What a day!

So many things are winding down because summer vacation is almost here but there are so many things that need to get done right away (forms to fill out, projects, etc.)--- Today was a crazy day for Grier and I--- As I think about it now that he is asleep-- I can not believe he did so well with all that we did today--

Today was the last day of preschool--- I truly think he will miss going. He looked forward to going and talked about what he did that day for days after!
After school, we went to clinic for a HAMA blood test--- not a favorite activity for either of us-- he got through it with only a few tears-- Sharon, Dawn and Jennifer were trying really hard to distract him-- but he is smart enough now to remember what will happen after the "magic" cream aka lidacane goes on his port-- We went to lunch... lost the parking deck ticket--- jumped through CMC red tape to get a free pass to get out of the deck....went to Kinko's to mail the blood to NYC ( a new guy helped me so we will say a prayer it gets there in time!)...went to Centura to get forms notarized ( and met some really nice people that recognized my go grier go bracelet... see there is "power in a bracelet!"--- and then asked if that was "Grier"!! He entertained them for a little bit-)... dropped off a generic form of Accutane to exchange for the brand name version at Walgreens.... picked up Hayes and Grace... went to swim team ...... dinner.... gas.... and back to Walgreens...then sat in the parking lot on the phone with insurance arguing the cost of the accutane ($8 vs. $354.00)-- apparently the BRAND name is REALLY expensive and I have only been charged for generic in NY but always given the BRAND name! Any other time I would not care about generic but size matters this time--- Grier is 3-- he swallows 3 pills a day the size of a jelly belly-- the generic version is larger-- the size of a Mike and Ike or a Hot Tamale! So I am trying to reason with them and they really do not care-- So-- I end up eating the difference and telling the woman I will appeal it! I have gotten good at doing that-- :) Again it was one of those times-- I thought.. Did she just hear me say my 3 year takes this for a cancer treatment--???
AM I making you tired yet?????
I am sure a lot of you had this same day (maybe with or w/o the medical drama!)-- I did think a few times that May is like December--- it is hard to slow down and enjoy the end of school when there is so much that has to be done--- And since cloning is not an option --- I guess we all continue to do it !

We should hear from MSKCC by Tuesday night--- I will call them on Wednesday morning just to be sure --- I am assuming if he is HAMA negative-- we will head to NYC on June 8th ( yes-- his 4th birthday) and be there for a week of 3F8-- Of course -- All of this is based on his HAMA test result--

That is it for now-- Thanks to all that bought a GGG T-shirt--- And to Kerri for organizing all of it--- A teacher had one on at school today and some of the kids said... "I have that sticker on my car!" I also forgot to thank Leslie Ford for printing tattoos--- that say Go Grier Go-- I have seen lots of kids with them on! Awareness is the only thing going to change the outcome of Neuroblastoma--- !

FYI--- if you have not heard yet about this news that will also bring more awareness -

September 13, 2008 will now be recognized as 'National Childhood Cancer Awareness Day' as a result of a Senate resolution introduced by U.S. Senators Wayne Allard (R-Colo.) and Hillary Rodham Clinton (D-NY).

Happy 'early' Birthday to me!

Grier had his birthday celebration at school today!! As you can tell from the pictures, he LOVED it!! I just wish I had my video camera!!
Sorry for the short update--- but I really have no news to report!

Not much to update--- Everything is going great around here---
We are enjoying the busy time the end of school brings--- I forgot how much we missed last year!! Grier is about to turn 4 on June 8th--- !!! It is very hard to believe!! I still look at him and see a 2 1/2 year old sometimes!! Maybe it is his size!!! Maybe it is the fact he is not potty-trained-- who knows--- But I have a lot of work to do this summer!!

He will have another HAMA test done on the 29th-- We are in the 4th cycle of accutane-- not looking forward to the usual side effects that it brings but we will get through it--

That is it for now---Thanks for checking in!!

We have survived a nice week at home-- busy but very NORMAL!

Our whole house has had allergy issues but that has gotten better so we are so glad to be on the mend-

Grier ( and I ) went to school for two days-- He is gradually getting adjusted-- His teachers are the best and I hope that I can sneak out for at least half a day before summer break!! I have tried to bribe him but it is not working-- he did tell me that Grace could stay with him instead of me-- But I quickly reminded him that she goes to her school!

If you have a second --- check out this blog... Charlotte Smarty Pants www.charlottesmartypants.com -- It is fun to read and I have learned quite a few tricks from it lately-- You will see a picture of me and the kids today-- The picture has a long story behind it-- but the short version is that Hayes was having a "tween" moment! I also answered lots of questions and hope that I raised some awareness for Neuroblastoma and pediatric cancer-- and I answered some fun questions too!

Tomorrow is Mother's Day and I wish all of you a great one-- Our NY social worker told me that everything happens for a reason so enjoy Mother's Day in Charlotte -- maybe I should write a book with her little email comments-- ! Don't worry Diane -- we will enjoy the day and actually everyday while we are at home!!

Just when you think you know what is going on with the new routine!

"There is nothing easy about any aspect of battling this disease.
As parents you have so much responsibility and so little control!"

Yesterday was one of those long days---I was busy making a RMDH reservation and talking with Corporate Angels--When I emailed our social worker in NY about a reservation at the Ronald-- she asked if we were coming for anything else other than 3F8-- I said no-- and asked her if she knew anything about his HAMA test yet-- She said it will be late Tuesday-- I replied saying Tuesdays are long when you are waiting for them to call-- And she said" There is nothing easy about any aspect of battling this disease. As parents you have so much responsibility and so little control! So I just continued to go about my day trying to let go of the control I wanted!

We were waiting for a call from Sloan and hoping not to get a call at the same time!! I know-- does not make sense! But we have always been told no news is good news with HAMA-- if you do not get a call then you are negative-- but they will call if he is positive because you do not need to do the shots-- The "call" comes late-- and most NB parents will tell you you can assume after 6:30 you are negative with no call! So... we left about 6:30-- went to dinner and to watch a Charlotte Christian baseball game--- I checked my messages a few times while I was gone and there was nothing-- I figured he was negative-- BUT wanted to make sure-- so I emailed our NP this morning and she said-- NO-- do not start shots-- we were going to get a call this morning-- Grier is HAMA positive again-- He will be retested in 4 weeks-- He will continue on accutane-- he has 3 more cycles left- So, another lesson in the NB world-- do not ASSUME anything-- !

Now-- I am going to cancel the reservation and flight-- take a deep breath... and change gears a bit because we will be in Charlotte next week and not in NYC!

THANKS!

In about a month you should start spotting Go Grier Go T-shirts everywhere! Although the response wasn’t what I expected, we did sell a total of 201 shirts -- Over $1,600 profit going directly to the Christenbury family. Grier’s battle to keep his body free from Neuroblastoma is ongoing, and the frequent travels to New York are costly. The Christenbury’s are grateful for your continued support. If you ordered shirts, I will contact you when they arrive.
Thanks,

Kerri Norwood

Today we went to our Charlotte Clinic!! Grier did amazingly well with accessing his port--- he screamed for a brief second and our Nurse (Jennifer) was so fast it was over before he knew it-! His counts looked good and Dr. McMahon ( or as Grier says.. 'what man?) seemed to think he looked good too-- He has 3 more days of accutane so some of his skin issues should clear up soon- After the appointment we went to Kinko's to Fedex his blood for the HAMA test--- It will be in NYC tomorrow morning-- And hopefully it will be HAMA negative! We will know by Tuesday night-

We have not been at preschool this week but if all goes well he will go tomorrow--- ! He has had a little cold for the past few days and they have had a virus in the school so we are being careful- I am trying to not be so careful that I kept him in a bubble---

That is it for now--- prayers are needed for all the families dealing with cancer-- and there are lots!

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--

We made it---!

We arrived at the Ronald around 7:30pm--- not too bad!!! We had a weather delay in Charlotte because of fog in LGA-- but at least we made it tonight-- lots of flights were getting cancelled--  So, a few hours late is not that bad-

We had  a quick dinner at Southern Hospitality and then walked back to the RMDH--  The weather is so nice---- a warm 50 degrees!!!  We are not in room 807--- so I hope this new room does not have any special noises in the early morning---  We just have loud neighbors!!

Tomorrow will be a low key day--- We will go to the clinic and have him accessed (YUCK!!) so they can inject the MIBG radioactive dye--- And that is it for the day--  There were some NY Yankee tickets available for tomorrow--I am trying to talk Jeff into going-- the only problem is there are 2---!!  

Until tomorrow-- 

Here we go again!

We will leave for NYC on Monday...(TOMORROW!!!) I can not believe it-- YES -- I have been home awhile but I think that makes it harder to get back into the NB fight mode!!
We have had several corporate angel flights cancelled this time so we just booked a USAIR flight--- !! I was going to go crazy with all those phone calls this week regarding changing flights-- so we decided to book a flight instead of waiting to see what happens at the beginning of the week--

The good news is that we will finish accutane tonight--- YEAH--!! His mood swings have been trying and we basically walked on egg shells last week!! His skin was much better this time--- we used SWEEN creme ( a tip from Marett's friend) and it seemed to help--- LIPS are the hardest to keep from cracking especially when the wind and cold came a few days ago!! He will have 14 days off -- and then back on again for the 3rd cycle-- There are 6 in total-


He will have an MIBG injection on Tuesday -- then a MIBG scan on Wednesday-- And Thursday he will have a CT and Bone Marrow tests-- I hope to be home by Friday-- but if the HAMA tests says he can get another round of 3F8 then we will stay next week!!!

I guess the next update will be from the Ronald--- maybe the weather will be warmer than here???

1 Year~~~ we made it with the help from so many!

This is the day last year that changed our lives forever-~ I have thought about this anniversary a lot lately. I have written this entry a million times in my head-- I did not know whether it would bring a sense of sadness and fear or a sense of hope and joy— And I can say it has done all of the above--- I have found myself in quiet moments re-living moments of last March 27th-- The hospitalists tone when he so abruptly told me what was wrong with Grier. The phone call I made to a friend trying to speak when I could not. The text message I sent to a friend that said NEUROBLASTOMA (not knowing exactly what that was)~ The many faces of family and friends that I saw at 11pm at CMC… and for days and weeks after the 27th. The first meeting with Dr. Longee and the hope that he gave us. The shock. The disbelief. The tulips. The visits with friends and family. The blue Go Grier Go bracelets. The army of people that took care of our family during the early days. The wonderful 7T nurses and staff. The emails and cards. Susan our recovery room nurse. Pat Taft. The singing at his bedside of Razz Ma Tazz right after one of the many early procedures by Mrs. Leary. And I could go on and on … But there are many things I do not remember and the blog has been my saving grace!
The blog has helped me stay in contact with friends and family without spending hours answering phone calls and emails—But I must admit it makes me very tired to read the early entries – I can not believe Grier went through so much as well as the rest of our family, especially the supersibs—It also gave us strength from the entries from Grier’s team… there were some that would write everyday and still do!!
I can happily say we made it with the help of family and friends and our faith—WE MADE IT! Grier did far better than expected and in some ways carried us through this-- We are now living WITH cancer and still live day by day—I know some will find that odd but it is the way we have survived for so long—
I am reminded everyday (yes, I read caringbridge sites too, and I am a lurker!!) that we are not the only family living this way-- we have met some wonderful people from all over with their own pediatric cancer story and they are just as strong and courageous as Grier and our family—I remember going to the clinic for the first time and meeting Julia… she was dressed up in a princess outfit with a grin on her face—the nurses and staff were welcoming to all that entered and I was numb—but gaining strength watching the veterans of the clinic—and now I can say we are a veteran of not only our Charlotte Clinic but MSKCC as well-- WE MADE IT! We made it through a 10-hour surgery (with a huge sense of peace around noon that day). We made it through so many ups and downs. We made it through the first “buzz” cut and later the first sight of him bald. We made it through 7 rounds of chemo- We made it through so many scans. We made it through countless pokes and injections. We made it through 14 radiation treatments. We made it through 2 cycles of 3F8. We made it through the unknown. We took all of this and made it our new normal— We do not take any of this for granted… We know of far too many kids that did not make it this past year—They “lost/won?” their battle with cancer and became ^Angels^. Pediatric Cancer research is still lacking appropriate funding—we need to do more so these brave kids that fight everyday can just be normal kids – and a cure can be found so no family has to have an anniversary of a diagnoses!
I wish I could say we are done… but we are far from it- We still need a cure! Or the very least a treatment that is not so toxic to the kids.
Each set of 3-month scans brings back a lot of uneasiness and fear that the scans will find more NB in his little body. And if they do… we will make it again and start all over knowing we have wonderful friends, family and strangers that are supporting us everyday as we battle the beast called Neuroblastoma—(I know what it is now!!!)
Thank you again for all that has been done for our family this past year… meals, rides, donations, organizing help, wearing a Go Grier Go Bracelet, Putting a magnet on your car, prayers and good wishes, phone calls, visits, gift cards, flowers, TOYS, hats, cards, and the list could go on—
This day will be marked in our lives forever… but so will all the acts of kindness given to The Christenburys— THANK YOU! THANK YOU! THANK YOU!
GO GRIER GO--!!

Happy Easter!

A picture is worth a 1000 words!!!

We are still living our new "Normal"

I can not believe it has been TEN days since the last time I updated this blog!!! We have had a very normal past ten days at home with a few breaks for me--- the beach and a wonderful visit with a friend and her family- I was lucky enough to be there when she had her second baby-- Some days I look at Grier and forget that he has NB-- it is easy to do these days since treatment has stopped for awhile-- I am thankful for these days-- but hope that his HAMA goes away so we can get 2 more rounds of 3F8 -- A total of 4 has better odds so that would be great-

Grier is doing well-- the 14 days off of accutane have been great... he will start that again on Monday--- so we will once again deal with mood swings and DRY skin!!!!!-- We did find out that we will be in NYC April 1-3 for scans-- As you all can imagine, scan times make us nervous but it something we have to do-

The most exciting news today was that Grier made a visit to preschool--- he went and played on the playground with Mrs. Leary's class at First Pres! He was VERY timid at first but warmed up quickly to all 3 teachers!!! He later warmed up to some of the kids on the playground-- By the end of the visit he had let go of my finger and was sliding down the slide... and driving a truck-- It made my day to see this happen-- He told the teachers he wanted to come back and play so I plan to do that as time allows- It is my hope that we ease back into school before the end of the year-- obviously waiting for results of the April scan before we make the full transition-

Change of plans--- not going to NY this weekend-

Well-- As you can probably tell we heard that Grier HAMA'd (the phone rang @6:30pm!)--- We will not be going to NY this weekend and we will continue the Accutane every 14 days--- He will be retested in a month to see if the HAMA goes away-- we are still scheduled for the 3 month scans the first week of April-- Other than that we will enjoy some family time in Charlotte-- He is doing really well-- having a lot of fun and enjoying being at home--!

Please see below for an explanation of HAMA--

What is HAMA?

HAMA stands for "human anti-mouse antibodies." HAMA measures how strongly the body's immune system is reacting to 3F8. 3F8, like most monoclonal antibodies, comes from a mouse white blood cell. This means that 3F8 looks different from a human antibody, and a human will form antibodies (HAMA) against 3F8. If a patient has HAMA, there is no point in doing 3F8 treatments because the HAMA will block the 3F8 from getting to neuroblastoma cells. However, HAMA can disappear, and 3F8 treatments can then resume. Patients are checked for HAMA by means of a blood test. Patients with HAMA do not have pain or other side effects of 3F8 treatment, but patients without side effects sometimes do not have HAMA (and can continue to be treated with 3F8).

We are doing OK!

I just wanted to write a quick update to let Grier's team know that he is doing well-- We finished the first cycle of Accutane today-- He made it through with some skin issues and a few tantrums!! But I will take that any day if we can stay home for 14 days straight! We did go to the clinic last Thursday for another blood test-- we had to FedEx the vial to NY so they would get it in time to run the HAMA test-- Hopefully he will be fine to continue with 3F8-- we will know by Tuesday night-

This week we will begin shots on Wednesday to prepare for 3F8-- cycle 3--- We need to be in NYC by Sunday the 9th-- And we expect to be there for a week for 3F8 only! It is hard to believe how fast this time at home has gone--

I also have a few Thank Yous--- Thanks to Nancy and Ralph for sharing their house-- I was able to rest and relax with friends for the first time in a year! It is amazing what the beach can do to your attitude--! Thanks to my friends for allowing me to relax in my favorite spot and letting me set the pace this weekend! Also-- thanks for the dinners that are still coming to my house-- And THANKS to everyone who has jumped on board with the Go Grier Go magnets ( especially the stores that have allowed us to use them as a pick-up location!)-- I have seen them as I am driving and I look forward to seeing more and more-- Hopefully people will become aware of neuroblastoma when they see the magnet !

I will update by Tuesday to let everyone know the results of the HAMA test--

If you would like a magnet--- please see earlier posts-- lots of stores are helping us sell them!

More ways to purchase a Go Grier Go magnet!

Drop by these local stores:
1. Winestore (http://www.winestore-online.com/) at the corner of Sharon & Colony
2. T. Reid and Company (http://www.treidandcompany.com/) 429 East Blvd.
3. Alphabet Soup Gifts (http://www.alphabetsoupgifts.com/) in Sharon Corners-4724 Sharon Rd.
4. Charlotte Swim Academy (http://www.charlotteswimacademy.com/) 9315-A Monroe Rd. after 2/28/08
5. Black Forest Books and Toys (http://www.blackforestbooksandtoys.com/) 115 Cherokee Rd after 2/27/08

Or Contact:
1. Trisha Riesmeyer at eriesmey@bellsouth.net
2. Mary Ellen Paine at spaine@carolina.rr.com to arrange pickup at First Presbyterian Weekday school
3. Hannah Blanton at hblanton@carolina.rr.com to arrange pickup at Covenant
4. Betty Graybeal at cgraybea@interserv.com to arrange pickup at ETES after 2/29/08

Magnets are $10.00 each. Please make checks to Go Grier Go.

Thank you again for helping to support the Christenbury Family!!

Go Grier Go Magnets are Here!

Help support Grier and the Christenbury family by purchasing a Go Grier Go magnet today!

You will not only be supporting the Go Grier Go Fund to help defray medical & travel expenses for Grier's treatment, but you will be helping to fight Neuroblastoma! A portion of the proceeds will go to www.Bandofparents.org, an organization founded to help raise funds for neuroblastoma research.

$10.00 per magnet

To purchase yours today:

1. Contact Trisha Riesmeyer at eriesmey@bellsouth.net to arrange for pickup

2. OR - If you are a family from First Presbyterian Weekday School, contact Mary Ellen Paine at spaine@carolina.rr.com to arrange for pickup.

2. OR - contact Hannah Blanton at hblanton@carolina.rr.com to arrange a pickup at Covenant

3. OR - Drop by Winestore, located in the new shopping center at the corner of Sharon and Colony Rd near Southpark, to pick yours up starting Tuesday, February 26th.

** Look for more local area stores for pickup in the week's to come.

**If anyone is willing to be a point person at Elizabeth Traditional Elementary School, please contact Trisha at eriesmey@bellsouth.net **

Good News!

Good News-- We heard that the Bone marrows, both aspirates and biopsies are clean-- whew! Now we can breathe a bit until April when we have the next set of tests-- Test time makes me nervous!

Thanks for all my emails today-- that "little birdie" was busy telling people that is was my birthday today! We had a nice LOW key day at HOME!!! Who would have thought that is the way I would like things now??

Grier did OK with the accessing of his port! I put numbing creme on it as we walked out the door to take Hayes and Grace to school--!We got the clinic about 45 minutes later and Nurse Dawn did a great job at minimizing the trauma and Sharon ( Child Life) came to help distract-- And it was over quickly and with only a few tears! I asked Grier if he thought the numbing creme helped and he said NO! :)

The accutane is going well--- Grier is very proud to tell people "I can swallow Pills!"-- He had a few moments of tummy pain and nausea-- but I am assured that it was due to accutane...!

So.. it was a good day at our Charlotte Clinic-- I wish that we could be treated there full time-- NY is nice but it is not home-- We just need a FULL-time Neuroblastoma Researcher on board at CMC!! We are still waiting on bone marrow results so I will let you know as soon as we know something!

We have had two days at home and they have been great EXCEPT for the nighttime-- Grier is having some residual pain from 3F8 and it seems to hit at bedtime!! So.. we are very sleep deprived at our house!

The good news is Grier had no problem swallowing the 3 pills today-- It surprised me!
He swallowed the first one and I checked in his mouth and it was gone... then the second one was swallowed... checked his mouth and it was gone! That helps so much...

We have started our new routine of using a ton of lotions (unscented like aquaphor!)..accutane causes severe dry skin.. peeling.. and cracked lips! It also causes headaches and mood swings.. ie. temper tantrums! I am not sure I will be able to tell if it is the pill or just the fact he is 3!

He has a ton of energy!! We have spent a lot of time outside playing baseball, golf, riding bikes, and driving his F150! The weather has been great... such a difference from NY!

I will update on Thursday after we go to the clinic...
Amy

Home Sweet... Jameston!

We had a great flight last night-- we ended up leaving Newark 30 minutes early!!! We arrived in Charlotte at 10:00-- Hayes, Grace and Maggie were waiting for us in the hanger! Grier was so excited he ran to them but stopped quickly because the automatic door did not open!!

During our stay at the Ronald ... Grier would "drool" over this playmobil toy behind the glass display--- He kept telling me he wanted that toy-- I told him we would see if Susanne's toy store (Black Forest) had it when we got back to Charlotte--- It was an ambulance(equipped with all the medical supplies!!) Yesterday-- he would not stop taking me downstairs and showing me this ambulance... so after a phone call to our "Charlotte family"-- they found the ambulance! Grier was so excited!! He has not stopped playing with it-- Due to the excitement of being at home and the new gift... is was a late night at our house!!

We start accutane tomorrow!! I hope the side effects are minimal... we will go to the clinic on Thursday to have the port accessed for the first time-- Hopefully the numbing creme will control the discomfort--

Thanks again for EVERYTHING-- meals.. rides for Hayes and Grace.. cards.. gifts.. EVERYTHING!

Done!

Grier finished his second cycle of 3F8-- and we have finished all appts. at the clinic-- 13 straight weekdays of being at the PDH!!! The amazing thing is he went each day with a smile on his face and no complaining!!

We are letting him sleep off the narcotics-- I hope he wakes up like he did yesterday with minimal tummy issues-- we are going to start packing and cleaning so we can head back to Charlotte tomorrow--- We will be back late-- Our flight leaves Newark at 9:00pm!

The front desk stopped us again to let us know we had a ton of cards and packages-- I know they will be glad we are gone!! Thanks to a few special groups--- Olivia and her friends at Sharon Elementary...The Covenant Miracles... Steel Fab major league team...First Presbyterian Weekday School.. Covenant 4's.. And Jeff Gordon #24 and his team--

We are glad to have all these procedures behind us and are looking forward to a little time at home!

Hearts.. Hearts.. and more Hearts!!

Happy Valentine's Day!! We had a really nice day at the hospital!! :)
3F8 went as well as it can--- he did have more than normal pain--- it is really amazing how each day is so different!! He slept for awhile at the hospital-- woke up with a terrible headache and then we left-- He finally came out of drug induced haze today at 7pm!! It has been a long time(since Sunday night) that I have heard his sweet voice talking about cars and such! He got a new "blue blackbird" car in the mail today and he thinks it is fast!!

Today we were told the next phase of keeping Grier NED (No Evidence of Disease)-- he will begin taking accutane-- he will take these pills for 14 days and then have 14 days off-- I guess I better start thinking how to get him to swallow pills! We will be back in NY the 10th to start the next round of 3F8-- Hopefully the two treatments together can keep NB away for the next 5 critical years-- NB relapse is so common! We will have to go to our clinic at home for blood work next Thursday-- but at least we will be at home!!

I had to laugh today about all the mail!! The front desk at the Ronald has been overworked with all the cards and packages coming to room 807!! They have hinted that all week to us as we have picked things up! We have so many cute cards-- and lots of hearts everywhere!! Thanks for thinking of him ! Grier passed out some Valentine's today to the nurses and a few friends!

Tomorrow is the last day of this cycle!! And he will have the needle removed from his port and be free from a line hanging down since March 30th!! I can not wait to see him without a tube!!!

Thanks again for everything--- AND before I forget... Thanks Andrea and Sean Smith for my surprise!!! I can not wait to use it-- I have walked by BLISS a lot during our walks and know exactly where it is--- That was so nice!!!

We climbed a few hills today!

AHHH! Wednesday-- we made it over lots of hills/mountains today!! First was the awful weather-- pouring down rain + snow on sidewalks and streets = a huge slushy mess that made a 6:45am walk to the hospital not fun!!! And killed my running shoes!! Yes-- I know rain boots would have been the right shoe to wear-- but when you are traveling this way-- you pack light!

We got to the hospital--ready to hurry up and wait for the right folks to take the ethanol out of his line-- (he is in a study... so you read that right!! They lock his port with ethanol in the hopes to prevent line infections instead of heprin) Well-- they did not come in until 8! AHHH! They finally got there and we were ready to get the white medicine-- AND the port was clogged! OK-- Grier was very patient while they worked on the tube hanging out of his chest--- so I was taking his lead-- After many attempts-- the look came from the team-- "we need to change the access needle to see if that was the problem"-- AND this was going to be the first time-- so they decided to use gas for anesthesia -- then they could work on the port and do the bone marrows at the same time-- By 9:15--all of this was underway!! Now -- that is enough for one day but we still had 3F8 to go!

3F8 went as well as it can -- I guess!! We left the hospital and he sleep until 5pm at the RMDH!! And now we are trying to get him to eat---!! He did pack Hershey kisses to eat this morning after the "white medicine" --He only ate 1 and lost that soon after the antibody treatment was over!- We are trying to get him to eat something besides candy! All those narcotics are killing his appetite!

Happy Valentine's Day to Everyone!! Thanks for caring so much about Grier and our family--

ps-- I love seeing all the new people that have signed the blog!!!! Thanks!!

200th POST!

Today went much better in the world of antibody treatment--- we managed to get through the 50 minute infusion without a breathing or blood pressure crisis. We did have something new-- HIVES!!! He was covered all over his face and a little on his shoulders-- Again this is to be expected-- After he fell asleep we noticed his bottom lip was VERY swollen-- and even since we have been back to the Ronald he is still swollen in his face-- Hopefully that will wear off soon as well as the bad headache!

Tomorrow-- the plan will be different... Grier will have anesthesia first thing in the morning and have bone marrows done in 4 locations-- then we will head over to the 3F8-
This was suppose to be done on Friday-- but was moved to Wednesday--

Thanks again for all the cards and gifts--- He looks at them as he feels up to it-- so it takes a while to get to each of them!! Thanks to the kids at ETES in Mrs. Hayles, Ms. LaRusch, Mrs. Graybeal, and Ms. Riegel's classes-- (I hope I remembered them all) The cards were very cute-- And thanks also to First Pres Weekday school-- and Emily's preschool in Virginia!!!

This is the 200th post on gogriergo.com--- thanks to all that have left messages over the last 11 months-- They have helped us a lot--- And thanks to those that are "lurkers"-- (David Shroyers word!!!!) Go and ahead and sign the blog so we know who reads it!!

I almost forgot--- It is snowing here!!! Hopefully we will make it to Sloan without slipping tomorrow!!! It is going to change to ice tonight---

IF this is doing Great.. what is not doing Great?

Should I start by saying... I hate 3F8 Mondays... or I hate cancer--- or just both!!
Today was harder than the first time we did the antibody treatment--
It started with the brisk -9 degrees walk to MSKCC--then the dreaded finger stick!! That always starts the day in a bad mood-- Then we WAITED-- Mondays are very crowded because everyone is getting ready for their treatment plan for the week-- by 12:00-- the 3F8 started and soon after the puking started ( this caught us off guard-- the silkie, grey cat was ruined for the treatment).. then the oxygen problems and then the low blood pressure 55/36?-- all happened almost all at once--- He did not recover until about 6pm-- and we walked back -- and he just got up!! It is 8:31-- so we can say we had an eventful day!! And they said we had a great day!! REALLY???

We did get a call from Corporate Angels-- the first call was a flight for Monday evening at 9:00pm--- I told them .. NO thanks--I will be home by then!! And then they called back and had something for Saturday night @ 9:00pm-- not my ideal plan-- but I told them we would take it-

Well-- As I finish this blog I am happy to report Grier is at least sitting upright--!! He asked for a drink-- so he is gradually coming back from the narcotic haze he was in!!

Thanks for all the Valentine's!! When we returned from the hospital tonight we had a mound of boxes and cards by our door!! He has had a good time opening the cards-- and enjoying the gifts-- his new favorite is Valentine's Day candy corn from Dylan's candy store!! And Cars fruit snacks-- That may be his dinner tonight-- whatever he wants .. right?
sorry for the scattered thoughts-- I must be tired!!!
Amy

Another weekend is over in NYC--- Not much to report!!
Grier has been a little sore from the mediport surgery--- He is not thrilled when it is shot time-- and he seems to have no appetite today-- maybe he has some side effects from radiation-- who knows??!
The weather is bitter cold-- we had several snow showers during the day--- and tomorrow morning the temp is going to be zero and windy!!! It will be a brisk walk to MSKCC!
We go to the clinic around 8 and will expect a LONG PDH Monday--- Hopefully 3F8 will start before noon so we can get back to the Ronald--- This is the week I dread the most so let's hope it goes by quickly and without complications--
We are not sure about coming home on the 15th-- it may be late on the 16th-- I really hope a late Friday corporate angel flight comes up-!!

Perfect Timing !

Today started before the sun was up just like the last 7 days!!! And with Christenbury luck-- we had a glitch!! Grier was in the IV room to be hooked up to his IV pole--- and they went to flush one of his lines and noticed it looked like it was "dirty"--- after washing it off with an alcohol pad--- it became clear the white tubing was leaking because it had a cut in the line--- After almost a year the hickman he had finally worn out!!!!!! I was a little panicked at first because of the thought of an infection in the blood stream-- but he did not have a fever-- they put gauze on the line and used the second tube-- Whew!!! I also thought they were going to have to start an IV in his arm!! So.. It was a very good thing they were pulling that line today--- Perfect Timing!

Grier finished radiation - woke up from anesthesia and sleep for a bit in his stroller--- then we took him to the OR around 9:30 to be sedated again for the mediport surgery-- he was done and in recovery by 11:30-- and we went back to the PDH for a quick check up-- then back to the Ronald by 3pm--- He is doing fine-- he does not like bandages-- so seeing the two new ones on his chest is a big deal--- but we quickly got him dressed so they are out of sight out of mind--hopefully the soreness will be controlled by the medicine--

We have the changing of the guard tomorrow--- Jeff comes to NYC and my mom is back in CLT!!! We will have a low key weekend --preparing for the 2nd round of 3F8-- And then hopefully home by the 15th!

TOMORROW is the last day of RT!! We are very excited--- it will not be an easy day due to the surgery for the mediport but at least we have radiation behind us for now! We met with the doctor today and she said everything looked good-- and she didn't see a need to see us again unless it was in the cafeteria or the elevator!! That was a nice thing to hear-- I wish all the doctors would say that TODAY!!

We will have to be at the hospital tomorrow morning at 6:45---- And he will have his surgery after his RT-- they will wake him up from anesthesia and then do it again around 9--- he is suppose to be the 2nd case in the OR-- We will see... we all know the clock works differently here!!

Got to go watch reality TV--- thanks for all the tips on Survivor--- I need help keeping track!!!

Until tomorrow-
Amy

PS== Grier got to see the dog that won the 2007 Westminster Dog " Best in Show"-- He said Tucker would like a friend!! I laughed-- I have been there done that!!! Do not get any ideas Jeff!!! check this link out--- www.angelonaleash.org

I do not need a scooter.. I have an IV pole!

Grier did fine today as usual-- we had an addition to our schedule-- after the first round of RT (Radiation Therapy) we were told to go back to the PDH and WAIT to see the team from surgery!! Oh yeah-- he is having surgery on Friday!! We talked about the new medi-port he will get and the time line-- no major surprises except the surgery could take 2 hours-- for some reason I do not remember the first hickman taking that long--- And I was quickly reminded that I was not in a good state of mind last March 30th to remember those details!!

Our plan is to go to the hospital at 6:45 on Friday morning--- no worries there since I am now accustomed to waking at 5:33! Yes-- The noise happens every morning! Then he will check in with the team and then head down for RT--- HOPEFULLY they will work it out so he can stay asleep and head up to the OR right after RT!! Otherwise .. they will do the quick wake up we have been doing and then we will wait until 9-- to go to the OR-- he will then recover in the PACU!! Susan can you believe it?--- we actually will recover in a room!! After that they will send him upstairs to the PDH to be checked again-- and if all goes well sent back to the RONALD!! It will be a long day to say the least--

Tomorrow is the last day of double sedation-- so it is something to look forward to!!

Thanks again for the notes and pictures--- And the shirt with his name on it from Alphabet Soup!! Thanks Dianna!!! You know I am in withdrawal from shopping!! I am told it is a southern thing to have things monogrammed-- OH well-- I guess he sticks out in NY!!!!

Check out the picture-- that was taken this am at 7:00am!!! He likes to ride the IV pole from the PDH to RT---Can't wait till we ride a scooter at home instead!!!

I forgot to add --- Betty and Mary Ellen-- Jeff has bracelets!!! Tell me what you need and we can get them to ya!! And if anyone else needs one too--- just let me know!

CHECK THIS OUT FOR LCH (Levine Children's Hospital)-- Grier played this at MSKCC and when I went online to see how to donate one in honor of someone... I found out there was a contest and LCH was listed as the NC hospital-- Vote for LCH to get a game system-- they are fun for the kids!! You can Vote once a day!

www.colgate.com/showthelove


Colgate-Palmolive and Starlight have teamed up again this year to help seriously ill children and their families cope with the pain, fear and isolation of illness. The outpouring of support from 2007 Colgate-Palmolive and Starlight national online Fun Center voting contest was wonderful and resulted in an overwhelming success, with more than 2 million votes cast. This year, Colgate-Palmolive is awarding all 30 participating hospitals a Starlight Fun Center – a mobile entertainment unit that kids can enjoy at their bedside or anywhere in a hospital setting.

And now you can make an even bigger difference. The ten hospitals that receive the most online votes will receive two Starlight Fun Centers, generously sponsored by Colgate-Palmolive. That's double the amount of fun and laughter.

Go www.colgate.com/showthelove to click on a hospital and place your vote. One hospital in each state listed will receive a Fun Center.

Super Tuesday, Fat Tuesday, Giants Parade...

Today was the same as the past days--- I will spare the time details with you-- They were the same! Grier did well during both treatments-- and took a nap today after the 2nd one @ 1:30--

We watched the NY Giants Parade on TV-- thought about going but could not see how we would get back to the hospital in time!! Grier and my mom had their own parade for Mardi Gras in the room-- throwing beads to each other--- And we have been stopped by every one campaigning for their candidate while we were walking all day today!

We finished the day with checking the mail!!! Thanks to everyone-- I would love to write everyone a thank you but I no I can not do that right now-- So... I will write in this blog as a thank you to you all!! We also went to dinner-- at Southern Hospitality ( Justin Timberlake's resturant??)--- Grier wanted corn on the cob-- so I looked at menus and thought this would be the place-- well... we got there and they have a new menu and took it off and added creamed corn--- HE loved it-- He shared with my mom and I and kept saying "This is a great dinner!" So, we were so glad he had a good dinner--

We are done with 9--- and have 5 more to go!! I guess we will find out tomorrow when he will have surgery to put the new port in-- We also start shots tomorrow AGAIN!!! The only good thing is that he will get them under anesthesia by the nurse for the next 3 days! Then I will take over on Saturday-- Today marks one week here-- It has been a long week-- I hope the next few weeks go by faster!

We made it through another day-- and YES-- we are half way done with these radiation treatments!!
This afternoon was hard-- we went back to the clinic at 1:45-- like they said.... and were told to wait at least 20 minutes to be"hooked" up to an IV pole-- Well-- by 2:15 we walked back to the room to see if they were ready--- and we still had to wait-- Our procedure was scheduled for 2:30-- So I had a feeling we were not going to make that time-- and we didn't-- we started around 3:15 and left the hospital around 4:00-- he ate a Nutra Grain bar in a groggy state as we headed to his requested spot--- for Breakfast, lunch, and dinner!! Johnny Rockets!! He ate a little and danced in the booth to the songs he was playing on the "juice box"!! He was funny tonight when Jeff asked what he has for dinner while talking to him on the phone... he said.. wait... I did not have dinner!! I said yes we did we went to Johnny Rockets and he said ..no.. that was lunch!! We are way off our schedule-- can u tell?
Tomorrow will be the same-- he is already negotiating about when and what he can eat-- Try explaining to a savvy 3 year old--- no.. you can eat after the second dose of the white medicine ( which is 6 hours apart from each other) .--- And he has no concept of time!! FUN!!!

Thanks for all the cards, gifts, ecards.... they are great!!! Please remember small is best!!! Everyone is so thoughtful-- I love reading the cards--- and hearing from folks I have not been able to see in a long time--- I have had a few questions about mail being returned to them--- RMDH does not save mail-- even for a few days--- so they return to sender when we check out-- Crazy but true--- We are hoping to check out this time by the 15th or 16th--- but it could be as late as the 18th!!

Here is a quick recap of the weekend----
Saturday we woke up after a long night with broken sleep--- Grier even woke up at 6:30am-- Every other day I was waking him up to leave for the PDH around that time!!! He almost fell out of the "magic bed" but was saved in the nick of time!! We ended up walking to the zoo and then walking around central park--- then came back to the ronald late that afternoon-- LOTS of walking!!
Sunday was much of the same--- there is a LOUD grumble in the walls EVERY morning at 5:33am!!! Who knows what it is??? I have only heard it in this fine room ... 807-- It woke Grier up and he asked what that noise was??? Then he could not go back to sleep--!! We finally got up and going late morning-- headed to Lenny's for a bagel and then went to Times Square-- While walking we hunted for a NY Giants shirt for the boys---YOU would not believe how hard that was to find-- we finally made it to Toys R Us-- to buy a basketball goal for the door--!!! Then we headed back towards the Ronald-- but had a detour after a tip on Giants gear-- Still no luck so we headed home-- we were starving and Grier did not want to eat ---just wanted to go play with his toy!!!
We watched the game--- Grier fell asleep!!! And after the game was over we got to hear ALL of NY rejoice in the streets!!! It was entertaining!!! Go Blue!!!
We woke up this morning after another night of broken sleep-- Grier almost fell out of bed again--- !!! We got to the PDH at 7-- and got back at 9:20--after a brisk walk in the rain and SNOW--- It all went fine except he woke up from anesthesia really bad!!! He screamed and cried for an hour and nothing could make him happy!!! He just wanted a Nutra Grain bar!!! He finally settled down and packed a Nutra Grain bar in his stroller so he can eat it after the second time (2:30) he gets his WHITE medicine!!! So... here we sit waiting for the clock to get to 1:30 so we can head back to the PDH and get on with this day!!!!

5 down 9 more to go!!!

Today was the same as yesterday-- all went well!!! Except the weather-- It has been raining here and very windy!!! I heard that was the case in CLT too!!! Rain is fine unless you have to walk 6 blocks each way to the hospital!!!

Thanks for all the messages -- it gives me something to read while I am here!! Also-- Thanks to my Louisana family--- for the KING CAKE-- I had no idea what that was until I read the piece of paper--- Grier said it tasted like a cinnamin roll!! It was yummy and we plan to share some with our LA friends across the hall! I have a picture of him wearing his mardi gras beads- I will post that later--

I am glad we have two days off from the hospital routine--- and the weather is going to improve so we can get out and walk around !!

Go NY Giants--- I guess we are fans now-- !!!!!! When in Rome do as the Romans... right??

We made it through another day--- We left the RMDH at 6:45am!!! That is early for us :)
Good thing we are in a loud room because the alarm clock did not go off!!! I woke up to the sounds of NYC @5:30am!

Grier did great with his procedures-- 1 @ 7:45 and then another @ 1:45-- He was funny after the first round-- we came back and he kept asking for just 1 goldfish cracker!!! Finally we decided he could bring the whole bag with him so he could eat them when he was done with the 1:45 session!!! And guess what-- he slept until 4:00! I am also fasting until he can eat so I was ready for lunch and he was sacked out in the stroller!! I went to Lenny's and got us both a sandwich and he decided it smelled bad when he woke up!!! OH-- Grier the food critic!

Tomorrow will be much of the same-- I do hope he sleeps better tonight-- he was very restless and gagging a bit--- I asked them about it today and they said it was probably not the radiation yet-- The Dr. said it could have been just one of those nights he could not sleep--- Great!

We went to the mail box today-- and opened it up and he started singing... "we just got a letter" from Blues Clues-- it was funny!

We did the HAMA tests today-- it is just drawing a vial of blood-- we will know the results by Tuesday afternoon--

Grier told the nurses that the Giants are going to win the Superbowl-- I did not even know he knew they were playing!!! He also told her he was really good at golf and baseball! He is very talkative with them as he walks into the room --- he pushes the white medicine--- gets "dizzy" as he says and comes out of it OK-- Whew-- It could be a lot worse!

1 down--- 13 to go!!!

OK-- I promise I will not count down each radiation treatment--- but we do have 1 done-- and 13 more sessions to go!!!
We were up early this morning--- our ronald room is street side so you hear everything going on -- You can only imagine!!! Grier had an apple juice and then we just waited around until 11:00 -- I think not eating after midnight every day will be a challenge-- It usually takes him about 10 times asking for something to finally understand--- you can eat after we are done at the clinic!!!

We met with Ursula-- we actually love to see her-- She is the nurse practitioner of the NB team-- She cleared him for anesthesia and then we moved to the next room-- We found out that Grier will have his Hickman (double lumen port) removed next Friday-- They will replace it with a mediport-- it will be under the skin and when he is not accessed he will be able to take a bath-- swim etc!!! There will be no tubes hanging down from the outside of his body!! It is a surgery to do all this but I am kind of excited-- we will not have to do dressing changes at home, flushing lines etc.-- He seemed to do fine with his radiation set-up today-- We will see if we see any side effects the closer we get to the end of the treatment-

Tomorrow-- We have to be at the clinic at 7am!! He will have some blood drawn to do a HAMA test-- This will tell us if he is OK to continue with 3F8 the week of the 11th-- We do not want a high number because he will not be able to continue 3f8 until the HAMA goes away! After that we will head down for the radiation treatment w/sedation-- it should take about 10-15 minutes and then we wait until 1:00 to do it all again---After the second treatment he can eat--

I am sure I have confused everyone--- Oh well-- it is a crazy schedule for the next 10 days!! Grier is very confused-- today at 3:30 we went to get lunch and he kept telling me he had not had breakfast-- well-- he was right!! Breakfast will be out of the picture until the 9th!!

Grier and I are here by ourselves right now--- My mom will come this weekend and stay until the 9th-- Then Jeff will come and stay with us until the 15th or 16th-

We are here-- FINALLY!!! Our flight time was changed at least 3 more times after I made the last post-- the last time they said was 5:30-- so we had to be at the hanger at 4:30-- not too much time to get ready and say good-bye to H &G-- But we made it to the hanger on time! We ended up not leaving Charlotte until 7 anyway!!! AHHH!!!! After many calls to the car service to change the time he was to pick us up--- he finally got mad!!! But he said he would wait since the car was already dead aka "out of service" for 5 hours!! When we arrived in Teeterboro--- a stretch limo was waiting-- It was something out of pimp my ride!!

It is 10:30-- and Grier is eating dinner-- and I am ready to call it a day!!!!!!!! We are back in the tiny room at the Ronald-- same one we were in before Christmas!!! I may have t0 see if we can get moved tomorrow---

Grier is ready--- I am getting there!

Grier keeps asking... Is time to go to NY yet??? AHH!! I keep telling him we will go when it is dark outside---we were suppose to leave at 8:30pm but just got a call from the Corporate Angels??? and they said our flight has been moved up-- whew-- I thought they were going to tell me it was cancelled! We are leaving at 7:00--- and should arrive in Teeterboro around 8:30- We will be at the Ronald late tonight--

We are going on the plane with another NB family--- Isabella and her mom--- Isabella and Grier are around the same age---

I will update later tonight--

Is it Sunday already??

The last few days have flown by--- Grier is doing very well at home!! He likes to play in the yard, hitting baseballs and driving his truck- We all went to Grace's basketball game-- which was fun-- it is hard to believe that going places as a party of five is not the norm at our house anymore--!! Sometimes I even catch myself at a restaurant counting!! Also, he has discovered he has hair coming in!!! You should have seen him go to the mirror and look at the black shadow on his head! He said that was cool!

We do have a plan right now--- Grier and I will leave around 7:30 on Tuesday night to fly back to NYC-- We are scheduled on Corporate Angels-- That used to not make me as nervous-- but now that we have had flights cancelled a few times- it actually stresses me out!!! OK-- I admit it!! I do get stressed thinking about all this-- We will get to NY late Tuesday night and go to clinic and get cleared for anesthesia on Wednesday morning sometime-- He will have his radiation set-up after that and be done with the first round-- Thursday through the following Friday will be twice a day-- 7:30 am and then again around 1:30-- Then we will have the weekend off and start 3F8 again on the 11th!! Probably home around the 16th-- if everything goes like it is suppose to-- :)


We have been busy but have had time to slow down too-- Jeff and I had a great low-key night with Katherine and Andy-- And I am going to a movie with some friends today--

***On a side note
I read something the other day and I wanted to adapt it to our life-- So many people tell me they do not know how we are doing this-- and I just say there is no choice-- You drop everything and just do it-- I’ll admit…sometimes this is tough. There, I said it. OK…I’ll add to it…sometimes it’s really tough. The stress of trying to act normal in front of your child in a completely abnormal world; the stress of waiting for test results; the stress of keeping up with work and a house so many miles away; the stress of not letting anything fall through the cracks from grocery shopping to bill paying; the stress of watching your child writhe in pain during antibody treatment even though you know that treatment is helping him; the stress of having to hold him down to get a painful injection; the stress of hearing about other children who are not doing well; the stress of not feeling like you’re doing enough, fast enough to help find a cure; the stress of trying to let things just roll down your back and not let them get to you; the stress of answering questions all the time about NB trying to not let Grier, Hayes, or Grace overhear something out of context! And of course all these things do not just apply to us but to any family dealing with cancer with their children-- We are very lucky to have a great support group that has given us what we need to get through this day by day!

We made it! .. sign from Myers Park Traditional

Grier. Maggie, and I made it home!! We got to the airport around 7:30am-- went through security and made it to our gate by 8:00-- Our flight was not until 10:05 so we just waited! We did fly "stand-by" so a big thanks goes to Nancy ( USAir friend of my mom's) for sharing a few buddy passes!!
Grier and I picked up Hayes and Grace at ETES and life has been a bit normal since then!
We are planning on having a few low key days-- since we need to return on Tuesday!
Thanks for all the cards and small gifts you sent to him-- Grace Baptist & Covenant Kids made some neat cards for him! And a preschool class from Norfolk sent a picture of their class on a tractor!!! All of the cards and postcards were fun to read!! I had a fun time with the music cards!! Everyone is so kind to think of him!