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

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--

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’!

CBS news footage at the Ronald

CBS early show footage on a RMDH house family -- Morgan has NB-

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!!

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!!

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-- :)

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!

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--

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 ---

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--

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!

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--

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--

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--