Archive for December 2010

December 31st, 2010   6 comments

After a dicey start to the day yesterday, Charlotte and Mommy were able to come home after her nap last night.

In the hospital, they draw blood every morning to watch Charlotte’s blood cell levels drop and rise.  This happens when we are still sleeping between 5 and 7 each morning.  This way it can go off to the labs and the doctors can have the results by 8 or 9 am.  So early yesterday morning, the tech came in and disconnected Charlotte’s last IV dose of chemo while it was running (as they should), drew her blood and reconnected the IV tubes and restarted the flow.  An hour later Charlotte and Mommy woke up in a pool of toxic liquid in the bed.  Apparently the tech did not reconnect the IV tube properly and it just leaked all over Charlotte and the bed for another hour.  I am told it was a pretty hectic scene with the nurses trying to get the bed and sheets cleaned off, while Mommy tried to get Charlotte in a bath while she was still trying to get some morning rest…

Now we weren’t sure how to proceed.  Obviously, Charlotte did not get the complete requested dose of chemo and we didn’t know if, how, or when they would restart it.  Charlotte still had a dose of chemo to be given by an injection yet and that was supposed to be three hours after the last IV chemo was done.  Technically that wasn’t done yet so we didn’t know if Charlotte would still be allowed to go home today.

The doctors discussed the chemo leaking incident and apparently, compared to the entire 4 day chemo treatment, the amount of the drug that was leaked was not a concern and they would allow it to just be missed altogether.  The injection was scheduled for about 11:30am and it went on time.  They gave her some oral medication to take the edge off and make her forget about getting sticked so she wouldn’t be so apprehensive when it needed to happen again.  Amy described her mood as very cute and playful for about an hour then very energetic and obnoxious for another half hour until she fell fast asleep for her nap.  When she awoke Mommy and her headed home!

Amy and Charlotte were both excited to see me (ok, they were happy to see Molly) and the rest of the night, and the day today, was pretty uneventful.  We are going to have a nice quiet New Year’s Eve at home tonight, spend a little time with G&G E and Uncle Lyle and Jenny and family tomorrow, then probably start packing for the lengthy hospital admission on Tuesday :(.

Have a safe and healthy New Year everyone!

Posted December 31, 2010 by L. Elske in Uncategorized

December 29th, 2010-4th round of chemo part 1   4 comments

Amy and Charlotte (with just one suitcase in tow) arrived at the hospital yesterday morning for labs to confirm Charlotte’s numbers were ready for chemo.  Fortunately (and sadly) Charlotte is getting more comfortable with her port being accessed.  Amy and the RN were able to handle this task themselves (it used to take up to 5 people) and although there were still tears, Charlotte stopped crying before the needle was taped into place.  Afterward she clarified with Amy that there would not be any “big pokes.”  She has often asked about “big” pokes vs getting a “little” poke and Amy and I have not known how to answer as we haven’t been sure what she means by these different pokes.  Amy took this opportunity to ask Charlotte what kind of poke she just received and Charlotte said it was a “little” poke.  Amy happily informed Charlotte that she definitely was not getting any big pokes today.  Charlotte was happy, but it keeps us wondering what a big poke is in her mind.  After hanging out at the clinic for about 45 more minutes, Charlotte was cleared to be admitted.

Charlotte again was very happy to see everyone and anxious to get playing.  With this being Charlotte’s 4th time back, everyone knows her.  It’s no longer just her direct nurses that welcome us or interact with her.  As Charlotte walks down the halls, she is greeted with big smiles from the nurses, unit secretaries, nursing assistants, doctors/residents, cleaning staff, volunteers, and other families.  This place has really become a second home to us.

Chemo began at about 5:30pm.  This “milder” round includes the high dose Ara-C every 12 hours (for a total of 4 doses).  After the 4th dose, Charlotte will receive a second chemo drug via a shot 3 hours after the Ara-C is completed.  She then needs to be monitored for one hour for any reactions and then she is free to go home with an EpiPen.  So hopefully Charlotte will be discharged by Thursday afternoon.  She also is getting eye drops every 4 hours again and we’ll have to continue those for one day at home.

So far Charlotte is doing very well.  She slept well last night although she seemed a bit restless at times.  The chemo is already affecting her appetite as she is not very hungry today, but she has been doing a great job drinking milk this round.  Her activity level has also been high, but she needs occasional breaks of being carried in the halls or sitting on a lap. But these rests are short and she is active again.  I was able to visit with Charlotte and Amy today during lunch and Charlotte had me walking the halls too.

Amy spoke with Dr. Desantes about the status of the transplant.  He clarified that actually both the first and second donors declined to give bone marrow, so we are actually awaiting the typing results from donor 3 and 4 (who we definitely know are perfect matches and are willing to donate bone marrow).  We again are thrilled that Charlotte has been blessed with so many potential donors, and hope this is God’s way of matching Charlotte with the very best donor.  He estimates the transplant to actually take place the second or third week in February, but we are hoping he is just being extra cautious about the timeline and we can maybe start the process sooner.  There is still some discussion to be had about whether or not Charlotte will be able to keep her port for the transplant (with the addition of a PICC line in her arm) or if she will have surgery to remove the port and have a Hickman inserted instead.  Amy and I still aren’t sure what we want for Charlotte, but additional surgery never is a choice a parent wants.  They just want to make sure she has enough “lines” or access points to administer all of the chemo/meds/antibiotics and possible nutrition she will need during transplant and her one port cannot do it all.  When we return on January 4th (for the second half of round 4) we will begin the more detailed talks about the transplant, so we’ll know the answer to this question then.

Dr. Diamond also visited Amy today.  Her presence again gave Amy comfort.  Amy informed Dr. Diamond that we both are now feeling a lot more comfortable about the thought of transplant….it’s just the final outcome that still worries us – that we obviously want the transplant to work and for Charlotte to be cancer free.  Dr. Diamond responded (with her smile), “That’s the hope of all of us and the odds are in her favor.”  Amy and I have often felt the 60% prognosis was not high enough for our liking, but to hear it put in terms of “the odds being in her favor” seemed a much nicer and more optimistic way to look at it.  And Dr. Diamond again stated that she was never going to ask us to put Charlotte through something like transplant if she didn’t feel it beneficial or something that she would not do with her own child.  So once again….thank you Dr. Diamond for giving us hope and the strength we need to continue.

Posted December 29, 2010 by L. Elske in Uncategorized

December 27th, 2010-holy cow it’s been five days since I last posted…   6 comments

So I want to apologize to everyone for the post count reduction over the last couple of weeks.  As is probably the story with your families, things get pretty hectic around the holidays.  And because Charlotte is still nice and healthy, we have been kept busy as well with normal holiday type plans.  We spent the last few days doing last minute Christmas shopping and wrapping and celebrating.  We wanted to get to church Friday night but decided against it because of the close quarters the Eve service usually provides.  But we did spend a little time that evening driving around Columbus looking at the Christmas lights.  Charlotte loved it!

Christmas was a swell day.  Charlotte had a great time opening her gifts from Santa.  And she had a good time opening Molly’s gifts.  And Mommy’s and Daddy’s.  She as a standard two year old though, she wanted to play with some of Molly’s toys more than her own.

Charlotte has been sleeping well at night.  She is getting between 10-12 hours of sleep a night so that is great.  Molly is a little different story.  She still gets up a few times during the night wanting to feed only to not want to fall back asleep.  So we still need her to get a little better…but she could be worse.

Charlotte is going to be readmitted tomorrow for a couple more days of chemo.  But hopefully she will be back home by Thursday or Friday, then we go back on Jan 4th for another couple of weeks as she will get more chemo and then they expect her numbers to drop low enough to keep her there.

We still don’t have any new information on the bone marrow transplant.  But we do expect that there will be more discussions about that to be had over the next three weeks while we are at the hospital.

We hope you all had a wonderful and restful Christmas weekend.  Now have a safe and healthy New Year!

 

Posted December 27, 2010 by L. Elske in Uncategorized

December 22nd, 2010   9 comments

So far, things are still pretty normal at home.  Molly is still fussy at the end of the day, and that fussiness/crying usually lasts until well after midnight so sleep seems to be  a precious commodity around here recently.  But she is usually good during the day and rests well enough between feedings.

Charlotte has been great.  Again, if you saw her, you wouldn’t know she was sick.  She is energetic, loves to explore and play and run around and chase and be chased.  She loves her Disney movies and acts about as normal as we could expect out of someone her age.

We are still finishing our Christmas shopping when we can find the time.  Charlotte, donning her mask, and Molly, Amy and I actually went to Kohls tonight to do a little browsing/buying.  Charlotte had a great time there too.  She loved to just walk around (big surprise)!  But who knows when we will find enough time to wrap anything!!  We are all excited to have a long weekend at home before going back to the hospital for us to relax and just hang out.

We are expecting it to be quiet for a  few more days, so if we don’t have the time to write another post, or if you all may not have the time to check, Amy and I would just like to wish everyone a safe, healthy and happy Christmas and ditto for the New Year.  We have been very fortunate to have such caring family and friends and we hope for nothing but the best for everyone that has been wishing and praying for us.

Posted December 22, 2010 by L. Elske in Uncategorized

December 20th, 2010   2 comments

Molly has been better over the last couple of days.  We changed her formula and she seems to be responding well to the change.  She is not nearly as fussy.  Still waking up a few times during the night, but that is completely expected.  Overall, she is pretty happy.

Charlotte has been great.  She is still eating good, and playing happily.  We did receive news of a setback today.  It turns out that the bone marrow donor they had arranged for was only interested in donating stem cells, not bone marrow.  The doctors want to transplant bone marrow, so this donor will not work.  They do still have two other “perfect” matches that are willing to be marrow donors, but because of the compatibility confirmation steps involved, the transplant team will not be ready for Charlotte in early-mid January as originally planned.  So the only other option, to keep the leukemia at bay, is to have Charlotte come in for another round of chemo before a transplant can be arranged.  The doctors have agreed to do a modified round of chemo, which should be a little easier on Charlotte’s body.  Since they still ultimately want to do a transplant, they aren’t going to be using the very intensive chemo she has received the first three rounds.  She will be admitted Tuesday the 28th for about three days, then home for about a week, then readmitted for another two weeks for another short round of chemo and watching her numbers return to normal.  The transplant team thinks that we are now looking at a transplant the last week of January or later.

It is a small setback, but we are still very thankful there are more donors available for Charlotte.

Posted December 20, 2010 by L. Elske in Uncategorized

December 18th, 2010   3 comments

It has been another couple of good days here at the house.  Charlotte continues to do well.  Her CBC results from Friday were promising.  She already has over 700 neutrophils and is making white blood cells and platelets.  So everything looks like it should there.  We still don’t know anything more about the next round of treatment.  Hopefully next week.  Charlotte is still eating and playing well.  She has lots of fun running around the house.  She gives Molly kisses goodnight and is really cute towards her.

Molly is still not sleeping the best.  She has had us up late the last several nights because she can’t fall into a deep enough sleep for us to lay her down.  Then of course she wakes up every few hours wanting to feed.  She has been crying a lot and we aren’t sure if she likes the formula we have her on.  So we will keep watching this little one, while we hope our other one keeps getting better.

 

Posted December 19, 2010 by L. Elske in Uncategorized

December 16th, 2010   5 comments

It has been a pretty good couple of days here at home.  Amy has stayed busy watching the kids while trying to put the rest of our stuff away and keep the house clean.  Today was her birthday so it was very special for her to spend it at home with Charlotte and Molly!  So far (knock on wood), Charlotte has stayed healthy and very active.  She has also lost her fussiness since arriving at home.  She has been a good eater and a very loving big sister.  She has slept through to the morning both nights and wakes up late and happy.

Tomorrow we have her blood draw at the clinic and we will see how her numbers look.  We have a lot of people wanting to visit for the holidays, and right now we just can’t risk too many new people because of her neutropenia.  Hopefully we will know more about the next round and dates sometime soon as well.

Yesterday, Amy noticed that Charlotte’s Mickey was missing and she didn’t remember packing him up at all.  And after we thought about it, neither of us remember seeing him recently.  So Amy called the 4th floor and asked if they happened to find him in our room and they didn’t.  They then put her in touch with the lost and found department, thinking he may have been wrapped up in the bedding one day and sent off to the cleaners.  They said this happens all the time and would contact the laundry contractors and let us know.  This morning Amy received the call that they found him!!  They even offered to send him to our house, but since we will be there tomorrow for a blood draw, we will try to pick it up then!

We continue to be blessed with cards, letters, gifts and donations from many different people.  Some of you we have known for most of our lives, and some we do not know at all.  We feel so lucky that this many people are touched by Charlotte’s story, and every day we hear of another person who checks the blog every day just to see how we are doing.  People we do not know, and may never meet, are still sending us money and gifts.  Maybe it is just the holiday season.  Maybe, through this story, others are reminded of just how precious life is and feel more thankful for their own health and families.  We would just like to say “Thank You” to all who have taken the time to write us, post a comment, or send an email or a check.  Your support is very much appreciated.

Posted December 16, 2010 by L. Elske in Uncategorized