5 Years in Remission!

I really thought that the magical 5 year mark would be more magical. It came and went and many times I thought about getting on here and sharing all about it. But, there are many feelings that suppressed my desire to share. 

First, I hardly think about Erin's cancer anymore. Five years ago, if you'd told me, "someday you won't even think about cancer anymore," I would not have believed you. It feels liberating to be free from the constant worry. Most days I feel pretty normal - like it never happened. But, then there are moments when the little scars on my heart and spirit surface and I begin to worry. Mostly, I worry about the late effects that loom over our heads, as I wonder what all that chemotherapy has done to her body and mind in the long run.

Second, I have so many friends I've met over the last 5 1/2 years that haven't been as fortunate to walk away from treatment with a healthy child. It feels very vulgar of me to constantly share my feelings of gratitude and health when others are struggling deeply with the loss of a loved one. 

For these two main reasons, I have kept silent. Tonight I was reminded why it is important for me to overcome my insecurities and continue to share this blessing from God, our hope in Him, and the beauty in our healthy daughter. I received an email tonight asking about our daughter from a parent who has looked all over the internet and only seen stories of sadness and loss. I did the exact thing when Erin was diagnosed. I'm sure most parents would do the same. You search and search for someone who has survived. There is a great need to know that someone else has succeeded and then you can place your faith in God knowing that your child can achieve that too. 

We live in an unbalanced world where the bad is broadcasted louder than the good. The good is out there, but oftentimes it is resting in the hearts of those who have experienced it.

Here is our lovely AML survivor. 

She is 8 years old now and growing into such an accomplished young woman. She has a heart full of love for others, a gift of music, and an imagination that can captivate her for hours. I attribute her extremely imaginative capacities to the hours she spent confined to a hospital room.

FIVE years in remission!

This is the magic spot. Cured? I guess that's what we could say. It's the point where our Oncologist says that if AML showed up in her blood again it would be considered a secondary cancer and treated as such, instead of it being considered a relapse.

Here we are! Well, we actually hit 5 years at the end of December 2015. We celebrated by taking the three oldest kids to Florida for a re-visit of some of our Make-A-Wish fun - The Wizarding World of Harry Potter and LegoLand.

A few years ago we got off on our clinic appointments so this time around we just did blood work and a visit with our Pediatrician. Then, in December 2016 we will visit our Oncologist and do heart scans again. Me, being the Mom-oncologist that I have become, have done much research on childhood cancer and decided to ask our Pediatrician to do a Titer test to see where Erin's immunization antibodies are at. Erin received all her vaccinations up to 18 months and then was diagnosed with AML before she received her 2 year immunizations. After treatment she finished off her vaccinations, but I've been very concerned over the years about how effective those vaccinations were. Especially when we went to Disneyland a few weeks after that Measles outbreak in 2014. The five rounds of chemotherapy fully wiped out her immune system so it made sense in my mind that her antibodies would be wiped out too. Yet, after treatment we didn't re-do any of them, we just finished off the ones she hadn't previously received. 

The Titer test results came back showing that she had antibodies only for Chicken Pox, nothing else. That shocked me. When Erin found out that she would have to get a load of shots to re-do her immunizations she was less than thrilled. She hid under the table in the Pediatrician's office screaming and bawling. She scared the heck out of my two and three year olds that happened to be tagging along. But, now Erin is up to date on immunizations! This is one BIG reason why I'm super pro-vaccination. Please vaccinate your kids to help out kids like Erin who have a weakened immune system.

Blood work looks beautiful, nothing to complain about. 

Labs from 60 Month Clinic

White Blood Count 9.6

Hematocrit 40.1

Platelets 273

ANC 4400

Previous Labs from 54 Month Clinic

White Blood Count 6.9 (normal 6.0-10.0)

Hematocrit 39.2 (normal 34.0-40.0)

Platelets 250 (normal 150-400)

ANC 1900 (normal 1500-8500)

54 Month Clinic - 4 1/2 Years in Remission

Little Air Bear is only 6 months away from the magical 5 YEAR mark of being in remission from Leukemia. When we were in the middle of treatment and feeling like life wasn't even moving it was hard to picture 5 years out, but now we're nearly there!  So so soooooo close.  Once in awhile I get comments and emails from other parents who have children receiving treatment for Acute Myeloid Leukemia and they want to know how Little Air Bear is doing. There is a yearning to know that someone's child lived. I remember looking and grasping for someone (ANYONE) who had a child who lived. I am glad that we can share this blog with the world and let all of you know there can be success.  There is hope!

Her blood work is clear of cancer and the Echo of her heart looks awesome.

Another clinic appointment passed with flying colors!

We Love (love love love) Dr. Verma!

She always has a big smile and hug for us.

Erin was only 2 when she had cancer and just lately she has been asking a lot of questions about what she went through.  It is a blessing that she doesn't remember all that awful crazy stuff she went through. Such a blessing! We thank our Father in Heaven that she doesn't remember that. She wanted to see where she stayed for about 7 1/2 months of her life, so we stopped by the Cancer/Transplant Unit (used to be called ICS) and had a little look around.

Erin has watched several videos of herself in the hospital and she just thinks it's so funny that she would ride in these cars and try to run people over in them. She begged me to let her ride it around the hospital so she took a little spin around the entrance.

Thanks for checking in and for your prayers on our behalf.

Labs from 54 Month Clinic
White Blood Count 6.9 
Hematocrit 39.2
Platelets 250
ANC 1900

Previous Labs from 42 Month Clinic 
White Blood Count 6.2 (normal 6.0-10.0)
Hematocrit 40.9 (normal 34.0-40.0)
Platelets 241 (normal 150-400)
ANC 1600 (normal 1500-8500)

Hope For Those Fighting

I'm coming to face the fact that I can't forget that my child had leukemia.  My precious daughter had cancer. I haven't blogged much lately because we're in a happy place.  We're where I hoped we'd be - healthily resuming the crazy thing we call family life.  

Most cancer Moms and Dads move on, we're told to.

 But, I can't!  

 I'm online here to help you see there is hope!

There are so many Moms and Dads out there who have found out their precious infant, toddler, child, or teen has cancer.  42 will find out today!  It was the last thing you thought would happen to YOUR family!  What do you do?  After you have overcome the initial shock and bucked up and started into the chemotherapy regime then you get on the world wide web and start typing out questions.  

You ask questions online.  You search google.  You look for survival rates, you look for someone who had the same cancer as your child - down to the very detail of the subtype.  You look for the face of someone who survived.  You type out your greatest fears, the ones you are often afraid to ask the Oncologists.  You look for someone else who is in your situation because, frankly, you feel lost, lonely, and isolated. 

Most of all, you look for hope!

 I have received countless comments and emails from Moms an Dads all over the world who just want to know someone else whose child has survived.  The statistics are such, that survival isn't promised to everyone.  This is the most heart breaking part about childhood cancer.  So many little people pass away each year, not always from the cancer itself, but from the side effects of the treatment.

It is our very nature to want to know that things will be okay.

Our God has promised us that as we "search diligently, pray always, and be believing, . . . all things will work together for our good. " 

Elaine S. Dalton said, "That doesn’t mean that everything will be perfect or that we will not have any trials, but it does mean that everything will be okay if we just “hang in there.”  

If you're like me, you feel like every day you are literally "hanging" in there!

In Mark, the Savior has promised that “all things are possible to him that believeth.  So believe in yourselves. Believe that you are never alone. Believe and hope.  This does not mean that loss of life can be prevented, but it does mean that whatever happens, it will work out for our good.

It is always my desire to help you.  I want to help those of you who are struggling right now.  You are probably sitting in a hospital room, with your very sick child sleeping in the hospital bed next to you.  I wish I could be a little money fairy and pop into your hospital room and give you millions of dollars to ease the financial burden your child's cancer has placed on your family.  That is out of my reach, but what I can do is give you hope.

You can do this!

Yes, it is hard, so hard in every aspect of your life.

But, you are not alone.

God is always aware and He wants you to know that He is there to help you.  You just have to open your heart to feel that love and your pain and the burden you carry will be lifted.

I am also here for you.  

My daughter has been in remission for just over 3 1/2 years.  

Success is out there!  Many don't share the successes because they have moved on.  

They fought the fight and they try not to ever look back.

I am always open to chatting via email about questions, thoughts, concerns, fears, joys.

*****

You can reach me at: littleairbear1@gmail.com

Floppy Hat Faye

There just couldn't be a word that cancer families fear more than RELAPSE!  September 8th I learned that one of our dear friends' Acute Myeloid Leukemia had relapsed.  The news was heartbreaking for me.

This is sweet little Faye

Just before being diagnosed the first time with cancer in 2011 at the age of 4.  

Isn't she just stunning!

And, one during treatment in 2011

I think I spent the better of two days in a fog with my mind and heart going back and forth between worrying and praying for this family.  Our daugther's were back to back in treatment, albeit in different states, but the internet can do wonders in uniting those across the world struggling with the same trials.

Just shy of THREE YEARS of being in remission, Faye's cancer has returned. 

Faye will now undergo a couple of  rounds of chemotherapy to achieve remission and then she will have a bone marrow transplant.

Faye and her family

It is exactly these situations that pull our heartstrings and help us to look outside of ourselves.  Are we willing to bear one another's burdens?  Are we willing to make the load lighter for someone else?  Are we willing to give up something small or large to benefit another?

I often think about all of those who have donated to our CureSearch Walks and I think about how our family alone has raised well over $15,000 to support childhood cancer research in the last 4 years.  I think about how that starts with just one small donation after another.

Yesterday my husband and I took our two littlest daughters to McDonald's to celebrate their birthdays.  $17 later we had lunch and a playplace to hang out in.  It is odd how we can just swipe our cards so easily for $17 worth of burgers, fries, and drinks.  Yet, SO OFTEN we think twice about giving even just $10 to a great cause.  I am saddened at how much the world can just swipe their cards into debt for meaningless stuff.  I hate that word - STUFF.  It has no substance, no lasting joy, and no loving touch.

What is it about ourselves that we can easily spend $10 on stuff, but not on another's burden?

So, I call you to action.  Step up.  Be better!  Do without.  And, take a moment to find a way to help someone else.  And, if you feel in your heart that you could help Faye's family, then please donate something to help them out. 

You can access their gofundme account at this link to donate to Faye's Family.

You can also read about Faye on her Blog: Floppy Hat Faye.

42 Month Clinic - 3 1/2 Years in Remission

First, I have to share something. In a home where cancer is a common word, sometimes our kids just don't use it correctly.  Like, when fighting over who gets the stool at the sink first to brush teeth.  Things might be said like, "well you got the stool first, you always go first".  And then a sibling retorts, "well you got cancer first."  Um, yeah.  I don't really get it either.  But, our older kids were 3 and 4 years old when Air Bear was 2 and got cancer.  So, they really have no idea how awful cancer (and all that comes with it) is.  My son was SO thrilled today that we got to go to Air Bear's Hospital, he yelled as he jumped out of the car to go to Chinese class "I get to go to Erin's hospital today!!"  He loves, like LOVES, like super-duperly loves her hospital.  They have an amazing playroom on the 3rd floor and that is just about all he remembers from the whole cancer experience.  He dreams about living in that playroom.  Our kids are now 6, 7, and 8 and they have odd conversations about cancer.  I try my best to explain what we went through, but they'll never completely understand.  I'm grateful for that.  I'm grateful that they only remember the bright happy things about what we went through. 

Well, let's shout it out!  YIPPEE!!!!  Yippee for another successful hospital visit!  It's amazing how quickly time flies and we don't think about cancer coming back.  I hardly bat an eye about going to get a blood draw now.  I didn't sit and worry if this one would show signs of her cancer coming back.  It is just one of the perks of getting further and further from where we were on June 1st 2010 when we found out our Little Air Bear had Acute Myeloid Leukemia. We are in the clear to come back in one year.  We get a whole 'nother 365 days away from the hospital (and all the memories that come back when I visit).  Niiiiiice.

**Pictures from today's visit**

Playing in the waiting room.  She had just gotten her poke in her arm to draw blood and was a champ at holding still and not crying!  And, she had it all planned out how she was going to pick a prize from the prize box for her sister and brother instead of herself.  Sweet, huh?!

Getting ready for her ECHO

We get these yearly because her hard core chemos can cause future heart damage.

She watched Frozen on the TV while I watched the ECHO of her heart.

Results say everything looks fabulous!  Take that nasty chemo!!!

Her older siblings enjoyed playing in the playroom while they waited!

A new toy in Oncology - she was excited!

She colored a picture for me.

"To Mom - Luve Erin"

She's growing!!

She is in the 0% for weight, but she JUMPED up to the 11% for height! 

Wowzers!

She branched out here and chose chocolate milk instead of Root Beer.

Awww, Dr. Verma . . . let us count the ways we love you!

"Mom, let me listen to your heart."

Labs from 42 Month Clinic

 White Blood Count 6.2 (normal 6.0-10.0)

Hematocrit 40.9 (normal 34.0-40.0)

Platelets 241 (normal 150-400)

ANC 1600 (normal 1500-8500)

 

Previous Labs from 36 Month Clinic

White Blood Count 7.6

Hematocrit 40.1

Platelets 238

ANC 2800

Childoohd Cancer is Right Next Door

You just never know what the future brings.  A year and a half ago we changed jobs and found ourselves a comfy home in a wonderfully cheery neighborhood.  A few Sundays ago I opened my email to find the most shocking news.  Our 16 year old next door neighbor (and fabulous babysitter) was diagnosed with Hodgkin Lymphoma.  My heart just burst!  It was like all that yucky-cancer-hurt buried inside my heart was burst open and thrust upon someone else.  I wanted to catch all that bad cancer pain in the air and not let it escape to another mother's heart.  I had been there.  Now they are living it - right next door to me!

The minutes after I found out that our own Little Air Bear had cancer my father said we would see great blessing come from this trial.  I firmly feel that.  This blog receives hundreds of hits each day, and over the last 3 years I have received many many many messages and emails from other mothers and fathers who are facing similar trials.  Sharing our experience with childhood cancer has been a great opportunity for me to give back, to help lighten the awfulness of it in others' lives, and to offer a brightness of hope that God is there and that He will lift us through our trials.

I have spent the last month working out a way to help our neighbors lighten their trial.  Childhood Cancer is draining in a million ways, but money is such a hard beastly reality of cancer.  All the food, gas, wear on your car, medical bills, family outings to forget about cancer, follow-up visits, and late effect treatments just add up like crazy all while you're still dealing with the normal financial realities of life.  It is a lifelong burden a family with cancer is faced to deal with.

For the entire month of March P.S. I Adore You will feature our friends as their cancer family of the month.  All donations made that month will go directly to their family.  So, hurry . . . donate and/or shop . . . their super fun items change daily and are discounted a ton!

Directions on how to donate:

Please visit www.psiadoreyou.com.  Once on the P.S. I Adore You website you may (1) choose to purchase something, from which a percentage will go to my neighbor.  Or, (2) you may donate directly by clicking on "Donate to Childhood Cancer" on the top left of the homepage.  The items P.S. I Adore You sells on their site change daily, so feel free to stop by their site a few times this month to see their ever-changing stock of awesome discounted items.

Check out the P.S. I Adore You Facebook Page and "like" them to get daily updates on new items added daily.

Those who donate at least $10 between now and March 10th will be entered into a drawing for a $20 Pizza Pie Cafe Gift Card.  Win win!  Every 10 days a new prize will be announced!

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

December

It's been awhile, but I'm checking back in here.  We are doing well, we are healthy and happy.  The last 6 months have been crazy for our family with the addition of a new baby, a new job for my husband, a move to a new city, and spending 4 months in limbo as we waited to get into our new home.  We are thankful to all be together in our own home - finally! 

This time of year always brings happy and anxious feelings.  I love Christmastime.  I love being together as a family and enjoying the holidays with all the wonderful music and activities.  This time is also so very dear to us because on Dec. 14th marks the anniversary of Erin finishing her cancer treatment.  Dec. 14, 2012 will be her TWO year anniversary of coming home from treatment for the last time.

Erin's cancer is something that I just will never forget.  It has gotten easier, much much easier, but going through something so stressful and scary still makes my heart ache.  After looking back, I see that I've probably struggled with some depression and post traumatic stress from this experience.  I'm so thankful for my family and friends who have buoyed me up without knowing I was struggling.  And, I am especially thankful to my wonderful husband who has been by my side through it all.

Just after Erin finished treatment 2 years ago I got a journal specifically for writing down all of the wonderful blessings and miracles I saw during Erin's treatment.  I spent several days writing in it.  It was very difficult to write down the tender things, but it was very therapeutic for me and I believe it helped me to cope with what I'd been through.  I have kept the journal in my drawer, but I couldn't bring myself to open it up for the last two years.  I didn't want to re-live any of those emotions.

After moving and sort of re-starting my life I've been able to open up some of the old wounds and 2 nights ago I read through what I had written.  I want to share just a few:

"In the beginning I consciously asked myself what my attitude would be.  How am I going to react to what is coming.  I made the decision to always be positive.  Always."

"I made the decision to be kind to the staff.  Even if they messed up.  I was not going to get angry at anyone.  I wanted to have a thankful, grateful attitude amidst the anguish of a child suffering with cancer."

"My spouse!  My companion!  I was extremely thankful that we were strong together.  I am so grateful we had so many similar reactions.  I am glad he didn't flip out, get angry, depressed, or reclusive.  We both went hand in hand, with positive attitudes.  We pulled each other upwards through the trial."

"Some said that this experience would bring John and I closer together.  I heard some say the opposite.  It doesn't just happen like "wow, we are closer."  We had to work extra hard - harder than before.  That work brought us closer."

Erin has her two year follow-up appointment just a few days before Christmas.  Of course I am antsy, but I don't really have cause to worry.  Until then....

Babies and Walks

Little Air Bear has a new little sister!

(she was wearing a mask because she had a cold)

Part of the miracle of having a new sister is the awesomeness of ViaCord's Sibling Connection program.  Through ViaCord's program we were able to save the stem cells from our new baby girl's cord blood and we banked it, along with some cord tissue, in hopes it could save Erin's life.  If Erin's Acute Myeloid Leukemia were to relapse she would need a bone marrow transplant.  If our new baby is her perfect match (our other two kids were not) then instead of using a bone marrow donor off of the Be The Match registry we would use our new baby's cord blood for the transplant.  

Isn't science amazing?!  

Our family is in love with our newest addition.  We are now a family of six!

It was so much fun having the kids see their new sister for the first time, but funny enough, the kids spent most of the time pretending to be doctors rather than oohing and aching over their sister.  There's something that has to be said about our family who spent 146 days in a hospital room during cancer treatment: The kids LOVE to play with all the medical gadgets.  Our new baby had several "doctors" all trying to take her blood pressure and check her heartbeat.

Besides having a baby, we have been actively raising awareness and raising funds for the upcoming 2nd annual CureSearch Walk in our area!  Up to now, our team has raised $4117.09!  We are getting closer to our goal to raise $5000 by Saturday.  We only have 4 days left! 

Click Here To Make a Donation

to Team Cache Valley Cancer Kids

in honor of Little Air Bear

So far this year, our walk has raised $104,609!  Our goal was $90,00 and we have exceeded it by nearly $15,000 already!

Thank you so much to all of you who have donated this year and in years past.  We appreciate so much that you have been willing to help us raise money for childhood cancer research.  100% of your donation to our walk will go directly to childhood cancer research.  Just 30 years ago there was no cure for childhood Acute Myeloid Leukemia.  Now the success rate is near 60%.  That's good, but not good enough.  We hope that through raising funds for research we can get that cure rate for AML and all other childhood cancers to 100%!

We're in 5th Place

Right now, Team Cache Valley Cancer Kids is in 5th place out of 69 teams for fundraising!  I'm feeling competitive and I think we could get 1st place.  Help us reach our goal to raise $5000 for childhood cancer research...right now we're at $3727.09.

Please donate $10 today in honor of Erin.

DONATE HERE

Every dollar donated goes to childhood cancer research, nothing is kept for administrative costs.

We only have 24 more days until our CureSearch Walk.....please donate today!

21 Month Clinic

Our drive down to Primary Children's Medical Center was pretty uneventful.  It's weird how we go there for the same labs we've been doing in our hometown lab, but it's always waaayyyy more emotional for me to go to Primary Children's.  If I was just going to the local lab I'd hardly bat an eye, but driving down to PCMC gets me thinking about how horrific it was to be thrown into childhood cancer with my sweet little air bear.  I got a little teary eyed as I recalled some of those emotions the first time we took her there after learning that abnormal cancer cells were found in her blood.  These are feelings and emotions that will never leave, most of the experience is pretty blocked, but there are some that will remain with me forever - which I think is good - we need to remember the bad with the good to be able to learn and grow from our experiences.

We got to Primary Children's and took a picture by the "Rainbow Horse" that Erin loves to greet.

We got to the lab right on time only to find out that no one was expecting us.  As sometimes happens, you don't get put in the computer.  Hematology/Oncology didn't even have us down on their calendar.  Everyone was really accommodating and after an hour of figuring out registration and getting paperwork faxed to the lab we were finally able to get Erin's blood drawn for her CBC.  

Last time Erin was a star during the poke and blood draw, only shedding a tear and not having to be restrained.  This time she was a real stinker!  It was four against Erin: Me, two nurses, and a child life specialist and she was still screaming and thrashing.  It's amazing they got a good poke and blood draw done!

But, all was better once we got to the Hem/Onc Clinic and got the usual Cheetos, Root Beer, and Chocolate Pudding.

We got a real treat when Dr. Barnette bounded into our room.  We haven't seen him since Dec. 2010 when Erin finished treatment.  He was one of the Oncologists who cared for her during treatment, but he's not our primary Oncologist so that's why we never see him anymore.  He had seen Erin's name on the list for today and was so excited to see her.  Erin doesn't remember Dr. Barnette, she was only 2 when she last saw him and now she's 4, but he will forever remain in our hearts.  He is amazingly fun and energetic at all times.  I bet it is VERY rewarding for a Pediatric Oncologist to visit past patients who have remained in remission from their cancers and see them grow and be healthy.

We got our check-up visit with Dr. Verma (whom we LOVE) and all looks good.  She recommended we bank our upcoming baby's cord blood and I was excited to tell her we already had the kit ready to take to the hospital with us in 3-4 weeks.  Of course, we all hope that we won't need the cord blood for Erin (if she relapses we would use the cord blood stem cells instead of doing a bone marrow transplant), but it is wise to collect it if we are capable of doing so.

Erin's blood work looks great!  Apart from having many colds and coughs and a broken collar bone (pictured below), she has remained relatively healthy these last 3 months!  

Our next clinic visit will be at Primary Children's in December for our 2 YEAR....did you hear me scream that?....TWO YEAR post treatment follow-up! 

As we were leaving the building, Erin asked if she could throw a coin into the pond.  She threw her penny into the pond and made a wish on it.  As we walked to the car she asked me if we could drive to Disneyland instead of going home.  I said, "no, it's too far, but we'll go again someday."  She said, "Darn it, that's what I wished for!"

Labs from 21 Month Clinic

White Blood Count 8.2 (normal 6.0-17.0)

Hematocrit 40.4  (normal 34.0-40.0)

Platelets 273 (normal 150-400)

ANC 2900 (normal 1500-8500)

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