Article from Crystal Coast Parent Magazine

This is a great article that was just published in the Crystal Coast Parent magazine about the bake sale my college roommate organized in Morehead City, NC.... Kristie did great writing this article and hitting the points that are important-- Thanks again, Kristie! The pictures in the article are from our sale in Charlotte... we tried to get the Charlotte Observer to cover it BUT they gave us the run around as they have done with every request regarding the childhood cancer awareness month, Cookies for Kids Cancer and the CURESEARCH milestones walk ( They do not think pediatric cancer is important enough to cover!)-- OH Well!!-- at least Morehead City gave it some press! If you click on the picture of the article it will get bigger so you can read the entire piece-

A new THANK YOU and one LONG overdue!

First, Grier is doing great in school-- he loves to tell us about his friends and teachers. He went on his first field trip to Discovery Place-- All normal things for him and we are so glad-- He is looking forward to Trick or Treating-- He does not remember going before ( he was only 2) but we have talked about it enough that it will be fun to watch him enjoy Halloween-- It is hard to believe the 1 year anniversary of his HUGE surgery is in a few days!! On the medical front, we may be taking his mediport out !! We got the OK from Dr. Kushner in NY and he said the sooner the better! He said it could be done in NY or in Charlotte-- so we will start the process in Charlotte-- I know that if we were in NY it would be done quickly in a procedure room but I am not sure what it will entail here-- I just hope it does not require an admission to the hospital-- We are taking it out because we are not using it often enough to warrant the risks of having it in (ie. infections)-- the only downfall will be having an IV for all blood draws-- but hopefully he will handle that as well as being accessed-

Since all three are in school -- I have stayed busy trying to help organize the CureSearch Walk-- I have decided that when I do get a "real/ paying job"-- it will not be in fundraising!! As much as I love to hear the words.. "yes, I would love to help"--- I can not stand the No's! And lately that is all I have been told! I know the economy is bad-- trust me.. I know --BUT I also know cancer does not care! And my scale of BAD is so skewed by the words "your child has cancer" it is a little different - So, I go full speed for awhile-- then I take a break and get energized and go full speed again because of something good I hear from some of you---!

Those good things have been happening for quite awhile-- some are things I did not ask anyone to help with -- they just decided to make a difference on their own by using Grier's story. John Cantrell recently completed an Iron Man all the while raising a lot of money for pediatric cancer research! He has worked on this for a long time and I could not be more thankful!!
Everyone knows about the Cookies for Kids Cancer bake sale we had-- but what you do not know is that I asked another friend if she would have one too-- She not only had a successful bake sale but her church in Morehead City, NC decided they would partner with the idea and use it as their mission project and kick it off on the Sunday that the children led the worship-- So many great things came out of that day in Morehead City at First Presbyterian Church. The whole church family learned about the need for more funding for children fighting cancer as well as coming together to bake cookies in their Fellowship Hall to sell at the bake sale! Both worship services were about children including songs and sermons-- and a guest speaker, 4 year old, Grant who told why they were baking cookies and told the congregation about Grier! I heard they want to make it an annual event now!

This is from Kristie on her experience with the bake sale---

The children had a fantastic day on Saturday baking cookies and making their "cookie pots"! The Children's Sabbath was just wonderful with all the gold ribbons throughout the church and the message Suzy gave was remarkable! I'm forwarding you a link to the church website so you can hear it with your own ears. The way Suzy gave the message of seeing God through the eyes of children, children's cancer awareness and our responsibilities to all children was beautiful! You will be amazed by the personal connection Suzy has with St. Jude! I hope you will each take a few minutes to listen to it. I promise it's worth it! The website is www.firstpresmhc.org. If you click on "Recent Sermons" the audio is available today.

I found out yesterday that the article I submitted to the "Crystal Coast Parent" Magazine will be off the press next week. The article is about Cookies for Kids' Cancer and encouraging people to host a holiday bake sale. I was so pleased to find out it made the cover of the magazine! The magazine will go out to over 16,000 readers in eastern North Carolina. I hope the article will do the organization justice! At least there will be that many more North Carolinians made aware of the shortfall of funding for pediatric cancer and they CAN make a difference!

And that leads me back to talking about the CureSearch Milestones walk--- The Go, Grier, Go team is 87 members strong at this point and we as a team have raised more than $10,000! I still would love to hit my goal of 100 team members.... some of the concerns I am hearing is that the fundraising goal is set at $200 per walker-- please do NOT worry about this-- Also, this walk is a few laps around Freedom Park's lake-- not a long distance so this should be a family event for all levels of athletic ability!!!

That is it for my overdue update-- My favorite part is that the medical issue is NOT the biggest deal right now -- I think that would be finding a cure !

We made it home -- I can not believe how much we did this morning in the wee hours before we left for the airport-- packing sheets, cleaning and getting ready is more than most can handle and we did it on almost NO sleep! Our car picked us up from the RMDH-- and took us to LGA-- we were so early the breakfast places were not open yet-- except for one and it had a line with 30 people-- we had plenty of time and waited a little-- nothing else to do at that hour- We boarded our full plane-- and made it safely home- Grier slept the whole time on the plane and woke up saying "that was quick-- we are already in Charlotte!"-- He was ready for the day--- I took him to school and he was so happy to be back in his routine- I can not believe how well he does transitioning between NYC and CLT-- I am also shocked that he keeps going and going even after 4 bone marrow aspirations done less than 24 hours ago- Amazing... most adults would be down for the count for days!

I went to meet with the CureSearch Milestones Walk ( www.milestoneswalk.org) Committee while Grier was at school-- I can not believe we are 5 weeks away from Charlotte's 1st Childhood Cancer Awareness Walk-- We still have a long way to go to make this a HUGE event-- we are looking for sponsors-- your business can sponsor a marker for $500-- these markers will be placed around the lake at Freedom Park-- ( A huge thanks to A&K painting, Schattenfield Law Firm and Lowe's Motor Speedway-- they answered my plea for sponsors awhile ago-- ) We still need more! We are also working on other exciting things for the walk so you will not want to miss this event-- There is a team Go, Grier, Go!-- Right now we have 78 people on it -- I am still waiting to reach that 100 mark!! It is a $10 registration fee-- please register ASAP if you plan to walk-- it will help with the planning of the event-

During the meeting, my cell phone rang and caller ID said MSKCC-- I was a little nervous to answer because I thought it was too soon to hear anything else-- I was told that Grier's test show no signs of NB-- so I was relieved and thrilled- This will give us another 90 days in between the next set of scans-- And that covers the HOLIDAYS!!!

Thanks for all the thoughts and prayers this week-- And to Susan Shimp, my mom, and Jeff's parents for helping with Hayes and Grace this week-- Give me a few days to recover and I will update again!

We are done with all 5 scans--- I am not sure I have ever been so worked up about a work up !!  Sleeping has not been easy for a week or so!  We did hear results from 2 tests today... the MIBG was clear and the MRI ( of the brain and orbits) was clear-- That was nice to hear this morning as I put him on the table to have his bone marrow tests done-  We will hear next week sometime about the other 3-- I am relieved to say the least--  He did great all week with the waiting, anesthesia,exams etc.  And there is no doubt we are at a wonderful hospital great nurses and doctors-- 

We are headed home tomorrow and Grier is very excited-- Every morning he asks if "tomorrow is the day we were going back home"-- And I was happy to say "YES" this morning-  We are going to try to make a flight at a crazy early time--  Grier may even go to school if he is up to it-- Right now-- he is planning on it! And he is planning on bringing his tornado that he made at the science class here at the Ronald--

I will update when we get home- and as I know more results-

The MIBG scan went fine -- I guess! We do not know anything yet- Grier woke up well from anesthesia-- so that's what I mean - Childlife came down and tried to talk us into doing it w/o the white medicine-- I asked Grier if he could stay still and watch a movie while they took pictures and he immediately got "anxious"-- I looked at her and said-- no- we will do it with the white medicine- She wanted him to come back this afternoon and "try" the CT machine-- I said maybe next time because we promised him a trip to Toys R US-- he wanted to ride the Ferris Wheel-- and I did not think it was going to be as fun to "try out" the CT machine! Some probably disagree but we have not done anything fun this trip and I was going to get him on the Ferris Wheel if that is what he wanted to do-
Tomorrow we have to get him to drink 8oz of contrast-- we mix it in a clear liquid-- I thought I would be smart this trip --I packed his favorite...wild cherry water (capri sun)-- All but one was taken at the airport-- the TSA lady said he could have 1--- well, I needed 2 to get 8 oz.-- So, we will have to venture out later to find a clear liquid for the morning- We have to be there at 10:30 for his scan and then they will do bone marrows after that-
His ears are still very red-- he is on an antibiotic 3x a day-- believe it or not this is his first ear infection- We have a make shift fridge in the tub.... a basin filled with ice!!!!! Nice huh? I did not feel like going to the over stuffed community fridge for medicine-- (3x a day)
We walked to 42nd street and 7th Ave. today--- stopping at Toys R Us for a ride on the Ferris Wheel and a new SpongeBob leapster game-- we had a nice late lunch at Lindy's-- it was good but it definitely had NY prices-- a $16 grilled cheese!!
We found out there is not a corporate angel flight for us to return to Charlotte--so I booked a USAir flight for Friday--not much choice since most were sold out and some were $600 a person-- luckily I found something that was less! It makes me a little anxious to think that with the economy like it is-- our travels to NY may be like this for awhile- I may have to stop gambling with a corporate angel flight and just book a round trip as soon as we know when we have to return. I am sure it will work itself out-- and by the looks of 5th avenue today... you would never know about the economies troubles! Shoppers everywhere--with bags!

MRI done!

We are almost done with day 1 of scans-- I am really glad considering last night was one of the roughest we have had in a while-- Grier had a really hard time settling down - which was very surprising since he should have crashed from getting up early and having a really busy day-- Around midnight, he told me his ear hurt. I kept asking him about his ears because he would cover them up and talk loudly-- and this started as soon as we got off the plane -- I thought the air pressure was bothering him-- But he said he was fine-- and told me he was louder when he covered his ears-- Around 2, 3, 4, 5, 6 he was sleeping but not peacefully-- and I started thinking about the Urgent care-- not really where I wanted to go-- we ended up waking up around 7:30 and he said he was fine-- I knew that was going to be my first question at the check-up-
We got to the PDH around 8:30-- and he made his rounds to see some nurses-- he was very shy until they asked what he has been doing at home.... He would say.. I go to school (by myself!)-- and then he would tell them that Mrs. Johnson, Mrs.Thompson, and Mrs. Winn are my teachers-- One of our favorites said-- Grier are you in High School now??-- You have so many teachers! And Grier laughed and he said, No, PRESCHOOL!-- Then he shared with everyone that he does not wear diapers anymore-- just boxers!
After all the catching up, he had his check up and guess what??? Grier has ear infections in both ears! I was shocked-- one looks really bad and must hurt-- they were shocked too because he did not have any symptoms-- He was going to start getting immunizations again but because of the ear infections we are going to wait-- A fever is the last thing we want right now--since he has a mediport. He will still get his flu shot on Thursday while he is under anesthesia for his bone marrow tests-
Anyway-- He did great with his MRI-- there was a little confusion about having him try to do it w/o anesthesia-- I told them I did not want to try on this test because it is so loud and long (an hour)-- maybe a CT-- so they called the Dr. in to give him the white medicine-
He woke up and told Emily ( nurse) that he wanted a bagel and OJ-- well-- it was 12:30 and we ended up at Lenny's for a turkey sandwich-- He can not have OJ because of the urine test that he has to do tonight!! He insisted on getting out of the stroller at Lenny's and he was very wobbly -- I caught him a few times-- and finally convinced him to sit until he was not quite so dizzy!
We are back at the RMDH house now and Grier is playing an arcade game-- we have to go back at 2:30 for the nuclear injection-
Tomorrow we have the MIBG scan-- He will not be able to eat or drink anything after midnight again-- I will break that to him later-- He told me last night that he was starving!! Can't wait to hear what he says about that again--

We are settled in NYC!

We are settled in for our first night at the RMDH-- it is hard to believe we have not been here for 3 months-- but it was not hard to get back into the groove-- There are a few familiar faces and lots of new faces-- It is again a FULL house--!
Grier decided we should go to Southern Hospitality for dinner-- Jeff enjoys the sweet Tea and Grier wanted creamed corn... aka "corn soup"-- well, in 3 months the menu has changed so he had to settle for corn on the cob! We walked back our normal path and stumbled upon a new bakery right next to the RMDH-- Grier got a pink cupcake with a baseball topper-- ! He is watching a movie and all snuggled up in a Hello Kitty blanket--- Grace let him borrow it for a few days- He is a little apprehensive about tomorrow-- I told him we had to get a picture taken at the hospital and he was fine with that until it dawned on him that his port has to be accessed to get the white medicine-- AHHH! The smarter he gets the harder this is going to be--! I hope he shows the real Grier tomrrow at clinic-- he has been so funny lately-- His new favorite show is Fennious and Ferb--and he is saying things just like the show!

Jeff is busy watching baseball on the 1 TV--- I may go crazy if we are going to only watch sports in this tiny room!! I guess I can work on figuring out facebook!! HA!HA!

I am looking forward to getting these tests over-- I am very anxious and I already miss our new normal--!

Candy or Shoes Off?

http://wcbstv.com/video/?id=118285@wcbs.dayport.com--
Bake sale video -- very good!!

On Friday morning, Grier asked me what airport we going to when we go to NY? He said, Is it "the one with candy" or "the one where you take your shoes off"?-- I had no answer for him at the time because it typical fashion I was waiting to hear back from Corporate Angels. After I dropped him off at preschool, the phone started ringing-- And I was feeling a little better because we were getting some sort of a plan-- We were told of a flight on Sunday night- ( we have flown on this flight a lot--) Not my first choice since our scans do not start until Tuesday but I am trying to be more flexible-- so I said I would take it--- after multiple phone calls between us- working out the same details as every other trip we have flown with CA-- I was told OK-- you are on that flight! I had to start calling our NY social worker to change our reservation at the Ronald-- we were suppose to arrive Monday-- all of those details were taken care of and I was getting in my NY groove-- I started preparing my house.. bills paid, list made, checking my calendar so I could pass off my life to my mom -- I was getting tons of things done and the phone rang-- The woman said "BAD News"-- And I knew the flight had been cancelled! Yes- I should be used to this by now-- but I was assured this one was going- I immediately got on the phone to the social worker and told her we would not be coming in Sunday Night-- I am little worried about housing at the Ronald again-- She said it is tight once again and they are working on putting people at hotels but we SHOULD be OK-- will not know until we get there- I booked a flight (one-way) on US Airways-- and we will fly into NY on Monday- I wanted a late afternoon flight so Grier could at least go to school one day but with the room situation at the Ronald we need to get there so we have some daylight to find a place to go if there is no room!
I hate this part of going to NY-- I know it would be easier not to have to worry about the logistics of getting there- I can see why some choose to stay at the Ronald long-term-
We are shifting gears a little to get ready-- You have to do things differently when you go to the airport "where you take your shoes off"! Grier is looking forward to the trip-- not sure why but he is ready to go. He did ask if he has to get a finger prick? I said I did not think so and he wanted to know if that was forever? Certainly, can not promise forever but I will try to get them to take blood from his port! He hates the finger prick more than anything in the world! So-- for him this will be a good trip without that!