Thursday, September 16, 2010

First day of Delayed Intensification

The sunrise from our back deck.
What a really long day, but thats just how it goes sometimes.  I was up at 5:30am (it was a beautiful morning) to start getting everything ready so we could leave the house by 7am! I waited until 6:45 to get you out of bed because you couldnt eat breakfast before we left. I thought the less time you spend at home the easier it'd be. Last night you picked out your "One Tough Chick" shirt (with your matching pin), some shorts, and your Twinkle Toes. You were feeling like hot stuff I think....for a minute.  I could tell you were getting nervous about todays treatment because you werent your usual talkative self.  You hid behind my legs, and wouldnt talk to the nurses. Usually your a lot more engaging and even a bit of a show off.  The closer we got the more emotional you got. It wasnt horrible, but just enough to let me know you were nervous.


One Tough Chick shirt. (why cant i rotate these?)
We got there just after 8am, checked in early for the RTU, and then headed up to the clinic.  You were riding on daddys shoulders and didnt wanna get off even for the elevator! We got to clinic and we were one of the first patients to arrive so you and I set up the chairs in the waiting area and started to read some books.  It always mellows you out  to read a few books. They have a hat rack in the waiting area where you can pick a hat to take home.  You've never seen any you really liked until today. It looked like someone had brought in a bunch for donation just recently because there was a big bag full of them. I think someones grandma knitted them because they smelled like my Great Grandma Greens house. I love that smell.
You trying on a mask in the "monster faces" book.
Soon you got your vitals taken and we were back in our room waiting for you to get plugged in.  We talked to a bunch of doctors about all the chemos and the side effects, and what to expect over the next 8 weeks.  He said your counts will probably get to zero within the next few weeks, and that your hair will most likely fall out sometime during that time period too.  He also said you would start feeling more and more crummy each day as treatment continues and the chemos build up in your system. (heavy sigh) You were very patient, Tucker was extra nosiy and talkative today though.  Very unlike him, but it turned out to be a good distraction for you.  You were perfect for the nurses while they plugged you  in and took some blood.  Then they told us they hadnt gotten your chemo yet, so we'd have to go down to the RTU (rapid treatment unit) first for the Back Poke. Then come back up for the chemo. (double heavy sigh) When they said that, I knew we were in for a long day...

We could barely hear the docs, Tuck was so noisy!
Watching Shrek the Third.. a good
distraction cause you were anxious to
get it over with.
RTU went well, but seemed like it took a long time. We watched Shrek the Third while we waited, and then I carried you back to get your sleepy medicine.  The nurses distracted you with a big purple baton that had water, and glitter, and fishies in it. The anesthesiologist gave you some meds and you got droopy, then he "gave your tubey a drink of milk" (the sleepy medicine looks like milk), and you were out. Its a strange mix of feelings to hold your baby while she gets put under anesthesia.  On the one hand its wonderful that you dont have to be awake while they inject your spine with chemo, on the other its horrible to feel you go limp and lifeless in my arms. Then have to lay you down on the hospital bed and leave you alone in a room full of drs and nurses.  I hate that part, but at the same time I'm always glad when you want ME to carry you in (instead of dad) because then Im there for you till your fast asleep.  Its emotionally exhausting but worth it.

You woke up really funny.  They came and got me to help them wake you cause you were struggling a little.  You were OUT! I rubbed your back, talked to you, and offered you chips...you didnt budge.  I kept at it, then the nurse tried to take your temp, and you shot straight up in bed and smiled at me. You said, in a very slurred voice, that you wanted to sit up so the nurse lifted up the head of the bed.  We were asking you questions and you were moving really funny.  You finally picked what kind of chips you wanted, but had a hard time eating. Me and dad couldnt stop laughing...you were so funny.  I took some video of it. 

video



Once we were ok'd to leave we headed back up to clinic so we could get your chemo.  You got Anzemet first, which is an anti-nausea drug they give to keep you from getting sick. You got Doxorubicin next, which is the reason they give the anti-nausea medicine. That took about 15-20 minutes.  Then you got the Vincristine. Which only takes about a minute through your port.  Each medicine doesnt take long to get, but by the time they get it, and set it up and actually administer it....we didnt leave the clinic till 1pm. Needless to say we were all exhausted...you said you wanted to hurry home and have breakfast.  You wanted some Frosted Mini Wheats "so bad".  Dad and I were happy to oblige. 
Getting Anzemet, and snuggling
Tucker-man.
Getting Doxorubicin. Notice the plastic around
the chemo, its light sensitive.
Getting the sticker taken off your port access.
You HATE this part, but look at you be so brave anyway!
Stickers off! just need to unplug and then we
can go home...Yeah!


I am always amazed at the hospital staff and the way they run things.  They have Rachelle (your favorite "nurse") who is a Child-Life Specialist.  Her whole job is to help kids cope with whats going on.  Whether its keeping them distracted with games and toys, or calming them down and validating their feelings, or empowering them by giving them choices. You quickly fell in love with her and knew she was on your team.  You always look forward to seeing her.  The nurses are amazing too.  They have a way of being caring, and also tough.  They always ask how our WHOLE family is doing, and how everyone is coping. And theyre genuine.  I dont know how they do it, but Im grateful they do!
Rachelle, the "toy nurse"
 I found myself watching you excessively all day today,  searching for any sign of discomfort, or sickness.  I did see some, but not near as much as I thought.  You were definately more tired after todays treatment, and you complained more of "wobbly legs", and back pain.  BUT you still wanted to play with your friends when you got home...so I let you!  I guess you better do what you can while your up to it. 

We ended the day with your first dose of steroids and prevacid, and you were nervous, but you did great.  Your always nervous to try a new medicine, but you never cease to amaze me.  You are so brave and trusting, and patient, and I love you so so much...I dont know how you do it.

6 comments:

  1. Wow, I don't know how you do it, Mac. Her video was funny, what a cute girl. I hope McKall does ok with this next phase. How exhausting for y'all. Good luck.

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  2. Lea, you are such a beautiful mommy! I am aLi's mom and found you through her blog. Even though you are going through probably the most difficult thing you'll ever have to go through, you are helping McKall in such positive ways. What a little sweetie she is!!! It kind of breaks my heart to read all this, but I am so grateful they are able to treat her.

    Thank you for giving us a glimpse into your challenges and your sweet family. You are truly amazing! And know that you are in our prayers always.

    God Bless,

    Jane

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  3. What a lucky girl to have such amazing parents! She coudn't do this without you and you will be so happy to have this when it is all over. I love you guys! If you need anything please call us.

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  4. What a long day. It breaks my heart that McKall has to go through so much. McKall is amazing because she has AMAZING parents. We love you all.

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  5. I loved the part about McKall waking up....You need something to laugh at and to help lighten the day...I loved the vedio...Keep up the good work and give McKall a hug for us...WE pray for you all the time and have put not only McKalls name in the temple but your whole family....Cancer affects every one of you...How could it not???? We love you all and think about you every day..Keep your eyes and heart open so you can notice even the smallest blessing from our Father in Heaven...Remember he is there and he knows what McKall is going through...He will be with her even on the roughest days...Don't forget that...He is there for you too...A restful night or nap with out pain is a blessing...I learned that from Grandma Brown...When she was down and in so much pain...She thanked our Heavenly Father for a 5 min rest from the pain...He IS there..
    We Love you...Marlene and Vernon

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  6. Wow you are all amazing! I can't help but get emotional when I read what McKall and all of you are going through. It really puts life in perspective. We love you and are praying for you!

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