Tuesday, March 23, 2010
Friday, March 19, 2010
:)
The last few weeks have been great for Grier.... he has enjoyed every single second of being 5 1/2 --- school, playing with friends, singing songs, playing outside, shopping for T-ball equipment, --you name it he has done it with a smile of his face--
There is not much medical news to update you on--- YEAH!!! He has just started round 4 of Accutane and so far so good--- he is super about taking the pills and letting me put all kinds of lotion on him--- 2 more rounds to go -- Next week he will have to get his port flushed ( not his favorite thing to do but we will go after school so it does not rock his morning!)--- You have to do that once a month if you do not use it-- and believe it or not it has been almost a month since it was accessed for the HAMA test.
Spring Break is fast approaching at our house and everyone is very excited to go somewhere together--- well.... almost together.. Jeff is going to have to stay and work. I am sure our week in Florida will fly by and before we know it Grier and I will be on a plane headed to NYC for a week of 3F8-- We are lucky to have some help/company that week--- Anne is going to meet us in NYC on Sunday--- Jeff will be home with Hayes and Grace helping them get back into the routine of school and sports after a brief vacation-- One thing I have learned from being at home for almost a month is that Grace likes to have one of us here at home if we are in NYC-- so.... that looks like the plan from now on--I am going to have to get back to going to NYC solo with Grier--- either that or get a job with insurance so Jeff and I can switch off- She did say she would like to come but I am not sure that is the best idea-- there are MANY hours spent in the hospital..... and I know she does not realize actually how boring that will be -- besides the fact that she would not want to watch Grier have 3F8 nor would I let her watch so she would be by herself in the playroom-
Life has been pretty good while we have been home.... but I have read enough caringbridge pages to know we are lucky right now--- I guess that is why I tend to "live for today" and not do too much planning.... I can not believe that we are almost on our 3 year anniversary---- THREE YEARS of living in the UNKNOWN--- WOW--- I know so many things now that I wish I knew 3 years ago---- and some that I wish I never knew--- more on that later........
There is not much medical news to update you on--- YEAH!!! He has just started round 4 of Accutane and so far so good--- he is super about taking the pills and letting me put all kinds of lotion on him--- 2 more rounds to go -- Next week he will have to get his port flushed ( not his favorite thing to do but we will go after school so it does not rock his morning!)--- You have to do that once a month if you do not use it-- and believe it or not it has been almost a month since it was accessed for the HAMA test.
Spring Break is fast approaching at our house and everyone is very excited to go somewhere together--- well.... almost together.. Jeff is going to have to stay and work. I am sure our week in Florida will fly by and before we know it Grier and I will be on a plane headed to NYC for a week of 3F8-- We are lucky to have some help/company that week--- Anne is going to meet us in NYC on Sunday--- Jeff will be home with Hayes and Grace helping them get back into the routine of school and sports after a brief vacation-- One thing I have learned from being at home for almost a month is that Grace likes to have one of us here at home if we are in NYC-- so.... that looks like the plan from now on--I am going to have to get back to going to NYC solo with Grier--- either that or get a job with insurance so Jeff and I can switch off- She did say she would like to come but I am not sure that is the best idea-- there are MANY hours spent in the hospital..... and I know she does not realize actually how boring that will be -- besides the fact that she would not want to watch Grier have 3F8 nor would I let her watch so she would be by herself in the playroom-
Life has been pretty good while we have been home.... but I have read enough caringbridge pages to know we are lucky right now--- I guess that is why I tend to "live for today" and not do too much planning.... I can not believe that we are almost on our 3 year anniversary---- THREE YEARS of living in the UNKNOWN--- WOW--- I know so many things now that I wish I knew 3 years ago---- and some that I wish I never knew--- more on that later........
Friday, March 5, 2010
Internal clocks--
I can not believe that we are not traveling this Sunday..... we have been on the go every three weeks for almost 6 months now--- sometimes with trips happening more often. I looked at all our receipts since November and was surprised how many trips we have taken from Charlotte to LaGuardia--
Grier started asking when our next trip to New York will be a few weeks ago--- I think his internal clock was telling him it was almost time to go again.... either that or it was the reminder of the suitcases in my bedroom :) I told him we were home for awhile.. but he keeps asking. Last Thursday we went to the clinic to get his blood drawn for the HAMA test.... and he started asking again... he knows the routine now that he is older... he even started to ask if he had to start taking "those" shots again this week--- Luckily I could say NO-- not yet. We did find out that Grier is HAMA negative-- meaning he will receive another week of 3F8 in NYC the week of April 12th-- I know it will all work out but April will be one of those crazy months--- We will leave for NYC on April 11th aka Jeff's 40th birthday --- after returning from Spring Break in Daytona--
Everything else is going OK--- I feel like I am keeping a reward chart for everything--- But that is fine--- Grier loves a good "prize"--- He loves going to school and talking about his teachers and friends--- even had a "real" playdate and said it was awesome---He also has days that are tough too-- just hates transition and things out of routine---I am reliving some of my early years with Hayes and preschool--- reminding Grier that I will be back~ Derann... I know you are smiling about this!!! Those years of practice are paying off now---
I have been very busy with my list--- I can not believe how much has gotten checked off--- Grier is all registered for Kindergarten next year.... that was probably my most difficult task this week-- Other than realizing preschool is over for our house.... the question "Is he going to be okay" caught me off guard--- because the answer is not YES or NO---- it is "I hope"!
Thanks for checking in--- I am going to include the new commercial that Glad to Give is running about their partnership with Cookies for Kids Cancer--- it is 30 seconds but sure does give me hope and courage to continue this fight as I watch it--- This is a huge deal because GLAD is the first national brand to come out and support pediatric cancer research-- I hope the first of many.....
Glad to Give- CFKC commercial
Grier started asking when our next trip to New York will be a few weeks ago--- I think his internal clock was telling him it was almost time to go again.... either that or it was the reminder of the suitcases in my bedroom :) I told him we were home for awhile.. but he keeps asking. Last Thursday we went to the clinic to get his blood drawn for the HAMA test.... and he started asking again... he knows the routine now that he is older... he even started to ask if he had to start taking "those" shots again this week--- Luckily I could say NO-- not yet. We did find out that Grier is HAMA negative-- meaning he will receive another week of 3F8 in NYC the week of April 12th-- I know it will all work out but April will be one of those crazy months--- We will leave for NYC on April 11th aka Jeff's 40th birthday --- after returning from Spring Break in Daytona--
Everything else is going OK--- I feel like I am keeping a reward chart for everything--- But that is fine--- Grier loves a good "prize"--- He loves going to school and talking about his teachers and friends--- even had a "real" playdate and said it was awesome---He also has days that are tough too-- just hates transition and things out of routine---I am reliving some of my early years with Hayes and preschool--- reminding Grier that I will be back~ Derann... I know you are smiling about this!!! Those years of practice are paying off now---
I have been very busy with my list--- I can not believe how much has gotten checked off--- Grier is all registered for Kindergarten next year.... that was probably my most difficult task this week-- Other than realizing preschool is over for our house.... the question "Is he going to be okay" caught me off guard--- because the answer is not YES or NO---- it is "I hope"!
Thanks for checking in--- I am going to include the new commercial that Glad to Give is running about their partnership with Cookies for Kids Cancer--- it is 30 seconds but sure does give me hope and courage to continue this fight as I watch it--- This is a huge deal because GLAD is the first national brand to come out and support pediatric cancer research-- I hope the first of many.....
Glad to Give- CFKC commercial
GO STEEL FAB!
Go Grier Go Magnets are Here!
Before 3F8
After 3F8
30 minutes later
Free Money for Go Grier Go!.. just by shopping online!!
Grier leaving NY-pres and going back to MSKCC
www.cornellpediatrics.org-- Great hospital!
Grier going for a ride in the ambulance across the street
just transporting-- not an emergency!
Grier patiently waiting surgery to remove tumor
Monday 10/29/07
Go Grier Go Picnic in the Park
Thanks to everyone that helped!!!
On the way to NYC!
Grier at the "new" clinic at CMC
Playing with the doctors and nurses 10/19/07
Some of our team at the Hopebuilders 5k
HOPE IS GOOD!!
Supersib- GRACE
SuperSib-- HAYES
Grier and his Wonder Pets fly boat cake!
I am 3!
Grier & Grace at Covenant
Grier & Pat
Go Grier Go!
Jack and Charlie wearing Go Grier Go T's
