On June 1, 2010 our two year old, "Little Air Bear," was diagnosed with Childhood Acute Myeloid Leukemia (AML) Type M7. After enduring 146 days at Primary Children's Hospital, Erin is now in remission and living a full life at home with our family. Her strong will and constant happy smile is an inspiration to us all. Through our difficult circumstances we found great strength and peace in our Savior, Jesus Christ. Thank you for checking in on us.

Friday, August 26, 2011

8 Month Clinic

Erin's 8 month clinic follow-up appointment went really well.  She is still in remission.  I know I shouldn't be so crazy worried about these appointments, but I am. 

BUT, We are getting closer and closer to December and that is when her risk of relapse greatly drops. 

She was pretty scared about getting her hand poked in the lab.  But, she was happily coloring only a few minutes later.


It was such a treat to run into so many of our little cancer friends in clinic.  Ha ha...I should being calling running into other kids with cancer "a treat", but it has been very helpful for us to have friends like us.

Doing crafts with Brinley and Elena.



Sitting still while getting her "arm hug" from the blood pressure cuff.  Like her "Pinky Pie" outfit?  She found the hat on the hat tree and just had to have it since it matched. 


Patiently waiting to see her Oncologists and enjoying her root beer and Cheetos.


Erin and Dr. Verma.
We LOVE Dr. Verma! 


We had a bunch of time to kill while we waited for John and the kids to drive to SLC to meet us for a Make-a-wish activity so Erin and I played in the Forever Young Zone for 2 hours.  The volunteers here really do a wonderful job!


We had a snack in the gardens just outside of the Primary Children's main entrance.  I told Erin that I wanted to take her to a special place for our snack.  During the long days of living in the hospital I used to come here to call John on my cell phone, relax, cry, get away from the beeping hospital machines, or nap.  It is a beautiful place with lots of benches and a stream.  It's a great place of reflection and serenity and was a much needed relief.


Erin is really doing well.  I am very happy.  Our next visit will be in October and we have been given permission to do every other visit here in our hometown with our Pediatrician!  We love our Oncologists at Primary Children's, but these follow-up visits really aren't worth a 2 hour drive just for a blood test when we could just do that here. 

In December she'll go back to Primary Children's for her one year follow-up and she'll get an ECHO and EKG to check her heart and we'll see our Oncologists again then.  Here's to praying that she continues to stay in remission! 

Labs from 8 Month Clinic
White Blood Count 5.9 (normal 6.0-17.0)
Hematocrit 40.0 (normal 34.0-40.0)
Platelets 225 (normal 15-400)
ANC 1800 (normal 1500-8500) 

Previous Labs from 6 Month Clinic
White Blood Count 13.4
Hematocrit 38.9
Platelets 220
ANC 11,700

Wednesday, August 24, 2011

You better not eat anymore...

The last few days Erin has been asking me about once a day, "am I sick?" I always reply, "no, you are healthy and strong." 

Today, after we finished making a batch of soft gingersnaps she and my son were eating the cookie dough out of the mixer (yeah, I let my kids eat cookie dough).  Erin turned to her older brother and said, "you better not eat anymore or you'll get cancer." 

I stood there, absolutely stunned, for about a minute.  Why in the world would she say that?!  Then it hit me - Erin thinks sick=cancer.  If someone is sick, they have cancer.  I think she was telling her brother that if you eat too much cookie dough you'll get "sick" NOT get cancer.

The things I NEVER thought I'd have to explain to my THREE YEAR OLD!

Monday, August 22, 2011

Side Effects and Late Effects of Acute Myeloid Leukemia

It has been 8 months since Erin finished treatment.  I can't believe how time has flown and how much Erin's hair has grown in that time.  Here she is in January just before she got her central line pulled.


And here she is just last week.  Look at all that hair!


It's amazing how HAIR can make someone look so different (I still miss rubbing my cheek on her bald little head).  It is such a wonderful feeling running my fingers through her soft light brown hair.  Last year I made many memories of myself running my fingers through her blonde hair right before it fell out.  I wish we had had an opportunity to take some professional pictures of her before her hair fell out, but it just couldn't happen.  She was so sick the day she was diagnosed, she was admitted for her first 29 day hospital stay and pumped with high dose chemotherapy, her immune system was non-existent, and in just 20 days all of her hair was gone.

Well, now she's pretty healthy.  We have her 8 month check-up on Thursday.  I have to admit that it's been hard to go 2 months between check-ups.  I must be crazy because the thoughts of relapse really haven't subsided.  I wonder if they ever will. 

A few nights ago Erin had a bad dream and woke up screaming.  John and I rushed to her, we tend to rush more to her than our other kids, I have debated whether I'm parenting fair, but in the end we've decided that Erin is different, everything is different with Erin.  Cancer changes everything.

In her dream she was screaming, "don't, don't.  Ouch, ouch." and lots of other things.  Old memories of her being pinned down in ICS at Primary Children's getting various "procedures" done rushed back into me.  She screamed another time in the night with some of the same things.  I laid in bed being mad at cancer that night.

Erin still takes a good 2-3 hour nap each day, she has bruises on her legs and she is always cold and hungry.  I have the hardest time wondering if I'm doing the right things as a parent.  I just can't decide if she is being a normal 3 year old or if she is struggling with something.  Before leukemia I wouldn't have thought twice about a bruise, but now, a bruise is a sign of cancer because that was how it all started.  I feel insane because every little kid gets bruises on their legs, every kid complains about being hungry.

So now on to side effects and late or delayed effects.  These are some things that I just couldn't look up for a long time.  I didn't ask too many questions when Erin was getting treated, but I've finally decided that I need to know these things so that I can be aware of any potential problems. 

Erin is in remission for her cancer and her hair is growing.  Seeing her now you would hardly know that her life hung on a thread.  To sustain her life she was filled with toxic chemicals (high dose poisons) and hopefully she will continue to be healthy and strong.

John and I called the LLS (Leukemia & Lymphoma Society) and they sent us a very informative packet called "Long-Term and Late Effects of Treatment for Childhood Leukemia or Lymphoma".  Here is what I have found that applies to Erin:

-VP-16/Etoposide chemotherapy can cause her to become anemic again and she could have bone marrow failure which can then result in a secondary cancer (usually AML).  In her case, she would relapse into a more vigorous form of AML than she previously had.  This is one of the biggest side effects that I worry about.

-Daunorubicin and Mitoxantrone chemotherapy can cause heart damage (heart muscle injury, chronic heart failure).  She had several ECHOs and EKGs while in treatment.  She will continue to have these periodically throughout her lifetime to check her heart function.  Sometimes the heart damage appears immediately, sometimes it takes years to develop.

-Most survivors go on to have a low risk for infertility, however a small number are unable to have children due to a failure to ovulate and/or conceive, have irregular periods, or develop early signs of menopause.

-Fatigue or an unusual tiredness that interferes with daily life and cannot be overcome by resting or a good night's sleep can happen.  It affects many patients of all ages treated for Leukemia.  For some patients, fatigue following treatment can last for months or years, causing physical issues such as difficulty performing daily tasks and cognitive issues such as concentration problems.

-Learning Disabilities can occur quickly or become evident years later such as problems with thinking or memory, spacial relationships, concentration, planning and organizing, attention span, reading and spelling, processing speed, visual memory, understanding math or remembering math facts and problems with fine motor coordination like hand writing.

-Most survivors are psychologically healthy, but childhood leukemia survivors were more likely to report changes in mood, feelings or behavior, including depression or post traumatic stress disorder.

I'm not trying to be scary, just informed.  I really hope Erin is immune to these effects.  There are many kids who develop only small effects and there are some who develop severe effects.  It's like a lottery.  It makes me wish more than ever that there could be a better way to treat cancer. 

There are so many regulations in the FDA that it is nearly impossible to clear new treatments, yet kids are dying all the time because new things aren't being tried.  I wish we could see more like THIS most amazing study.  The scientists took the patients blood, altered it and then put it back into the patient...in TWO WEEKS the cancer was gone.  No crazy side effects. 

This is why I am so passionate about childhood cancer research and about CureSearch.  I was so excited to find out that CureSearch is donating $5.5 MILLION dollars to childhood cancer research. 

Some of that money comes from the money WE RAISED for our CureSearch walk!  Isn't that exciting that we are a part of finding a cure?! 

They are giving $1.5 million to COG (Children's Oncology Group) Hospitals, like Primary Children's to help in the cost of enrolling patients in clinical trials.  They will be giving $3.5 million to some specific cancer research and AML (Acute Myeloid Leukemia) is one of those specific cancers they are researching!  $500,000 will go towards informing Doctors and nurses and funding projects with the COG. 

Isn't it nice to know you have made a difference?!  Thanks again to all of those who donated to our CureSearch walk.

Sunday, August 21, 2011

Make-a-wish day SEVEN

Day 7
 Our last day

 It has been hard for me to blog about our last day of Erin's wish because we were so sad to come home.  We spent the morning in the village enjoying every last minute of our time together there.

We met up with Diego (too bad Dora wasn't there - our children worship her)


We did some last minute surfing. 




And we couldn't miss out on another trip to the swimming pool.





After we packed up our suitcases we browsed through some of our favorite Village things.  Caleb loved the Amberville Train Station and remote control boats.


We did a quick trip through the Dino Putt miniature golf course.  This mini golf course is seriously the best one I've ever seen.  It was completely interactive and had a huge amount of creativity. 


Check out these dinosaurs at the Dino Putt.


video


...and these dinosaurs. 
I love how they catch the kids off guard.  It was such a surprise, we all jumped the first time.

video


We found an employee in the office to let us into the new Give Kids the World Museum, it wasn't quite finished, but we really wanted to see it.  We were the only people in there.  There were displays on each of the buildings in the village and stories about how the building came to be.  I think I cried at each display as I read each story.  The stories talked about families with a child with cancer who wanted to give back to the village in some way.  In almost every story the child died from their cancer and the buildings were built as memorials for that child.

It was inspirational to read about the strength the families had while loosing their child.  It was also so scary for me because I just don't know how I could handle loosing Erin.  I really have a hard time reading any story about children with cancer nowadays, even if they survive.  It is just too real.

We all cried as we left the Give Kids the World Village.  The kids were bawling and saying that they wanted to live there forever.  John and I were crying because the time we had there was priceless and we will never be able to recreate the amazing time we had together with our family.  Our hearts were full.  Erin's whole wish trip was truly incredible.  I cannot thank enough those involved in making Erin's wish come true.

We were all so tired and Caleb developed some kind of sickness/fever at the airport (Erin ended up getting it the next day).  We searched all over the airport for children's Tylenol, but they didn't have any, all we could find was extra strength Advil gel caps.  I called a nurse at our pediatrician's office and she said we couldn't give it to him.  Oh well, he fell asleep before we boarded the plane and then he didn't wake until we were flying over Utah.  Some of the people around us were asking if we had drugged him.  It was nice to not have the wrestle all the kids during the flight, but it was too bad he wasn't feeling well.


The girls had fun playing my little ponies on the flight, but once in air they both conked out.  We were so worn out from all of our fun, but it was well worth it.




Like I said before, it has been hard to express the thankfulness we feel for this most amazing trip for our family.  Erin's heart was full of happiness and joy every day.  All three kids were so kind and loving and enjoyable all throughout our trip.  There were few fights or tantrums, we just had lots of fun and made a ton of memories.

Erin talks about her wish trip to meet the princesses nearly everyday STILL.  It was a huge gift for her.  Even though she is young, I think she'll remember it for her whole life.

Thank you to everyone who helped make Erin's wish come true; our wish granters, Make-a-wish, Sky View High School, and the many others.  Thank you so much!

Tuesday, August 9, 2011

Dolly Gets Sick

You know cancer has changed things when your 5 and 3 year old girls are playing dolls in the room next door and you hear a conversation like this:

5 year old, "is your baby sick?"

3 year old, "yes, she has leukemia."  Then you hear your 3 year old making pretend throwing up sounds.

Monday, August 8, 2011

Make a Wish Day SIX

Day Six

This was Erin's most magical day during her Make-a-wish trip because....

IT WAS HER BIRTHDAY!

I tell you, this was an awesome 3rd birthday for Erin.  She started her day visiting with Goofy, Pluto, Mickey & Minnie in the Give Kids the World Village.  Just look at those happy smiles.



Here's a picture of her 2nd birthday LAST YEAR....
Her hair was falling out and she was 20 days into round #1 of chemotherapy.


I'd say that it was nearly perfect for our trip to miraculously fall around Erin's birthday.  We woke that morning to find a balloon tied to our mailbox and a special invitation for Erin to pick a present from the House of Hearts.  She ended up picking out some My Little Ponies that she is still enjoying today.

We spent Erin's birthday at the Magic Kingdom.  This was one of the most special days of our trip as it was totally devoted to Erin.  She wanted to visit as many characters as possible so we spent nearly the entire day finding princesses and other characters.


First we found Jasmine and Aladdin.


Jasmine planted a huge kiss on Erin's forehead and every princess after that kissed Erin's face.  She ended up with so many kisses there wasn't room for more.  The kisses pleased our little air bear so much.  It truly made her day.


Erin chatted with Rapunzel and Pascal...


...and Ariel and Prince Eric.


We scheduled lunch at Cinderella's Castle.  This was the most amazing meal, the kids were so fascinated with the food, the princesses, the wands & swords they were given, and a turn to make a wish on a star.  One of our greatest dining-out fears as parents is: will our three little kiddos stay in their seats during dinner or will we be chasing them around the restaurant...nope, no fears here, it was wonderful!

Erin saw Cinderella first.  Cinderella is Erin's most favorite princess.


We were thrilled to find Snow White at the lunch because we had been looking for her all morning.  A few posts back I mentioned that we had been carrying around a mounted picture that we were having all the princesses sign and Erin was dying to have Snow White sign it. 


She got a kiss from Belle.


Erin with her magic wand.
The kids were starting to get goofy...



...but thankfully dessert came.
They had little dishes of vanilla ice cream and small dishes with toppings that they could decorate their ice cream with.  Can you see how occupied they were with decorating their ice cream, they wouldn't even look up to smile at the camera.


After lunch we decided to skip over to Epcot and try to find Tinkerbell.
We arrived just a few minutes after Tinkerbell left for the night...we were majorly bummed.  We tried to have the guest services locate her, but she was already off to prepare for her flight across the sky before the fireworks.  We were all pretty sad we missed Tinkerbell.  But oh well, next time.


We got to see Winnie the Pooh and Tigger too.




We ate delicious Chinese Food and headed back home for non other than...

ICE CREAM!


It was the longest greatest birthday Erin has ever had.  It was a magical day, she was happy throughout the entire day.  It was so hard to go to bed at night though because we were really dreading our flight back home the next day.  We all wished we could just live in the GKTW village.  We are so thankful for make-a-wish for sending us on the most amazing trip of our lives.  We are so grateful for the Disneyworld staff who treated our Erin like royalty.  She was extremely loved by every single staff or character she came in contact with.

All in all, we ended up getting signatures from Cinderella, Rapunzel, Princess Aurora, Aladdin & Jasmine, Snow White, Prince Eric & Ariel, Belle, Daisy & Donald Duck, Winnie the Pooh & Tigger, Goofy, Pluto, Mickey & Minnie Mouse.  Soon I'll get some pictures printed and put them in our matted signed frames and hang them in the hallway for everyone to enjoy.


Thursday, August 4, 2011

Leukemia, Thoughts & Pictures

Acute Myeloid Leukemia, some random thoughts and a few pictures of my cutie.

--Erin's treatment was 7 1/2 months long, it has now been 7 1/2 months since she finished.  I can't believe it.

--The other night I had dinner with a bunch of other moms who have (or had) kids with cancer.  Associating with these women is the best therapy.  They completely "get it".  It is such a blessing to be a part of this group of cancer moms, I just wish I'd had it back in the beginning when I felt so alone.

--The thoughts of cancer never leave, I am reminded every day of the realities of cancer.  There is no escape.  I actually hate it more now than I did before, probably because I feel like it took so much away from us, especially from Erin.  It's like a year of her life is missing and that is hard to deal with. She has her 8 month clinic follow-up at the end of this month.  It scares me to death that we are going 2 whole months between blood test.  It just seems crazy to me, but I do have faith that all is well.

--Cancer helped us to understand more - to see the real big picture of what life is about.  We are more compassionate and sympathetic to others problems, we are more relaxed, and we enjoy our time together more than ever before.  We have a new focus in life that I am so grateful that cancer gave it to us.

--One thing that cancer really taught me was that everyone is on a different time line.  When we were in our deepest darkest times it was difficult to be happy when we saw others having success.  Then, it was difficult to feel complete joy when we were through with cancer while our many friends are still fighting the battle.  The reality is that there are times to rejoice and times to sorrow and we just can't be jealous of someone else's "time".

Now...on to the pictures!

Some Bear Lake fun with her cousin.  These girls are only 3 1/2 months apart in age, you can see Erin still has some growing to catch up on.


Enjoying a snack with her little friend who is a few months younger than Erin.  At Erin's 3 year old well-check we were glad to find that she is FINALLY on the chart for her height.  She went off the chart when she was about 6 months old and hasn't been back on it until now.  She is in the 8th percentile for height.  Her weight and head circumference are still off the bottom of the chart.  She is such a skinny mini.

Beach babe

All dolled up to play a little Pirates pinball.


Last week we had the opportunity to share our story and our feelings and advice about being parents who had a child with cancer during the filming of a cancer documentary. 


 Erin and Caleb chatting during some of the filming for the cancer documentary.  It was very interesting to hear Caleb and Cecily's thoughts on having a sibling with cancer.  The part that they both really talked the most about was when I shaved Erin's hair off.  They didn't think her hair was falling out, just that mom shaved Erin's head.  I guess there was a miscommunication in there somewhere.


The kids getting some energy out and playing together between filming.
Erin sharing some of her thoughts on cancer during the filming.  At first she didn't say much and got really shy, so John sat with her and asked her questions.


 It has been interesting to see what the kids remember about all that we went through.  Erin still prays every night "that Erin will be better."  Just the other day she excitedly brought me a picture that she had drawn and colored.  I said, "what is it?"  She replied, "the big O".  The big 'O' was the nickname for the CT Scan machine that we visited multiple times throughout Erin's treatment.  I think that the big 'O' has been the thing that has stuck the most in her mind.  She drew a big circle on the paper with a line going through the middle.  Pointing to the line she said, "that is the blanket" meaning the blanket that she used to be under when she went through the CT scanner.