It's HAMA time!

Today is the day I dread.... not because we have to go to the clinic but because reality sets in and I have to take Grier to get his port accessed and have a vial of blood sent to NYC to see if he is eligible for another round of 3F8.  We did the clinic visit early this morning before school.  It went OK.... it is not fun when I have to tell Grier that I need to put numbing cream on his "button"-- he immediately goes into panic mode! We got to the clinic and I realized I forgot our "3F8 box" ( a little white box with instructions and the tube for the blood all labeled.... oops!!) So~ we drove back home and then back to the clinic :) It just gave the numbing cream more time to work :)  He did OK with the port access ( lots of screaming but no tears while he is prepped) I would be the same I am SURE!--- I had a few questions about accutane... those side effects drive me crazy!!! I thought his skin was looking great.... and as soon as we walked in Dr. M saw him in the waiting room and said... oh I can see he is taking accutane!!! I said really???? I thought he looked good and he grinned and said his lips gave him away---- I can't wait until this Sunday-- Grier needs a break from medicine!

We will hear about HAMA by Wednesday.  It really does not matter this time in regards to traveling to NYC--- we are going no matter what on Super Bowl Sunday.  Grier will have scans that week so I bought the tickets yesterday--- I wish I would have gotten them earlier.... I was waiting to see what Jeff could do with work so I waited to buy the tickets.  I had no idea that the weekend we are coming home is a holiday weekend-- uggh......... We are going to have to get off the "holiday" schedule--We have been on it a lot lately--  Most flights home were sold out and VERY expensive.... oh well... I do not have a choice so the tickets are done ~ Jeff, Grier, and I leave Sunday the 7th-- We will return on the 13th--- not as early as I wanted but I can always hope that corporate angels will fly from NYC- CLT again.... it sure did help ~

Grier has been doing great.... he takes his huge horse pills and all his other medicines without a problem. He likes going to TK and loves telling us about his day.  He wants to "learn" how to read so Maggie got him some tools to help with that-- This will be the first time all year he has gone to school two weeks in a row--- and we are not even leaving yet--- He has next week too!!!  My two weeks at home have been crazy.... last week was a blur.. very busy trying to catch up where I left off-- and this week a little of the same... I still have lots to do on my list... I had to take Hayes to the doctor after I took Grier today-- Grier kept asking me why I could not just take Hayes to "his" doctor-- I tried to explain to him they are different doctors-- !  We also had to take Tucker, our Golden to the Vet yesterday because he has another UTI ( and yes, I did have to get another urine collection from our dog--- if you are on Facebook you know I am getting good at that!) -- I think tonight after dinner I will just line everyone up and pass out their meds!!!! Grace and Jeff are the only ones that do not need to line up!! Doesn't our house sound fun!!

I will update before we leave--- I am hoping to hear that he is HAMA negative so we can continue on this study. I am also hoping to hear the phrase "clean scans" so we can continue on this path that we are on.  We have never had scans and 3F8 in the same week so it will be very busy--- we are also going to try to do the MIBG scan without anesthesia for the first time--- ( I do have anesthesia scheduled as back-up)-- but I am hoping it goes well and he is OK with staying still for an hour while the scanner scans his whole body.  I am sure he can do it...  I am just not sure I can NOT look at the screen while I am in the room with him---

ok that is it for now-- Grier is back from getting his cleats for T-ball--- He is VERY excited..... Now we just need it to warm up so baseball season can start!!

We are home.... we landed in Charlotte around noon on Saturday and have been very busy ever since!
Our week in New York was uneventful and very familiar.  All 5 days, Grier experienced lots of pain with hives and a high heart rate ( 180's-190's) during the actual infusion of the antibody.  And all 5 days he slept most of the day after we returned back to the Ronald McDonald house-- He also had headaches after treatment.... they were really bad and we ended up sitting in a dark room while he slept.  Each night he would perk up a little by 8:30 or 9 and want something to eat, so of us would venture out to First Ave. and pick up his requests!!  He would go back to sleep late each night and wake up each morning ready for his shot and then we would head to the hospital--- I can not believe this was the 7th week of this type of treatment... 3rd after relapse..... I am not getting any better watching it and listen to others go through it but I have learned that a "good" day of 3F8 is one without crash carts and a team of doctors in your room-- so even though I think our experience is really bad I know we have had a good week of 3F8! Uggh---

Grier started accutane again on monday and he will take it twice a day for the next 14 days.... I have a new emollient, Theraplex that will hopefully keep his skin from breaking down too much during the next 14 days. I am also hoping we do not experience the nose bleeds and headaches.... hmm... am I asking too much?? We will return to NYC on Feb. 7th ( yes, Super Bowl Sunday-- I had a been there done that feeling when I found that out... we were in NY when the Giants won ~) I guess if we will be in NYC for the Super Bowl it would be great for the Jets to win--- :) It will be a week of 3F8 if he is HAMA negative AND a week of scans.... I am trying not to let scanxiety come too soon--- I said TRYING..... I can not believe it is already scan time again.

Grier is at school this week--- I am hoping the next couple of weeks allow him to get in a routine... he has had a lot of "first" days this year!  We also need a new routine at home... living in one room all together for over a month has not been great on the old bedtime routine we had and just "independence" in general--- He has developed new fears and does not like to go anywhere by himself--- even BED!!!

That is it for now--- Sorry for the delay in updates... There is a new password system at the Ronald-- takes awhile to get a password to use the wi-fi--- after I got the password the wi-fi was spotty at best so it was a frustrating week on the computer.

Thanks to all that helped out last week while I was in NYC with Grier and my mom.... dinners, rides, etc.

A HUGE DONATION!

I have updated a few times since the amazing Cookies for Kids Cancer Bake Sale that was held at Blackhawk Hardware and Reid's .  I have not talked about the event purposely because it seems everytime I sit down to update I am rushed.... I really wanted to tell you all about the day and all that happened--- I also wanted to tell you how much money we raised for pediatric cancer research... So, here it goes... I just hope no one calls "MOM"  for a few minutes! 


Most of you know that we did our first Cookies for Kids Cancer bake sale in 2008-- It was Gretchen's birthday wish to have 50 bake sales--- so I said yes.... and actually talked my college roommate into doing one in Morehead City, NC.  We did our sale over a two day weekend in our front yard... it was Festival in the Park weekend and we had tons of foot traffic :)--- Kristie's church in Morehead City did theirs during youth Sunday and it was a youth mission project.  Both were very successful and involved a lot of people... we had a great time and knew that we wanted to do it again.  
I again made a promise that we would have another bake sale but I had no idea what August 2009 had waiting for us..... Most of you know by now I am a day by day planner... I don't like to make long range plans so I was waiting until we finished our quarterly scans in NYC to set the date for the next bake sale.  When we found out about the possible relapse I went back into a fight mode and was very busy scheduling tests and procedures so we could find out if Grier had relapsed.  By the end of August, we found out that Grier had relapsed and the crazy life that we led in 2007 was again our normal-- The bake sale was still on my mind but I had no idea how it was going to get done.  I had only slept in our house a couple of nights a week and Grier and I were always at CMC for something and we knew we would be in NYC for awhile for surgery... we also had a team for the CureSearch walk to organize so our plate was more than full---- I don't even remember most of the conversation with Lesa but I know that her offer to help with a bake sale transpired into my dream bake sale.  I do remember very early in the planning stages,  Lesa emailed me to tell me her daughter, MacLean works at Polka Dot Bake Shop and they had offered to donate 500 cupcakes to the bake sale and from that email I knew this was going to be a great bake sale--- really I had no idea Lesa, Patty and Mary could dream bigger than me!!!
Lots and lots of planning took place in three short weeks.... Grier and I were in NYC for treatments and I would get some updates... I loved to hear about the planning--- it was exciting to hear about so many people coming together for pediatric cancer awareness and research.  Bakeries from all over Charlotte wanted to donate baked goods for this bake sale-- Lesa even said that she had bakeries calling her to ask if they could participate.  We also had the "homemade" goods made in the homes of friends--- I love to hear about the awesome toffee that people bought-- because I am quick to chime in--- "That is my neighbor, Melissa who made that..." I also heard a story about someone being a nice neighbor and helping an older couple clean their yard-- and in return they made tons of cookies for the bake sale. I had the best time sitting with Lesa and Leah on Christmas Eve at Dilworth Coffee  listening to bake sale stories.... it was a wonderful "gift" for me.  I think the most touching story was about the man who lived in the Men's Shelter near Reid's.  He was one of the first "customers" and donated a couple of dollars... I know the bake sale volunteers were trying to give his money back but he insisted....he wanted to donate to pediatric cancer research so they packed him a huge bag of goodies and off he went--- amazing huh? There are so many stories like the ones I just shared.   I wish I had a book of all of them... there are so many "good cookies" in Charlotte!
The raffle was also a big hit --- I was again overwhemled with the amount of donated items from businesses and people all over Charlotte.  I was lucky enough to help draw the names-- it was great... I loved pulling out a name and saying.. I know them!! If I did not know them I do now since we called and met them at Dilworth Coffee so they could pick up their prize.  I am glad I was able to do that since I was not able to be at the "bake sale" in person.
I have thought about how I could THANK all that helped on that rainy and cold Sunday--- and I have no idea--- I like to say that this blog is a THANK YOU because I could never handwrite notes to everyone that has been on our Grier Team--- but the bake sale organizers, volunteers, bakers, drivers, participants need a special THANK YOU because that Sunday (and the 3 weeks of hard work) before the day gave me and lots of cancer parents HOPE--- Money that is raised for research will provide better treatments than the ones that are currently 20 years old (chemo).  Money will also pay for clinical trials that are underfunded because pediatric cancer is still considered rare.  100% of this donation went to pediatric cancer research --this is really important to me since a lot of organizations use children's photos but give less than 3% to pediatric cancer (ie. American Cancer Society).  
Grier's relapse certainly rocked our world... but I have HOPE that new trials will open up so we can keep him as healthy as he is right now--- and prevent any other relapse.  The Charlotte, NC Cookies for Kids Cancer Bake sale raised almost $14,000 (Glad to Give matched November and December bake sales)and raised more than the San Francisco and NYC bake sales. I hope everyone just said "WOW"-- Charlotte is full of "good cookies"
I guess I was totally kidding myself to think I could write a "well-thought out" blog without being interrupted.... :) I hope you could get a little bit of a picture of the energy and time that went into the planning of the bake sale on steroids!!! I also hope you know how much our family thanks you for being a good cookie.  I hope that you want to come out and support this event next year and many years after.  And THANK YOU to the EVERYONE that helped in someway...see you next year.. at the 3rd Annual Cookies for Kids Cancer Bake Sale~ If you have pictures from the bake sale I would love to see them... please email me~

What day is it??

For over two weeks I have been trying to get back into the swing of things at home--- Christmas and New Years added lots of extra "fun" here---- We had a really nice time with family and friends.... and the break from school was nice....

Grier did great at both of his appointments in Charlotte--- We just finished the 14 days of accutane and I was a little nervous at first.... he had a really bad headache and threw up so I made the phone call to both doctors to see what they thought.... we kept a close watch on him and made sure he he was eating and drinking enough when he took the pills... He did not seem to have another bad headache after the first day. He did get a really bad nosebleed on Christmas Eve-- took awhile to stop but has not had one since- both are common side effects of accutane~

I did gamble a bit... I went ahead and bought our plane tickets for NYC a week ago even though I did not know if he was HAMA negative or not---If his test came back positive we would not have gone on Sunday but I am happy to say he is HAMA negative so we are leaving for NYC on Sunday... well, let me rephrase that.... HAPPY is not the best word !!! We are leaving for NYC and will continue on the treatment plan that we had planned on--- :)

It is the 3F8 antibody treatment and it will last Monday- Friday. I have to start giving him shots tomorrow as well as another medication to prepare him for Monday.

Grier went back to TK today -- he seemed to have a great time... the funny thing was that he said that he missed school yesterday... I honestly thought they had a teacher workday so I messed up!!! Oh well..... I am not used to the school routine either :)

That is it for now-- I am sure I will update before we head to the Big Apple for the first time in 2010~