Re-Entry

Re-Entry....... Anytime you go away from your normal routine it is hard to come back to reality. This weekend was no different than any other time except we missed having Grier with us in Charleston. Hayes and Grace had a great time this weekend and I think it was exactly what they needed ( neither of them wanted to come home!)-- and I enjoyed being with both of them without having to worry about if something was going to happen--- Grier had a great weekend too--- He was well taken care of at the hospital by my mom as well as many visitors, Susanne & George, Bill & Ross-- they "babysat" him so my mom could shower!! He was very busy painting this weekend and I have a stack of new pictures. He also has a new litter of kittens-- I am sure the gift shop loves that he is a patient!! He called early Sunday morning to tell me he wanted Grace's team to stop winning--- he was ready for us to come--- I guess he thought we were there to stay until they lost-- I told him we were coming home Sunday no matter what--- Grace's team ended up winning all four games and were the winners of their age group!! We headed home after the girls got their medals --- I was really hoping to head to our house-- but Grier's counts had not gone up enough for the docs to feel comfortable with discharging him-- so when we got home Jeff went up to the Hospital to see Grier for a little bit-- I packed another bag so I could stay the night at the hospital and got Hayes and Grace ready for school and bed-- And in a split second we were back to passing each other in the hallway and updating by cell phones-- As I got back to the hospital I saw another mom with her daughter doing to the same thing our family was doing Friday night--- standing on the corner and waving up to their child who was at Levine---- I know that not allowing kids in the hospital is a good thing right now for the protection of the patients but it is really hard-- we can not eat as a family like we used to and I have to leave H&G home a lot as Jeff and I have switched places-- Monday morning all was the same-- Grier's counts were still the same-- his ANC was almost nothing--- and we were really just waiting for his counts to start to recover.... he had not had a fever since Saturday and every test was negative. Even the flu test--- :) The decided we could go home--- so we did! Grier's hair starting falling out this weekend and by Monday it was REALLY bothering him--- he would lay down and end up with his whole shoulder area covered with hair-- so we decided it was time to cut it- He was OK with the idea and we talked about new hats and such --- Jane emailed me and told me that Neil ( her husband) was off today.... he works at Salon on Selwyn and would come to our house if we wanted him to--- it was perfect timing and since Grier still has no immune system I felt better about not having to take him out in public--- Neil came and gave Grier his latest buzz-- After Neil left Grier was a little quiet and then the quiet turned into to crying--- HE said he was NOT going to school looking like this and it was too short!! He also said his girlfriends were not going to like his hair-- not sure where that came from!! After explaining to him that his hair was falling out because of a medicine called chemo he was a little better but not much--- He talked Jeff into going to get him a new hat since he could not go--- and they talked to each other while Jeff was at LIDS and Grier decided on an Alabama hat--- :) Grier has no real favorites--- he just tries ALL teams--! There was a lot of drama last night night but he seems to be better this morning-- The hard part will be as his re-enters each new place sporting his new "do"!!! He is very aware of reactions so please be careful--- I know kids will not know what to say but I can only hope for the best! We have to continue with his shots this week and go to the clinic once maybe twice to check counts-- He is scheduled to start round 2 on Monday but his counts have to be good enough to do so-- He is on periactin ( it helps his appetite) and finished the second dose of tamiflu today-- I am going to update soon about the Go Grier Go team that will be walking at the 2nd Annual Curesearch Milestones Walk on Saturday, Nov.7th @ 9:00am-- it is growing daily and I hope we have a super turn out like we did last year-- I hope if you joined the team last year you will come again--- also I would love to see everyone ask 10 people to sponsor you for $10 each if you are on the team-- It is really hard to get corporate sponsors this year so it will be up to walkers ( including spirit walkers) to raise some money for a cure- I am the team captain but I am looking for someone to take this from me-- I also would like to do a team T-shirt but I can not be in charge--- if that is something you are interested in.. please email me- amychristenbury@att.net-- I would love to do a race like T with business sponsors on the back so if you know how to do this please email me too!! More on that later--- the bus just came and I am switching hats!!! Amy

GoGrierGo team link---

click on join team--

96 cents of every $1 goes towards finding a cure for pediatric cancer-- even the $10 walker fee--

http://host.curesearch.org/site/TR/Walk/Milestones/80174482?pg=team&fr_id=1300&team_id=5710

Grier is getting platelets and blood right now--- I guess it is a good thing we are in patient at LCH--- because it was bound to happen and because the whole process takes 6-7 hours it is easier to be in a room-

He is in pretty good spirits-- only once last night did he have a fever of 100.7-- and he slept fairly well-- except for being touched every hour-

We are going to start him an appetite stimulant today-- he is down to 35lbs-- from 40-- :( I can not wait to see how it helps-

This weekend we are going to try something new-- Grace is playing soccer in Charleston and we had planned to all go as a family--- but relapse happened.... and we have not done anything we have planned in awhile--- BUT we are going to try to have fun with Hayes and Grace this weekend as Grier has fun at CAMP LCH with Maggie- It will be a little different but since he is not getting chemo and really just sitting there waiting for his counts to go up it will be a good weekend to spend with the other two -- And the new rule at LCH-- no one under 18 allowed did help with the decision to go--
Wish us luck as we go play soccer and Grier has Camp at the Hospital--

Uggh- I am not sure where the stamina I had 2 years ago is now!!! I am tired ... I know Grier is over this and the rest of my house--- Going to doctors appointments has become the plan of the day-- and Grier and I are done with it all!  I have barely had a conversation with Jeff in weeks--- seems texting is the new way to talk-- he is going one way and I am trying to manage what I used to do plus adding the medical director title-- We went to the clinic yesterday and counts were holding their own-- Grier even announced that he did not need blood when we got home-- clearly... not a normal response to how was your day!!  He played wii--- and then the BIG "D" hit again last night--- he woke up this morning and felt warm so we were on fever watch all day--- around 3pm he spike to the magic point the call had to be made to the clinic--- And they said to come on over so he could be admitted--
This is where is gets a little comical--- The clinic parking is not close to LCH--- go figure since I can place a bet they have the most admissions on a daily basis-- but that does not matter-- I chose to park where I know we will end up and that is LCH--- so it is a longer walk at first but when I am trying to go home quickly it is shorter--- I have Grier... in his "man cave" aka the stroller... and our bag--- we do what we always do walk into CMC to go over the crosswalk to get to the clinic---- oops--- not today.... we were accosted by the under 18 police and told by her we could not go into the hospital--- I tried to explain and tell them he had a fever-- we are on our way to the oncology clinic but NO was the answer!  I really do not have the energy to fight assclowns so I just thought we would walk through LCH--  And they told me we could not walk to the clinic because he is under 18--- NOW....again... I said he has a fever trying to get to the clinic to be admitted--- and she said you are going to have to walk up the hill outside---- because he is  not a patient yet... uhhh... I said maybe not at the minute but we are frequent flyers-- and she pointed to the outside--- I swear.. people are going nuts about the flu-- forget about the kids who have cancer!  
We made it to clinic--- and I do not care about the hike up the hill while I am carrying all kinds of stuff-- because I have done worse in NYC--- The under 18 rule is not that bad but it is hard on families-- Grace and Hayes can not come up and Jeff and I will have to switch in the lobby or just not bring them at all--- 
I am going to sleep before they come in for the 100th time tonight-- It is the most bizarre thing... rest is not something you get here!  

Things are changing a little!!! Grier perked up a little on Saturday night at Grace's family dinner--- he ate a "little" bit and drank a creme soda--- his favorite!! On Sunday, he had even more energy and did not nap--- He spilled the beans about the present he got Grace... but as Grace says... he gave it to me so he could play it--- maybe so but there was a wii marathon in my house on Sunday--- Grier gave Grace wii resort for her birthday and they have loved playing it!! Sunday was a great day for the festival too--- but Grier did not make it to the park-- just asked for a balloon each time we went over there--- :) We are still managing some side effects-- I will spare the details. We are now playing musical beds--- Grier and Hayes share a room and when he is sick we just put him in our room--- he used to sleep in the toddler bed but he is a little big for that now and as he says it is not so comfy!! Plus the crying wakes Hayes so we are trying to balance out who needs the most sleep--- and at the moment the "tween" is the winner! It is almost a no win situation because as soon as we get him back to his room we will be fighting the same side effects again--- So... Jeff and Hayes are roomies at the moment-- Grier had a clinic appointment today-- and after the initial tantrum about not wanting to go to the doctor anymore and screaming about going to the doctor for 20 days straight we made it-- he actually fell asleep from here to CMC--- and most know it is less than 3 miles!!! We decided to do a finger prick instead of accessing the port to check his counts and that went OK---I told him afterwards that his scream could have broken the glass it was so high -- and he smiled-- We left after a quick check up -- they called to tell us his counts and he is nutrapenic ( no immune system) but his blood and platelets are holding steady and he did not need a transfusion yet--- we have to go back to the clinic on Wednesday Morning to check again because it will happen soon- We also start the dreaded G-shots on Wednesday too--- can't wait to tell him that one!!! uggh---I hope I have not lost my touch--- hmmm not sure who I am kidding I was not very good at giving shots. Still praying for no fever-- he is doing better but he has lost 3 lbs--- does not seem like a lot but when you are only 40lbs -- it is !

more pictures on GoGrierGo.com-- they were taken today --- He went out side to practice soccer with Grace but came back in quickly--- he is just not up to that yet- And one picture of him playing the wii--- I should have taken a picture of him doing his "homework"--- it was pretty funny.... I will try to get a picture of that soon-

Cycle 1 -- DONE..... now on FEVER watch!

Oh my gosh-- I think the last three pictures I have take of Grier look the same-- but trust me they were taken on different days! That may give the biggest clue about how things are going around here- Friday we went to the clinic and it was very hard to calm him down and promise that we were not going to spend the night again-- I totally understand since when we went on Monday we were admitted from clinic-- but he was not buying it!! We saw the doctor and guess who did NOT have the flu--- ( seasonal or H1N1)--- GRIER!!! I felt a little like saying I told ya so--- but our doctor said it for me-- he did not think he did either- We did find out that his blood counts are falling quickly from the chemo-- so knowing that made me a little nervous-- because if he gets a fever it will be an automatic admission until his immune system recovers enough to leave and that my friends has no time line-- :( He received the last hour of irinotecan in the infusion room--- he told me he remembered that room-- he might...but who knows-- it is a nice open room with tons of windows and lots of things to do while he is getting chemo or blood transfusions- He played with a remote control car and drove it around trying to avoid tripping the nurses and played NASCAR 2002 on the PlayStation they had--- he was cracking me up as he tried to pick his driver and he was not understanding that this game was a 2002 version and we are in 2009 and some things have changed! After the beep he was de-accessed .. meaning the large needle was taken out of his chest so we could go home-- Not his favorite thing to do at all! We walked to Chick-fila and I ordered whatever he wanted in hopes that he would eat something--- It has been since Monday with not much going into his mouth-- and I will say he took a bite of a chicken nugget when we got home and the milkshake and soup were not even tried!! At this point he is calling the shots -- I just want him to eat so today we are trying a smoothie from Smoothie King and some muscle milk- ( we gave him muscle milk back in 2007 and I am trying to tell him it used to be his favorite and it gives you muscles like ball players--) He is asleep again so I will let you know how that goes! We did make it around the lake for the Festival in the Park-- and he has had a few surprises lately-- Yesterday he woke up and a mom from his class had dropped some cookies off and a note-- he grinned when I read the note and was so concerned that his friend was here while he was sleeping playing and he did not even know it! So as of right now we are on "fever watch"-- I should have a bag and ready to go just in case but have not barely unpacked the other bag! We are being more careful than we have been about hand washing and germs--- I know Hayes and Grace will be exposed to tons at school but we are doing our best to be safe at home- and WASH HANDS--- but 80% of the time you just get a fever because you have no immune system--- I am really hoping we fall into the 20% and skip that admission this time- The good news is that round one of chemo is behind us-- now we manage the awful side effects-- as soon as his body recovers we will start round two- He is having a hard time dealing with wearing a pull-up again-- but we keep telling him it is just in case of emergencies!! I think he is having some tingling on his head because it is very itchy--- I remember this the first time... and it was before his hair started to fall out--- that will be the next "big thing" Thanks for checking in-- we are surviving--- Grace turns 10 this week so we are celebrating that as well-- Amy ps-- Whomever sent me the flowers at home---- THANK YOU!!! It was quite a surprise--

ONE EXTRA "SLEEP"

This picture is Grier and what he did when he got home!! As you can see the couch has been turned into his area!

After another night of hourly urine collection, I was just happy that it was morning and we survived without many issues.... but around 6am the side effects started and Grier and I were battling getting to the bathroom fast enough while pushing the pole along with us- At one point I was running for the bucket while I left him in the bathroom and then the pump decided to quit and have the loudest alarm-- after all that early excitement we got back to bed.
I was determined to find something he would eat for breakfast but failed at that-- he did have some sips of Sprite-- we coasted thru the morning still fighting a fever on and off for no reason they could think of--- but the best news was we could still go home-- So, I knew we could make it to 10pm knowing that--- I left for a little bit and went to get prescriptions that we were going to need when Grier came home-- we had nothing-- ! And then I met Grace and Hayes after school and went to soccer--- really so I could just be outside for a little bit-- Jeff went to the hospital to switch with my mom -- I was coming back after soccer so we could switch again--
BUT the text came in while Grace and I were eating dinner--- FEVER.. 103! I took a deep breath and asked Grace if she was ready and we headed over to LCH-- And what we walked into was not even fit for a MOVIE-- way too much for one family to deal with-- but given that we did not have a choice-- it was handled as best as we could- I can not go into all of it but we had quite a night-
Long story short-- the on-call pediatrician decided he may have the flu-- so they wanted to test him and start him on Tamiflu-- really???? I will eat my words if it comes back positive but I don't think will-- But after she started that process we had to be isolated!! Everyone that came in our room had to wear masks .... Grier fell asleep and I decided I need to talk to someone on the phone-- so I text-ed Anne to call me on the hospital phone since my cell had no service-- We talked for a little bit and I had to go so I told her to call back-- well the hospital cuts phones off at 10--- so I was so mad--- called the operator and told her to let the call come in to our room and she passed the buck to the nurse supervisor-- now I was really mad.... I know why they do it-- patients need their rest... and some people do not have common sense-- but after I explained to them that for two nights they did not care one bit about rest for Grier since they started chemo at 10:45pm-- and I need to talk to someone-
I would like to say I got to finish my call but that is not the case--- !
We woke up this morning and after talking to the doctor he said we could go home by noon-- and we were home at 12:15pm--- He did the chemo at 11:00-- and had his dose of Tamiflu-- still has a random fever --- but they decided to send us home-- We have to go to the clinic in the morning for the last dose of this cycle-- then we wait for his counts to drop... and fever!
I decided after this week if people actually knew the "real life" of pediatric oncology and the havoc it does to a family then there would not be one person not pushing for a cure-
Amy

WE can call this entry take "TWO" since you have to hold your breath and stand a certain way and do something else special ( which I have not figured out yet) to not get kicked off the wi-fi at Levine!!!! My cell does not work either so it is really driving me crazy- Last night was not at all what I had hoped for our first time back--- I asked several times about the timing before we made the Monday appointment to start chemo and was assured that the orders were written and everything would be ready after our brief clinic visit--- Well.... experience had me doubt that but I had no idea we would have been so off--- Basically, we waited around all day.... lab lost one urine collection and then they were not at the magic number so it required lots of fluids and by 10:45 we were ready to start the chemo--- one of which was the 6 hour infusion that requires me to wake Grier every hour for 8 hours so they can make sure there is no blood--- I get the why!!! But the timing in my opinion is unacceptable for a child-- He fell asleep around 10:45pm-- almost as soon as the gave him the anti-nausea meds--- but woke up screaming and shaking around 11:15pm from a bad dream--- after that he was awake so I only had to wake him once around 2 am--- he was wide awake and was not that comfortable--- LOTS of fluids and feeling sick! Around 5:30am we could stop the required urine collection but he still woke up because of the amount of fluids he was getting--- but this time he would wake and go back to sleep--- He has slept all day! Tonight we MUST follow the same time line because making it earlier would not give the bladder and kidneys enough time to recover-- so I think he will be up anyway and I have had a nap so we are ready for the night shift! This has been this hardest way to start chemo because I am trying to be there for Hayes and Grace because I am not out of town but at the same time--- I am not nocturnal-- and I had to sleep today ! I have gotten all kinds of excuses of why.... but the fact is they should not do that to kids! PERIOD! After I left this afternoon I found out that Grier has a fever of 101--- so I am not sure how that will change our plans of discharge tomorrow--- I do know we will not be done until 10pm--- and I have already told them we are leaving no matter what time-- :) Grier is very quiet and does not feel good-- so I am hoping he perks up a bit by tomorrow before we come home--- OK-- off to the baseball game -- and then back to Levine's for the night! Amy

Grier is starting the first of 2 cycles of high-dose cyclophosphamide-irinotecan-vincristine today ( we have been there since 10am so we are still waiting for pharmacy!)
--- I am a little nervous about the irinotecan because it causes a lot of diarrhea- and when we did chemo 2 years ago he was not potty trained so we will see how it goes- The plan is to stay 2 nights and leave after the infusion is done on Wednesday-- then go to the clinic on Thursday and Friday for the rest each day-- We can not do the cyclo out patient because it fries your bladder so you have to make sure you are peeing enough -- this is why I do not want to start this late because he will be up all night--- I guess that is a lost cause now- the infusion is 6 hours!

Grier made the transition back to Levine better than I expected-- He wanted to go to school and I told him we could not go today and he said what about tomorrow??? And then I broke the news that we had to go to the hospital to get some medicine that will get rid of all the bad cells that we can not see-- And then the tears came.... not really because I said we were going to have a sleepover there but because he knows the medicine comes out a tube and he knew his "button" aka mediport would have to accessed with a gigantic gauge needle and he HATES that-- So I had the sales job on-- we were going to play wii--- watch movies... do art.... and I would even get him a goldfish when we got home!! ( The goldfish was from this weekend when Grace asked if she scored 2 goals in soccer would I get her a goldfish--- I told her sure ... :) I was pretty sure that was a safe sure since she is a defender!!) So, Grier got on the goldfish bandwagon!! I guess it could be worse--- a puppy??? Ha!Ha!

After the port was accessed he had to get a flu shot--- so it was a tough morning and we had not even been to the hospital yet---

That is it right now-- try to update tonight--- right now I need to help with homework-- ( Grace not Grier :)

Pray for no side effects--- vomiting and such!!


ps-- I did teach Grier a new phrase today---- with the advise of another warrior... Liam's mom--- Today when he was so upset about all of it I told him he had a right to be mad and he could scream "THIS SUCKS" when he felt mad about going to the hospital and the doctor all the time-- so as we pulled into the parking deck--- I told him to give it a try--- and he squeaked out a THIS SUCKS--- and I told him he had to be louder than that!!! He just smiled and I told him I was OK with him saying that !!! Sorry if you don't agree but it really does suck that kids go through this-!

pictures are from this weekend--- scootering a week after surgery and sporting his new soccer uniform!!! ( Thanks Thomas for bringing it to him)

We landed in Charlotte around 5:30 on Tuesday and it was so nice to see Hayes, Grace, and my mom waiting for us at the hanger--- Grier did really well on the flight and even got to lay down on the couch -- it seemed to help because most of his pain was from sitting straight up-- so we were really thankful we got a flight with Corporate Angels- I kind of think there needs to be a holding area where you can go and decompress before you switch hats from medical director & cancer parent to HOME--- it is a hard transition when you are fighting exhaustion and you know your other kids want things to be normal-- but I guess that would be in a perfect world-- since that is not the case we jumped right back into to homework, signing papers, sports, fundraisers, work, open house at schools, grocery store etc.-- meanwhile caring for Grier who had major surgery a weeks ago- Sleep was not happening at first for Grier.... a little because he still was uncomfortable a bit and he is so "off" that he was up from 2-5am for a few nights--- Now on to the hard part----- I have "written" this update a thousand times in my head--- I was going to tell you how I hate the "c" word--- especially when I hear that invaded a child-- I also now hate the word "goodluck"-- I know some of you are wondering why--- but anytime you go a medical facility they always say "goodluck" as you leave--- certainly I do not consider it to be "luck" to have the "c" word labeling my 5 year--- I know it is not meant like that but just hearing it over and over for the last few years is enough!!!! As we waited for pathology to come back I thought it would be some "luck" to have it say something different than what Dr. Laquaglia thought the something was--- now that would have been goodluck!! On Wednesday, when we met with the surgeon he said he thought the spot was neuroblastoma-- but we would have to wait-- we chose Dr. L because he is a gifted surgeon who specializes in NB so hearing that was a kick in the gut for sure! So... my new word that I happen to hate today is the "R" word--- if you are totally lost at this point I am talking about the word RELAPSE! Pathology came back and it is confirmed that the effing spot that was so small was an early NB tumor- We are waiting on the two offices to speak and get the plan of attack going--- Grier will do 2 rounds of high dose chemo--- we are familiar with this poison and know what it will do to him--- he had 7 rounds last time in 2007--- so I am hoping 2 will be a breeze!! ( I hope someone can time I am being sarcastic!!!) We have been told to expect the normal side effects and fever from being nutrepenic ( no immune system) and lots of blood products-- CHEMO is NO CAKE walk-- As I had many breakdowns in NY I was reminded that relapse is not the same today as it was 10-15 years ago-- I was also reminded that he gets scans every 90 days for this reason.... to find something early...! I guess the part that angers me the most is he looked and acted like any other 5 year old meanwhile NB was starting to invade him again-- no warning, no symptoms, silent and sneaky just the way it started over 2 years ago- And the fear you feel every day came true-- because what they do know about NB is it comes back most of the time- Our plan is to have chemo done in Charlotte.... having Hayes and Grace around even if it is in the hospital and being able to come home for brief times out weighs the benefits of getting chemo at the day hospital and then going back to the Ronald at night- And I have asked a 1000 times... chemo is chemo, right??? NY does not a a special version that Charlotte does not provide-- the main difference is that you have to check in and spend the night at the hospital for the entire round -- Being here will also allow of a little bit of normal... one of us will be with Grier and one will stay at home and take care of all that entails--- it will also allow Jeff to continue to work-- which is a priority.... seems silly but that is how it works! I wish he could "work" when we are in NY but he does not have that kind of job-- Grier will have good days that he will feel good and he will have those bad days too-- on the good days I am going to let him go to school--- and we will lay low on the bad days-- hopefully he will have more good days!! After chemo is complete will will rescan and see where we are in the fight- If you see us out and about please do not ask about it in front of Grier and Hayes and Grace--- I know no one will be saying "goodluck" to us--- after reading this--- but I am a fan of the thumbs-up sign--- !!! As we find out the schedule I hope we can get back into the groove that we were in --- not sure how we did it then but I know it can be done and we can get Grier back to NED soon-- More to come as I know more details and as I process the new information-- we thank you in advance for the prayers, thoughts, and messages--- Thumbs Up- Amy ps-- We have had offers of help already and I have not even thought about it yet--- but I will think of things and it will be posted on the blog--

Preparing to come home!

We are coming home today--- thankfully a corporate angel flight came available  yesterday while Grier was in surgery--- by the time he was in recovery we could tell him we were flying home to Charlotte tomorrow!! I do not think he was overly excited because yesterday's events sent him over the top with anxiety and pain--- more on that later! We leave the Ronald today at 1-- drive to Teeterboro and fly into Charlotte!  Should be home by 5pm- I will update soon with lots of details of what has gone on the last couple of days--  I just need to figue out what to say :) We are very thankful for this company participating with corporate angels--- it not only saves us time and money ( airline tickets less than 24 hours notice are quite expensive!!--- and they do not seem to care why we are booking so late-)  but it will be more comfortable for Grier since he is still recovering from another "crack in his side"-- I can not name the company but it is one our banks!!!  ps -- This picture is Grier showing off his body--- he may have to be Frankenstein for Halloween instead of Jeff Gordon-- :)  I saw some PJ's at target that said Chicks dig scars..... hmmmm???  They are really going to dig G!     

Not much to say about today and last night--- Grier did OK-- he has times when you know he is in a lot of pain and you just hope it is time for pain meds-- He is doing OK drinking and eating.... 
We did not get moving early this morning.... Grier was up until midnight--- and I am not sure how much I slept--- Jeff was sleeping :)  I can tell you that---:)
We got out and walked around a little this afternoon and stumbled into a street festival--- it was OK--- just nice not to deal with the traffic~
Tomorrow we have to be at the hospital at 8am-- not looking forward to it but it was of those things that must be done-  Hopefully we will be able to head home on Tuesday.... really hoping corporate angels still has the flight they told us about on Friday-- we will see!
No pictures today--- it was just a day--- I was going to say normal day but it was no where near NORMAL-

I can not believe we have been here for a week-- I am ready to go home and try to get our family of 5 back into some sort of routine-  The Ronald was "decorating" the lobby tonight and I could not even look--- it was a "back to school" theme-- that is what we should be doing now at home in "Carolina"-- not dosing out narcotics--- !! I hope he has forgotten about the countdown for soccer because right now I would have to wrap him in bubble wrap to let him play-- and I have not even asked the surgeon what he thinks probably because I have a pretty good idea of his answer~

ps-- Jeff was pointing out the typos this morning --- Let me just say I am tired and exhausted--- I do know the difference between a couch and a coach--- and whatever else I got wrong--  I don't spend too much time proofing ---- just trying to keep everyone updated on Grier so spelling errors and grammar does not really matter right now :)-- 

picture is from lunch--- he fell asleep before it came :(
  

Things changed quickly-- in our favor this time!

I have often wondered in the past month how something can change from good to bad so quickly--- and today I got to see something change from bad to good very quickly--- It was just what the three of us needed after yesterdays horrible events- I got to the hospital around 8:30am to find Grier looking not so happy-- he was just staring at the TV waiting for breakfast to come-  Jeff said he had a good night and was awake for most of it-- I think he has been sleeping so much in the day that he sleep schedule is a bit off!  We got him to eat a few bites of breakfast and drink a little---All the doctors started doing rounds so it was one group after another and the word was we might be able to leave the hospital today-- We got him up and walking to make sure he was not in too much pain since we they switched him off of  IV fentanyl to oxycontin-- He did great and kept walking laps around the hospital floor-- Our nurse came by and said we could go as soon as we were ready -  he immediately started chatting and told me what he wanted to wear and was ready to GO!As we were walkig out we saw Dr. LaQuaglia at the door and he gave Grier a high five and said he would see us Monday and then we could go to "Carolina"--- then he started signing the James Taylor song- :)   We walked back to the Ronald and settled in-- I had to go back out and get his Oxycontin filled and get lunch-- when I got back Grier was sitting at the desk coloring and it was great to see-- He was moving all around the room and even squatting to pick up matchbox cars-- I was in awe and all of the last few days seemed a little surreal after watching him--- He ate lunch and you could tell he was hurting again.  He wanted to rest so we got him propped on the coach with a ton of pillows and he fell asleep for several hours-- When he woke up he was not feeling great.. he was wincing as he moved and I knew he was hurting-- it was time for his pain meds so as soon as that licked in we decided to get out of the room--- he needed to walk a little--we went to blockbuster and got a movie and then went by Lenny's for a turkey sandwich to go-- :) That sick feeling came over me as I watched him in pain again-- I really wonder how much pain since I know his pain tolerance is very high-- and he probably does not remember what it is like to not hurt. He ate a little dinner--- got his PJ's on and started watching his movie-- he is multi-tasking a bit -- he is also watching Nascar and Football-- He seems to be more comfortable now--  Tomorrow we will be doing nothing--- we may go to an art place down the street and pain but we will just play it by ear-- I know we have to do laundry-- and after waiting all day for a washer to come open-- which never happened! I am going to drop it across the street tomorrow and the fluff and fold!!!!!!   I have put some pictures on gogriergo.com -- they really show the progression of his mood today- Hopefully tonight will be good and we can all rest-- ps-- I forgot to tell you what happened when I was walking back from the hospital in the rain--- it was really windy and I was going back to shower -- I was about 2 blocks away and a huge gust of wind came and my Life is Good hat went flying into the street and traffic--it was all the way across the street and I said..... ( you can guess) -- I was not going to get the hat-- it was being run over by cabs and really Life was not so good at that moment--- so I just kept walking-- faster--- because I had a hat on for a reason!!!  And all of a sudden this lady taps me on the shoulder and hands me the hat!!! See NYers are nice!!   

Let me see if I can remember the last two days--- they have been very busy and I am going to try to be as positive as I can..... There was a bed crunch so they need to move Grier from the POU ( pediatric observation unit) ASAP--- i felt we were getting rushed out but they kept telling me he was doing well--- Well????? He did just have a major surgery-- not his tonsils out.... but a THORACOTOMY--- As soon as the shift change happened on Thursday morning it was very apparent we were headed to the inpatient floor--- as some of you know I dread that floor--- shared rooms and less supervision is not mu idea of resting and healing--- I pleaded with everyone that came in but basically they needed a room- Around 10-- guest services came to take Grier down to x-ray.... not on his bed but in a wheel chair-- or basically on my lap in a wheel chair--- the only problem was he had not been out of bed yet and that was his first time--- :(  He was in some pain but we kept pushing his pain pump as it would allow !  We got to xray on the 2nd floor and he had to walk a bit... ( first time again) to sit on a stool so he could have an xray--- He still had his chest tube in and his catheter and this was making moving around very difficult-- but he did what they asked and we went back upstairs--- then we were met by PT--- so he got off my lap and walked... or shuffled into the room-- he did have a gown on but his backside was showing because he still had a catheter and we were not able to put pants on yet! Then they did some "games"/ exercises before he could get back on the bed--- his hands were very swollen from the IVs that were put in for the surgery- they wanted him to write his name and he did but I still do not know how--- he cried the whole time and after seeing his hand today I can understand why-  The whole time PT was working on him his nurse was tweeking his IVs that were causing problems and his catheter that was not working-- there was too much going on fr his first time out of bed--  He finally got to rest some and had a few sips of Gatorade-- And soon after they were moving us to the floor-- We packed our stuff ( not much) and carefully picked him up with all his "things" hanging from him and put him in the stroller and wheeled over across the hall--- I was about done at that point and I am sure they could tell---  After all we were working on not much sleep and a lot of stress-- We walked into our room and it was a "corner room'  just like the tiny room that I have terrible memories of from Oct. 2007-- so as you could imagine I was holding back tears and really wanted to wheel him out of the hospital and run-- but we settled in and just sucked it up as we always do-  Jeff went back to the Ronald and I stayed--- Grier woke up a lot-- it was almost as if he was a newborn again-- his oxygen level would dip low when he was sleeping and that still had to be monitored like the night before-- but this time it was me doing it-- He had pain about every hour so we would press his "button" and he had night terrors again-- this was probably the worst....His IVs did not work during the night-- as well as the stpid catheter that was not working well as we left the POU-- not sure what time they worked on that-- Grier was over it-- Jeff came back in the early morning and we knew the goal was to get rid of the catheter and chest tube b/c it would make it easier for him to get up and move-- which is good for his lungs and to prevent complications.Both were out by 11 and then the IVs were not working--so that was being worked on by tons of people-- he had been screaming since the cath was taken out and the awful chest tube-- if you do not know what that is google it-- He had calmed down a bit and we were having him blow bubbles and we talked him into trying to use the bed urinal to pee so we could get him up and moving--- it hurts when a cath comes out because you are irritated and when he went it burned--- he then was shaking all over and I called the nurse--- then we called the nurse practioner because he was shaking uncontrollably-- well, they needed blood to run tests and those IVs were not working so after several people attempting to draw blood and missing they finally called someone from the day hospital-- and she was able to fix the IVs-- Grier was so upset that anytime anyone came in he started crying--- He then spiked a fever and it went away quickly.... and we let him rest!  PT kept coming by but after 2 hours of hell we told them to let him rest.... later the blood they took did not do so they needed more and the whole IV saga started again--- but after the first try.... we said.. stop!  Please call the girl who came from the IV room--- and they did -  Grier ended up losing all 3 IVs and they started a new one today but Connie fixed the problem-- He ate a little lunch.. grilled cheese and a smoothie ---Things looked a bit better than the early morning.  We got him some new pain medicine-- Dillaudid--and got him up and walking and it was like a different child.  He walked and stood up and did games like kicking and throwing for over an hour-- Hopefully we can get him out tomorrow if things stay the same as they have this afternoon -- no fevers are a must and he has to be mobile and not need oxygen while he sleeps-- Jeff stayed tonight so I could sleep some--  I hope when I go back in the morning I will hear he had a great night and is ready to get out of M9- That is it--- I have left out tons of things -- too tired to type them all-- Hopefully we will be  home on Tuesday or Wednesday--- we need to do one more procedure before we can leave NY-

I just wanted to do a brief update about today's events-- it will be brief.... because I can barely see the screen and I can't type without hunting for each letter! We got to the hospital at 6am--- we left the Ronald at 5:45am and walk in the dark the 5 blocks -- it was dark outside and pretty quiet on the street-- We waited-- imagine that??? And finally started the pre-op process--- We had to talk Grier into putting on the gowns but he eventually complied if he could play with Dad's phone-- ragdoll blaster has been quite a bargaining chip lately! He did great as expected-- Dr. L came in to ask if we any other questions and he had to sign Grier's side where he was going to make the incision for the thoracotomy-- he did in purple pen and Grier giggled because it tickled--The anesthesiologists were really nice-- they let Grier push the propofol and carried him to the OR with the promise that they would take good care of him- That was about 7:45am- We went to the lobby/waiting room and waited for our beeper to go off-- and it did around 9:45-- we then moved tp the 6th floor to wait to talk to Dr. L-- he was getting ready to close Grier up-  At almost noon we were taken back to PACU-- and then finaly moved to the POU ( Pediatric Observation Unit)  The POU is a step down version of PICU-  He is there right now--- resting comfortably-- he has talked a few times-- He has a chest tube, catheter, and lots of leads and IVs-- He woke up around 3 and said real loud-- MOM... I have a question??  It surprised me a little because he had been just nodding for a while-- and I said-- OK... what is it?  And he said--- Am I naked under these blankets... ?  We laughed and said-- Yes.. And then he wanted to know about the catheter-! He does have a pain pump that he can push--- but he has not used it yet-- Occupational Therapy has come in to see where he was physically before today--- and that was easy..... he is an ACTIVE ATHLETIC 5 year old- They are going to come back tonight or tomorrow to get him up and moving- The news from Dr. L was he got what he saw and looked all around for more--- we will not know exactly what it is until Pathology comes back but there is an idea- Hopefully tomorrow will be better and we will be even closer to answering Grier's question... Am I done yet?  I know he wants to go home-- I thought Skype would help by seeing everyone but that really makes him asks CAN WE JUST GO HOME?--- And to be honest I am ready to go home too--- ! 

After a few hours of waiting for our 11o'clock appointment we finally saw the surgeon and his team--- signed all the consents and learned about the surgery--- It is call a thoracotomy-- ( I am sure I spelled that wrong)--  In some ways the consult was easier than the last time... I had no idea what to expect and hearing about all the risks that could happen was shocking--- I can still hear some of the original conversation to this day-- Dr. LaQuaglia has a nice soft voice and it seemed more calming today but the same info was shared-- It is surgery-- The biggest difference for me is that last time I knew Neuroblastoma was lighting up in his body and wanted it OUT asap-- this time we are putting a "healthy, active 5 year old in surgery to see what the "bleep" the something is-  And to top it all off-- everyone of the doctors and nurses thought we were in NYC for scans-- because Grier looks so good--- Have you started school yet?? I then had to say... no we are back-- we were here 4 weeks ago and then the tone changed a bit-- because they know --- I guess everyone of the doctors is an exaggeration because there were a few whom I had emailed and talked to on a regular basis the last few weeks--
Here is how tomorrow will work.. we have to be at the hospital at 6am -- Grier is the first case of the day and will start at 7am-- I do NOT know how long-- but depending on the length and how many blood products they needed will decide if he goes to PICU across the street-- or he could go to the POU at Sloan if he is not on a ventilator-  The incision will be mid back area-- not as large as the one he has on the other side-- he will get a temporary line under his collar bone so he does not have to be stuck all the time- Dr. LaQuaglia is going to do a frozen slide of the something -- pathology takes 7-10 days!! Hopefully with no complications he will be ready for the Ronald in 4-5 days-
We are a little numb and Grier is just being Grier--- he is so good at letting people look at his body and press and prod everywhere-- The only issue was the IV again but after it is in he is fine-
 
We came back to the Ronald to get ready to go to the Natural Museum of History when we noticed some Yankee tickets on the board--- So.... instead of sitting here in the box we are going to cheer the Yankees on-- I know... crazy but really we are just going to do it--- It is not like we were going to go to bed early tonight-

I will update when I can tomorrow--- I may have someone else do it-- not sure about Internet connections and timing--

I am still hopeful that this is nothing-- and very content with the fact he is in the best hands possible tomorrow-  We would appreciate all good thoughts and prayers especially tomorrow and while we are inpatient-- 
Amy

ps-- Grier is dressed for the Yankees game---- I will post pictures tomorrow???

Pictures-- Grier on the Subway

Grier at Yankee Stadium

Grier posing at Dunkin Doughnuts

Grier showing me "tiny cups" at the Yankee Store-- 

Grier eating popcorn while yelling ""yets" go yankees..."