Here is a little bit about Charlotte’s story.   6 comments

Starting around the middle of August, Charlotte started to be a little more fussy than normal.  We really thought it was just teething as she has always been a tough teether (and she did get 3 new teeth during this whole ordeal).  Suddenly she began to have “clingy episodes” in which she would be playing wonderfully by herself and all of a sudden start crying and want to be held.  The crying was one we had never heard before…as if she was in pain.  Comforting and hugs could not easily console her and she would eventually fall asleep in our arms after crying.  She would stay there for 1-2 hours and then wake up as if nothing happened.  These episodes were not consistent, often happening every 2-3 days.  Still thinking it might be related to teething or a virus, we offered Tylenol and this seemed to keep all episodes away.  Eventually, we experimented with not giving Tylenol again and the episodes starting coming daily and sometimes more than once a day.  We made an appointment with Charlotte’s doctor, Dr. Gindlesberger (Dr. G) for August 30th.  Dr. G was puzzled a bit by the symptoms of these clingy episodes and low grade fevers, but also found Charlotte to have a right ear infection.  We left feeling hopeful that she would soon feel better after her 10 days of Amoxicillin.  We were also told to keep Charlotte on Tylenol around the clock to give the antibiotics time to kick-in, but to stop the Tylenol a few days later to see how she did.  Again, on round the clock Tylenol, Charlotte appeared just fine.  On Thursday, September 2nd, we stopped the Tylenol only to have a clingy episode reappear.  Dr. G was called, but told us to continue the Tylenol through the weekend and try stopping it again on Labor Day.   When Labor Day came with no Tylenol, two more episodes occurred and an appointment was again scheduled with Dr. G for September 7th.

Septermber 7th, 2010

Dr G looked in her ears and saw no more sign of infection and suggested blood work to check Charlotte’s platelet count.  (Charlotte had bruised easily all summer and we never had been overly concerned as she was so active and the bruises were normally only on her legs).  A finger prick was taken at the Sun Prairie lab and Amy and Charlotte headed home.  When they got home, the lab had called on the home telephone and left a message that Charlotte’s blood had clotted and the blood work would need to be redone.  We called the clinic asking what time the lab was open and were told 7pm.  So Amy and I planned to return to Sun Prairie after I was done with work.  When we came back to the clinic we found everything closed and locked for the night.  Apparently both of the people we talked to thought that today was Monday (since yesterday was Labor Day) and gave us the wrong business hour information.  We would have to try again tomorrow.  We had promised Charlotte that we would go to McDonalds after the appointment so we just went there now instead.  She had a swell time playing in the children’s area!  After thinking about the repeat finger stick all night, Amy emailed Dr. G to ask if a complete CBC test and urinalysis could be completed instead of just the platelet count to try to avoid Charlotte having repeated finger pricks.

September 8th, 2010

Dr G was out of the office today, so Amy’s email questions about whether we could just get a complete blood workup instead of a simple platelet count went unanswered and the blood draw went unscheduled until Amy received a call late in the day approving the tests.  One more day to wait.

September 9th, 2010

Amy took Charlotte to the clinic for the blood work in the morning and waited to make sure the blood did not clot again. Then came back home to take puppy to the groomer for his haircut.  Dr G called her within an hour saying that we needed to get packed and get Charlotte to St Marys because her platelet count was dangerously low (Normal is 150,000, but Charlotte’s was under 10,000).  Dr G figured it might be ITP and thought we would be spending a day or two in the hospital getting platelet transfusions as all of the other lab work appeared normal (with a slightly low Hemoglobin).  ITP is a fairly common illness in which your own antibodies attack your platelets – generally after a virus.

I came home from work by noon and we got a few things packed and headed to St Marys.  I had to call Dad to pick up puppy and explain the situation that we would not be home tonight.  Dr. Sabrina Wagner (hospital pediatrician at St Marys) ordered another CBC and thought it was also ITP but wanted Dr. Dvorak (hematologist) to take a look.  He wouldn’t be there until at least 6:30pm.  Grandma and Grandpa Wagenknecht and Grandma and Grandpa Elske all kept us company while we waited.  When he finally arrived, Dr Dvorak looked at the results and said that he also thought we were looking at ITP, but noticed the Hemoglobin count was a little low and that was not following the textbook ITP symptoms.  So he wanted to get a bone marrow sample in the morning and take a closer look.  He said there was a slight possibility that it could be Leukemia, but was really quite certain that this was “nothing scary”.  We went to bed hopeful.

September 10th-transferred to American Family Children’s Hospital, 2010

Charlotte was sedated first thing in the morning Friday to take a sample of her bone marrow and have it analyzed.  We saw Dr Dvorak walk off with it and expected results within 30 minutes.  He was only 15 minutes late in getting to us, but had the whole staff with him.  He said the news was “not good”.  Charlotte had Leukemia and she would need to be transferred to UW Childrens Hospital right away for further testing and treatment.  There was not a dry eye in the room.  Even Dr. Dvorak (a veteran doctor in his late 60s/early 70s) was upset.  We arrived at UWCH at 11:12 Friday morning.  We were quickly greeted by Dr  Carol Diamond, the attending physician.  She mentioned she had reviewed Charlotte’s results and said that she felt pretty confident that this would be ALL, the much more treatable and happier ending Leukemia (95% success rate).  They were going to try to get her into an OR for another bone marrow sample because the one from St Marys was not a very reliable sample and the Leukemia type could not be confirmed.  But she really felt this was ALL and had every reason to believe that we would be able to beat this with only a short week long hospital stay of chemotherapy and outpatient visits and at-home medicines.  The OR didn’t have room in their schedule to fit us in until first thing Saturday morning.  So the remainder of our day was spent with interns, residents, assistants and attendings poking their way into Charlotte’s vitals and feeling up her body for oversized lymph nodes or organs.

September 11th, 2010-Diagnosis day.

Again, another bright and early start with a 7am OR trip.  Charlotte would have a single port installed in her chest (typical for ALL patients) with a direct line to her veins so we could lose the wrist IV line.  She also had another bone marrow sample and spinal tap while on the table.  The spinal tap would show us if the leukemia was in her nervous system.  She also received her first chemo drug directly into the spinal cord just in case leukemia was present.  Dr Diamond returned to us after the surgery and after she had the results back from the bone marrow sample and came to our room with a posse of Drs and students.  Again, she apologized to us while she told us that Charlotte had the more rare and serious AML, not ALL like she was originally 95% sure of.  She went on to talk about the long road of treatment and how it will not only break down Charlotte’s body during many different treatment rounds, it will tear the family and our lives apart as this treatment schedule requires hospitalization stays of 7 or more months.  Usually treatment for 4 weeks, then perhaps a return home trip of one week, only to be back in the hospital for another 4 weeks…thus the cycle will continue until the treatment is complete.  All told, this could take up to 10 months, 80% of which will be spent in the UWCH behind closed doors on the south side of 4th floor.  It reinforced to us just how aggressive AML is.

The overall success rate is nowhere near as high as the ALL cancers, but still about 60%.  Our options were very limited as Dr Diamond told us that if left untreated, the leukemia would kill Charlotte within two to three weeks.  At this time we also discussed the possibility of using our unborn baby’s cord blood.  This may be an option (if an appropriate match). It could shorten Charlotte’s treatment time in the hospital by half, and could increase her prognosis another 5-10%.  She also mentioned that a positive aspect about Charlotte’s condition was that she noticed no swelling of the kidney, liver or spleen. Often when children are diagnosed with AML, their organs have already been overcome with the cancer that it makes it more difficult to treat.  So we may have caught it just at the right time.  We are still taking this as a good sign, and perhaps some of the only good news we have received in this whole process.

Because AML is so aggressive, we were told that chemotherapy would begin as soon as the pharmacist could prepare the medications.  Chemo started at 8pm with a drug called Cytarabine that is pushed into her port in under 15 minutes.  We were told that this drug could cause high fevers.  This drug will be given every 12 hours for 10 days.  The second chemo drug (Daunorubicin/Daunomycin) was given as soon as the first was completed.  This drips for 6 hours on 3 separate days during the 10 day cycle.  This drug causes Charlotte’s urine to turn red.  The third chemo drug (Etoposide) was started at about 3am, drips for 4 hours, and is given every day for 5 days of the 10 day cycle.  This drug can cause the blood pressure to drop, so Charlotte’s blood pressure must be checked every 15 minutes for the first hour, then hourly if everything is okay.  Charlotte also has a list of oral drugs she must take (complete list to follow).  Needless to say, our peanut did not enjoy vitals being taken so often and in the middle of the night.  Not much sleep was had by anyone this first night.  Due to the chemo drugs being highly concentrated in Charlotte’s urine, Amy has been advised that she must wear gloves to change Charlotte’s diapers and must shower immediately if urine touches Amy’s skin through a leaky diaper.

A little bright note today.  My sister, Lynn, drove in from Nebraska today to spend the next few days with us.  We couldn’t do any of this without our family being so supportive!  Come back soon sis!!

Thanks for taking the time to read Charlotte’s story.  I apologize for its length.  When Charlotte was first diagnosed, Amy and I were surprised to find the internet has very little information about this horrible disease, and even less for AML-M7 patients.  So Amy and I agreed, no matter how this would turn out, to keep track of our experience so others that have had this diagnosis can follow our progress.  It is our plan to have this become a beacon of hope for those recently diagnosed.

Charlotte’s diagnosis received another blow on Sept 29th, when we found out the results of her cytogenetics test.  The official answer was that she has “complex cytogenetics” which usually means an even lower prognosis.  This will likely make her treatment include a transplant of some sort.

You can continue to use the archive links (dating back to September 2010) on the left side of this site to see how life started to change for us over the next couple of days and weeks and months…

Posted December 2, 2010 by L. Elske

6 responses to “Here is a little bit about Charlotte’s story.

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  1. You don’t know us — my husband and’ I live in Watertown. I read your article in the Daily Times Know that our prayers are with Charlotte and your family now and will continue.
    We have a 6-month old grandson, Malakai, on the 4th floor. He has a congenital heart defect and has been in and out of hospitals since he was born. He’s been in Madison this time since the day before Thanksgiving. If you’re interested, his website journal is: caringbridge.org/visit/malakaikaesermann
    I’m going to send this site to my daughter-in-law. I know she’d be interested.
    I’m wondering if Charlotte is located on 4th floor? I think we ran into her grandpa at the elevators last Monday; he mentioned a 2-year old with leukemia. I didn’t connect the dots until I read the Times.
    We would like to send some financial help for Charlotte. I assume we can send it to you at Am.Family Children’s Hospital?
    God be with you all at Christmas and always.
    Phyllis

    Phyllis Kaesermann
  2. My name is Amber. My mother in law already wrote you a message and then forward your blog to me. My son is at Am. Family Childrens Hospital right now. He has a congenital heart defect and has had two heart surgeries since birth. He is six months old. He is hospitalized right now with complications. I was very sad to hear your story. It sounds like you have a very strong little girl. I will add your daughter to my prayers and wish God gives her the strength for a full recovery. If you need someone to talk to, I am here. Even though our stories are so different, I am sure we can relate to eachother in many ways. Take care and God Bless.

  3. Hello Elske family — I read alittle about Charlotte’s story & also read Alison Forester’s post for today. Cory mentioned that your daughter was going to be getting a BMT this month — I wanted to let you & your family know that I just received a bone marrow transplant from my younger brother just 1 year ago last month! Granted, I was 28 when I received my transplant, but none-the-less it was a scary, adventurous time in my life. I was also diagnosed with A.L.L. in 2008, then after a relapse was told that a transplant was necessary. Thankfully I had a match in 1 of my brothers & the transplant went really smooth (very anti-climactic). I just want to let you know that if you have ANY questions about the transplant process or anything that someone who has been through it can help with, I would be willing to answer any questions! I hope everything goes well for Charlotte — she will be in my thoughts this month!!! Take Care – Summyr Zuern (www.caringbrige.org/visit/summyrzuern)

  4. Thank you, Elske famliy, for your commitment to offering your story as a beacon of hope for AML-M7 patients. Our 21-month-old daughter Jade was diagnosed with AML-M7 on January 13, 2012 and we have been eagerly seeking out stories of young survivors ever since. There is definitely comfort in knowing that children do come out on the other side of this as happy and well-adjusted as your Charlotte. Prayers for your continued strength. Take care, Taneika (www.jadeamarah.blogspot.com)

  5. I am so grateful that your daughter is doing so well! Our daughter was 21 months old on June 1st 2010 when she was diagnosed with AML-M7. She has been in remission for 15 months now. She did not get a bone marrow transplant. When we were first diagnosed I would look all over the internet for stories like ours, but never found any until just recently when others have found our blog. I wish there was some way to connect with other moms/families that have little girls with AML because it helps me see the light and hope that other little girls are suriving. It was so hard, but we are so grateful for every living moment we have with our Erin.

    Lots of love!
    Jill (Erin’s mom) http://www.littleairbear.blogspot.com

  6. You should contact Julie Locke. Her son dax had aml m7. His caringbridge site is http://www.caringbridge.org/visit/daxlocke. He sadly passed away from his disease but I know she’s very helpful to families who are struggling with this.

    God.bless you and much prayers.

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