Archive for August 2011

August 30th, 2011. Day +172   4 comments

CJ playing again with some of her favorite toys

We had a terrific day at the clinic today!  Charlotte was extremely cooperative with the nurse and Sharon (the NP), and even gave her a hug goodbye.  Dr DeSantes also stopped in and saw her quickly.  He was silent, but was smiling.  We are still on schedule for only two more weeks of Cyclosporine,then we should be done!  We will also have the CD4 test in two weeks to determine where her immune system is at and whether she will be off isolation or not.  She will need an eye test done in two weeks to watch for sicca (dry eye), a side effect of the BMT.  There will also be another engraftment study done which measures the percentage of her blood vs the donor’s.

Her appointment was at the end of the day today so we weren’t planning on getting any CBC results back.  We brought Molly along and stopped back up on 4th floor to visit the “old family” for a little while.  Charlotte saw one of her favorite nurses, Katy, and they played in the play room for a little while and got reacquainted.  We saw other nurses and Drs as well.  They all commented on how great she looked-and she was in her mask the whole time.  I think they would be more impressed to see her smiling so much.  Everyone couldn’t believe how big Molly was getting and most were surprised to know that she was 9 months already.  It was nice to visit, but it felt better to leave again!

As we left, we stopped back in at the clinic to see if her numbers happened to be back from the lab.  We were in luck!  Her WBC is 3.7 (normal is 4.0-12.0), hemoglobin is 11.4 (11.5-14.5), platelets are 284k (160k-370k), and she had 1930 neutrophils (1400-6600).  Her magnesium level was at 2.1 (1.7-2.3) today which is plenty awesome so we can also discontinue the twice-a-day mag tablets which destroyed the taste of Charlotte’s milk.  She loved her nightly glass tonight!  Between how well CJ and Molly behaved and the numbers today, it was a really swell day.

Posted August 30, 2011 by L. Elske in Uncategorized

August 28th, 2011. Day +170.   5 comments

It has been an emotional couple of weeks.  The day I left for Canada, we learned that Amy’s Uncle Russ was involved in an accident while on his pony driven cart.  He did not survive.  Amy’s Aunt Mary (his sister) broke her neck and the other passengers had more minor injuries.

The week prior to that, I went to the funeral of a friend and former co-worker who died after a less-than-month long battle with pancreatic cancer.

Amy’s cousin, Alison, is still in a fight with her cancer.  The first several rounds of chemo left her tumors smaller, but they are still too numerous for surgery.  She is currently in the hospital and gave us quite a scare, but is continuing to impress her doctors.  We continue to be amazed at her strength and we pray for the best for her.

Alexis (Charlotte’s transplant neighbor)  is back in the hospital with more GVHD.  We continue to pray for her and her family every day.

One of the teenagers we knew from AFCH, Keanah, just lost her battle with AML late last week.  I spent a lot of time talking to her mother in the hospital this spring.  Keanah was a brave young woman and she fought hard.  I wish it didn’t end this way for so many kids.

The two year old nephew of Amy’s friend was diagnosed with terminal cancer in mid-July.  They are currently demonstrating amazing strength as well as they keep him happy and comfortable.

Amy and I often keep tabs on other children across the nation with similar diseases.  Ross, a three year old from Kansas City, was diagnosed with Charlotte’s same rare subtype (AML-M7) the day after Christmas 2010.  He is now having major BMT related complications and will need a miracle to pull through.

Amy and I can’t help but feel extremely guilty for how blessed our life has been, despite what Charlotte has been through.  Many of these individuals didn’t have much of a normal life since their diagnosis.  Our girls have been terrific, even without me last week.  Molly has her 9 month appointment on Monday and CJ will be back in clinic late on Tuesday (we may not have CBC numbers until Wed).

Sorry for the bummer post.  But our life is as normal as we let it get, and we feel too close to all of these scenarios to not keep them in our prayers.  We also know that our life can change drastically with just one fever or rash.  So we went to the park today and had a picnic.  Good times indeed.

Posted August 28, 2011 by L. Elske in Uncategorized

August 16th, 2011. Day +158   8 comments

It has been just another fantastic week at home.  Charlotte and Molly have been great.  Charlotte is still acting like a completely normal three year old.  She loves playing outside, acting silly, singing, and she both is happy with and jealous of her little sister.  She has been very active and she is taking good naps and sleeping better at night.  Molly got her first tooth on Friday so she was a little grumpy because she was in pain, but she is happier already.

Charlotte had her clinic appointment in day treatment today.  We were thinking it was her last one, but found out today that she might need at least one more dose of pentamidine next month.  I was also hoping Dr DeSantes might decrease her cyclosporine today for maybe the final two weeks since she is already on such a tiny dose, but the Nurse Practitioner said that the protocol calls for CJ to be on it for another 6 weeks.  They won’t even test her immune system until she is no longer on the immuno-suppressant-so she would be on isolation for at least that much longer.  We told the NP that Dr DeSantes thought we might be off isolation by then so we planned the date for Molly’s baptism at the end of September hoping Charlotte would at least be tested by that time-and we compromised and ended up with 4 more weeks on the cyclosporine for now.  Her CBC numbers were all a little lower this week, but the doctors didn’t seem too phased.  Her WBC was 3.3, hemoglobin was 10.7, platelets 255k and she had 1820 neutrophils.  We are still sticking to bi-weekly appointments for the next month or so.

Amy and I would just like to say “Thank You” for all of the nice comments and the continued prayers.  It means a great deal to us that so many people are still following Charlotte’s story.

If there is no blog next week please don’t be alarmed.  I will be heading to Canada for the week for a fishing trip and Amy may or may not be able to figure out the website (her words not mine).

 

 

Posted August 16, 2011 by L. Elske in Uncategorized

August 9th, 2011. Day +151   7 comments

Looks like these posts are getting more rare and even more scarce in their content.  Remember when you could sit down over a cup of coffee and read all the goings on?  Better hurry up and sip..cause there is nothing new to report here.  It has been another awesome week!  We had no clinic visit today.  CJ goes back again next week for her [hopefully] last day treatment (Pentamidine) appointment.

Charlotte has been enjoying her time outside since the weather has gotten so much better.  She still has to wear a mask when it is windy, but she has no problems with that-she is pretty much used to it.  We are so proud of her and how far she has come.

We received notice last week that her Make-A-Wish wish has been approved.  Sometime after the doctor says she is healthy enough to go (we are guessing this spring), we will be heading to Disney World to take in all of the sights.  She is going to have a terrific time and we can’t wait to start planning it with her!

Now you can get back to work and enjoy your still warm coffee!!  Thanks for checking in on us!

Posted August 9, 2011 by L. Elske in Uncategorized

August 3rd, 2011. Day +145   5 comments

Sorry for the tardy posts as of late.  Life is still pretty good here in Columbus.  Charlotte has been about as normal of a three year old as we could expect.  She likes to play.  She likes to run around the house and yard.  She likes to pick on her puppy.

Molly is a happy little girl who likes to eat and doesn’t like to take long naps.  Once in a while she will sleep for a couple of hours.  But sometimes, when we think she is very tired and sleepy, she will stay down for less than an hour…I think she spends a lot of her days like her dad does…rather be eating or sleeping.

We had a clinic day yesterday afternoon.  CJ was not very cooperative with the NP when she wanted to examine her so she put up quite a stink.  I really think she must be feeling better because she is starting to think that even every two weeks is too often.  But we were still able to stick with the tapering of the cyclosporine, we are now down to just twice a day!  Hopefully we might be able to get that down again in another two weeks.  We didn’t get any of her numbers back until today because the appointment was late in the afternoon.
Her WBC was 5.0, platelets are at 347k, neutrophils were 2740 and her hemoglobin was 11.2!  So all of her numbers are looking great!

Posted August 3, 2011 by L. Elske in Uncategorized