Now is a time...

There was once a time...

when every day was a living nightmare

when I thought we'd never get through

when I sobbed multiple times a day

when I thought we'd never all be under the same roof

when I wished I could be normal

when every prayer pleaded for Erin's recovery.

Now is a time...

when the nightmare is now the memory of a bad dream

when we feel the joy of what we've overcome

when the tears that fall are full of gratitude

when we are all together

when I understand there is never a normal

when every prayer thanks for Erin's remission.

We are grateful for Erin's remission and each day that she gets further and further from her cancer diagnosis.  Erin is so full of life.  In her 3 1/2 years she has overcome so much, I hope that sets a basis for her life.  I hope that she will never accept defeat in anything challenging that she may face in her future. 

Erin started Preschool last week.  It makes me teary when she goes, I just can't believe she is here with us doing normal 3 year old activities.  She loves preschool, it has been a small transition for her...I think she missed me on the first day because she told me she cried for me at preschool.  But she hasn't cried since that first day.

The kids on the first day of preschool

Sometimes when Erin finds me on my computer she asks to watch her cancer video.  She LOVES to watch it.  She comments throughout the whole movie, telling me about what she's doing in it, what she's wearing, about her blue tube-ees, and about how I cried all the time while she was in the hospital.  She asks to watch it over and over.  She laughs though it while I cry through it.  I can't watch it without remembering all that we went through.  I am so thankful that we haven't seen any deep emotional scars in Erin from all that she went through.  I think that what she has overcome so far has built her self-esteem and confidence.  I love my little air bear.

12 Month Clinic

Erin, John and I all went to Primary Children's Medical Center for Erin's one year (12 month) clinic follow-up appointment (for Erin's Acute Myeloid Leukemia).  We first stopped in Cardiology for an ECHO.  We thought she'd also have to get an EKG, but we were happy to find out she only needed the ECHO.  Erin really hates the EKG because she really doesn't like all the sticky things they put all over her chest.

She did great in the ECHO, we promised her that she could pick out a special prize if she didn't wiggle.  We watched some Sesame Street during it and she did pretty well holding still.

Erin's ECHO results look really good, everything is normal.  She had the ECHO throughout her chemotherapy treatments because the Mitoxantrone (an Anthracycline) can weaken her heart.  Our Oncologists gave her doses of Mitoxantrone during her treatments, but they kept them at a level just below the "dangerous zone" for heart weakening.  She will have another ECHO in 3 years and then one every 5 years after that.

Then, we went to the Lab to get her blood drawn.  We had the best, most skilled, nurse EVER!  Seriously, this girl was amazing.  Needle in, blood out, needle out...in probably 3 seconds flat.  The nurses in the Lab where we've been going locally always seem really scared to poke a crying and kicking 3 year old.  If it weren't so darn expensive to visit PCMC we'd go there just for this nurse.

Erin still says she's brave and strong, but after so many bad experiences getting her blood drawn we have lost that fearless little attitude.  We asked the Child Life Specialist to come blow bubbles to help distract her.

I hope I don't look like a mean mom "smiling" while restraining my upset child.

 

We got to the Hem/Onc Clinic a bit early and they were early so Erin only had a few minutes to work on her holiday sticker picture in the waiting area.

Before we even set foot in our room Erin told us she needed to get her snacks.

I think it's so funny how she knows exactly what to expect and how the routine goes.  I am thankful that a few clinic appointments ago one of the nurses showed us where the snacks were and told us that we could just go get them ourselves.  It is so nice to do that because sometimes we have to wait quite awhile in our room for someone to come see us.  We really make ourselves home at clinic.  

 

I should mention that Erin had been sick for 5 weeks with a cold.  I took her to our Pediatrician back in the first part of November for a fever and cold symptoms.  The fever went away, but her cold symptoms, as well as eye discharge, continued for 5 more weeks.  Last week I finally called the Pediatrician again and we determined that she had a sinus infection (this is her second one).  I didn't want to take Erin to her clinic appointment with something that she could pass on to her cancer fighting friends so we got the antibiotics and she finished them up a few days before her appointment.  This is just one of those reminders that Erin's immune system just doesn't fight things like everyone else's.  She hangs on to everything she gets and it usually takes her twice as long to get over it.

She had a good time with Dr. Fluchel.  He is our primary Oncologist (I think this is the first picture we've taken with him).  We appreciate all that he has done to help Erin through the last year and a half. 

While we were in Clinic, my friend Autumn popped her head in to say "hi".  We really have made a lot of friends through all of this and it is always fun to see who else is "in" at the same time you are so you can visit.  We stopped by their room before we left and I had to marvel at how amazing Aubree looks.  She had a bone marrow transplant shortly after Erin finished her treatments.

We checked out of clinic and stopped by ICS (the cancer ward) to visit our friend, 11 year old Brielle.  Brielle and Erin were diagnosed pretty close together and they had their treatments at the same time.  Brielle is back in ICS recovering from her second bone marrow transplant as her AML relapsed in November.  She looked so good and she surprised me when she said she was happy that she'd have to spend Christmas in ICS, she didn't want to risk getting sick by going home too early.  We also stopped to visit a new friend we've made through our cancer moms group who has a 20 month old little girl (so close to Erin's diagnosis age) fighting AML.  Tenley is part-way through her second round of chemo.  We also had a lot of fun smiling and laughing with all the techs and nurses we met in the ICS halls.  I was surprised how many of them remembered Erin, they all marveled at how tall she'd grown and how beautiful her hair looked.  

Erin standing by the "Believe in Miracles" tree outside ICS (the cancer ward)

She was dancing with the snowman.

Although it is nice to stop by ICS and see all our friends, I really have a hard time doing it.  I have now only been back there two times since we left last December.

Erin's labs look grrrrrreat!  She has been approved to have follow-up appointments every 3 months now instead of every two months.  We will do every other appointment at Primary Children's and our hometown hospital/Pediatrician, that means that we only have to go back to Primary Children's two times in 2012!  To say I'm excited it a big understatement!!!

Labs from 12 Month Clinic

White Blood Count 8.6 (normal 6.0-17.0)

Hematocrit 41.6 (normal 34.0-40.0)

Platelets 258 (normal 150-400)

ANC 3600 (normal 1500-8500)

Previous Labs from 10 Month Clinic

White Blood Count 7.7

Hematocrit 44.5

Platelets 252

ANC 2600

3 year old Erin is One Year Cancer Free

Somehow it felt like we'd never hit that one year cancer free mark, but we did.  Erin's Acute Myeloid Leukemia (AML) is becoming more and more distant in our minds.  It is such a glorious and relief-filled wonderful feeling.  Of course, there's no magical bench mark that says she won't relapse, but every day that Erin stays cancer free her chances of relapse diminish.  If she hasn't relapsed by 3-5 years then she most likely won't relapse, but it is also still possible for her to develop another cancer.  We just do our best to keep those thoughts out of our heads and enjoy her here and now.

Who couldn't enjoy this cutie?

 

Last year, we celebrated Erin finishing her treatment with a cake and it's becoming a new tradition of ours.  We all get a candle on the cake, sing "happy birthday to all of us", and then we all blow out the candles together.

Here's the Dec. 14, 2011 

one year cancer free celebration cake

And now...on to becoming 2 years cancer free.

2-1 Days

Well it's TOMORROW!

Erin will hit her one year mark tomorrow, Dec. 14th.

Okay, so silly me, I know my post should read 2 days, but in all this counting down I actually started counting wrong from the start.  Ha ha, it's embarrassing and funny all at the same time.  So, now we're down to 1 day.  Wow, time flies, it's like I skipped a whole day!

Today I'm thankful for

Erin

Erin is such a joy in my life.  We had our 3 kids in a whirlwind of 34 months and Erin was meant to come when she did.  She is such a kind sibling too, she is very compassionate when someone in our family gets hurt.  She is always the first one to respond with sympathy.  She is one of the strongest little people, she can endure intense pain and all through it she would still be smiling.  She used to thank the nurses after they'd do something to her.  Erin has a way of getting just what she wants, she is persistent in her desires and she is pretty willing to try new things.  She is very mature for her age, she understands the feelings of others and she is right up there in trying to be big like her two older siblings.  This morning (after much begging) I gave Erin her first piano lesson.  She was thrilled (I hope she keeps that attitude) to be sitting at the piano like the rest of the family and she is a little natural when it comes to music.  She has a great love for learning and is mastering her first reading book.  She really tries hard to be good.  She knows a lot about a lot of things.  She thinks that she knows how to drive and she likes to backseat drive, always telling me to slow down and not hit the car in front, or to go when the light turns green.  She has been a great little shopping buddy while the kids are at school, she always asks for a sucker at the bank or a treat in the store.  She loves to dance and she has a great imagination.  I love to hear her playing with her little doll house and the great conversations her dolls have.  She is full of energy and has a great love for life.

I'm thankful to have Erin in my life!

3 Days

Only 3 days until Erin's one year cancer free mark!

This morning as I was doing the laundry I noticed something on my laundry basket that I hadn't remembered was there.  A little sticker that read "Room 2214".  That was the last room number Erin stayed in at Primary Children's.  I used to haul that basket to/from the ICS laundry.  Seeing that sticker brought back some reminders of life living in the hospital and doing the laundry there.

I remember washing my clothes and Erin's clothes several times when she'd pee the chemo out of her diaper and get us with it.  During chemo time they would keep her so hydrated that we had to faithfully change and weigh her diapers every 2 hours.  Occasionally a diaper would leak and I'd find myself with chemo-pee on my lap soaking my pants (I know this happened to John and Aunt Diana too, and probably some others who stayed with Erin).  This was actually very dangers for me, even though we put the chemo straight into Erin's blood stream.  This is just one of those memories that I'm thankful is far behind us.  I think I'll take the sticker off my laundry basket.

Today I wanted to share two videos taken of Erin this week.

Erin singing "Santa Claus Is Comin' To Town"

(we sing this all the time whenever someone in the family throws a tantrum)

Erin and Caleb dancing to "Princess Erin"

written especially for Erin by Songs of Love

4 Days

Only 4 days until Erin's one year mark!

Today I'm thankful for

Childhood Cancer Awareness 

and the great organizations that have helped our family

Gold is the color for childhood cancer.

Orange is the color for Leukemia.

September is Childhood Cancer Awareness month.

We are thankful to CureSearch

Last year our Little Air Bear Team raised nearly $2000 dollars for childhood cancer research.  What I love about CureSearch is that they focus on the children and they give more to childhood cancer research than any other organization (as far as I have researched).

(Erin at the SLC CureSearch Walk, July 2010)

You can watch the video I made HERE.

 **---**

We are thankful for Make-a-Wish!

They gave us hope during some of the darkest times.  There were many days that I would sit and stare out of Erin's hospital room window and watch the world go by.  People were busy with places to go and things to do, but we were stuck in that little room while Erin fought through so much to stay alive.  Make-a-Wish somehow made many of those hard days disappear with the hope of something wonderful, our trip to Disneyworld to Meet The Princesses!

**---**

We are so thankful for Sky View High School

and all the fundraising they did to support Erin's wish.

**---**

We are thankful for HopeKids!

 HopeKids provides activities for families with a child with a life threatening illness.  They give us something to look forward to, they are a big support group for families with cancer.

 

**---**

I am thankful for

The Utah Moms With Cancer Fighting Cuties

support group!

 

It took me 3 months to make friends with other moms who had kids with cancer.  At first, I didn't want to make friends in the cancer world because I didn't want to be in the cancer world.  But then, as we got used to cancer life we decided we needed friends who truly understood what we were going through.  We needed friends who simply "got it" without the explanations.  

 

I am part of a group of amazing women, here is a picture of the first "cancer moms dinner" we had at Primary Children's Medical Center in 2010.

Now this group has nearly 150 moms in it.  We meet each month in various restaurants throughout Utah to have dinner and buoy each other up through tears and laughter.

5 Days

5 days left until Erin's one year mark!

Today I am thankful for

Acts of Kindness

During Erin's cancer there were many acts of kindness shown our family.  I first think of my dear sweet elderly neighbor who watered my flower boxes everyday.  Miraculously I had planted my flowers early, which ended up being a week or two before Erin was diagnosed with cancer.  My thoughtful neighbor trekked over to our house every day and watered all the flowers in the boxes attached to the front of the house.  My flowers had never looked so beautiful and they haven't looked that beautiful since.  I'm sure it was all because of the love and devotion she showed them.  If it wasn't for her simple act of love I'm sure I would have come home from the long stays at the hospital to a bunch of dead flowers.  Those beautiful flowers were a welcome sight every time I came home.

There were many times that we found surprises our doorstep.  The kids were especially thankful for some cookies that were door-bell ditched.  I just felt bad for whomever it was because they had to run through our sprinklers to get to the front door.

Last Christmas we were the recipients of some serious Christmas love.  For each of the twelve days leading up to Christmas we found a surprise waiting for us on our doorstep.  The kids, John, and I would get so excited each day, and we looked forward in great anticipation to each new surprise.  This act of kindness helped us pass some of the longest days when we were waiting for Erin's counts to come up so we could bring her home and finally be all together with our family.

A few months into Erin's treatment the routine really started to wear on us.  John and I were seeing less and less of each other.  I will always remember my post Two Ships Passing in the Night as John and I passed each other on the freeway during the 2 hour drive from home/hospital when we swapped places.  It was only a month later that John and I weren't able to celebrate our wedding anniversary together.  Some of our close friends threw together a big anniversary surprise for us.  Every detail was well thought out, even down to substitute babysitters for Erin while were away.  We never learned who the generous people were who donated to make our surprise possible, but you can see how happy we were in Our Anniversary Surprise post and know that we are still forever thankful for your thoughtfulness.

Just three days before Erin's second birthday and only 17 days into her first stay at Primary Children's we had a surprise visit from Belle.  I guess there was a patient in ICS that wanted to see Belle and so someone arranged for her to come visit that patient.  While she was in ICS she graciously gave of her time to visit not just that patients room, but she visited almost every other patient in ICS.  There are 24 rooms in ICS and she was there for several hours.  We were the last room in ICS and we were the last family she visited.  She was so beautiful, so kind, and she spent nearly 20 minutes playing with Erin.  She read her books and they chatted about their favorite things.  This Belle was the best princess I've ever seen, and we saw a lot of princesses at DisneyWorld.  I wish there was some way to locate her and tell her how grateful we were for her visit.  She was so thoughtful to spend so much time with Erin.

In the first weeks of Erin's cancer we were given a large amount of cash by a few friends.  It was such a miracle and a blessing because the amount of cash we were given matched (to the dollar) the amount of money we needed to fix our van so we could transport our family to/from the hospital.

I am forever grateful for the many acts of kindness that were shown our family.

"When ye are in the service of your fellow beings, 

ye are only in the service of your God."

(Mosiah 2:17)