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.

Monday, October 31, 2011

Eagle Scout Project in Honor of Erin

This past year two young men, who live in our area, devoted much time and effort in doing their Eagle Scout Projects in honor of Erin.

Eagle Project #1
Ben Jewkes planned and organized a toy drive for Primary Children's Medical Center (where Erin was treated for Acute Myeloid Leukemia).  He took flyers door to door with requests for new toys in honor of Erin.  Here he is with some of the donations people left in bags on their doorsteps.


He sorted and boxed up all the toys.



He received over 300 toy donations and took them to Primary Children's.


Although Erin was through with treatment at this time, I wanted to post a picture of her playing with some toys that were donated to Primary Children's that she was given while in treatment.  There were some really difficult days that Erin endured, some days she would sob into her blankets and be in so much pain and feel so sick.  These days it was especially wonderful to get a new toy donation brought into her room.  At Christmastime, it seems there were so many toy donations, we got one almost every day.  



These cancer kiddos (and other sick kids at Primary Children's) really benefit from these donations.  When Erin goes to the lab to get poked for her blood draw or whenever she would get an ECHO or EKG or any other procedure done at Primary Children's she is given a toy as a reward for being brave.

She especially loves getting mini beanie babies like this lucky dog.


One of Erin's much played with toy donation surprises was a princess skirt and wand.

**---**---**---**

Eagle Project #2

Trevor Jewkes focused his Eagle Scout Project on making dolls and blankets for Primary Children's Medical Center

With the help of friends, family, and fellow scout Trevor make 28 quilts ranging from baby to twin size.



They also made 10 fabric dolls complete with 38 hospital gowns.


He turned the blankets and dolls in to Primary Children's.


Erin received many blankets during each of her rounds of chemo. She got this pink flower fleece blanket just days after she was diagnosed with AML.  It still sits on her bed and she regularly snuggles in this blanket.


One fun blanket she got during a hard time with chemo was this "blow pop" blanket.


Here is Erin playing with a cloth doll, like the one's Trevor made.  The Child Life Specialist in the cancer ward gave Erin this doll (that someone made & donated) for her to "practice" the dressing changes on.  We used to do weekly dressing changes on Erin's Broviac (tube-ees as she called them) in her chest and it was often very traumatic for Erin.  It really helped her to play with the dressing change kits on her cloth dolls.  We even cut one of the dolls open a sliver and inserted a Broviac tube-ee into the doll so she could clean the tubes, just like we would clean her tubes.  It was very therapeutic for Erin to practice these procedures on her doll and it helped her cope with the pain she had to go through.


We are so grateful for all the people who have donated toys and their time in making blankets and dolls in honor of Erin.  Having your child diagnosed with cancer is very heart-breaking and the kindness of a whole community pulling together to lighten those burdens is so beautiful.  We want to thank Trevor and Ben Jewkes for their commitment to Scouting and for their thoughtfulness in honoring Erin through their projects.  We also want to thank all of those who have donated in one way or another in honor of Erin.

Thank you!

Saturday, October 29, 2011

You want to visit Chili's on Nov. 7th

**Attention**
Logan
West Valley
Sandy
American Fork
Layton

This is your chance to help Erin!
Chili's is willing to donate 15% of sales to HopeKids!

Monday, November 7th
3:00pm - 10:00pm
 
**For HopeKids to get 15% you MUST print this flyer and give it to your server** 

HopeKids offers continuous hope and support 
to families with a child with cancer 
or other life threatening illness.
A big thanks to Chili's!


Sunday, October 23, 2011

Entertaining Video on Being a Bone Marrow Donor

I found this video through facebook.
It is entertaining and very informative about the whole bone marrow donation process.
The Anthony Nolan Corporation is not where I'm registered, but the video really depicts what joining is all about.  Just a note...the video shows that you spit into a spit kit, but the National Bone Marrow Registry (where I'm registered) has you do a cheek swab.  Oh, and you most likely will not be getting a train to London to do the bone marrow donation (although, that would be nice).


Want to know what joining the registry is about?
Watch this video.....

Saturday, October 22, 2011

Make-a-Wish Royal Princess Ball

A little behind schedule, but still worth the wait.

Last June, Make-a-Wish threw a Royal Princess Ball for Erin.
It was a farewell party, sending us off to Disneyworld to Meet the Princesses
Renee Lyman (Erin's Wish Granter) escorted the kids outside.



We had a carriage ride around the parking lot.




Some of our princess friends came along.


Erin in her princess gown.



Our family and Erin's cake






Erin got a surprise visit from Prince Charming (our good friend Cris)


And a surprise visit from Cinderella (our friend Shay)



Our friend, Brenda Hult, who made Erin's dress.


The Royal Gathering


Cookie decorating!









The Sky View Student Body Officers who helped our wish granters pull the whole thing together.


**A special thanks to Betsy Thompson for the pictures!**

Tuesday, October 18, 2011

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."

Monday, October 17, 2011

More Relaxed

Time can be healing.  At least, I think so.  Tomorrow Erin is having her 10 month follow-up appointment.  I can't believe it's been 10 months, it is so wonderful that every new beautiful day we get further and further from cancer.  This time around, I'm pretty relaxed.  I still think about Erin's cancer coming back, but it's less harsh on my heart and mind.  I do think about the statistics often: 50% of children with AML will relapse.  We now have a good handful of AML friends that we've grown to love and admire.  We have lost some and have many others who are waiting out that year when you wonder if you're child is going to be part of that 50% relapse statistic.  We hope and pray for all of our cancer fighting friends, especially right now as we are praying for Jacob who is having some major complications from his bone marrow transplant.  Please remember him in your prayers today.

We will be taking Erin to our local hospital on Tuesday to get the blood work done and then Wednesday she has an appointment with her Pediatrician to go over the routine stuff like blood pressure, height, weight, etc.  We feel like Erin is doing very well and it is much easier to do her care locally rather than all that hullabaloo of going to Primary Children's every follow-up. 

It's amazing to be at this end of the spectrum.  When Erin was so sick and we were so worried during her cancer treatments it was nearly impossible to imagine normal life again.  We feel so blessed and so thankful to have her happy lively spirit among us.

Saturday, October 8, 2011

The Creating Hope Act

Please feel free to pass this on

The Creating Hope Act is...
"...legislation that would incentivize pharmaceutical companies to develop new drugs for rare pediatric diseases, such as childhood cancers, that have not been developed in decades because they are not profitable ... the Creating Hope Act of 2011 ... would expand the cost-neutral Food and Drug Administration priority review voucher (PRV) program, allowing pharmaceutical companies to expedite FDA review of more profitable drugs in return for developing treatments for rare pediatric diseases.  Since 1980, the FDA has approved only one drug for treatment of childhood cancer, compared to 50 for adults."
(Read more HERE on the Childhood Cancer Caucus Website)

Oh, boy! This is something we should be shouting out on our rooftops.
Finally, finally, finally something can be done to get more treatments for childhood cancer.

Our own Utah Representatives are not listed as supporting the the Creating Hope Act, but with a minutes time we could each hopefully get Utah's representatives in support of this important Act.  There is an easy on-line form that you can "fill-in" with a few sentences about why this is important to you and have e-mailed directly to our Representatives.

to get to the online "fill-in" form


 
You can read the House Bill HERE

Thursday, October 6, 2011

You Know You're A Parent Of A Kid With Cancer When...

You know your a parent of a kid with cancer when... 
(I got this idea from Dani's post HERE and altered these to things that happened to us)

1. Kids with hair look kind of strange to you
2. Your pockets, purse, and other nooks and crannies are full of sanitizing wipes
3. Waterproof mascara becomes a necessity...
4. ..then mascara and any other make-up becomes something of the past
5. You can sleep anywhere, and anything that reclines more than 15 degrees looks "comfy"
6. You don't realize the Sharps container is on the kitchen table until half-way through dinner
7. You enjoy the drive at 5am to the hospital because there aren't any other cars on the road
8. Your kid could give you precise directions on how to get to the hospital
9. You do your hair and your Oncologist doesn't recognize you
10. You hear a truck back up and you think the IV is beeping
11. You are so proud when your baby finally gets hair (and she is 2 1/2!)
12. Your IV supplier knows the way to your house without directions
13. Your 3-year-old's baby doll is always throwing up because she has leukemia too
14. You can maneuver a double IV pole while pushing a kid in a little tykes car on a tour of the cancer ward, and make it back to the room before the low-battery alarm sounds and the kid has to pee.
15. The nurses stop responding to the IV alarm knowing you'll fix it
16. Your 2 year old holds completely still while her arm is getting squeezed to death by the blood pressure cuff
17. You child's daily conversations include "leukemia" "cancer" and "chemo"
18. Your two year old knows where all the medical equipment goes, and how to use it
19. You can eat with one hand while you hold the barf bucket with the other
20. You keep a bag packed at all times like your 9 1/2 months pregnant
21. Your child's bedroom looks like a Toys R Us store
22. The pharmacy techs ask you how to spell that medication, again
23. The pharmacy tech says, "your 7 day medication (that they pronounce wrong) will cost $700, there isn't a generic form, do you still want me to order that?" You don't blink an eye and say, "of course."  
24. You can get to church early because you have one less head of hair to comb
25. There are four new Mercedes in the doctors' parking lot due to your child's payments
26. You can communicate with your family practitioner in medical lingo
27. You take two dressing change kits everywhere you go
28. You can read the blood work reports better than your nurse
29. You have more meds in your cupboard than food
30. You have more IV meds in your fridge than food
31. You decorate the green chemo masks with silly faces
32. None of the security in the hospital ask you for your ID anymore
33. Your main source of nutrition comes from Tylenol and Pepto Bismol
34. You wrap your daughter's birthday presents with medical tape
35. Your child is more familiar with CT scanners and MRIs than the portrait studio
36. You don't have to ask, "What's that mean" to the previous 35 items (or the next 35)
37. You know that the CBC results will either make or break you
38. You hear yourself say, "I'll buy you anything you want" at least once a day
39. At any get-together you get asked by more than 30 friends "so, how is your daughter doing?"
40. You really think this list is funny, when most normal people either don't get it or start to cry
41. When a Radio Flyer wagon is considered an essential transportation device
42. When you walk down the hall in your house holding one of your other kids and feel odd because you're not trailing an IV pole with the other hand
43. When her ANC is something that determines how well your day is going to be
44. You make new friends, in your pajamas, hair askew, at a breakfast cart
45. When people stare at your child and ask if they are a boy or a girl
46. Your kid takes more medications than your grandma
47. You can reset the IV meds overnight, in your sleep, every 30 minutes without waking up once and still call it a good nights sleep
48. The "CK" on your tee shirt stands for Chemo Kid, not Calvin Klein
49. Your child receives so many toys while in the hospital that at Christmas time you can open your own toy store
50. When every little thing can make you cry
51. When people call to see how you're doing and they start crying the minute you say hello
52. You spend most conversations telling people, "it's okay" when really you want to shout out that you hurt really badly inside
53. When your child is ecstatic because they are getting a poke in the arm and not a bone marrow aspirate
54. You can make a variety of arts and crafts out of hospital supplies
55. You can only get your daughter to drink from a 10ml syringe not a cup
56. When the doctor finally enters your room and finds you and your child with latex glove powder around your mouth from blowing up the gloves
57. When it's time for your 2 year old to have her vital signs taken and she lifts her arm and sticks out her foot without crying or fighting
58. You have a collection of pink "throw-up-buckets" in every room of your house
59. You think that root beer and Cheetos is a "nutritious meal" because it's all she'll eat
60. Your reading materials consist of insurance statements and bills
61. Your daughters hair finally grows back and no one in the cancer ward recognizes her anymore
62. When your bookshelves have more childhood cancer books than potty books
63. You have forgotten how to cook because you spent the last year eating in a cafeteria and having meals brought to your home by kind neighbors
64. Your daughters hair is starting to grow back and a stranger says, "my daughters hair took forever to start growing too" and you say, "oh, your daughter had chemo too" and they look at you very confused and say, "no"
65.Your daughters hair is growing in like a 70's Beetles shag.
66. You wish there was as much GOLD as there is PINK
67. You have a huge collection of headbands and knitted hats
68. The feelings you felt the day your child was diagnosed are just as real today as they were then
69. You have to explain to your kid that cancer is not something every child usually deals with
70. Your 3-year-old has her own blog