November 9th, 2011. Day +243. Charlotte’s port removal

Sorry for the lengthy delay between posts.  Things have been going great at home.  Last week Amy and I were part of a panel discussion about the nursing Charlotte received during transplant as a way to train nurses who were just starting to work with bone marrow transplants.  We represented a pediatric patient, while there was another woman present to give an adult perspective.  Amy and I both received chills when she told her story and we discovered that she too had been diagnosed with AML-M7 and had just celebrated her 4th year post transplant.  It was so nice to meet someone with the rare M7 who was doing so well.

Overall Charlotte has been doing very good.  We’ve discovered over the past weeks several dime sized circles of red dry skin on Charlotte.  Amy discussed it with the NP over the phone and the NP feels it is graft vs host disease, thus we need to apply her Hydrocortizone daily.  This seems to be doing the trick.

We spent the weekend at the cabin up north.  Charlotte and Molly had a lot of fun playing with their cousins and walking around the “forest”.  The Wagenknecht family surprised us with a birthday party to celebrate all of the  birthdays that we missed celebrating together this past year.  It was very unexpected, but Charlotte sure loved the presents and cake!

On the drive home Sunday, we noticed Molly having a bit of a runny nose.  It got worse and by Tuesday, Charlotte was sneezing and sniffling all day too.  We hope they can shake it soon.

Today Charlotte had her port-a-cath removed.  We had to get showered and dressed and get Charlotte out the door by 6:15am.  We were on our way by 6:20 so we were doing pretty well.

We made it to the hospital on time and Charlotte was very cooperative with the staff getting settled into our room and having her vitals checked.  We met the surgeon and anesthesiologist and she got her last poke in her port while only crying a little bit.  After labs were drawn and all parties were ready, she went down the hall with Mommy to the sleepy room like a big girl.

The doctors arrived an hour later, explaining that all had gone as planned and we were brought to the recovery area where she was just waking up.  She was such a trooper waking up and trying to be happy right away.  We stayed in the hospital for a few more hours and were released home.

Her CBC numbers were a little low today, her WBC was 3.5, hemoglobin was 10.5, 234k platelets and 2140 neutrophils.  We have our monthly checkup with the oncologists next week and will discuss the results then.

She was such a big girl and we couldn’t be more proud of the way she acted and responded today.   When we told her the plan for the day last night (that she would get to have her port taken out) she got a big smile on her face and jumped up and down.  Her biggest fear today was getting the IV while she was asleep.  No matter how we explained it to her, she thought she was getting a PICC line again and I think she was pretty happy when they were able to take the IV out and send us home.  We kept the port, as we did her PICC line when it was removed.  They were both just too valuable to throw away.

Amy remembered what Dr Lund (the pediatic surgeon who installed her port) said to us on the morning of CJ’s diagnosis last year.  He was talking to us about the procedure and we must have looked so concerned and sickened that he said we should try not to worry, but to think about the day it would be removed-that we could have a little party to celebrate.  I had totally forgotten he told us that so when Amy got Charlotte a little chocolate cake, it made both of our days.

When we were leaving the hospital, we stopped at the pharmacy/gift shop for our customary after clinic toy and Charlotte saw another young girl named Samantha, with a whole wagon full of get well gifts and balloons.  It looked like she was going home.  She was so nice that she cut one of her balloons off and gave it Charlotte.  What a sweet gesture.

Charlotte had a great nap at home and woke up in a little pain.  She was saying her port area was hurting, which we knew could happen.  So before giving her some Tylenol, we checked her temperature.  It was almost 100 degrees.  She has been acting and eating just fine tonight.  It has been hovering around 99 the rest of the night so we will keep an eye on it.  We are hoping it doesn’t land her a return trip so soon.