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.

Her Story

This Acute Myeloid Leukemia Blog In A Nutshell

The Story of a two year old and Acute Myeloid Leukemia M7!  For those of you who have happened upon this blog by chance today I hope that this particular post can give you an overview of the roughly 300 posts on this blog.  I have added hyperlinks all over so that you can navigate your way to the monumental moments in Erin's story.

I started this blog June 2, 2010, the day after we found out that our 23 month old Erin was diagnosed with AMLeukemia.  I had never blogged before.  It started out as a way to communicate to our friends how Erin was doing and a way to keep track of what our family was going through.  When Erin was diagnosed we had 3 children; ages 4, 3, and our almost 2 years old Erin.  I hope that this blog can be used in the future as an uplifting glimmer of hope for others out there who are going through similar trials.

"...the dial on the wheel of sorrow eventually points to each of us. At one time or another, everyone must experience sorrow. No one is exempt . . . Learning to endure times of disappointment, suffering, and sorrow is part of our on-the-job training. These experiences, while often difficult to bear at the time, are precisely the kinds of experiences that stretch our understanding, build our character, and increase our compassion for others . . . The Lord compensates the faithful for every loss. That which is taken away from those who love the Lord will be added unto them in His own way. While it may not come at the time we desire, the faithful will know that every tear today will eventually be returned a hundredfold with tears of rejoicing and gratitude." - Joseph B. Wirthlin, "Come What May, And Love It"

I was standing in a check-out line at Walmart with a cart full of groceries gearing up for a trip to Bear Lake on the afternoon of June 1, 2010 when I got a phone call from my husband stating that our Pediatrician was certain that our precious 23 month old had leukemia and we were to go directly to Primary Children's Medical Center in Salt Lake City, Utah.  I didn't even know what leukemia was.  I hung up the phone and wished that I could disappear and turn back time.  You can read about that experience HERE.  There are so many painful emotions that come from those first few days.  I still don't want to think about it. 

The next day, after many tests and waiting, we found out that Erin had Acute Myeloid Leukemia.  Did you know that there are different types of leukemia?  I didn't.  I had a lot of questions, but we didn't have time for answers.  Things went so fast that the surgery techs arrived in our room to take Erin to surgery to place a broviac central line (picture of that HERE) in her chest before we even found out what kind of leukemia she had.  The surgery people left, we talked to an Oncologist and he gave us the grim news that Erin had a tougher more resistant hard to cure type of leukemia.  Erin was then whisked down to surgery, sedated to limpness in our arms, taken away, and we were left in the busy hallway bawling with broken hearts.

Erin's treatments consisted of five intense rounds of chemotherapy that wiped her immune system to zero for 79 days.  Because her immune system was non-existent we were told that AML treatments lasted 6 or more months and all her treatment would be done while she lived in the Immunocompromised Unit of Primary Children's.  Overall, she endured intense nausea, multiple red blood and platelet transfusions, dangerously high fevers, diarrhea, bacterial infections, a cellulitis sore that turned into chronic inflammation and scar tissue, rashes, biopsy's, nodes on her lungs, echo-cardiograms, CT scans, bone marrow aspirates, lumbar punctures, MRIs, and multiple central line repairs. 

She survived 146 days and nights spent in isolation at Primary Children's Medical Center over a period of 7 1/2 months. 

You can read about Round #1 HERE. About when her hair started to fall out HERE. About celebrating her 2nd birthday in the hospital HERE.  You can read about some of the blessings we felt at the beginning of our experience HERE and you can see pictures of her first time outside after spending 29 days couped up in a room at the hospital HERE.

You can read about Round #2 HERE as well as a little adventure on getting to this round HERE.  You can read about two ships passing in the night HERE.  You can read about the Ronald McDonald House HERE. You can read about the many emotions cancer brought me HERE.

You can read about Round #3 HERE.  Erin's hospital bills have totaled nearly a million dollars and you can read about the importance of insurance HERE.  You can read about a special anniversary surprise that was such a wonderful gift from so many people HERE and see some sweet pictures of Erin playing in the hospital HERE.  You can read about Erin's simple faith and her prayer before going to bed HERE.  You can read about Medications and working her medication pumps 16 times a day as we took care of Erin while she was home HERE.

You can read about Round #4 HERE and HERE.  You can see a video I put together about our Leukemia Society Light the Night Experience HERE.  You can read about what ANC means HERE.

You can read about Round #5 HERE and HERE as it was a two-part round.  You can see a video on her last chemo day HERE.  You can read a post on a special experience we had on dealing with the knowledge that 50% of kids with AML will relapse HERE.  You can read about giving blood and the miracle of bone marrow HERE and HERE.  You can read about our surprise tree at the Festival of Trees HERE and when they delivered the tree to our home HERE.

You can see a video of Erin ringing the bell signaling the end of her cancer treatment HERE.  You can see a sum up of all the procedures and pharmaceuticals Erin endured HERE.  You can read about our very last night in the hospital HERE.  You can see a video of me flushing her central line the last time HERE and pictures of her getting her tube-ees out HERE.

You can see a complete sum-up video of Erin's cancer story HERE.

You can read about Erin's Make-A-Wish experiences HERE and HERE.

Thank you so much for checking in on us and reading about our experiences.  We have truly felt blessed throughout this trial.  We are grateful to the many people who helped us survive and we are extremely thankful for our Savior and his love that got us through the darkest of times.

7 comments:

  1. Hi there im from the uk and I am just reading your blog on your brave little girl as I am sitting in hospital beside my 14 month old who was diagnosed with Aml m7 also about 4 weeks ago now and we have not left hospital since he has had his induction phase first lot of chemo 11 days long whilst in paediatric intensive care on a breathing tube he is awake again now and went through alot im just so in shock and in pain having to watch my son go through this is killing me and it hasnt started well all I know is that he has alot of other issues and getting through them alone is hard enough let alome knowing whether the chemo has worked I know aml is so so rare in childhood and dont no anyone who has it so it was so nice to read your story and give me some hope I am 7 months pregnant aswell so this really has been the hardest month in my life and me and my husband are finding it so hard to cope with the thought of losing our precious perfect little boy I will carry on reading your blog but im sure each child has different complications but hopefully I can relate to some of what you and Erin went through x

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    1. hi im Jek from manila philippines, my niece was also diagnosed with AML, he is 1yr old boy, he was not alllowed to undergo a chemotherapy coz there is a posibilty he can not withstand the pain during this session, reading this blog of Erin makes me more hopefull that my niece will be touched by Almighty Father God for his fast miracle healing. Let us pray for both of our little angels. To God nothing is impossible. God bless

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  2. I am so glad that you were able to find my blog. I hope that it gives you hope, strength, and courage to keep fighting through AML with your son. In the USA we can bank our newborn baby cord blood and save it as a possible stem cell transplant for our cancer child. We do it through www.viacord.com, definitely worth looking into since you are 7 months pregnant.

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  3. It does definitely give me hope as not many people share this terrible experience in such a detail but im so interested to know how other people dealt with this and the outcome so makes me so happy to read your story. Yes I am trying to go through the process of getting my hospital to save my babies cord blood but I also an worried whether it will be a match but hopefully it wont come to him needing a transplant did erin need one?

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    1. Erin did not have a bone marrow transplant. Her two other siblings were not a match. We have had 1 other baby since her cancer and banked her cord blood and I'm due again with our 5th child and we're planning on banking her cord blood too. Hopefully out of 5 kids we'll have a match, it just makes me feel safe.

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    2. My 7 month old is aml m7 chemo only protocol. Would you be able to email me at rbabykakes04@aol.com I would love to chat with you as I have yet to find another aml m7 chemo only survivor :(

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