March 2nd, 2011   10 comments

Charlotte had a pretty good night of sleep last night.  There were only a few interruptions throughout the night and she slept through most of them.  Amy on the other hand, had a pretty restless night trying to keep CJ from getting tangled in her IV lines.  Since they are now coming out of her left sleeve and not the bottom of her shirt, it is easier for her to get them caught on her hand or around her body when she

just playin'

moves about in her sleep.

Charlotte will be receiving 16 doses of Busulfan over the next 4 days, every 6 hours.   She will also be on anti-seizure medicine since that is one of the more common side effects of the chemo.  We need to put cotton balls in every diaper so they can monitor her urine levels for the next 8 days too.  Her first dose started at 6am so Charlotte figured that would be a good time to get up as well.  Why not?  The sun was already showing a little bit of light so it must have seemed like the best time.  So we started our day pretty early with some TV and toys.  She impressed Mommy and myself by being cooperative with her morning oral meds again!  She put up more of a fuss at home with a quarter of the medicines.  She ate almost a whole piece of french toast for breakfast and then played some more.  She already knows about the stash of new toys that we brought along from Grandma’s good friend Yo, and the toys from the AFCH Child Life Specialist, so she would play with something for about 20 minutes, then head towards the cabinets of goodies and request something different, something new.  So we tried to keep her occupied with opening a few items today, but she is on to our tricks….I don’t know how long the seemingly endless supply will last!  She also spent some time in the halls walking around and playing basketball.

CJ decorating her room with pictures of her cousins and puppy.

CJ’s next round of chemo started at noon and she ate a little lunch.  She went down nicely for her nap at 1pm and only slept until 2:30-2:45.  She insisted she was up and all done sleeping.  She watched more TV and played more and before we knew it, it was time for dinner.  She had another almost full helping of spaghetti-o’s (she ate the full helping last night), and was pretty happy most of the night.  She received another dose of chemo at 6pm.  She also had a bunch of oral medications to take at night and she breezed through them again!!!  We couldn’t be more proud of her.  She made us tear up this morning when we saw how good she was, and tonight was no different.

doing a great job brushing her teeth at bedtime!

We got a list of all of her oral and intravenous drugs she will be on for the next few weeks.  It looks pretty scary-it’s over two pages long.  I asked our nurse how long the longest list she had ever seen was, and she said that Charlotte’s was probably the longest.  But they have only been doing this for a few months so I am sure there have been many kids with more going into them in the past.  And Mommy, wanting to know more, asked her explain the drugs further.  Some of those listed are preventative medicines for blood and platelet transfusions and some are one time only doses.  Also. it turns out a lot of the drugs on this list she may not even need, they are just already prescribed so they are readily available should she have a reaction to the transplant or other issues.  So Amy was able to confirm that it only looks scary and that already makes us feel better.  We know that we are in the best place for Charlotte and everything they do, no matter how scary, is for her benefit.  We feel confident that they have her very best interests at heart and they will take care of her like she was their own.  That’s good enough for me.

Considering our beautiful little girl already received three doses of poison today, and we have many more to go, it was a pretty damn good day.  She was only crabby a couple of times, but we were quickly able to determine that she was tired or hungry and she got better after we took care of those needs.  I have written it before many times, but she is being one helluva trooper.  She is giving Amy and I strength with her courage and determination.  I am sure as the weeks go on, she will get less and less energetic, and even more needy and miserable.  But considering the last 6 months she has gone through, I know Charlotte won’t give up.  Neither will we.

Thanks for all of your wonderful comments and prayers.  We read each comment, and I know He is listening to every prayer.

Posted March 2, 2011 by L. Elske in Uncategorized

10 responses to “March 2nd, 2011

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  1. Oh the picture of Charlotte hanging up her pictures gets me all choked up…there was a similar picture when she was first admitted and it got me then too. She is such a big girl and she takes things with such grace. Glad to hear today was also a good day. Never fear the toys running out…more will be arriving tomorrow from Sun Prairie. Sending love from our house to “yours”. 🙂 🙂 🙂 🙂

  2. It is so rewarding to see and hear how well things are going. You kids and Charlotte just keep us posted and let us know of any thing that you need. Molly is doing just great under G’ma’s watchful eyes. The prayers continue to go out for ALL at AFCH. Just reading your nightly post helps make a brighter day for those of us on the outside. Love from G’ma and G’pa E

  3. Wow. You are all an inspiration of strength and faith. We keep you in our prayers. And if there is ANYTHING we can do, please let us know.

  4. Charlotte really is something! She’s such a special little girl and SO strong. Your attitudes really are inspirational!

  5. What a brave little girl and brave Dad & Mom. Before you know all this will be over with and you can all be together again. I know Molly is in good hands with the grandparents.
    Thanks for the update Lon.

    Joe & Sue Kaminski
  6. Just a note to say I love you all and pray each day for you. Words cannot express what I want to say and that is strange for you know what a “gabby” I am!! May God hold you close and surround you with strength and faith . What a gift you give to each of us with your determination and courage and marvelous attitudes! I thank God for each of you and send my love and hopefully some memories to make you smile in times when you need a lift! Mary B

  7. TRULY AMAZING THIS LITTLE GIRL AND HER FAMILY AND SUPPORT GROUP. I FIND A TRUE BLESSING IN MY LIFE JUST FOR THE CONNECTION….CONTINUED STRENGTH TO YOU ALL, AND MOST OF ALL TO CHARLOTTE. BE ASSURED THAT THIS WILL BE A LIFE TESTIMONY, BECAUSE GOD IS WATCHING AND HE IS BLESSING EVERYONE AND KEEPING THE FAITH IN A MIGHTY POWERFUL WAY.

  8. Absolutely love seeing Charlotte so active in all ways, hearing about her eating and great attitude! We’re all praying for strength and good days.

  9. Prayers for strength to all of you. I am amazed and inspired by all of you. Your strength, love and faith will guide you through this.

    Dawn Weckerle

  10. It sounds like all is going well. Keep up the good spirits Lon & Amy. You inspire me so much!! It also sounds like Charlotte may have many toys to keep her occupied for a while, but…could you give us an idea of what she doesn’t have…My girls ask about her each night, and when I told them she had to go back to the hospital to keep getting better, and the baby was going to stay with grandma & grandpa, they asked if she would have things and people to play with. They’d like to send her a gift.

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