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