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----

a stay at LCH instead of home----

My updates are more regular now.... ugh...

After I updated last night we had an unexpected visit to the hospital..... Grier had a fever when he got off the plane last night... I was hoping it was just under the magic number that makes me call the doctor.  When we walked in the door at home I took his temp and he was 100.1--- so I was watching him.  I knew he had "normal counts" meaning he was not immune suppressed so I was hoping it would be a quick antibiotic infusion just in case situation.... He went to bed and the fever continued to climb... I made the call I hate making and was told to go to Levine.... It was around 12:30a-- I called NYC just to get his most recent counts ---arrived at the hospital a little before 1am ----- and the fun started... poor little guy was burning up--- the poking and prodding and all the stupid questions that I have answered about a hundred times since we started this journey were asked.... the port was accessed... not the best especially since he was just de-accessed in NYC earlier that day-- a portable chest x-ray was taken at 3:30a--- and the fun continued until around 6a--- and he was sleeping soundly....

They kept him for observation today and thankfully has not had a fever since the early hours... he had another dose of the antibiotic before he was discharged home around 5:30---

He is perking up--- he was so mad to be at the doctor again..... and he shut down.... But he is up and moving and eating... and playing... even had a visit from a friend ---

I am counting down until I can say Goodnight to the threesome..... a little tired.... I guess last night was a dry run for what we have coming in the next few weeks---

I was asked to post this ... it was left as a FB comment... not sure when she had the time for this because she had a LONG hospital day with her son....

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

I am doing this blog update without emotion.... without much thought so I can bring people up to speed and everyone is on the same page.... (really so I am not asked in the next few days how scans went.....)

A new spot was found on Grier's MIBG scan-- it is on his left hip... not soft tissue disease.... it was only on the MIBG not on the CT scan.  Dr. K looked surprised... or maybe I was reading into his expression because I was surprised... I had a feeling.... things were going south when I got the call to meet with the Doctor before I left... so that was the first movement my stomach dropped.... I listened and questioned him as he showed me the SPOT on the hip--- He suggests using a chemo called ICE ( IFosfamide , carboplatin, Etoposide)--- it is three very high dose chemo agents that are given over a five day period-- inpatient if done in Charlotte-- out patient if in NYC-- Grier's blood counts will drop quickly and stay down for a long time... transfusions are a must and most likely... a long nutrapenic (no immune system) hospital stay is almost certain...and with our luck a definate... and the curls will be gone... but hopefully the NB will be gone too---

Some of you saw my Facebook post today --as I was packing and getting ready for the airport... trying to hold it together for Grier....and I did for the most part. I had lots of support in NYC... thanks Gretchen... you know the right things to say because you know how it feels.... I did not get a chance to tell some friends because I was not going into it with Grier around.... sorry.... I know some could read it on my face....

Tomorrow I am scheduling a freak out moment when I am home while all are in school--- after that we are getting back to fight mode.... because that is what we do--- Monday will probably be the first day of chemo--

Confusing.....

I know I confused most people that read the last caringbridge update that said Grier was HAMA positive--- sorry!!!... I really can not tell you if it is good or bad.... certainly if I can not have him go through that painful treatment I would be thrilled but at the same time.... I hope he had enough treatments to do what the researchers hope it will do--- "teach his body to kill NB cells"-- we know they are probably still there but too microscopic to pick up on all these scans-- so doing a treatment to prevent relapse is doing something in my opinion....  OK---- I will hopefully have more answers next week after we meet with our doctors in NYC.  That was the other confusing part..... We are still leaving tomorrow for NYC because we were going this week for his 3 month "work-up"-- his HAMA status does not change this trip.... it may change the one in June-- when they retest him --  if he is still positive.  After three years of missing countless important events and holidays I am not too bothered with missing Mother's Day--- I will be home until 1pm with Hayes and Grace and then spend the rest of the day with Grier--- doing who knows what in the BIG APPLE.... :)  I am sure he has some plans.....

Grier ended his week with Beginner's Day at Selwyn... I included a picture of him with the school mascot... he seemed to have a great time... but getting there was a little funny.... I could tell he was anxious during breakfast and he was not eating.  Yes- that sends me in a panic... another one of those things ... so I asked him what he would eat... made it and he did not eat that either.  After nagging him to eat-- he said... "I can't eat breakfast because I feel like I am gonna BLOW!"  He obviously was more than a little nervous about going to beginner's day.  It was only an hour and when I went to get him out of the room --he said... "THAT was FUN but I am ready to go see Mrs. Nickell now"-- and MOM that was longer than I thought.... -- so off we went back to preschool to spend the rest of the day :)

Scanxiety is in full swing here.... I know some of you are worried I am going by myself--- Don't be -- I will be good.... lots of distraction with Grier.... even if the news is not great -- really what else can they tell me??? I know we can go to plan B..... hoping we don't have to but I know we are in good hands to make those decisions.  This is not very funny but Grier was watching my screen savers on the computer and some of Fall and Winter popped up--- he had no hair... and he paused and said-" MOM, I do not want anymore of the medicine that makes my hair fall out-- I told him I know but you sure are cute with no hair... and if the doctors think that is the best way to make the bad cells go away then we will have to take that medicine again.  NO comment from him.... but I was not going to promise no more chemo....

My next update might not be until Thursday.... Happy Mother's Day to all the mothers out there..... Also Happy Nurses Week to our awesome nurses that have taken such good care of Grier--
I am excited to see some of you next Saturday at the Bake-a-thon @ Johnson & Wales for the Cookies for Kids Cancer bake sale-- I will be there all day... well, that is the plan... thanks for helping.. it will be a fun day :)

Time to update...

Just wanted to write a quick update about our last week at home..... Grier has been busy with school and T-ball... he has finished his 5th (14 day cycle) of Accutane---- and is back into the swing of things.... We even had a trip to the clinic in Charlotte for a blood test.  It is HAMA time again... can you believe it??? I will probably hear something tomorrow.... if he is still negative we will be back in NYC for 3F8 the last week of CMS.... and Grier's birthday... one day at a time right???? There are a lot of if's right now--- so all those dates are penciled in and no plane tickets have been bought yet!

This Sunday, Grier and I will go to NYC for his quarterly check up--- he is ready... and I am ready... actually I have barely unpacked from a couple of weeks ago.... It will be the two of us this time and I keep telling myself that they can not tell me anything I have not heard before.... I know we are in good hands and these check ups help us catch things early..... yes.. I have been giving myself this talk a lot--- scanxiety is a crazy feeling... but after 3 years I am coping and finding peace in just living in the moment.  I feel like a lot of important things are riding on these results for the next three months.... but then again there always is something that we look forward to and scan results can either make it happen or make us take a detour.  We did just find out that we are flying on a gulfstream to Teeterboro, NJ---  I told Grier and he said YES... that is my favorite plane.. "the one with the couch"!  Thank you corporate angels and the bank that is donating the empty seats.... makes life a lot easier when flying solo and we can stay home a little longer on Mother's Day.  Next Monday will be pretty easy in the "oncology world"-- he will have to be accessed ( which involves lots of screaming) and after that he will have his normal check up.... later in the afternoon he will have his nuclear injection in preparation for the scan the following morning.... He will also have his CT the same day after the MIBG scan--- On Wednesday, he will have anesthesia for his MRI of the head and bone marrows.  We will fly home with USAirways that night.... Our plan is to be back at preschool Thursday and Friday..... and helping prepare for the Cookies for Kids Bake Sale on Saturday.

We will finish up this week with T-ball and beginner's day at the school he is going to next year.... I am sure I will have lots of pictures of that milestone....  Thanks for checking in--- I will update as I know things... but I am not taking my computer to NYC.. really no need... takes the Ronald forever to get me a password... and we will be home before that happens :)