Archive for May 2011

May 31st, 2011. Day +81. Charlotte turns three!   15 comments

Sorry for the late post.  We have had an awesome weekend.  The four of us spent almost two hours at Toys R Us on Sunday picking out toys for the hospital and Charlotte had a great time!  We even let her pick out three for herself (which ended up being more like 7 but who’s counting?).  She never once complained about wearing her mask or us washing her hands half a dozen times while we were there.  She was adorable picking out toys and making the tough decision of which cart to put it into…..hers or the one for the hospital.  She was tired by the end of the trip but it was well worth it.

Yesterday we had a little Purple Party for Charlotte with the Grandmas and Grandpas and she had lots of fun.  As she put it, “everything was purple” from her plates, to balloons, to all of our shirts.  She even had a purple doughnut cake with purple frosting.  She was also able to get outside and play before it got too hot and windy.  She was excited to try out her new bouncy house and acted like a completely normal three year old!  She was so tired by cake time that she burst into tears when we sang Happy Birthday and refused to blow out her candles.  After a much deserved nap, she was ready to try again and blew out all three candles on the first blow!  We definitely missed having all of Charlotte’s aunts, uncles, and cousins present too, but we just couldn’t have that many little ones in direct contact with CJ.  (Thanks family for being so understanding).  I don’t know that we could have asked for a better day. 

We arrived at AFCH about an hour early today to deliver all of the toys and visit with the 4th floor nurses and staff.  Charlotte had a good time handing out Happy Birthday candy bars to all the familiar faces and Molly was excited to show everyone her smile.   The P4 staff sang Happy Birthday to Charlotte right there in the middle of the hallway (no tears this time) and the day treatment staff presented her with a cake and gifts.  Amy’s original goal was to provide AFCH with one wagon full of toys.  As you can see in the picture, we provided them with 1 wagon and 1 double-decker cart!  (Thanks to everyone who gave a gift to help us reach our goal).  Everyone kept exclaiming how good Charlotte looked.  We just couldn’t get enough of that!  Then at clinic, her CBC numbers showed a white cell count of 6.0, hemoglobin of 12.3 and 247k platelets.  Because both our transplant NP and Dr DeSantes were out today we were seen by the NP from 4th floor, the same one that followed her closely during her many months of treatment.  She hasn’t seen Charlotte since our discharge day and she thought CJ looked great!  Dr Diamond also stopped by and was very pleased with how she looks and how her numbers have been progressing.  She is also thrilled with how well Charlotte is continuing her normal development in language (talking our ears off most days), in potty training, and in accepting her new role as a big sister.  Her steroids will continue to be tapered today, leaving us with just 7 more days!  Her cyclosporine levels were also high again today, so that dose got reduced.  Hopefully she will be off these immunosuppressants soon and can really start building her new immune system.

Eight and a half months ago, Amy and I didn’t know if we would see Charlotte celebrate her third birthday.  We are just so proud of her and everything she has endured.  She proved to us again just how accepting she has been of all of this.  While we were visiting P4, she began to get antsy.  Eventually she looked at Amy and said, “I want to go to Charlotte’s room.”  Although we thought we were prepping her for just a visit, here she thought we were being admitted.  So very sweet and so sad at the same time.

While we still have a long way to go before we can even think about calling her cured of this evil, tonight Amy and I are on top of the world.  There were definitely tears today, but they were happy ones.

 

 

Posted May 31, 2011 by L. Elske in Uncategorized

May 28th, 2011. Day +78   12 comments

Not too much new to report here.  Charlotte is still doing pretty well, though her appetite and thirst have really decreased over the last week.  We think that is common because of the tapering of the steroids.  We essentially cut her dose in half this last week and that is a pretty big change.

We are spending the weekend preparing for Charlotte’s 3rd birthday on Tuesday!  We are going to have a little B-Day party with the Grandparents on Monday so she can have some fun and cake, etc.  Tuesday happens to be one of her clinic days where she will need the monthly dose of pentamidine and IVIG so we will be there a few hours.  We hope Toys-R-Us is slow tomorrow because we would like to take CJ shopping to pick out lots of toys to donate to the hospital for the several children there right now going through bone marrow transplant.  We know how wonderful it was to have a full wagon of toys waiting for Charlotte when she was admitted so we would love the chance to lighten the load of other parents going through this time.  We are also planning a return visit to the 4th floor to see the awesome nurses and doctors again!  We hope they haven’t forgotten little Charlotte and they would probably like to see Molly all grown up now.

Posted May 28, 2011 by L. Elske in Uncategorized

May 24th, 2011. Day +74   8 comments

Today was a good day.  Charlotte and Molly were both very happy and playful.  We took Molly with us to the clinic appointment today as we were given the opportunity to take part in Flashes of Hope, a non-profit agency that takes professional pictures of sick children for no cost.  We had some taken back on September 21st, just 10 days after her diagnosis (see the picture), and they are just precious.  They usually only take one set of pictures of each child unless there is a change in the family, and since we now have Molly, we were told we could go again.  Charlotte is usually not too fond of being the center of attention with pictures and all, but Amy asked her yesterday if she would be willing to smile without her nuk, and she was excited to do it.  So after her clinic appointment, we went and had some great times getting our pics taken.  Charlotte was very cute and happy!!

The nurse practitioner said that Charlotte looks great and that the rash on her hands is not GVHD, so they are continuing with the steroid taper.  Looks like we may only have two more weeks!  We had the np examine CJ first again and the nurse took her blood later in the appointment, but we begged her to get us the CBC numbers today because we hated waiting for them last week.  She arrived with the printout after we had a super cool time with the photographer.  Her WBC is up to 7.1 from 5.6, hemoblogin 12.7, up from 12.4 and her platelets were a beautiful 211k, up from 135k last week.  As many of you remember, CJ’s very low platelet count was what started us down this path in September, so we love seeing counts that are considered normal.  She hasn’t had this many platelets since before her transplant.  We will still need more numbers tomorrow to see how her cyclosporine and mag and phos levels are.  But we are happy with the numbers we saw!

Thanks for your prayers.  Today wasn’t a good day, it was an awesome day.

Posted May 24, 2011 by L. Elske in Uncategorized

May 22nd, 2011. Day +72.   3 comments

Things are still going swimmingly here at home.  If not for her bald head and her daily medications, it might be hard to tell that there was ever anything wrong with Charlotte.  But that’s both a blessing and a curse.  We would love to think that we have a completely normal three year old and life will go on without worry.  But it is also too easy to remember what she has been through and that there are still months and years of unknown concerns that could trouble us.  So we try to stay thankful that she is doing great, and hope it continues on for oh, I don’t know…the next 8 decades or so.

Tuesday is our next clinic day.  As per usual, Amy and I are both getting nervous to see what her blood tests show.  We hope the numbers keep Dr DeSantes (and us) happy and we can continue on with the tapering of the steroids this week.  We might be down to only two more weeks to go!

Posted May 22, 2011 by L. Elske in Uncategorized

May 18th, 2011. Day +68   2 comments

Not much new to report here.  I forgot that I said I would update with her numbers when we got them.  We got them, 12 hours ago, so here they are.

WBC 5.6, Hemoglobin 12.4, Platelets 135k.  They aren’t as pretty as Amy and I would have liked to see, but the doctors didn’t want us to come back in to retake them so that can’t be all bad.

We know that many of these numbers can fluctuate quite a bit in just a day so we are trying not to worry too much.

Posted May 18, 2011 by L. Elske in Uncategorized

May 17th, 2011. Day +67   4 comments

I am sorry for the delay between posts.  There are only so many times I can say “Charlotte is doing great!”.  Nevermind.  I should be saying that every day!!!

Charlotte is doing great!  She has been pretty active and happy.  She has been eating and drinking good too.  She has been playing with her toys and is having fun coloring a lot.

Today was clinic day.  Amy and I usually dread these days.  We are afraid of what the blood tests will show and what the doctors will think of how she looks.  But today, Dr DeSantes thought she looked great!  He thinks we should stick to our plan of reducing the steroids next week, then again the week after that, and then one more week…so we are down to about three weeks of steroids yet.  And after the steroids are done, we can start to decrease the cyclosporine doses too.  We actually had to reduce her cyclosporine levels from 0.25ml to 0.2 ml last Friday because her levels were a little high, so we are already on the right track with that.  Amy asked him if he would be worried about the GVHD coming back after the steroids and cyclosporine levels are being dropped, and he thought the odds were generally 50/50.  But he thinks that Charlotte will be just fine.  He is now more worried about infections, which is quite common after a BMT.  Her immune system is still very immature right now, and the steroids and cyclosporine she is given to prevent/control her GVHD are actually immuno-suppressants.  So these medicines are keeping her more susceptible to colds, viruses, etc…so we need to be extra careful to keep her (and us) protected.  Unfortunately, because of how the appointment was setup today, we saw Dr DeSantes first-then the nurse came and drew her blood to send it to the labs.  We were released shortly after that and never found out her CBC results tonight.  We will have to call in tomorrow to get the numbers so I will update more then.

We also got to see Dr Diamond for a few minutes this afternoon.  This is the first time we have seen her since we were discharged.  She was pleased with how CJ has been responding.  She remembered that Charlotte’s birthday was at the end of this month and it looked like there were a couple of times where she had tears in her eyes when we talked about where CJ was in her treatment 8 months ago.  We love that about her.  She isn’t afraid to feel bad or happy for her patients.

Since September, Amy and  I have been following about a dozen blogs of children all over the states with this crappy disease.  And tonight we found out another young man (11) with AML has relapsed for the second time-only three months out of his second bone marrow transplant, and will undoubtedly lose his battle.  His doctors have said there is nothing else medically that can be done, and they gave him approximately 90 days.  We know that these moments happen to families every day, but it is never easy to read when it happens to someone we know.  Actually, we don’t really know any of these families, but we know all too well what they have gone through.  We know the fears that they faced when their child was diagnosed.  We know the pain they felt when their child cried from the disease, or the more harsh treatment.  But Amy and I are scared to imagine what they are feeling now and pray that God is walking them through this ominous journey.

Posted May 17, 2011 by L. Elske in Uncategorized

May 14th, 2011. Day +64   3 comments

Everyone is still terrific.  Charlotte has been getting better and better every day.  She is playing a little more each day.  The potty training is still going pretty well and she seems very happy.  She is also being a super awesome big sister to Molly.  She watches and entertains her while Amy is busy or on the phone.  They both have been sleeping good at night too.  We were going to try to go to the citywide garage sale in Jackson this morning but the windy and cold rainy weather will leave us in Columbus for the weekend.  So hopefully we will have a nice relaxing, uneventful time at home!

Posted May 14, 2011 by L. Elske in Uncategorized