The result of Lily's PET scan was as fantastic as her MRI. There was no sign of the tumor in her foot and the only area with uptake was in her shoulder. In comparison to her previous PET scans which showed uptake in her foot, knee, legs, pelvis, spine and shoulders, this is an amazing improvement. 

Lily has come so far in such a short amount of time and we are so happy and thankful that she is doing so well. So many people from all over the world have sent their prayers and loving thoughts our way and we feel the strength and power of their love.  All of this positive healing energy has helped as surely as the chemotherapy has.

We've been working in the garden this week. We planted melons, tomatoes, squash, eggplant and peppers. Meanwhile, our zucchini plants are coming along nicely and we have been harvesting beets, carrots, chard, onions and garlic.

The hospital gave Lily a wig today.

At first she really wasn't into it. She never has been shy or embarassed about her bald head, so why would she need a wig? In fact, she keeps such a postive outlook, one of the first things she said when she started loosing her hair was, "Well, at least I have a nice round head!"

But I think she discovered how fun it can be to wear a wig, and we think it looks cute too :)

Wonderful News!!

Today Lily had an MRI of her foot and the results were amazing! Her doctor said he couldn't even see the tumor it had shrunk so much!



The scan from January; the white mass in the middle of her foot is the tumor.



Today's scan; we viewed the images from the bottom of her foot all the way through the top and the tumor was gone. This image is from near the top of her foot where a small amount of tissue may remain.

Benefit Show June 17th

We are so grateful and excited about the benefit show planned for Lily. This is going to be an amazing night!!
A big thank you to all who are involved in making this happen. We love you!

Happy Friday

Yipeee! It's Friday and we made it through the week! Lily has been feeling much better the last few days and now has a couple weeks off from chemo. We have a few fun things planned for the upcoming week, but mostly we will just stay at home and relax. Lily's blood counts will likely drop next week and we have an appointment scheduled for Wednesday to get blood work done.

The date for her MRI is May 23rd and she will have a PET scan, echo and EKG on May 25th.

This week is another loooong 5 day chemo week. Lily gets two chemotherapy drugs each day- Ifosfamide and Etoposide and comes home with a hydration pack and Mesna to help protect her bladder from the chemo. She has been tired and sick off and on the last few days. There are several anti-nausea medicines that she takes, but she really doesn't like taking them either. One causes headaches and another "makes her feel funny." Her counts are low too, so that also contributes to her fatigue. She is scheduled to have a blood transfusion on Thursday on top of getting chemo that day. Friday we will meet with the naturopathic doctor. Next week, Lily won't have any chemo so that she can recover from this week. She will have daily neupogen shots to help get her white blood counts back up, though. In two weeks, it will be time for another evaluation and Lily won't have chemo that week either. She will have another PET scan and an MRI of her foot. At that point, her doctors will recommend her radiation treatment plan.

To help raise her spirits this week, I agreed to build Lily a new bigger and better dollhouse. We went to Hobby Lobby and she picked out the biggest one they had. She was so excited and now has something fun to look forward to when she comes home from the doctor.

I've been super busy with work, but that should be winding down a bit in a few weeks. I am really looking forward to Lily having a few weeks off from chemo too, although there will still be several doctor visits during that time. I am NOT looking forward to the idea of Lily getting radiation treatment. This is not something that we have yet experienced and the whole idea of it really freaks me out.

Today; helping pick veggies for dinner

Four Generations of Love!

We had a lovely Mother's Day on Sunday and were able to spend some time at Grandma J's house :)




 

Thanks to everyone who helped support Lily with the craft fundraiser. We had such a fun day creating Mother's Day crafts!

A special thank you to the Shupes for planning and organizing everything. We love you!!

Fun Fundraiser Tomorrow!

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!