Random Thoughts and Musings

Every day, I *try* to go to at least three blogs to read, explore, and comment. I tend to hit some far more heavily than others, because they are written by people I would like to believe are my friends. If I am *only* going to visit three blogs, one of those blogs will be a blog I have not visited before, or have not been to in a long time. The “3 Blogs a Day” endeavor is a personal challenge designed to help me, because there are SO MANY blogs out there that are interesting and fun. When I go to a new blog, I tend to spend an hour or two reading past posts … I get caught up in getting to know the writer through their thoughts.

Last night, while I was Plurking, one of my PlurFriends, @AlisonL, caught my attention. We spend a lot of time in common threads, Plurking to common friends, but she and I have not had a lot of personal conversation. I do remember, however, that she has been very supportive emotionally during the Baby S turmoil. Something told me I wanted to check her out more closely, so I clicked on her profile, and started reading a little bit. Once I’d looked over a few of her Plurks, I looked down to see what she’d written in her “About Me” block. There wasn’t a whole lot there, but she DID post a blog link. I dropped by, and was immediately caught up in what I found: A blog dedicated solely to finding the inspiration in everyday, average people. Each day, she chooses one person to highlight, brag about, and/or thank.

I suggest you start at Day 1, and go through the whole blog. If you’re catching it today, you’re getting in early and will have no trouble keeping up! This project is a worthy project, one that ties in closely with my own endeavor to help make a random person’s day brighter every day. My way is to simply smile or help in a manner that is unexpected but needed. I like @Ali’s Project 365 … and I want to find a way to expand on that. I *think* I have an idea … but I will blog about that another day.

Today is about celebrating Alison and Project 365. Thank you, Alison, for recognizing that everyday people doing everyday things can REALLY brighten the world with their sunshine. You’re an amazing woman, and I hope that one day you make someone else’s blog.

A friend of mine, VryNRSN, wrote a beautiful piece on his blog (you should go read it, just remember to come back here!). At the end, he posed this question:

That is my dream, on this important anniversary, what is yours?

My answer:

My dream is that people as a whole practice the art of compassion and kindness, that monetary value become less significant than the greater good, and that our world becomes a clean and healthy world overall.

I expanded on that thought in his *other* blog, with this:

I think that equality is only a small part of what needs to be accomplished in our world. Yes, I want equality for all … I have always admired the people in our world who *deserve* to be set apart for their greatness, but who “rub elbows” with the “average” people around them anyway.

My dream, therefore, is not limited to equality. My dream is for all people to practice compassion and kindness, for monetary value of products and services to become less significant than the greater good those products and services can provide, and for our world to become clean and healthy overall.

I dream that my grandchildren will live in a happy and carefree existence. I that kindness will be the norm, and ugliness (abuse, robbery, murder, etc) the exception. I dream of a world in which people *want* to live, love, laugh, and learn.

So, having written all that on HIS blog, in his replies, why am I re-posting it here? Because, I have more to say. I think. I hope. If I don’t get too distracted by work (you know, phones, coworkers, customers, and the bosses).

We live in a world where people spend their time focused on ONE cause, ONE piece of the pie, ONE factor in a whole WORLD of wrongdoings and mishaps. I am not, by any means, saying we live in a bad world, occupied by bad people. I refuse to believe that. I believe that all people are basically good, and some are misguided or abused to the point where they no longer distinguish the idea of “wrong” from the idea of “right.”

I believe in the causes people focus on: equality for everyone, environmentalism, save the children, help the poor, rescue the animals… These are ALL great causes. They will ALL help the world become a better place, in the long run.

I have always believed that the REAL change comes from teaching today’s children that they should be making better choice daily. Not once a year, when Christmas rolls around. Not once a month, when you can fit in an hour of volunteer work amidst your guitar lessons, soccer practice, Girl Scouts, and social “commitments.” Not even once a week when you drop a bag of groceries off at the local pantry-for-the-poor.

EVERY SINGLE DAY, EVERY SINGLE PERSON should make a better choice. This can be as simple as NOT throwing your garbage on the ground, NOT throwing your aluminum cans in the trash can, NOT walking past the elderly gentleman wrestling with his cane, his keys, and the three bags of groceries that look like they will break his arm, or NOT driving past the man kicking his dog in the front yard of his home without calling for help. Every single day, you can make a choice to do things better, to encourage your children (or your neighbor’s children) to do something better. You can smile at the stressed out mom with a screaming child instead of frowning at her in disapproval. You can hand the gentleman who dropped a $20 his money back instead of pocketing or spending the money as if it was your own. You can mow the lawn of the elderly couple down the street, offer to pick up your neighbor’s grocery order so she doesn’t have to leave her sick child at home with a sitter, or refuse to take part in a conversation that condones racism. Each of these choices makes one small part of your world better right NOW, without having to focus on a “cause.”

Dream of a better world. Dare to imagine what our world would be like if we focused on the greater good instead of the bottom line. Open your mind to the possibility of a world that gets better daily, instead of taking four steps back for every three steps forward. Expand the realms of all possibilities of good.

My challenge to you: No matter how bad YOUR day might be going, make one choice each and every day of the next week to make OUR world a better place (i.e., not just YOUR world). I would love to hear about your experiences!!

I was moving around the net, looking for three blogs to comment on (a personal goal of mine) when one of my Plurk friends, @cajunvegan, posted her blog link. I followed it over, and she had written this blog post, which cracked me up .. and inspired me to find out what the quiz would say about my name.

So, I moseyed on over to the quiz, and this is what it told me:

What “Devyl’s Real Name” Means

You are usually the best at everything … you strive for perfection.
You are confident, authoritative, and aggressive.
You have the classic “Type A” personality.

You are very intuitive and wise. You understand the world better than most people.
You also have a very active imagination. You often get carried away with your thoughts.
You are prone to a little paranoia and jealousy. You sometimes go overboard in interpreting signals.

You are deeply philosophical and thoughtful. You tend to analyze every aspect of your life.
You are intuitive, brilliant, and quite introverted. You value your time alone.
Often times, you are grumpy with other people. You don’t appreciate them trying to interfere in your affairs.

You are friendly, charming, and warm. You get along with almost everyone.
You work hard not to rock the boat. Your easy going attitude brings people together.
At times, you can be a little flaky and irresponsible. But for the important things, you pull it together.

You are relaxed, chill, and very likely to go with the flow.
You are light hearted and accepting. You don’t get worked up easily.
Well adjusted and incredibly happy, many people wonder what your secret to life is.

You are the total package - suave, sexy, smart, and strong.
You have the whole world under your spell, and you can influence almost everyone you know.
You don’t always resist your urges to crush the weak. Just remember, they don’t have as much going for them as you do.

Out of curiosity, I also typed in “Devyl,” and this is what it said:

What Devyl Means

You are balanced, orderly, and organized. You like your ducks in a row.
You are powerful and competent, especially in the workplace.
People can see you as stubborn and headstrong. You definitely have a dominant personality.

You are friendly, charming, and warm. You get along with almost everyone.
You work hard not to rock the boat. Your easy going attitude brings people together.
At times, you can be a little flaky and irresponsible. But for the important things, you pull it together.

You are very hyper. You never slow down, even when it’s killing you.
You’re the type of person who can be a workaholic during the day… and still have the energy to party all night.
Your energy is definitely a magnet for those around you. People are addicted to your vibe.

You are a free spirit, and you resent anyone who tries to fence you in.
You are unpredictable, adventurous, and always a little surprising.
You may miss out by not settling down, but you’re too busy having fun to care.

You are relaxed, chill, and very likely to go with the flow.
You are light hearted and accepting. You don’t get worked up easily.
Well adjusted and incredibly happy, many people wonder what your secret to life is.

Try yours .. and enjoy!!

Just a quick update for all of you that have been so wonderful to us throughout this roller coaster.
Baby S had her first Chemotherapy treatment on Tuesday of last week. It was a 4-hour session, after a four hours of hydration and anti-nausea medication. She had her first follow-up treatment on Thursday of last week, a one-hour session.

Baby S came home on Thursday night. I was able to spend a little time cuddling her (after sanitizing and putting on a mask, of course) while we waited for the doctors to discharge her. When we brought her home, her siblings and my tween were able to don masks, wash up really well, and go in and talk to her, touch her a little, and snuggle her for a moment (they didn’t get to hold her and cuddle her though).

Since then, she has been thriving. We’re so impressed with how well she’s handling this first week of chemo. She’s been a happy, smiley baby, and C tells me every day how great she looks and how well things are going.

Baby S will have her second follow-up treatment this week, and another next week. The doses are low, they are trying to just shrink the tumor enough to operate. However, each follow-up may bring different physical and emotional reactions to the treatment. So, while I can say (with pride, thankfulness, and happiness) that she is doing well NOW, I have been afraid to say that too much. Basically, I know that several of my friends/acquaintances/contacts kept getting frustrated with the constant back and forth of cancer, not cancer, doing well, in the hospital, almost died yesterday, doing well, cancer, etc.

So … for now, I will say she is handling LAST WEEK’S chemo like a champ. Hopefully she will continue to have a “good” experience with chemotherapy.

Thank you, everyone, for your love, concern, prayers, well-wishes, and positive thinking. We love having your support.

xo

Today, I drove out to Pensacola to bring C and Baby S home. I was able to wear a mask and snuggle the little bundle of joy and happiness … hold her, rock her, admire how she’s grown, tickle her toes …

It is a happy day, and I am a happy Auntie.

Thank you for all of your support, prayers, well-wishing. You have been wonderful.

The battle is not yet won, we’ve simply gained a point.

Baby S had chemotherapy on Tuesday, with the follow-up treatment today. She will rest at home (unless complications arise) until next Thursday, when she will go to the clinic for another follow-up treatment. One more treatment the Thursday after, and then they’ll measure the mass.

• IF it is responding in what they consider an appropriate manner, she will then endure another hospital stay for three days while they give her a second 4-hour session followed by three more follow-up treatments. THEN we will schedule surgery.
• If, at the measurement, they do not feel the mass is shrinking enough, they will schedule surgery immediately. No need to put her through the additional round if it is not going to shrink the mass enough.
• AFTER the surgery, Baby S will undergo four more rounds of chemotherapy treatments (12 weeks). And then, we wait and watch and keep a close eye out.

Please, keep Baby S and her family and loved ones (and those that love her) in your prayers. We all appreciate the extra boost of love and support.

***********************************************************************

ALSO …

Our neighbor was rushed to the emergency room late last night, suffering from a stroke. It was discovered that she had an aneurysm, and it had burst. We were told she’d be gone by noon, and there was nothing to be done.

Her husband (Chris) requested a second opinion. The second opinion neurologist told him that if she made it to midafternoon, IF the bleeding stopped on its own … she MIGHT live. She MIGHT even have some semblance of cognizance and movement. We are praying for Angie, Chris, and their son (John). Please, help us lift her in prayer.

And, as always, if you don’t pray … please, positive vibes and warm thoughts are ALWAYS welcome.

xo

Hi everyone

Again, thank you for following along and offering your emotional/mental support, prayers, warm thoughts, and positive vibes. C & B feel very blessed to have my extended ‘net family pulling for them. And I am grateful for the venue to vent, bitch, and moan so that when I talk to C & B or see them, I can be warm and happy and full of positive energy!

Today, Baby S has had a good day. They’ve moved her back to an infants & toddlers room … but are still discouraging visitors.

Baby S had another blood transfusion earlier in the day, and C & B said that she had been looking much better for most of the day. She was laughing and showing far fewer signs of pain and agitation. Her appetite also picked up, and she kept C awake all night, nursing every hour (YAY!). These are good things.

Towards the end of the day, though, her stomach was hard and distended. She *may* be bleeding into her stomach again. The surgeons came in to check her, and said she’s not showing real signs of bleeding out, but they will be checking on her throughout the night to be sure.

All in all, it has been a good day. I miss my best friend. I miss the baby. But I’m glad she seems to be responding positively to everything so far. Chemo starts Monday or Tuesday. I’m not sure which anymore (everything is CONSTANTLY changing!).

We’re just continuing to smile and we’re choosing to be happy today. We will take every little bit of good news we can get at this point. And lil Baby S is STILL smiling and cooing tonight.

Thank you everyone … I will continue to update as things continue to happen.
xo

I’m just going to collect the texts that I sent out to my friends, and put them in one place for those of you who want to keep up with what is going on.

Baby S has been recovering well from the biopsy they performed (my whole week is run together, so I can’t remember if the biopsy was Wed or Thurs … I *think* Wednesday). She’s in a lot of pain, and not nursing, so being fed thru IV. The procedure confirmed hepatoblastoma (Liver cancer) stage 2, erasing any remaining hope for a non-cancerous tumor. Baby S confined to PICU. She starts chemo on Monday. Will be in hospital for at LEAST one more week. Will have 1-2 sessions before surgery to shrink tumor. The surgery will be in a few weeks. Then, a few days of recovery and follow-up chemo to make sure it is gone. She will not be allowed contact with anyone but Mom until after this is all said and done. BFF is concerned about the effect on the other kids. I’m worried about all of them. BFF has to shut down her daycare, so that is huge loss in income, coupled with huge amounts of new expenses.

Here’s the official biopsy report:

Mixed epithelia-mesenchymal type with embryonal/fetal components & fibrotic spindaled cells with osteoid.

The liver biopsy shows both types of patterns on permanent section including fetal type & embrional type patterns. there is extramedullary hematopoiesis seen in association with the fetal component of the tumor.

Favor cellular liver parenchyma.

I am not sure about the particulars of everything, but basically she doesn’t have the *worst* kind of liver cancer (the one with only 20% chance of survival) but she also doesn’t have the kind we hoped she had (that has a 100% chance with no chemo).

All of this is insane. I wish circumstances were different, and I could take a few months off of work to help care for Christy, the other kids, and Baby S. I know it is going to be a rough road ahead.

Thank you, all of you, for your continued prayers, well wishes, warm thoughts, and positive vibes. We can use all of that now, and into the next few months. I hope that the treatment is far less challenging than the diagnosis process.

xo

I’m at the hospital with C & S right now. S is resting well, completely unaware that anything is wrong.

C gave me a little more info, so I thought I’d update here, for anyone who may be interested in knowing. Right now, we don’t know what stage the cancer is in. It is definitely a hepatoblastoma, which is a cancer of the liver.

Here’s a brief synopsis of what the “stages” are:

What are the different stages of childhood liver cancer?

Staging is the process of determining whether cancer has spread and, if so, how far. There are various staging symptoms that are used for hepatoblastoma. Always consult your child’s physician for information on staging. One method of staging hepatoblastoma is the following:

• stage I - usually a tumor that can be completely removed with surgery.
• stage II - usually a tumor that can mostly be removed by surgery but very small amounts of the cancer are left in the liver.
• stage III - usually a tumor that cannot be completely removed and the cancer cells are found in the lymph nodes.
• stage IV - cancer that has spread (metastasized) to other parts of the body

recurrent - the disease has returned after it has been treated. It may come back in the liver or in another part of the body.

Stage I, obviously, is what we are praying S has … it would mean that the surgery (Sunday or Monday, if all continues to go well) could put an end to ALL of this. We’d still have to have her monitored, of course …but she may not need chemotherapy (which is rough on adults, so you can imagine what it’ll be like for an infant!).

As of now, the mass is 5 centimeters. That is, roughly, the size of a golf ball.

The levels I mentioned in my last post, by the way, were “AFP,” or Alpha-fetaprotein levels.

Thank you for your thoughts and prayers. We are very grateful to have such a wonderful, extended circle of family and friends.

xoxo

My best friend (C) had a baby (S) in May. Three days after the baby was born, I noticed that the folds on her back were not baby fat, but some other mass. I brought it to C’s attention, who brought it to the attention of her hubby (B). They decided to take the baby into the doctor the next day, rather than wait for her two-week checkup.

The doctor told them the bumps were not much to worry about, but that they’d run some tests. One thing led to another, and we were told that it is possible the baby had to have surgery. At nearly three weeks old, S was admitted to the hospital to have some tests run. We were told she would most likely be there throughout the week. The same day, we were told that she had cancer. We were, obviously, devastated. A spot was discovered on her liver, but we were told that this spot was secondary to the masses on her back, because it could be any number of things, most of which were no real danger long-term. The next few days, more tests were run and a biopsy was scheduled. We were told it was most likely a neuroblastoma, which, in a baby, could be a VERY good thing. If it was a certain kind of neuroblastoma, her own antibodies would fight it off. If not, she’d have to have chemotherapy and with the number of tumors she had (we could see three on her back by then, and weren’t sure how many others there were), her chance of survival was low.

I had already set in motion prayer circles through our Church, our families, our friends, my boss’s Church, my boss’s family, and my friends and acquaintances on Twitter and Plurk. Some of my very generous friends (who asked to remain anonymous) donated money to help get me back and forth to the hospital (Sacred Heart is an hour or so away from where I live and where I work) so I could spend the nights with C there, while her hubby came home to be with the other kids (they have five). Again, I wanted to thank my friends for their help, because I know how lonely and scary hospitals can be at night, when you’re alone and your brain is working overtime. C is very thankful as well, because having me there meant having someone to lean on, someone to cry to … because she felt she needed to be strong for her husband when they were together.

The surgery was successful, and the doctors said that the scans showed that the tumors were benign. We asked about the mass on her liver, and were again told it was a secondary concern. After a few more tests and a growth culture, we were told that the cancer was gone from her body. We were shocked, amazed, and grateful. Once again, we inquired about the spot on her liver … and were told it was nothing, a minor concern, they would just keep an eye on it over the next several months. Another very generous friend (@zaibatsu) sent a gorgeous set of baskets filled with goodies to congratulate C, B, & S on the great news. We began to feel like all was well and right with the world again.

A few more weeks went by, and her checkups were all good. We still had a nagging feeling about the spot on her liver, but were continuously told she was fine, that if it increased in size, she would be taken in for further testing.

One day, at a normal checkup, her doctor said he wanted another test on the liver. Upon questioning, he explained that the mass seemed to feel larger to him, and he was concerned. C & B felt that not enough time had passed since all of the other radiation-based testing, and began asking if there was another way to determine what was going on. We were referred over to another doctor, an oncologist, who immediately began firing off questions to us, the doctors, and the previous oncologist. Apparently, the spot on her liver WAS something to be concerned about. When he reviewed her charts and tests from before, he pointed out several things that should have been key indicators that the spot needed to be watched more closely. He ordered some blood draws, chastised the previous oncologist for not having them done before (because if the blood work had been ordered before, we’d be a whole month ahead of where we are now).

The last three weeks, S’s blood has been drawn and sent into the labs. A particular level they were looking for started out at 5600, dropped to 1200, then the blood draw this week (taken yesterday) jumped to 8800. The doctored called C, directed her to go to the hospital immediately so they could do another ultrasound.

About an hour ago, I got the call: the baby definitely has cancer, STILL. The spot on her liver is a mass that needs to be removed, immediately. C and S checked into hospital today, more tests to be run, blood to be worked up, stuff to be done. And I’m driving out there immediately after work. I have to come back to town tomorrow to work my shift, and will drive back out to hospital tomorrow afternoon. I simply can’t afford to lose the hours, which I know seems ridiculous, since it is only 4 hours. Asi es la vida.

The baby has, officially, hepatoblastoma. Officially, the news is good: it has a 100% recovery rate if the resection is complete the first time, and followed immediately by adjuvant chemotherapy. We are holding onto that information and keeping it close to our heart. (The alternative is that there is residual disease left on liver inadvertently … even with aggressive chemotherapy, the outlook is not good.)

So, once again I put my request out there to all of you:

Please, if you believe in prayer, pray for my niece. If you do not believe in prayer, please think positive thoughts and keep a warm thought or two in your mind for little S as she goes through this ordeal. Also, please pray for C & B to be strong, to keep positive thoughts, and to focus on the good and not the negative. I will be by their side as much as possible, leaving only to come back to town to work, and will be doing my best to bolster their spirits. But warm and positive thoughts, prayer, and knowing we have people behind us all help.

A photo of S and I cuddling in late July 2008