She loves Charlotte for how it helps kids | CharlotteObserver.com & The Charlotte Observer Newspaper

She loves Charlotte for how it helps kids | CharlotteObserver.com & The Charlotte Observer Newspaper

MAY--- WHY are you so BUSY?

MacLean and Ashley's surprise on Queens Road- :)

Here is the second part of my post...

I have been looking forward to May for awhile... not because school and sports are ending but I was excited to see how the challenge for 700 bake sales for Cookies For Kids Cancer was going to unfold... This was a nationwide challenge in honor of what would have been Liam's 7th Birthday on 5-13.  The Glad company once again rose to the occasion and said they would match up to $225,000 that bake sales raised in May.. The Charlotte area did not disappoint... we have had bake sales popping up like crazy... and businesses are supporting CFKC this month.  I already told you that just last weekend we had two large bake sales.. one on my street put on by Grier's preschool teachers and friends.. and one that lasted two days at the Fort Mill Strawberry Festival.  We have several more to come the rest of this month... I am including their fliers as a save the date for all of you... I know some of you may be sick of baked goods... BUT remember you can always go and support the sale.. make a donation and go deliver some homemade baked goods to a neighbor... a homeless shelter.. a youth group... an office -- YOU get the idea...  IF YOU WOULD LIKE TO BUY THE LEFTOVERS FROM ANY OF THESE BAKES SALES--- LET ME KNOW- Hopefully there will not be any leftovers...!

More info on Philly.... My mom has decided to go to Philadelphia with us on Sunday.. she will fly home on Tuesday.  Grier and I still don't have a set date to fly home.  For the first time in awhile I have felt good about going into this unknown "investigational" trial.... and it is all because of caringbridge guestbook entry.  Caryn ( mom of Nick) whom I mentioned a few entries ago about his 6 year fight with NB and how I admired his attitude while while fighting, signed Grier's CB page with a few words that made me feel better... She said we were lucky to be on this trial. Thanks CF that made my day to read that... I am always doubting these decisions -- just wish there was a "guarantee" 

PLEASE visit the NEW CAR WASH on Tyvola... 

WIKI WIKI--

Use the code 0513 when you purchase a wash and a percentage will be donated to CFKC-

Also buy a month's worth of washes and they will donate $10-

This is on your way to COSTCO so stop by and get a car wash on the way!

We have two upcoming days at KIXX SHOE store... and Which Which on Woodlawn... Look for details to come soon.... and wait to buy those summer shoes until the Kixx day!

Just a quick update to say sorry to all those that have called or email me lately.... I have been swamped with planning our Philly trip--- almost to the point it is comical.... Today I had a call from corporate angels... they had a flight to offer that was from Charlotte to Teterboro, NJ-- after a ton of questions to them about how they thought I should get to Philly from Teterboro I decided to take the flight.  The ironic thing was that they would not let me say "yes" and then look for transporation... so I took the leap of faith and said "yes" knowing they do not like us to cancel on them and googled travel from Teterboro to Philadelphia. Corp Angels said "Just take a train to Philly.... well, that sounds very easy and if this was any other kind of trip other than MEDICAL that might be fun... but after looking into how we were going to get to the train station... switch trains in Trenton, NJ and get a cab from the Philly train station I had to say ENOUGH! This was all going to happen late Sunday afternoon... so I decided to look into plan B -- a car service... after a few calls I found one that will pick us up in a Hybrid and drive us to the RMDH in Philly-- this is assuming we get the OK on Sunday morning that we can check in-- :) I am being very sarcastic because I find some of these helpful rules to be nothing other than annoying and stressful.... and considering we are not on a fun trip... I don't think any more stress is needed... So... so far we have a way to get to Philly.  Now we need to wait until Sunday morning to see where we will sleep~ Thanks so much to everyone that has offered contacts for the Starwood Hotels... that would have been great if there was a room available for the time we are going to be there... I knew I was in trouble when I was on the phone while they were checking all the hotels and she says.. "WHAT IS GOING ON IN THIS WEEK IN PHILLY?"- booked is the word of the day....

Besides travel arrangements I have had a million phone calls from CHOP... which is good... I have no idea where to go.... I am feeling very lost and alone as I navigate away from Sloan.  Today I answered all kinds of questions from anesthesia... and I finally just told them... Grier likes to push his own "white medicine" and I am holding him as he falls asleep.... I think it stunned her... but the fact is he has done this more times than I can remember~ She said I would be in the room with him as he went to sleep... so all the other questions were routine... YES.. if anyone is wondering he was a FULL-TERM HEALTHY BABY and other than stage 4 Neuroblastoma times 3 relapses he is pretty normal! Ugh... that question always makes me think did I do something to make this happen? As you can tell I am over this craziness today... 

More to come later-- I have a purple storm trooper soccer game to attend... and then I will do an update on all the bake sales going on this Month.... :) 

In the Air again..

Grier and I will leave on Sunday for a week long trip to Philadelphia.... we got his scan schedule and it all seems too real right now.  Every hospital does things differently so this will be a whole week of changes.... starting with his Bone Marrow tests on Monday morning. They only do 2 sites... and they do it with general anesthesia... TWO HUGE changes for Grier... The docs said he could choose front or back...RIGHT...... I think I will choose... ugh! Tuesday he will have a CT scan and his MIBG injection and on Wednesday he will have his MIBG scan... we will go over results.. and if there are no surprises.. we will sign consents and he will get the first dose of the "millennium" trial-- we will be able to go home on Friday evening.  We are going to try to stay at the Ronald McDonald House but we will not know until Sunday after 10a if they have a room for us... They said they help find a hotel if not... the only issue is that it is graduation season and there are lots of schools in the city... might make it a little tricky.  We have a request in for corporate angels... and I can only wait so much longer... gambling with airline flights is not my strength. I wish they would just let me hold some seats for a few days... :)

Next week is NOT ideal in our life schedule... but NB has not waited for "ideal" in the last four years so I am hoping the absence during EOG ( END OF GRADE TESTING) week will not make a huge difference.  Honestly my two older kids should be used to this crazy life and it might not make one difference... possibly even make them do better. I will miss some  things I had on my calendar too... but again nothing new~ it will all be worth it if this drug works.

As I stare at my suitcase I have not unpacked and the toiletry bag that I live out of, I remember I have not updated about our trip to CHOP last week. It was a really quick trip but loaded with lots of information, so much so my head is still spinning. Jeff's dad drove us to Greensboro late Tuesday afternoon .. Our corporate Angel Flight was not until 6:35. We landed in Philly later than expected.. But we had a nice easy flight. A "red" cab drove us to our hotel ... Grier thinks the cab was red because the Phillies are red! We checked in the hotel and walked out to go find some dinner and explore the neighborhood. We ended up eating outside at The White Dog cafe.. It was recommended to us by several people so we decided to give it a try. Grier's first observation of Philly was that it was so quiet.. He said, Where is everyone?" After dinner we walked back through the university of Penn and settled down for the night. Wednesday was busy.. And we woke up to rain which was going to make our planned walk a little tricky... We ended up having breakfast at the hotel... I didn't see they had room service do we went to the area where they had continental style... I don't think it phased him... He did have a flat screen :) Our Appt. was not until 12:15.. So we packed up and decided to leave our bags at the front desk so we did not have to take them to the hospital with us. The funnies comment from Grier was ..mom, are you going to leave the beds like this? He is so used to me CLEANING and BOXING up sheets .... And I said, YES with a smile on my face -we walked around university city area and saw the first Ronald McDonald House ever built and more of the Univ. Of Penn... We stopped for lunch at a cheese steak place called Abner's.. Grier had his first and I think I need to get them to make it with cheese wiz next time.
The day went fast.. And before we knew it we needed go pull out the map and walk towards CHOP.
My first impression is that it is ginormous! We had to do all. The insurance stuff and fill out many forms... And then we waited... We first met someone that did Grier's blood pressure, height and weight. Then we went back to thewaiting area. The next person was from the NB team.. She was a fellow and wanted to go over his 4 year history.. After a little more waiting we finally met Dr. Mosse. She was very attentive and gave her ideas for Grier in regards to what she thinks we should do. We actually found out we had more choices than just MIBG therapy. CHOP has 2 trials that Grier should qualify for. He will need to repeat scans again at CHOP because we were just at the 15 day mark from the scans we did in NYC in April.
We should find out this week when those have been scheduled so we can get started on the Aurora A Kinase Inhibitor phase 2 study. The purpose of this drug that is given by mouth for 5 days is to stop tumor growth. We don't know if it will work on Grier but we are going for it.  It does not come without side effects... his blood counts will be effected and he will probably need platelets - there is a list of other possible scary side effects as well... I think we will start with this.. as the doctors have said.. he has had a lot of chemo.. and it will stop working or cause more damage than good. I think this is a good time to try other things.. and we always have the "wicked chemo" to use but for now it will be on the shelf!  After we found out the options we had we ran out of the hospital and caught a cab... Stop quickly at the hotel for our suitcase and headed to the airport. We just made our flight home... Security line was crazy... And we ran all the way to the gate.. Even slipping in vomit right before boarding. Very gross!!!
We landed in Charlotte around 7:30. Got everyone ready for the next day and then continued with our busy week...


This weekend was one to remember. There were 2 bake sales going on... One was organized my neighbor, Melissa and Grier's preschool teachers he had at First Pres. They had an awesome sale and have raised over $2700 for pediatric cancer research...this will be matched by the Glad Co.-- a huge thank you to all that helped and gave up their Saturday to hang out and work the bake sale table. After I left that bake sale, I went to the Strawberry
Festival in Fort Mill to check out the second bake sale that was in the 2nd day..Kerri, Austen, Tracy, and the rest of their crew did an awesome job for over 15 hours.. They were very successful to and their total is over $4,000- before the match from Glad.


A huge thanks goes to the organizers and everyone that baked and attended the bake sales...you all are good cookies in my eyes.


more to come later as I find out the details...
AVC

Philly ~here we come!

I wish I had the time to actually write a post when I am thinking about what I want to say... every time I sit down to write something meaningful it always seems to turn out like an itinerary of an upcoming hospital trip.  I told Grier a few days ago that we were going to Philadelphia.  He asks if we were going back to NYC when he overheard me on the phone making reservations so it was perfect timing.  At first, he asked WHY are we not just going to NYC... and I said we are just going to see what another doctor has to say to us.  He was standing beside me at the time and I was on the Sheraton Website... the hospital suggested that hotel because it is close to CHOP and they have a CHOP rate!  He saw the pictures and said, oh OK... are we staying there? I said, Yes... and he said, "Do they have room service?" Another, Yes .. and he said, Is that a flat screen TV on the wall?  OK.. at this point I am thinking how dysfunctional are we???? He said.. Well, when are we leaving? Then he ran out and began to tell everyone he was going to Philadelphia.

We leave for Philly today... we lucked out and got a flight through corporate angels to Philly... but we have drive to Greensboro to leave.  It seemed worth it at the time...  we have never done this before.  We are going to stay at the University City Sheraton in Philadelphia for one night.... and yes, I will get the little man some room service for breakfast! We have an appointment tomorrow around noon... and then will fly home and be back in Charlotte by 7- Grier is excited... I feel like I did when we left for NYC for the first time in Oct. 2007~not even sure how to describe the feeling.... but I get waves of nauseousness just thinking about the trip!  Jeff is going with us... that was another funny conversation... We told Grier that Jeff was going and he hesitated and said, "Why is mom not going?" I told him I was going to and he then was excited...

School is going well for Grier-- He is happy to be back with his friends and teachers... very happy! I wish we could just keep this normal going until the end of school.  He had one day last week that he was very upset about going and we found out that he was nervous about practicing for "lock downs" & fire drills.... I knew he was very edgy at the hospital the last time we stayed because they had fire drills all day long... with the help of his wonderful teachers... he is feeling better and not so uneasy about the unknown drills they practice!  We have been very lucky with teachers... I could not have asked for any better teachers for Grier... and the bonus is that we still keep in touch with them.  I told someone the other day that I have sent him to school right after bone marrows... after a huge surgery last year and after rounds and rounds of chemo... I don't have to do that... I could keep him home... we actually have a good time together... but I trusted his teachers so much and knew he was in the best hands while he was at school I felt good about letting him go and being normal.

May is finally here... there are going to be bake sales galore around the country... in honor of Liam's 7th birthday... I am so thankful to all friends and Grier's WDS teachers for putting on bake sales this month..I am going to post about all of the upcoming bake sales in our area... but I wanted to say THANKS to those that are already working on them....

Someone sent me that cancer poem about what cancer can not do.... and I have to say... not sure I believe it.... I have read it and can tell you that cancer does do all those things to you... When I was  in NYC last time waiting for the talk with the doctor I was sitting beside another mom and her child and what appeared to be her very good friend.  It reminded me of my visits with my friend, Anne....  The friend was trying so hard to keep this mom's mind off of scans.... and all the what-if's.. They actually met with the doctor right before we went in.... and I passed them as it was our turn in room 6-- I did not know them but I could tell that they did not get good news.... I had been thinking about them a lot... and I saw a picture of a little boy on facebook and recognized him.... well, it was the little boy in the waiting room.  After reading his blog, I knew it was them... I knew the news was just not good... but horrific... ugh.. makes me so angry... and then laster this week another brave family lost their 21 year old to NB... Nick had an attitude that was very usual for the teenage group... he wanted to get on with life... do his treatments... and continue to live... He died of complications from treatment.  I am just saying all this because cancer is different when you are dealing with a child....

I guess I need to go pack for this short trip.... I am cautiously HOPEFUL that we will find a treatment that works and gives us more normal -- not too much to ask...  but nothing new that every parent I know in this club wishes for too!