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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.

Friday, December 31, 2010

The Emperor of all Maladies

I have been spending my lazy holiday break days with my family, snowed in on a mountainside overlooking Bear Lake.  I've spent much time pouring over a book my older brother (a surgeon) mailed to us, "The Emperor of all Maladies" by Siddhartha Mukherjee.  It is a riveting, well written biography of cancer.  Although I am only 1/5 of the way through this 500 page textbook/novel, I feel like sharing some of the many interesting things I have learned from my readings.  I am sure that as I continue through this book, there will be more interesting things posted on this blog.

"Illness is the night-side of life, a more onerous citizenship.  Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick.  Although we all prefer to use only the good passport, sooner or later each of us is obliged, at least for a spell, to identify ourselves as citizens of that other place." --Susan Sontag


"Those who have not been trained in chemistry or medicine may not realize how difficult the problem of cancer treatment really is.  It is almost - not quite, but almost - as hard as finding some agent that will dissolve away the left ear, say, and leave the right ear unharmed.  So slight is the difference between the cancer cell and its normal ancestor." --William Woglom

History
I have always been under the impression that cancer is a modern disease, but many paleopathologists have found cancers in mummified specimens.  Bone tumors, because they form hardened and calcified tissue, are vastly more likely to survive over centuries and are best preserved.

--Abdominal cancer found in a mummy in the Dakhleh Oasis in Egypt from about 400 AD.
--2000 year old Egyptian mummy in the Alexandrian catacombs with a tumor invading the pelvic bone.
--A jawbone dating from 4000 BC found in southeastern Africa carried the signs of a peculiar form of lymphoma. 
--440 BC Atossa, the queen of Persia, had a form of breast cancer.
--March 19, 1845 John Bennett described an unusual case where a patients blood was chock full of white blood cells.  He called it "a suppuration of blood" or in other words, the blood had apparently spoiled.  This is the earliest known case of Leukemia.

"Cancer, far from being a "modern" disease, is one of the oldest diseases ever seen in a human specimen - quite possibly the oldest." --Siddhartha Mukherjee

"Thus, for 3,000 years and more, this disease has been known to the medical profession.  And for 3,000 years and more, humanity has been knocking at the door of the medical profession for a "cure." --Fortune, March 1937

"Cancer's emergence in the world is the product of a double negative: it became common only when all other killers themselves (tuberculosis, dropsy, cholera, smallpox, leprosy, plague, or pneumonia) have been killed...civilization did not cause cancer, but by extending human life spans - civilization unveiled it...The capacity to detect cancer earlier and earlier, and to attribute deaths accurately to it, has also dramatically increased in the last century." --Siddhartha Mukherjee

"Why don't we try to conquer cancer by America's 200th birthday: What a holiday that would be!" --Advertisement published in the New York Times by the Laskerites.  December 1966


Terms
-In 400 BC karkinos, from the Greek word "crab" showed up in medical literature to describe a tumor with a clutch of swollen blood vessels around it.  It reminded Hippocrates of a crab dug in the sand with its legs spread in a circle.

-Onkos was the Greek term for a mass or a load, or more commonly a burden.  Cancer was imagined as a burden carried by the body.  Onkos occasionally was used to describe tumors, from which the discipline of oncology would take its modern name.

--Weisses Blut - white blood - was the first name for leukemia.  It is a literal description of the millions of white cells seen in the blood.

--1847, "leukemia" - from the Greek word leukos, meaning "white" became the official name for Leukemia.

Thursday, December 30, 2010

Final Results

I received a phone call from Dr. Verma today and she said that Erin's bone marrow aspirate results showed NO TRACES of Leukemia.  She also said that Erin's ECHO and EKG both looked normal. 

Erin will get her central line out next week.  She is really very excited about that!  She totally understands what is going on.  This morning she told me "no more eye drops, no more chemo!"  I reminded her that her tubes were coming out next week and she said, "no more tube-ees."

I just feel so blessed that we are at the end.  I am so thankful that Erin is getting back to normal.  Her hair is coming in full force.  Yesterday she said, "I found my hair.  It is so soft."  When her hair fell out, we used to say that she "lost" her hair.  Now, she is happy to have "found" it.

On to a Happy New Year!

Saturday, December 25, 2010

Christmas

"May you, wherever you may be across the world,
have a wonderful Christmas....
May even those whose hearts are heavy
rise with the healing
which comes alone
from Him
who comforts and reassures."
-Gordon B. Hinckley

The timing of Erin's cancer is such a blessing.  From the beginning, we knew that it was meant to happen at that very time.  We couldn't have picked a better time in our lives to start our fight against Leukemia.  And, we couldn't have picked a better time to have won the battle.


Our Christmastime
Being together.

Rejoicing in the birth of our Savior
Gratefulness for the tender mercies He granted us,

Understanding new emotions,
suffering the depths of anguish
praising the gentle peace.

Witnessing other's struggles
sharing the burdens with tears and embraces

Wishing
Hoping
Yearning
Praying

Feeling extreme love for our child
in awe that God loves her
even more
than we do.

Witnessing miracles

Being together.

We are so grateful for all that has been done for us. We had so many surprises on our doorstep this morning and the past few days too.  Thank you to all of the angels out there who have served us.  Thank you for making this Christmas a special one.  We are so grateful and overwhelmed by the generosity shown our family. 

Thank you. 
Merry Christmas!

Thursday, December 23, 2010

Last Big Clinic Day

Today Erin had a big day at Primary Children's.  We decided to make it a day in SLC with the whole family.  John took Cecily and Caleb to IKEA and the Living Planet Aquarium in Sandy while Erin and I were at the hospital

First off we went to the Oncology Clinic.
We met McKall and Chase, some of our ALL Leukemia friends
(too bad we didn't get a picture with McKall)


Erin looks so bored doing her blood pressure.
Just a few months ago the blood pressure was TORTURE,
now she barely notices. 


We found a HUGE surprise when we got to her Clinic room.
It totally brightened her clinic experience.
This blue stocking is taller than she is.
Her words when she opened the stocking up:
"Holy Moly!"
It was full of princess things, play dough, and Tinkerbell barbies.



We were so happy to see Dr. Verma and Dr. Barnette (not pictured). The Clinic was empty so we got to sit and chat with both Doctors for 45 minutes. We love them so much. They were very happy to see Erin.  They kept commenting on how well she did the last 6 1/2 months.  

Starting today we are pretty much done with everything.  She will get her central line taken out the first week of January.  Erin only has to take Septra (an anti-pneumonia medication) for 3 months.  She is off all of her other medications!  Yay!  She won't need to have anymore blood tests done at home to check her ANC.  We'll just do them once a month in the Oncology Clinic at Primary Children's for the next year.  It is such a weird feeling.  I am still so occupied with the thoughts of not letting her get sick or be around anyone sick, but her immune system is coming back.  It's strange to think that she won't be immunocompromised anymore.  I am adjusting to normal life again.  It is all so strange and wonderful.


Then we went down to R.T.U (Rapid Treatment Unit) for her Bone Marrow Aspirate.  She was giggly and played and played with the toys in her stocking. She was starving because they were doing anesthesia, but she was so happy and well behaved.


Sleeping little angel.


She woke up from the bone marrow aspirate happy as a lark and asking for the usual purple Popsicle. Dr. Verma looked at a sample of her bone marrow under a microscope and said it looked really good.  The marrow will be sent to the Primary Children's lab to be further examined and another sample will be sent to the Children's Oncology Group for even further in depth examination.  We should get results around the 29th.



Then we made our way to Cardiology for an ECHO and an EKG.

The ECHO (Echo cardiogram) is an ultrasound of her heart.  The Daunorubicin chemotherapy she took during treatments can harm her heart so they keep a close eye on her heart. 

The EKG (Electrocardiography) measures the electric activity of her heart.  They place 12 electrodes on her.  She HATES it.  She really HATES it. She kicked and screamed through the entire EKG.  It doesn't hurt, but she just hates all those stickers.


We got home to a roast we had put in the crock pot and we had a little pre-Christmas Eve celebration.  We ate dinner complete with Christmas crackers.  John and I both served missions in Great Britain (me in England and John in Scotland) and at Christmastime we pop open the crackers and wear the crown inside and there is always a little present hidden inside too.  Then we gave the kids a special present from Grandma Hughes.  She is such a talented seamstress. Can you believe she MADE these adorable pajamas?



Finally we opened a special present that a secret Santa had dropped at our house to open when we were all together. 


It was the cutest book called "Tickle Monster"
by Josie Bissett
It even came with tickle monster gloves.
Erin had to tickle everyone with them.


We are so grateful for the cards, letters, gifts, presents on our doorsteps, the 12 days of Christmas, the office elves, prayers, hugs, and phone calls.  We are so overwhelmed by all of the love that has been shown to our family. 

This year has come with some tremendous trials and some of the most cherished moments.  Thank you for helping us.  Thank you for checking on us.  Thank you for praying for us.  Thank you.

Monday, December 20, 2010

Erin's Counts

Two surprises today!

1. Erin's ANC is 1300!  Wow, it shot up!  She will be so happy to not have to wear her mask out in public. 

2. Make-A-Wish Foundation accepted Erin as a wish kid.

Pure Cuteness

No child should have to endure what Erin
and our other little cancer friends are going through.

Erin is a different child!
She is 100 times happier here at home with her family.
We are having so much fun being together.

Merry Christmas!




Erin, (2 1/2) Cecily (5), Caleb (4)


Thursday, December 16, 2010

Ringing the Bell

Ringing the Bell
Signaling the End of Cancer Treatment


Giving High Fives