Lily has been fighting a horrible cough and congestion the last few weeks and even ran a low grade fever this past week. Her white blood counts were extremely high due to the daily Neupogen shots I had to give her. When they are high like that, she feels sick and achy.

This week, even though we continued the shots, her white counts came crashing down because of the chemo. Her hemoglobin and platelets were also low, which makes her feel weak, tired and headachy, so today she had a blood transfusion. Although she has had several transfusions of hemoglobin, today was the first time that she needed a transfusion of platelets and she ended up having an allergic reaction with hives and itching. Today was also the first time I wasn't at the clinic with Lily during a blood transfusion.

I am so thankful to my mom for volunteering to go with her, as I had a lot of work I needed to do. It was a long day for them both- 6 hours! Thank you momma.

Today's transfusion should help Lily feel better and she has next week off from chemo for evaluations.

We've been so busy lately!

Last week Lily had chemo Monday and Tuesday and you would think she would be too tired and sick to do much afterwards, but surprisingly, very little slows her down these days. She stayed busy hanging out with friends, swimming, and last Saturday we had the clothing drive and John & Jen's anniversary celebration.

Lily had so much fun at the anniversary dinner and afterwards swimming in the hotel's pool. Everyone was so happy to see her there, full of energy, and having such a good time.

This week she only had chemo on Monday, but her blood counts dropped from the previous week's chemo, so she had a blood transfusion on Wednesday and what feels like endless Neupogen shots to bring her counts back up.

Tuesday was grandma's birthday. We had a birthday fiesta at our house:

Thursday we decided to start building a chicken coop (Thank you Marcus for inspiring us):

And Friday we had another tea party with one of our favorite fellow tea partiers, the Lovely Lacey :)

Next week will be a long chemo week. Lily will be getting chemotherapy everyday, Monday- Friday, with the home hydration pack every night.

I'm back to work, so the last few weeks have been busy. I'm so thankful that I am able to work from home. I just might have the best job ever!

Lily finished radiation to her foot and the skin in that area is healing very well. In the time that she was off from chemo, her hair also started growing back. After 5 days of chemo last week and 2 days next week, it probably won't last, but she looks really cute right now with a fuzzy head. Her white blood counts are low this week, so she is cooped up at home and I have to give her daily shots to get her counts back up in time for next week's chemo. She's so resilient, though, it's amazing! She is full of energy and literally bounces around the house (on my aerobic ball).

One of my fellow teachers put together another fundraiser for Lily!  Are we not incredibly blessed in terms of all the support we have received from so many people? Your love and kindness keeps us going! Thank you Cameron! Here is the info:

The “We Love Lil Clothing Event”!!

We are holding a “Back-to-School Clothing Drive” on August 6,  from 10: 00am-2:00 pm for Lily Lopez.  The Clothing Drive will be held at the LDS church located on 1010 S Recker, between Warner and Ray.

In order to help offset the cost of her treatment, and try and ease the burden of her family, we will be holding this clothing drive.  It will be really easy to participate.  As you clean out your children’s closets in preparation for school, please bring clothing that you no longer need to Cami Kistemann’s house, 2895 E Cathy Drive, Gilbert, AZ 85296.

We would like to have all donations before August 6.  If, however, you also want to bring your clothing to the church on the day of the event (August 6), it will be happily accepted at that time.  We will be selling the clothing by the bag.  All the clothing you can stuff into a bag provided for $5.00.  Please donate your clothing, and come to buy a bag or two.  Even if you don’t need the clothing, please come and lend your support.  Please forward this to anyone who you know would like to participate so that we can make this beneficial for everyone.   If you would like to help out further still, please contact Cami Kistemann at 480-626-1405. 

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

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!

Lily had the blood transfusion today without any problems. Actually, she slept through the whole thing, which took about 3 hours.

Afterwards, she had chemo. That transfusion took a good 3 hours as well. In all, we were at the clinic for nearly 7 hours today.

Lily has been such a trooper all week. She never complained even though every day she had to get up early, spend half the day at the clinic getting treatments and go home attached to a heavy hydration pack. The constant fluids meant that she was waking up several times a night to go to the bathroom. This, combined with the fact that her hemoglobin was very low made for an extremely tired little girl. Nonetheless, through it all, she has had cheerful spirits and a positive attitude. I love my girl!!

We met with a new naturopathic doctor on Thursday. He has been amazingly helpful already and is infectiously positive. He wants to start next week with intravenous nutrition therapy and has sent us a plan for supplements and diet. I like that he is willing to work with our oncologist to find out what is going to work best with Lily’s chemotherapy treatments. From him, we are able to get professional advice from a different perspective.

Next week will be chemo free! However, Lily will have to have daily injections of Neupogen in the hopes that her white blood counts don’t drop too low. Luckily she hasn’t had any uncomfortable side effects from this drug other than occasional bruising at the injection site.

We will be meeting with the naturopathic doctor next week and will pop into the clinic for blood draws on Wednesday. Hopefully there will be no other need for doctor visits!

This week Lily had a break, with chemo only on Monday and no other doctor appointments. Her doctor is back to giving her a full dose of Vincristine and she is tolerating it much better than she did in the beginning of her treatment. Lily felt relatively good all week, and was only extra tired and weak when her blood counts dropped from the chemo the week before. The drop in blood counts usually occurs 7-10 days after certain chemotherapies-- like those she had last week. Lily is given time to recover and get her counts back up before her next intensive round of chemotherapy. All week I had to give her daily injections of Neupogen to help increase white blood counts, but red blood counts can only be increased through blood transfusions and I think she may be getting close to needing another one soon.

Over the course of the week, Lily was able to hang out with her friends, go to girl scouts and attend the lunch my dad’s work had on Friday.  We also went to the Boyce Thompson Arboretum. I was hoping we would see spring flowers, but I guess we were too early; there weren’t many flowers to be seen. It made me sad, remembering our last visit to the arboretum before Lily was diagnosed. It seems like ages ago, but in reality it was less than four months ago! It's strange to think that she had cancer then and we did not know it; she seemed healthy and full of energy. It is also unbelievable how quickly her health was ravaged by it!

Spring break is next week and fortunately both Phillip and I have the week off from work because Lily is scheduled to have chemo every day at the clinic. She will have two more new drugs- Isosfamide and Etoposide- and will have to be on 24 hour hydration throughout the entire week. Each day after her doctor visit, we will be sent home with fluids that will be continuously pumped through her port IV to ensure she stays hydrated and to protect her bladder from the chemo.