Lesa's letter about the upcoming bake sale--- I wil be there unless our scans are scheduled that week--- working .. baking.... and doing everything I can to help raise $$ and awareness for pediatric cancer.. I hope you all join us -- it will be fun :)

And last but not least Thanks to all those helping this week while we are gone.... meals, rides, encouragement, EVERYTHING-- It makes being seperated easier knowing that everyone is happy and taken care of in Charlotte--

Hopefully a better update later...
Amy

Monday, April 12, 2010

Calling All Good Cookies!
Dear Go Grier Go:

 As many of you know, we had a Cookies for Kids' Cancer Bake Sale & Raffle in December 2009, raising over $15,000 for pediatric cancer research in honor of Grier Christenbury.  It ended up being the biggest bake sale in Cookies for Kids' Cancer history!  Glad matched our proceeds, so we were able to raise over $30,000 altogether!  WOW!

I am coming to you once again in hopes that you are ready and willing to rally again in an effort to raise funds and awareness for pediatric cancer research.  I have been working with Melissa Gibbs, the mother of Taylor Gibbs, on a Festival to honor all of these 'little warriors'.  Taylor has Leukemia and was also diagnosed at the age of 2.  He is currently scheduled to finish his treatment in April after a long period of remission...they are finally nearing the finish line!

Hence, Taylor's Finish Line Festival.  Taylor is the grandson of Joe Gibbs of Joe Gibbs Racing.  His family approached the Charlotte Motor Speedway about hosting a Festival there during Speed Week here in Charlotte the week of May 23rd.  What better way to honor these children than to have a carnival?! 

Taylor's Finish Line Festival will be from 2:30-7:30(carnival) and from 7:30-9:30(live stage shows starring Toby Mac and Fireworks).  We will be honoring Grier Christenbury, Taylor Gibbs, Marnie Howiler and Cade Galombeck(who was just diagnosed a few weeks ago).  These are only four of the many children in our area that are battling chilhood cancers.  There will be a Kid Zone with carnival rides, midway games, inflatables, hot air balloon rides, live stage shows, appearances from Nascar drivers and much, much more.  And, of course, a Cookies for Kids' Cancer Bake Sale Tent inside the Festival!  There will also be a Silent Auction and an awesome fireworks show!  Please go to 
www.finishlinefestival.com for more information.

I am looking for volunteers once again.  We will be having a Bake-a-thon on Saturday, May 15th from 6am-6pm at Johnson & Wales.  They have graciously offered to let us use their facilities for this wonderful event.  We will be working in 4 hour shifts.  We would like to have 75 bakers for each shift.  The responsibilities will range from baking to packaging.  The shifts will be as follows: 6am-10am, 9am-12pm, 11am-3pm, 2pm-6pm.  Ideally, I would like to have volunteers from our WDS and their family and friends to cover the shifts from 9am-12pm and 11am-3pm.  Of course, we will take volunteers wherever we can get them, but we think it would be fun to have Grier's peeps all there at one time.  We have a wonderful WDS community and I think that our bake sale in December created a more amazing bond than many of us already had before.  You can contact me at 
lesa.helbein@gmail.com if you have an interest in volunteering at the Bake-a-thon.  Please let me know what shift you are interested in covering.  However, time is of the essence!  Since we are using the facilities at Johnson & Wales, we do have to have a list of names compiled for our Bake-a-thon.  So, we will need contact info as well.  If you could include your name, address, phone number and e-mail when you respond that would be great.  We will need this info by next Friday, April 16th!  If you can't commit until after that date, please contact me and we will make arrangements...we understand this is short notice.

For those of you who may be thinking..."I can't bake".  Please don't let that stop you from volunteering.  Jacqueline's in NYC is donating 15,000 already made up frozen pucks of cookie dough!  All we have to do is bake and package them!  Whew!  There will be 5 different kinds of cookies from 5 of the most popular race car drivers.

We are also contacting many of the local bakeries who helped with our CFKC bake sale.  We already have a commitment from Amelie's, Great Harvest, Polka Dots, and Suarez.  I'm still working on some others.  So, if any of you know someone who owns a bakery...please let them know we are looking for more 'good cookies'! 

Also,  we will be having a Packaging Party at Joe Gibbs Racing on Saturday, May 22nd from 9am-1pm.  We would love all the volunteers that we get to help with this as well.  Please tell all of your family and friends!  Any help would be greatly appreciated.

And last, but not least, the Festival itself!  We will need volunteers for Taylor's Finish Line Festival as well.  We will be setting up from 9am-2pm and then we will also need to cover shifts from 1pm-5pm and 4-8pm(with tearing down on this shift...men would be appreciated for this task:-)).  Our volunteers will only be working the Cookies for Kids' Cancer Bake Sale tent.  Our goal will be to raise awareness while collecting monies for our donated baked goods.  100% of our proceeds from the bake sale will go to Cookies for Kids' Cancer.  While, all the proceeds from the Festival will go to Make-A-Wish and Levine Children's Hospital.

We are also wanting all the homemade baked goods we can get our hands on, so please feel free to bake some goodies for our big event!  We will let you know the details of drop-off location as the date gets nearer, but please don't hesitate to call if you have any questions.

If you have an interest in volunteering in any capacity, please contact me at 
lesa.helbein@gmail.com.  We do need to have as many volunteers as possible in place by next Friday, April 17th.  We will need to have time to obtain credentials for volunteers at the Speedway, as well as, Johnson & Wales.  Again, we will need your name, address, phone number and e-mail address when you respond.  Thank you so much in advance for considering to volunteer your time for this great collaboration of communities in an effort to raise awareness and funds for pediatric cancer research.

I hope that some of you have seen the new Glad commercial highlighting Cookies for Kids' Cancer.  If not, keep your eyes out for it!

Also, please go to 
www.cookiesforkidscancer.org and go to their Blog Section...scroll down and you will see highlights from our CFKC bake sale here in Charlotte in December.  You might even see someone you know!

And a special 'thank you' to Janis and Melissa for giving us the opportunity to reach out to Grier's WDS community for support in our efforts to fight childhood cancers!  Without them, none of this would have been possible...well, maybe...but it would have been a lot more work and we would have all been even more sleep deprived!

I'll look forward to hearing from you all soon!  It will be fun to get back into full 'cookie' mode!

Please forward this to anyone you know that you feel would like to participate!  We can never have too many 'good cookies' or baked goodies! 

Sincerely,
Lesa Helbein

GO GRIER GO!!!  
 



 

GO STEEL FAB!

GO STEEL FAB!

Go Grier Go Magnets are Here!

Go Grier Go Magnets are Here!

Grier's address in NYC

Grier Christenbury
Ronald McDonald House of New York

405 East 73rd Street

New York, NY 10021

Before 3F8

Before 3F8

After 3F8

After 3F8
30 minutes later

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

iGive.com

Grier leaving NY-pres and going back to MSKCC

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

Grier going for a ride in the ambulance across the street

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

Grier patiently waiting surgery to remove tumor

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

Go Grier Go Picnic in the Park

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

On the way to NYC!

On the way to NYC!

Grier at the "new" clinic at CMC

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

Some of our team at the Hopebuilders 5k

Some of our team at the Hopebuilders 5k

HOPE IS GOOD!!

HOPE IS GOOD!!

Supersib- GRACE

Supersib- GRACE

SuperSib-- HAYES

Grier and his Wonder Pets fly boat cake!

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

Grier & Grace at Covenant

Grier & Grace at Covenant

Grier & Pat

Grier & Pat

Go Grier Go!

Go Grier Go!




Jack and Charlie wearing Go Grier Go T's

Jack and Charlie wearing Go Grier Go T's