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.

Sunday, January 30, 2011

Pictures, Cookies, and Potty Training

I have hardly baked for well over 7 months.  Some of our past family traditions have included baking sugar cookies at Halloween and Christmas and taking them around to our neighbors.  But, with Erin's cancer, that never happened.  The kids have been begging me (for months now) to please, please, please make cookies.  Well, we finally did.  We all wore our aprons and took turns rolling and cutting out sugar cookies. 

Erin had a blast. 

Erin has also been very interested in potty training.
She has been ready for quite some time, but with all the chemo and hospital and then the holidays we just felt it was much easier to have her in diapers.  When she was in the hospital, they monitored her pee output day and night.  During chemo, they changed her every 2 hours.  It would not have been cool to make her get out of bed and pee in the middle of the night, every 2 hours.  So, now she's finally getting to be a big girl on the potty.

In this picture she says, "YAY, I did it!"
(Oh, and we just love the $4 potty from IKEA.)

We are SO GRATEFUL for life!

Friday, January 21, 2011

Preschool & 1 Month Clinic

Little Air Bear started Preschool today! 
She was thrilled and we were so happy to have her to get the opportunity to attend.  It is so wonderful to have her get out and enjoy real life like every other 2 year old should.  No kid should have to be confined to a hospital room!

Cecily and Caleb were super excited for Erin too.


Erin had her 1 Month Clinic visit.
She goes to the Hematology/Oncology Clinic at Primary Children's once a month to have her blood work checked and to see how she's growing.  She screamed so loudly when the nurse drew blood from the top of her hand.  I tried to explain to her what would happen, but all she kept saying was "no more tube-ees."  I would say, "yes, you don't have any more tube-ees, so the nurse is going to stick your arm with a needle."  She got this silly little giraffe as a prize for enduring the blood draw.

Look at all that hair!
And yes, it is BROWN.
Guess she's not a blondie anymore.

We went to ICS to visit some AML friends.  We first stopped to see little Andrew who was finishing his second round of Chemotherapy.  He was so happy to have some company, he was excitedly attacking his window when we came by. 

Then we saw 10 year old Brielle who received a bone marrow transplant from her little sister earlier in this month.  She was so sick with mouth sores, but it really made my day when Brielle gave Erin one of her HUGE light-up-her-whole-face-smiles.  Brielle has the most beautiful smile.

Finally, we stopped to see Aubree (pictured below with Erin) who is almost 8 months old.  She is just starting round 3 of chemo and will be having a bone marrow transplant next round. 

In the elevator I ran into a familiar face, the grandfather of a patient we knew who finished his AML treatments when we were just starting.  Unfortunately, the 13 year old grandson's AML came back 6 months after he finished his treatments.  They found out that it came back right before Christmas.  He is back on chemotherapy and will be having a bone marrow transplant.  It is so sad for us to hear stories like this.

It was bittersweet to stop by ICS.  I am so thankful to not be living there anymore. I am so thankful that Erin is through with all those treatments and everything, everything, everything that came with it.  I would never wish to go back and stay in one of those rooms again.  Near the end of my visits I just wanted to sob.  I was reminded of the feelings of being back there and it was hard to see so many of my dear friends and what they are going through.  Cancer is so hard, it's hard on the child, but it is also hard on the family in so many ways.  I wish I could fix everything and wish away all the heartache and problems that come with having a child with cancer.  I wish there was a cure.  A real cure.  I believe there is one out there.

I am so grateful for my blessings and for this beautiful life that I am able to live.  I am so grateful for my family and the closeness that we've developed through this trial.  John and I are closer than ever.  I am so grateful to have a most generous, kind, loving best friend to spend the rest of my life with.

Lab Results for Erin's 1 month clinic
White Blood Count 5.3 (normal 6.0-17.0)
Hematocrit 37.9 (normal 34.0-40.0)
Platelets 218 (normal 150-400)
ANC 2900 (normal 1500-8500)

Everything is coming up nicely, her WBC is a little low,
but that will come up.
Here are her labs from last month.

Previous Labs from 12/23
White Blood Count 2.8
Hematocrit 32.1
Platelets 274
ANC 1200

Tuesday, January 18, 2011

Cookie Monster

Cookie Monster.

Our family friend, Audrey Wilmore, made this adorable cookie monster hat.  Erin was pretty scared of it for awhile, but just recently she has found a love for it and keeps asking me where Elmo is?  

Erin is really changing SO MUCH!  I cannot believe what a different child she is now that she is so healthy and living a normal life.  Sometimes I feel like we missed 1/2 of her 2 year old year.  She was so sick and living in a hospital room and her true personality was not able to shine.  It has been sad to see her grow up so much so quickly.  It's like she went from a toddler to a little girl in just the last month.  She is showing her independence more and really enjoying being around Cecily and Caleb.  This morning Caleb taught her how to play soccer and it just made me so happy to see our kids playing together. 

Thursday afternoon I will be taking Erin to Primary Children's Medical Center for her 1 month check-up.  She will have monthly blood tests for the next year.  We will always be praying that her Leukemia stays in remission.  Thank you for your prayers and all of the encouraging and thoughtful comments.

Monday, January 17, 2011

Video of Erin's Cancer Story

I am finally finished with a video I made that sums up Erin's cancer story.

Making this video was emotional for me as I looked back to what our family went through.  But, at the same time, it was also very soothing to my soul as I see the strength we received to overcome.

I am forever grateful for the whisperings of the spirit in May 2010 that told me that something was very wrong with Erin's little body.  These promptings led me to have Erin's blood tested.  She is such a strong little girl and she has overcome more than any two year ever should.  And, all through it, she kept a beautiful radiant smile on her face.

Saturday, January 15, 2011

What is AML?

It has taken me a long time to understand what AML is, and I still have much more to learn.  I thought I'd compile some of my thoughts about what I've learned.  So much of what I've studied doesn't make sense because I don't know what all of the scientific terms mean.  But, I've tried to understand what I feel is important and I thought I'd share some of it with you.  I hope that it makes sense to you and that it helps you understand more about AML.

AML stands for Acute Myeloid Leukemia.  Leukemia is a broad term for several types of blood or bone marrow cancers. Some Leukemias are: Acute Myeloid Leukemia (AML), Acute Lymphoblastic Leukemia (ALL), Cronic Lympoblastic Leukemia (CLL), Cronic Myeloid Leukemia (CML).  In acute leukemia, the cells grow very rapidly.  A single Leukemia cell can divide from 1 cell into 2 billion cells in roughly 16 days.

Erin had AML type M7.  There are 8 types of AML: M0 - M7.  M7 means that she had Megakaryocytic Leukemia.  Let me explain.  Please look at the chart below that I copied from my sister's high school Physiology book.  I guess high school was more useful than I thought.  Everything made so much more sense once I studied this chart.

Looking to the development of blood I first saw that a stem cell (the top blob that looks like a pink fried egg) will either divide into a myeloid stem cell (the left arrow) or a lymphoid stem cell (the right arrow).  In Erin's case, I looked at the myeloid stem cell (left arrow).  It then turns into a Megakaryblast (the biggest pink blob on the left side) which turns into a platelet (they look like jelly beans).

In Erin's case of AML, the stem cells in her bone marrow (specifically, the Megakaryoblasts) made many abnormal cancerous cells instead of platelets.  The cancer cells are called blasts because they look similar to normal immature blast cells.  Instead of becoming normal mature platelets, the cancerous cells divided rapidly and uncontrollably, they were unable to mature and work like normal blast cells, and they don't die easily. Eventually, these megakaryoblasts filled up Erin's bone marrow, preventing normal cells from being made.  Then, they built up in her bloodstream.  They can also invade the lymph nodes, brain, skin, liver, kidneys, and other organs.  Thankfully, we caught Erin's leukemia early enough on that it hadn't spread past her bone marrow and blood.

Her pale skin and her many bruises were what made us have Erin's blood work checked out in the first place.  The picture below is what a smear of her blood work might have looked like.  The purple blobs are the mixed up megakaryoblasts (cancer).

One third of children with AML type M7 have a chromosome translocation t(1;22)(p13;q13).  Another third are Down Syndrome and the last third are heterogeneous.  In looking even deeper into Erin's chromosomes, 10% of the cells counted in a chromosome analysis done on her bone marrow sample had this t(1;22)(p13;p13) translocation, the other 90% of the cells showed a normal female chromosome complement.  The translocation involved a fusion of the RBM15  and MKL1 genes.  Did you understand that?  Ha ha, neither did I.  To the 1% out there that understood that, please give yourself a pat on the back.
I wish I knew more about genetics, I really don't understand any of the translocation, but from what I was told, recent data showed that patients with this translocation respond well to intensive AML chemotherapy.  The most important thing to me was helping Erin fight AML.  And, if her genetics say that she'll respond well, that is good enough understanding for me.

Friday, January 7, 2011

No More Tube-ees!

Thursday night we took this picture.  Erin was happy, no BEYOND happy!  She was bouncing off the walls happy.  She knew that in the morning she would be getting her central line pulled out.  I told her that I would get her up when it was still dark (we left at 6:30 am) and drive her to the hospital where a Doctor (Surgeon) would take her tube-ees out.  I also reassured her that she wouldn't have to sleep at the hospital, but that when she was done, she could come home.  She woke up several times in the night.  It was almost like she couldn't sleep because she was so excited to get the tubes out.

I think she looks so grown up in this picture.

We arrived at 8:15 am and she got to play in the waiting room for awhile.  The twinkle in her eyes just shows how truly happy she really was.

All decked out in hospital attire.
Many people commented on how sweet HE is.
With her hair short and dressed in blue,
I guess SHE does look like a really cute HE.

On her way to the Operating Room.

The surgery was very simple.  The Surgeon pulled the tube out and put one little dissolvable stitch in.  It took about 30 minutes.  Erin woke up demanding a purple popsicle.  She was also upset about the pic line they had put in her arm to give her fluids while she was out.  I reassured her that they would take it out before we went home.

Dressed and ready to go home.

Erin requested a "birthday cake" as a treat for being all done.  We decided to celebrate a "birthday" for all of us.  The start of our cancer free lives!  We each put one candle in the cake and then we sang, "Happy Birthday" to our family.  Then we all blew the candles out together.

A wiggly, happy, tube-ee free Air Bear!
We will keep the bandage on her tube site until Sunday. 
Shortly after that she can bathe like a normal kid again.

I have had so many feelings throughout the day.  I am so thankful that Erin is cancer free.  I am thankful for all of the skilled Doctors and staff that have taken such amazing care of us.  I am thankful for the sweet comforting blessing of the spirit that I have felt throughout this whole awful process. 

While I waited in the post-operating waiting room I thought back to June 2nd, when John and I waited for Erin while they put her Central line in place.  We had found out literally 10 minutes before they placed the line that she had a severe, rare form of Leukemia.  I never want to experience those feelings again.  It was so much better being in the room the second time knowing that Erin is healthy. 

As I walked through the halls of Primary Children's today I was in awe that we had spent 6 1/2 months there.  It felt like a lifetime ago that we started into treatments.  My sense of time is still very out of whack.  I am still stuck in June and I still feel like next month is July.  Christmas was beautiful, but still a bit of a blur as the weight of what we've endured is still wearing off.  Maybe when next June comes I'll get back in sync. 

I am so thankful for Primary Children's Hospital, but I don't want to have a child admitted there ever again.  Living in a hospital is not cool.  I was so thankful to walk out of the doors with my child on my hip knowing that hopefully (hopefully, hopefully) she'll never be admitted back there again.

Of course, she has Clinic visits once a month, but in a few years she'll only have to go once a year.  There is (and probably always will be) a nagging feeling in the back of my mind that reminds me that any day the Cancer could start growing again (1/2 of the kids with AML relapse).  There are days when I don't really think about it and other days when it consumes all of my thoughts.  Sometimes I even look at my other two children and wonder if they are getting sick.  Not just a cold or flu sick, but REALLY sick.  Cancer sick.

My perspective on life is altered.  I have those "nagging cancer coming back feelings", but overall I am more calm, more at peace with who I am and what I can endure.  I can hardly believe that cancer has taught me that.  I more completely understand that this life is a time to learn, grow, and progress spiritually.  It is a time to learn charity - true charity - the pure love of Christ. 

Some might say, "but Erin is so little, so innocent, so pure. 
She did nothing wrong. 
Why did she have to suffer?" 

Well, bad things happen. 
That is part of life. 
If we didn't understand the bad, we would never truly appreciate the good wholesome beautiful parts of life.  Our Savior suffered more than we can comprehend. Our suffering, even Erin's suffering, is nothing compared to the Savior's.  But, it has brought us closer to His love for us.  We are able to understand a little bit more about what He did for us.  He suffered and died so that we can be redeemed and be worthy to live in His presence some day.

I am so thankful for the spiritual blessings that our family has received.  We have seen miracles and been granted blessings from this trial that we couldn't have received any other way.

"Yea, though I walk
through the valley of the shadow of death,
I will fear no evil:
for thou [art] with me;
thy rod and thy staff they comfort me." 
(Psalm 23:4)

Thursday, January 6, 2011

A Prayer

Erin's prayer this evening,
in her words:

"Dear Heavenly Father, Jesus Christ. 
No more sick. 
No more tube-ees. 
No more hospital. 
In the name of Jesus Christ, Amen."

Central Line

This little Sleeping Beauty is getting her Broviac Central Line removed

Enjoy this quick video of a close-up on Erin's hair and one of
THE LAST times we have to deal with her "tube-ees."

Wednesday, January 5, 2011

Cancer Moms

Cancer Moms
I belong to a special group of women
My friends and I have an amazing bond.
We never wanted to be in this group,
Yet we are in, for life.

Maybe we have met, maybe we haven’t,
Yet our love for each other is boundless.
We know the pain the other one feels,
And we share our victories small or huge.

Words like chemo, IV, Zofran, bald heads
Are always parts of our conversations,
As well as roidrage, tears, and meltdowns…
We always know where the closest puke bucket is,
We can hold it in one hand and if necessary,
Swallow the sandwich the other hand was holding.

We can drive to the hospital,
Park in the dark parking garage
Make our way thru the halls of the hospital
And to the appropriate floor,
Settle in a room, turn the TV on,
Give instructions to the head nurse,
Silence loud beeping IV pumps,
Direct a wagon AND an IV pole
To the playroom without hitting anything
Make our way back to the correct room
And all this, mind you, With our eyes closed at any given time.

(Rachel and I - AML mothers)

We know how to draw blood from lines
Sticking out of little kids chests.
We can hold them down with one hand,
While a nasogastric tube is inserted in their little nose,
And be on the phone with their dads at the same time.

We can live for days on hospital food,
And on maybe only one meal a day.
We know the names of up to 20 different drugs,
Their purpose, dosage and time to be taken.
We are always on call, 24 hours a day,
Seven days a week.

(Lizzie and I - AML mothers)

We are used to not always looking our best,
Hard to do with only a few hours of sleep.
Make up, hair styling, skirts are words of the past.
We have become addicted to texting,
hospital, clinic, home, wherever…
We talk sometimes at all hours of the night,
We know we can count on someone to be up.

Then for one of us, the world stops.
She has to walk away, broken.
This job is over .
The job is over, but the fight is on.
Remember, I said we were in this forever.

(Marie and I - AML mothers)

We are friends, sisters, temporary nurses,
We are each others rock, each others punching bag,
We listen, we vent, we cry, we laugh together.
We share our lives and our deaths
We share our pain and our victories.
We are strong, but not by choice,
Sometimes we win, sometimes we lose,
But never are we defeated.

We are not nurses
We are not doctors,
We are cancer moms…

(author unknown)

Monday, January 3, 2011

The End of December

Just a little sum up of what Erin's been up to.

She met her newest cousin, Torin (Lisa Marie & Scott's baby)
Cecily, Caleb and Erin all had to hold him multiple times.

Erin received an envelope of cards and letters from a Seminary class in Orem.  We read each letter out loud and she enjoyed the pictures they drew.

Here she is on Christmas morning posing with her loot.  She wanted to open every present.  We had to explain over and over that some of the presents under the tree were for her brother and sister and not just for her.  It seems that in the last 7 months she's opened so many gifts that she thinks anything in wrapping paper is for her.

We spent New Years at Bear Lake.  It snowed so much, but miraculously all of the Swenson Family (minus my brother Brian who had to work) was able to make it.  We enjoyed our time playing together and taking turns being towed up the mountain since all the non-four-wheel drive vehicles couldn't make it.

Pictured below are the 14 Swenson grandkids.  12 of the grandkids are ages 5 and under.  There were 5 two year olds for Erin to play/fight with.  Erin is on the left end.  She had such a wonderful time playing and sleeping in the bunk bed room with everyone else.  She is enjoying being social and getting out SO MUCH!  She is so enthusiastic and so energetic.  We've really missed this side of Erin.

Cecily and Erin painting together.

Erin is Sleeping Beauty and Cecily is a ballerina.  They put on a show for me and danced together.  Look closely and you'll see some REAL HAIR on top of Erin's head.  It is coming in so thick and full.  It is even a little more brown than before. 

Here we are all together.
On to a New Year with

Erin came home from Bear Lake with a yucky runny nose.  It was a strange feeling being around so many people and not worrying about her ANC since it's only going up from here on out.  I don't even have a clue what it is since she only gets it tested once a month now.  It's kind of cool to see that she is again a normal kid with a runny nose.  Hopefully the runny nose won't hinder her Broviac Central Line removal.  Her paperwork was faxed from Oncology to the Surgical Department at Primary Children's and I'm just waiting for a call from Surgery to schedule her line removal.