Renaissance Festival Fun

Today we were determined to go to the Renaissance Festival rain or shine! Lily has been looking forward to the festival all year and since she has been feeling good we thought it was a good time to go. Monday she starts a new round of chemotherapy and her immune system will be suppressed; she won't be able to be around large crowds for a while.

Actually, the truth is we wouldn't have gone if it had been too cold or rainy. Fortunately, the weather decided to behave and stay nice!



Lily's new pet dragon





Phillip's new best friend



We kept our visit short, but it was fun to get out. Thank you mom for having Jacob over while we went!

Send your prayers and good thoughts Jacob's way. Last night we took him to urgent care because he had  suspiciously spotty tonsils and a sore throat. Our suspicions were correct- he had strep throat. He has been on antibiotics and is feeling okay, no fever or other symptoms. Poor guy :(

Good News

We talked to the doctor yesterday and received the results from the PET scan. Good news! The tumor in Lily's foot has shrunk and the cancer that has spread to her bone marrow has diminished.  You can visually see this in the PET scan.


The darkened areas show uptake and indicate the presence of cancer;
ignore the darkened areas of her organs.

 


We are so thankful that Lily is responding to the treatments. We hope and pray that she continues to do so.

Make a Wish!

Phillip's work has been amazing. His co-workers have been giving out bracelets that say, "Stay Strong Lily Lopez" for a donation. They also folded 1,000 paper cranes! A Japanese legend says that by doing so, a wish may be granted.

 

1,000 paper cranes! I love it.

Thank you for everything!



It is already week 6 of Lily's treatment: evaluation week. She won't be having any chemotherapy treatments and will have a PET scan tomorrow at Phoenix Children's Hospital to evaluate how well the treatments are working. We will be meeting with her doctor later in the week to get the results. We hope and pray that there has been no further spread and that the cancer has diminished.

The best and most beautiful things in the world cannot be seen, nor touched, but are felt in the heart. ~ Helen Keller

I continue to be amazed at the thoughtful loving kindness of others.  So many people have reached out to help or to show that they care. You know who you are! All I can do is say thank you from the bottom of my heart.

I haven't wrote for a while, partly because I've been so busy but also because I felt like I didn't have anything good to say. Last week was rough. With chemo everyday, Lily was feeling very unwell and on top of that, her spirits were low. She was feeling sad and I can't blame her. She has been through so much, and because she has been so sick, she hasn't had much time to grieve. 

This week, however, she is finally feeling better! She still has occasional bouts of nausea, etc, but overall she is much improved. She only had a half  dose of Vincristine on Monday and on Tuesday and Wednesday she visited the naturopathic doctor. He gave her vitamins and amino acids through her port IV. Afterwards, she seemed to have much more energy. She has been up walking around and Wednesday was finally willing to leave the house for something other than the doctor. We went to Grandpa's birthday dinner. Everyone was so happy to see our Lil more like herself. She was excited to wear something other than pajama pants and we realized that the last time she put shoes on was the night we went to the hospital a month and a half ago!

On our way to Grandpa's house and not (!) in a wheelchair

Our goals for the rest of the week are:
A) Go nowhere near a doctor's office
B) Sew some fabulous renaissance garb because Renaissance Festival here we come
C) Eat
D) Eat some more

A big thank you to my fellow teachers for thinking of Lily and running for her at London's Run.

Whew! What a week. We're all feeling pretty worn down around here. These last two weeks with only two days of chemo were supposed to give Lily some time to build up her strength because we are back to chemotherapy every day next week. Unfortunately, it hasn't worked out that way. Lily has continued to have stomach pain and lose weight. She is usually in pretty good spirits throughout the day, however, and has been  working on Valentine's crafts and doing some sewing, but at night she has a hard time sleeping and experiences a lot of pain and numbness.

 Lily has also started losing her hair by the handfuls. I am surprised at how easily she has accepted this as just part of the process.  In the past, she never wanted her hair cut and always liked it down and long. Unimportant things like this just don't seem to matter any more.

 It is obvious from the severe symptoms that Lily has been having that she is particularly sensitive to the Vincristine chemo. The doctor plans on cutting back her dosing for now and hopefully that will help with her stomach pain.

Lack of sleep has sure worn me down; I've had a sore throat this week and it's been hard to stay positive and have the energy to deal with each day. I have also started back at work this week, but am so thankful that I have the most amazing job and get to work from home.

We have been visiting the naturopathic doctor and he has been giving Lily vitamins and amino acids through her port IV. Lily also started physical therapy this week to help get her walking again without depending on her walker.