September 15th, 2010   16 comments

Charlotte slept until about 8:30 this morning.  She woke up with a slight fever (100.5) and was not feeling very frisky at all.  She wanted nothing to eat or drink.  We found out overnight that the Drs were cutting out her scheduled morphine.  She can still have it as needed, but they don’t want to start getting a two year old hooked on narcotics right away.  We will have to see how the day progresses.

We met with the Doctors today to discuss Charlotte’s treatment plan in more detail.  They got most of the final results back from the cytogenetic tests.  They are certain she has M7-AML.  It is treatable with the current chemotherapy Charlotte is going through right now.  Dr Diamond again estimated that Charlotte’s time here will probably amount to about 7 months.  She still believes that Charlottes chances of remission after the first round of chemo is very good.  We also discussed the use of cord blood and stem cell treatments should our new baby prove to be a perfect match with Charlotte (this is about a 25% chance).  If we are able to use stem cells from the cord blood, this could cut Charlotte’s treatment time by about 50%.  Unfortunately, we won’t know if this is possible until he/she is born.  The use of a stem cell transplant could also improve the overall prognosis to 60%.

We have been given lots of information about this disease over the last few days…some of it good, some of it not so good.  Some specifics about Charlotte’s situation worry me, and some make me feel a little better.  Dr Diamond has said from day one that Charlotte’s internal organs seem to be in good shape, not swollen or oversized.  Some of the children have had their livers, spleens, and kidneys wrecked by the disease by the time they come in.  She has also said that many children that are diagnosed with AML are very sick when they arrive at the hospital or clinics.  Charlotte was relatively healthy (that is what makes this so much harder to understand and come to grips with) when she was diagnosed.  These two factors lead me to believe that she is still well enough to fight this disease off and stay leukemia free for the rest of her life.  It is my belief that much of the research and less happy statistics about this subtype are derived from the very sick children that Dr Diamond is talking about…this leads to the somewhat scary 40-50% relapse rate.  Charlotte will not be part of those statistics.  I have had a few straight days of bad news…but I believe that she is healthy enough to want to live to play with her puppy again.  She is healthy enough to want to live to help raise her baby brother or sister.  She is healthy enough to want to live to see her parents and grandparents grow older and retire.  And I believe she is healthy enough to want to live to start a family of her own someday.  I can’t give up on this hope.  Some of the prognosis numbers are not what parents going through this want to see.  Some of the 5 year survival rates are not as high as they are with other more common forms of cancer.  But we all need to hold on to something.  And I, for one,  am holding on to my Charlotte.

On a lighter note…Aunt Jenny came to visit today and she brought two huge balloons with her.  One Charlotte-sized Dora balloon and a huge Mickey Mouse head balloon.  Those really cheered her up.  Until the Mickey Mouse one burst.  Charlotte just says “Mickey Broke”.  But she walked around a little bit until it was lunch time…then she didn’t want to eat or drink much anyway.  Grandma and Grandpa Elske and Aunt Jenny had to leave this afternoon, but we can’t thank them enough for their continued support and love.  We are truly blessed to have a family that wants to come and be with us.  We have a family that is saddened to be away from this situation.  And we have family that has been here for us, in one way or another, since the very first words of bad news one week ago…I don’t know what we ever did to deserve such strength and emotional support from such great people, but we will take all of their love and support all the time!

She again napped well, from 1-4:15pm.  And woke up just prior to Uncle Lyle coming.  The four of us walked the halls again and hit the play room a few times.  He then worked his magic on Charlotte convincing her to eat her dinner.  Yes, I know, she is eating Doritos brand nacho cheese flavored tortilla chips.  But Dr Diamond said that right now, she wants her to eat.  And even food they wouldn’t normally recommend will be ok for her to partake in.  She had more to eat today than I remember in quite a while!  Thanks Uncle Chuck!

Charlotte eventually tired of walking around, avoiding eye contact with all the nurses trying to talk with her, and returned to her room for some quality tv time.  She watched a heaping helping of Dora and we got her to sleep at about 9:15pm.

Overall it was another good day.  And tonight, during her sleep, will mark 5 done days of chemo.  This means that two of the three chemo drugs will be no longer needed during this round.  Tomorrow morning she will be officially halfway through her first round of chemo.  We still are looking at 3 weeks in the hospital as her body continues to regrow [hopefully] cancer free cells and fight off infections, viruses, and maintain her health.  Then we could be looking at going home for a little while.  We will take it one day, hour or minute at a time.  I plan to return to work tomorrow to regain some normalcy, but plan on spending every night with Amy and Charlotte here at UW.  At least it should cut my commute time from 50 minutes to about 5!

Many thanks to everyone visiting the site and leaving their comments.  We will take all the prayers we can get.  Please know that we will probably never be able to thank you for all that you are doing, but our faith and our hopes are continuing to grow every day because of all of you.

Posted September 16, 2010 by L. Elske in Uncategorized

16 responses to “September 15th, 2010

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  1. I had a great time visiting with you all today. Charlotte throws the best playdates! We had fun coloring, playing with puzzles, playing hide the pennies (where Charlotte hid pennies in between the pages of a book and we had to find them), blowing bubbles and walking around the halls. Before going to bed tonight, Julia asked God to “please help Charlotte get better” and wondered if the medicine she was receiving was “chocolate milk”…so much for a tear-free day. Rest well tonight. You are all doing amazing!

  2. I shared Charlotte’s blog in our staff meeting on Wednesday. When Pastor closed our meeting in prayer, Charlotte & family were at the top of the list. We’re with you all in thoughts & prayers. Keep the faith!

  3. Continue to hold tight to the positive things. There are many people praying for you…even people you don’t know! Please give Charlotte a hug for me (even though she doesn’t know me well)! Big hugs to both of you, Amy and Lon.

  4. I look forward to your daily news on Charlotte and there seems to be a brighter rainbow with each message. If there is anything your guys need let us know we are there for you. Hello sweet one.

  5. Good Morning Sweet Pea…Just read the blog and am happy to see that things are looking better. All those prayers are working. Love seeing all the pictures.

    Love,
    Auntie Sharon- Dean and CoCo too!

    Auntie Sharon & Uncle Dean
  6. Thank you so much for creating this site so we can all keep updated on little Charlotte without bothering you. You are certainly in our thoughts and prayers each and every day. I am hopeful there will continue to be positive news as the days go by. Please take care of yourselves as well. And if you need a real bed to crash even for a night or two without having to drive, just call.

    Thinking about all of you,

    Aunt Donna Jordan

    Great Auntie Donna
  7. You are in our thoughts and prayers. I can see that Charlotte has a great support group. We pray that you can keep up your strength for her. We pray that the medication she is taking will be just what she need.
    It is great that you can write about Charlotte’s day.
    We will continue to check in with you and know that we will help in any way we can.
    Love
    Ivan & Reta

    retathies@gmail.com
  8. So glad to hear Charlotte had a fun day with her aunt and uncle! You are all in our thoughts and prayers.

  9. Hi Amy, Lon and beautiful Charlotte,

    We just wanted to send our thoughts and prayers to all of you. We are so sorry to hear about the difficult time you are all going through, and we are hoping everything turns out for the best. Please, if there is anything we can do, let us know.

    Thinking of you all,

    Terri and Andrew Balistreri

    Terri and Andrew Balistreri
  10. Amy, Lon and Charlotte my thoughts are with you during this frightening time. The words you’ve written express the immense love and devotion you have for your child. There is no doubt that she will pull through this, as she has parents/family/friends that are unwavering in making sure she does.
    Amy our ability to solve the crossword puzzle has gone astray in your absence. Maybe you can send us hints so we don’t feel so unwise without you?
    Please know how much we love and care for you!

  11. Amy, Lon and Charlotte, We have had you in our prayers since we heard about Charlotte. So glad to have this website available.
    Please know that there will be better days ahead along with not so good days, but your faith and the strength of all the prayers being said for you will be your strength.

    God Bless you all!
    Jim & Bunny

  12. Thinking of you all. So glad you have this website so we are able to check-in to see how you all are doing. You are in our thoughts and prayers.

  13. We’re on our knees praying for you guys!

    Darren & Vicki Weinberger
  14. Lon & Amy:
    Keep holding on to those positive thoughts! Your strong energy and deep love of Peanut makes a HUGE difference in her daily fight against this terrible disease.
    Cheryl Batterman

  15. We are keeping Charolette and your family in our prayers! Please let us know if there is ANYTHING we can do!

  16. We are keeping your family in our prayers daily. Thanks for setting up this site to keep us all up to date.

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