Archive for October 2010

October 31st, 2010 Happy Halloween!   7 comments

Charlotte treated us to a nice relaxing morning by sleeping until 8:30am…and she woke up only because the nurse had to enter her room to take blood.  Charlotte’s morning labs revealed that her numbers are continuing to drop, so much so that she needed a blood transfusion today and the nurse had to take blood to type and screen Charlotte.  She received her blood during her nap and we jokingly referred to her as our little vampire with it being Halloween today.

Grandma W was already on our hospital floor when we called her to say we were awake so she was able to visit us right away.  Charlotte was thrilled to see her again and immediately helped herself to Grandma’s muffin for breakfast.  Afterwards she begged for chips to eat and we feel embarrassed to admit that we allowed her to do so.  We’re just so thrilled that she has an appetite right now.

After some in-room playtime, we were able to coax Charlotte out of the room and go trick-or-treating.  This really was the first year that Charlotte participated in this holiday tradition.  The hospital technically had trick-or-treating on Friday, but it occurred during Charlotte’s nap so she wasn’t able to participate.  But she was still given a bag of goodies from the event.  Mommy had hid that bag in preparation for today and gave the items back to the hospital staff this morning so that Charlotte could have her own trick-or-treat experience.  She was not willing to wear her princess costume that she was given during her clinic appt, but she was agreeable to wearing her pumpkin shirt with the new green fairy wings she was just given last night by the hospital chaplain.  We called her a pumpkin fairy and we thought she looked extra cute.  For never really dressing up before, or officially trick-or-treating before, Charlotte figured out the idea of it immediately.  We honestly don’t know who had more fun-Charlotte or the hospital staff who were so excited to have her have a great time.  Charlotte has really seemed to touch the hearts of so many staff here that there were big smiles on many faces.

We said good-bye to Grandma W at naptime and Charlotte was sad to see her go.  She was agreeable to napping, but unfortunately was woken up early by the nursing staff when her blood transfusion was over.  They had to disconnect her and take vitals immediately after the transfusion was complete.  Poor Charlotte woke up to unfamiliar nursing staff looking at her (and who were also cutely dressed as Care Bears).  Needless to say she was a little scared and needed a cuddle from Daddy before she settled down again.  Fortunately, she got back into her great mood just in time for her volunteer buddy to arrive.  Charlotte was such a big girl and actually played with her volunteer for a good 30 minutes alone in the playroom.  It made us hopeful that this will be a good match after all.

We’re keeping our fingers crossed tonight that Charlotte continues to feel good through the night.  They have to check her temperature every four hours through the night watching for any possible temperature because of the transfusion.  She was a little warm right before bed.  Although she seems fine now, you just never know when a fever might strike and she’ll have to go on antibiotics.  She’s so enjoying being tubie free right now that we hope this doesn’t happen.

 

 

Posted October 31, 2010 by L. Elske in Uncategorized

October 30th, 2010   5 comments

Today was another good day.  She woke up very happy and ready to eat and play.  Grandma W showed up early to play with Charlotte and do some walking.  Charlotte even kicked Mommy out of the play room when she was in there this morning with Grandma!  Grandma and Grandpa E showed up just a little bit later so Charlotte was in her glory with all of these fun relatives here to entertain her!  She wanted to walk the halls, and play, then get pushed around the halls in the stroller until she was ready for a nap!

She slept for almost three hours while Mommy and I went out to Kohls to do a little shopping for about an hour!  We returned and Grandma W was still taking good care of her (playing her Nintendo DS while Charlotte slept!).

playing hide and seek in Grandma's sweatshirt

Charlotte didn’t have any blood tests taken today so we aren’t sure what her numbers are…but if they are low at all, one would not know it!  She was full of energy and had a cute little attitude like any other two year old would have.  I think we will have some labs tomorrow to figure out if she is still on the right track in her treatment.

She was happy today.  She was energetic today.  We have said it before, and today we can say it again-she doesn’t appear to be sick at all.  We see a lot of sick and tired children here.  And we sometimes feel guilty that Charlotte is running through the halls hooting and hollering-having a great time while many other kids and their families are suffering.  Amy and I try to believe the doctors when they say that her attitude and activity level are great signs that she is doing well.  We all know that Charlotte still has a very long road ahead of her and Mommy and I don’t want to get too excited about her progress in case there are more rough times ahead and we end up like one of these other families.  But Charlotte is doing all she can to keep our minds off of her rotten disease.  She reminds us that while we may be the parents of a two year old with cancer, we are still the parents of a two year old.  And we like being those parents.

Posted October 30, 2010 by L. Elske in Uncategorized

October 29th, 2010   5 comments

She’s back!

Today was a fabulous day!  Charlotte woke up extremely happy, ready to eat, and ready to walk the halls by herself.  Although the stroller was used occasionally, a lot of walking was done by Charlotte herself.  She was smiley, giggly, and very funny all day long.  She got back into her 3 hour nap routine which also provided lots of energy in time to play with all of her visitors.  Grandpa and Grandpa E. visited this morning and Charlotte once again spent a lot of time playing board games with them (something she has not wanted to do for days now).  After an early bath (and a change of her port needle), Charlotte was able to visit with Grandma Wagenknecht, Uncle Lyle, and Aunt Jenny too.  She had so much fun with all of her visitors today-she even took a few pictures-she took this Uncle Lyle pic!  Thanks so much to everyone for their time today.

Charlotte’s numbers also took a huge drop today – which is just what we need them to do at this point to verify the chemo is working.  Her neutrophils dropped so much since Wednesday, that she actually had to wear a mask today.  This in combination with her great mood today, verified to the medical team that it was most likely the steroid that she was on (possibly not even the chemo) that had her in a tired, not feeling the greatest mood lately.  We asked at rounds today why she was placed on the steroid in the first place, but no one present could answer that question.  We’ll have to ask Dr. Diamond I guess.  But at least we know now that it is not a good medication for Charlotte and can avoid her from getting it in the future.

We are so thrilled to have our happy smiling little girl back!!!!

Posted October 29, 2010 by L. Elske in Uncategorized

October 28th, 2010   3 comments

We all had a pretty good night of sleep again, though Charlotte woke up a little moody today and it didn’t improve much throughout the day.

She was very upset when the Doctors came to look at her.  She didn’t want to talk to people, she didn’t want people to talk to her.  She didn’t want to play in her room or the play room.  She didn’t want to watch TV in any room.  She wanted Mommy to be quiet and push her around the halls in the stroller and that was about all she was in the mood for!  The nurses think it may be a side effect of the steroid she is on to counter the effects of the chemo drugs….that may also explain how she clocked in at 29lbs today and looks a bit chubby as of late-we think she may be retaining some fluids.  Fortunately, she has now been off of the steroid for 24 hours so we’re hoping her mood will begin to improve again.

Her “buddy” came again this afternoon and Charlotte was not too interested in spending any time with her either so she will be coming back later this weekend.  Uncle Lyle came to visit and she was accepting of walking and riding around the halls with him.  Mommy asked the nurse if it was ok if we took Charlotte to the cafeteria for dinner to try to get her “out and about” a little bit and we were told it was fine.  So all of us went to get a bite to eat.  Charlotte had a lot of fun walking around looking at all the food and picking out all the stuff she was willing to try…at least that is what we thought she was doing…she had about three bites to eat then wanted to walk around more.  This was a new area for her, and there was lots to see.  So Mommy, Uncle Lyle and I all took turns eating our dinner and walking with her around the dining area!  We returned to her room and continued to walk more throughout the night.   It could be a relaxing night as she will be off her tubies for the entire night and no vitals are scheduled to be taken either.  She might only have one visit at 3am to give her the anti-nausea medication and then she should be left alone for the rest of the night.

Posted October 28, 2010 by L. Elske in Uncategorized

October 27th, 2010-last night of chemo round 2   6 comments

Tonight at 4am will be Charlotte’s last dose of cytarabine.  That means she will be done with round 2 of her chemo drugs!  Now we play the numbers game of waiting for her blood counts to drop and then come back up again.  Speaking of numbers game, the numbers are playing a little game with us now.  Today her white blood cell and neotruphil counts are both up from two days ago.  I spoke with Dr Diamond today and she assures me that it is nothing to worry about.  Some of the medicine that Charlotte is on during her chemo to prevent rashes/fevers can actually make the counts go up a little bit.  She is not worried so we will try not to worry as well.

After a very restful night, Charlotte had a pretty good day with Daddy at the hospital today.  We slept until about 8am and had a good halloween-ish breakfast of boo-berry cereal.  She ate almost the whole bowl!  Shortly after that Grandma E showed up and we walked.  Then we walked some more and she rode in her stroller for a good long while.  Charlotte just doesn’t get interested in sitting down and playing.  She takes out her crayons and coloring book and has fun for about two minutes, then she is usually ready for something else.  She sometimes sits down and watches 15 minutes of TV, but she just wants to be outside of her room playing hall monitor.  She had a good lunch and settled down for a nap about 1:30.  She slept about two and a half hours and then Grandpa E showed up.  He was sporting a new ‘do as he raised money for Charlotte by having the guys at his Mason’s lodge shave his head for a donation.  It’s about time-he now looks just as handsome as his two boys have been for years!  Charlotte really didn’t notice the hairdo much and immediately wanted to walk the halls with Daddy and Grandpa.  So that went on for another hour and a half until Mommy came back from successful day at work.

Mommy and I gave her a bath tonight and she had a swell time in the tub.  She barely whimpered when we were wrapping up her port line and cried for just a few seconds when we were unwrapping her after the bath.  She really is getting used to life in the hospital and we couldn’t be happier with how she is being such a big girl every darn day.  The real test will be Friday as that will probably be the day we have to re-access her port.  But if her last two experiences will be any indicator, she recovered very well from both of those very quickly.  We aren’t too worried.  I think she will be fine.

Posted October 27, 2010 by L. Elske in Uncategorized

October 26th, 2010   5 comments

What another wonderful night of sleep!  Being without 2 of the chemo drugs last night allowed for the nurses to enter our room quite minimally allowing all of us some much needed uninterrupted sleep.  As a result, Charlotte woke early and was immediately ready to start the day.  She ate a great breakfast and insisted on being outside of her room all morning.  She was super anxious for Grandma Elske to visit and was excited to go play in the playroom with her.  Although she again wasn’t able to do all of the walking of the halls under her own power (rode in the stroller and wagon), she still tuckered herself out and demanded a nap at 11am before lunch even arrived.  She awoke about 1 ½ hours later still tired and feeling the need to cuddle on Mommy’s lap.  Mommy and Charlotte ended up sleeping together for another two hours in the chair!!!!  But this time she woke up very happy and again ready to walk the halls.

Charlotte continues to impress us on what she picks up each day.  Today she surprised Mommy by quickly pressing the call button for the nurse when her IV pump started beeping.  Mommy didn’t even know Charlotte had done this until all of a sudden someone was talking over the intercom.  Whenever she does this she just smiles the biggest smile of pride!

Tonight Charlotte got to spend some more time with her new volunteer buddy.  Although Daddy had to stay with her most of the time, Charlotte is warming up to her.  We’re confident that eventually she’ll look forward to these visits.  At about this same time, Mommy snuck away to the cafeteria to visit with some old NESCO coworkers.  Thanks girls for the visit…it did Mommy good to get away for awhile.  During this time Uncle Lyle stopped by to visit Charlotte.  This put Charlotte in great spirits for the night.  She had more energy than we’ve seen in a few days and her mood was so happy.  We actually let her stay up a little later tonight because she wanted to keep walking the halls and eating snacks.  And when we finally pushed bedtime, she was eager to agree.

Tomorrow is a Daddy and Charlotte day as Mommy is going to work.  Let’s see if Charlotte wears Daddy out the same way she has done Mommy the past couple of days.

Posted October 26, 2010 by L. Elske in Uncategorized

October 25th, 2010   11 comments

We had another night of pretty good rest.  Charlotte is now done with most of her round 2 chemo.  She has a few more days to go with the cytarabine.  We think that should be done by Thursday am.

This morning she had blood drawn again for her counts.  Her neutrophil count is now 2330 (it was 5060 on Saturday).   Her hemoglobin was down to 8.9 (from 10.2 on Sat), and her platlets dropped from 351k then to 246 today.  So it appears that the chemo is doing its job.  The doctors don’t have much to talk about so we hope that is good news.  Mommy and I figure she has another 2-4 days before she is neutropenic for the rest of our stay and will have to be confined to the smaller halls again and mask wearing while out of the room.

She wanted Mommy to do lots of stroller pushing today.  Charlotte wore her out!  Mommy was plain old tired by the time I came back from work and took over walking.    She only needed her IV for a little while then Charlotte and I spent another hour and a half in the halls tubie free!

Mommy came back from her prenatal visit (everything is still fine there) with one of Charlotte’s favorite things-chicken wings!  She had been asking for some the last couple of days…and she was very excited to see that she bought some!  She ate quite a bit of dinner and that gave her more energy for hall walking and riding.  She finally tuckered out and was ready for some nighttime snacks of marshmallows and milk.

She had another pretty good day today.  And we are thankful for that.

Posted October 25, 2010 by L. Elske in Uncategorized