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)

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

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

30 Month Clinic

Erin's doing great!  Today we had a blood draw and an ECHO in Cardiology.  I'm sure Erin could be heard screaming during her blood draw.  She was in hysterics.  Each blood draw we do brings more and more tears.  It must be that as she's growing older she understands more about the pain and how much she HATE being poked.  The ECHO was a breeze and she was completely relaxed and watched Super Why while she laid there.  The ECHO results came back completely normal and her CBC came back normal!  Yay!  Here's to 2 1/2 years in remission for Acute Myeloid Leukemia.  

Take that cancer!

We got to the Oncology Clinic and she got started right away on making a Butterfly Mask.

She is a pro at the blood pressure cuff.

Then we got the usual Root Beer and Chocolate Pudding.  Chips have been outlawed in the clinic, so there was a little disappointment that she couldn't have the regular Cheetos too.

We finished the morning off with a family trip to Lagoon.  

Labs from 30 Month Clinic

White Blood Count 8.6 (normal 6.0-17.0)

Hematocrit 39.4 (normal 34.0-40.0)

Platelets 400 (normal 150-400)

ANC 4600 (normal 1500-8500)

Labs from 24 Month Clinic

White Blood Count 8.4

Hematocrit 39.3 

Platelets 250 

ANC 4000 

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

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

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 

18 Month Clinic

I took Erin to our local lab for this CBC on Tuesday and then on Monday we had her appointment with her Pediatrician.  She was dancing around the lab before the poke singing, "I'm gonna get a prize, I'm gonna get a prize."

Erin is the bravest 4 year old!  I didn't have to hold her down or restrain her, she just held her arm out for the phelobotomist.  She had a few tears fall from her eyes, but she never once cried out in pain.  I am continually amazed at her strength at all she understands and does.  She is my hero and I'm so proud of her.

Her blood work looks great!  

The funniest thing about this lab draw is that I forgot to do it on Monday.  I did it on Tuesday and then I forgot to get the results from the records office.  Primary Children's never called with the results and by the next morning the thought finally came that I hadn't heard what Erin's CBC results were.  I assumed that since I hadn't heard anything, she was still doing great in remission!  

Two years ago I NEVER thought I'd be this relaxed about cancer!  I am finally feeling like this isn't a part of our lives anymore and it's a great place to be!

I should also update that we are moving from our beloved valley.  My husband got a new job and we'll be moving 2 hours South.  This also might be why I'm not thinking about cancer because I have loads of other things on my mind.

Labs from 18 Month Clinic

White Blood Count 8.6 (normal 6.0-17.0)

Hematocrit 43.6 (normal 34.0-40.0)

Platelets 311 (normal 150-400)

ANC 3660 (normal 1500-8500)

Previous Labs from 15 Month Clinic

White Blood Count 9.2

Hematocrit 43.6

Platelets 317

ANC 4200 

15 Month Clinic

I took Erin to our local hospital lab this morning for her 15 month follow-up blood test.  We have a little deal with Primary Children's that we take her to our local lab every other visit.  It's just pennies compared to the big bills we get from Primary Children's and we don't have to give up an entire day's time to just get a blood test.

Erin was seriously amazing when they drew her blood, better than she has ever been.  She hardly cried.  She only whimpered a bit when they stuck her.  I held her on my lap, but I didn't have to restrain her from pulling her arm back.  We held hands and she told me she was brave and strong.  She got some sparkly princess stickers for being so good.

She is doing better today, she is still sore from both of her infections and I kept her home from preschool today to give her a rest.  She is having a nap right now and I'm sure the extra sleep is helping her little body heal.  Her blood counts look good, it's always so wonderful to get results that ease our minds about her cancer returning.

Labs from 15 Month Clinic

White Blood Count 9.2 (normal 6.0-17.0)

Hematocrit 43.6 (normal 34.0-40.0)

Platelets 317 (normal 150-400)

ANC 4200 (normal 1500-8500)



Previous Labs from 12 Month Clinic

White Blood Count 8.6

Hematocrit 41.6

Platelets 258

ANC 3600

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

10 Month Clinic

Acute Myeloid Leukemia is still out the door!  Erin is doing great!  Tomorrow we'll see our Pediatrician to get more results, but I thought I'd post her blood work that we had done today.

After getting her blood drawn at the lab today she said, "I'm never doing that again."  She has gone from fearless to super fearful about getting her "poke."  I hate all that she has had to endure, and I feel sad when she gets upset about getting her blood drawn.  She screams when they take her blood and cries "stop it, stop it," but she doesn't pull her arm back or wiggle, she just sits still.

Labs from 10 Month Clinic

White Blood Count 7.7 (normal 6.0-17.0)

Hematocrit 44.5 (normal 34.0-40.0)

Platelets 252 (normal 150-400)

ANC 2600 (1500-8500)

Previous 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 150-400)

ANC 1800 (normal 1500-8500)

Want to know a good comparison to know how sick Erin was when she was diagnosed with cancer?

Her labs from June 1, 2010 (the day she was diagnosed with AML)

White Blood Count 11.6 (normal 6.0-17.0)

Hematocrit 26.6 (normal 34.9-40.0)

Platelets 11 (normal 150-400)

ANC 900 (normal 1500-8500)

1+ abnormal Hypochromia

1+ abnormal Lymph

And a footnote that read, "Approximated 12% of nucleated cells in the peripheral smear are highly suspicious for blasts (cancer cells)"  

Scary stuff huh?  Abnormal cells and blasts in the blood! Can you believe her platelets were 11?  No wonder she was covered in bruises.  I am so thankful that she is doing well.  Erin says, "I am happy there isn't cancer in my body anymore."

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

6 Month Clinic...still in remission

We've been done with cancer for 6 months now.  Wahoo!  Erin is still cancer free!  The most critical time of relapse is in the first year off of treatment so we are halfway there.  Erin was even cleared to only come in for visits with her Oncologists once every 2 months instead of once a month.  What a relief!

Tomorrow Erin will get some of her 2 year old shots that we had to skip because of her cancer.  She will be allowed to get her live vaccinations (like chickenpox and MMR) in December.

Erin psyched herself up for her "poke" in the hand to draw some blood.

Everything was pretty uneventful, 

which is a good thing.

Our son had a fever the other day, just a fever with no other symptoms.  Erin must have come down with it too because she had a low grade fever today too.  Her counts also reflect some of that as they are more skiwompus than usual.  If Erin's leukemia were to relapse then we would see a decrease in her platelets.

Labs from 6 Month Clinic

White Blood Count 13.4 (normal (6.0-17.0)

Hematocrit 38.9 (normal 34.0-40.0)

Platelets 220 (normal 150-400)

ANC 11,700 (normal 1500-8500)

Previous Labs from 5 Month Clinic

White Blood Count 4.4 (normal 6.0-17.0)

Hematocrit 39.0 (normal 34.0-40.0)

Platelets 216 (normal 150-400)

ANC 2300 (normal 1500-8500)

5 month clinic

I started the day with my usual nervous feelings as Erin and I made the drive to Primary Children's Medical Center.  That drive is all to familiar, but it is also so much like going to visit an old friend.  We had only been in the building for 5 minutes when we ran into two of our cancer fighting friends Brinely and Ellie.  We are part of the greatest support group of moms who have kids with cancer.  Seriously, I couldn't do this without them!

Erin ran into the lab to get her blood drawn.  She will forever amaze me.  How many 2 year olds run in a lab (knowing they are going to get stuck with a needle) right up to the chair, jump in and exclaim, "I'm going to sit here alone."  In the end, she did let me sit in the chair with her on my lap, but she was so brave the whole time.  As the nurse was getting ready to insert the needle into the top of Erin's hand my little Erin said, "I am brave and strong."  Yes, Erin.  YOU ARE BRAVE AND STRONG!

Sitting in the chair "all by herself"

We made our way up to the fourth floor to the Hematology/Oncology Clinic.  I was surprised to see so many other patients there.  It is a place of reality.  Every kid in there has some type of cancer.

Erin was really crabby at this point.  She decided that she needed to throw a tantrum on the floor because, in her words, "I NEED A ROOT BEER!"  Is she trained or what?  She thinks hospital=root beer.  I should have taken a picture of this.

She did calm down a bit to do a craft while we waited.

This video will show you just how accustomed she is to the whole clinic routine.  She could do it with her eyes shut.  I think she is actually bored while waiting to get her blood pressure taken.  She has come a ... long ... way.

We had a great visit with Dr. Verma (pictured with Erin) and Dr. Fluchel, Erin's Oncologists.  Erin's blood work looks good (see below) and she is still in remission!

Showing Dr. Verma how to listen to her heart.

Labs from 5 Month Clinic

White Blood Count 4.4 (normal 6.0-17.0)

Hematocrit 39.0 (normal 34.0-40.0)

Platelets 216 (normal 150-400)

ANC 2300 (normal 1500-8500)

Previous Labs from 4 Month Clinic

White Blood Count 5.3

Hematocrit 41.8

Platelets 215

ANC 2700

I always feel such strong emotions on the days that I take Erin back to the hospital.  Today was a particularly hard day because it was also the day of Tanner's viewing and my emotions have been so tender.  When we entered the room where Tanner's casket was and where his amazing parents were standing, there was the most wonderful feeling of love and peace in that room.  We happened to be in line to witness a very special sacred moment when two mothers, who just 6 weeks apart had lost both of their teenagers to AML embraced in the most loving, close, understand hug I've ever seen.  Time stopped as these two women, who both knew exactly how it felt, comforted each other. 

 

I just kept thinking all night that there is a "time" for everything.  A time to mourn, a time to be happy, a time to love, a time to be loved, a time to give and a time to receive.  A time to be diagnosed with cancer.  A time to be done with cancer.  We are all in differing stages of "times".

 

I came home to a clean house and the kids tucked into their beds (we have THE BEST babysitters).  The kids were all awake reading books in their beds.  I had to hold each one for much longer than usual as I kissed them good night.  I feel so much love for my children and I cannot begin to understand how it would feel to lose one of them.