Monday, April 28, 2008

T-Shirt deadline extended, Plus new payment option!


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

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

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





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

Thanks for supporting the Christenbury family!
Kerri

Saturday, April 26, 2008

One week at home!

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

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

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

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

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

Wednesday, April 23, 2008

T-Shirts

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

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

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

Tuesday, April 22, 2008

Saturday, April 19, 2008

peaceful, quiet... charlotte!

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

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

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

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

Friday, April 18, 2008

DONE with Round 3

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

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

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

Wednesday, April 16, 2008

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

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

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

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

2 more days to go-- :)

Tuesday, April 15, 2008

3 more days-

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

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

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

Monday, April 14, 2008

Day one-- of 3F8 Round #3

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

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

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

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

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

Sunday, April 13, 2008

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

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

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

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

Saturday, April 12, 2008

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

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




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

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

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

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

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

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

Friday, April 4, 2008

Some GOOD NEWS!!

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

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

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

Thursday, April 3, 2008

no news yet--

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

Wednesday, April 2, 2008

One more day of scans to go--

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

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

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

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

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

Tuesday, April 1, 2008

Today went as well as can be expected--- we did our usual wait at MSKCC-- accessing his port was horrible--- he was screaming the whole time-- and the MIBG injection went off perfectly ( almost on-time)-- Grier actually slept through the injection-

The rest of the day was low- key--- he fell asleep at Lenny's--- he is really tired due to all the tantrums today and the lack of good sleep last night... (our neighbors were up until 1am!!!--- having a great time!---AHHHH!)

Tomorrow we will go at 7am for anesthesia for the MIBG scan--- Then we will come back and be under room arrest while we collect a urine sample for 4 hours---

Hopefully, he will be in a better mood --- it is exhausting negotiating EVERYTHING with him---

We did not get a call tonight about the HAMA test--- so I will ask first thing tomorrow morning--

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