The Balancing Act~

I know, I know.... I have been quiet lately .... !  I am trying to balance this crazy life we live~ with some normal life... but I am about ready to throw in the towel! Really...crazy is the way it is going to be the rest of our lives...... living in the moment and making decisions on the fly.... all things I do not like as the self-proclaimed planner that I am ---- but I need to change or I am going to go crazy... Neuroblastoma is the leader in the house right now.... uggh! As much as I hate that word... I can not fight it anymore.... it is here to stay so I need to learn how to live with it because it is NOT going away~ 
Some of you might be thinking something has gotten worse.... no, I don't think so... we will not scan for a few weeks... then we will see where we are in the fight.  

Grier and Mrs. Nickell at the WDS celebrating his summer 6th birthday at school -

Grier and his "rat fink"--- 

Grier had a nice low key 6th Birthday after his day long of transfusions.  He got the bike he wanted since before Christmas.  And has gone on rides around the lake a few times.... He has not had a "party" yet..... but it will happen as soon as I can figure out a time to do it.... :) Good thing he celebrated his birthday at school before relapse..... :) We also had a family party and he had his dinner requests... grilled chicken and guacamole!.... hmm~ he still has some weird requests even this far out from chemo.  He has started coming out of "HOUSE ARREST"--- his counts are OK--- not great so we have gone to a few places.... he loved going to Grace's 3v3 game.... and of course has made a trip to the mall.... thanks so much for all the cards and presents for his birthday.  He has really enjoyed shopping with his $$$$---- 


He went to the clinic on Monday to have counts checked to see if he was ready to start round 2 of chemo.... it is going to be some different poisons this time... NOT ICE!  His counts came back and his platelets were low... not so low that he needed a transfusion but he could not start a round of high dose chemo.  After those results came ~ the discussion of our annual beach trip came up... We have gone to Topsail the same week for the last 6 years~ yes, sometimes with LOTS of medical supplies in tow and last year with NONE. I was not worried about the medicine that would need to be given while away.. but I was worried about a fever due to low counts and possible transfusions... not the best way to spend a vacation.....Since we are waiting a week to start chemo after we get back -- we do not have to worry so much about those things... and he is feeling really well right now... a great sight to see after the last month of ICE-  So, after talking with NYC and CLT it was decided that we will go as planned and come back and start more chemo.... as well as scan to see where we are in the fight.  Today we went back to the clinic for Grier to have counts checked again and to have blood sent to NYC to check his HAMA level..... one thought is to enroll him in a new study called NK ( Natural Killer) trial.... not sure all the information yet but I think they combine 3F8 with a blood infusion from me or Jeff--- I will have to read about it while I am at the beach.... I have also asked them to send a sample of the original tumor to CHOP for ALK testing.... more info to come on that too--- trying to get the options open since there is no road map for relapsed NB...  I will be doing lots of reading so I can ask lots of questions about the next steps we need to take.


We are all looking forward to spending time at the beach with family and friends.... it is a HUGE break from reality.... and what we all need right now....  

            
Grier has adjusted very well to his shaved head.... I am at the point I want him to wear a hat to avoid all the stares.... but he says it is too hot and he does not get bothered by the looks!!!  His activity level is great... lots of energy... riding his new bike and scooter and playing some world cup soccer in the front yard.  
He has had lots of visitors.... he even had a special visit from the High Point University Baseball coach.... and has not taken the hat off since that day... He is very excited that he has Micheal's #24 uniform-- it is a little big for him.... so he want to hang it in his room...

Hayes and Grace ended a nice school year with awesome grades.... We are very proud of them....  this year has been crazy year since the first day of school-- literally!  They came through it with all A's---for Hayes and A's and B's for Grace---- Hayes turned 13 on Saturday and left for the beach for a week with his friend, Henry and family--- He seems to be having a great time fishing and being at the beach with The Shimps.  Baseball will start back up for him when we get back from the beach.... but for now he is just being 13--

I hope you enjoy the pictures of Grier from his past birthdays since we started this journey..... I did... The above picture is June 2007--- He was very much into the WONDER PETS... and had just finished 4 rounds of chemo.... 

Grier celebrating his 4th birthday-- in Mrs. Leary's class..... 

Grier's super hero party to celebrate being 5 at the Charlotte Jr. Gym....

Grier's school party to celebrate his 5th birthday with friends in Mrs. Thompson's class-

The famous "Boston creme pie" cake he wanted for his 5th birthday... but really he just wanted a red sox cake..... 

Grier and his Arizona Diamondbacks cake for his 6th Birthday!

That is it for now.... I need to pack... ( a skill I have gotten very good at!!) More to come next week as we relax--- Thanks for all the birthday wishes for the boys... We are going to celebrate again at the beach.... Grier did make a wish when he blew out his candles on his baseball cake.... and it was "I wished I could play baseball again."-- 

The final bit of exciting news at our house is that Grier announced this morning that he has two loose teeth..... very exciting but I am going to call the clinic to see what I should expect with low platelets.... never a "normal" moment...  HA!

"The LONGEST DAY EVER"--- Grier

I really wish I said I told you so a few times today at the clinic or pushed harder last Friday for a blood transfusion since he was borderline..... maybe today would have turned out differently....

Today was one big "cluster ____" I said that ... Grier says it was the longest DAY ever.....  After you read the abbreviated version you can decide....  Grier had an appointment at 11:30 today... I thought it was a little late in the day to do counts and possibly need blood so they said we could come in earlier JUST IN CASE he needed blood products.... I didn't think there was a chance that he would not since he did almost nothing all weekend ... not much energy at all.... and this morning his leg had a bruise on it from the shot I gave him last night... Since I am a Jr. Oncologist I knew we would be getting both today... We got to the clinic by 10--- waited longer than usual and then had to wait for counts... they came back and were horrible-- platelets were 16-- Hemoglobin was 7.2 and WBC was .6--- I was really hoping to be able to stop the IV antibiotic I was giving him 3 times a day.... but not a chance with no immune system.... They ordered platelets and blood from the blood bank... and Grier and I went downstairs for a quick lunch... We came right back up and took a spot in the over crowded infusion room and got started right away... Platelets ran for an hour and then we had to do the antibiotic that we have been doing at home for 30 minutes... 2 :00pm came and went and we were just hanging out waiting for the blood to come up... 3:00 we were asked if we wanted to come back tomorrow to do it since it was going to take 4 hours.... I said NO... it is his birthday and the last place I want to bring him is the hospital for his birthday.  They explained to me that the clinic closed at 5pm.... I think they could see the shock on my face.... because I said what if we are not done?--- They said we would have to walk over to the hospital to finish getting blood in the day hospital--- OK... we have done that before.... but I had to ask why no one stayed until the last patient finished??? yea.... no answer besides-- they used to do that... so we started blood @ 3:30 right after he was accessed again for the 5th week in a row!  At 4:30 we packed up and Grier rode in the wheel chair over the crosswalk to Levine.... we got there and they put us in a room... and I said ..WHAT about the infusion area??? And I was told -no staff was there to staff it so we were in an observation room to finish.... that was fine... it was quiet and we had a nice nurse..... Grier was awesome as usual during this whole day process.... he was counting the numbers on the pump... as soon as it got to 240 we could go home..... :)  Right before it was time to go home the girl from registration came in.... and I said.. We are just here to finish an  infusion because the clinic had to close before we finished.... she said NO--- you are here for a less than 24 hour stay... and I said yes.. less than 2 hour stay..and I was getting aggravated at these stupid procedures... long story but I had just paid a $50 copay for a doctor's visit that was basically a listen to your heart visit... and I asked him if he could take the appetite stimulant again... he thought that would be a good idea... OH good-- I am glad I brought it up since Grier weighs 35#s!  We were just going to the day hospital to finish the transfusion.... not to be admitted--- so now I get to be on the phone with billing and BC/BS to see what we were suppose to pay for.... ha!ha!

We finally made it home at 7:10 pm---- so thankful dinner was here.... :) Thanks Laurie... I let Grier open a present early... he was really excited about his new orange scooter.... I knew since he had been just juiced up that he might enjoy it for a few seconds tonight....

Some of you got to see my facebook comments.... I was getting more and more sarcastic by the minute.... it was a good thing my phone died before the day was over because who knows what I would have said..... I do know that I need an emergency charger in my purse at all times... because the itouch and my phone did not survive the whole day.... I honestly had no idea we would be there that long.

The infusion room is an interesting place... 6 beds-- 6 TV's blaring on different channels ranging from PBS.. Dr. Phil.. to JERRY SPRINGER??? It took all I had not to ask the teen beside me to cut that CRAP down.... I could barely hear Grier talk to me ... And then add in the parking issues... I had parked at the building where the clinic is ... MCP and when we had to walk over to the Hospital it makes for a logistical nightmare especially since I had them park my car and they close at 5:30--- so again I had to leave Grier while he was getting a blood transfusion to move my car to another parking lot that I could get to easier by the time he was discharged.... I actually tried to valet my car at LCHLCH --- got my ID and went back to Grier on the 5th--- CRAZY!!!! I wish that the people that made those neon light and stars and awesome decor of the new hospital also thought out the logistics of having a "frequent flier" patient --- especially the population that uses the hospital as much as oncology kids....

ok--- off to give another shot of neupogen... and then some IV meds.... sorry if I offended anyone but really this is a brief description of my day and it should not have to be this hard...

HOME!

WE had a busy Friday..... our morning started out like the rest of the week... swapping spots and sending me on a chick fil a run... On my way I ran into our doctor in the other building and he asked when we were going home??? I said I am not sure yet... he said everything is set for today... so it should be soon...  I asked him a few more questions while we stood in the hall... we talked about what to do next... and again we both thought ICE would be too rough again... especially since he had the strep pnuemacoccal? infection... and he was concerned another round would do damage to his kidneys...  He was going to email Dr. K in NYC and share those concerns.... He mentioned several times how bad the infection could have been ---agh... it is hard to balance the benefits of this high dose chemo with the risks .... CRAZY!  Not only does chemo kill those NB cells but it causes so may other side effects... and just this week I have heard about  couple of friends who are still clean from NB but now having to deal with early signs of AML (leukemia) that was caused by chemo...  This was Grier's 10th round of high dose chemo....

After I got back to the room with breakfast the doc made his rounds and said we were going home... nothing really had changed.. still .4 WBC and 0 ANC--- and blood was borderline for transfusion... he wanted to see if it would come up on its own since we were 21 days out from chemo... REALLY????? WOW... 21 days.... I think we spent 3 nights at home.... the rest was in room 1--  He said we would be out by 11 because our KIDS PATH nurse would be at our house by 2 to show me how to continue to give the IV meds....  I thought that was a bit ambitious but started packing up--- I was hoping to stay until mid-afternoon since I was suppose to eat lunch with Grace at school... and do registration for soccer.  Jeff came up to the hospital and I raced over to meet Grace... before I was even there... Jeff called to say they were leaving....

I got home and Grier had assumed his couch position.... I had to remind him he was not attached to anything... like an IV or a backpack...  he is still pretty tired....

I had lots of help this afternoon... Thanks Ross and MacLean --- I was able to get everything done and even go to the grocery store.... there  was NO TP in the house.... :)

Grier is pretty much house bound this weekend... still has no immune system --- the rest of us have a full schedule.... On Monday, he has to go back to the clinic to check counts and see where we are.... we will possibly start another round of chemo the following week... it all depends--

I have had to write notes since I have not been responsible for any medicines in a long time... and I get busy and forget.... so hopefully by tomorrow I will have the routine down again... I will be so happy to get him de-accessed ..... so he can shower... and that will also mean the IV meds every eight hours are done....  Hopefully that will happen Monday at the clinic---

Day 9

I can not believe it has been nine days already.... time flies when you are having fun and when you are not!

Grier's counts are slowly moving.... at the beginniing of the week  his WBC was .2.... then .3... then .4 and today we are back to .3--- yes totally normal--- so we sit and wait for the neutrifils to do their job.... with the help of the neupogen shot everyday!  He had another platelet transfusion yesterday and I think he will need blood by tomorrow or over the weekend.... he is around 8--

He is no longer on TPN-- and is ONLY eating chick fil a nuggets.... and an occasional milkshake.  His new rountine in the morning is to get up... and swap beds with me... and then he wants me to go to Chick Fil A and get him breakfast.... So I walk to the other building while he watches TV --- 3 years ago he would not let you leave the room... now he is sending me for breakfast in another buliding!!...  His weight is going up and down just like his counts.... but I know when we get home he will do better about expanding his diet....  things must taste bad... because things he normally would eat he will not even try at this point.


Grier's birthday is in 5 days... I told them to stop writing the date on our dry erase board.....  I hope we are out of here by Tuesday but if not the 8th will be anyday I say it is... :)  We will just have to have Hayes and Grace go along with the "calendar change"---- 3 years ago he was turning 3 and he had just been discharged from a week of chemo and here we are again turning six doing the same thing.... ugh... sure wish there was a better answer for this madness.... I know there is not a cure.. especially for relapsed Neuroblastoma but I am hoping there will be something soon to keep these kids clean and stable---

Thanks for all the visits, cards, well wishes and meals.... it has made the week fly by... This weekend will be super busy .... and next week.... I can not believe school will be out on Thursday.  I guess I better work on some summer plans.... or should I say flexible summer plans since I do not have much control of the calendar these days....

Tuesday June1st--

All day I thought it was Monday..... Grier has been about the same today... actually the doctor was pleased that he was sitting up eating chic fil a nuggets and playing this morning.  He said hopefully by the end of the week we could go home to finish the antibiotic by IV--- His positive blood culture was real... and actually a bad one to have so we need to make sure it is cleared up--- I don't remember the full name but it was strep....?  --

Today was full of visitors, card games... and a surprise from Jimmie Johnson.... Grier took a nap this afternoon-- I bet he needs blood tomorrow or the next day...  The hair is falling out ... and the lint brush has been our best friend today... He has a little Mohawk now.... I have been doing the "whistle" to make him smile and telling him I cant wait to kiss his bald head... not sure he is so excited but I am trying.

We are both heading to bed--- last night's storm kept him up... and I could not sleep very well--- imagine that.... the constant beeping and people in and out is not good for this light sleeper...  I actually just told the nurse NOT to come in tonight to do vitals... please do it now and in the morning..... we have got to get some rest.... now if only I could figure out a way to dim the neon lights outside.... it looks cool at night  from the outside but not from inside....

Hoping tomorrow  is the same or better.....

Real Quick.... Grier had a pretty good day... actually asked for Chic fil a nuggets.... and he wanted 8--- I laughed out loud... oops.. but since he had only had a crumb I was thought he was trying to be funny.... He ate 2--- not bad... had a bite of mashed potatoes and several drinks... including "shaska" -- he told me it tastes like root beer... not coke... ( it says COLA!!!)

He played lots of go-fish... and his hot wheels game --

The only bad part was accessing the port... i know  it is sore because this is the 4th week in a row it has been accessed.... -- it took two attempts which is traumatic..... then after it was done it was time for the shot to increase his White Blood count.... He likes me to give that now even if we are in the hospital... I asked for a smaller needle because the last two days the needle seemed bigger than what I was used to--- so our nurse made that happen....

Other than the normal ... today has been the same.  He has only gotten sick one time... and his hair is falling out quickly,,,, he said his head hurts.... it must be tender...  He seems ok with it right now.. I actually asked Hayes if he wanted to shave his head too.... Grier thought that was a cool idea.... Hayes not so much... then I said .. Do you want me to shave my head... and he said NO-- whew.... not sure what I would have done if he said yes.... I guess gone to see Tonya.... :) It is just hair....


A week from tomorrow he will turn six... I hope we are not in the hospital..... I also want him to feel great so he can enjoy his present that he has wanted for a long time..... no it is NOT a puppy ..... I am not that crazy!!!

Sunday..... Grier is doing about the same.... still not eating and only taking sips of "shasta"--- I can not even begin to try to spell it the way he says it.... it is funny... I really don't care what he drinks at this point... just something....

We added a baseball tournament into our crazy schedule this weekend... and it was fun to be outside and not confined to the hospital... with the help of Jeff and my mom.. Grier was well taken care of--- The hospital time I spent was kind of crazy--- trying to get medicine worked out... and doing things "my way"--- AND let me say I am not picky but I want things done on a timely manner.... We did have some issues this weekend with Grier's TPN-- it stopped working..basically clogged the tubing so it made the pump beep all the time... it happened on Thursday night too but our nurse worked with it and had it re-tubed at pharmacy--- this time it was "trashed"--- yes I was a little questionable about that decision because they did not replace it for about 18 hours... and the fact it is expensive... $1000 a bag!!!! So, I said jokingly .. did you deduct that from our bill??.... and it all kind of started... WHATEVER... I am so sick of tip toeing around nurses personalities.... I really thought they could bring up a new bag quicker... but that is not the case...

Grier was unhooked today while we waited for TPN to come up for the night so we took advantage and went to the 12 floor to be outside... he seemed to really enjoy being outside and laughed and smiled with Hayes and Grace as they pushed him around on a table w/wheels---- yes a little dangerous with low platelets.... but it was worth the moments I had to shut my eyes to see him look so happy.

Still no movement with counts-- so he is there until that happens and when he eats and drinks....

I was called a "bulldog" tonight... I guess they do not like being questioned about why things take so long and asked about medicine.... really??? I do not think I am ... but I am sure it is what I call "putting my NYC on"---- funny I have been told a few times this week by friends how they think I have changed.... YES -- probably true... I would find it hard NOT to change after living this life after 3 years.... I am just trying to balance normal life with chemo side effects.... I no longer just let them do anything... I ask lots of questions and now have lots of friends that have done this before me..... I am Grier's advocate.... no other words for it...not that I wasn't before... but I have seen how some things work for him and some don't and I don't care where we are LCH or MSKCC -- I am going to ask you to do it the way it works for him.


On a side note... Grier's hair started falling out today... he is a little bothered by it because he says it "hurts"--- his head may be tender...

Thanks for all the visitors this weekend.... and my new hat that says "cancer sucks"--- I actually was wearing my Life is Good hat and put a Cookies for Kids Cancer sticker over the Life is Good part.... not that life is not good... BUT it could be a lot better and yes a lot worse!...also thanks to Ed for coming to out my headboard together... and thanks for taking Hayes to the games.... and anything else I am forgetting..... THANKS!

A quick update--
Today we woke up very early... 7am -- I know some of you were off to school and work by then... but we did not get to bed until midnight.... so it was early for us.  Grier had a vomiting episode last night and spiked a fever.. so they gave him Tylenol and he could not keep it down.  After the second try it stayed down and he was fast asleep---

This morning he woke up thirsty and he took some sips of a capri sun and could not keep that down... I was getting a little worried because I thought that he was getting better.  We also found out that he needed a blood and platelet transfusion.  His platelets had dropped really low overnight.... from 33 to 8!!! When we started ICE they were almost 300.... anything less than 20 requires a transfusion.  His hemoglobin also was very low--- 7.2 so it also required a transfusion.... thank goodness for blood donors... they really do save lives!

Most of the day he was quiet and in and out of sleep... after his transfusion he looked like he was going to get up and play but it was a tease... he did play with his new car toy... and actually called a friend from school... We also had some great visitors ... and only once did he get sick while they were in the room... It seemed that every time he took a sip it was almost an immediate reaction to vomit... so he kept saying he did not want to drink.  I think I would be the same way after 13 days...

Yesterday I did ask them to put Grier on TPN-- it is Total Patient Nutrition.  He had lost almost 5 pounds ( he is at 35#).... and I did not see the end in sight... so he is hooked up to TPN and it supplies him with the calories he needs for the day... The plan is not to come home on this... I just thought it would be a good idea while he recovers from ICE.

By the afternoon the vomiting had picked up a little... and I had some NYC help ( Gretchen and one of the Nurse Practitioners)... I was back and forth talking to them about what we could try to give him some relief.... And after relaying messages... I am not sure LCH is comfortable with what MSKCC uses... I am still working on it... and I hope that if it continues they will talk to each other... Obviously we want what is the best for Grier... so at least we are on the same page ..!  The best news I heard from MSKCC was this delayed vomiting is probably related to ICE... and it could last 2 weeks after it was given.  It was suggested today by the doc here we could do an ultrasound to see what is going on... but now I feel like he is just that rare group that is more sensitive to carboplatin.... nasty stuff!!!

That is it--- Have a great Holiday Weekend.... not quite sure how we got to May... especially to Memorial Day... but summer is here... ugh :)  As much as I enjoy the change of pace summer brings... I miss school and the routine...

Thursday.... already back at LCH !

Thursday Night ..... Guess where we are?????? No-- not home but at Levine Children's Hospital~

You read the top line right.... Grier spiked a fever last night and we were admitted because he is nutrepenic.  (sigh) I knew we had an 80% chance of this happening and with our luck I was not surprised.  So we packed our bags last night at 11 and got here ready for the "drill" by 11:30--- Yes.. they asked me if we had any pets at home.... :)  I was a little more laid back because Grier did not have to be accessed -- he was getting IV fluids at home so we could eliminate that trauma... Grier has not felt great all week... yes, the vomiting has slowed to once or twice a day.. but he still has lots of fatigue and just is not himself.
We will be here until his counts show a trend in rising... that could be a long time... so I am not near ready to start a countdown.

I am going to back up..... Tuesday and Wednesday were busy.... we went to clinic on Tuesday and Grier was not happy.... so i am assuming he was feeling terrible that day too... We have be assigned a KIDS PATH nurse again.  She came out and drew his labs at our house on Wednesday.  This saved us from going to the clinic.  He really needed a break from going over to the hospital... so as easy as it is for us to drive a few minutes I decided she could come to our house to get his lab work.  We knew Wednesday after the counts came back from the lab that he was dropping.  His hemoglobin level was low and his platelets were dropping quickly.... as well as his white blood count.  The plan was to go to clinic on Friday and checks them again and most likely get the first of many blood and platelet transfusions--- I am sure that will happen tomorrow.. but we are here in the hospital so it will be no big deal....When we do both in the clinic it is an all day affair....

Back to today... Grier and I had a pretty restful night --- especially for being in the hospital.  We had our favorite night nurse ~ He has slept almost all day so it was pretty quiet... He did ask for a banana around 10... and after 5 calls still no banana... I was busy looking online for a Yankees "bucket" hat that I could give him when the hair is gone.  I also was looking for PJ pants... or LOUNGE pants... since we have gone through a few a day.... And thanks to Facebook... we are set... I asked for suggestions of stores and three elves ( Karen, Lesa, and Susan) went to work shopping for pants... and let me tell you it is not easy ...... Lesa and Susan brought the cute PJ's --- and we had a nice visit while Grier slept.  Susan got the banana we had been waiting all day for.... and when Grier woke up he took the tiniest bite.... but I think she learned her way around LCH while she was searching for a banana.

This is just a small description of my week so far.... does not include any activities that Hayes and Grace have had... plus the fact that I just don't get to focus on much they do anymore.  Sucks... I wish I had some of the days back where I could eat lunch at school and be more involved... but I am totally focused right now in Grier's 3rd fight.  The best thing that I did after relapse in August was to find help with Hayes and Grace--- It allowed me to focus while I was away so much ( almost 3 months) because I knew they had a consistent routine thanks to Haley filling in for me--- Now we have MacLean... she is filling in so i am not trying to do everything and totally wearing myself ---It only took me 3 years to figure this out..... :)

ICE has kicked G's butt-- I am hoping it is doing the same to Neurblastoma cells.... I knew this would be the case but obviously forgot about those early days of chemo.... I have not put any pictures up lately but I will try to soon.  I know our days are numbered with his hair this time... and I am hopping he does OK with it.  We also had one unexpected thing happen today.... and that is a positive blood culture.  We are hoping it was a contaminate and not a true line infection but only time will tell and repeat cultures. He is being treated with two strong antibiotics just in case because he does not have an immune system right now.... This is not something we want so hopefully we will know soon if it is a line infection or not.  I think that is enough for tonight... I know some of you are waiting on me to respond to emails..... I am working on them :)---- this week quickly went from bad to worse.... Thanks for all the help today .... and for the meals...

oops---- THURSDAY was a long time ago.....

I guess those that have read this blog for a long time know that I do not update when everything is going well.... or if I am too busy.... this time the reason was that I was too busy.  I was very thankful for adrenaline this weekend.... because that is what I was surviving on....Grier has been feeling pretty lousy and the vomiting increased to almost every 30 minutes early Friday morning (12:30am)...  and it continued all day Friday and into Saturday.  We tried almost everything we could try and nothing was giving him a break.  He was worn out... and so was I.   Friday night was "family night" -- not really but we were all up at LCH hanging in Grier's room while he was in and out of sleep... Jeff stayed and I came home to sleep a little...
Saturday was much of the same.  He slept a lot and still had vomiting episodes.... I had planned to help at the Cookies For Kids Cancer "little" bake sale at the ALL-Star race at the Charlotte Motor Speedway... even though I was dead tired I went and had fun with the small crew that we had at the race.... Tons of race face heard me tell them that pediatric cancer needs more funding... and thank them for their donation to the bake sale... It was the break ( not really a break ) that I needed from the hospital but it still left me feeling like I was doing something to help, Grier and other kids.  There was nothing I could do at the hospital except watch Grier sleep.... I have some funny stories about me and my lack of knowledge about race car drivers... but I will spare you.... just put it this way.... I know who #3 is and I will never forget!  This Bake Sale was a "dry-run" for the BIG sale on Sunday.

Sunday was super busy... I knew it was going to be... even before relapse... because of the Cookies For Kids Cancer Bake Sale at Taylor's Finish Line Festival...  Busy was an understatement... but again I was glad to be out there trying to make a change.  Grace and I were helping for most of the day... She had a great time.  We had to leave mid-afternoon because a couple of weeks ago we found out Grace was getting an award at the Charlotte United Soccer Club banquet.  So, we raced home .. changed from Cookies attire to banquet attire... Grace had a great time with her team and coach, who by the way won Girls Coach of the year.... Grace won the "CUFC spirit award"---

Grier remains the same for the most part... he is quiet.... not feeling great and not playing.  His vomiting has slowed down a little.  He was finally discharged from CMC on Sunday morning.  I had requested a backpack of fluids  because I did not want to worry about him drinking.... he has not had anything but sips since Wednesday.... and nothing to eat.  We ended up getting the fluids delivered to our house and they added a medication to hook up to his IV every 3 1/2 hours... He slept most of Sunday... still not talking----  Sunday night I was exhausted--- so much so I was wishing we were at LCH... not because I can sleep there but just because I can emotionally take care of Grier and not have to mentally do the medications too--

Today we had an early clinic visit.... Grier was still not close to feeling well.... so they gave him more fluids.... more meds... and had to change his port... and re -access him... and give him the first shot to start increasing his white blood count.  What a day when you already feel bad...  We will have to go back in the morning to make sure his sodium and potassium levels are coming back to normal... we will also find out if he is without an immune system.  We think that will be the case.... because tomorrow is day 8 after ICE.....

We finally came home and Grier had a visit from Mrs. Nickell, one of his teachers.  And I got to see a smile that I have not seen in days... He also played the wii a little and flew his new helicopter.  This was a big day at our house.  Later in the afternoon he got sick again.... this chemo has really hit harder than I thought.

Thanks for all the meals... and rides and everything... Grier has lots of things to open but has not been in the mood to do it.  Also thanks to the orange sharks... the picture that you took at the T-ball game was great.  We have looked at it a lot.  And a huge thank you to our friends that came out to the bake sale to help....  also to Olivia and Sinclair.... your idea with the baseball T's is awesome ... Grier loves the Astros shirt... so I am not thinking that will be on the quilt.... but I know he will love each shirt that is on the quilt.

Thursday..... what can I say except it was a long and quiet day for the most part.  Since we are pretty active during the early morning hours with pee samples... and last night we added nausea and vomiting to the mix... the days are running together... He had a rough night last night.. the benadryl that seemed to help the other nights was not working.... and we were almost going to add another medicine... but around 3 he seemed to settle down and relax and sleep... until he was messed with again around 5a and he had one of those "night terror" episodes.... It was not very long and it must happen during the deepest part of his sleep... especially when they wake him to do blood pressure and make him go to the bathroom. He was back to sleep very quickly -- they came in again at 6 then shift change at 7... 7:30.... 7:45 someone else came in to see if he wanted breakfast... 8:00-- and you get my point... this morning was crazy -  He slept until 9 and woke up for a few minutes... and was back to sleep and basically slept all day.... He did wake up around 3 for about a half an hour but was not chatty and if you know Grier you know that is not the norm for him... I kept asking him questions and he said nothing..... finally he squeaked out ... When are we going home???? I said in a couple of days... pretty vague answer --- after that he was asleep and chemo infusion started for the day.

I had a few visitors today.... that was fun to chat a little.... the room has been awfully quiet.
I came home to get a shower... have dinner with H & G... and I am going to head back for the night...

Thanks for everything( gifts, cards, notes, everything).... every time I come home there is something new.... dinners have been very helpful since I do not have to think about it at all....which is good since I am a little sleep deprived and basically running on adrenaline.  Looking forward to tomorrow and hearing the beep at the end of the last infusion.... no this is not the end of chemo for him-- just this week.... I hope they will let us go home .... he has not eaten since Tuesday.... so it will be interesting what they say about leaving.... I know he will do better out of the LCH resort.... Saturday can not get here fast enough....

Day 3 of ICE

These last three days have felt like a month... I can not believe this time last week we were almost home from NYC----and now we are back in the same room we started in last week when he had the fever.  Yes~ we did have a room change today... not at my request but they said we had to move because the other room was an observation room.... So, late this afternoon we packed our stuff and moved to room 1-

Today started out a little slow.  Grier slept late again.  The nights wear him out... we have to wake him a few times to go to the bathroom and believe it or not he is getting so much post-chemo hydration that the sheets have to be changed too.  We were lucky to have the great nurse we had Monday again last night... she makes all those wake up calls as easy as she can for both of us.  She was so on top of everything that the pump did not even beep .... and that is HUGE in my book....

Grier has now finished 3 days of ICE--- actually today it was just the I & E--- it will be the same for the next 2 days.  He is getting sick late in the infusion --- benedryl through his IV works but it knocks him out so finding the right balance is what we are trying to do--- He has not eaten much if anything since Monday--- not even had much to drink.  One of the side effects from the caroplatin is that is makes things taste like metal... so I am sure that is an issue and the nausea.

He had more visitors today--- but I could not talk him into getting out of bed.  He kept asking how many more days until he could go home?? And he asked if today was a school day?

so... besides... napping, not eating, and wanting to get back to normal we are hanging in here up on the 11th floor--- trying to make this as normal for him... and apparently everyone thinks I make it look easy... but there is nothing easy about it....  I am missing being at home too--- it seems like forever...  I did go home and take a shower but it is not the same---

Got to go wake him up... time for a urine sample... and then I am going to bed... we are sharing the bed this  week... which is fine since I am sleeping with one hand on the pink puke bucket so I can help him if he gets sick in the night.

Last night went better than I expected.  We had a great nurse and she made waking up every few hours ok... Grier did great with being woken up and asked to go to the bathroom even if he was still asleep.
Other than not going to  bed until midnight it was alright.... I waited with the bucket for the first round of vomitting but was so happy when we saw the sun this morning and he had made it through night #1 without getting sick.
This morning he woke up around 8:30.... ordered some breakfast... bacon (of course).... and ate it.  Again I was so glad to se him doing so well.  We took a ride on the IV pole downstairs to get me some yogart... and another visit to the gift shop.  Flashes of Hope ( an organization that takes black and white photos) came to the hospital today to take some pictures.... I signed Grier up .... :) We walked to the room and he did his photo session... and then we came back...and bulit more planes... and watched Bolt.  He fell asleep while watching the movie which is unusual for him... so I knew he was starting to feel the effects of ICE.  He woke up after a long nap and had a visitor.. he was very happy to see Leila... Grace and MacLean came up to visit... and then Coach Melissa and Maggie... It was a full day.  He was hanging in there... not feeling great but trying hard to do what he wanted to do.... After everyone left he started getting sick.... and after 3 nausea meds it finally stopped and he is asleep.  Hopefully he will rest well tonight... but we still have to wake him up to pee every three hours...  So we have two days done... 8 hours total so far of chemo.... There are 3 days left... and the bad news is it will not be Friday when we get to go home. ~Because they started so late... and chemo has to run the same time each day... we will have to stay over Friday night.

Just a quick update to say Grier did start ICE today---- I think I was even wishing for a couple more days of normalcy... but after he was examined the doctor felt comfortable with starting.... and I know it is better to start than to wait around and let the little....( I won't say)-- have time to multiply!

We got to the hospital and had his urine tested and then waited.... I guess I should have been more on top of it than I was...because we waited too long again according to our doctor--- Let's just say HE WAS PISSED at pharmacy..... and I don't think we have heard the last of it--- I am glad... because he took care of it... and knows that there is NO EXCUSE for it--- The chemo he is getting is 3 different types... so total of 4 hours today.... should be done by 8pm---- with tests during the night.... we will have to see how tonight goes.... since we have not done this combo of poison before. Tomorrow will have to start at the same time.... so it sucks we have started so late.... makes a Friday discharge HARD!!!

Other than that little drama.... our day was quiet and fun..... did I just say that??? We hung out and did Legos.... and made foam airplanes..... rode the IV pole to the gift shop.... and watched some TV... My phone actually ran out of batteries by 2pm... so after Grier got his third dose of anti-nausea meds... we both slept a little... He handled the news of the pit-stop very well---- knows that we will go home on Friday... He is loving the "nurse call" button.... He has finally figured out Child Life.... He likes to call them for "something to do"-- I can imagine by the end of this week he may even walk down to their office.. who knows....

I am way behind on emails and FB..... I am sure I will have plenty of time to catch up tonight.... so if you have not heard from me.... sorry!  Grace and Hayes are covered this week--- thanks to all the offers.... there will be plenty more weeks to come.... Thanks for the dinners lately.... they have been very helpful....remember we are all not home so small portions are the best.... I have no storage space---

Thanks to my mom for taking Grace to the dentist for her emergency appointment..... yes... emergency... after another tooth extraction and a cavity filled she will be set to go----- I could not even go there today so I am glad she took her....

In a few hours the infusion will be done for day 1--- then we will have 4 more days... YES!! I am counting....

PIT STOP

I wanted to re-post this letter from my friend...we have several things in common and she knows this situation all too well because her son, Liam has been fighting NB for the same time as Grier.  I actually just read the post that everyone kept talking about.... I knew it would be fine because we share a lot of the same opinions about this fight.... want to read Liam's site... http://princeliamthebrave.blogspot.com  

I know everyone is slowly finding out about this "pit stop"-- that is what I am calling this relapse... and I don't want panic .... I know from experience that not everyone stills reads the blog so it may be a shock to some.... Please remember that it is not only Grier that is taking this pit stop in the race against Neuroblastoma but also Hayes and Grace---  I have been asked about visiting Grier at the hospital.... and I am fine with that... PLEASE call first to make sure our day is going ok..... I have done this enough to know some days are better than others.  Also if you have been sick... even a slight tickle in your throat that you think is allergies.... please send him an email or sign the caringbridge site instead of a personal visit....  If you come to visit... be prepared... I do not need "chair sitters"--- sorry if that offends people but it is full time entertainment in the hospital room... we do crafts and watch movies and hopefully we will get a wii to play in the room.... and if they will let us we will go outside on the greenway.... also no tears in the room... we make this like a vacation.... "a sleepover" is what we call it sometimes... and really anything goes....

There is a possibility that chemo will not start tomorrow... is may be delayed a few days because Grier has a cold... we will find out tomorrow at 8:00am --- if he does not start it will be life as usual-- school.. etc.  I will update as soon as I know-

ready to start the race again....
AVC

ps--- I guess the race lingo is appropriate since race week in coming up soon in Charlotte--- There will be a HUGE bake sale inside the Taylor's Finish Line Festival on Sunday the 23rd...... thanks to a wonderful group of volunteers.... 15,000 cookies were packaged and boxed for the sale--- plus we will have local bake goods from local folks and bakeries....... POLKA DOT BAKE SHOP has donated a ton to the bake sale.... 100% of the money raised will go to research for Children.....ticket money from the festival will be donated to Levine Children's Hospital and Make A Wish--- 

If you have a company or work for a company that would like to match what the bake sale makes.... let me know..... I know there is a "good company" out there that will step up to the plate... please look at www.cookiesforkidscancer.org for more information--- 

Dear Friends of Amy - Soooo, I thought it might be helpful to pass along a few practical tips on how to handle your friend who needs you now more than ever. Unfortunately, I know exactly how Amy feels today. 

- Looks of pity are not allowed. It drives us cancer moms nuts. This situation is what it is and you just move on and fight. The only looks she wants to see are ones of steely reserve to fight. 
- Saying, "I'm so sorry" is actually really hard to hear. You say those words if there's nothing that can be done...that's certainly NOT the situation here. (Conversely, saying it sucks is actually good...because, well, frankly, it does!) The word sorry pulls the wind right out of your sails. 
- The people who are the most helpful are those who just do without being asked. Amy will be running on fumes and adrenalin and she balances her family responsibilities with cancer treatment. She doesn't have time to think about what she needs or to think about who she should call to ask. Those who call and say, "here's what I'd like to do" are cherished. 
- Please don't ask questions...Amy will share with you what she wants to share when she wants to share. And besides, our job is not to ask questions...our job as FOAs (Friends of Amy) is to support her and keep that boat afloat. 
- If you want to send a gift...stuffed animals are certainly nice but Grier is about to go through a period of boredom and isolation...gifts that "do" and "engage" are much more helpful.
- Whenever someone asks me what they can do to help, I tell them to have a bake sale to support research. The reason my son and Amy's son are in this situation is because we as a country don't support pediatric cancer research. Apparently not enough children are impacted by the disease that claims the lives of more children every year than any other to justify supporting research. Grier and my son Liam need as many options as possible which is why supporting research is a tangible way to show Amy your love and support. Don't give in, fight back. As one of the oncologists who treats both Grier and Liam said, "It's not science that's holding us back...it's funding." Imagine how it feels to Amy and me knowing that there are treatments just waiting for funding. It's maddening. 
- A quick, "thinking about you" goes a long way.
- The type of chemo Grier is about to undergo is a tough one...but very effective. The main thing it does is suppress blood counts for a long time. I think, if I remember correctly, for Liam it was three weeks. It's a long, exhausting process but she's ready...she has to be...Grier needs her and she needs you. 

OK everyone. Now, let's go do some chemo. 

Amy's Friend Gretchen  

FRIDAY

Grier is feeling a lot better today.... and we took advantage of that all day....!

He went to school with his tote and HUGE backpack for Show and Tell---- he brought his 5 golden puppies that he bought at "FAO Shorts" with his giftcard.... After a full day of TK... I picked him up at the carpool and we headed to the clinic at Levine's-- We had a check up with Dr. McMahon---- and listened to the plan for Monday.  After we left we stopped in the Chick-fila at the hospital and Grier got a milkshake with no whipcream and a cherry.  On the way home I talked him into to getting a haircut.... His soft curls were very cute... but too much attention for him.... and he was called a girl all day in the hospital.  Jeff took him for what we call a "baseball" cut.... it is not buzzed... so I am hoping to lessen trauma when it falls out. I have not even told him yet... I am sure that question will come soon enough.  And maybe it won't...
Grier has been very busy with some presents he has gotten lately.... He told me.. MOM, I am getting a lot of presents but I don't know why...... Thanks so much... I will warn you that thank you notes are way behind.....
Grier went to T ball practice tonight and had a blast.... he really likes to dress the part... full gear... and was thrilled to wear his NEW YORK METS shirt.....  We had a full day as you can tell.

Tomorrow will be even busier... T-ball and Steel Fab... plus the bake -a- thon at Johnson and Wales-- I am planning on being there most of the day--- but I am leaving to see the T-ball game---- Just promise me no questions about Grier..... I am going to help get the cookies ready for the Bake Sale next weekend at Taylor's Finish Line Festival....  I need to feel like I am doing something to help find a cure... and I can't think of anything better than working on this Cookies for Kids Cancer event.

I did find out today from Dr. Kushner that Grier's bone marrow was clean and his urine test was in normal range.... does not change the plan but it was great to know that we are dealing with the one spot in the left hip---The plan is to start high-dose ICE on Monday in Charlotte... after a lot of questions that I had I feel good about this decision.  ICE is not a new chemo... and our doctors here are comfortable with the way the orders are written from our doctors in NEW York--- The worst part will be the 5 days of inpatient stay.... and also the fact that his counts will be down for a long time.... leaving him feeling lousy and prone to infection.....

That is it for now--- thanks for all the well wishes, calls, emails, treats for Grier, visits and dinners... I going to bed so I can get up at 5am ---ready to help get those cookies ready for Charlotte's largest Bake Sale......

ps--- Polka Dot Bake Shop has been an AMAZING donor to all three bake sales in CHARLOTTE--- even my first one in my yard :)---- Please stop by grab some cupcakes for your family and friends.... and tell them you are a friend of Grier's and THANK YOU for helping COOKIES FOR KIDS CANCER----