We had a very busy Labor Day--- we started off with breakfast at Cafe Luka ( those people are so nice!!) and walked straight to Central Park so we could sail a boat on the lake--- We got there and the boat rental guy was not there... and I was hoping he would show up because that would have been three times trying to do this! We ended up walking around... climbing on the Alice and Wonderland statue, climbing rocks, watching turtles at the turtle pond, and eventually winding our way back to the boat rental area-- with a little help from google maps on our phone!!! When we arrived back the guy was there and we put our name on the waiting list--- waited for a little while and then enjoyed all 30 minutes of sailing a boat--- Grier figured out quickly how you need wind and which way to move the sail-- he had fun and we had fun just watching- After we finished Grier came up with something he needed-- he always does and actually make the trip fun trying to find the item--- He wanted a pillow that has those "bean bag beads" in it--- so we were trying to decided where to go--- and the funny thing was he knew exactly where to go--- we just forgot the name of the place- ! We ended up eating lunch on the way and found the store he wanted to go in--- but the "pillow"was not just right--- seriously he is quite a shopper and it makes me laugh-- he immediately spotted a new pair of what I like to call "coach John" pants aka track pants-- and all requests for a pillow were gone!  I won't go into the detail of the shopping but he did get the pants--- it will be nice to have another pair especially since the weather is a little cooler than expected.....I know some of you are laughing becasue you know what a sales job he was doing-- and really today he did not need to! We ended our day and Grier seemed to have a really fun day-- I just asked him what his favorite thing was that we did or saw and he told me buying the pants!!!! I said BESIDES shopping  and he said sailing the boat was his favorite along with his new pants!! Tomorrow will be quite different-- I know to expect it to be long because tomorrow will be like a "Monday" at the clinic-- and MONDAYS are LONG!  I also know what a consult is like with Dr. LaQuaglia --- my unknown for tomorrow is all Grier's observations and questions--- so we will see how that goes.  As much as I would like tomorrow to answer the questions -- it will not-- it is basically a formality--  Thanks for all the thoughts, prayers, rides, and messages here and on FB---  they do make being away a little easier....  

Fielding's guestbook entry made me think of something--- Grier was sailing his boat next to a seven year old who has his own "sailboat" -- it stays in the boathouse-- needless to say... he was great and actually told Grier he was doing really well for the first time with a "rental"-- that was his words not mine!  Anyway, his cool blue bottom boat with two sails and Grier's #65 almost crashed a few times-- and the other little boy would say.. sorry my fault... but I would see Grier's smile and knew his "NASCAR" mind was loving the near misses with his #65!  ( NOT to be confused with his carpool number !!!  :)  The little boy in front of us got 85!    
There are a lot of pictures on gogriergo.com-- caringbridge does not let you include as many--- none of the cool blue boat.. it was going to fast for the camera phone!!

ps-- Please do not get a pillow--- :)  I am going to try to find one for him-- I need it to fit in the stroller so he can lean on it- And if you see my mom tomorrow wish her a Happy 60th Birthday!! We are going to celebrate when we get home--- :)   

Have you ever gotten somewhere and wondered how did it happen? I am not even talking about the last 2 years.... I am really talking about getting to NYC today!!! Somehow all the packing, list making, grocery shopping, organizing got done and all of a sudden we are back in a familiar place-- the Ronald!!!  Ugggh!  It was 4 weeks ago we left the Ronald knowing about the "something" and here we are again-- We flew JetBlue and had a nice flight--- it would have be a lot nicer if I can figure out how to fly w/o ear pain!!!  But with the TV's and not having to schlep our carry- on around ...we had a NICE flight into JFK-- took a cab to the RMDH... and arrived around 8:15?   There was a little confusion at the check in desk -- they thought we were coming tomorrow-- which we were until we could not get a flight so we came a day early... they tried to say they did not know but after I told them what day the email were sent they found it--- imagine that!  We have a nice room similar to the first time we stayed here-- so that is a plus!  We have done some rearranging and pushed the two twins together so they sleep 3!!   The biggest question of the day is when are we checking out or when are we going home... ( that is from Grier)  and I have to say I do not know!  Not an answer I like --- but it is the truth-  I heard Grier tucking in his animals telling them they were on a trip and we were going home... (pause)  Grier: MOM... when are we going home, like how many days are WE staying here ?  Mom:  I do not know .... we will see what the doctors say... Grier:   ( silence) The most excitement of the day was figuring out how to use Skype-- As you can see from the picture-- we can video chat with Hayes, Grace and Maggie-- Tomorrow the PDH is closed so we do not have to go anywhere near that place-- I told Grier we may go sail the remote control boats at Central Park---  he said OK-- we will see what else we decide to do--- but I am going to try to stay far away from Times Square!  That is it for tonight-- I am tired and Grier has settled down after a quick crash game with his cars and watching a race on TV-- what could be better??? hmmmm... you do not want me to answer that! 

We are on the rollercoaster again!

What a wild and crazy week--- Certainly not what I had hoped the 2nd week of school to be like! I am not going into a lot of details right now... but we are headed to NYC- Not the weekend plans I had hoped for on this Holiday weekend.... ( I was really hoping to go somewhere with Jeff for the weekend sans kids) to celebrate our anniversary which is today--- Oh well-- Here we come again NYC, MSKCC, and the Ronald! In some ways this week has been long --trying to get answers to questions but when the information started coming in it was very fast-- not fast enough to book a later flight, so we will leave on Sunday afternoon-- We did have a flight on corporate angels but they got the departure city wrong and called to say they had made a mistake--- really.... not the best luck! Grier did make it to school so he could meet his teachers-- and his soccer team roster and schedule showed up in my inbox--- ALL to start on the 8th --- but it will all have to wait! We have a surgery consult on the 8th and the OR has been booked for the 9th! My calendar has been cleared... Jeff is coming with us and we will finally get to see what this "something" is-- I know I just made that sound easier than it will be but I am hopeful that he will do better or the same as he did almost 2 years ago! I will do updates from NYC -- and I am hoping we are back in CLT quickly-- Sorry to be so vague but until we have the consult I am going to not guess on any details- ps-- Grier went to his first Panthers game last night with my mom-- he had a great time!!

I am not sure how I can follow Anne’s last post but I will try---

When Anne and I went to NYC with Grier a couple of weeks ago we decided she would write an update for the blog— I really thought it was going to be about the “experience at the Ronald and hospital—“ because unless you are there in person you really do not fully understand and I know I do not adequately describe how hard it is-- Then the words “slight and something” became the new focus and obviously took the tone of Anne’s update to a whole new yet familiar level-

Yesterday’s MRI of the thoracic spine went as planned—We quickly jumped back into a routine that we know all too well at Levine Children’s Hospital. This trip had a lot of “first” for us as we got to experience the new hospital-- We arrived around 12:00 and Grier had been prepped (by me!!) for the fact that he was going to have an IV because I knew he was getting “ milk of amnesia!” aka—Michael Jackson’s drug that he has made famous! He was coping with his anxiety about the IV but I was almost kicking myself for telling him so early! —We were planning on different things he could try this time to help him make it better—this was a conversation we were having—just so he could call the shots—or at least think he was—We decided he was going to wear his Spiderman mask and pull it up high on his face so he could not see the needle--- and we were going to try the magic cream on both arms so the nurse could have her choice of veins- All incidental things to talk about but he seemed to calm down. Our appt was at 1:00—but we had to go over to the clinic (another building!!) to drop off a sample of urine because they want to run that test again—I was pushing Grier in his stroller as we went through the old hospital across the cross walk to the clinic—I was on my NYC pace and giving people “flat tires” left and right!! We arrived back to the Children’s Hospital at 12:30 and waited--- until 1:45… not bad! The waiting room was VERY child friendly—large flat screen with Disney channel—but Grier played with my phone instead!!! We were the only people in the room. They called us back at 1:45 and Grier retreated to the stroller as we went into a holding area and I knew he was just anticipating the IV--- nurses came in and quizzed me on health issues--- and it always makes me laugh when they say.. So other than Neuroblastoma… any other health issues!!! I always so No--- but isn’t that one ENOUGH! I know what they mean—but it is always the question that drives me crazy— Anyway…. We waited some more and then Child Life came in to show Grier a mask? She asked if we had seen this before and we had but we usually do not use gas – he likes to push the white medicine--! She asked if he had a line in or a port and I said no—I thought we would get an IV—Well…. Grier was so surprised when she said No IV until after you are asleep. You could see him mood change immediately and he started chatting and playing~! He colored in his “MRI” coloring book—and relaxed—which was a good thing since he did not walk back to MRI until almost 4pm! He amazed the nurses with how relaxed he was and how much he knew about the medicine and machines--- at one point I said—not really what you want you son to be good at---!

He was done with his scan around 5 and then we went to recovery--- again… another wait for him to wake up! Grier likes to sleep so I was thinking we need to start trying to wake him up or we will be here all day—so I asked for a wet wash cloth and he started moving--- He was groggy but ready to go--- He told me he had plans!! And he did—he wanted to go to Wal-Mart!

We headed home around 6:30 --- It was a long day at the hospital—and I realized that having a 5 yr old going through all this again is different than 2 years ago!!! Oh—the questions were fast and sometimes tough as he watched everything going on around him and in the elevators! It was very nice to drive home in less than 5 minutes and transition from the craziness of the past 6 hours to home— The hospital is very nice and everyone there was great – we even had a visit from our favorite nurse, Susan! And other than Susan-- most was unfamiliar with Grier--- he was young and has vague memories of that year and a half—People remember me but they did not recognize the little boy with hair!

We are waiting now—for what I am not sure—I am going to call the clinic today and see if we have a plan from NYC yet---

I promise to update as needed and I hope you all reading this promise to respect the fact that we are not really ready to go “there” with the kids until we know for sure what the something is! So please read Anne’s last post—I am on the phone or waiting for a call a lot so email is the best way to get me—I may not respond but I do read them J-- As for now we are adjusting to two new schools and I want that transition to be their focus-- It is my hope we can figure this out quickly because I have a 5 yr old ready for TK and soccer--- he WILL get there just do not know when!

Thanks for all the notes of FB and the blog and caringbridge—

Amy

Topsy Turvy!

Anne wrote the blog tonight--- my thoughts are going 1000 different ways---

Amy

Dear Go Grier Go Team:

As many of you know, I had the absolute privilege and honor of accompanying my dear friend Amy and wonderful Grier to New York City, for Grier’s most recent battery of scans and tests at Memorial Sloan Kettering Cancer Center. I had no idea what to expect. We have all read the Go Grier Go Blog regarding these “routine” check-ups—quick walks to MSKCC, lunches at Lenny’s, walks to Time Square, cupcakes at Crumbs Bake Shop, trips to Toys-R-Us, and evenings at The Ronald. Well folks, there is absolutely nothing routine or easy about these incredibly difficult trips to NYC. Truth be told, this was a physically and emotionally exhausting week for us all. In reality, this was a chaotic week filled with miles and miles of back and forth between MSKCC and The Ronald McDonald House, sleepless nights, the constant waiting, as well as the phenomenal displays of unconditional love, fear, optimism, grace, frustration, humor, determination, wishful thinking, risk, laughter, pain, friendship, tears, both stamina and fatigue, devotion, questioning, heartache, and hope. I found myself in complete awe. There were contrasts, thyroid protection drops, urine collections, physicals, scans, nuclear medicine, IV injections, MIBG, bone aspirations, fevers, joint pain, and vaccine injections—not experiences for the faint of heart. It just plain sucked! You’re right, not eloquent words in the least, but I speak the truth.

Towards the end of the week, we felt no news was good news, but before we got on the plane we thought we would check in with Dr. Kushner—inquiring particularly about the CT Scan and the MIBG results. Within moments of our e-mail being sent, Dr. Kushner responded, “MIBG is negative. CT shows very slight enlargement of something (likely scar tissue). Probably nothing, given the negative MIBG scan. But want to be 100% sure, so need to repeat CT in 4-5 weeks, that can be done at home.” Not what we wanted to hear. Our hearts sank. I watched quietly as Amy’s mind went a hundred different directions—processing all the blogs, updates, and outcomes of so many other families also living through this hell. Eventually we gathered our thoughts and developed some questions for Dr. Kushner—Where is the slight enlargement? Do we have to wait 4-5 weeks? Could this change be from a cough he had weeks ago? We waited with bated breath and with tears in our eyes. He replied, “chest. No. Yes.” Again, we wait. And again, it sucks! And yet again, we go on living as if life is normal…all the while knowing, life hasn’t really been the same since 2007 for Jeff, Amy, Hayes, Grace, Grier, Maggie, Mimi, and G-Dad.

This leads us up to today, the day after Grier’s re-scan—only two weeks after the initial sketchy results. So, as a devoted friend, I wanted to take a moment and update everyone on what we have learned today about our chatty, attentive, upbeat, athletic, charismatic, generous, and willful Grier. Yesterday’s CT Scan definitely showed “something.” This “something” is unwelcome, it has grown, and we need to figure out exactly what it is. Currently, we don’t have a precise timeline for the days and events ahead, nor do we know what course of treatment the doctors will decide on. What we do know is that Grier will have an MRI tomorrow at 1:00pm and that he will be flying to MSKCC in the days ahead for a biopsy/surgery by Dr. LaQuaglia. Dr. LaQuaglia is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Grier for 11 hours straight to resect his tumor on October 29, 2007. We are not speculating at this time about what the biopsy results will show. Obviously, this news has come as a complete, devastating, and disappointing blow—especially considering how great Grier looks and feels, as anyone who has seen him about town can confirm.

Amy and Jeff have many things on their plate. Most importantly they feel they must stay strong and focused for Grier, Hayes, and Grace. They respectfully ask that you keep this information to yourself—being sure not to discuss either the knowns or the unknowns with your children, as they have not had the opportunity to process all the new information as a family. We must be sure to give them all the time and space they need, and that they ask for.

If the tone of my message seems a little callous, it isn’t meant to be. It is only meant to give Amy, Jeff, Hayes, Grace, and Grier the greatest amount of practical and helpful support at a most stressful, tense, and chaotic time.

So, here it goes:

1. Please don’t ask questions about Grier when Grier, Hayes or Grace are around. In fact, please don’t ask a lot of questions in general right now about the details or the disease or the possible outcomes. They don’t have the answers and answering them is exhausting.
2. Please don’t call or stop by right now. We ask that you check the blog for any updates.
3. Please don’t ask Grier how he feels or Hayes and Grace how their brother feels. Grier feels and looks great. As a wise woman said, “When people ask him how he feels, it confuses him because he doesn’t understand why people are acting like there’s something wrong with him.”
4. Please don’t ask questions that make them recount the whole ordeal, the facts and statistics, or ask them to speculate about their future.
5. Please don’t be afraid to acknowledge their pain, if appropriate. It’s OK to say, “This sucks.” Oh, does this ever suck! Please don’t ever say “God doesn’t give you more than you can handle,” or “things happen for a reason,” or “you are so strong.” Frankly, these kinds of greeting card clichés should be illegal.
6. Pray if you pray, believe, hope, send love and good thoughts and only wonderful intentions during this time. We will take all of the powers of the universe right now. And please know that the Christenbury family thanks you all for your friendship and support.

With many thanks,

Anne Sawyer Barnette

New school Year and a CT!

Grier and I got out of the house by 7:15 this morning to head over to CMC--- He did great at the CT--- the only problem was getting the IV--- the nurse was OK at best and after she asked why he was already crying because she had not done anything yet... I was OVER her--She missed the first time in the left arm and then wanted me to put the numbing cream on both arms and wait-- Grier said "NO..magic cream" So I told her she could try on the right arm and if she could not do it I was going to ask someone else to do it--Well... she told me she was the only one and I said I would walk over to the clinic or Levine to find someone used to kids-- it was a bit iffy for a moment! She finally got the IV in and off he went into his scan ( I am not sure what she would do he was not still---a lot of kids have to held by several people!)-- The longest part was waiting the hour while he drank his contrast. We just played games and watched TV-- he was great-- I forget how lucky I am sometimes-- I woke him up at 7:00 told him to get dressed because we had to get another picture taken and off we went-- he could not eat until after the scan--and he had to drink 16oz of contrast- he did that with no complaining-- !

We left the hospital at 9:30 and headed to target to get his surprise--- "a zhu zhu pet??" That is a "pretend" hamster ( just my speed these days)! We could not find them and he settled for a Hot Wheels Car!

So.. now we wait some more--- I am so ready to exhale! On a normal scan week it takes me a week or two to get back to normal so this bout of scanxiety is hopefully almost over -- ! I am looking forward to seeing Dr. McMahon tomorrow- Grier has already told me he has not been to that Charlotte doctor in a LONG time-- not sure how he will react in the clinic-- He is right--the last time was December-

Here are some pictures of Grier this morning--- he dressed himself in his Yankees stuff--!!

Grace and Hayes are at school-- I did see Grace before she left and she was very nervous-- I am going to get a picture of her getting off the bus--- Hayes was asleep when I left so I can't wait to hear about his first day of middle school---good thing I am picking up a few boys at carpool today because I know I will get the scoop from them!

one more day of waiting???

Amy

10 days later..... I just found out that Grier's Bone Marrows were OK and his urine test was OK--- It was a longer than usual wait this time with lots of emails back and forth trying to get SOMEONE to look at these results--(Everyone seemed to be on vacation and the ones left were very busy with the patients in town) I was very frustrated because we have never had to wait as long as this to find out these results--- and with the CT showing something "slight" it just made the wait worse than normal! I guess it really does not change anything regarding the follow-up CT but it does make me feel a tiny bit better. The hope is that the "slight enlargement" is scar tissue from his surgical area... I am not sure if I have ever said but his "J" scar is from his belly button .... around to his mid- back area.... He calls it his "crack in his side"--- it does look like that a little! Grier's CT is scheduled and will be done on Tuesday, Aug. 25th in Charlotte--- yes... that is also the first day of school so it will be even more exciting than the "usual" first day of school around here-- I guess I should not be surprised since that is our luck!-- Grier has to be a CMC by 7:00am and we should be home by 11:00-- He will have to choke down their version of contrast and it is 100 times worse that NYC-- but with some bribery he will get it down-- Grier has been very busy since we have been home.... it did take a couples of days to get back up to speed but he is 100%. He went fishing last weekend and had a great time. Grier is ready for TK and soccer.... He has started his countdown until they start.... I am ready for Aug 26th so we can continue with his "big" Fall plans with no complications--- I will update when the CT is over -- Until then we are praying the "something" is scar tissue! Amy

Anne, Grier and I made it home from the whirlwind NYC trip last night-We did all that we had to do at the hospital meanwhile trying to spend some time doing some "sightseeing"--- exhausted may be an understatement !!  As Anne said -the logistics of the trip went well--- we had a great room at the Ronald ( both beds worked... it was not tiny... and it was quiet).  We did not have to do too much waiting... and this work up did not include a MRI so it was one less sedation--  The best was that the Friday bone marrow test got moved to Thursday after his MIBG scan since he was already under anesthesia-- This was huge!!! And would not have happened without the help of a favorite nurse!!  The airport travel was the craziest--- the flight there had tons of turbulence and the taxi ride to the Ronald was awful-- The flight home went well-- except we got stopped by TSA trying to tell us that we had too may bags-- ( 3 people.. 3 bags!! she did not count Grier I guess!!)... security went OVERBOARD on our toiletries... and after we finally made it through and repack all our stuff-- we get to the gate and the agent tells us our bag is too big--- So we asked him to measure them and he was annoyed-- he did and then said well.. 1 one too big but he thinks they all weigh more than 40lbs!  We finally just told him to check all 3!! I was really mad as I watched people bring bags on the plane that were gigantic-- !!  The problem was the flight was over sold and they were asking for volunteers--- thought about it for a second-- but they were going to have to up the offer!!! $300 credit on USAirways was not going to do it! Enough of the logistics--- I know why you are reading this update-- I do know some results and that is the reason it has taken me so long to update-- Yesterday... as we cleaned the Ronald and packed I decided I was going to email and see if anyone could tell me something before we left the city--- It was not 2 minutes after I hit the original send button that I had a response... Grier's MIBG was negative (GOOD).... but his CT shows something....(possibly scar tissue) "slightly enlarged"--- This area has always been there and is NOT something new-- just slightly enlarged. As most of you know I think the MIBG scan is the BIG one --I always worry about that one because it lights up Neuroblastoma-- so negative is good-- nothing is lit up-- But I do know from experience of friends that sometimes a spot does not light up--  He emailed and said  that he wants Grier to have another CT in Charlotte in 4-5 weeks--  I am going to get in touch with our Charlotte docs and get this done sooner rather than later-- We do not know anything about bone marrows or urine so we still are waiting on those tests to come back.   We are in a holding pattern right now as we wait for more results and figure out how to find our what the something is!  Please do not share with children yet-- because this could possibly and hopefully be nothing and I do not want Hayes and Grace to worry for nothing- Grier is fine-- except for the pain from his bone marrows (4) and 4 vaccines he got-- This really slowed him down this time-- He usually does not complain but I could tell by his speed and the way he walked that he was hurting more than usual-   I will update as we know what we are going to do first-- Thanks for checking in- Amy

Our day in pictures- too tired to type!!!

We made it to the Ronald with no problems---- we checked in to our room and then went out exploring in the city-- we made it to the candy store and Grier did some shopping!!! Then we headed to FAO and finally dinner--  

Tomorrow we will head to the hospital early to start the day --- 

More updates to come-- 

Pictures -- (l) Grier eating his "fried egg" gummy-- Yummmm!

                    (r) Grier pulling his luggage through the Charlotte Airport-- knows his way around that place-

It has been a LONG time!

I have had some subtle hints about the lack of updates on Grier so I thought I would catch everyone up!!

 

We were very busy at the end of school,  sometimes I think May is crazier than December—we also have 2 early June birthdays Grier’s (5^th) and Hayes’ (12^th)- It is just crazy at our house. Grier is now officially 5- and he loves to tell you! He had Spiderman cupcakes, doughnuts with sprinkles and a Boston crème pie/cake!! I am going to put a picture of the cake that my mom made—it was good—but he told her next time it should be white instead of chocolate—I think he was a bit confused—he really just wanted a Boston Red Sox Cake!! He switches favorite teams daily for all of you who know he likes the Mets--!!  This week it is Detroit Tigers—you just never know!

 

We all survived the end of school, baseball, and soccer—Hayes graduated from ETES—we are very proud of him—he got all A’s and lots of awards!! Grace finished 3^rd Grade with all A’s and lots of awards too--- They are both looking forward to school next year—Hayes will be in middle school at AG and Grace is going into 4^th grade at Selwyn. Yes—that is a change for both of them! One of the most asked questions lately has been about Grier…. Is he going to Kindergarten? Grier is going to stay at First Pres and will be in TK---! Everyone knows that we “red shirt” our summer birthdays! He is ready to go back to school too! 

 

We went to Topsail at the end of June and had a great time--- we just wished we could have stayed all summer!!

 

July has been a bit slower--- I did not plan any camps—(I am second guessing that today!!) and we have been just hanging out—at the pool, park, and with friends---  Grier did go to Veggie Town (aka Vacation Bible School) and had a great time!  He really likes to color these days so that week he made lots of Art projects--- sometimes 2 of the same one!!

 

Now it is almost August and the second most popular question is… Are you going to NYC soon??? We are headed to New York on August 4^th—I can not believe it is less than 2 weeks away- We are changing things up a little this time--  Jeff and Grace will be at home while we are in NYC— She is going to go to tennis camp for the week and Jeff will be working!  My good friend, Anne has agreed to come with us and help during scan week at MSKCC—I have promised her a nice comfy room at the RMDH!! Grier is excited to show her Dylan’s Candy Bar—He is already planning on getting her some lemon heads! It is a good distraction because he has not asked too many questions about the hospital and what we are going to do there- He does know he has to go for a check up but he quickly changes the subject to what we can show Anne-- Hayes will be in NY that week as well… but he will be playing baseball--- !!

 

I know I have forgotten a ton of things we have done but I think the most important update is our upcoming trip to NYC—

 

Thanks for checking in-

Amy

 

 

 

The results are in!

One week ago today we ended another grueling round of scans --- Grier bears the physical part of all 5 tests but we have the emotional part.  We are very careful to make Grier feel like everyone in the world does this and this is no big deal-- I think he actually believes us.  I know this from funny stories people tell me-- he tells them about getting his picture taken in a "doughnut" machine  (CT scan) or when he was asked about going on vacation... he quickly said he was going to NYC to live at the Ronald McDonald house!!  I always cringe when I hear these stories but I guess it is what it is and it shows he feels like everyone does this sometime in their life!

I think I thought these scans would get easier over time but I am so wrong!  We have gone without treatment for almost a year and they seem to get harder.  I think one reason is because we have met so many people fighting to keep their kids alive and we read their updates and know that the statistics are right--- not good! Relapse happens for NO reason and is unpredictable-- I always seem to hear about multiple relapses right before Grier's scans and it makes me mentally prepare for the "what-ifs"--  I told someone recently I always leave Charlotte with a PLAN A and a PLAN B!  

I hate waiting for tests results and even though we heard preliminary results of the big one ... THE MIBG"  before we left last Friday ... I still wait to hear about all 5 before I really exhale!  I have gotten better about anticipating the calls early in the week-- I know that a couple of the tests take several days and that does not include weekend days--- so Thursday was my guess this week--I also hate to see the area code 212 come up on caller ID--- so I have learned to email Dr. Kushner--- hitting send is really hard because I want to know but also I would rather NOT!  Denial is a good coping skill I have!!  This morning I sent the email I always send.... Hi Dr. K--- any news on Grier's work-up?  I left and took the kids to school and on my way home I was wondering if he had responded yet--  I was not far from home but I had to know so I checked my email from my phone---- I heard the ding... and I was afraid to look--- knowing all too well it could be someone else!!! Well--- I looked and it was from him and I could see most of his email without opening it--- It said the same thing it said in January-- " NO NEUROBLASTOMA... WONDERFUL!   I checked the date to make sure that was from today and then cried--- happy tears!  The rest of the day was spent getting ready for PLAN A!  We have a birthday party to plan for Grier... & SUMMER PLANS for all of us...!  I am so happy I can tell Hayes and Grace that for the first time in 2 years I will be at the end of the year awards at their school!!   I am also thrilled that Grier will finish a full year of preschool--- this has not been done since he was in the Toddler Class at Covenant!  

Thanks for all the notes and messages sent last week--- they help us get through!  A special thanks to Kim Robertson---thanks for always thinking of us during these stressful times!

I will update later-- with pictures of Grier's Super Hero Party--!  His choice in the theme but very appropriate!  He is a Super Hero! 

 

I thought I was going to write a long update tonight about our CRAZY day of waiting--- but I am too tired!  

We were told to be at the hospital at 10:30 for our 11:30 MRI--- so we were there and that is when the wait began--- Let me just say that by 3:30 Grier was finally taken back for his MRI--  Apparently, this day was full of emergencies and since Grier had anesthesia with the MRI and then Bone Marrows right after it-- we just had to go with the flow- and if it were Grier in an emergency I would hope people would do the same and not complain-  This is an extremely busy place -- we met lots of people in the waiting room today-- Grier entertained them with his southern accent so it helped pass the 5+ hours!  The hardest part was not eating or drinking (NPO) since last night at dinner-- Grier is really a good sport about that I on the other hand need some caffeine !!!  He knew he was going to eat a Willy Wonka bar that Jeanna got him and that is what he did after he woke up-

We got back to the ronald around 5 --- I was so glad we did not try to change our flight-- that would have added so much stress to this day.  

We did get a quick moment with a doctor and he said the prelim of CT and MIBG are negative--- we still need to hear about MRI, urine, and BM--

I will update more from home-- this day was mentally exhausting-- I watched so many people get bad news... it is something I dread to see at Sloan--because as with the emergencies that happened ..I know the roles could be reversed at anytime--

We should be home by 8 :30am so I need to watch grey's, clean, pack and  sleep.... You would think I had enough hospital drama for today--- now I just need Jeff to stop flipping to the Yankees game!!!

one more day!

Today was fine-- Grier was up really late last night because of the late nap in the stroller yesterday -- So, around 11 he was out and I knew this morning would be tough to get him up at 7--He surprised us and got up and ready to go-- 

He had his MIBG this morning at 8 and we were handed a sleeping Grier around 10-- He slept off the anesthesia a little--- Did not do anything exciting but we needed a day to chill--- I am exhausted and I know Jeff and Grier have to be too-

This afternoon he did the 4 hour urine collection--- and I met Jeanna on 3rd Street for some window shopping and dinner-- She was here on business so it was good to see a familiar face!

That is it-- we know nothing from the tests so far-- And as Grier has reminded me several times today--- ONE MORE DAY and then we are DONE!  

We are back in the room but there is NO chance Grier is going to sleep anytime soon--- he had a long nap this afternoon in the stroller as we walked back from Build A Bear on 46th & 5th!  He really needed to rest so I am glad he did--

Today went well--- we met with the team and got "our goodie bag"-- this bag has all the supplies we will need for the next several days, YUCKY sski drops ( iodine to protect his thyroid from the radioactive injection-- he takes these for 3 days), urine collection bucket, a throw up bucket-- ( you never know when you need it !), contrast & measuring cup, forms that have his height and weight on them to hand to each technician at each test- and last but not least the BIG container with some kind of preservative in it for the 4 hour urine collection-- It has warnings all over it about being dangerous if on your skin-- all of this is in a HUGE brown Shopper!  I think it should be printed with the words "I HATE CANCER" ---  but it is plain and lots of people carry them down 1st and York-

His check up went fine-- he does have another bad ear infection and they can not believe he is not complaining--- UGGH!  They are going to check him every day to make sure it is getting better-- The bad part is no vaccines this trip!  Really bad since he was going to get his 4 shots while he was asleep--

CT went fine-- he fell asleep while we were waiting and when I woke him up he seemed fine.  As soon as they went to touch his IV to inject contrast he started to cry-- I held it together and told the tech to keep going and Grier settled so we could finish--- there was not any anesthesia back up so we had to do this-- I think it was the IV causing the problem--- It is a good one according to the nurses and if good blood return means anything they are RIGHT!!!  LOTS of BLOOD--- even Grier commented on it-

We didn't have to wait too long for his MIBG injection and after he was done we headed to Build A Bear for his reward-- He made a Mets Bear and he is wearing a uniform WITH cleats! He had fun doing this for the first time and it was not crowded which made it more enjoyable-

We had a quick dinner at the pizza place-- and played in the playroom-- he is coloring now and may do that until he just can't keep his eyes open anymore! 

We head to the hospital at 7:30 for his MIBG and then we are done for the day--  so maybe we will get out of there by 10~!  

I will post some pictures soon--- they are of us waiting all day and "Home Run Henry"

Grier wants everyone to know he has 2 days left!!! 

Live from NYC !

I am locked out of caringbridge--- :(  So, I can not update it--- anyone know how to fix that?

Three months have flown by and we are back in NYC for Grier's check up--- We flew in this evening with a fairly uneventful flight--- we did have a "first" for us--- we got to witness an unruly passenger almost get escorted off the plane! She wouldn't power off her cell phone!!!!!! Seriously.... She was right behind us and Grier only stopped coloring twice to ask what was going on! Finally it was settled and we took off-- a bit late-- but it was better than going back to the gate!

Grier had a great flight-- coloring the whole time and challenging me to a game of skeet ball--I was a bit worried since we found out late last night that he had some ear pain--- what timing- But with Andrea's help we made it without any pain due to the pressure-- whew! Thanks Andrea!

Grier choose to go to Southern Hospitality so we walked to dinner without our stroller---NY is so much nicer when the weather is nice-- It is a little hot... I am still waiting for the Air to work in the room-- :(

Tomorrow we will head to the hospital and do a check up with the NB team. After that he will need to chug his contrast so he can have his CT scan done--- Hopefully all will run on time and we can make our 2 o'clock appt for his injection for the MIBG scan--- I have done this enough to know that will run late :) As soon as we can we are going to Build A Bear--- that is the reward for staying so still in CT! He is still trying to talk me into going to BAB first instead of the hospital!!

That is it for now--- I will update a lot this for those of you that are following this crazy adventure we are on---

ps-- Grier yelled "I call shotgun" when we were waiting for a taxi-- 

D-DAY!

Sorry for the lack of updates .... but no news is good news around here!  Since today is the anniversary of the diagnoses I thought I should say something!!! 

We have been busy since the last update with all normal things... even a few ( actually more than a few...) trips to our pediatrician.  All three have had the same "crud" that has been going around lately--   Grier was funny after the 2nd trip-- he asked me WHY.. are we going to THIS doctor now and not Dr. McMahon!-- I explained to him that Dr. M looks at unhealthy cells and Dr. S looks at his throat, eyes and ears and tries to figure out about his cough-- That was enough of an explanation for him!  I am just glad it was THAT doctor-- :)  

I am not going to write a long update about this anniversary--- because it is not something I really want to look back on--- I read last year's update and I am not going to down memory lane again-- Year 2 has been just as busy as Year 1 but in a different way-- Since July our trips to NYC became more spread out and allowed us to catch our breath!  Yes-- I think I survived on adrenaline for 18 months!  

During our "off" time from scans and treatment we concentrated efforts on finding a cure with the help of most of you-- donations were made to the band of parents, cookies for kids cancer, Children's Miracle Network and Curesearch.  Thanks to everyone that helped with each of those fundraisers.  Certainly the favorite at our house was the bake sale-- who knew one could raise $2000 selling cupcakes and cookies in your front yard.  And I have to mention Charlotte's first Milestone walk -- The Go Grier Go team was amazing and raised over $10,000-- and 95 cents of every dollar of that goes to Pediatric Cancer research.  The whole event totaled over $100,000-- Really good for a first walk in Charlotte.  Hopefully we can double that this year!

We also had some great trips... 4 different beaches and Disney for Thanksgiving-- 

But the most important thing we have done is practice being a "normal" family of 5-- Grier loves going to school and he has developed some great relationships away from home-- Hayes and Grace continue to do well in school--- yes.. I was waiting for the "fall-out" from our chaotic year but we have not seen much- ... we have some "tween" issues but isn't that "normal"? Other than going to NYC and "living" in the Ronald every three months-- we have been pretty normal!

I was going to put together a "video" of the past year BUT I can honestly say I need to do better with taking pictures--- I took all the pictures from each blog post and tried-- but it is not so great-- I need a tutorial!!

We are headed back to NYC on the 27th of April for a work-up-- To say I do not fell the stress already would be a lie-- but I am learning to deal with the fear.  I was talking to another cancer mom and we were trying to think of how you " celebrate" the anniversary of being told your child has cancer-- paper.. wood etc.  She asked the question on Facebook and got some interesting answers!  I hope that is something no one else will hear but the facts are someone is probably hearing right now-- more has to be done... I was one that thought it could not happen to my child and here I am fighting the fight--- And we are going to win this fight!-- Grier is very competitive so with his drive and personality we will keep searching for ways to keep him healthy and happy like he is he is right now-

The next big day to celebrate will be Grier's 5th birthday-- he is already starting to think of what kind of party he wants-- another milestone-- his first friend party!!  June can not get here fast enough!

So as year 2 comes to a close we will continue to press on looking for a cure and continue living---Thanks for coming along with us on this journey.  I know I have posted this poem before but I thought it was the perfect poem for this kind of day.

I HOPE...

I hope you never have to hear the words, 'Your child has cancer.'

I hope you never have to hear, 'The prognosis is not good.'

I hope you never have to prepare your child to undergo radiation or chemotherapy, have a port surgically inserted into their chest, be connected to IV poles.

I hope you never have your child look at you with fear in their eyes and say, 'Don't worry Mommy, everything will be okay.'

I hope you never have to hold your child as they vomit green bile.

I hope you never have to feed them ice chips for lunch.

I hope you never have to watch the 'cure' you pray for slowly take away their identity, as they

lose their hair,

become skeletal,

swell up from steroids,

develop severe acne,

become barely or unable to walk or move,

and look at you with hope in their eyes and say,

'It's going to be okay, Mommy.'

I hope that you never have to stay in the hospital for weeks, months, or years at a time, where there is no privacy, sleeping on a slab, with your face to the wall, where you cry in muffled silence.

I hope you never have to see a mother, alone, huddled, in a dark hospital corridor...crying quietly, after just being told, 'There is nothing more we can do.'

I hope you never have to watch a family wander aimlessly, minutes after their child's body has been removed.

I hope you never have to use every bit of energy you have left, with all of this going on around you to remain positive, and the feelings of guilt, sorrow, hope and fear, overwhelm you.

I hope you never have to see a child's head bolted to the table as they receive radiation.

I hope you never have to take your child home (grateful but so afraid) in a wheelchair because the chemo and radiation has damaged their muscles, 35 pounds lighter, pale, bald, and scarred.

And they look at you with faith in their eyes and say, 'It's going to be okay Mommy.'

I hope you never have to face the few friends that have stuck beside you and hear them say, 'Thank God that is over with,'...because you know it never will be.

Your life becomes a whirl of doctors, blood tests and MRI's and you try to get your life back to 'normal'.

While living in mind-numbing fear that any one of those tests could result in hearing the dreaded words...

'The cancer has returned' or 'The tumor is growing.'

And your friends become even fewer.

I hope you never have to experience any of these things...Because...only then...

Will you understand...

(author unknown)