Archive for September 2011

September 27th, 2011. Day +200   3 comments

Well, there is just not much new to report here.  It’s been another great week at home.  We are trying not to get too excited about it, but things are about as normal as we could hope!  Charlotte will alternate between playing very nicely with Molly and wanting little to do with her.  CJ is now three and she loves her personal space and private playing time.  She will often put herself in her bed just to have a little timeout if she starts getting tired or crabby.  Sunday we were able to all get to church on time and have Molly baptized.  Charlotte was a little talkative and active throughout the service, but we couldn’t be happier with how well she did there for the first time in over a year.

Amy and I gave blood last Friday in Sun Prairie and met a couple of other parents familiar with our situation.  It felt great to give just a little back to the Red Cross and share Charlotte’s story with others.  And another devoted person in Columbus is organizing a blood drive in honor of Charlotte and the three other kids in the Columbus/Fall River area that have had a recent run in with cancer as well.  Mark October 27th on your calendar.  It will be held at the Cardinal Ale House/Bowling Alley in Columbus.  I will post more details when I have them.

Thanks for checking in on us.

Posted September 27, 2011 by L. Elske in Uncategorized

September 22nd, 2011. Day +195   3 comments

Well looky here.  It’s been another week since my last post.  Things have been great at home.  Sunday night we took Charlotte shopping to Kohls.  It was the first time she has been out in public without her mask in quite a while!  She loved it.  Afterward, we went to Benvenutos for a terrific meal.  She loved that too!  She has been free to eat strawberries and blueberries again!!!  She went through 3 half pints of blueberries in three days!

We are busy preparing for Molly’s baptism this coming Sunday.  We wanted to get it done right away but church would not have been a very good place for Charlotte to be during the last year so we put it off until we had some sort of idea of when she might be off isolation.  We are still concerned about going this weekend, but we look forward to being there with so many caring people.

Please say some prayers for Mitch.  He is an 18 year old AML patient who was in the hospital with us this spring.  We saw an awful lot of him and his family.  He finished his chemo rounds in July and less than two months later, after spending only two weeks at college, he relapsed and is back at AFCH.  He will go through more harsh chemo and likely has a BMT in his future as well.  We pray for him every day.

Posted September 22, 2011 by L. Elske in Uncategorized

September 16th, 2011. Day +189   9 comments

Just a quick update this morning.  Sharon called us and gave us her numbers from yesterday.  As we already knew, her CBC results were fine, and her CD4 results were back.  Her isolation test numbers needed to be over 200, and Charlotte’s were 312-so she is officially off isolation!

We told CJ the good news-that she wouldn’t have to wear a mask anymore-she could care less.  But when we told her she could have strawberries and blueberries again, boy did she get excited!  So we will plan a grocery store run this morning to get a few of her favorites.

This is all good news.  But it is still very early with her new immune system so we still need to keep her protected from people that are sick or could be contagious.  This means if anyone in your household is sick, you are likely contagious, and please keep your distance.  Our doctors say that a person is contagious 24 hours before symptoms show.  Her risk of a major infection is still very high and a simple low grade fever will send her back to the ER for a poke.  Our plan is to start bringing her back into public shortly, but we need to do this slowly.  So if we happen to decline an invitation, please don’t take it personally.

Have a great weekend!

 

Posted September 16, 2011 by L. Elske in Uncategorized

September 15th, 2011. Day +188   3 comments

Charlotte was in Day Treatment today for a dose of pentamidine.  She finished her oral cyclosporine (immuno-suppressant) earlier in the week so this will be her last dose of tubie medicine she should be receiving.  She is also now down to just one medicine a day at home which she will be on for at least another 6 months.

She had a complete meltdown today when the NA went to take CJ’s blood pressure shortly after we arrived.  She knew the poke was coming and she wanted no part of any of it so she let us know she was less than thrilled to be there.  We ended up skipping her weight and height measurement and went right to the poke.  Once her port was accessed, she calmed down pretty quickly.  Dr DeSantes was out of town so we saw Sharon (the NP) again today.  She was happy to see how well Charlotte was doing at her 6 month checkup and she made several comments about how much of a milestone this is.  She explained the blood tests CJ would get today and let us know that she was pleased with her progress.  Her CBC results came back like we hoped they would.  Her WBC is 3.7, hemoglobin 11.7, platelets 260k and she had 1860 neutrophils.  We didn’t get the results of the immunoglobulin (isolation) test back today, but we hope to tomorrow.  Her engraftment study test (how much blood in her body is Charlotte’s vs how much is being made by the donor’s marrow) won’t be back for a couple of weeks so they will let us know when they hear more.

We asked Sharon what was next.  She looked at the chart and told us that usually the next visit would be in three months!!!  We told her that we had been coming every two weeks up until now so we settled on one month.  Amy and I would feel a lot better if we got to see her numbers again in a month.  The port in her chest needs to be accessed and heparin flushed at least once every 30 days.  So once CJ starts needing blood draws more then 30 days apart, we will need to discuss surgery options to have it removed.  I am not sure we are ready for that quite yet either…

We left AFCH to head down the street a block for her eye appointment.  We were expecting a two hour visit and it ended up being over three.  Charlotte was incredibly happy and cooperative  for the eye doctors, and she didn’t even have a nap!  Her eyesight is good and the doctors noticed no symptoms of dry eye that could have been GVHD related or anything else to worry about.  They recommend seeing her again in a year unless Dr DeSantes thinks it needs to be sooner.

It was one helluva good day.  She made us so proud today.  She makes us proud every day.

Posted September 15, 2011 by L. Elske in Uncategorized

September 11th, 2011. Day +184   12 comments

Sept 11, 2010. 11:58pm.

Sept 11, 2011. 5:51pm.

I am not trying to dispute how significant this date is to the rest of the country-it just means something a little different for us.  Most of you know that today is exactly one year since Charlotte’s AML diagnosis (and exactly 6 months since her bone marrow transplant).  It has been the longest year of our lives and most likely the best one any parent could ask for.  Amy and I spent a lot of sleepless nights in those first few weeks wondering and fearing what life might be like in a year.  We now know, it’s pretty damn good.  Amy and I will be the first ones to to tell you that CJ is far from “out of the woods” and we still worry too much and too often.  All I know is that my life has never been as fulfilled as it has been over the last 365 days.  It is something I wish no father would experience, but I am so very thankful for the bond that I now share with her because of what we have been through.

Those of you familiar with the current secular holidays are also aware that today is National Grandparents Day.  It should go without saying that Amy and I stood on the capable shoulders of our parents more than a few times this year.  I don’t know where we would be without the Grandmas so often helping Amy out at the hospital.  Or the Grandparents watching Molly and Broadway for days that turned into weeks, then months.  How blessed we are that we’ve been able to share our horrible low moments with those who possess the power to comfort us.  Together we have elated at Charlotte’s triumphs, no matter how big or small-I don’t need to remind anyone who was there that first weekend at AFCH how we all cried when Charlotte saw “The Girls” and actually cheered up for a few moments and clapped along with the songs.  Mom[s] and Dad[s], you mean the world to us, and we would be nowhere without you.  Happy Grandparents Day to you.  No one is more deserving.

Amy and I spent a few hours yesterday at a benefit in Fall River for a young boy recently diagnosed with ALL.  It felt so great to be able to give back to families that need our support.  We plan on attending as many of these as we can because we know how much of a difference it can make.

Charlotte’s Tuesday appointment was moved to Thursday, so we won’t have any more information for you until later this week.  But thanks again to everyone for checking in on us, and for all of your prayers and positive thoughts.

Posted September 11, 2011 by L. Elske in Uncategorized

September 6th, 2011. Day +179   2 comments

There was no clinic day again today so it will be a non eventful post, much like our last week.  We had a nice quiet holiday weekend at home.  CJ’s appointment was moved next week from Tuesday the 13th to Thursday the 15th so she can also be seen by the eye doctor that day to check for sicca.  So we will be waiting a couple more days for CBC numbers and the isolation test results.

September is National Childhood Cancer Awareness Month.  36 children are diagnosed with cancer every day.  1 in 5 of those will not survive.  Please consider coming to the Badger Childhood Cancer Networks 2nd annual Childhood Cancer Awareness Blood Drive, hosted by Prairie Creek Church in Sun Prairie.

Friday, September 23rd, 2011  1 pm to 6 pm

Prairie Creek Church,  6484 North Bird Street,  Sun Prairie, WI

Schedule an appointment today to donate!

1)  Call 608-825-2876  or  2)  visit www.redcrossblood.org and enter sponsor code 4465

You can also register at the Blood Drive with Be The Match to be a potential bone marrow donor!

Charlotte needed blood 7 different times during her chemo rounds and BMT.  And she needed platelets on 18 different occasions during that time.  Where would she be today without the volunteers that donated?

On a sadder note, Ross (from Kansas City) died on Thursday the 1st.  Andrew (Amy’s friend’s nephew from Janesville) passed on Sunday the 4th.  We continue to pray for their families during this unimaginable time.

Posted September 6, 2011 by L. Elske in Uncategorized