This event is being sponsored by two very amazing women. Thank you Elizabeth and Michelle!

Thank you also to everyone else who is helping with the event.

When strangers reach out to lend a helping hand by giving of their time, resources and energy, you know that there is pure goodness in world J 

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!

Thank You!!!

A big THANK YOU to all who participated and helped with the benefit barbecue! It was a great success thanks to you.






  




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.

Benefit BBQ

My dad's work is having a benefit barbecue for Lily on Friday, March 11th at 11:30 a.m.
It will take place at Earnhardt Toyota 6136 East Auto Loop Avenue, Mesa, AZ, 85206. They will be selling baked goods and $5.00 lunch plates.

Thank you Jim and Jordan and everyone else who is helping!!

Being deeply loved by someone gives you strength, while loving someone deeply gives you courage. ~ Lao Tzu

This week we have certainly had our ups and downs, but I feel like I am learning acceptance and with that comes a feeling of peace and strength.  In small ways this week has been one of insight. Lily’s courage and optimism in the face of everything thrown her way humbles me and makes me stronger.  If she can handle what she has gone through and still smile, then I can do no less. 

On Monday Lily had three different chemotherapy drugs: Vincristine, Doxorubicin and Cyclophosphamide.  She had never had the last two before and had an allergic reaction to the Cyclophosphamide. When she would breathe in her nose would burn, her eyes were red and itchy and her face got swollen. The doctor slowed the infusion, but did not stop it. We ended up staying at the clinic for 6 hours, with Lily cheerful and talkative through it all. 

We met the home care nurse at this visit and she complimented Lily on what a wonderful personality she has, saying that she could be a comedian. Lily was telling stories and cracking jokes and startling the nurses with the dragon puppet she got at the Renaissance Festival. That night, the doctor sent her home connected to fluids through her IV.  Cyclophosphamide is irritating to the bladder and so needs to be continuously flushed from the body. They also gave her a drug called MESNA to help protect her bladder.  Later that night she was sick, but by the next morning was feeling better and ready to go again.

On Tuesday Lily was only given Doxorubicin, a creepy looking red liquid that turns urine red too.  Both of the new chemotherapy drugs can really lower blood counts, so on Wednesday Lily had to start taking another new drug called Neupogen to help elevate her white blood counts. This is given through daily injections, so I had to learn how to administer the shots.  This wasn’t easy for me; things like this make me so nervous. I wouldn’t even willingly set foot inside a hospital before Lily got sick, let alone inject my baby with scary drugs. Necessity has toughened me up though, and I am able to do what I have to do. I am glad that the doctor is allowing us to do all of this outpatient; often children are admitted to the hospital when they are given Cyclophosphamide.

Wednesday night Lily was not feeling well. She was sick to her stomach and that continued all day Thursday so on Friday I took her to the clinic to get her blood counts checked. They also gave her fluids  and anti-nausea medicine intravenously. Her blood counts were okay and the fluids and medicine really helped her feel better. She has been feeling good since and we had a really nice relaxing day today. This morning I pushed her around the trails at the Riparian Habitat and we checked out books from the library. It was great to be outdoors in this fabulous spring weather!

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.