36 Month Clinic - 3 YEARS in remission!!

Erin (and the rest of us) have made it three years.  THREE years!  Yay!  We are so happy.  It feels so good to have gotten to this point.

So a few months ago all our kids got flu shots at our local clinic.  Our 7 year old son has a particular fear of needles and screamed (like so so so loud!) and thrashed throughout the entire clinic while me (super pregnant) tried to hold him down with the help of a nice grandma-aged nurse.  The nurses were so upset with him, like super upset.  They gave me that look that said, "you are a bad parent."  Then we left and the 20 people in the waiting area all gave me looks of disgust that our son had scared their kids and now no kids in the clinic wanted to get shots.  So due to that lovely display from my son I had a good talkin'-to to all the kids on the drive home.

Did I mention that we have 5 kids now?  I know this blog is nearly all for Erin's-cancer-related-things but our family is also a big part of who Erin is now.  Here they are down below, aren't they cute?  We banked the cord blood for our two youngest little girls in the event that Erin would ever need a sibling match for a bone marrow transplant.

Today my Little Air Bear decided that she was not going to cry during her blood draw like her brother had.  (Thank you!)  She went in like a champ and had a few tears and a few little sad cries, but I did NOT have to hold her down this time.  After 3 years of awful blood draws she is finally getting the hang of it.

Erin is doing so well.  No complaints here.  She has another appointment next June for an ECHO on her heart and a blood draw.  But after that we will only have to visit her Oncologists ONCE A YEAR!

Dr. Verma had a good chat with Erin and Erin responds funny and silly because she hardly remembers anything cancer related.  Dr. Verma said that now that Erin has reached 3 years it is very unlikely that her original cancer will return.  Super happy dance from me!  Erin did have some serious chemotherapies and the Daunorubicin can cause heart failure many months or years after the chemo was stopped so that is why we are having the yearly ECHOs.  The Etoposide that she had has a 3-4% chance of causing a secondary cancer.  Then there's the future possibility of infertility, endocrine problems, learning problems, and emotional issues.

It is a relief to know that she is pretty far out of the risk zone of being one of the 50% of kids with AML who relapse.  Now she only has a 3-4% chance of getting a secondary cancer from her chemo.  That's something to celebrate

Looking at Erin you wouldn't even know that she had cancer.  

She is truly a miracle!

She is proud that she beat cancer!

Labs from 36 Month Clinic

White Blood Count 7.6 (normal 6.0-10.0)

Hematocrit 40.1 (normal 34.0-40.0)

Platelets 238 (normal 150-400)

ANC 2800 (normal 1500-8500)

Previous Labs from 30 Month Clinic

White Blood Count 8.6

Hematocrit 39.4

Platelets 400

ANC 4600

Honoring Brielle!

It's that time of year again ... our CureSearch Walk.

Last year we raised $6442 in honor of Little Air Bear!

This year our family has chosen to honor our dear friend Brielle Beus 

for our CureSearch fundraising.

DONATE HERE!!! to Angel Brielle's Team

Brielle and Erin both fought Acute Myeloid Leukemia and were diagnosed around the same time.

They enjoyed walking in the CureSearch 2011 walk together!!

Brielle fought AML a few times and underwent 2 bone marrow transplants.  

She passed away August 10th, 2013.  

She has the most beautiful smile!!

We miss Brielle and her smile so much. 
You can read her beautifully written obituary HERE.

100% of your donation will go to Childhood Cancer Research!!!!

DONATE HERE!!!

This year our family won't be able to physically attend the SLC CureSearch Walk, but we are still fundraising and hope to raise $2000 by October 5th.

30 Month Clinic

Erin's doing great!  Today we had a blood draw and an ECHO in Cardiology.  I'm sure Erin could be heard screaming during her blood draw.  She was in hysterics.  Each blood draw we do brings more and more tears.  It must be that as she's growing older she understands more about the pain and how much she HATE being poked.  The ECHO was a breeze and she was completely relaxed and watched Super Why while she laid there.  The ECHO results came back completely normal and her CBC came back normal!  Yay!  Here's to 2 1/2 years in remission for Acute Myeloid Leukemia.  

Take that cancer!

We got to the Oncology Clinic and she got started right away on making a Butterfly Mask.

She is a pro at the blood pressure cuff.

Then we got the usual Root Beer and Chocolate Pudding.  Chips have been outlawed in the clinic, so there was a little disappointment that she couldn't have the regular Cheetos too.

We finished the morning off with a family trip to Lagoon.  

Labs from 30 Month Clinic

White Blood Count 8.6 (normal 6.0-17.0)

Hematocrit 39.4 (normal 34.0-40.0)

Platelets 400 (normal 150-400)

ANC 4600 (normal 1500-8500)

Labs from 24 Month Clinic

White Blood Count 8.4

Hematocrit 39.3 

Platelets 250 

ANC 4000 

Labs from 21 Month Clinic

White Blood Count 8.

Hematocrit 40.4

Platelets 273

ANC 2900

Previous Labs from 18 Month Clinic

White Blood Count 8.6

Hematocrit 43.6

Platelets 311

ANC 3660

Previous Labs from 15 Month Clinic

White Blood Count 9.2

Hematocrit 43.6

Platelets 317

ANC 4200

Seeing Beautiful

There was a time when I saw cancer

There was a time when I saw sickness

There was a time when I felt heartache

There was a time when I felt despair

Now I see beautiful

I see health

I see life

Thank you to all of you who have happened upon this blog today.

I hope you find hope and feel God's love as you read through my posts about Little Air Bear's cancer story.  Thank you for leaving comments about your own children who have fought or are still fighting cancer.  God will support you through you trials your troubles and your afflictions.

24 Month Clinic - TWO YEARS!

  TWO YEARS IN REMISSION!!!

Erin has made it two whole years in remission from her Acute Myeloid Leukemia.  I am thrilled.  Once we hit 5 years the chances of her relapsing are just about nil.  The further we get from diagnosis the better her chances of never relapsing.

Erin survived getting her blood drawn in the lab. She did so much better when she was 2 years old, now it's like she knows the reality of how much she dislikes being poked.

THE GOOD NEWS IS . . . . . 

We got the okay to only have blood test twice a year!

It's too bad you couldn't just see me doing a jig!

So now we only go back two times a year instead of four times.

Erin getting her height taken.  She is wearing the mask because she had a cold she was fighting and we didn't want to get any of the other kids in the Hem/Onc clinic sick.

Getting her blood pressure taken.

 

 For like two years you've been seeing me post about her snacks, but SERIOUSLY, this is just about the ONLY thing Erin remembers about being in the hospital . . . eating Cheetos and drinking root beer.  I think it's pretty cool she doesn't remember all the awful things.

Here's the Not-So-Good-News . . . 

Erin is small.  Like super small for her age.  From December 2011 to December 2012 she gained exactly 1.12 pounds and only grew 2.01 inches!  This has everyone worried.  Erin weighs 11 pounds less than the average girl her age.  We were ordered to go to radiation to get an x-ray of her wrist to check if her bone growth is normal.  Here she is getting the "picture" of her hand taken.  She totally doesn't mind x-rays which is cool for us!

 Welp, her bone growth is spot on.  I was thankful for that since I didn't really want to have to go down the endocrinology avenues of hormone therapy.  But, we're all a little stumped about her body size.  We don't really have a plan either, just lots of hope that she'll keep on growing.  Maybe she'll continue to grow and that she'll keep on growing into her late teen years and catch up to everyone or maybe surpass us all and be 6 feet tall (or taller) like some of her girl cousins and aunts.

We also apparently missed getting her yearly ECHO on her heart, just a little mix-up in Oncology.  One of her chemos can cause severe heart damage so they monitor her heart every year.  We're not too worried about her heart right now since all her past ECHOs have come out great so we're just going to do it in June when we go back again.

Things are going great here and Erin is happy!  Her blood work from the last CBC is listed below and it all looks wonderful.  Something kind of cool is that we moved into an area where another little cancer survivor girl just lives down the street.  She had AML M7 just like Erin and was 2 years old when she was diagnosed.  I actually met her and her father at PCMC when we were both inpatient with our kiddos.  Small world!!

Labs from 24 Month Clinic

White Blood Count 8.4 (normal 6.0-17.0)

Hematocrit 39.3 (normal 34.0-40.0)

Platelets 250 (normal 150-400)

ANC 4000 (normal 1500-8500)

Labs from 21 Month Clinic

White Blood Count 8.

Hematocrit 40.4

Platelets 273

ANC 2900

Previous Labs from 18 Month Clinic

White Blood Count 8.6

Hematocrit 43.6

Platelets 311

ANC 3660

Previous Labs from 15 Month Clinic

White Blood Count 9.2

Hematocrit 43.6

Platelets 317

ANC 4200