Monday, October 25, 2010

A long day, but a good one!

We took you last Thursday for the first treatment of the last half of DI. I worried how you'd do with no food in your belly, and a little bit of lingering appetite from the steroids, but you did awesome! You were pretty nervous when you got plugged in, but were ok after that. 

I thought it was going to be a long day...I was right. We left the house at 9am and didn't get home till 4! When we got up to clinic they got us in a room pretty quick because of your RTU appointment. They accessed your port with a needle we brought from home. You like the home health needles better because they lay flat against your skin, and the Primary needles have a clear plastic top that pokes out and bugs you. I thought that since you were going to have to stay plugged in till Sunday you'd do better with the flat one. We met with doc Frasier (hes a research doc, but has to do clinic days too).  He went over all the info about your new drugs and side effects. I hate that part cause it puts a pit in my stomach. I hate not knowing how you'll react. Its anxiety... a lot of anxiety. As we were talking to the doc he said "one more in-office treatment till Maintenance" ....WHAT?! I thought we had 3 more...I thought there was 4 weekly treatments in the last half  of DI? The doc said only 1 more in office, plus the three we give at home! I was so excited!!! I cant believe it!! One more in-office treatment and then 3 weeks off! Your due to start Maintenance on Thanksgiving! (they said they'll probably do it the day before Thanksgiving) I cant believe were nearly there!

So here's what your treatments are like this half. On Thursday you got a back poke, then we had to come back up to the clinic for chemo.  You got fluids through your port first(40 mins) cause the new chemo can be hard on your kidneys... so they want you well hydrated so you can pee out the chemo quickly and it doesnt sit in your kidneys. Then it was the Cytoxan (30mins), then anzemet (anti-nausea 5 mins), then Ara-C (3 min). You also got a prescription for 6TG that you have to start taking orally at night.

This was your first visit without hair. I tried to get you to wear a headband...I don't know why. I just want you to. You wore it till we got to the hospital then took it off and left it in the car. On our way downstairs from the clinic to the RTU 2 people comment on how cute our "little boy" was. I was totally bugged. I don't know, maybe it was protective mother instinct, but how could anyone think my cute baby girl was a boy!? To be fair you had just a HopeKids t-shirt on with a long sleeved white shirt under and jeans, kinda boyish I guess...but your shoes were bright pink and sparkly! How many boys wear bright pink and sparkly light up shoes? I really don't know why it bugs me so much..but it does.

I have to admit that I have a hard time when you go with me in public. I love that you can go places with me...Ive missed my little friend at the store and running errands. But I hate all the staring eyes, and pitiful looks! I wanna tell people "Shes fine, shes a normal kid just like yours...quit staring at my beautiful brave little girl!" I know how it is though...I would've looked twice too. Its hard to see a bald kid and not wonder what they have and how they are doing.  Its hard to see a sick kid, but its harder on the other side....with people looking and wondering.  I just don't want YOU to feel different. I want people to notice you for your cuteness again, not for your sickness. Oh well I guess. No use stressing about something I cant control...this too shall pass....eventually.

After we got home from clinic on Thursday you pretty much laid around all day.  You seemed totally wiped out. You slept really good Thursday night and even slept till 10am the next morning! That was definitely a first for sure!!  You laid around again Friday morning, but by the afternoon you were out playing again.  You were even mad when I had to call you home to get chemo!
Still asleep at 10am! Even I cant sleep that late!

Chemo at home is a strange experience.  I cant believe I have chemo in my fridge! Its such and indescribable experience to give you baby chemo your self.  Its not right. I don't like it, but its WAY better than trudging down to clinic 4 days in a row. I was mostly worried about de-accessing you. You hate getting the sticker removed and you have a hard time sitting still. It was daddy's turn to stay home from church with you and so he was the one who got the task.  He gave you your chemo, then de-accessed you without a hitch! He said you were nervous but you did really well.  I think the wrapped present was a good motivation to hold still. We wrapped a floor size Toy Story coloring book and some markers up as a prize for being good while getting un-plugged.  Whatever, you earned it!
Dad is holding your shirt up. You kept trying to pull it down
cause  you can feel the cold medicine under your skin!

You have done pretty well with being accessed.  You hate it though.  It took the first few days to get used to, but then you realized you could still do all that you wanted to while your plugged in. Hopefully next week you wont have the learning curve again.

 As far as side effects though, you are amazing.  Its like nothing to you.  Your not sick or anything!  Daddy says maybe after next week you will, once you have more in your system, but I don't know.  I hope not. Your such a beautiful brave little girl!  A fellow cancer mom posted a neat song/video on her blog that I think sums you up...and had me in tears!

1 comment:

  1. I am so happy we saw you guys at clinic that day! I have LOVED reading your blog (I have been on here for an hour) You guys are doing such an amazing job dealing with all of this, it is an inspiration to all of us following in your footsteps :) I am so not looking forward to doing chemo at home. It just doesn't seem right, but Im glad to have you other mom's doing the same thing. I hope this weekend is a good one for you all! Happy Halloween!!!