November 23rd, 2010-Second bone marrow biopsy   14 comments

We didn’t have a lot to report yesterday.  Things are still going pretty well at home.  Charlotte is finding herself competing for Mommy’s attention (as one would expect), so she gets a little moody if Amy can’t pick her up or play with her at the exact moment she wants.  But overall, we can’t complain.

Amy’s parents have been with us for the last couple of days and that helps a great deal.  Her mom plans to spend another week or so with us while we transition from home to hospital for round three so we are very thankful for her help!

Tuesday the 23rd was a pretty busy day.  Charlotte’s bone marrow biopsy was scheduled for 7:30am so we had to get going right away this morning.  We loaded up the van with four of us and G&G Wags.  When we got there, Grandma E was waiting and Grandpa E was on his way as well.  We then found out the CT scan was the first on the schedule and that was at 9am so we were a little confused why we were there so early and wondered what time we would ever get home.  The CT scan was requested to see if the infection (or whatever was found) in the lungs on November 5th had cleared up or not.

The CT scan came and went without a hitch.  ***Although I would like to take the time to say to all of the parents out there:  If you have never held your son or daughter in your arms while they succumbed to the effects of anesthesia, then wheeled down the hall on the hospital bed while completely motionless and hooked to tubies, then please take a moment right now and say a little prayer of thanks.  It was not our first time doing it, and it won’t be the last, but it just pretty much sucks every time it happens.  As a parent, I don’t think I could feel more helpless.***

Dr Diamond came to see us briefly and mentioned that her CBC numbers were in and that she was pleased with them.  We were concerned because every one of them she gave us were lower or significantly lower than Charlotte’s tests last week.  Her white blood count was 3.7 (down from 5.1),  hemoblogin was 10.7 (from 11.2), her ANC was 1170 from 1220 and her platelets went from 416k to 250k.  So all of them seemed low to us and we didn’t like hearing them.  She also mentioned that she thought Charlotte was ready to start round three of chemo right away so she recommended we come in Wed or Friday and start that.  We were planning on coming back in on 12.1-12.3 so this was also alarming to us that she wants us there a week earlier than planned.  We left so Dr Diamond could do the lumbar puncture and bone marrow aspirate and also give Charlotte a standard quick dose of chemo in her spine.  They also gave her a flu shot while she was out.  Dr Diamond came and told us that we needed to get Molly registered in the UW system so that Dr Diamond can put through a request to have her blood tested to determine her HLA compatibility and see if her cord blood would be a good source of stem cells for Charlotte’s transplant.  Dr Diamond also said that the early results from the bone marrow aspirate would be ready in 45 minutes but she had other appointments that would occupy her time the rest of the morning so we would likely just go home and she would call us with the results.  We asked her about Charlotte’s declining CBC numbers and she was not worried at all and told us that her desire to start round three of chemo was a result of the fact that her numbers were high enough for treatment and the fact that Charlotte has AML- a rotten, aggressive form of leukemia-not that she is concerned about her outcome being affected negatively if we waited.  So Mommy and Grandma W took Molly up to the clinic to have her blood drawn and the rest of us went to watch Charlotte recover and wake up.  She was a little grumpy when she came to but wanted to walk the halls with us right away.  Of course, she was too wobbly on her feet to do any walking on her own, so the Grandpas, Grandma E walked around the short halls with me while I carried her from end to end.  Eventually, she was willing to sit in the play room and we waited for Amy and Grandma W to return.  We all left about 11:45 and headed home.

Dr Diamond’s call didn’t come until 3:30 so we were pretty concerned by then.  But she sounded pretty positive again as she gave us the early results.  Charlotte had about 4-5% leukemia cells show up in the aspirate (less than 5% is considered very good) but the official count won’t come back until tomorrow late afternoon.  The cytogenetic test results may not come back for at least a week or two.  The results of today’s CT scan showed to be the same as it looked on Nov. 5th so they aren’t positive about what is happening in her lungs.  But Dr Diamond wants to do another one in 4-6 weeks and we can look at that one and plan a course of action then.  She did confirm that we should plan on being readmitted for round three on Friday the 26th, unless something happens between now and then to cause Charlotte to be admitted early.  She said the results of Molly’s blood HLA Typing should be available Tuesday or Wed of next week so we might know if we will be doing a stem cell transplant in January as early as next week.  She also confirmed to us that it was also decided among the team of doctors that for Charlotte’s AML, the best chance of a complete recovery will be due to a successful bone marrow/stem cell transplant.  They do not think that 3-4 more rounds of chemo alone may be enough to keep Charlotte from a much more serious relapse.  We still consider the overall M7-AML prognosis numbers to be frightening low, but we can’t allow ourselves to think that Charlotte is just a part of a statistic somewhere.  And Dr Diamond is still confident that we caught her cancer early enough, and she has stayed very healthy throughout this process, so those are both good indicators that a transplant might be less risky and more successful.

Today was another very emotionally challenging day.  I don’t think that men in their mid 30s should be crying every damn day and I don’t think that parents should have to wonder what their lives may be like without one of their children, but this is the reality that we are living with daily.  With Charlotte’s diagnosis, we have come to realize that each day that goes by without bad news, is a good day.

Traditionally this is the time of the year for everyone to give thanks.  Amy and I are thankful for our wonderful families that have never left our physical or emotional sides since September 9th.  Without their love and support we may have already given up.  We are thankful for all of our hard working co-workers and friends at PDS and NESCO.  The Nov 4th benefit was such a success that Charlotte’s medical bills won’t be on the top of our worry list for a long time.  And Amy and I have been allowed to take time off while our friends at the jobs we leave behind have had to pick up the slack.  We are thankful for our beautiful healthy new daughter, Molly.  She has already given us inspiration to continue the fight so she can have a big sister to look up to.  We are also thankful for the staff of AFCH, who, through their quick actions and treatments, have already given us more time than we would have otherwise had with Charlotte.  But most of all, we are thankful for Charlotte, who still doesn’t know what is happening to her.  She still doesn’t understand that we could have lost her two months ago before she ever met Molly.  Of everyone involved in our lives over the last three months, the person who has consistently showed the most courage, every day, has been Charlotte.  Every day that we are with her brings another smile and another laugh and we can’t help but be thankful for that.

Love and peace to you all.  Have a happy and safe Thanksgiving.

Posted November 23, 2010 by L. Elske in Uncategorized

14 responses to “November 23rd, 2010-Second bone marrow biopsy

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  1. After reading this post, the tears are falling……we pray every day that Charlotte beats this monster and we know she will. Lon, Amy, you are incredible and your wonderful parents – I know you appreciate them more than words can say. Have a Blessed Thanksgiving and keep telling everyone about the benefit on the 4th at the Clyman Lions Park in Clyman, WI. Lots of great things and lots of fun.

    Auntie Sharon & Uncle Dean
  2. Amy and Lon-You two as parents are the best. Charlotte is blessed to have you by her side day and night. The strength and love you have for her is beyond belief. You have gone through more than most adults do in a lifetime. Keep up you positive thoughts for both you and Charolette. At Community Memorial we have prayers and thoughts every day!!!
    P.S. say hi to grandma!!!!!!!!!!!!!!!

  3. Prayers to you and your families. I don’t even know you personally and I sit reading this with tears. I have a 4 year old and rour posts remind me to be thankful for all he is, including the frustrations. Charlotte’s story has touched more lives than you even know and your strength and love for her is a reminder to us all about what is truly important in life.

  4. With tears in my eyes, i say Amen and God bless you. You all continue to amaze me.

  5. How do we make a comment, except with tears in our eyes, and a prayer in our hearts for you. We are so thankful to be a part of this loving family and are waiting for it all to be over and done. Love from G’ma and G’pa E

  6. There simply are no words……Our thoughts and prayers are with you always.

  7. What eloquent writing from a 30-something husband and father! You and Amy are amazing people, and your love for your family is prevalent in each of your posts. All we can do is send our love from Nebraska, and keep the prayers going up to the man above – to heal precious Charlotte so that she and Molly can grow up together. Keep the faith, even when it is tough, as only faith can provide answers that science cannot. We are all thankful for the progress thus far, for Charlotte’s continuing smiles and energy, and that you are able to keep everyone updated with this blog.

  8. I will pick up the slack in any way at any time I can for Amy, it is my small way to help you all during this time. My thoughts will be with you next week, hoping Molly is a match!

  9. First, CONGRATULATIONS on Molly! She is beautiful and I’m sure Charolette will be an awesome big sister!!

    I’ve been meaning to write for so long to express how incredible and inspirational it is reading your posts and learning about this journey you all are on. I can’t begin to truly understand what an emotional rollercoaster this experience has been for you guys, but just know how much I appreciate the daily posts and I am keeping all of you in my thoughts and prayers. I’m sure this Thanksgiving is extra special.

    Molly Krause-EMMCA
  10. And we are thankful to you for the inspirational posts. Happy Thanksgiving to you and your family 🙂

  11. Amazing strength, courage, love, faith and support. You all are a inspiration for everyone around you and those who read this blog. You’re so right we all have so many blessings to be thankful for. – Best wishes for a happy, healthy and relaxing Thanksgiving for you and yours.

  12. Happy Thanksgiving; We Will talk to you later today . Talked to Grandpa W yesterday.Enjoy your day and relax with your family.Think of you daily. Aunt Mary

  13. I have tried to read this blog twice – the first time my eyes were too clouded with tears to focus =( We are so thankful for Amy and Lon. And if Charlotte could express it – she is too! I explain “Thankfulness” to my class as something you love with all your heart and you would be sad if you didn’t have it anymore. That simply sums up this Thanksgiving and puts into perspective all of our blessings. Amy you’ve always been an inspiration to me (the majority of my life)…and although my children are older – you continue to be an inspiration to me as a mother. Thinking of all of you on this Thanksgiving…the 4 of you are counted in our blessings.

  14. We wish you and the family a good Thanksgiving.

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