Archive for December 2013

December 26th, 2013. Day +1021. Charlotte’s clinic appointment.   4 comments

We have had a terrific month.  Charlotte did a wonderful job singing in the Elementary School Holiday program.  We loved seeing her on stage and smiling and waving at us!  I still find myself humming “Hearts around the world” and a few other songs they did.  The following weekend, Charlotte and her friend Brady played Mary and Joseph in the Church nativity play.  They were so cute.  And Molly was a happy little sheep!

We had wonderful Christmas celebrations this year.  Lots of family.  Lots of toys.  Lots of fun and laughter.  Lots of food.  And lots of eggnog!

We had Charlotte’s first appointment with Dr. Diamond since July.  Charlotte did very well with her blood draw, only crying a little bit and not yelling, fighting or screaming.  And she laid perfectly still for the half-hour long echo-cardiogram and didn’t make a peep once during any of it!  After that we saw Dr. Diamond and she went over Charlotte’s echo and CBC results.  Perfect, perfect were her exact words  (WBC  5.8, Hemoglobin 13.1, 263k Platelets and 2800 Neutrophils  .  We are so thankful for that.  I know that today was a very rough day for Amy and me.  We were both on edge and very nervous about how everything was going to go and we just wanted it all over with.  We couldn’t have asked for things to go better and we are so proud of her!!  After discussing how good Charlotte looked,  Dr. Diamond mentioned that she was at a conference earlier in the month and said there is much more evidence now showing that we made the right decision in 2010 in going straight to transplant rather than playing the waiting game.  She stated that there are more statistics out there  confirming that chemo alone would not have been the cure for her AML-M7 and complex cytogenetics.  We assume that “statistics” mean children who have had relapses or have passed away from their disease.  We are so fortunate to have such a well matched donor in Erin.  And we are so happy and grateful now to call her family!  Dr. Diamond continued to mention that our main focus is going to be trying to keep her heart healthy by proper exercise and diet to prevent complications from the harsh side effects of the chemotherapy.  Before we left, we got one more piece of good news.  We won’t be coming back to clinic until December 2014!!  While we love seeing Dr. Diamond and hearing the good things she has to say, we won’t miss putting CJ through the blood draws and the other appointments.  She has been through enough already, we are just looking forward to her spending another year as a regular kid!  Thank you again for all of your prayers and thoughts.  We hope everyone has a safe and happy New Year!

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Posted December 26, 2013 by L. Elske in Uncategorized

December 3rd, 2013. Day +998.   5 comments

Wow….almost at 1000 days!!!  I just wanted to write another long overdue post to let everyone know that we are still doing well and enjoying the wonderful and blessed holiday season.  Today Charlotte had her yearly eye appointment to check for eye related graft vs. host and everything looks great.  He doesn’t recommend that CJ continue to see him any further unless Dr Diamond thinks it needs to be done.  So that might be one less appointment to worry about.  We see Dr Diamond again on December 26th for Charlotte’s 6 month labs and also an DSC_0682EKG/Echo.

We had a wonderful Thanksgiving day at Lyle and Jenny’s place last week.  Molly and CJ were so happy to play with Julia, Meredith and Sydney.  They were tired and completely worn out by the end of the night.  Jenny took this nice picture of us, probably one of the few that might have captured all of our smiles and open eyes.  We are so thankful for all of the blessings in our life  and we just want to again say thank you to our family, friends, Erin, AFCH staff, and every one of Charlotte’s Angels who have prayed for and supported us in one way or another.

In the spirit of the holidays, if you are in the mood for a real tear jerker, I have a Christmas movie suggestion for you.  In late 2011, “The Heart of Christmas” was released.  It’s now available on DVD, Netflix and it’s even on YouTube.  It’s the true story about the family of Dax Locke, a little boy who lost his battle to AML-M7 in late December 2009-the year before Charlotte was diagnosed with the same disease, and how the community rallied around the him and his family to bring the Christmas spirit to his neighborhood before he passed away.  Some of you may be hearing the Matthew West song of the same name playing on the Christmas music channels, or another one he did called “One Last Christmas”.  Both of the songs were written about Dax and his family and, once you watch the movie,  will likely make you think twice about being thankful when you hear them.  We knew about the movie shortly after it came out but were unable to bring ourselves to watch it in 2011.  I talked with Dax’s mother a few times over email and she is such an inspiration to us and anyone fighting this terrible disease.  Amy and I watched “The Heart of Christmas” last year and are very glad that we did, though it wasn’t an unemotional time for us.   It is a very touching and heartwarming story, and really brings home the true meaning of Christmas.  We hope you all have a safe and happy holiday season.

Posted December 3, 2013 by L. Elske in Uncategorized