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.....