I've had alot of anxiety for the past week about, well not so much about today but about tomorrow. Tomorrow marks the start of our very first radiation appointment. I don't know what to expect or if he will even get radiation or not, it could just be our big sit down "lets discuss" appointment to make sure everything is in place. Heck, i could be stressing over nothing at this point.... i sure hope so.... but then if we don't do radiation I'll just be pushing my stress back to another day. Best just to start it so we can be done with it, don't you think? And i love the "hey lets sit and talk" appointments... but those really play on my patients... and my patients is wearing thin... i think having to battle cancer 2 times in the past 7 years ...out of those 7 years.. really in "remission" for 3 of those year, anybody patients would be wearing thin.
Holy cow it just dawned on me that we have been battling cancer for longer than not! *sigh* depressing....anyhow....
So when we got up to clinic today Dr Afify brought in a copy of the new "road map" for Tucker. Its a outline of the next 104 weeks. Yep... 104 weeks, seems like alot. I think the last week puts us in January 31st of 2013! I can't decide if i like the "big picture" scope of things... or the month by month run down. I think the bottom line is keep an eye on your goal.... our goal is to get to January 31 2013. I think we should throw a HUGE PARTY on that date. Everybody mark your calendars... January 31 of 2013, party at our house..
Oh jeez... I'm digressing again (seriously, are you surprised? LOL).... SO the road map.... 104 weeks.. yep that's where I left off... well as she showed this to me it was full of just big scribbles all over this page outlining my child's life... I'm like... HEY HEY HEY, what's with the scribbles? Did you possibly let a child use this paper as a doodle pad? (no, I didn't really say that...) But I did really say- Um... yes... so... should i be concerned over all this stuff that's written on here and then crossed off or drawn threw? It looks like you scribbled through some pretty big words here that look mighty important (isn't the longer the "word" the more important the meaning? LOL ).... Dr Afify just said--- Well, we had to make little "adjustments" on Tucker's road map.
Sooooooooooooooooooooo.... you use scribbles to make these adjustments? Have you heard of Whiteout? (no I didn't really say that either... LOL keep in mind that my ramblings here tend to be 80% of what I was thinking at the time and 20% of what was actually said- but you get my feelings and the meaning).
The GREAT NEWS.... the BEST PART of today.... Do you all remember me telling you in my earlier posts about the "PEG LEG SHOTS" chemo? Its the 2 huge enormous shots that go right into both of Tucker's thighs at the same time, with this LONG needle, its like the NUCLEAR BOMB OF SHOTS... and its not a quick shot? they have to jam in both needles... push it in, pull back some blood... push in more meds.. pull back blood....ect.Its a very long painful shot that he has already had multiple times (took it like a champ!!)...
Well he is due to have alot of the "PEG" chemo... I mean ALOT of that... but new studies have shown that that specific chemo has the same affects given in an IV vs giving in a shot! SO GUESS WHAT??? He gets the PEG LEG SHOTS meds in his IV!!!!!! Tucker did a happy/victory dance... I breathed a huge sigh of relief... I mean, those shots... were HORRRRRRRRRRRIBLE... so having this change sure changed Tucker's tune up here today. He is SO much more relaxed. We just had those shots about 2months ago, and that memory is still fresh in Tuckers mind. This change is awesome.
But back to the other scribbles on Tuckers outline... of course the steroids were crossed out- that is just a "hit" to his treatments that we will just move forward without, and the rest of the scribbles... I can't even tell you. Its still just confusing to me. Its all about different meds at different dates at different times.Hey as long as we don't have to have the PEG SHOT again, I really don't care. The trade off (no I'm not complaining) from doing the PEG shots in the IV vs the actual shot is- the shot, for as painful and as crappy as they sounded.... seriously took about 20 seconds to give him (yes those 20 seconds felt like 5 minutes), and the IV PEG will take 2 hours... *ugh* 2 HOURS to infuse. But when we are already up here, whats an extra 2 hours? Nothing really.
So today's appointment is extra long, Tucker needed a blood transfusion in order to get ready for radiation this week. His red cell counts has to be above 30 to get radiation and on Friday he was at 25, so we are getting 2 bags of blood. Each bag takes about 1 &1/2 hr to infuse... so that's 3 hours and THEN we will get IV chemo that will take 2 hours.... yes its a long long long day up here, but we are not admitted and that's aways a plus, and we are not getting the nuclear bomb of shots.. so in general we are happy. Tucker always feels like a million bucks after getting some new fresh blood running through his veins.
People, please remember to donate blood anywhere you can... you never know, your blood could be helping out a kid like Tucker.
Tucker got a surprise visitor today, Roxane Shipman, Tuckers 4th grade teacher (and the worlds BEST teacher ever!) came up today to talk to Dr. Paul (the child psychologist... see earlier post) about the test results from all his brain test Paul put him through she also got to met Dr. Afify. I feel completely confident that Roxanne will have Tucker's school all ready for him to start 5th grade (oh my baby is getting old) come August. One of the best decisions I ever made with Tucker was putting him in charter school at Quest Academy.
So I'm just sitting up here counting down the time- probably 3 more hours to go- until we can go home & then tomorrow we will drive back up here to start our radiation life.
Wish us luck, all 3 of us will be at Tucker's appointment tomorrow. Justin (the worlds most awesome dad) is just as anxious for radiation to start as I am and I'm so grateful that I have him there to lean on and have him to help out with.
Thank you Justin for all you do for us.
I love you.
Love to all
Justin, Amber & Tucker
tucker getting a blood transfusion & a volunteer came to do something with tucker that mom can't do.... play the Xbox :)
Tucker & Roxane- she came to visit today and got to visit with Dr. Paul and meet Dr. Afify. It was a great day!
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