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)

6 Days

Only 6 days left until Erin's one year mark!

Today we are thankful for

Hair!

Before Erin had cancer she had pretty thin scraggly blonde hair, then cancer hit and only 20 days after she started chemotherapy she had a squeaky clean head. The high dose chemo kept her hair growth away and she didn't start getting little brownish red hairs on her head until she finished treatment last Christmas. A lot of people attribute cancer with a bald head, but there are a lot of kids out there who have a full head of hair and are still fighting cancer. We are thankful for the fun times we have had trying to style Erin's hair as it grew in, we had some funny remarks about our "handsome little boy" when it was just coming in, but overall Erin hasn't really seemed too phased about the whole hair thing. I think that is one of the blessings of having her cancer when she was so young.

Please enjoy these pictures of the many hairstyles of Erin:

Birth

6 months old

1 year old

23 months old (one week before cancer diagnosis)

2010 amid cancer treatment

Dec. 2010 just after finishing treatment

January 2011

February 2011

March 2011

April 2011

May 2011

June 2011

July 2011

August 2011

September 2011

October 2011

November 2011

December 2011

7 Days

Only 7 days from Erin's one year mark!

Today we are thankful for

Blood!

**Give the gift of life this season**

When Erin arrived at Primary Children's on June 1, 2010 her platelets were only at an 11.  A normal platelet count is 150-400.  She received platelets and red blood transfusions within a few hours of her cancer diagnosis.

Several of our friends have had bone marrow transplants that have saved their lives with a many thanks to those who have done the simple cheek swab required to join the bone marrow registry.  It amazes me how few people are registered on the bone marrow registry.  Shannon Tavarez, an 11 year old who played Nala on the Broadway Lion King, died of AML because no bone marrow match was available on the registry.

Please consider saving a life

Join the Bone Marrow Registry

Erin received 13 red blood transfusions and 13 platelet transfusions.

Every 2 seconds someone in the U.S. needs blood

More than 38,000 donations are needed each day

Less than 38% of the U.S. population is eligible to donate

One donation can save up to 3 lives

Only 7% of the U.S. population has O neg. blood, the universal donor

www.redcrossblood.org

Enjoy this video on the need for joining the bone marrow registry

You can join the registry if you are age 18 to 60. Just about anyone can join! Those who cannot join are those who have AIDS, cancer, herniated disc or spine fracture/rods in your back, had hepatitis B or C, serious or chronic kidney problems, liver disease, organ or tissue transplant, active Tuberculosis, and if your BMI is extremely low or extremely high.

A bone marrow donation can either (1) be taken from your hip while you are sedated or (2) like when you give plasma through a needle in your arm or (3) cord blood from a newborn

Consider donating your newborns' cord blood

Want to know what joining the bone marrow registry is about?

Watch this entertaining video

8 Days

Only 8 days until we reach Erin's 1 year mark!

Today we are thankful for 

 Miracles

During Erin's cancer treatment we were the receiving end of many miracles.  A few I'd like to share with you...

The process of finding Erin's cancer was truly a miracle.  It was a Saturday and Erin and I had been playing together in her room and I marveled at how strong her personality and spirit were, but it also sort of bothered me that she was so small for her age (if you've met Erin you'll see that she is tiny...she looks a year younger than she is).  A short time later I rocked her to sleep and held her longer than usual and just watched her sleep in my arms.  I had a distinct impression that there was something wrong with Erin's body.  She had such a strong spirit, but her body was weak, it was lacking something and she looked sick.  I noticed the bruises on her body (we counted about 20 bruises on her body the day she was diagnosed) and that her skin was very pale, almost translucent.  While I rocked her I was reminded that I had a doctors order for a complete blood count test in my cupboard.  When Erin was younger she was anemic for more than a year so we did a few blood tests to follow that.  The following Tuesday (Monday was a holiday) we took Erin to the lab for a blood test and only 2 shorts hours later we found out that Erin had leukemia.  It is miraculous how quickly we caught Erin's cancer, we didn't even see a doctor to diagnose it, just that simple little blood test and a big miracle.  (This is a miracle because AML grows so rapidly we were able to catch it quickly without the hassle of mis-diagnosis)

It was a miracle how quickly we had family around us when we found out Erin had cancer.  I called my mom and told her and within 30 minutes I had my mom, dad, and my little sister here helping us out, praying with us, and giving us blessings before we left for Primary Children's.

During the first round of chemo it was very difficult for me to be in my home with Erin's empty bed in the next room.  It was also very difficult for me to be in the hospital separated from the rest of our family.  I worried so much that Erin would feel estranged or left out of our family and that it would create emotional problems for her.  When we started the second round of chemo I decided that it was important to make Erin's hospital room as close to "home" as possible.  I started praying that we would feel the spirit of our home in that little hospital room.  I also brought in a CD player and started playing music in her hospital room because we always have music playing in our home.  It was miraculous how that prayer was answered.  Every time I entered Erin's hospital room it felt like I was entering my home, there was a feeling of love and home in her room.  It was such a blessing to have her hospital room feel like home since she spent nearly a year living there.

During Erin's cancer we were assigned a new home teacher, Preston Parker who became a huge blessing for our family.  The first few months after Erin was diagnosed we didn't make any friends or get to know anyone else with cancer.  We felt so isolated, but Preston's monthly visits in our home were such a relief for us!  Preston is a 10 year cancer survivor and he understood so much of what we were going through.  It was amazing to talk to someone who got it, someone who understood us and understood chemotherapy. I truly count it as a miracle and a blessing that Preston was assigned to our family at that time.

There was a time during Erin's treatment when she got a horrible sore.  It became a big issue and started to affect her treatment schedule.  I was so worried about what would happen to her and the serious problems that could come from that sore gave me many many sleepless nights.  I took the opportunity to pray sincerely to my Father in Heaven in a peaceful place.  I asked God to make that sore disappear and to heal Erin immediately.  He didn't do that.  But, he did give me the most amazing feelings in my heart in answer to my prayer.  He opened my heart and helped me feel some of his love he has for Erin.  I could feel that he was worried about her too, he is her Father too.  Somehow I had overlooked the fact that God was Erin's father too and that he loves her even more than I do.  I count that understanding that he gave me on his love as a miracle and blessing.  He didn't heal Erin right away, but he healed my heart and helped me understand a little more about love.

"Miracles are natural. 
When they do not occur,
something has gone wrong."

9 days

We are only 9 days away from Erin's one year mark of being cancer free!  Each day I plan to post something about what we went through in honor of Erin and her battle for life. 

Today I want to thank the many people who helped us get through the 7 1/2 months of inpatient treatment.  There are so many of you out there that have been praying for us, some of you we don't even know, but we want to thank every one of you!  I LOVED getting e-mails, letters, texts, facebook messages from so many of you telling me that you were praying for us.  I especially loved hearing the stories about your children praying for Erin.  We are so thankful for the packages, gifts, visits, and letters of encouragement that got us through the roughest times. 

Erin at Thanksgiving time 2011!

 

I'm posting a few picture "thank yous" in no particular order...I wish we had pictures of everyone who helped us.  Thank you to all the countless neighbors who babysit nearly everyday for 7 1/2 months.  Thank you to our extended family for their support, thank you to our wonderful nurses and Oncologists at Primary Children's, and thank you to all of those who so diligently checked our blog to make sure we were surviving.  Please know that we are so grateful for all the service shown our family, it would be impossible for me to thank everyone and recognize everyone, so please know that we are grateful to you all!

A big thank you to my dad who spent many weekends with Erin!

Thank you to one of our fabulous babysitters, Haley, (and her family) who kept constant contact with Erin.

Elliot the therapy dog!

The most fabulous Belle EVER!

I wish we could find her and thank her.

Our good friend Cris who came to visit nearly everyday after work.  He was Erin's best entertainment every late afternoon, here he was letting her paint his fingernails (notice his gloved hand - ha ha)!

My mom!  She spent just about as many days staying with Erin as I did.  She did her research right along with me and together we kept our Oncologists on their toes with all our questions. 

Aunt Diana who spent several nights taking care of Erin.

The Primary Children's Music Therapist. We all looked forward to her visits, music really helped Erin cope with many of the emotional aspects of cancer.

All the Cancer Fighting Cuties!

We are SO grateful to have the support of other families also going through childhood cancer.

Cami

 Millie

Chase

Rachel

Thank you for all of the letters and gifts to keep Erin going!

A huge thank you to Angela Maxwell and the group of Little Air Bear supporters who made and purchased the Beary Merry Christmas Festival of Trees in honor of our Little Air Bear!

Aunt Annie and her belief in miracles.

Our ward family and all the primary kids!

I think the picture below, our then barely 5 year old Cecily, drew for a school project is so beautiful.  It is so fitting that she drew Erin with a little pink hat on instead of all that hair that everyone else has in the picture.

Thank you to EVERYONE!