January 9th, 2011   5 comments

Today was another very good day for Charlotte.  Lots of playing and running around after a great night of sleep.  She had a lot of energy and ate well.  Her numbers are still going down, though her hemoglobin count went up unexpectedly today but the doctors say that is nothing to worry about.  Her “buddy” came to visit today for an hour and they played nicely together.  She was only in her stroller for a few minutes this morning otherwise she was very content to walk (or run) the halls without it.  Tomorrow she will need her port re-accessed so we hope that goes ok.

Molly was pretty good today too.  She ended up getting a little fussy towards the end of the night tonight.  But during the day she was probably feeling a little better.  We are still anxious to talk with her doctor about the dosage levels as the pharmacist told us that she was getting the lowest dose for her age/size.  So hopefully we can get that increased and have a little easier time getting her to sleep so we don’t keep the rest of the floor awake at night!

We are getting more and more nervous to have our first meeting this week with Dr DeSantes, the transplant specialist.  We were given a huge binder to read about the transplant process and it has given us many questions.  We mainly just want to know that she is going to be ok.  But the realistic part of us reminds ourselves that the doctor won’t be able to tell us that.  So then we automatically wonder if this is the right decision and then we worry about the outcome and the transplant process itself, and then we get all goddamn depressed again!!!

So it was another rough night for Amy and I.  Though we try our best to keep each other thinking clearly, we usually completely fail, and just get mad at each other, and end up crying ourselves to sleep, after we write long run-on sentences in our blog.  But we really don’t know what else to do for each other, or for ourselves, so this will have to do for now.  We just love her so much and wish she was better.  And we found out today that right now there are three more families here with an AML diagnosis (though it appears the kids are all in their later teens).  It is rare that we see another AML case at all (they said they see about 6 of these a year), so to have so many families here going through the same thing that we are is pretty scary.  We pray everything works out for all of them as well.

Posted January 9, 2011 by L. Elske in Uncategorized

5 responses to “January 9th, 2011

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  1. Love the picture of Molly. What a great smile you were able to capture. We hope she keeps improving. My youngest had acid reflux, and “Good Start” brand formula was what she seemed to tolerate after a dozen switches. Have you also tried the gas-reducing drops? I would mix some of it right in with formula in the bottle.

    Don’t be so hard on yourselves. You are on a rollercoaster ride of emotions. The fear of the unknown is the worst fear. Try to remember that you aren’t really mad at each other – you are mad at the situation. Keep in mind that your courage is inspiring to the rest of us. And remind yourselves that all of this, even the crappy parts, are all possible because you love each other.

    We pray for you all every night, and you are often in our thoughts throughout the day.

  2. Take each day at a time and with Charlotte she will have ups downs. The baby will come out of it to. They both are so cute and the smile on the baby tells you it’s ok Daddy & Mommy. Burned a candle for you this weeks chin up guys.

    Joe & Sue Kaminski
  3. Lon & Amy, you are amazing parents to both your children. Keep praying and supporting one another, and we’ll send our love, hugs and prayers for miracles in Charlotte’s treatment.

  4. Again, thank you for the videos from the other day. Charlotte seems to be a normal 2 year old…running and laughing.

    She has THE BEST parents and family in the whole wide world. God throws all of us curve balls once in a while. He throws the toughest ones to the strongest ones. Keep your heads held high. I truly believe that Charlotte is a determined little girl and will make it through this and has wonderful parents to help her through the toughest parts.

    Hugs and prayers!

  5. Your family has our utmost admiration for the way you are handling this situation. You are showing us all how human you are with all the decisions you have been forced to make. Our love and prayers are with you always. Keep your chins up!!!

    Steven & Terry Licitar

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