Grier had an MRI last Friday.... he had to miss school because it was at 7:30 in the morning. He was fine with the whole idea... a "picture" is nothing to him. He got a little anxious about the IV they needed to give him so they could inject the dye. I gave him an ativan and he was OK--- almost too OK--- he didn't flinch when she had to look for a vein... said he looked like a Storm Trooper when they put his head in the mask, and just listened to Kids Bop through headphones while the hour long MRI took place. He was very still and only had a little bit of "motion" while he made his eye brows dance to the beat of a Justin Bieber song! So, we had to re-do a 3 minute segment... no big deal... MRI's are so loud... even with earplugs the rhythmic sound is annoying-- I wish I could take a picture of him on the scanner... he really is a good sport-- and it is amazing he stays so still-- he can only see me by looking up at a mirror-- sometimes he gives me a wink while I give him a thumbs up-- he can not hear me and I stand beside him massaging his feet---as you can see we have a good routine down... By the time he got up off the scanner... he was "loopy"-- The rest of the day went downhill... the ativan wore off and he needed to sleep and we experienced the worst tantrum in his whole life....after the tantrum he started throwing up.... and I was a little concerned until I got the call from the clinic that his MRI was totally normal.... He has gotten headaches after an MRI before and they have been so bad that he has gotten sick so that is what seem to happen again... He recovered very quickly and headed to Pizza Peel to enjoy the night with friends...
On Monday, he was suppose to have an echo but that was cancelled so he went to school until 10:45-- and then I took him to the clinic to start the week of chemo. He has completed 3 days of "kindergarten and chemo" this week--- with little side effects... but he is taking a lot of Imodium! He was tired this afternoon and that seems to be the "normal" side effect of this chemo-- by Wednesday he is worn out--- He naps a little and keeps on going.... He is looking forward to his second soccer practice and game this week--
He will have his echo and urine test on Monday the 27th--- and the following Tuesday, Oct. 4th -- Grier and I will head to the big apple... to finish the scans... We will fly home late Thursday. The last time I flew out of LGA I was a mess... just found out he had relapsed --- just flying into LaGuardia brings back all those feelings... That is what scanxiety does to you----- I recently read the perfect description of scanxiety --
Scanxiety": acute mental psychosis characterized by, but not
limited to: irritability, loss of sleep, crying at the drop of a hat,
nausea, vomiting, heart palpitations, hyperventilating,
forgetting to breathe, headaches, loss of ability to be rational
or think clearly, loss of ability to remember why you entered a
room, loss of appetite OR inability to stop eating everything
that isn't nailed down, pacing, incessant hand-wringing,
sweating, staring blankly into space, facial ticks, stepping off a
curb without looking both ways, and nonsensical muttering.
Subjects should be assumed to be armed and dangerous.
Approach with extreme caution, especially if you are a doctor.
Attempts at humor, perkiness or inane platitudes are at your
own risk."
I appreciate all the offers to go to NYC with us... but I am not good company during scan week... just ask Jeff and Anne!!! Hopefully Grier and I will get a corporate angel flight... and we will be so busy at the hospital that the 3 days we are gone will go by very quickly--- Grier did ask me today at the clinic if he could go to New York one time and NOT get a port--- hmm... I asked him what he would do in NYC and he said he would go to a NY Jets game-- I told him I would rather go somewhere else for a vacation.
OK-- Enough about the medical stuff---since the last time I updated we have had 9 more days of fundraising. We have seen some really "good cookies" during the past 22 days!! I can not wait to tally up the total and tell you how much money we have raised for pediatric cancer research! Lesa and I have had fun seeing everyone at each location and more fun battling the banner each morning.... There are so many people that have helped us behind the scenes... and we thank you--- When you see us on the 30th I can promise you-- we will have a smile on our tired faces..... it has been a LONG month but so rewarding-We want more cities to take this idea and run with it--- just imagine if there were "30 days for a cure" all over each September.... that would get the message to people that change is needed when it comes to pediatric cancer funding.
I wish I could write about all the good cookies in the last 22 days.... here is one of the moments of last week.... Victoria was a very good cookie --- watch the video for the whole story! The funniest thing was that I had to fill out a w-9 for the $$ that I donated-- and Grace was a little disappointed when I told her the story as she quickly reminded me that her birthday is in a week--- :)
so... the plan is to finish the week of chemo... get the echo and urine test in Charlotte -- go to school a few days ( actually go the whole day)-- and start the month off meeting with the docs in NYC about the results of the scans... sounds very familiar.... a holding pattern waiting on "something"-- Who knows what the "something" will be--- we will find out soon enough!
1 comment:
Amy, You are such an inspiration! I keep your family in my thoughts and prayers.
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