Archive for January 2011

January 31st, 2011   8 comments

Things are still pretty normal at home. We have no new news to report other than Charlotte is going crazy being couped up inside the house. She has lots of energy and loves to show it off. It makes us smile every time we think about how far she has come. We are still worried about her upcoming tests and the transplant but her high activity level reminds us of how great she is feeling and her smiles fill us with hope for the future.

Posted January 31, 2011 by L. Elske in Uncategorized

January 29th, 2011   10 comments

Things are still going well at home.  About as well as we could expect!  Charlotte has been feeling great and acting very normal and extremely energetic.  You wouldn’t know there was anything wrong except for her cute little bald head and medications sitting on our counter:)  We wish we could just get her outside and run a little bit!!!  We’re going to try and do a family walk today as the weather seems a bit warmer today.

We finally have news for Charlotte’s return visits to the hospital.  She will be going in Wed Feb 9th for her bone marrow aspirate and biopsy, lumbar puncture, and PICC line placement.  Then we return the next day for a CT scan and her monthly Pentamidine medicine.  Both days she needs to fast before the procedures and she will be sedated.  Amy and I are both starting to get scared because we now know that this is all still going forward and that they aren’t just going to call us anymore and say “Stay home, she is just fine.”  Nobody ever told us that call could come, but it still would have been swell to receive it anyway.  So we are now getting into a BMT mindset and trying not to think about the billions of possible bad things that could happen.

Amy has requested I tell her a daily mantra…..to keep her staying positive when she starts feeling weak.  Here it is……

She’s done great….she’s doing great….the odds are in her favor.

This will be her cure!!!!!

Thank you all again for your prayers for Charlotte.  With how well she has done, we know your prayers are working.  Now more than ever, we need more prayers.  This transplant will be the biggest battle Charlotte has yet to face.  She is a fighter, but so is transplant and AML.  We need the prayers and positive thoughts to continue for her to not only thrive during transplant, but to have this be her cure.  Let her be one of God’s AML miracles 🙂

 

Posted January 29, 2011 by L. Elske in Uncategorized

January 26th, 2011   2 comments

Things are still going great at home this week.  Charlotte has been healthy and happy all week.  She has slept pretty good at night and is taking a good nap most days.  Today Grandpa W visited and he brought Broadway with him!!!  Mommy was very happy to see him and Charlotte was too.  We miss our little man and hope CJ will get well enough for him to come back to us for good.  In the meantime I think Grandpa is pretty happy watching over him.  Molly has been pretty good all week too.  She still likes to nap in our arms during the day so she probably isn’t sleeping as great as she could but it is good enough for now.

We are still waiting on any further news from the hospital.  I suppose until then we will just hang out and try to have fun.

Posted January 26, 2011 by L. Elske in Uncategorized

January 24th, 2011   7 comments

Woo hoo!!!  Charlotte continues to amaze us with how well she bounces back from her chemo rounds.  Today was lab day and her numbers were great…no transfusions were needed.  Her white cells and platelets are within normal limits, her hemoglobin is very close to normal (this was the one we were most worried about today) and she is no longer neutropenic.  We still have to be very careful to keep her away from illness, but this is all great news!

Charlotte was such a big girl today.  Amy informed Charlotte of the day’s agenda to “get blood taken” today.  Charlotte clarified that this meant a poke.  Within 30 minutes, she told Amy “Ready, Mommy.”  When Amy clarified what she meant, she stated “Go get poke.”  And she was agreeable to Amy putting on her “magic cream” and told Amy where to put it on her port.  She continues to make us so proud in how well she is accepting her new life.

Charlotte fell asleep on the way home from the clinic (for less than 10 minutes), but this was enough to cause her to fight her normal nap.  So we had a tired little girl tonight who went to bed the fastest we’ve seen in weeks 🙂

Now we wait for a phone call from the hospital letting us know the next step as we have no other appointments scheduled as of right now.  It’s so hard being patient 🙂

Posted January 24, 2011 by L. Elske in Uncategorized

January 23rd, 2011   5 comments

Things are still going great at home!  Charlotte is feeling very good and she is eating as well as we could hope.  She loves playing with all of her toys that we couldn’t take to the hospital.  Every old toy she finds is just like a new one to her.  She has been sleeping pretty good-although she really doesn’t want to quit playing at night and settle down for bed, but we have a month to work on that.  We have most of our hospital bags unpacked and that will have to do for now.

Charlotte has to go back to AFCH tomorrow for a blood draw to make sure things are looking good.  This time we will probably have to wait for the results to come back before they can remove her port needle just in case she may need a transfusion.  So we may not be out of there as quickly as we are used to.  So far we don’t know a whole lot more about the upcoming transplant required tests, but maybe this week.  I guess that means that we can just chill out and not worry about things for a little while (when we figure out how to do that, we will let you all know).

Thanks to everyone for their continued prayers and support.  We couldn’t make this journey without you behind us keeping us from falling down!

 

Posted January 23, 2011 by L. Elske in Uncategorized

January 21st, 2011-Home Again!   7 comments

Charlotte woke up happy again today and quickly got into one of her moods where she didn’t want anyone to bother her.  She didn’t like the resident checking her or listening to her.  She didn’t like the nurse assistant taking her vitals.  For the last three rounds this has meant she feels well enough to not want to be there anymore.  We knew her numbers must be still climbing.

She had 130 neutrophils and was also making some platelets.  And her monocyte count was now at 500.  So they told us in rounds that we should expect to go home today.  Charlotte was happy and we loaded up the van after I got back from work and were back in Columbus at 6:30!

It feels good to be home and we are hoping it is a nice relaxing weekend.  Charlotte has to go in Monday for a blood draw to make sure she is on the right track and won’t need a transfusion because her platelets or hemoglobin are too low but we don’t think they are too worried about that yet.

There may not be an update Saturday night as we will probably be pretty busy unpacking all of our stuff and just trying to enjoy a normal life for a little while again!

Thanks to everyone for keeping Charlotte in your prayers!

Posted January 21, 2011 by L. Elske in Uncategorized

January 20th, 2011   3 comments

Today was another busy and energetic day for our Charlotte.  She slept until 8:30am which also allowed Amy, Molly, and even Grandma E to get a few extra winks too.  She was in a great mood right from the start allowing the nurse, resident, and nursing assistant to assess her all at the same time.  Her appetite, vitals, and numbers continue to look great.  Her neutrophils rose to 88 today.  We are told that if they increase again tomorrow we might go home!!!  We are again trying not to get excited as it would be perfectly normal for the numbers to drop tomorrow, but at least we know discharge will be soon.

Posted January 20, 2011 by L. Elske in Uncategorized