I'm back--

It has been forever since I have taken the time to update this blog.... and for the most part no news has been good news.... I thought about updating on our 3 year anniversary date, the 27th of March.... but did not know what to say that was different than the last two years... it is a day I remember well but there are so many other days that are just as important in this journey.... I also think our relapse date has set a new tone for the original date anniversary.... The last few weeks have been hard in my second world... lots of kids we know have relapsed and are back in the fight... some for the 4th time.... it amazes me that research is not anywhere closer to keeping these kids "clean "after they have spent more years doing  chemo, radiation, sugeries, clinicals trials than they have just being a Kid--- I think I said recently that kids should not have "bucket lists"---

7 weeks flew by at home--- Grier went to schol everyday he could and now says he loves school--- We are very lucky to have wonderful teachers that helped him readjust to a normal routine,,,,  T-ball started a few weeks ago.... I feel like he has waited forever to finally be on a team of his own.... He asked for a pair of "slippery underwear" and Jeff found a tiny pair of sliding shorts with a cup-- He was on cloud nine... He also talked me into an airbrushed batting helmet... He loves it and can not wait to wear his helmet with flames....it is amazing what you can find on the internet.... :)

We spent Spring Break in Daytona Beach and had an amazing, relaxing time -- thanks to Aunt Linda and Uncle Ken for sharing their home with us--- being at the beach was very relaxing and the change of pace plus the extra space to spread out made it the best spring break ever..... We had great company for a few days... my cousin Stephan and Lauren, and the Barnettes... we did not want to come home-- but reality set in on Wednesday when the shots had to start again for Grier 5th cycle of 3F8---

Grier and I were home 12 hours and left on Jeff's 40th--- We flew to NYC early Sunday morning and met Anne in the LaGuardia Airport.... She is with us for the week in NYC to help---- really can not say THANK YOU enough to her... Will, and Zanna and George for rearranging their lives for a week so we have help and company.....

Our RMDH house stay started a bit rocky.... had to change rooms for a variety of reasons... around 10:30 pm and basically went to my worst fear... room 807--- I did agree to it-- so you know the old room was pretty bad... not really going to go into the drama.... but it is OVER and we are in the room the we do the sideways shuffle to get around.... there are not too many people that I could share this room with so I am glad Anne is here.... :)

3F8 has been going well--- I guess... yesterday was a pretty normal Monday.... LONG & PAINFUL  but also fun to catch up with the nurses we have not seen in several weeks--
Today the same but for the first time in 9 cycles we took Grier back to the clinic because I was worried --- He was breathing rapidly and would not take deep breaths... he was made and crying when I asked him if his chest hurt and yelled at me that he did not want to talk about it--- we waited and watched and decided we would walk back to get them to listen to him....  I am glad we did-- he was fine and it was decided he was having pain and trying to too breath deeply because it hurt.... a little dilaudid and he was good to go the rest of tonight....

I hope everyone saw Lesa's letter about the upcoming bake sale--- I wil be there unless our scans are scheduled that week--- working .. baking.... and doing everything I can to help raise $$ and awareness for pediatric cancer.. I hope you all join us -- it will be fun :)

And last but not least Thanks to all those helping this week while we are gone.... meals, rides, encouragement, EVERYTHING-- It makes being seperated easier knowing that everyone is happy and taken care of in Charlotte--

Hopefully a better update later...
Amy