It's so hard for me to wake Lily up to go to the doctor in the mornings. I hesitate over her bed and will myself to have the strength to do what needs to be done. I wake her with a kiss and a smile and a "how do you feel?" She almost always smiles back and says "good," and although sometimes I'm not so sure, her waking up with a smile really helps to make the morning a little easier.

Some mornings are harder than others. When I think about the fine line that we walk between the chemotherapy drugs helping and hurting my beautiful baby, I feel like my heart is breaking. I can usually find the strength to be centered and positive because things are going so well right now, but this morning, as I hesitated over her bed, I glanced at a pile of nearby baby pictures of Lily. The one on the top was of her when she was only a few weeks old and I burst into tears. It doesn't seem that long since I held that sweet tiny baby in my arms, and yet the past 5 months have felt like an eternity. We've felt so many emotions and have learned so much about life and love and what's truly important.

The padawan braid is no more! It's official, Lily is now a Jedi Master.

Lily held on to it as long as she could, but the "braid" had gotten so tiny it wouldn't stay braided and instead turned into a small knot of hair that couldn't be brushed out. I finally convinced Lily to let me chop it- as long as I pretended that the scissors was my lightsaber :)

It's been a long week for Lily with chemo and radiation treatments every day, but thankfully she is doing well so far. Her appetite and energy have been relatively good all week.

She was so happy for the weekend, though- no doctor visits and her port de-accessed. When Lily's port is accessed, it's uncomfortable and she has to make sure she doesn't get it wet. With it finally out after the whole week, the first thing she did when she got home was go swimming with our neighbors. Then she had a sleepover with her cousin. Tomorrow will be more swimming at Jessy's house.

Next week Lily has only one day of chemo and the following week she gets a break from chemotherapy completely. Radiation will still continue for the next few weeks, however.

A BIG Thank You!

Our hearts are full of gratitude for all those who contributed and helped with Lily's benefit concert. What an amazing night - full of fun, love, good music and great people!

This Friday is Lily's benefit show at the Sail Inn in Tempe. Mergence and Black Carl will be performing- two of our absolute favorite bands!

The show is late, so Lily won't be there. Instead she is going to be hanging out with Grandma and playing with her cousin Shae.

Time for a little pre-party party.  Let's throw on some tunes and get our groove on...this girl loves to dance!!

The last few weeks have been difficult. I haven't had the time or inclination to write.

Our beloved Papa passed away June 3rd. Both Lily and I were able to be with him and say goodbye to him that day. He had lived a long and full life and it was time for his beautiful spirit to leave his old frail body. He passed in his home surrounded by his loving family.

I was glad Lily was able to visit with him that day because she was too sick the next week to be able to attend his funeral. Out of all the chemotherapies she has had so far, Irinotecan seems to have the worst side effects on her as far as making her sick to her stomach, and this is a chemo that she gets for five days straight. It's already been a week and a half since the last dose and Lily is just now getting over the diarrhea and loss of appetite it causes. She hasn't had this chemo since the beginning of her treatment when she was so sick and lost 10 pounds in two weeks. Sadly, over the last couple of weeks, she lost the 5 pounds that she had slowly gained back since that time. She has also had 3 doses of Vincristine over the last 3 weeks and 7 radiation treatments to her foot.

Nonetheless, in the last few days since her stomach has been feeling better, she is back to her peppy self. She doesn't want to sit still and roams around the doctor office talking to everyone. On Monday, the doctor was surprised because although she wasn't acting like it, her hemoglobin was low. She will be getting a blood transfusion today in order to bring it back up.

I'm dreading next week which will be another 5 days of Irinotecan along with radiation treatments every day. Lily has lost more hair but still has some straglers hanging on. We have never cut her hair and she still has a tiny braid of long hair that keeps getting smaller and skinnier. We call it her padawan braid and tell her that when it is finally gone it won't be so bad because it will mean she is a Jedi Master. She likes that idea.

I've been so busy with work and doctor appointments that it is hard to find the time to do anything else (like clean my house or pay my bills- woops!). I'm so looking forward to my month off starting next week! I'm also looking forward to Lily's benefit show on Friday.

So much for Lily feeling well. She was up all last night with stomach pain and vomiting. We rushed to the clinic first thing in the morning so that she could get medicine for her pain and nausea and fluids through her port. She felt better afterwards, but hasn't wanted to eat much today. Poor girl. We've got two more days of this.

Lily is getting 5 chemo infusions this week and because of the holiday Monday, she has appointments Tuesday through Saturday. So far this week she is doing really well- she has had energy and a good appetite.

Today we spoke with the radiologist, who recommends treating Lily's foot with radiation therapy. A few months ago when we met with the radiologist, she recommended treating Lily's foot as well as all the areas of metastasis. This was very upsetting because the areas with disease were so extensive and could have caused Lily many serious long term side effects. However, because Lily's most recent scan shows almost no metastasis, her doctors have decided that radiation only to her foot is the best course of action and we are so relieved!! I'm still nervous, but radiation to Lily's foot shouldn't cause too many problems and we do want to make sure that the cancer in this area is completely gone. Our other option is surgery, but the surgeon has said that he would not be able to be completely sure of removing all cancer cells and that more than likely Lily would lose at least a couple toes. Even with surgery, radiation to the area is recommended. She has an appointment with another radiologist tomorrow.

Meanwhile, we've been working on the dollhouse when we can. Lily gets so excited each time we add another part. We just got the roof up and next we will be adding windows. I realized after the last dollhouse how much easier it is to paint the pieces prior to putting them together.