March 11th, 2011. Charlotte’s unrelated bone marrow transplant day.   31 comments

6 months ago, Amy with CJ while she recovers from her port catheter surgery on the morning of Sept 11, 2010. Note the bruises on her legs.

6 months ago to the day, we were informed of Charlotte’s horrific diagnosis of AML-M7 and a long uncertain treatment path.  She started her first

6 months and 1 hour after the first picture was taken-Amy and Charlotte the morning of her bone marrow transplant March 11th, 2011. See her port and PICC lines and the ATG rash on her chest, arms, face, head.

round of chemo 6 months from tonight.  It is hard to believe that it has been so long, but here we are.

We found out this morning that her donor stem cells arrived last night and the transfusion is scheduled for 2pm today (30 minutes from now).

Charlotte’s blood levels are dropping pretty low.  Today her white blood cell count is down to .4, and her platelets dropped to 40k and hemoglobin to 8.1.  So she is now experiencing the crash after her chemo so she is getting pretty moody and needy.  We knew this would come, but I didn’t think it would happen today…I was kinda hoping for another couple of days, but we know it is working.  Her ATG rash is back and has spread over many areas of her body so they will give her some more IV hydrocortisone to contain it.  She is trying to get a little nap in now before the heavy vital sign monitoring starts.

I will update later today as there is more information to pass.

Thanks for all of your prayers and support.

Update:

Dr Patel and NP Lisa with the donor stem cells and our fabulous nurse Tracy prepping her IV cart for it.

Charlotte has been receiving her new stem cells for the last hour and a half.  The transfusion hit her little arm at 2:30 and it will take about 6 hours to completely get the donor’s cells into her.

Here we are while CJ receives her new stem cells. Sleeping right through some of it.

They are monitoring her vital signs closely, but so far, all looks good!

Here is another update:

It is now 8:10, her blood bag is being flushed so Charlotte gets all of the cells possible from the bag.  All of her vital signs have been good.  She took a great nap throughout the first half of the transfusion and woke up pretty happy.  She wanted a couple of small mini oreos and something to drink right away so that was a good sign.  At about 6pm the doctors stopped in with some interesting news.  When the donor donates their stem cells, a blood culture is taken to make sure the cells are not contaminated.  Well, we got news today, halfway through her transfusion they told us that the donor site contacted AFCH and said their culture tested positive for bacterial growth (I am not sure if I am wording this right or not).  They didn’t have any more information at the time so nobody knew much more…the good news was that she has been on two antibiotics since her culture tested positive a few days ago so she would probably be pretty well covered.  The doctors and nurses said that this was not very common, and none of them had really seen this before.  But Dr DeSantes, the head of the transplant team, said he was not that concerned.  They reassured us that he wouldn’t say that if he didn’t mean it, so we are trying to feel positive.  We are very concerned that we just spent 4 hours (now the full bag is about done) giving our little neutropenic, unprotected girl a bag full of infected stem cells.  I am not sure if it could get much worse than that.

CJ feeling better while she is still getting the transfusion. Wth her new favorite toy, the iPad.

Charlotte really perked up after her nap and she has been up and pretty happy since then.  We ordered her the standard dinner, hot dog, fries,

Charlotte showing her Thumbs Up while she is enjoying her "new birthday" cake. She had two bites of the frosting 🙂

spaghetti-o’s and she didn’t want to touch them.  An hour later she just mentioned to Amy that she wanted pizza.  We hadn’t ordered pizza, but I bought a frozen meal at the hospital corner shop the other day and remembered that we still had it in the freezer.  So I went to the kitchen, fully expecting to have her change her mind by the time I came back, but she was still wanting pizza.  She ate about a third of the single serve thing so we were pretty darn impressed.

And another update:

It’s now 9:40 and CJ has been going pretty strong.  They are still flushing the bag out to get all of the cells, going on 7 hours now.  She seems to be feeling very good because she is still loving to play.  The doctors have said that donor site culture tests have come back positive for gram positive cocci bacteria (this is usually staph).  This is pretty good news considering our situation.  This type of infection usually responds well to the antibiotics she is already on, and there is still a chance that it was externally contaminated, giving a false positive result.  If it was growing gram negative, it is usually harder to treat and less likely to be a false positive test.  So I suppose this is about all we could hope for now….It is still scary to think about what could happen, but we will continue to hope for the best.  They should find out more as the growth progresses and then they can test it for sensitivity to particular antibiotics.  Our nurse has already sent our own blood culture (from the donor blood) to the lab, so we are praying that this comes out negative.  We probably won’t know until at least this time tomorrow night.

Eating her specially requested pizza. This might have to be a tradition for us every year on her new birthday.

Charlotte has one more vital to take tonight, then she gets 4 hours off.  Her rash is starting to come back, but she has been unhooked from everything

Still feeling great, playing Monster with the hamper while her bag finishes the last flush.

for the last 8 hours while the stem cells are being transfused.  So they will try to get more hydrocortisone in her soon and then the rest of her antibiotics, fluids, heparin drips, etc…all start again tonight…we have also seen her rash on her bottom improve with the hydrocortisone, so that may have gotten worse from the ATG too.  We hope that gets better shortly with the medicine and a little rest.  Her diarrhea has been gone since this morning (knocking on wood) and she has been done with mandatory every-two-hour diaper changes for almost two days now.

10:15pm and her final bag flush is done.  Her last vitals of the night went well too.  Amy and I are going to try to get her to sleep, but true to Charlotte form, she has been sitting on Mommy’s lap watching Shaun the Sheep.  I couldn’t think of a better way to end the day.

Thanks to all of you for checking in with us.  There are still a few long and hard weeks ahead.  Charlotte is no doubt going to start feeling worse in the next few days, but Amy and I have been talking today-we are so happy that we are done with giving her the damaging medicines, the chemo and the ATG.

From now on, Charlotte is going to feel bad sometimes, but it will be because her body will be getting better, not dying off.  This will be her cure.

Posted March 11, 2011 by L. Elske in Uncategorized

31 responses to “March 11th, 2011. Charlotte’s unrelated bone marrow transplant day.

Subscribe to comments with RSS.

  1. I’ve been checking your blog all day hoping you would post. I’m so glad to hear that the donor bone marrow made it. I thought of you guys at exactly 1 pm because I thought that’s when it was going to start, so I’ll just continue to think of you guys and pray.

  2. Our thoughts and many prayers are with you all. The tremendous strength your family continues to show is inspirational.

    With love,

    The Freislebens

  3. Thoughts and prayers with you all. If you’ve had a chance to look outside, its beautiful – spring abounds with new beginnings; and this is a new beginning for you all.

    ~ Kim Kirchberg Lafler

    Kim Kirchberg Lafler
  4. It’s 2:15 and we are saying a prayer for Charlotte. May God bless her and keep her in his mighty hand.

    Auntie Sharon & Uncle Dean
  5. Can’t stop thinking about you guys today! Prayers and thoughts are with you!!!

  6. Little miracle cells going into little miracle Charlotte!!!

  7. Been thinking about all of you all afternoon,and thought I will check the blog, lo and behold Lon has kept us posted >Thank you it helps to know the treatment is happening as planned Uncle Ray and Uncle Wally just called so now I can tell them also as we are getting together tonight. . Keep the faith better days are ahead. Auntie Mary

  8. Lon and Amy,

    You are in our unceasing prayers! We serve a Mighty and an Awesome God!!!

  9. We’ve been thinking about Charlotte and you guys all day long… sending many prayers, thoughts and hope your way.

    Justin & Holly Christian
  10. Thinking about you all day long. Many prayers continue to go out for all of you.

  11. Just gave Lyle the update and he says, “Yay, go Charlotte go!”. Many people on FB also send their love and prayers for Charlotte including Tim & Eileen. They wanted me to let you know that not a day goes by they don’t think of you or pray for you and they wish they were here to hug you. You are all surrounded by so much love today.

  12. You have been in our thoughts and prayers all day today. May God’s love keep you strong. Charlotte is in his loving care. Sending our love and prayers to all of you.

    Joan and Bob Sennhenn

  13. Our thoughts and prayers are with you all today. God has his hands on Charlotte throughout this ordeal.

  14. I didn’t realize until I had reached the end of the blog – that I had been holding my breath until I finished reading it! SO glad everything is going well =) Thank You for keeping us updated so quickly. So many people are praying and waiting to here all the good news!!

  15. Thinking of you all – and praying for all good things!!

  16. Praying for more good news!!

  17. Although we haven’t chatted lately I’ve been thinking about you every moment of the day. I hope the donor marrow does it’s job and CJ can finally be on the road to recovery! Let us know what we can do for you. P.s. Brett calls CJ often to say “hi. Snowplows are out. Go blow snow with snowblower. Love you. Bye!!”

  18. Your updates have been great!! Been checking on them throughout the day.
    stay positive–recovery is on the way along with spring. Keeping the prayers coming from here. Go Charlotte, go!!! LOL

    Steven & Terry Licitar
  19. I don’t think, I’ve seen you so happy, and looking so confident. We all love what you post so we too canbe aware of progress. Prayers, and love from G’ma,G’pa E and Molly as we await your triumphat return to Columbus. Love you guys and keep up the good spirits. From her on in it’s all down hill.

  20. Happy New Birthday Charlotte!!!
    We have been thinking and praying for you and for your Mom and Dad. Thanks Lon for the pics. So hard not be there but Molly needs her Grandmas and Grandpas too. She had so many smiles and talked Grandpa’s ear off. She knew the importance of today and wanted to be included too. Always in our prayers. Sending lots of hugs and kisses and a thumbs up.

    Grandma and Grandpa Wags
  21. Lon & Amy,
    We’ve been checking the blog closely here; so thankful you are doing this. It helps us to feel connected as we pray for Charlotte and for you.
    I know that, even as you surround Charlotte with your love, God’s love is surrounding you.
    It thrills me to see Charlotte playing with the hamper in the midst of it all!
    Jim

  22. What an amazing journey it has been….What an amazing little girl and her equally amazing parents! SO happy the final leg of this journey has begun and I am so confident we will be seeing Charlotte celebrate this birthday for many, many years to come. Happy CF (cancer free) Birthday to our courageous little fighter, CJ! May the hard days be few and the good days be plentiful. Sending prayers up and much love and support over to you all. Debbie

  23. Our prayers and thoughts have been with you since we left Columbus on march 1. I’m borrowing a friends iPad to check charolotte’s blog. What a big relief it was to discover she’s doing so tremendously well throughout the chemo and the bone marrow transplant. It did my heart good to see her playing soccer and the pic of her with the hamper on her head! Good luck in the next couple weeks as she recovers from the transplant. Keep up the good work with the blog, Lon. With love and friendship, Jim and Judy vale

  24. Thanks for the updates, Lon. Knowing what is happening is comforting. She is one tough little fighter. Love the pictures. Praying for continued positive progress. Hugs to everyone.

  25. Sorry I didn’t get our message through yesterday, but my shaking was so bad I hit the (ctrl) key and everything went blank. None the less our prayers were with you three all day and night. Prayers will still continue until precious Charlotte is home and healthy again. We know that Charlotte is a fighter and now it’s toward the goal of a healthy life. Much love from us.

    Uncle Jim and Aunt Judy
  26. What a great bunch of people you all are. I know some and you guys are so loved Lon & Amy & Char. Charotte you are on your way to getting better each day. Our prayers are with you. Grandparents you are precious to.

    Joe & Sue Kaminski
  27. Wow. What a day, what a six months you’ve had. We’ll keep praying!

  28. Glad to hear all is well, we’ve been praying for charolette and her donor the past week, and we’ll continue to keep all of you in our prayers.

    Darren & Vicki Weinberger
  29. Healing love to Charlotte and her family. Stay strong and fell the love from everyone who is supporting you!

  30. Hello,
    I just wanted you to know how much your published blog has meant to my family and I. Our daughter, Emma James Putnam was diagnosed 5 months ago in October 2015 with charlottes exact diagnosis. In fact, today she is receiving her 9 out of 10 unrelated donor ( 22 yr old male from Germany) . We are extremely nervous , but we are maintaining our faith. Like you said before , ” there isn’t a whole lot of blogs or research online in regards to Aml 7 . I just wanted to let you know how much we appreciate a story to follow that gives us some more hope. God has a plan and he knows the outcome , but it doesn’t mean we can’t hold on to a great story like yours . God bless.
    The Putnams !

  31. Ps. She is 15 months old. My email is Justinpu1986@gmail.com if you would like to chat .
    Thanks,
    The putnams

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s