The Royal Family's lives are the least of my concerns right now, but Lily was really excited about the wedding and wanted to stay up to watch it Thursday night- or should I say Friday morning?

 I didn't let her stay up, but we did watch the re-run on Friday evening. We decided to make a party out of it, including ridiculous hats, herbal tea and crumpets- well, buttered toast, anyway.

My favorite part? An excuse to use my brilliant English accent!



Lily nixed my first hat- it just wasn't quite appropriate for a spring wedding :)




She liked my second hat better- much more light and airy.
Lily's hat, a posh design including peacock feathers, was really quite elegant...



I knew something was going on yesterday! Lily ran a fever all last night. Neither one of us got much sleep, but Lily is feeling a bit better this morning. She didn't have any chemo last week and her blood counts have not yet dropped from this week's chemo, so a fever right now isn't as dangerous as it might otherwise be.

Please Send Prayers and Thoughts of Loving Kindness

Lily had another long chemo day on Monday (6 hours) and came home Monday night on IV hydration fluids. Tuesday's appointment was much quicker and Lily was feeling surprisingly good both days, but it all must have hit her today because I could tell she wasn't feeling well at all. Sometimes it is very hard to tell when she doesn't feel good because she rarely complains. Even if you come out and ask her how she is feeling, most of the time she won't admit to feeling bad. Maybe she thinks if she says she feels sick, it will make it more true?

Anyway, I knew something wasn't right when she didn't want to make fairies with her new mold she was so excited to get. She didn't want to draw or do any of the things she loves. Her appetite seemed okay because she kept asking for different foods as though she wanted to eat them, but then she picked at the food and barely ate anything. I broke down and asked her if she wanted a cookie. She said, "NO!" as if I had asked her if she wanted fried worms. I asked her if her stomach hurt? No. Head hurt? No. Nauseous? No. Tired? No. Sad? No.

I asked her if she was super brave? Yes.

Why does she have to be so tough? Why doesn't she cry and complain like I would if I were in her shoes? It is just not fair. It would be easier to bear if it made any kind of sense.

I need to learn to be more like Lily and not ask why; to accept without anger or complaint.

This week Lily did not have any chemotherapy treatments; after 5 consecutive days of chemo last week, she needed the break to improve her blood counts before going back next week.  On Wednesday we went to the clinic for a blood draw and her counts were extremely low even after the daily Neupogen shots I have been giving her. That night, Lily's finger that had been poked for blood labs was really sore and swollen and was obviously a bit infected- a source of concern considering she didn't have the white blood cells necessary to fight infection. Thursday morning we had an appointment for Lily to have another blood transfusion and the doctors cleaned and wrapped her finger and gave her some antibiotics.

Other than her sore finger, Lily has been feeling good this week and it seems like her energy is increasing. She hardly uses her wheelchair anymore. The only time she needs it is if we go for long walks. I was surprised by the amount of energy she had this week, considering how anemic she was before the transfusion.

Her appetite is more normal now too. She is a little more willing to eat a wider variety of things. She even has been willing to drink my fresh juice lately! I have to be super careful about bacteria- washing and peeling the apples, beets, carrots, etc. before I juice them, but it's worth the effort. When her counts are at their lowest, I cook all her veggies first...I will admit I have become a germaphobe lately!

Fun in the Sun

The cornhole tournament fundraiser was a huge sucess. Thank you to those who came out, we had so much fun!

We Love Crafts!!

There is going to be another fundraiser for Lily Saturday, May 7th. Thank you Lacey!

Lily's Drawings

If you know Lily, then you know how creative and artistic she is. Lately she has been drawing using Paint on the computer. I was pretty impressed since I doubt I could draw a stick figure using this application. I wanted to share some of her pictures. What do you think?




 Obviously, two of her favorite things to draw are aliens and fairies or sprites.

Love and Gratitude by the Heartful





How beautiful a day can be
When kindness touches it!
~George Elliston

My heart is so full of gratitude for the kindness of others!
I am so thankful for the kind-hearted nurses and doctors who have decided to make helping others their life's work.
I am thankful too for the many things both large and small that friends, family, neighbors and even strangers have done to help make this all bearable.







We had a very busy weekend with a Hopekids event scheduled Saturday and the Cut-a-thon fundraiser Sunday.

Hopekids is a super awesome foundation that provides free events to kids with life threatening illness and their families. A few weeks ago Lily was able to attend a Suns game and go down onto the court to meet the team. It was exciting for her to be there and we had a lot of fun even though we needed to leave after the opening because Lily got too tired.

Last Saturday another Hopekids event was scheduled at Bumble Bee Ranch in Prescott so we got a hotel room and drove up Friday night. Unfortunately the event was cancelled because of the cold weather that blew in Friday and Saturday. We didn't mind, though, because it gave us an excuse to get away and we got a chance to see snow! We had fun swimming in the hotel's indoor heated pool and when we woke up Saturday morning everything was covered in snow!

Our dirty old snow man.
There wasn't much snow left by the time we got a chance  to make this guy.

Brrrr! It's sooo cold!

Sunday was the Cut-a-thon fundraiser at Salon Boutique on Val Vista and Williamsfield in Gilbert. Michelle with 2 Dye For Hair Salon and other hairdressers at Salon Boutique worked hard all day cutting hair, and the proceeds of the donations went to Lily. These ladies are so wonderful! We also had a barbecue and bake sale going on and had a super fun day hanging out with good friends and family.

We are so blessed that Elizabeth came into our lives with her beautiful shining spirit!



Jake and Lily.  My sweetie pies.



Mr. and Mrs. Fantabulous. 2 supremely excellent human beings :)

It was so good to see Lily up and about and feeling good!

Team Lily!

Our dear friends

Mozzarella and hotdogs?
 Thank you sweet brother for being barbecue chef :)

Love you!

Sunday night Lily had a reiki/ reflexology session. We have been taking her for reiki about once a week for the past couple months and really like the meditative relaxation and peaceful feelings it gives. It was certainly a blessing that Luis came into our lives and we have lots of gratitude to him for being so caring and willing to help.

I was so glad that we got a chance to do some fun things over the weekend because this is another long chemo week with treatment every day Monday- Friday and at home IV hydration.  On Monday, Lily was at the clinic from 9:30- 5:30.

 You know you are used to long doctor visits when 3 hours (like today's visit) seems super quick and easy. I generally look like I am packed to go camping when we get there, I have so much stuff- food, drinks, barf bags, masks, hand sanitizer, blanket, sweaters, pencils, paper, books, games, movies, ipod, laptop, the list goes on and on...

Today at the clinic

Lily wasn't feeling so good during today's treatment and was sick to her stomach. She is so brave, though, and really doesn't complain. At one point she simply said, "I wish I didn't have to come back to tomorrow, I feel like I had enough for this week."

There is nothing like a hospital stay to make you appreciate the beauty of spring! Our neglected garden finally got a little care last weekend. We got some summer vegetables planted.




Lily's Sprites

Lily has been making these cute little "sprites" out of clay and feathers.

Another Fundraiser!!

Our amazingly awesome friends Theresa and Victor are having a fundraiser for Lily on Saturday, April 16^th.  The fun starts at 9 a.m. near Skyline Park at Coralbell Ave & 103rd place in Mesa.

There will be a barbeque with yummy food, inflatable jumpy thing for kids and a cornhole tournament. What (you may be asking) is a cornhole tournament?!? According to the ACA (American Cornhole Association, yes they have an association!) at www.playcornhole.org, cornhole is similar to horseshoes except that you use wooden boxes and corn bags instead of horseshoes and metal stakes.

If you have a facebook account, you can RSVP to the event here: http://www.facebook.com/?tid=1460536773186&sk=messages#!/event.php?eid=204084806269767

Thank you so much Theresa and Victor! And thanks to everyone who is helping with this event. We are truly blessed with wonderful friends and family J

I haven't written for a while because I have been so busy. Last week Lily was hospitalized for three days because she was running a fever and since then I have been struggling to get caught up with work, etc.

Lily's fever lasted less than a day and was low grade, so we weren't too worried. However, she did have low white blood counts that week and extreme fatigue, so we took her in right away to the doctor. The doctors at PCH follow the same protocol for all patients, which is a fever over 100.4 and low counts = hospitalization.

Lily had her first ride in an ambulance from the clinic to the hospital and by the time we got to the hospital, her fever was gone and did not return the whole time we were there. I was so thankful that she was not seriously ill, but also quite frustrated that her doctors did not want to release her until her blood culture came back negative for bacterial infection. I understood their rational: "better to be safe than sorry." However, I tended to disagree with the idea that the hospital is the safest environment for someone in this circumstance (she was obviously not seriously sick). Yes, in the hospital we had direct access to doctors and medication, but we also had direct access to lots of sick people and hospital germs. At the hospital, we also got lack of sleep and unhealthy hospital food, neither of which are good things for someone trying to heal. It is also stressful and depressing to be locked up, indoors without fresh air!

However, in distinct Lily fashion, we tried to make the best of it and look at the bright side of things. There was the play room with lots of games and crafts to do everyday. There were super nice nurses who are willing to give lots of attention. There was plenty of time to lie around watching movies. And there was the fact that Lily felt good enough to enjoy these things! Yes, we are learning more and more that there are so many things to be thankful for no matter what circumstances we find ourselves in. J