We made it home this morning by 10:30...  Grier was excited and starting talking a little more as the time got closer to going home.  His chemo was only 30 minutes today so as soon as it finished we left... well, we did have to get discharge papers and figure out how we were going to get all our stuff to our car in the pouring rain in ONE trip.... both of us opted NOT to wait on guest services... so Grier said he could walk and we loaded UP the stroller.. it was quite a site!

Last night went as well as it can when they are giving him so many fluids... it just means there is a lot of peeing... at one point he said I am tired of going to the bathroom!  Neither of us slept well, between 2 bed changes in the wee hours of the morning and the hourly "MOM.. MOM.. I have to pee" it was a long night!  I was awake when a text came in from my NYC friend, Gretchen... I think it shocked her when I replied at 1:30am! Actually probably not.. she has experienced the hospital sleep... so she knows it really does not happen!

This afternoon, Grier and I watched a movie and we both fell asleep... he is in good spirits... taking his medicine well... I think we are going to try school for a little while tomorrow... he has an appt. in the afternoon for the last dose of chemo for this week..  He wants to go so I am following his lead and letting him enjoy his time with friends... we will be on "house arrest" soon enough when his counts bottom out so as long as he feels ok he can go and have fun!

Thanks for all the cards and well wishes... he has been thrilled with all his orange surprises.. :)
I am so happy we survived this hospital stay... actually not only survived it but for the most part we had a "perfect experience"-- everyone did what they said they were going to do!  We had some great nurses... especially Chante' aka "scrappy"-- she started our stay off just right!! Even the girl from food service surprised Grier with grapes this morning... he did not ask for them but I guess that sarcasm works sometimes... !

This picture was sent to his class.... They sent him a group photo today with all their thumbs up.... so Grier sent this back to them!

Day 2 of chemo went pretty well.... we started off on time and Grier felt pretty good. He ate his breakfast... we went on some field trips to the 12th floor Garden?? ( that is a ? because not sure I would call it a garden), the gift shop, outside for some fresh air, and finally to the cafeteria in the main hospital--- he rode the IV pole the entire time and trust me when I say we were getting some looks as we went from place to place! He was really excited because we had some visitors coming after​-​school. After a quick visit to the play room he wanted to come back... he complained of a headache. He decided to wait in bed for his friend. He was getting quieter and quieter and you could see him trying to fight through it because he had plans.... Leila got here and he was quiet... and all of a sudden he was nauseous.. chemo had just ended for the day and I was hopeful this was a wave that he was feeling. Not so much.... the headache continued to get worse and then came the need for the PINK bucket.... I thought he would bounce back after that like he usually does until he curled up in a ball and the BIG tears started.... his head was really hurting... we regrouped a little and added some medicine to his IV... and it knocked him out. I guess a good thing... but he missed his visitors that he was so excited to see. I did find out later that his zofran had not been given around the clock... and we had missed some doses today.. that has all been fixed and we are playing a little catch up on the nausea...
Tonight he is feeling a little better... his face is puffy from all the fluid they are giving him... and he is peeing every 30mins- 1 hour-- all night long. jeff and my mom were here when I ran home to see Grace and Hayes... and to take a shower. That is the hardest part of being in Charlotte... trying to balance home and hospital without the guilt... When I am in NYC it is easier because I just take care of Grier... here I am trying to juggle home and hospital.. I had this grand idea this time to pretend I was out of town.... and not try to do the "home" part.. but it did not happen... oh well, one day I will figure out how to make this work for all of us.

We hope to be home sometime in the morning... he gets a 30 min infusion of chemo and then we are out of here.... IF not unexpected happens... PLEASE... We both need a good night's sleep.

That is about it... Grier and I are getting ready to read the cards that his class made for him today... and his reading buddies class.. Mrs. C & Mrs. S brought those today... he is very excited and hunting for a few from his good friends!!

I will leave you with a funny story about this place.. Food Service is lacking here... and seems to have gotten worse since the last time we stayed overnight. Grier had ordered a banana for breakfast... along with some other things and they brought a GREEN banana... She says as she brings it over... This is GREEN but put it in the sun to ripen.... I laughed ... and said OK.. and later looked at the GREEN banana .. How long was it going to take to ripen.... we are planning to leave tomorrow? Then she came for a lunch order.. and we ordered grapes and other things... she delivers and says they are out of grapes... This cracks me up... I think LCH needs to go grocery shopping... first they are out of Kleenex... and now grapes! If only the customer service was like the Ritz... not just the bill!

MONDAY, MARCH 28, 2011 3:39 PM, EDT

Just a quick update to let everyone know that chemo started early this morning.... yep, you heard that right... after 11 rounds of HIGH DOSE Chemo we finally got it during the day.... 

Last night went well... we both stayed up too late... and Grier finally fell asleep around midnight! We were chatting and playing Angry Birds... Grier and I started to talk about "wishes" and I asked him if he remembered when the people from make a wish came to our house.. he says he does but who knows... I then asked again if he could wish for anything what would it be?  He got very serious and said he wished he was not so scared to sleep in his own bed.  hmm... not a wish for make a wish but we will keep trying to come up with something! 
 I am a very light sleeper... and just couldn't get much sleep but I did relax and watch Grey's Anatomy at 1:30am!  I also read the old blog to see how Grier did with this type of chemo last time.  He had it in July 2010... and from the sound of my blog he did fine.... I remember that week well, he was in- patient and was discharged on Wednesday and went to be with the family at Jeff's mom visitation that night.  The next day he did not go to the funeral but after I took him to chemo I dropped him off with Susanne and they rode bikes around the lake while I met everyone at church.   I am really hoping this week's chemo is very similar with the side effects. 

My mom came today and we did a switch so I could come home and take a shower and check on Hayes.  He is not feeling well.   

Heading back up to LCH- 

Amy

When in Rome...

TRYING out his new pillow for the upcoming sleepover!

ok... I think I have abandoned the idea of "flight mode" and come to grips with the "fight mode"--

After a whole lot of discussion  and weighing the pros and cons we will have chemo in Charlotte @ Levine's-- And basically I need to let go and adapt to the mode "When in Rome"... because it is NOT going to be like NYC but that does not mean anything horrible either....  With the chemo Grier will receive he will need lots of hydration before he can start.... to prevent bleeding in his bladder... so we will go to LCH late Sunday night, get accessed... and start hydration through the night.  Hopefully, chemo will be ready from pharmacy on Monday morning... He will get three different types, cytoxin ( which will be given over 6 hours.. Topetecan, and Vincristine-) the plan is to be able to leave Tuesday sometime... and finish the topetecan in the clinic on Wednesday and Thursday.  That plan is the perfect version... I know things can happen... and we are not infusing him with sugar water... it is HIGH DOSE CHEMO... so if something happens and we end up staying longer so be it... at this point I don't care.... I just want the chemo to make the NB retreat and give us some more options --

so... how did we get here??? Last Friday was a bit "old hat"--- I almost thought we were in the clear... I was reading the HIGH DOSE 3F8 protocol that we were on the schedule for on April 4th... getting ready to talk to the doctor about any questions I might have for upcoming 3F8.... and he pulled up the MIBG scan on the screen in front of me.... he was very quiet... as I was pretending to read the protocol... I was watching him and listening to the "hmmms" he was silently making.  Then he started to ask me questions about what treatment we have been on since the last time we were there ONLY 8 weeks ago.  At that point, I had that bad feeling -- and it proved to be true as he said... I am not a radiologist but I think we need to wait on 3F8 right now... until a final report comes back.  yes, I was caught totally off guard... and I do question "where is that motherly instinct?" really... I thought he was feeling great.... and he was but obvously something was brewing inside him... I know some people just found out on Wednesday... but I have been thinking about this and talking to many people since last Friday.... the decision to stay here is "right" at the moment... We have been traveling for almost four years... it is hard... actually just being in the hospital is hard... but being divided as a family makes it harder.  We will have to travel again for things that we can not get in Charlotte... and bottom line is  chemo is chemo no matter where you are....

Today has been busy -- 2 doctor visits... I finally made the time to take Grace for her check-up... Well check... whatever you want to call it-- I just have not had a moment to schedule it... and it was on my calendar and I was not going to cancel.... All went well at the office... I love our pediatricians-- they keep up with the blog so I didn't have to go into all that has been going on-- Today was just about Grace and that is what I wanted it to be!  The second appointment was to the

Damn Pit Stops!

4 years= 209 weeks.. 

1461 days ... 35,063 hours--

That is a lot of time spent feeling like you are in quick sand!

I was waiting to write our 4 year anniversary update when we returned from NYC... March 27th is that date I will never forget.... and amazingly enough March 2011 will be another date on our mental calendar... 

Grier's MIBG that he had last week showed new disease on his hip... same hip that we treated last time.  He also has suspicious uptake in site of thickening in the lining (pleura) of lungs on the left-- It has been recommended that we start high dose chemo... called CTV.. I am assuming this Monday.  I need to call and talk about that.  As much as I want to stay here I am not in the mood to deal with chemo starting at night... and the other nightmares we have dealt with at LCH.  Yes, I don't forget those long days at LCH and as much as they have promised before~ I am not sure it will start at a decent hour.  The other option is for Grier and I to go to NYC and get chemo in the clinic everyday but go back to the Ronald every night. The only issue may be getting home before his counts drop and he is immune compromised. 

As my friend said last time... this is another pit stop in the long race... BUT it sucks... My game face is not quite ready but it will be soon. And we will do what we have to do make this disease retreat again. 

We will just add this to our schedule and get these 5 days of chemo done.  Then he will have another MIBG/CT scan to see how it is responding.  

OK-- I am going to ask for normal for the next few weeks... email me or text me... I will not have time to talk to everyone.  Please don't just stop by... sign the guest book... 

Sure I am disappointed for a number of reasons but he/we can do this again..   He doesn't feel bad nor does he act sick ... so he will get some medicine to kill those unhealthy cells... and  hopefully not feel too bad from the medicine that does not know the difference between healthy or unhealthy cells.  

damn pit stops!

Amy

a quick entry to explain the silence.... we are waiting on FINAL reports... the silence is all I can handle right now... if you have been on this journey with us a long time you know I share the good news quickly... just sucks we are even at the point again to question what is next?
Amy 

Myers Park Magazine Article... March 2011

Wednesday, Thursday, Friday in NYC

A NYC favorite-- a black & white cookie!

Here is the update I tried to do while I was in NYC... but the wireless at the RMDH is a bit slow and I was easily frustrated with losing the post once... so I called it a night and did not try again!
I am going to mostly post pictures of the last few days -- easier than trying to describe the events of the 2 1/2 days in NYC...

Grier's work at school on the Wednesday we left for NYC

The "always" hungry Grier said yes to the offer for dinner on the plane!

Wednesday afternoon we flew to Teterboro, NJ-- this was our "luckiest" thing that happened last since the flight does not make us go through security lines and be at the airport a long time.  It was another easy flight and Grier was treated like a king.... see photos! A driver picked us up at Jet Aviation and we had a nice ride into the city and arrived at the RMDH by 8pm.  We checked in... took our "second home box" up to the room... and started to unpack.  We needed to get some water and gatorade for the morning so we headed back downstairs to go to the corner store and to take the luggage cart back to the lobby.  This is where the fun started.... This luggage cart has a mind of its own.. so the wheels were a little hard to steer.. as the elevator doors opened on the 11th floor.. Grier got in first and I was following him with the cart. Well, the cart was not going the way it need to so I backed it up and tried to readjust.. when I did that the doors shut with Grier in the elevator... I could hear the loud "M O M" as the elevator went down... About that time I got a text from our friend, Julie ( Adam's mom)- she was at the RMDH too-- Adam was doing 3F8 last week. She was nice enough to get our brown bag of "goodies" we would need for the next two days to complete the tests.  I told her Grier was on the elevator alone.. not happy and I was headed down to the lobby in hopes that was the button he pushed too--  I went to the lobby... and got the possessed luggage cart out and parked and Grier was not there... so I waited a minute but you could see the elevator was not coming right down... I thought I could hear him... I told the front desk.. that I lost Grier and I was waiting in the lobby... and I was going back to 11 to see if he went back to the room.  Meanwhile I am waiting for two elevators that are slow on a good day... !  About the time the elevator was headed down I got a text from Julie... "guess who I found on 11?" She heard the screams too... so that was our first hour in the Ronald... after that we took the bag went and got water and headed back to the room to make beds and take some medicine.  Doesn't that sound fun???

Lenny's for the first meal of the day at 1:00pm

wiped out after a very long tests of tests and waiting

Thursday morning, Grier woke up early... he main job was to drink "contrast" for his CT... he did a great job with that.  We headed to the hospital and began our other life... the first step is the get his port accessed... he does not like this and it seems to be getting harder because his"button" on his chest is tilted a little... so after that traumatic event we saw some nurses we haven't see in awhile... visited with Adam and Julie before he started his treatment and waited our turn to be see for a check-up-- He was hungry and I was too-- but no breakfast before the CT... A brief summons from the insurance admin-- revealed that BCBS is my second nightmare~ I don't talk about insurance things too much but this part of the 4 years has been a pain in my ass.... as much as I should care I really don't at this point... I am doing all I can to keep my head above water managing a household with 5 people in it... and I don't have time to be the insurance watch dog and get them to do with what I thought was their job... so basically it is my fault as Jeff reminded me when I got home... yes, I should open those piles of bills from MSKCC, BCBS, CMC more often... but I need a few more hours in my day to deal with that- that visit was second to the elevator excitement.... and I basically told the guy I am doing what I am suppose to do... I fill out the forms... Jeff works so we have insurance and I am not in AL paying the claims... he didn't love that response but it is what it is...! You really do not want to hear my whole rant on insurance...
 We finally did the check up and headed down to the CT area to wait... and wait... and wait.... it was suppose to be at 10:40-- but it did not happen until after 12--- and he had an echo scheduled for 12.... we finally did the CT... and headed up to echo... after that we went to have our lunch/breakfast at Lenny's across the street from the hospital because we had to be back for a 2pm appointment.  We had more waiting... and Grier was ready to go.... he finally took a nap while we waited for his nuclear med injection that happened around 3:10--- again... not enough time in between to leave and get out of the hospital because the MRI was at 3:30-- So, after much bribing and negotionating we headed up to the MRI suite to wait some more!! They finally called us back and Grier was very quiet and I had a feeling this was going to be tough... we locked up all of our stuff in the lockers... we were wanded for any metal on us and then headed to the room... he hoped up on the table.. layed down and put his head in the contraption... made some other adjustments so his head would not move during this 40 minute scan.  They handed Grier a button and told him to push it if he had an emergency?? We both had earplugs in because an MRI is so loud... We finally were ready to start... Grier has done these before without anesthesia... so I knew he could do them but we had never done an MRI in NYC... As soon as the first loud sound started.. think jack hammering and high pitched rythmic noises... Grier's lip turned downward and tears were rolling down his face.... I was trying to talk to him but I could not hear myself so I am sure he could not hear me... I was giving him the thumbs up sign.. but it wasn't working... I read his lips and he was "saying I can't reach the Button!" ugh... i didn't want him to push that... we were going to have to start again.  So, I keep doing whatever I could to calm him down... kept saying it is almost over etc... The tech told him he was moving and we would have to do a picture again.... he was swallowing... but we did a few extra pictures... finally the scan was over.... very stressful.... As soon as he got off the table he was back to his chatty self... ready for me to pay-up! We walked to FAO for his reward :)  On the way we got stuck by the end of the St. Patty's Day parade on 5th Ave.... made a few detours but arrived at the toy store.... He found another dog to add to his collection and we headed back to the Ronald... stopped at the Yankee store on the way... as were were walking back to 73rd he says he love to walk around NYC.... well, I said you don't walk... and he said, I know I like to ride while you walk-!"  We left our room around 8:30am and arrived back from our day at 6:30--- we went to see what the St. Patrick's Day dinner was in the dining room... saw Adam and Julie-- and ended up not staying too long... a crowded, loud place was not the ideal spot after our day... so we headed back to the room to chill.... and take the list of meds he needed to take.

something he should not be so good at!

Our "second" home

ouch!

2 of the 4 :(

flying home and fishing :)

Friday am came quickly... we headed back to the hospital at 8 to begin the L O N G nuclear med scan that slowly scans every part of his body for NB cells... He did much better with this quiet scan but he stills hates the part that I have to leave the room for 2 minutes... After that scan was over we went back to the Pediatric Day Hospital to wait his turn for Bone Marrows.... He kept asking when he was going to get the "white medicine"-- aka propafal.... he loves it! We waited a while but when they called us back to the procedure room... Grier was ready to push his own anesthesia... The doc was knew and looked at me liked I was crazy when he asked her if he could push it-- :)  She ended up letting him and as soon as the white medicine went into his port his eyes rolled back and body was limp.  I walked out and waited for him to wake up...

We flew home on the 7pm flight on USAirways with Adam and Julie... and a bunch of other people :)--
Saturday am Grier woke up and was really sore but wanted to play in his soccer game... so with some narcotics on board he got dressed in his purple uniform and played....

ready to play!

That is about all I have for now.... I am very lucky to have a little boy that I enjoy traveling with... and who is a good traveler.... he did great with all these tests... and I had the best support from friends that were in NYC -- I didn't get to see one of them but I could not have felt her presence anymore that I did... she was just a text away... And Julie was my comic relief at times while we both were in the "other" world with our boys.... SO when Grier shows you his new pair of shoes that he chose you will realize he earned them for doing what is unimaginable for kids.... port access, 4 hour urine collection, CT with contrast, echo, blood tests, nuclear injection, taking potassium iodide drops for 3 days (YUCK!) MRI, MIBG scan, and Bone Marrows... in 2 days~

more to come.... 

12 +

We leave today around 5pm..... which is a good thing.. Grier gets to go to school do his routine and then we will jet off to our other life.  We are very close to our 4 year anniversary date of when all this started.... so that means we have done this routine CT, MIBG, MRI, Bone Marrows = FULL WORK UP at least 12 times.... in the last 4 years- we have had a few extra here and there when there was a problem... BUT by the 12th time I should be a pro.. I know the feeling of stress and how to cope with the day to day while we wait and do each scan...RIGHT!!! The truth is it is rarely the same... except I have noticed I am in a fog... don't really want to talk and very focused ... Grier is getting ready too-- he is asking his schedule and wants to know what pictures are when and how long he needs to stay still for each one... He is even trying to sneak a trip to the "shoe" store in... He is not dumb!! This time it will be hard... Our Thursday is packed with the most we have ever done in one day... 5 appointments... And on Friday we will have the MIBG and Bone Marrows in the morning... don't know an exact time yet... we won't know that until Thursday afternoon  when we get the call from anesthesia.  We are planning on coming home Friday night...

We are flying to Teterboro, NJ with corp. angels.... which helps so much... no security, no lugging bags, stroller etc. to the farthest gate.. We will arrive around 8:30p-- unpack our "box" and move in to our room... We know some people there this week getting scans and doing 3F8 so we will get to see them.
Home will run like clockwork... everyone is set here with their routine and I bet they won't even have missed us by the time we sneak into our beds late Friday night...

I will update from the Ronald... it will probably be very short because I am not bringing my laptop... I am going to travel light this time :) Hoping the luck of St. Patrick's Day is with us during these two days...

Hello MARCH!

Just an update... Grier is doing well... He has finished his first 14 days on & off of accutane... He actually started the 2nd cycle this week.  He had his follow-up appointment at the eye doctor and his prescription in his glasses need to be changed... I hope this helps him wear them more.  Our days have been very "normal" lately... appointments seem to be less and less and he has been to school for two weeks straight! We leave for NYC next Wednesday to start the scan process again... 2 days of HELL from anxiety while I try to make NYC fun in between MRI's CT's & MIBG's!! Grier is OK with this idea... not thrilled that he is missing school and especially not thrilled that we will be gone during St. Patrick's Day-- we might have to catch a leprachan at the RONALD :)- He loves school and the best news is that he is reading on his own!  He went on a field trip to the HOSPITAL( yes, you read that right!) this week and told me some funny stories when he came home.  He said he "knew" all the answers to their questions.  I can only guess what he said... The hardest part of having "normal" weeks is getting back into the hospital routine... I can not believe we are already having scans again.... these 8 weeks have flown by... I am trying not to think about the "what if's" and "what is next after next week"... but after reading about the possible treatment it scares me quite a bit.... I am not sure I am ready to get back into 3F8 at an escalated dose he has not had before... the dose that he had was HARD enough to watch him go through. I know-- one day at a time... and I know plans can change so I will just focus on next week~ so much easier said than done!

That is it for now.. hoping to enjoy a few more normal days before we leave on Wednesday...