Saturday, January 24, 2009

To G-tube or not to G-tube... we got our answer...

Hi everyone!

I know, our appt was Wednesday and it's Saturday. That's 3 days and I haven't updated. You need to understand something though... Katie's birthday was on Wednesday. She turned 7. She has been talking about turning 7 since the day after she turned 6! On New Year's Day she woke up yelling, 'It's January! Finally! It's my birthday month!' So, while Wed was an important day for Mike, it was an important day for Katie too. And so was Thursday and Friday and today. I swear, there isn't a year that goes by that Katie doesn't have at least 3 birthday cakes and a week long celebration! This kid LOVES her birthday! LOL
So, now that you know why I have been MIA now I will fill you in on what happened on Wed. We saw Dr. L. He is very nice and very informative. I was thrilled when he said that they were ok with me trying to administer the chemo orally for the 2 rounds and then re-visiting the g-tube discussion after the scans come back and show that this Temozolomide (Temodar) is doing what it needs to do. Then he dropped the bomb... we were starting that night. They called in the prescription for the chemo and an hour later we were heading home with a compounded liquid chemo for me to give to Mike. We got it at Cherry's Pharmacy in Manhattan, right up the block from MSKCC. What a great pharmacy, by the way! They are mainly a kids' pharmacy... flavor EVERYTHING, they compound pills into liquid or other forms for the kids that can't take pills, they sell all sorts of kid OTC meds, they have a train on the ceiling and a train table on the floor. And, they are great and the Drs at MSKCC trust them to give me the right chemo... so I guess that means I have to trust them too, right?
Anywho... we got home and I dreaded the chemo time all day. They told me that my best bet is to give it to Mike at night so he can sleep through the worst of the nausea. The catch is, that he has to take it on an empty stomach. For Mike the grazer that was going to be hard b/c you very rarely find him without cheerios or waffles or pretzel sticks in front of him! Not to mention that there went my idea of hiding it in ketchup and eggs, or bribing him with cookies or waffles... I just had to give him the meds. I had to give him Zofran (anti-nausea) and then give him the chemo 1/2 hour after that. The first night went AMAZING! Don't get me wrong, the idea of drawing up chemo to give to my 3 year old son was horrible. My hands were shaking and I just kept telling myself that this one is going to work, this is going to be it. I mean, there was some level of semi-denial about what you were giving him when the nurses were administering it. You could blame them when he was sick, you could say that they were trained and they know what they are doing when they give him this medicine. I worked on Wall Street, I did privacy compliance work and I'm his mom, am I really going to be able to do this? Well, I did it. I wish I could say that I didn't surprise myself, but I did. It's amazing how you really do just do what you have to when you need to.
My mom held him in a cradling position and he took both the Zofran and Temodar like a champ. Don't get me wrong, he cried and he fussed but once I got the syringe in his mouth and squirted the meds in he took them!
Last night, Friday, was night 3 of 5. He has been great taking it all 3 nights. Just 2 more to go! Wish us luck that the next 2 go as well as the first 3!
I am off to Katie's birthday party with her friends for birthday cake and celebration number 3 and then we are heading up to my in-laws for cake and celebration number 4! Chemo will be at my in-laws tonight... I hope we do as well up there as we are doing down here!

Please keep those prayers coming! I hope all is well with all of you and your families!

Love & Hugs,
Chrissie

3 comments:

Lucinda said...

I just wanted to tell you that I love your music playlist. I almost lost it when I heard "You're the Inspiration"...such great songs! :)

Blueangels said...

Because of your blog I went to give blood last week. I work in a hospital and can do walk in givings in the basement. I made an appt. and went down.
They denied me because of Iron. So I have been eating lots of green veggies and vitamins this week and will go for another round Thurs. :)
Everyone asked me, "why are you giving blood today" and I told them, "I am giving because of a little boy named Mike in NYC." :)

dude said...

you rock mommy!