Are you new here? Please click here for more information.   5 comments

Following is the story of how Charlotte was diagnosed and a very brief
overview of the treatment she received.

Starting the middle of August 2010, our normally healthy 27 month old
Charlotte started having episodes of uncontrollable crying.  One
minute she would be playing happily then drop her toys, look at us and
cry.  She was inconsolable.  Her crying fits usually lasted about an
hour until she would just cry herself to sleep.  After waking up an
hour later, she would look at us with a huge smile and just say,
“Hello Mommy” and resumed playing as if nothing had happened.  We
noticed that she also had a low grade temperature (99-100).  Thinking
these episodes may be a result of teething, we started giving her
Tylenol often and that seemed to keep any crying episodes away.  When
we did not giver her Tylenol, the episodes came every 1-2 days.

After about two weeks, we made an appointment with her pediatrician
who found CJ’s ear looked infected and set us up with a 10 day course
of antibiotics.  She also recommended we give her Tylenol around the
clock since it might relieve any pain the ear might be causing her.
After 8 days we stopped the Tylenol and her episodes returned that
morning.  The pediatrician suggested we bring her back in for some
blood work as Charlotte had some bruises on her legs.  We had noticed
them all summer but we figured it was because she was so active.  A
few more days passed before we were able to get a good blood sample
(once her blood clotted before the lab received it, one day the doctor
was out, and once the clinic was closed earlier than we expected), but
in the morning of September 9th Amy was able to get her back for blood
work.  The doctor called back late that morning and said that we
needed to get her to the hospital because her platelet count was
dangerously low.  She assumed it was ITP, a low platelet condition
that can happen to toddlers after an infection.  She thought we might
be in the hospital for a day or two while Charlotte received platelet
transfusions.

We got Charlotte to the hospital that afternoon.  The doctors there
also believed that her symptoms were very similar to those of ITP.
The senior hematologist thought that her hemoglobin level looked a
little low, which was not indicative of ITP, so he wanted to do a bone
marrow biopsy in the morning to rule anything out.  But he told us not
to worry, he was pretty convinced that this was nothing serious.  He
returned in the morning and said that the news wasn’t good.  He saw
evidence of leukemia and we would be sent to American Family
Children’s Hospital for diagnosis and treatment.

Later that morning, we arrived at AFCH and we met with the attending
hematologist/oncologist who reviewed Charlotte’s information.  She
felt quite confident that Charlotte had ALL, a much more common and
treatable pediatric leukemia.  The bone marrow biopsy slide from the
first hospital was not very definitive so another biopsy was scheduled
for the following morning when they would also install her port
catheter for chemo and associated treatment medications.  The next
day, September 11th, 2010, we had learned that Charlotte had the much
more rare and aggressive AML, with an even more rare subtype, M7.  The
survival rates we had been looking forward to had dropped from 95% to
around 50%.  The necessary treatment protocol involved harsh
chemotherapy and lengthy hospital stays of 3-5 weeks for the next 7-9
months.  A stem cell transplant would be an option if a suitable match
was found.  At this time, Amy was 7 months pregnant with our second
child.  Because of the uncanny timing of Charlotte’s diagnosis and our
due date, we had thoughts that this child would hold the key to
Charlotte’s cure.  If the new baby was a perfect match (25% chance),
we could transplant the stem cells from the cord blood after a couple
rounds of chemo and cut CJ’s treatment time almost in half.  Charlotte
started her chemotherapy regimen that night and we spent the next four
weeks in the hospital.

Cytogenetic testing on Charlotte’s leukemia cells found complex
abnormalities that kept her AML in the high risk category making a
stem cell transplant an almost certainty to give her a chance of
growing up.  Our second child, Molly, was born on November 20th, three
days before Charlotte’s bone marrow biopsy after her second round of
chemo treatment.  We found out 10 days later that she was not an HLA
match for Charlotte, and if a transplant was needed, an unrelated
donor would need to be found in the NMDP database.  The good news was
that there were already a few potential donors located and two had
been contacted to come in for further testing.  Some patients never
find a life-saving matched donor and we had more than one available.
The bad news was that it would need to be from an unrelated donor
which meant a much higher risk of very serious transplant related
complications.

She finished her third round of chemotherapy the second week of
December.  At that time we thought this was was her final round of
chemotherapy.  We planned on having a bone marrow transplant in early
2011.  We found out over the next few weeks that both the first and
second available donors had backed out after learning that our doctors
wanted stem cells collected from the bone marrow, not their peripheral
blood.  This delayed the transplant as we needed to further test more
donors (fortunately there were still some available) and have them
pre-approve a bone marrow harvest to prevent future complications or
delays.  This meant that Charlotte would need to come in for another
round of chemo until the donor could be finalized and the transplant
could be arranged.

Round 4 of chemotherapy finished after the middle of January and we
now had a March 11th date set for Charlotte’s allogeneic bone marrow
transplant.  She was released from the hospital at Day +28 and she is
now at home doing well.  She needs to be very closely monitored for
the next six months while her new donor immune system rebuilds and
will need frequent blood draws until at least a year post transplant.

Posted June 29, 2011 by L. Elske

5 responses to “Are you new here? Please click here for more information.

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  1. Hi, I stumbled on your blog via some extensive google searching. Thank you so much for sharing your story. The familiarity of it all is uncanny. My son is 2 and a half and was recently diagnosed (at 27 months) with AML M6/M7. He is also high risk and will be needing a bone marrow transplant shortly. My wife is also 8 months pregnant with our 2nd child. I don’t know what else to say, other than thank you for keeping your blog public so others can read and learn from your experience.

    I am overjoyed to hear that CJ is doing well more than a year after transplant. If you can, I would love to chat with you some more via email. If you’re up for it, please email me at akongx at gmail dot com.

    Thanks again,

    Anthony

  2. Hello, my story is deja vu to the comment above and yours. My son was diagnosed on Wednesday with M7 AML at 23 months old after an original ITP diagnoses and I am also pregnant. With so little information available out there about M7 it is incredible to be able to read your blog. A friend of mine stumbled on it yesterday and I haven’t made past Charlotte’s story above, but reading that made me cry with relief for someone out else that has been there. Thank you and I would love to be in touch with you if you are willing. Everything is still so new and scary for my husband and I that we don’t even know what to do at this point. You can reach me at DarcyEichasStatt@aol.com if you are comfortable. Thank you in advance for sharing your story ❤ Darcy

  3. Hello, i just finished reading a lot of your story and I am very touched. I am very happy for Charlotte and you and i hope that she continues having a healthy “normal” childhood. Our daughter was diagnosed in october 2013 with m7 High Risk. She was then 19 Months Old. Today, After Four rounds of high doseage Chemo, an enormous amount of complications and a bone marrow transplant from her older sister she is quite fine. Next wednesday she is 180 days post transplantation.
    It. is very relieving to read someones happy ending Story of that horrible desease, and it gives me the Hopes That our Story could lead to a happy endind, too.
    If your Time Allows it, i Would be happy to have some
    Email contact with you.
    I wish you all the best!
    Yours Sincerely
    Ursulaory snd i am very touched. I am very happy for Charlotte and you and i Hope rhet. She continues Habich a healthy “normal” childhood. Our fauchtet was Diagnosen lädt october with m7 High Risk. She was then 19 Montags Old. Today, After Four rounds of high doseage Chemo an enormous amount of complications and and a Bone Marrow transplant from her older sister she is Quite Fine. Next wednesday she is 180 days post kmt.
    It. is very relieving to read someones happyending Story of that horrible desease, and it gives me the Hopes That our Story Voile lead to a happy ending, too.
    If your time allows it, I would be happy to have some
    Email contact with you.
    I wish you all the best!
    Yours Sincerely
    Ursula

  4. Sorry, somehow a messed up version of my text got under the original one. Someones my IPhone is having a mind of its own.

  5. Hello, So happy to have found all of you. Thank you for sharing your stories. I have HOPE for all of you. First, my son has survived MF/ M7 and is 18 yrs past BMT. Also I believe HOPE is found in Jesus either way the story goes. Our kids are His kids and he loves them.

    M7, megakaryocyte , megakaryobastic leukemia was not even a documented cancer when my son, now 19, was diagnosed in 1997 at 10 months. In fact there were abt. 20 doctors trying to figure out what was happening because he had myelofibrosis -MF- throughout and 7 marrow draws later only 6 cells could be accessed. In 2008 MF was finally noted as a cancer by the World Health Organization. MF- myelofibrosis was the diagnosis my son was given at the time with everyone saying it looks like a leukemia called M7. It has taken a lot of research and waiting on my part to discover that it is a real cancer..M7. Even the CANCER hospitals did not recognize it as cancer because at the time – 1997-and later MF was not listed as a cancer nor were there infants that lived thru MF. It is wise to get all the information you can and write out your own heath history for your son/daughters future. Also note that the WHO is now (2012) calling MF a part of “myeloproliferative” neoplasm … a cancer (usually M7). Also and unfortunately, I believe our children have been exposed to chemicals in utero which cause these cancers.
    See the links below.
    In our case we lived near a site in CA that leaked jet fuel and chemicals TCE, PCE , HDMA ino the ground water. We lived within a two mile radius of the plant- unknown to us (renting). I was asked by the infectious disease doctor: “Where have you lived oversea? What drugs are you taking? What countries have you visited? Where do you work?” Bottom line, I was a homemaker living in a very clean, no smoking, drinking, chemical world and lived in the USA. We believe our son’s case is due to chemicals in the ground water passing thru the placenta from conception for months on end. Look into those sites. Due to transplant and full body radiation he has had significant dental issues – missing adult teath, small gums, loss of enamel, many root canals in the baby teeth, tons of cavities. This is not due to lack of hygiene. Dentists are wondering how he could ever wear dentures or have implants due to lack of bone density in the jaw bone. We’ve been seeing the late effects of significant growth hormone deficiency , vitamin D etc, stunted growth at 5’1′ and 98lbs, (was on growth hormones for abt 6 yrs.), acid reflux and scaring of the esophagus (recent), several skin cancer sights (recent), painful joints, thyroid lesions (8) with concern of cancer, bladder wall thickening (slight), hypertension (possibly Portal hypertension), cataracts at bay, lack of testosterone (therapy is very expensive)………..but HE is happy, a very hard worker and graduated with high grades in all classes. He is a lover of people and Jesus..and he’s a very dedicated hard worker at his current job. At age two he also suffered a TIA mini stroke and ended up having brain surgery for a frontal lobe clot. Another clot remains inoperable on the brain stem. The docs supposed this was due to cyclosporin raising his blood pressure to 170. We are a family of 8 and very blessed to have known him and lived with him. He gives hugs like no one else!

    Blessings-
    jambosana

    http://www.mpnresearchfoundation.org/Primary-Myelofibrosis
    Environment
    Exposure to petrochemicals (e.g., benzene and toluene) and ionizing radiation may increase the risk of developing MF.
    *****************************************************************

    Nineteen cases of the t(1;22)(p13;q13) acute megakaryblastic leukaemia of infants/children and a review of 39 cases: report from a t(1;22) study group
    January 2000, Volume 14, Number 1, Pages 216-218
    infant leukaemias have been suspected to have an environmental component; moreover, some leukaemias such as the 11q23 and the t(8;16) leukemias, known often to be related to genotoxic exposure, are also frequently found in infants.

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