Archive for April 2011

April 30th, 2011. Day +50   4 comments

Day +50.  Halfway there!  Please continue your prayers for another uneventful 50 days and a cancer free future!

We would like to invite everyone to a fundraiser at the Waupun Pizza Ranch Monday night from 4:30-9:30pm.  Another fantastic event put on by the Beaver Dam TLC Club.

http://teensleveragingchange.shutterfly.com/tenderlovingcarebenefit

Posted April 30, 2011 by L. Elske in Uncategorized

April 29th, 2011. Day +49   2 comments

burgers...sweet.

We have been home for three weeks today.  Things have been so awesome that I hate the idea that I am going back to work on Monday!  Charlotte is just great!  She has been keeping up on her eating and drinking and has been more active between all of her snacking.  In the last three days,  Amy and I

Garage Saling!

both have seen that little twinkle come back in her eye-she has been very happy and playful and even joking around at times.  Potty training still has its ups and downs.  Yesterday we had no luck on the potty chair and today she was very happy to go twice for us.  There is still work to be done there but she continues to cooperate and we will continue to treat her like a normal almost three year old!

We had the home health nurse come today and change her PICC dressing and take another sample of blood to test her magnesium and phosphate levels since they have been changed to oral instead of IV.  CJ took a short nap and then we headed to Sun Prairie to briefly hit some garage sales.  We only made it to a few but Charlotte did a little bit of walking herself and picked out a pair of purple shoes for Molly.

The clinic called back this afternoon to let us know that her phosphate level was just fine but her magnesium was a little low so she will have to take that tablet three times a day instead of two.  On Tuesday the NP expected we may need to make that change because she prescribed enough pills for three a day but said we should try two first…so that doesn’t worry us at all.  We may not find out until Tuesday,  but we think Charlotte might be getting the PICC line removed.  Tuesday she will have a little longer clinic visit.  She will have to have her monthly IV of Pentamidine and IVIG so she will be be hooked up to tubies for a few hours and hopefully the doctors will have a chance to see her while she is just there hanging out so she can get back to having fun full time.

Posted April 29, 2011 by L. Elske in Uncategorized

April 26th, 2011. Day +46   9 comments

Charlotte has been doing pretty well at home.  Potty training has been both trying and rewarding the last two days.  For the most part, she is still not happy to change her ways and sit on the potty chair, but she has been successful a few times and gets very happy.  So we will continue working on it and hopefully she will be as excited as we are with her results.

She had a clinic appointment today and Dr DeSantes was unable to see Charlotte because of his schedule.  Instead we met with the transplant NP.  Her WBC is at 8.2, her hemoglobin is 11.8 and her platelets are 188k.  Everything looks as it should, the Nurse Practitioner says.  Charlotte’s rash is almost unnoticeable at times and today it was good enough for them to want to reduce her steroid dose again.  Because she is drinking so much during the day, it was also decided that we can discontinue her nightly IV fluids!  She will need to take a couple of tablets twice a day to keep her magnesium and phosphate levels up.  The home health agency will take her blood again on Friday and those levels will be rechecked after a few days of her receiving them orally.

Her engraftment study results also came in and Charlotte is fully engrafted!  The blood that was taken two weeks ago shows more than 98% of the blood cells grew from the donor’s marrow and less than 2% from Charlotte’s own.  These results are about as good as they can measure and we are thrilled!  Depending on her blood tests on Friday, there may be discussion of removing her PICC line at next weeks appointment.  She will still have weekly clinic visits and blood draws until at least Day +100.  But if it is only once a week, we are certain Charlotte will get used to having her port accessed again.  It will be better than having the PICC line there to possibly get infected.  Her urine test from Thursday also show that her UTI is now gone.  It was a wonderful day.

Posted April 26, 2011 by L. Elske in Uncategorized

April 24th, 2011. Day +44   5 comments

Still no complaints from us.  Charlotte is doing just great!  We have been hanging out at home a lot, but today Amy and I got out for a nice long walk with the girls in the stroller.  Molly fell asleep most of the walk, but Charlotte stayed awake and aware of everything that was going on.  I think she missed walking.  I think we all did.  Not that we were ever very active or healthy from walking before CJ got sick.  But with the amount of time Charlotte wanted to walk in the short hospital halls, I vowed to spend more time walking outside when we got home.  And now all we need is some cooperative weather to do so.  She can’t be outside while it is too windy without a mask so we like to just wait until it is more calm before we head out.  She has spent enough time behind a mask to make her wear one just to go outside.

For months, Charlotte has been so good with telling us when she has to go potty, or when she is done going potty.  And she is getting good at holding her potty so she is only going only every 4-6 hours.  By the time she does go, with the amount of fluids she has in her, she almost always leaks through her diaper and pants.  We had wanted to potty train her last fall.  But with the amount of fluids she received every day in the hospital it would not be fair to try to train her and have her go dozens of times a day while we were there.  Now that we are home, we wanted to try again.  But she still hates the idea of sitting on the potty chair and just cries when we have tried to put her on it.  Today I think Amy got a little fed up with Charlotte and her leaky diapers.  She warned CJ that we would try to sit on the potty after she woke up from her nap and she was only on there for a couple of minutes before she went potty!  Tonight Amy sat her on there again and she went pretty much right away again!  We will continue tomorrow and hope she gets the hang of it and doesn’t mind it too much!

Posted April 24, 2011 by L. Elske in Uncategorized

April 22nd, 2011. Day +42   4 comments

Things are still going good here.  Charlotte has been quite hungry and thirsty.  Her new level of IV fluids is allowing her to drink a little more during the day.  So far she has had over 30 ounces of milk yesterday and today!  We have heard nothing from the clinic about her cyclosporine levels taken Tuesday so we are assuming they are good enough.  The urine sample was collected and brought to the Sun Prairie clinic yesterday.  We hope any tests will come out negative, but will probably not hear anything until Monday.  The home health nurses stopped by today to change her PICC line dressing and they also drew some blood to check her phosphorous and magnesium levels.  Those have been pretty low for the last several weeks (a common side effect of the chemo and cyclosporine), so they have been adding those to her IV fluids.  We heard back about those tonight and they continue to be low so they will still have some added to her IV fluids for the next week.

Catching bubbles in her potty chair!

Charlotte has had quite a few good poopy diapers since the beginning of the week.  Now her tummy looks to be a little smaller and tonight she actually stood up, walked around, and played with Amy and me for about an hour or so.  She wanted to blow some bubbles and then had the idea for Amy and me to blow them and she would take her little insert from her potty chair and try to catch the bubbles in it!  It was a pretty good change from the last few days when she has been relying on the comfort of the couch rather than doing any playing or walking…so Amy and I are feeling better about her backup problems.  We hope she can remain a little more regular from now on and that might make her feel better and a bit more active.

She is still being totally awesome with taking her oral medications, and her GVHD rash looks quite good to us.  So good that we are only applying the hydrocortisone cream twice a day instead of three times.

This weekend is going to be tough.  My big sister and her family are in town from Nebraska for the Easter weekend and we really won’t be allowed to celebrate with them properly.  Charlotte is still in isolation so that means she can only be around a couple of people at a time.   So while Grandma E will be having a get together, we will be staying here at our place.  It kind of stinks, but it is a very small price to pay for a short period until she can get more fully healed.  CJ will have many more Easters to celebrate with the family after this gets done with!  But it should be a little nicer weather so I hope to get her outside doing some walking around the neighborhood soon.

Posted April 22, 2011 by L. Elske in Uncategorized

April 20th, 2011. Day +40   12 comments

  Charlotte is still doing pretty good at home.  Tonight we start a smaller dose of IV fluids to run overnight so hopefully we will have one less wet diaper to change during the night.  Tomorrow morning we need to put a collection bag on her and get a urine sample.  This is probably her least favorite thing to do in the world.  But tomorrow am is the last dose of the UTI antibiotic so we need to make sure she no longer has the infection.  I hope it goes well tomorrow morning with collecting the sample, then I need to run it to Sun Prairie to the lab.  Then I hope everything turns out clean and happy!

Otherwise CJ is still a little less energetic around the house than we are used to.  We keep thinking that we have come home from a normal round of chemo and that she should be much more active.  But this last one was hardly a normal round of chemo…so we need to realize that this was probably much harder on her than the first four rounds so she will need more time to recover.  She likes to lay on the couch and watch her Netflix TV shows (just like I would do if given the chance)….We have seen all 53 episodes of Go Diego Go probably three times, all 73 episodes of Dora the Explorer three times, all 40 episodes of Wonder Pets likely 4 times.  Every one of the 26 available episodes of Oswald has been watched three or more times.  And I’m sorry Nickelodeon, I know you have done some great things in my time, like Pinwheel and You Can’t Do That On Television in the old days, and SpongeBob AwesomePants and The Ren and Stimpy Show a little later on.  But I gotta say that a guy (me) really gets tired of Fred Savage laughing like a little idiot…he was 25 when he voiced this show. For those of you that don’t know Oswald,  Fred is the voice of this “lovable” (slow) blue octopus that has a daschund named Weenie and friends like a walking talking flower named [surprisingly] Daisy, and a penguin friend, Henry, who is always more grumpy than even me.  But Fred attempts to sound like he is 9 and clueless and it is just creepy.  Ok, enough with Oswald.  Seriously, enough with Oswald.  Once a day or so, Charlotte will surprise us by requesting one of her old standards…Britain’s favorite-Wallace and Gromit (A++), Britain’s favorite Wallace and Gromit spinoff-Shaun the Sheep (A++  For my money, it really doesn’t get any better than Shaun the Sheep.  If you haven’t yet seen Shaun the Sheep, find it and watch it.  Thanks to Tom and Mary for the disc back in September!), Britain’s favorite Shaun the Sheep spinoff-Timmy Time (A++  Not yet available on Netflix.  Boo Netflix. Boo.), or Britain’s most stupid and lamest dog, and spinoff of nothing-Kipper (D-, but he may be better than Oswald).  Trust me-Kipper is not funny.  Not cute.  Not clever.  Not important…maybe Oswald aint so bad.  Curious George and the dope with the yellow hat might just be her favorite.  We only have two different dvds of George and I think we have watched each of them a billion times.  So Charlotte tries to keep it interesting during the days!

So the TV and the Netflix streaming has kept CJ busy and very well entertained.  She is still eating as much as she wants, which is quite a bit.  And she is drinking better than we had ever hoped.  She does look like she is packing on the pounds (see picture).  One might blame it on steroids, lack of exercise, improper diet, the Elske genes, or just the plain old Vitamin D milk she is hogging down.  You can blame it on whatever you want.  I blame Amy for giving me this beautiful little girl (and another that happened to turn 5 months old today!) and creating a family that I just couldn’t live without.  Right now I am finding it next to impossible to tell Charlotte “No” to anything.  As long as the doctors don’t care, Charlotte can have Grandma W’s spaghetti noodles for breakfast.  And again for elevensies, and lunch and then Chinese restaurant’s chicken for 2nd lunch and dinner.  And more noodles for bedtime snack.  And she can request one cereal and eat half of that.  Then watch me eat my different cereal and want a bowl of mine.  I don’t care.  I even got out of bed at 6am the other morning to get chocolate doughnuts from Pick-n-Save before the other customers could breathe on them, and came home and went back to sleep.  Like I said, it is just hard to tell her “No” right now.  I plan on having those conversations with her over the next 20 years…

Posted April 20, 2011 by L. Elske in Uncategorized

April 19th, 2011. Day +39   2 comments

Charlotte is still having a good time at home.  She is sleeping well and seems to be feeling okay.  Her rash looks unchanged as far as we can tell.  She has had a few BMs over the last few days so we hope she is going to start feeling better as soon as she starts going on a little more regular basis.

Today Charlotte had her second clinic appointment.  She didn’t need to have her port accessed so it was a little easier on her today.  She had blood drawn and then we waited to see the doctors.  The fellow and Dr DeSantes both saw her and said she is looking good.  Dr DeSantes said “Her numbers are great, she looks real good.  See you next week.”  I like to hear updates like that.

Her WBC was up to 8.1 today!  Her hemoglobin dropped a little bit to 11.3, but her platelets were up to 158k.  They are still impressed with her eating and drinking so tomorrow night we start on even less IV fluids.  She will be at just less than half of what she came home on.  They even said that if her drinking still improves, they might drop fluids altogether next week.  That would be nice.  But it was just good to see the doctors pleased with her progress again.  After what Charlotte has been through over the last 7 months, it warms our hearts when we can leave an exam room with smiles on our faces and secretly high-fiving each other.

Posted April 19, 2011 by L. Elske in Uncategorized