Molly has still not been feeling the greatest this last week.  She saw Dr G again on Thursday morning who diagnosed her with an infection in her right ear now.  The prescription is for another 10 days on a stronger antibiotic.  The side effects can be pretty loose stool so she is also on a probiotic capsule a couple of times a day.  Her fevers continued thoughout the weekend, not getting much better until Monday.  But she has been fever free since then and is starting to get back to her old self a little each day.  Her nose is still a little runny, and Charlotte’s nose hasn’t dried up completely yet, but they are both quite happy, and we have learned that that alone says a lot.

I looked back on the blog to where we were a year ago.  It was an emotionally draining time for all of us with a new baby and a confusing biopsy.  That combined with Dr Diamond’s desire to start another round of chemo earlier than we had expected really got us concerned.  Amy and I weren’t sure if we would have our Charlotte with us at this time this year.  We spent a lot of time talking about “what ifs” and uncertainties and those never left us in a positive state of mind.  We just knew we had to stick with the plan, even though it could change daily.

Happy birthday to Molly who turned 1 on Sunday.  She has truly been a blessing to our family and we love her dearly!

 

It’s Thanksgiving again, and this year we have even more to be thankful for than last year.  It’s easy to remember some of the big things I am thankful for:
Charlotte’s blood and platelet donors-for keeping her alive during the poisonous chemo rounds.
Charlotte’s bone marrow donor-for selflessly giving Charlotte a second chance at life, even after others said “no”.
The doctors and staff at AFCH-for being our second family and keeping us in the right mood during Charlotte’s rounds.
Our families-for being there every day, then and now.
The other families we met during our stays.  The courage and support they provided us was always needed, and so personal.  They are some of the few who truly understand what lives are like behind those doors.

But I am also thankful for the little things:

Charlotte’s hair has been growing back.  One never expects to get used to shampooing your daughter’s little bald head, yet I did-and I didn’t mind it.  But of all the things to make me smile over the last 6 months, few have had an affect on me like her new head of hair has.

You know that thing that you do as a parent when you are going to sleep and you check on your little ones before you head into your bedroom?  You know when you make sure you pull their covers up tight?  We do that too.  But I never thought I would get used to feeling her forehead for a fever every night before I slept.  I am thankful that it is now a thing of the past-like it almost never existed for a year.

I’m thankful for the opportunity to watch our two daughters grow up with each other in their lives.  It’s easy to take things like this for granted, but I try not to anymore.

Happy Thanksgiving to you.  Thank you for your support.

Today was a great clinic appt especially since Charlotte did not have to get any pokes because labs were drawn last Wednesday before her port removal.  So today was just a chance for Sharon (NP) to physically take a look and listen at Charlotte.  And for the most part, Charlotte was great and didn’t fight the exam…until she had to let Sharon look at the patches of dry skin.  Sharon confirmed that these spots are most likely GVHD and is pleased that they are controlled with the Hydrocortizone cream.  She said that the hope is that they don’t get worse and eventually just “burn” themselves out-nothing to worry about at this time.

Sharon reassured us again that although Charlotte’s hemoglobin, magnesium, and phosphate were lower again, that this is still very normal.  She said Charlotte’s kidneys are still flushing the mag and phos out, but she does not feel we need to return to supplements at this time.  Yeah!!

But do you know the most exciting news?  If Charlotte still spikes a fever of 100.4F, we will still have to call AFCH to notify them, but because she is no longer considered immuno-suppressed and her central line has been removed, we can now contact her primary physician at Dean Clinic to determine the next course of treatment.  Charlotte hasn’t seen Dr G. since September of 2010 when her first CBC results led us to St Mary’s and then AFCH.

We made an appointment to visit again in three weeks since her latest CBC is already a week old now.  And we will see the surgeon again to have him check up on her port site, which everyone thinks is looking fantastic.

We also got to see Lisa, CJ’s 4^th floor NP who was by our side every time we needed her throughout the first 4 rounds and her BMT.  She was so impressed with how good Charlotte was looking and acting.  Lisa hasn’t seen her in quite a few months so it felt good to hear her say that.

And Charlotte got to visit briefly with Katy, one of her primary nurses.  They were both so happy to see each other again-it was so sweet.

All in all, it was a darn good day!!

Just wanted to send a quick update.  Charlotte slept restfully through the night and was very happy when she woke up this morning.  Last night the fevers never got higher than 99 and she has been fever free all day (knocking on wood).  She has been nothing but happy all day today-not complaining about her port area hurting and she took a nice long nap this afternoon.  So we are hoping it was just part of the little cold she and Molly are going through.

Please continue to pray for Mitch, Neal and Alyse and Kate.

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.