Happy New Year

Although I didn't get as much accomplished during my holiday vacation as I wanted to (the garage is still an unorganized mess), I did get some much needed time to focus on renewing and recharging my energies.

A large part of this was due to the fact that Lily hasn't had chemo (or any doctor appointments for that matter!) in over 3 weeks. This is one of the longest breaks that she has had in her treatment. She was initially scheduled for the chemotherapy Irinotecan for 5 days straight the week before Christmas, but we knew that if she stuck with that schedule, she would be sick for Christmas weekend and we really didn't want that. Then, for the two weeks following Christmas, the east valley clinic was closed on Monday and rather than going to Phoenix for treatment, we decided to take a long break to just enjoy the holidays without having to worry about it.

It's been wonderful to see her feeling so well. Her hair is starting to grow back and she's gained some weight. She's been running around, playing with her friends in the neighborhood, and her wheelchair is now just another thing to clutter my garage!

My one wish for the new year is that she will continue to heal and grow into the beautiful young woman I know she can be. My artistic, funny, original, smart, caring girl. How I love her!

During my time off, I spent a lot of time reflecting and it's helped me to feel recharged and ready to face whatever 2012 brings.

Bring on 2012

Lily is scheduled for chemo on Monday and it's hard to think about going back. It's also hard to know if these rounds of chemo are truly necessary at this point. We are trusting the doctors who tell us that according to research, the likelihood of the cancer coming back is lessened if Lily finishes the entire course of treatment that was prescribed. And this makes sense, I mean, think about it- when you have an infection, you don't stop taking antibiotics as soon as you feel better. You are told to take the entire course of treatment to ensure that your illness doesn't come back.

The last thing we want is for the cancer to come back.

Okay, to say that I've been remiss with this blog is a bit of an understatement.

In my defense, I've been so busy with puppies, homeschooling, doctor appointments, work, work, and more work, plus occasionally cleaning my house, exercising, and spending time with family and friends that there simply hasn't been time in the day for all that I want to accomplish. In addition to this, I'm really embarrassed to admit that I have a bit of an addiction....and it's called crochet; more about that later...

Luckily (?) Phillip has been home to help, but somehow having him home means I get even less done and he is still recovering from his knee surgery. So tonight, in a moment of quiet (Phillip is at school, Lily went out to eat with Grandma, and Jacob is doing homework), I finally logged on here to check in and realized that I never posted this blog that I wrote almost a month ago after we got the news of Lily's biopsy:

Each simple day brings forth so many moments to be thankful for.
I’m awed that even the tiniest details of my daily life reveal the greatest mysteries.

Simply waking up with the sun each morning; being alive- laughing, loving, singing, enjoying the beauty of this wondrous earth reveal to me the miracle that is life.
All too often, however, I tend to forget or maybe fail to recognize how precious and beautiful life truly is. Perhaps we all do this, or perhaps as a sensitive and emotional person, my focus too easily gets swept away by my thoughts, feelings and worries. Either way, Lily and the challenges she faces bring into sharp relief for me what a gift life is.

Last week, we found out that Lily’s bone marrow biopsy was negative for metastatic  tumor. This means, that according to all tests and scans, Lily is in remission. Words can’t describe how happy and grateful we were to hear this news.

Most of you already know this beautiful news. Reading this post again made me realize what a whirlwind this past month has been since I wrote this. I think I have been swept away!

Time to refocus my energies. Time to be mindful of each moment as it comes. Time to breathe deep, relax, and smile. Lily is in remission!

Amazingly Wonderful News!

Today we got the results of Lily's MRI and PET scan and they were fantastic! The doctor said her PET scan was perfect and is simply amazed at how well she is doing. He wants to do one more test- a bone marrow biopsy- but said the chances of that showing something the scans do not is very slim. Lily also had an Echo and EKG done on her heart to make sure it has not been damaged by some of the chemotherapy drugs, but everything looks great.

This picture of Lily's PET scan is just a photocopy, but you can see when you compare the first image from January to the image from this week what a difference there is between the two. Lily's first scan revealed cancer in her foot, knee, pelvis, spine, shoulders and arms. The second image is completely normal.

Words really can't describe how I felt after meeting with the doctor today. Joy. Gratitude. And a surreal feeling that I can't explain. The doctor actually said the words total and remission.

Lily will continue her scheduled chemotherapy treatment for the next three months, but it will not be as intense as it has been in the past. Monday she will have a transfusion with overnight hydration, but then she will get two weeks off from chemotherapy. This cycle will continue for the next 9 weeks, followed by even "easier" chemotherapy drugs. Once Lily has completed her treatment, she will have another evaluation. If everything still looks good, she will only need to be seen periodically to be evaluated. 

The doctor reminded us today of how far Lily has come when he mentioned the night, nearly 9 months ago, when Phillip and I sobbed in his office as our world came crashing down on us. I never could understand how anyone would want such a terribly heartbreaking career, but what a difference today's visit was. Now it makes a little more sense. 

When I thanked the doctor, however, he said, "Don't thank me. It's all her," and pointed at Lily. In a way, he is right. Lily's strength of body and mind is something simply amazing. But I also know where we would be without the doctors, nurses, medical science, holistic medicine, family, friends, love, prayers and human kindness (in no certain order) working for us. And for this, I am thankful!

To get through the hardest journey we need take only one step at a time, but we must keep on stepping ~ Chinese Proverb

Lily hiking in Woods Canyon last summer

It has been 6 months since Lily was diagnosed and we have made it halfway through the treatment plan that her oncologists have recommended so far.

She has been through more in that short time than anyone should have to go through, but the biggest lesson we have learned is to appreciate the blessings of each day as they come. There is always joy and beauty to be found in the world no matter what your circumstances and we have many, many blessings to be thankful for. The hard days only help us to appreciate the good all the more, and lend a different perspective to what is truly important in life and just how precious it is.

Lily has a long journey ahead of her still, but I know she will be strong enough to face the challenges she is presented with. Lily’s perseverance and positive attitude is such an inspiration to me. She has taught me that you cannot hide from life; it’s there- the good and the bad- and it’s best to face it head on without fear. That doesn’t mean that I don’t worry (because I do) but I feel more and more like I am able to let go and accept life for what it is- terribly imperfect, yes, but also wonderfully beautiful if you are willing to look.

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.

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.

I haven't written for a while because I have been so busy. Last week Lily was hospitalized for three days because she was running a fever and since then I have been struggling to get caught up with work, etc.

Lily's fever lasted less than a day and was low grade, so we weren't too worried. However, she did have low white blood counts that week and extreme fatigue, so we took her in right away to the doctor. The doctors at PCH follow the same protocol for all patients, which is a fever over 100.4 and low counts = hospitalization.

Lily had her first ride in an ambulance from the clinic to the hospital and by the time we got to the hospital, her fever was gone and did not return the whole time we were there. I was so thankful that she was not seriously ill, but also quite frustrated that her doctors did not want to release her until her blood culture came back negative for bacterial infection. I understood their rational: "better to be safe than sorry." However, I tended to disagree with the idea that the hospital is the safest environment for someone in this circumstance (she was obviously not seriously sick). Yes, in the hospital we had direct access to doctors and medication, but we also had direct access to lots of sick people and hospital germs. At the hospital, we also got lack of sleep and unhealthy hospital food, neither of which are good things for someone trying to heal. It is also stressful and depressing to be locked up, indoors without fresh air!

However, in distinct Lily fashion, we tried to make the best of it and look at the bright side of things. There was the play room with lots of games and crafts to do everyday. There were super nice nurses who are willing to give lots of attention. There was plenty of time to lie around watching movies. And there was the fact that Lily felt good enough to enjoy these things! Yes, we are learning more and more that there are so many things to be thankful for no matter what circumstances we find ourselves in. J

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!

One Day at a Time

Life isn't about waiting for the storm to pass; it's about learning how to dance in the rain

Every since Lily was admitted into the hospital and we knew something was seriously wrong, we have had to take things moment by moment and day by day.  It was far too terrifying to imagine things that might or might not happen in the future.  I wasn't surprised that this seemed to come naturally for Lily, but I was surprised at my own ability to do so.  
Taking each moment as it comes was a lesson hard, but well learned. It may seem difficult to find moments of joy while cooped up in a hospital for days on end where fear and worry are constant companions, but they are there if one looks.  Just being close to my sweet little angel and spending time with her; holding her, brushing her hair, rubbing her back and making her smile are enough. I appreciate every minute I have her with me.