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-