On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Monday, August 22, 2011

Side Effects and Late Effects of Acute Myeloid Leukemia

It has been 8 months since Erin finished treatment.  I can't believe how time has flown and how much Erin's hair has grown in that time.  Here she is in January just before she got her central line pulled.

And here she is just last week.  Look at all that hair!

It's amazing how HAIR can make someone look so different (I still miss rubbing my cheek on her bald little head).  It is such a wonderful feeling running my fingers through her soft light brown hair.  Last year I made many memories of myself running my fingers through her blonde hair right before it fell out.  I wish we had had an opportunity to take some professional pictures of her before her hair fell out, but it just couldn't happen.  She was so sick the day she was diagnosed, she was admitted for her first 29 day hospital stay and pumped with high dose chemotherapy, her immune system was non-existent, and in just 20 days all of her hair was gone.

Well, now she's pretty healthy.  We have her 8 month check-up on Thursday.  I have to admit that it's been hard to go 2 months between check-ups.  I must be crazy because the thoughts of relapse really haven't subsided.  I wonder if they ever will. 

A few nights ago Erin had a bad dream and woke up screaming.  John and I rushed to her, we tend to rush more to her than our other kids, I have debated whether I'm parenting fair, but in the end we've decided that Erin is different, everything is different with Erin.  Cancer changes everything.

In her dream she was screaming, "don't, don't.  Ouch, ouch." and lots of other things.  Old memories of her being pinned down in ICS at Primary Children's getting various "procedures" done rushed back into me.  She screamed another time in the night with some of the same things.  I laid in bed being mad at cancer that night.

Erin still takes a good 2-3 hour nap each day, she has bruises on her legs and she is always cold and hungry.  I have the hardest time wondering if I'm doing the right things as a parent.  I just can't decide if she is being a normal 3 year old or if she is struggling with something.  Before leukemia I wouldn't have thought twice about a bruise, but now, a bruise is a sign of cancer because that was how it all started.  I feel insane because every little kid gets bruises on their legs, every kid complains about being hungry.

So now on to side effects and late or delayed effects.  These are some things that I just couldn't look up for a long time.  I didn't ask too many questions when Erin was getting treated, but I've finally decided that I need to know these things so that I can be aware of any potential problems. 

Erin is in remission for her cancer and her hair is growing.  Seeing her now you would hardly know that her life hung on a thread.  To sustain her life she was filled with toxic chemicals (high dose poisons) and hopefully she will continue to be healthy and strong.

John and I called the LLS (Leukemia & Lymphoma Society) and they sent us a very informative packet called "Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma".  Here is what I have found that applies to Erin:

-VP-16/Etoposide chemotherapy can cause her to become anemic again and she could have bone marrow failure which can then result in a secondary cancer (usually AML).  In her case, she would relapse into a more vigorous form of AML than she previously had.  This is one of the biggest side effects that I worry about.

-Daunorubicin and Mitoxantrone chemotherapy can cause heart damage (heart muscle injury, chronic heart failure).  She had several ECHOs and EKGs while in treatment.  She will continue to have these periodically throughout her lifetime to check her heart function.  Sometimes the heart damage appears immediately, sometimes it takes years to develop.

-Most survivors go on to have a low risk for infertility, however a small number are unable to have children due to a failure to ovulate and/or conceive, have irregular periods, or develop early signs of menopause.

-Fatigue or an unusual tiredness that interferes with daily life and cannot be overcome by resting or a good night's sleep can happen.  It affects many patients of all ages treated for Leukemia.  For some patients, fatigue following treatment can last for months or years, causing physical issues such as difficulty performing daily tasks and cognitive issues such as concentration problems.

-Learning Disabilities can occur quickly or become evident years later such as problems with thinking or memory, spacial relationships, concentration, planning and organizing, attention span, reading and spelling, processing speed, visual memory, understanding math or remembering math facts and problems with fine motor coordination like hand writing.

-Most survivors are psychologically healthy, but childhood leukemia survivors were more likely to report changes in mood, feelings or behavior, including depression or post traumatic stress disorder.

I'm not trying to be scary, just informed.  I really hope Erin is immune to these effects.  There are many kids who develop only small effects and there are some who develop severe effects.  It's like a lottery.  It makes me wish more than ever that there could be a better way to treat cancer. 

There are so many regulations in the FDA that it is nearly impossible to clear new treatments, yet kids are dying all the time because new things aren't being tried.  I wish we could see more like THIS most amazing study.  The scientists took the patients blood, altered it and then put it back into the patient...in TWO WEEKS the cancer was gone.  No crazy side effects. 

This is why I am so passionate about childhood cancer research and about CureSearch.  I was so excited to find out that CureSearch is donating $5.5 MILLION dollars to childhood cancer research. 

Some of that money comes from the money WE RAISED for our CureSearch walk!  Isn't that exciting that we are a part of finding a cure?! 

They are giving $1.5 million to COG (Children's Oncology Group) Hospitals, like Primary Children's to help in the cost of enrolling patients in clinical trials.  They will be giving $3.5 million to some specific cancer research and AML (Acute Myeloid Leukemia) is one of those specific cancers they are researching!  $500,000 will go towards informing Doctors and nurses and funding projects with the COG. 

Isn't it nice to know you have made a difference?!  Thanks again to all of those who donated to our CureSearch walk.


  1. Oh Jill, I know what you mean, about not looking this stuff up! But I think at the time when you are going through all of this, you just go day by day, who has the time, or the brain capacity to take it all in anyways! Right now at this time you are just happy to have her alive and well.....it reminds me of a quote Nick and I always say from the movie Raising Helen "we'll fix it later" sometimes I feel like that! Sometimes it seems...we will coss that bridge when we get there....but for now take it day by day! I have noticed Fayes hair is coming back a little....I so associate with you on all the feelings of hair!

  2. An interesting list of side effects. Very sobering. I can understand the conflicting emotions to look those up.

    I was excited to read about that new study too. It is heartening to see where the money raised is going. That's awesome.

    And I love seeing Erin's hair. She's beautiful with hair and without!

    On another note, my sweet childhood friend Lani just lost her little Daniel yesterday. :(

  3. It's good to know what to keep your eye out for. It's usually easier to remedy things if you catch them early. Erin is so young she's probably immune to everything by now. I bet the nightmares will decrease with time.

    Good luck at Erin's check up. It's summer and I bet she's running around a ton - probably a lot more than she did when she was sick. It's not surprising she has bruises on her legs.

  4. Jill...wow, thank you for this post. I hate that we have to worry about "late effects" but I love the comment from your friend, Nick & Stacey about crossing that bridge when we get there. I haven't been able to even think about these things until pretty recently and it's still pretty tough to try and tackle. It's all so overwhelming at times, but here we go, looking at that bridge in front of us and take one step at a time right?
    Thanks for all your updates on Erin...I love reading about her journey, her recovery and how well she's been doing. It's inspiring and so comforting for me! <3