March 29th, 2011. Day +18   3 comments

We have been here for one month today.  Tonight will make our stay the longest one yet.  We figured it would be, but so far we are doing pretty good with it.  Charlotte slept until about 9:30 this morning.  She

the nurses in their costumes while Amy, CJ and I are just hanging out

woke up well rested and pretty happy.  We hung out in the chair watching TV while Mommy and Daddy alternated showering and breakfasting.  Amy left this morning to meet Grandma E and Molly in Sun Prairie.  Molly had a doctor appointment so Amy took her to that and Grandma E came to visit CJ.  She was happy to see Grandma and was ready to play immediately.  They played for a couple of hours until CJ needed to have a nap.  During that time she was visited by the attending physician and Dr Diamond stopped in to see her too!  They were all happy to see her progress today and actually discontinued one of her antibiotics, the every 4 hour Vancomycin.  So that really made the nurses happy because that one drug kept them pretty busy.  They also agreed to lower her TPN (IV nutrition) to 20 hours per day instead of 24.  Tomorrow they will consider losing another antibiotic if she stays fever-free, then again the next day for the last anti-fungal IV medicine.  Dr Diamond told us that she was on this weekend and even started mentioning maybe thinking about going home sometime next week.  Certainly there is no talk about it soon, but it was good to hear that she is progressing the way they would like her to.  So far it was a pretty good day.  She was happy, active and playing and fun to be around.

nurse L sorting out tubies while Charlotte tires of my picture taking

Her WBC was at 0.9 today, with 243 neutrophils and 15k platelets.  So she got a platelet transfusion today.  Her monocyte count was also up so Dr Diamond thought that was good news.  Then this afternoon, she started to really start coughing with more regularity and her nose started to drip.  I was hesitant to tell the nurses because I know what would happen…they would do a viral swab and place all of us in isolation again.  So the resident came in, and the nurse practitioner, and they talked to Dr DeSantes, and they did a viral swab.  We probably won’t have the results until Monday so we are all stuck in our room again.  Now the nurses and doctors all have to gown up whenever they come in to see her or check on her IV pumps.  Her nose kept running all night, and she kept coughing.  Her temperatures and pulse stayed normal all day.  Though her blood pressures have still been a little on the high side.  They will be checking her cyclosporine levels again tomorrow so we will see what it comes in at.

She had a coughing fit tonight and threw up a bit of mucous all over herself but she recovered nicely.  We had to change her pajamas and then one of the TPN tubes came disconnected…so there was a big commotion trying to get CJ cleaned up, the floor wiped, and the lines replaced all while she was supposed to start sleeping.  But she was a trooper and she settled down easily and her breathing and nasal drippies all seem better already.  Hopefully this will pass quickly and it will be nothing to worry about, and we can start talking about losing medications and further discuss the H word sometime over the weekend.  Today was another darn good day.

On a sadder note, Amy and I had a very rough time emotionally last night after I posted.  While Charlotte slept, Amy had been browsing the obituaries as she regularly does for her job and noticed a familiar name.  One of the patients we knew from here, in fact our neighbor in Charlotte’s first round, died a very short time ago from her cancer.  We had become close to her and her family in our 4 rounds here and she really loved Charlotte and was so sweet to her.  We had been home so long before Charlotte’s transplant that we didn’t know that things had gone poorly for her.  We feel horrible that we never knew it happened, and that we missed her funeral and a chance to talk with her parents again-though we wouldn’t have known what to say.  It reaffirmed the seriousness of the situations Charlotte and all of these kids are in.  It makes everything really really scary again.  We have been so blessed that Charlotte has been doing so well so it is easy to forget just how fragile life is.  I think Amy and I both cried ourselves to sleep.  She was the first patient we knew that has lost her battle to cancer, and we pray she is the last.  She was a beautiful young woman, taken home much too soon.  May she find rest and peace in the hands of the Lord.  And may her family be comforted in His grace.

Posted March 29, 2011 by L. Elske in Uncategorized

3 responses to “March 29th, 2011. Day +18

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  1. I’m so glad to hear Charlotte had a good day overall. I’m SO sorry to hear about the loss of Charlotte’s little friend. I’ll keep praying.

  2. Well it sounds like another good day for you all…happy Dr.’s, Gma E. visit, Mommy/Molly time, reducing meds, counts going up, starting to talk about going home…definitely a day to put in the “good” category. We read Maddie’s obituary and she seemed like an amazing young girl, so full of life even until the end. We are so sorry you lost a friend. Lyle said Maddie was really fond of Charlotte. Charlotte has another angel to look after her now. We’re so proud of you all as you continue to be brave through this scary and uncertain time. Our prayers continue for Charlotte’s body to heal and begin to use the healthy host cells. Prayers are being answered!

  3. Really loved the video of Charlotte sharing her hero beads! We’ll also remember Maddie’s family in our prayers.

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