your turn.....

Today... I guess was the beginning of a new routine!  I will not lie and tell you that the mornings don't come too soon... ugh! The 7:30 start time for school is going to be painful....  Grier got up fine this morning and ate a little... he is just not quite awake.  I ended up taking them to school and as we were driving, Grier informed me that he is fine walking in by himself--- actually he was more than fine with it-- he KNEW where to go!  I was ready to walk him in on his first real day but also thrilled that he wanted to do this by himself.  I also wanted to tell his teachers about leaving early but Grier said he would tell them and also would give them the note--- really could not argue with him... so off he and Grace went into school--solo!  I came back home to get Hayes off and had a few moments of quiet before it was time to go back to school to pick him up.  Grier's class was on their way to lunch as I got there so I scooped him out of line and of we went to the clinic for chemo!  Really that does not even sound right!!! Chemo went just as well as his half day of kindergarten...  I still can not believe the scenes that play out in the infusion room.... other kids getting sick behind the curtain... blaring TVs and Grier blocks it all out--- not me.... today I was having a harder time with the "gag reflex" -- just trying to tune out the surroundings while I was tracing NFL teams!!!!  We were home by lunchtime.... and before we knew it the bus was dropping Grace off... homework had started... Hayes was home... baseball etc.... Chemo was a distant memory for Grier.... After dinner, Grier did his homework and went to bed... He is so tired.  I would be too-- he has been non-stop since the bus came with his friend.  He was eating corn on the cob tonight and we had an emergency... he bit into the corn and one of his loose teeth became even looser but did not come out--- He was screaming.... and at first we thought he was going to "blow" but after he pointed to his tooth we knew he was going to be OK.... I wish the tooth had just come out because he is so worried about it-- and he says it hurts!


Tomorrow is September 1st-- I wrote earlier that it was Childhood Cancer Awareness month-- and it is... for most of you.  I am aware 24/7 how much funding children cancers do not get compared to other cancers--- there is not a moment that I don't think about it --- I am not alone.... the other parents in the "club" I am in think about it 24/7  too- My friend, Gretchen said it best- "Why don’t people understand that what’s happening to my precious child could be happening to their child just as easily? We should all care and get involved and demand more for our children and be outraged that we’ve accepted this as a nation.”     That is about the only time I ask "why"..... I can not tell you how many times I have been emailed or called and told "I have a friend whose child has been diagnosed with...... ( some kind of Pediatric Cancer)"--- today it was Neuroblastoma.  Yes, Friends... it happens everyday--- somewhere 46 families a day are told that "your child has cancer"--- there is no magic age.... under 20 is considered pediatric cancer.  Scary.. I know-- I heard those words.... actually 3 times and it does not get easier like I thought!  I have seen the "talk" in the hospitals--- and the looks on the families faces are the same-- I have overheard conversations on the crowded NYC elevators... kids being told that you can't go to college right now because they have to start chemo--- I was also in an elevator when a little girl that was grace's age, was told about her treatment plan-- her leg had been hurting a LONG time... thought it was due to sports but turns out it was cancer.... obviously they were talking about her having babies one day... and the little girl barely understood she had eggs much less they needed to save them-  


Pediatric cancer remains the number one disease that claims the lives of our children. Each year cancer kills more kids under the age of 18 than asthma, diabetes, cystic fibrosis and AIDS combined. Yet pediatric cancer research is grossly underfunded by the government and largely ignored by pharmaceutical companies. Imagine being told that your child has a 30 percent chance to live and that the reason why is directly related to how little money is spent on research.  


so, what are you gonna do to help? I hope you do something this month to make a difference... I am going to while Grier is getting treatment AGAIN... so if I have time I bet you do too~

check out gogriergo.com for pictures...

Chemo started again today... and it went as it should--- the whole visit was almost 3 hours from door to door--- soooo lucky I only have 5 minutes to get to the clinic.... some people drive 45 minutes to several hours to get care-- another reason to stay put!  His checkup went fine... he actually let someone besides Kristen access his port... and when the nurse came in.. she even asked him if it was "ok" if she accessed him.... I was waiting for the whisper of "MOM" ( meaning .. you tell her)... or the NO but he just said nothing.  Counts looked great... We actually had a new doctor today that I had only met once before while she rounded when we were inpatient.... I really like her... and she did her fellowship from MSKCC-- just an added bonus ~  The infusion room was pretty calm and we were there with the same family we have shared the room with for the last few times... Pharmacy had the chemo pills so they were given in the clinic and so it just saved a trip to the pharmacy and another co-pay!

Other than that he is good... we have had a " I run to the can" moment as soon as we came home.... but immodium is the drink of choice now-- trying to stay on top of it....

Tomorrow is the first REAL day of Kindergarten.... all the kids will be there... so I have gone back and forth about the best way to get him to school and when to get him to the clinic for chemo.... I think he is going to go in the morning for a little while... and I will pick him up early and take him for his chemo.  I think this will be the best just in case we have "side effects" after the infusion.... at least he will be home for the afternoon.... I would say to "rest" but he spent over an hour today playing soccer in the yard...

Wednesday is September FIRST-- the first day of pediatric cancer awareness month... You will be tired of reading it by the end of the month--- Just Kidding... Lesa has 30 places of business that are going to "GIVE" to cookies for kids cancer in honor of childhood cancer awareness month.... 30 days for a CURE!!!  All money donated will be for research for children-- Please plan on taking your family to a few or all of these places on their designated day.... We will be there.... I guess that is one way to get out of cooking for almost a month!!

Did you know that…?

• Second only to accidents, CANCER is the number one cause of death in kids.     
  
  
  
• Cancer kills more children than asthma, diabetes, cystic fibrosis, and AIDS combined.     
  
  
  
• Over 12,600 kids every year are diagnosed with some form of cancer; 25-30% DO NOT SURVIVE.      
  
  
• 1 in 334 children will be diagnosed with cancer yearly.     
  
  
• 60% of child survivors will develop at least one chronic health condition (e.g. secondary cancers, major organ damage, developmental problems, cognitive delays)      
  
  
• Despite these numbers only 3% of the budget from the National Cancer Institute goes towards Pediatric Cancer Research.     
  
  
• The same is true of nonprofits. Despite picturing children in their ads & using children in fundraising events, the majority of the well known Cancer charities give less than 2% to Childhood Cancers Research.

WHY IS SEPARATE FUNDING NEEDED FOR CHILDHOOD CANCER research? CANCER IS CANCER RIGHT? Wrong!

• Pediatric cancers are very different from adult cancers in their biological make up and molecular structure. Their causes remain unknown and their treatments are very different.     
  
  
  
• Compared to the understanding of adult cancers, little is known about what chemotherapies work, what cells mutations are involved, etc. for childhood cancers.     
  
  
• Not enough is known about what is most effective for children’s cancer, so they are bombarded with high doses of many types of chemotherapies     
  
  
• Children get more chemotherapy, for significantly longer periods of time, at higher doses, than adults.      
  
  
• There has only been ONE new drug developed in the last 20 years for pediatric cancer, ONE.      
  
  
• Childhood cancer occurs regularly, randomly & spares no ethnic group, socioeconomic class, or geographic region.

* Information taken from: National Cancer Institute, CureSearch, & Candlelighters. Statistics above refer to the U.S

I am asked ALL the time--- what can I do to help??? Well... this month do something to help raise awareness.... there will be lots of opportunities here and if you don't live here... have a bake sale, give blood, order cookies from polka dot bake shop ( they will ship them to you), wear a yellow ribbon, think outside the box and make the gold ribbon as well known as the pink one!

September is Pediatric Cancer Awareness Month---
Please help us raise some $$ and awareness for kids currently fighting cancer and the ones not yet diagnosed-
These wonderful Charlotte, NC businesses have stepped up to the plate and offered a percentage of the days proceeds to Cookies For Kids Cancer.  Cookies for Kids Cancer donates 100% of its donations to the dedicated scientists that are trying to find a cure and better treatments for our children.... Please come out and support this VERY worthy cause-

Bass fishing with Hayes--- 

Look what I caught!

I HAD to replace my Jake jersey--- :)

I'm a Kindergartner Today!

My backpack is HUGE!

5th Grade here I come-

The excited 7th grader~

Summer is officially over and school has begun for our house--- 2 out of 3 are very excited... and I am sure Hayes is too but just does not want to show us too much!  We had a very busy weekend last weekend... and the boys had an awesome time fishing on Mountain Island Lake with their own fisherman "Carl"-- lots of fish were caught and Grier only "almost" fell out of the boat once--- at least that is what he said and Jeff did not disagree.

Grace had a good time back on the soccer field -- it was fun to watch her do what she loves to do-- but by Sunday we were melting it was so hot!  The panther game was fun... Grier made his first stop in the team store-- he told us he could not wear a Jake jersey to the game because he did not play for them anymore... and he could still wear it if he was going to a Brown's game... Oh my gosh... he can always talk his way into a new jersey--- this time he spent his own money which is always fun to watch... it is hard to part with those dollars sometimes.... 

Sunday night we did have a change in plans and our friends could not fly here so we did not get to see them or Jack Johnson... that would be neuroblastoma's fault- ! Our friend Liam ,needs every one's good thoughts, prayers, good vibes as he continue to battle the beast.  It is really scary how quickly things can change...

The beginning of the week we had lunch with friends, went to the doctor and had many school activities.... all were great-

The doctor visit was a complete surprise-- his counts looked great and he is ready to start chemo again on Monday the 30th-  He also looked great on his exam and was silly as ever--  I always read way too much into what is said... and how long he looks at him... clearly I should know by now looks don't always matter on the outside-- it is what is inside that I worry about and a daily CT is not good so I should stop thinking about it-- I can feel scanxiety creeping in--- we will go to NYC 14-21 days after we start chemo this Monday-- It feels like it has been forever since Grier and I were there and I got called in to get the "relapse news"... May was really not that long ago... I am really anxious to hear what they suggest-- 

Grier met his teachers and we are looking forward to a great year.  One of Grier's teachers worked with me at Park Road Elementary (long ago) and it made me feel great to see a familiar face--- The connections I made from those years at Park Road have brought me great comfort during our WDS days and at Elizabeth Traditional-- now I can add Selwyn to the list.... 

Today was his big "first" day (his school does a staggered entry)... and he was excited... he did not say he was nervous--- and if he was he would have let me know :)  He told Grace last night before he went to bed that he would "see her tomorrow at Selwyn"- I guess he forgot he was going to ride to school with her!  I was ok this morning-- no tears-- just a smile and a wave good-bye--as Jeff took Grier and Grace to school-- I really thought it would be better to separate from him rather than me and it seemed to work out well-- whew! It was great to get to this milestone and know how happy and prepared he was about it.... I have done so many things in the last three years that were so much harder than letting him go to kindergarten--- so it was a good day for me to see him reach this point.. It certainly made me realize why we have fought like hell the past few years... and we will keep fighting..

He just got off the bus.. he said he had a good day.. so we will have a few days off... and start going everyday next Tuesday... well, that is if chemo's side effects don't get the best of him.  

That is it for the update... more to come next week as he fights through another 5 days of chemo-- who knows how we will deal with school days too-- one day at a time, right?  I am going to worry about that later... today I am waiting to hear all about kindergarten and going to finish filling out TONS of forms for the threesome!

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or Fight Like Hell." - Lance Armstrong

Oh WOW--- I am still in PIT STOP mode and all of a sudden everyone around me is racing to the finish line~

Oh WOW--- I am still in PIT STOP mode and all of a sudden everyone around me is racing to the finish line-  yes... I am talking about summer coming to an end.... I am not sure how that has happened... actually not even sure summer vacation happened at all--- but school is right around the corner.... and for once I need some more time-- ( Karen.... you just read that right.... !)  We were just starting to enjoy the lazy days of summer-- sleeping late and playing with friends... and doing nothing by a schedule... doctors appointments had even lessened and we were getting a few days off from that medical routine we were so used to... and all of a sudden the phone starts ringing and teacher assignments are done and school activities have started--  AND I am not ready!... There were a few things I wanted to happen before the first day of school.... I wanted the 5 o'clock shadow on Grier's head to be as long as a summer buzz.... and I wanted Grier to be done with the last week of chemo --- it has been 3 years since we had a normal first day of school.... he was "just Grier" and an excited 2 year old to do "carpool" like his brother and sister.  When he was 3 he did not make it to the first day of school... he did some visiting in April and May.... when he was 4 he was present and looked as healthy as everyone else .... and then last year when he was 5 he looked as healthy as everyone else too but had to have his 2nd thoracotomy on what was suppose to be his first day of school-- This year will be a little different too-- he will get chemo the first real week of school... we are going to try to go to the clinic in the afternoon... so we can keep him on some sort of routine.... or at least that is the plan right now--

September is coming just as fast as the first day of school.... and September is Childhood Cancer Awareness Month--- I still have the Gold Ribbon on Grier's stroller that we were given in the hospital last September in NYC--- There are a few exciting things that are going to happen in honor of Grier's fight... we are lucky to have some great friends that have organized these upcoming fundraisers for Cookies For Kids Cancer---

The first fundraiser is being sponsored by our wonderful friends at Polka Dot Bake Shop--
They are selling a bag of Sugar Cookies in honor of Grier's fight.  They will donate the proceeds from the sugar cookies to Cookies For Kids Cancer during the whole month of September.... You can pre-order packages.... I have enclosed the order form below--- or you can go by the store at Parke Towne Village and place your order.... This is the note from MacLean that we would love for you to copy and paste and help get the word out to friends and family-

Call 704-523-5001 or email cupcake@polkabakeshop.com to place an order in advance...

They will be package 4 to a bag, sold at $5.99 and $4.74 will go to C4KC!

The 4 cookies will be in a clear bag, with a C4KC label and gogriergo label, then finished with a yellow pediatric cancer ribbon! There will also be a donation jar in the shop!!

We will start selling them Tuesday August 31^st  until the end of September – but we are accepting preorders now.

We will have them in the store to purchase or people can order them! We can even ship them!!

I want these to FLY out the door – so blog and facebook and tweet and spread the word!! (even forward this email)

Thanks you for all that each of you do!

Love,

MacLean

Event Coordinator

Polka Dot Bake Shop

The second fundraiser is from Whatever ! --- You can buy a bottle cap or a glass tile necklace with the cookies logo on it... $10 from each necklace will donated to Cookies to fund research that will help children through funding promising clinical trials--- They also have done a Go Grier Go bottle cap....  the proceeds from the GGG necklace will go to GGG to help offset the medical and travel expenses that it takes to fight Neuroblastoma.  These necklaces can be ordered from the whatevercrafts.com website AND they will be at Alphabet Soup for all that are local and want to go by and pick one up--- They should be in the store by Friday, August 20th-

Alphabet Soup Monogramming

Morrocroft Village Shopping Center

3900 Colony Road   Suite B

Charlotte, NC 28211

704-554-1616

www.AlphabetSoupGifts.com

The third fundraiser will occur everyday during the month of September.... we are hoping to have 30 businesses in the area pick a day in September and donate a percentage of their sales to Cookies for Kids Cancer all month long--- if you know of a business that would like to be a GOOD Cookie for a day please email Lesa Helbein lesa.helbein@gmail.com

Hello again ALL of you 'good cookies'!  

As many of you may know, September is Pediatric Cancer Awareness month.  In honor of our sweet friend, Grier Christenbury, I would like to challenge you to help me find 30 businesses that would be willing to donate a percentage of their sales to Cookies for Kids' Cancer for a given day of the month.  I have a few businesses that are already committed to help us in our efforts, but I would LOVE IT if we would get 30 businesses to participate...one for each day of the month!:-)  Can you imagine the kind of 'dough' we could raise for CFKC...without even baking a single cookie?:-)  Please be a 'good cookie' and help make a difference in the world of pediatric cancer research, but most importantly, help make a difference in the life of a child.  Please contact me at lesa.helbein@gmail.com if you know someone who has an interest in participating.

 Let's take a bite out of Childhood Cancers!  GO GRIER GO!

Thank you,

Lesa Helbein

Volunteer,

Cookies for Kids' Cancer

WOW-- this blog posts reminds me of how much support we have even after 3 plus years of fighting NB-- THANKS....

This weekend is going to be chocked full of activities.... Grace will be back on the soccer field... The boys have been invited to go fishing with some "pro's" on Mountain Island Lake... and Grier is very excited to see the NY Jets play here in Charlotte against the Panthers... the rest of us will be loyal to our home team... :)  We also will get to welcome our friends, Liam, Ella and their mom, Gretchen (my mentor and hero) to Charlotte.... Liam is going to get to see his favorite singer Jack Johnson!!! It will be fun to see them on our "home turf"--and not in the hospital in NYC~It is amazing to think that only 2 years ago Gretchen and Larry started Cookies for Kids Cancer and since then there has been an amazing amount of awareness and money raised for pediatric cancer and 100% of the money raised has gone to pediatric cancer research with no overhead costs.... 


I would love to see the bottle cap necklaces.... so send me a picture and I will post them...

Leila and her new necklace :)

MONDAY

Clinic went well this morning.... His counts are great... so they must not have dropped yet.... the only thing that was troublesome was the BIG D--- ugh.... it has decreased his appetite and made him lose some weight... The funniest thing was he told Dr. M that he was "allergic" to his new GAP underwear-- He asked him why... and he said they gave him the big D-- NICE!!! Dr. M laughed a little and told me to keep him on the Imodium.... it is harder to play catch up when the chemo D kicks in-- NO KIDDING!!  I am trying to get him to eat again.. and Grier said mom this D makes me not hungry.... :)  So... I have bribed him-- not surprised... are you??? He wants to go on a lunch date to Which Wich  so I told him I am not calling until he starts to eat again..... he said... OK, OK, I will eat!  I will let you know how it goes....

Our weekend was pretty normal.... and this week will be the beginning of getting back into a Fall routine...  Thursday we go to clinic again to check his counts... Hopefully all is still go enough to just check and leave-- He has been opting for a finger stick so I am sure Thursday will be the same!

TGIF!

FRIDAY---- and he is done with chemo!  I am so glad... The week wears me out... not really physically but emotionally--- I do all the worrying for him and make it as normal of a day as possible... and by Friday my shoulders are tight.... my head hurts and I have not slept well... but that is how I want it -- I don't want him thinking about it-- and I think that is why he is so resilient.... well, I can hope!

His clinic day was the same except he had me laughing a few times.. probably because I was shocked at what he says sometimes.... Today he was talking to our nurse... she asked him how he was feeling and then asked me if he had any diarrhea.... I said no... and he said... YES, I did.... then the nurse said maybe I should just ask him...MAYBE-- obviously I don't know-- Then they were talking football and chatting and he said yes to something and then asked her if she was a mind reader??? I said... what did he just say?? She laughed and commented how he used to not talk at all-- I think he has warmed up--- :)  He also joined another little boy and played a jumpin' monkey game.... the hour went fast and we were out of there... I was hoping to not come back until Tuesday or Wednesday but he has to be there on Monday to check his counts....
As we were walking out to check -out- Grier told me that Paula was "the best" at taking out his needle in his port-- so I said... Grier run back there and tell her while I make the next appointment... and he did.... I hope that made her day.... those nurses in the clinic have HUGE hearts to do what they do everyday... the office is crowded and as a good friend says... it is a BOOMING business~

Grace came home from a fun week at the beach and Grier was really excited....  I got to escape to the Toyota service place for the 2nd Friday in a row... and MacLean came and stayed with the threesome.... I am so excited I can leave him when he is not feeling 100%--- there are only a handful of people I would do that with...

He has a few side effects.. and the big D has hit a little tonight but it is manageable--- It doesn't stop him and I am not surprised.... nothing really does these days....

I have told a few friends that I should write down the dumb things people say to us daily--- and I should just so I can remember them.... Today, while we were in the elevator--- a man looked at Grier and said he had a nice HEAD--- really??? That was a first for us--  That is when I want him to come back with one of his comments .... but he just looks at them!

This has been a LONG week.... and I am looking forward to the weekend...

following his lead...

Today was a good day!  Grier woke up and said he did not feel dizzy like he did yesterday.... He got dressed... packed his markers and NFL spreadsheet and was ready to go to the clinic.  He wanted to go get a "jelly biscuit" before we went to the infusion room so I said OK, if you feel like it-- and he did!  He ate half and was ready to head up to the 6th floor.... he led the whole way.. as we walked into the clinic he said MOM, they said to come on back so I followed him to the infusion room.  He picked his "spot" and took out his stuff and started coloring while they got all his chemo together and hung it on the IV pole-- HE has the routine DOWN~ He even asked to be unplugged from the wall and pushed his IV pole as he visited Sharon, Paula, & Molly...

Basically he felt better today.... but I was a little gun shy about taking him anywhere without the pink bucket--- He wanted a doughnut when we left the clinic and I said we would have to go to Harris Teeter to get one... and other "things" on his list-- and he said... NO I don't want to go-- Then I said well... Let's order our groceries online and go pick them up and he was so surprised that you could order groceries on the computer.... he sat with me as we ordered from HT---- Yes, he got his doughnuts and has eaten several today :)

He was funny today as he took his 3 chemo pills.... he was shaking the capsule.... and said sounds like a little rock in here--- I did it and he was right--- he then popped them in and swallowed--- after he got them down he asked me what would happen if he did not take this medicine???   Hmmm... that caught me off guard but I said... you have to take it... that is what the doctors said!~

Tomorrow is the last day--- I can't wait to tell him it's Friday-- I hope he starts singing....but I think he will miss his routine a little-- Not sure what next week will be like since we have not done this before.... He will not be thrilled about taking the needle out of his port--- but once it is out he will be OK---

Wednesday........ 3 days down.... and the side effects started today :(

Grier woke up this morning at 10 am--- not surprised since He was up late last night.  We headed to the clinic a little later than I wanted to and he was not hungry.... maybe that should have been my 1st clue.... but I brought some things for him to eat at the clinic... and he drank a drink on the way.

The infusion went fine.... he colored a ton of logos and had all the nurses and child life chatting..... He told them he went fishing last night and they asked if he caught a fish??? He said... NO, but I caught a frog... :)
The chemo finished and he was ready to go.... he called Hayes to see if he wanted lunch from Chick -Fil-A at the hospital -- sweet Grier always thinking about Hayes.... so we took the elevator downstairs and ordered Hayes lunch.... Grier did not want anything (clue #2)-- As we were headed out of the chick-fil-a he started to throw up-- so I dropped everything to grab a napkin...??? I needed our pink bucket!-- the napkin did not work well so I picked him up and held him over the trash can as he violently hurled.... it seemed like it was forever but I am sure it wasn't--- after he finished I got him cleaned up-- and me :) and we headed back upstairs to pick up the rest of the chemo pills they owed us-- and then headed to the car--  Grier was fine after the episode -- I was a little pissed that no one offered to help as I held Grier over a trash can-- but I got plenty of the smile/smirk's as I held him....

He seemed a little better when we got home.... I gave him a quick sponge bath since he is still has his needle in his chest... and changed his clothes... and gave him another anti-nausea med-- He needed to take his chemo pills but I opted to wait just in case he was still feeling bad.....

MacLean came to watch the boys while I met Lesa and Robbie for lunch.... I have a whole blog to write about the new GGG bottle cap necklaces that were made for GGG and CFKC... another time... I want to get all the details right...

that is it--- I am hoping for an early bedtime.....

Tomorrow I know I will have the pink bucket with us as we go to clinic--- Live and Learn...

pictures are taken in the "confusion room"--- it is really the INFUSION room.... just a pod of chairs where the kids sit in GIANT chairs to get IV medicine and blood products-

Day 2 was uneventful... well.. (kind of)

Grier was in his "zen mode" as we left our house to go to clinic--- He always seems to focus on ONE thing... and we are still on NFL logos right now.... that is his focus when he knows he has to go to the clinic... he starts thinking about what team he wants to get Sharon or Molly to print for him and then I trace them and he then works really hard coloring the picture.... Since we are only there for a little over an hour it has helped make the time go really fast--- Yesterday he had an added bonus in the infusion room because he knew Mrs. Campbell (the volunteer) from the WDS so he was not so shy and talked and sat at the table to do his coloring :)

The one hour infusion went well--- and the only "glitch" was the 3 pills--- CMC did not have 2 of the chemo pills he needed so he took the 100mg yesterday.... and today the order should be there so he can take today's dose and the (2) 5mg he missed from yesterday-- sometimes I just take a deep breath because it is all I can do--- I really have no control--- especially with pharmacy!  He will need to swallow 5 chemo pills today-- and tomorrow we should be back on schedule....

He is still feeling well-- or at least it is not slowing him down at all---

Chemo has started today!

Grier has finished day one of chemo-- a one hour infusion through his port of irinotecan and he swallowed three huge chemo (Temador) pills--- so far so good as far as the Big D.... and nausea is concerned!  His counts are about the same except his ANC is up to 900--- So all in all I can't complain.. he is eating and in a good mood and a stranger would probably have no idea he had chemo today.... I hope the rest of the week goes as smoothly! I will be sleeping with the pink bucket just in case....

He was ready to get his "medicine" and "fluid" today--- actually ready to take his pills too--- I had no idea what to expect so I was a little more nervous as the drip slowly went in and he swallowed the pills.... His counts should not drop to 0 like they have before since this is lose dose.... and if he had hair it might only thin....

Jumping back in to this routine even after a few days off makes me ill--- Lots of our friends fighting this battle are having a hard time right now and it is just too much sometimes and scary to know what they are going through-- low dose chemo seems to be a cake walk... strange but true!.... I know SLOW and STEADY wins this race... but the cure... or better yet a treatment that is not so toxic needs to hurry up and be found.

A HOLDING PATTERN-

Grier counts went up a tiny bit today.... tiny... is the key word! His ANC was close to the 750 minimum to start chemo--- it was a whopping 702... His hemoglobin is still not stellar... 8.3-- BUT he does have some platelets--222!  I asked to start chemo today and got the ok since he was so close.... but then came the conversation of the logistics--- The infusion is an hour each day for 5 days and he takes a couple of pills too.... but since we would be doing it on Saturday and Sunday he would have to go to the hospital and be "admitted" for the infusion.... chemo orders can not be filled until he is on the floor and then the "in house" pharmacy would begin to work on it.. ( and the SLOW train would bring it up) ~(LOTS of WAITING...) I was told to expect 6-8 hours for what would normally be a 1 hour infusion.... and I said... NO~ That is  just ridiculous to ask him to sit up there for two days.... for 2 hours of medicine!!!  Crazy I know-- Half the time I am B&*tching that he has to have chemo and now I am because we have to keep waiting---- tired of the HOLDING PATTERN.... I want to make some plans... and actually do them and not think all the time ahhh, maybe we could have gone on vacation, moved, visited friends... etc.. WHATEVER~ basically someone else's normal life....

so... we got the ok to go to Target.... clearly not my favorite task but we are going to try to start Grier on an antibiotic in hopes to prevent the diarrhea... the prescription was faxed to target and we went to get it-- after several attempts and many phone calls... the fax finally made it and they said they don't carry that drug!  I had to get back on the phone and have it faxed to the hospital pharmacy and they are going to order it for him.  Now that we are not starting until Monday it will be ok because you have to start this drug a few days before chemo.  Grier on the other hand was thrilled to go to Target-- he has not been in almost 29 days... yes I know ~because it was before the last round of chemo-- and he was waiting for his counts to be higher!!   Yesterday, he said a million times how it was not fair that his counts were low and he could not go anywhere--  and today he was actually making up a song about his counts being high enough.... crazy!!!

Other than being on a holding pattern everything else is going OK.... Grier's looks have changed a lot... I thought he was just pale at first and he is.... but he has also lost eyebrows and eye lashes..... those make a huge difference in your looks.... I was hoping to see some new hair growth soon... but none so far... not that it bothers him.... if I only had a dollar for every time someone says something STUPID about his "haircut"-- and it always happens at the CMC elevator-- really folks... a filter would be nice... He does not have the "same haircut" as the bald man implied today.... :)

We are going to make the best of the weekend-- enjoy everyone home for awhile and try to start chemo on Monday---  

REALLY??

WBC 1.4
platelets 200
hemoglobin 8.2
ANC 458

Chemo has been delayed... we were sent home due to these counts.... I am hoping Wednesday will be the day to start.. I did not want to delay it a week-- I am trying to talk them into an Observation Room in LCH on Saturday and Sunday instead of a spend the night-- since the infusion is only an hour.

ANC needs to be above 750-- and 8.2 is pretty close to transfusion...

plans change--- we know that ~just hate it...

Last week was SO normal that I decided not to jinx it--- so that is why I did not update---!

After our early morning clinic appointment last Monday, we knew Grier's counts were good... platelets were ok-- not over 100 but all else was good... It was a little like winning the world series and getting asked "what are you going to do now that your counts are up???" Our answer was WE are going to go to school!  We headed downtown and Grier went to Uptown Fun~  Grace and I hung out and did whatever she wanted to do until we picked up Grier.  Our original plan was to go to Hilton Head for part of the week but after trying to get Jeff to go and he couldn't because of work ... I thought it was going to be fun when I got there but tiring when I got home on Sunday.... and I knew this week was going to be exhausting enough without recovering from vacation... :) So....Grier went all 5 days to Uptown Fun... Grace and I had a nice week being together... shopping for a bike... going to lunch with Hayes and getting her ears pierced... I can't remember the last time this has happened....

Hayes left for Cooperstown , NY to play baseball for a week on Thursday... He is having a good time and his team is doing well... I wish I could see him play a few games-- but missed it last year due to our NY scan trip and this year just couldn't plan it last minute...  I can not believe it has been a year since the first relapse--- it has been a fast year... we were in NYC last year during this week with Anne.... trying to show her around to our favorite NYC places at the same time working in all the appointments not knowing the "something" was about to show itself on the CT for the first time.... And since that week a year ago, we have not had a break.. and even a second relapse in the mix while on treatment... ugh!

This week we will leave "normal" and re-enter the clinic Monday-Friday and go to the "confusion" room ( that is what Grier calls it) aka the infusion room--- and Grier will receive his 12th week of chemo-- he will also take an oral chemo for the first time so I am anxious to see how he responds to it... if any side effects.  I told him as we were walking to see the cyclist ride the "24 hours of booty"- a bike ride that raises money for cancer research and awareness  --www.24hoursofbooty.org...
he was fine with it... and thrilled to hear that we were going to the infusion room.. he is far more adaptable than I am .... I am still a little apprehensive about doing two more weeks of chemo.... I have asked a million times about chemo induced Leukemia and the answer I get is YES.... it is a risk but they will not know if it was these two rounds or the previous rounds... IF it happens no one will know which round caused it... so we just hope it doesn't happen... and that these 2 rounds stay ahead of the next relapse until we try something else.

Last week was full of normal....  trips for school supplies and a Clemson backpack, yoforia, watching the 24 hours of Booty, pool trips, movies, lunch at which wich, school, bike rides and playing with friends.... enjoy the pictures on gogriergo.com... !

Grier and Grace at our usual Monday morning appointment

Grier's letter from the NY Yankees and box of goodies

Grier going off the diving board at OP

MOM-- this is the "ONE " that I want to carry to school~

Grace using Grier's "magic cream" on her ears before she gets them pierced~

Grace and Grier jumping in the bounce house in Bootyville during 24 hours of Booty~