Archive for July 2011

July 26th, 2011. Day +137   5 comments

It’s been another terrific week in the Elske house.  Charlotte and Molly have been great.  Charlotte’s energy is continuing to come back.  We notice her getting up in her bed and going up and down the front steps with more ease.  She helps us pick up the fallen walnuts in the backyard.  She is so cute wearing her little Dora gardening gloves!  She has been really enjoying her time with Grandma E while Amy and I are at work.  And Sunday Grandma W was able to come over and spend a little time with the girls too!  They loved that.

We had no clinic day today so her CBC numbers will have to wait for another week.  We celebrated the nicer weather tonight by getting out CJ’s bouncy house and she had a swell time!

 

Posted July 26, 2011 by L. Elske in Uncategorized

July 19th, 2011. Day +130   9 comments

So far, so good.  It’s hard to believe that another week has gone by and I am again late in posting.

If you talk to Amy or me,  you will find neither of us complaining about how things are going (other than the darned heat around this joint)…Charlotte has been wonderful.  She is starting to eat a little better and once in a while she will surprise us by drinking more than usual.  Her nighttime routine is getting a little better.  She is staying asleep for more hours during the nights and she doesn’t always need us to lay in bed with her when she wakes up in the dark.  Her energy level is still very high, but with the hot weather and sun, she hasn’t been too free to play outside for more than a few minutes at a time.  She is enjoying chasing Broadway around the house, though I think that he would prefer otherwise.  As I sit here watching her play in the tub, I think back to how miserable she was when she was in the hospital and after we returned home, when it was bath time.  She is now back to her normal self-playing in the tub until the water gets cold, and the bubbles all disappear.  It usually takes a few minutes of constant reminding to get her in the mood to get out.  Words cannot describe how happy and proud I feel every day watching her grow up.  She is talking better and better.  She enjoys holding conversations, helping out around the house, and using the big girl potty chair on the toilet.  She is very loving to Molly and Broadway.  She is having lots of fun when Grandma E watches her while Amy and I are working.

We had to go to AFCH today for her monthly dose of Pentamidine so the NP stopped in to examine her.  She said CJ was looking really good.  Even though Charlotte was not too thrilled to be looked at as she was missing her nap because we were there.  But she settled down as Sharon left and waved goodbye to her.  Dr DeSantes was in a little later.  He was all smiles as he said “She looks great!”.  It was the most enthusiasm we have ever seen from him so we will take that as a good sign.  We will have another clinic appointment in another two weeks and we hope the good news continues.

Her WBC was at 4.2 today, her hemoglobin was 10.5,  ANC was 2200 and she had 311K platelets.  From what I can tell, her numbers are reflective of how she must be feeling.

Many thanks to Flashes of Hope for providing us with these terrific pictures, taken on May 24th.

Posted July 19, 2011 by L. Elske in Uncategorized

July 12th, 2011. Day +123   8 comments

My apologies.  It’s been another 7 days since my last post.  Fortunately for us, it has been another uneventful week.  Charlotte seems to be doing great at home!  Amy went back to work last Wed, and is now working Mondays and Wednesdays of each week.  She hasn’t been in the office since before Molly was born!  So this is certainly a sign that things are starting to return to normal.

CJ had no clinic day today.  It’s such good news that Dr DeSantes doesn’t need to see her every week.  We go in next week to Day Treatment for another months worth of Pentamidine, then hopefully not for another two weeks again!  Her hair is now about 1/4″ long and she is looking cute!

Today is Broadway’s 8th birthday!  We got him some little presents and sang “Happy Birthday” to him.  We are glad he is back.  Charlotte sure has missed him and we have too.

Late last week, I received an email from a gentleman whose team participated in the Trek 100 bike ride to benefit the MACC fund.  In June, his team rode in Charlotte’s honor and raised $755-without ever having met any of  us!   Hearing from people like  Joe still makes me cry almost every day.  His emails mean so much to me that it is hard not to tear up every time I read it.  But these are thankful cries.  Thank you to Joe and his team members for their dedication to make a difference!

All of us know that we aren’t done with this journey yet.  But at this point, it would be a waste of good normal family time to worry too much about things turning out for the worse.  It it hard to forget what Charlotte (or each of us) has been through the last 10 months, but we need to keep thinking positively.  Of course, that is much easier said than done.  Having a cancer diagnosis is a forever life changing event.  Sometimes it gets a little easier to change your mind’s direction, but it can always wander back to places we would rather not be.  And the really horrible part is that every few days there is a new family in AFCH spending their first sleepless nights wondering what the future holds for their child.  Amy’s friend’s brother is there right now going through what we did in September with his little boy.  Spend a little time thinking about it, and it gets easier to see why people like Joe do what they do.

Posted July 12, 2011 by L. Elske in Uncategorized

July 5th, 2011. Day +116   5 comments

Sorry for the late post.  Time really flies when you are having fun!  Things have been going pretty darn good at home.  Charlotte has been enjoying the weather and playing outside when she gets the chance.  She is still at very high risk for sunburn so we have a little bit of a struggle every time we try to lather her up with sunscreen but we get through it.  More acting like a normal three year old I’m afraid, but we will take it.

Amy and her girls at the parade.

We had a wonderful holiday weekend.  We were able to take Charlotte to the parade in Columbus yesterday afternoon because George and Rita J. were so gracious to give us a spot in their yard away from the crowds.  Thank you!  We also watched the fireworks from an empty parking lot and both of the girls had a fun time with that.

Grandma and Grandpa E watching fireworks

Today was clinic day, and Dr DeSantes seemed pleased with how CJ looked.  She has been off the blood pressure medicine for a week, with no abnormal numbers (we still took her pressure three times a day) so Dr DeSantes said we can quit the blood pressure readings altogether!  That will be a good change for all of us.  We also lowered her dose of cyclosporine this week.  We will have this new dose for another four weeks, then hopefully lower it again.  We lowered her magnesium supplement today as well, but her mag levels continue to be low so we will have to watch those.

We are also on track to have clinic days every two weeks.  Her hemoglobin level was still down around 10.3, but the rest of her counts were quite normal.  We hope the doctors are not too concerned and she stays on the right track to recovery.

 

Posted July 5, 2011 by L. Elske in Uncategorized