December 6th, 2011. Day +270   4 comments

It’s hard to believe I have been ignoring you guys for another two weeks.  My apologies for that.  Things are pretty darn sweet at home, I don’t mind saying.  Molly has been feeling better the last two weeks, even sleeping through the entire night a couple of times.  And she started to walk this past week so that’s been exciting.  Charlotte’s nose dried up in time for the Thanksgiving weekend, but shortly after that her nose started to run again and she has been fighting this third cold since.  But she is plenty happy and she seems like she has lots of energy.  Plus she lets Daddy sleep through the night (I get CJ duty and Mommy takes Molly) so I’m not complaining.

Today Charlotte had her monthly clinic appointment.  The last couple of days, Amy and I tried to prepare her for the new method of drawing blood and she seemed pretty put off by the idea.  But today she was very well behaved when she had her arm poked.  There was a little bit of hollering and crying but she recovered quickly and we were soon on our way to see Dr DeSantes and his team.  Charlotte had prepared little Christmas goodie bags of chocolate kisses to hand out today.  She really got into passing them out and even gave one to the phlebotomist with tears still in her eyes.  On the way we saw Dr Diamond briefly and she was thrilled with how Charlotte looked.  It feels so great to hear her say that, we really value her opinion since she has been so involved with Charlotte’s journey since the first day at AFCH.

During the appointment, we had visits from Dr Hoover-Regan, Bethany (the hemoc nurse), Sharon, Dr DeSantes and even Dr Boyden (the fellow who was on P4 for the majority of CJ’s treatment).  They all agree that Charlotte looks like she is doing really well and we don’t mind hearing any of that.  Her GVHD rashes are still sort of hanging around, but they are usually quite faint and we treat them easily with hydrocortisone cream.  We were told that her labs weren’t in yet and Bethany would call us tomorrow with those results.

It was a swell visit and we didn’t stop there.  We headed up to 4th floor to visit the staff there and Charlotte was thrilled to continue handing out her chocolates.  This was the first time she has been on P4 mask free since her transplant admission and we were so excited for everyone to be able to see her smile.  We were fortunate to see Tracy, Natasha, Emily, Jessica, Katie, Mary Ann and Lisa!  It was so nice to see everyone again.  Some of them have been very instrumental in getting Charlotte where she is today.  Emily was working with Katy the first weekend CJ was admitted and Lisa and Tracy held our hands throughout the latter rounds of chemo and transplant.  They were all so impressed with how she looks and how much she has grown since they have seen her last.  We also brought Molly with us in the hopes that we would have time to visit.  Most of them haven’t seen her since January so they all loved to see how she has changed.  We took a walk down the hallways before we left for the lobby to check out the Christmas tree.

While we were walking through the lobby, we saw another familiar face-Dr Sabrina Wagner.  She was the attending physician at St Marys last September when we were admitted for what we thought might be ITP.  Her experience led her to dig further and the very next day we were faced with a leukemia diagnosis.  Not the news any parent wants to hear, but we believe that Charlotte’s good health at the time of her early diagnosis played a large part in her ability to withstand the harsh chemo with few side effects.  We owe countless thanks to Dr Wagner and Dr Dvorak at St Mary’s for their dedication to getting things right.

On the way home, Amy called me sounding in a panic.  She was on the phone with her mother when the call waiting beeped in.  She saw that it was the hospital calling!  Words cannot describe the fear we feel when we receive an unexpected call from the hospital.  She answered and it was Dr Boyden calling.  This is quite unusual and got Amy even more worried.  But she was just letting us know that her CBC results were in.  We don’t know the exact numbers, because Amy was too busy trying to drive the van and dodge the endless downtown pedestrians, while recovering from her small fear-induced heart attack…but her WBC was something like 8.9, hemoglobin 12.3, 6000ish neutrophils, and 320k-ish platelets.  I say nice.  Amy says beautiful.  Charlotte requested that we eat at a restaurant tonight, so we did.  A terrific ending to a fabulous day.

Please continue your prayers for Mitch and Neal and each kid in this (and every) hospital who’s suffering instead of celebrating this holiday season.

Posted December 6, 2011 by L. Elske in Uncategorized

4 responses to “December 6th, 2011. Day +270

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  1. What a wonderful Christmas present! I’m so happy for you all. God is good all the time!

  2. Can’t get a whole lot better than that! It’s amazing to think how far you have came since the last holiday season and we are so thankful that you are at this point. Molly is adorable and I’m sure will keep Charlotte on her toes, but what fun they both will be this Christmas season. Even though there’s many prayers to be said, it’s so much easier to give ones of Thanks!

  3. Always happy when it is time to check my mail here. The girls look great and Xmas should be the best.

    Joe & Sue Kaminski
  4. Happy Birthday to Amy on the 16th! It must be #35 as Eric’s is #36. Glad to hear all is going so well with Charlotte. We continue to pray for your whole family and your extended friends. We wish you a very Merry Christmas and an especially Happy New Year. God’s Blessings!

    Jim & Bunny Gitter

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