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 

Cuteness

A little bit of cuteness.

Little Air Bear has been in remission for nearly 20 months now and I think she looks healthier than ever before.  She will have her follow-up blood test and physical at Primary Children's at the end of August.