March 6th, 2012. Day +361. Charlotte’s one year post transplant clinic appointment.   9 comments

Charlotte started the day out early at the second floor of AFCH getting some blood drawn for todays tests.  She had  the usual CBC labs run, as well as the engraftment study, and titer tests to determine what immunizations she will need to receive again.  She did very well with the phlebotomist this morning.  Nani was an old favorite of ours when they used to come into the hospital rooms early in the morning to pull blood for daily labs.  She was always very friendly and we missed seeing her.

Up next was the echocardiogram to determine how much damage, if any, the transplant chemo did to her heart.  She behaved pretty good for the tech during the test, until she was told they were finished.  It was then that she started to really cry and let us know she wasn’t thrilled with laying there for that amount of time.  Once we had her shirt back on and told her what was up next, she recovered quickly.

She left the clinic and headed up to the 4th floor to see some of her former nurses and surroundings.  We were very happy to see all of the nurses, NAs, NP and doctors and even the custodial staff!!  They all really become your second family when you spend so much time there.  They were all impressed with how much she has grown and how good she looks.  Many of them haven’t seen her since she left the hospital last April, all loaded up on steriods and looking like a very different girl.  Charlotte also loved showing them her photo book of her Make-A-Wish trip.

CJ then had her hearing test.  She started out really happy and cooperative, but a little over halfway through the test she started getting unhappy saying the headphones were hurting her ears.  The only other option they had was in-the-ear headphones and she wanted nothing to do with them.  It took quite a bit of convincing but she ended up giving the headphones another try.  It didn’t last more than a few minutes and she was just too unhappy with the discomfort and was crying and hollering too much for the test to continue.  The techs did say that she had completed enough of the test to determine that there wasn’t any sort of measurable damage that they would expect to see from the antibiotics/chemo used in the transplant process so we were happy to hear that news at least.

She ate a great lunch at the cafeteria and threw some coins in the water fountain and then left for the UW Station for her vision test.  The doctors there are terrific and were very happy with how well she was seeing, noting no decline from her last visit in September.  We thought they were planning to dialate her eyes again but they didn’t feel the need to and said she doesn’t need to see them for another year!  That is more welcome news.

After that was our regular HemOnc appointment with Dr DeSantes.  Instead, Charlotte was seen by one of the two new pediatric transplant doctors today, Dr. Shin.  The one year post transplant mark is a pretty big milestone in the BMT world.  Charlotte is now off all medications as of today, with the Dr. having dc’d her [preventative] acyclovir.  We loved how the nurse and doctor both stressed that we should now be trying to regain some normalcy by taking CJ out to do more regular preschooler activities.  They mentioned sports leagues, swimming lessons, etc.  It was a wonderful thing to hear.  We have been conditioned to try to keep her isolated and [hopefully] healthy since the beginning of this journey so we welcome that challenge.   The results of her echo already came back showing all normal ranges, no noticeable damage.

Charlotte’s CBC numbers were: WBC  6.9, Hemoglobin 12.4, platelets 299k, and 3710 neutrophils.  All within normal ranges-all perfect.  We won’t know the results of the titer test for a couple more days, and the engraftment study will take 2 weeks.  The appointment wouldn’t have been complete without a visit from Dr DeSantes himself though.  He did peek in towards the end of the hour and was very smiley and happy with her progress.  We have known Dr DeSantes for a year and a half now, and we know that his smile will tell us more than his words ever can.  He also told us that Charlotte won’t have to return to the clinic for three months, the next visit being with her original primary oncologist, Dr. Diamond.

We are truly thankful for the staff of AFCH, Dr. Diamond and Dr. DeSantes, and for Charlotte’s selfless bone marrow donor.

Posted March 6, 2012 by L. Elske in Uncategorized

9 responses to “March 6th, 2012. Day +361. Charlotte’s one year post transplant clinic appointment.

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  1. Way to go little Charlotte! The big #1 is just days away and she’s already passed her tests 🙂 Enjoy the fun, normal activities!!

  2. Couldn’t be happier!!!! Looking forward to walking across the street and visiting! Great job Charlotte, great job Lon and Amy!

  3. WOW – Excellent post. Charlotte is one tough little girl and having gone through all those treatments and coming out so well is a testament to that and the power of prayer. Congratulations and welcome back to the almost normal world!

  4. Wonderful, wonderful!! I’m so happy for you guys!

  5. Praise The Lord such wonderful news. Am so happy for all of you. Enjoy being a “regular” family. You are certainly an inspiration to others
    GOD BLESS YOU ALL. 🙂 sharon

    sharon schulteis
  6. Great news indeed. Charlotte is really growing and I love her hair – adorable. Bet both girls are anxious for Spring and Summer (so am I) and it’s just around the corner!

  7. Well that appointment couldn’t have gone much better! What wonderful news, especially that there are no signs of damage from the chemo. It is amazing what little, growing bodies can do! We’re looking forward to doing lots of “regular preschool things” with you guys…starting with “jumping” tonight! 🙂 🙂 🙂 🙂

  8. PRAISE GOD!!! What Fabulous News!!! I have to tell you this: hearing CJ’s precious little voice is a blessing that delights my heart to no ends! What jewels you have in both Molly and CJ. “Normal preschool activities.” Wow!

  9. I am so glad to hear that her 1 year appt went so well! What a relief to be able to do typical preschool activities, how fun!! I know you guys will enjoy every moment. 🙂 we will still keep you all in our thoughts and prayers for continued health.

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