We Need Your Help!

We need your HELP!!!

I am calling all Little Air Bear supporters. Please come be part of the CURE for childhood cancer. If you have been touched by Erin and her cancer buddies, if you have learned from their strength and courage, if you have read this blog and wondered how you can help...this is your chance!

These kids didn't ask to get cancer and they certainly don't deserve all the pain and suffering that goes along with it. They are too young to speak for themselves. We need to be their advocates, and their voices. We may not be able to take away their pain, but together we can help them to have the chance at a better life and better cure.

Here's what you need to do...

There are many ways you can help our family make this fundraiser a HUGE success.

#1- Join Team Little Air Bear. Come walk with us on July 9th 2011 at 9AM for the CureSearch walk. It will be held at Liberty Park in Salt Lake City, Utah. It is only $10 to walk and show your support.  CLICK HERE to go to Erin's Little Air Bear Team page and sign up TODAY! Select Register and then register for Team Erin.

#2- You don't live close enough to do the walk?  No problem. Become a virtual walker on Team Little Air Bear. Many of you wont be able to physically come and walk with us that day. Thats OK! You can sign up to be a virtual walker and still be a part of our team. CLICK HERE to register to be a virtual walker on our team! Select Register, then make sure you select the "virtual walker" option.

#3- Donate to Team Little Air Bear. You can donate ANY amount, remember it ALL goes to finding a CURE for the kids. CLICK HERE to donate.

#4- Get your company involved. We are looking for corporate sponsorship. If your company is interested in raising money for CureSearch, if they do a dollar match program, if they want to support and advertise plus get a nice tax write-off please contact me at johnjillhuz@yahoo.com

#5- Volunteer. You can host a bake/garage/lemonade sale and then donate your proceeds to Team Little Air Bear.

#6- Most importantly...Tell EVERYONE you know. Please link this BLOG POST to your facebook, blog and twitter. Tell your family and friends to participate. People can sign up/donate to be on Erin's team, create their own team, or donate to CureSearch in general.

Not only will you be helping these kids, it is going to be a BLAST! We have live entertainment, activities for the kids, lots of great food, and plenty of good company. It is sure to be a day the entire family will want to make a tradition year after year. We cant wait to see you there!

What to know why
I'm so passionate about CureSearch?

CureSearch funds the Children's Oncology Group (or COG), the world's largest children's cancer research collaborative. Primary Children's Medical Center is a COG hospital (meaning that some of the Oncology staff and Doctors participate in childhood cancer research).

We have participated firsthand in research done by the COG. When Erin was diagnosed with Acute Myeloid Leukemia, she was enrolled in a research study for a new chemotherapy drug for AML treatment. CureSearch gave money to researchers who worked DIRECTLY with my own child! This special group of medical professionals are trying to find better treatment plans for our kids, less side effects, and ultimately a CURE to childhood cancer.

Many cancer foundations only donate 72% - 75%* of their proceeds towards cancer research and give a VERY SMALL** amount of their donations to CHILDHOOD cancer research.

CureSearch gives 95% of donations to cancer research!
100% of that goes to
CHILDHOOD CANCER RESEARCH!
This is why we feel CureSearch is the best choice for us.

Read about CureSearch's financial responsiblity HERE
*The Leukemia and Lymphoma Society gives 75% towards cancer research but less than 4% towards childhood cancer. The American Cancer Society (Relay for Life) gives 72%  of donations to cancer research but only 3% of that goes to childhood cancer research.

Thank you for your support!

We are honored to have such wonderful friends and family surrounding us.

tags: "acute myeloid leukemia"

What to do with the hair?

It seems strange that the biggest thing on my mind since cancer (acute myeloid leukemia) took over our lives is what to do with Erin's hair now that it's really starting to grow.  I'm not a hair stylist and I have no clue if I should let it continue growing in in it's mammoth way or if it should get trimmed up.  What do you think?

My Little Nurse

Today I went to our clinic to get a booster vaccination.  I assured my kiddos that they wouldn't have to get a shot, just I would.  When we got there, Erin pulled me aside and very gently told me that she would hold my hand when I got my shot.  My heart was so touched by her thoughtfulness.  My name was called and Erin stuck close to my side while my other two kids obliviously played with toys in the office playroom.  I sat down to get the shot and Erin held onto my hand and said that I was strong and brave and she told me that mommies don't cry when they get shots.  As soon as the shot was over she very kindly looked at the nurse and said, "may I have a sucker?"  Ha ha!  I'm sure that Erin really knows how much shots and pokes hurt, but I wonder if part of her kindness was also after that sucker.  Whelp, she knows more about medical stuff than any other normal kid and it touched my heart that she wanted to comfort me when she knew that I would hurt a little from the shot.

5 month clinic

I started the day with my usual nervous feelings as Erin and I made the drive to Primary Children's Medical Center.  That drive is all to familiar, but it is also so much like going to visit an old friend.  We had only been in the building for 5 minutes when we ran into two of our cancer fighting friends Brinely and Ellie.  We are part of the greatest support group of moms who have kids with cancer.  Seriously, I couldn't do this without them!

Erin ran into the lab to get her blood drawn.  She will forever amaze me.  How many 2 year olds run in a lab (knowing they are going to get stuck with a needle) right up to the chair, jump in and exclaim, "I'm going to sit here alone."  In the end, she did let me sit in the chair with her on my lap, but she was so brave the whole time.  As the nurse was getting ready to insert the needle into the top of Erin's hand my little Erin said, "I am brave and strong."  Yes, Erin.  YOU ARE BRAVE AND STRONG!

Sitting in the chair "all by herself"

We made our way up to the fourth floor to the Hematology/Oncology Clinic.  I was surprised to see so many other patients there.  It is a place of reality.  Every kid in there has some type of cancer.

Erin was really crabby at this point.  She decided that she needed to throw a tantrum on the floor because, in her words, "I NEED A ROOT BEER!"  Is she trained or what?  She thinks hospital=root beer.  I should have taken a picture of this.

She did calm down a bit to do a craft while we waited.

This video will show you just how accustomed she is to the whole clinic routine.  She could do it with her eyes shut.  I think she is actually bored while waiting to get her blood pressure taken.  She has come a ... long ... way.

We had a great visit with Dr. Verma (pictured with Erin) and Dr. Fluchel, Erin's Oncologists.  Erin's blood work looks good (see below) and she is still in remission!

Showing Dr. Verma how to listen to her heart.

Labs from 5 Month Clinic

White Blood Count 4.4 (normal 6.0-17.0)

Hematocrit 39.0 (normal 34.0-40.0)

Platelets 216 (normal 150-400)

ANC 2300 (normal 1500-8500)

Previous Labs from 4 Month Clinic

White Blood Count 5.3

Hematocrit 41.8

Platelets 215

ANC 2700

I always feel such strong emotions on the days that I take Erin back to the hospital.  Today was a particularly hard day because it was also the day of Tanner's viewing and my emotions have been so tender.  When we entered the room where Tanner's casket was and where his amazing parents were standing, there was the most wonderful feeling of love and peace in that room.  We happened to be in line to witness a very special sacred moment when two mothers, who just 6 weeks apart had lost both of their teenagers to AML embraced in the most loving, close, understand hug I've ever seen.  Time stopped as these two women, who both knew exactly how it felt, comforted each other. 

 

I just kept thinking all night that there is a "time" for everything.  A time to mourn, a time to be happy, a time to love, a time to be loved, a time to give and a time to receive.  A time to be diagnosed with cancer.  A time to be done with cancer.  We are all in differing stages of "times".

 

I came home to a clean house and the kids tucked into their beds (we have THE BEST babysitters).  The kids were all awake reading books in their beds.  I had to hold each one for much longer than usual as I kissed them good night.  I feel so much love for my children and I cannot begin to understand how it would feel to lose one of them.

A Blessed Little Girl

As I was working on the computer today my little air bear climbed up to my lap and we found ourselves checking out her blog.  Erin loves to see the pictures of herself on the top and side of this blog.  She wanted to see more pictures of herself, so I opened up this VIDEO that I made when she finished her treatments.  I have to admit that I have rarely watched this video since I made it because it brings back so many raw emotions of what we went through.

Erin and I watched it together two times because she said she wanted to see the picture of her and Princess Belle again. She laughed when she saw herself riding in the little tykes car and when she was dancing around her hospital room.  She got very worried when she had to get the shot at the end of the video.  She cheered and said, "they all gave me five" when she rang the bell.  She showed me her scar on her chest and said that she didn't have any tube-ees anymore and that her hair is "growing up."

I cried and snuggled Erin as we watched the video.  I am so in love with this little girl and all that we have been through together.  She has such a kind hart and she still prays every night for her friends in the hospital.  I am in awe of her strength and her ability to resume normal life after such a life changing event.

Last night I found a copy of Erin's baby blessing that was given to her when she was only 17 days old.  There is one part that jumped out at me and I think that even at her young age she is already fulfilling it.  She was blessed to live her life as an example of our Savior's love.  She was blessed with health and strength to go about doing good, and doing the Lord's work of bringing herself and others to the Savior and to Heavenly Father.  She is one special little girl.

Tags: "Acute Myeloid Leukemia"

A Tribute to Tanner

Tanner Smith, age 19, passed away Saturday night after a courageous fight with Acute Myeloid Leukemia.  My heart has been so heavy from this news.  Last December I first met Kristi, Tanner's mother, in a parent craft hour at Primary Children's Medical Center.  We were the only people who showed up and it only took a few minutes to figure out that we were both from Cache Valley.  It was peace to my soul to meet another mom from our valley and it was a great comfort to be her friend. 

I have been greatly impressed with Tanner's parents, Kristi and Robert, who have been such strong examples for me.  Every time I have been in their presence I have felt their devotion to their Savior and their devotion to their family.  They have been through a lot with Tanner's cancer and I know that they will be greatly blessed through these difficulties.  Even through all that the Smith's have been through this weekend, Robert took the time to call me tonight and share some tender thoughts and moments his family had with Tanner.  I will forever be grateful for the friendships and the support group we have around us. Please continue to pray for the Smith family as they continue to heal.

Leukemia - the Good and the Bad

Cancer has brought us many blessings, it has also brought us much sorrow.  One cannot experience the good without knowing the bad.  We are so grateful that our little Erin is doing so wonderful.  She is happy, strong, and enjoying life.  Sometimes it is hard to believe that she is 4 1/2 months off of treatment.  She has her 5 month check-up this coming Thursday.  Every day one of the kids asks about our upcoming Make-a-Wish trip to Disneyworld.  We feel overwhelmingly blessed in so many areas.

In the beginning of Erin's cancer we didn't know anyone, but now as we reach our one year mark I cannot help but think about all the new dear friendships we have made.  We have supported one another and rejoiced and cried together. Our hearts always feel heavy as we learn about others who are just starting into this rough life with cancer.  Some of our friends are still inpatient, some are just starting, some are finished, and some have angel children living in heaven waiting to be reunited with them. 

Cancer was hard and the thoughts of loosing Erin still linger in the back of my mind.  But, this life is not the end.  When we die, we go on to a much greater and beautiful existence and we continue to live, for eternity.  This life is such a small, yet vitally important part, of the whole grand scheme, a stepping point to a much greater existence.  I wish everyone in this world understood the importance of this life and the importance of the choices we make. 

When Erin was first diagnosed, our Stake President came to visit us and he said some things that have remained etched in my heart.  He told us that it would be hard to have a child die, but it would be even worse to have a child suffer spiritual death. 

The Family is the central part to God's plan and I am so thankful to be married to John.  Yesterday my younger sister, Annie, was married in the Logan Temple.  It was a beautiful ceremony performed by my father's cousin, Elder Christofferson.  She and her fiance were sealed together for eternity; not death do you part, but to be married and be together forever, even after death..

Every day I am continually reminded about how important life is.  A few times a week I check up on the blogs of my cancer friends.  I cry when I hear bad news and I cheer when I hear successes.  We will always remember Kim Nelson who passed away 6 weeks ago from relapsed AML. We have had ALLeukemia Friends who have just finished 2 1/2 years of treatments, that is such a long time to deal with Leukemia.  Our friend Rachel who was diagnosed the same time as Erin, but received a bone marrow transplant, just got her "tube-ees" out and is gearing up to be the student body secretary at her High School this next school year.  Aubree, almost 1 year old, recently had a bone marrow transplant from her brother, but she is back inpatient suffering from some serious sicknesses and hasn't eaten for a very long time, she is on over 15 oral medications right now.  Little Andrew just finished his last of 5 rounds of chemo and will be getting to ring the bell soon.  And just today, I read that our friend from Logan, Tanner, has received some really hard news.  He is suffering from 3 very serious issues (pancreatitis, typhlitis, and third space - where his plasma is leaking out of his vascular system into his chest cavity).  He has also found out that his body has become immune to the chemo and that he has too many cancer cells and is unable to get a bone marrow transplant.  This is such hard news for his family and we hope that he and his family can receive some peace and strength from this challenge.  When you find yourself on your knees talking to your Father in Heaven please remember these kids and their families in your prayers.

Tags: "Acute Myeloid Leukemia"

No More Leukemia: First Piano Recital

It's so hard to believe that nearly a year ago Erin was so sick in the hospital with acute myeloid leukemia.  Now, she is a regular little girl doing regular little girl things.  In the midst of the cancer turmoil I could never imagine what life would be like after cancer.  It's so wonderful to be done.  We feel so blessed and so grateful.

I hope you enjoy the video below of Erin's first piano recital.  I am a piano teacher, my children get the opportunities to perform regularly at the beginning of each of my student recitals.  Erin performed "hot cross buns."  She seems to think though, that she is smarter than her mother and she would never let me practice it with her.  She has the end all backwards (because her older sister taught it to her that way), but I think that overall she pulls off a fabulous performance for a two year old.

Tags: "Acute Myeloid Leukemia"