Random Thoughts and Musings

My theme this year will be to find the joy in things …

Anyone who knows me well knows that I have a habit of looking at the bright side of things. (Those who do not know me well think I am a pessimist, because of my habit of thinking about what could go wrong so I can try to prevent it from happening.) I wake up in the mornings (grumpy, for sure) and CHOOSE to look at the day as a new start, a new day to do something good for someone else, a new day to see the sunrise and the sunset … I choose happiness each day, whether or not I have been given “good” reason to do so. I choose happiness because misery begets misery and happiness begets happiness. I choose happiness because I like to LIVE my life - I only get one, according to some, and I do not want to waste a minute of the life that I have been so generously given.

However, as I recently discovered, and posted about on the guest blog post I wrote for my friend Soren’s blog, I have often missed out on the JOY of life. I have a beautiful life, do not get me wrong. I enjoy playtime with my Tween, my nieces and nephews. I love doing fun things with my friends. I enjoy having time to myself to watch tv, read, write, walk, sit on the beach, or drive around (*cringes at the waste of gas* … but in my defense I have not done this more than twice this year, promise!).

This year, though, I will be looking for the JOY in things. I will try to play a little longer, without getting annoyed. I will romp and play without worrying if someone is going to get hurt. I will laugh and sing and dance and jump on my friend A’s trampoline with the kids. I will actually go on a water slide when we go to the water park, rather than sitting in the shade and enjoying my book. I will splash and play with the kids more at the beach (although I pride myself on being the ONLY adult who got in the water with the kids the last few times we went). I will make sandwiches in silly shapes for the kids, and decorate their dinner plates with something fun, and find any other way I can to bring out the special laughter that only a child can deliver.

I wish you all a beautiful 2009. I hope your mansion of life is filled with love and laughter, friendship and companionship, accomplishments, achievements, and most of all … joy.

My personal motto has been love, laugh, learn, and live … now it will be to find the joy in love, the joy in learning, the joy in laughter, and the joy in living. I hope you all find joy in your lives as well.

Love and hugs,

Devy Gyrl

xoxoxoxo

Baby S had tests run last night, and was discovered to be Neutropenic. She had to  stay in the hospital last night, but they were not sure til after 9pm, so i stayed home with Tween and the other kids. Until then, they had thought they would give her a Neupogen shot and send her home til Monday, when she is supposed to be checked into the hospital for more chemotherapy anyway.

However, her tests were run again today - AFTER the Neupogen shot, which normally raises her levels above 500 or 1000 fairly quickly -and her ANC’s are around 40. Normal is, I believe, around 4000 … and anything under 500 is a severe risk of infection.

If her levels remain below 1000, they cannot administer her chemotherapy, because her body would not be able to handle the dangerous medications.

So right now, it looks like I will be going to the hospital for the afternoon, and then coming home late tonight or early in the morning because B works (he’s an EMT) tomorrow morning (and usually has to leave the house around 6am, so he’ll need me home about 4 am.

If I can nap this afternoon at the hospital, I can stay awake through the evening and night to take care of Baby S … she is always at her most restless between 1 and 5 am, and that is when C is feeling the crunch of her exhaustion the most. So, if I am awake around 9, C & I can socialize for a couple of hours, then I can put her to bed and take care of Baby S for a few hours, then drive home to C’s house to take over care of the kids from B. My tween will be at the house with me, and will help take care of C & B’s three other kids, none of whom will be in great danger if I nap on and off through the day. Tween is old enough to babysit alone (according to the law, even … she’s been babysitting for years because she is more mature than most kids her age), so helping with a 9, 6, and 3 yr old while I nap will be a piece of cake.

So anyway … I think i am babbling because I am still trying to plan things out in my head while I give you guys the information I have.

What we know for sure is that she is severely neutropenic and she will be receiving antibiotics. She cannot have her chemo treatment if she does not respond and her ANC levels do not raise to at least 1000 by Monday. Postponing chemo is, of course, dangerous, because it gives the cancer cells time to fight back (which we do NOT want). They still cannot determine why her AFP levels are so high, and they cannot see anything on the scans that she has had so far. It looks like she will be transferred back to Shands in Gainesville … which means that I cannot be at the hospital to help. I will be practically living at the house, taking care of the other 3 kids (and my Tween).

There I go babbling again.

She is in danger of infection. Period. ANYTHING can infect her.

Will update you when I have more info.

Well, we had a great evening with Baby S at home last night. She was cuddly and sweet and snuggled in my arms all night long (til I had to give her up to the crib anyway). It worried us, because like any normal baby, she usually wants to move around a lot more. I noticed a few times she appeared to have a bit of a fever (it was come and go - literally would last a minute or so), but the thermometer was reading her at normal the various times we checked (and, we checked A LOT).

Today, Baby S is back at the hospital, with a 100.8 degree fever. Not high, I understand. For a baby on Chemo, this could mean something detrimental. We are still holding out hope for “nothing” being wrong … but it looks like she’ll be in the hospital all weekend. That means when I leave work today, I’ll be back at the hospital … and I’ll spend the night, come home early in the morning for work, then go back again in the afternoon. With an hour drive each way, I just hope we’re able to get some sleep tonight or I’ll be hurting (it is 40 minutes or so on a highway with NOTHING to see but trees).

Once again, we ask for your (continued and renewed) prayers, positive thoughts, positive vibes, and love.

I will keep you updated as I find out any information.

xoxo

Ok so here’s the deal.

We had a CT scan and an MRI and some bloodwork. The bloodwork shows something is DEFINITELY GOING ON. Most likely a reoccurance of cancer. This is a VERYBADTHING.

However, the scans are not showing anything at this point, so we are unsure of where to go with things. This is *NOT* good news, folks. Just because nothing shows on the scans does not mean nothing is there. It *could* mean nothing is there. It could ALSO mean it is too small or too spread out for us to see at this point.

We are, of course, praying for the “nothing there” scenario!

Baby S and C are on their way home right now. I will leave work in a little while, collect tween, and go to the house to stay with them in case we have to rush BACK to the hospital for anything through the night.

So. No information, really. Just another ray of hope. The oppression is deep and dark and weighing heavily, because her blood levels are so indicative of cancer. We are just going to cling to the hope anyway!

For now, we are going to go forth with treatment as we have been in the last couple of months. She will continue to receive her chemo treatments, but her blood will be drawn every time she is at the clinic or hospital (so, each week, sometimes twice a week), and her AFP levels will be monitored very closely. If they continue to rise, they will continue to do scans on her until they can see the problem. If, by some miracle, they lower again … we are going to continue on with the current regiment of treatment.

Now you know what I know. I am happy we’ll be at home tonight … we did not get ANY sleep last night. I tried, but the baby work up soon after and it upset Baby S more to be cuddled up to C and not be able to nurse, so I got back up and took over.

And now I go back to praying for miracles!

Baby S had to go in for a blood transfusion today. This was normal.

I just received a phone call from B. I was quite surprised, as I had not heard from C since before the transfusion appointment. I immediately felt a boulder drop in the bottom of my stomach. B was in tears, near hysterical.

The doctors ran a few preliminary blood tests, just as a precautionary measure. She was immediately checked back into the oncology floor of the hospital.

Baby S’s AFP’s have jumped from 60 to 177.

This is horrendous, horrible, awful, tragic news.

Her cancer has returned.

We are waiting to hear the official news, waiting for the blood tests to come back.

We are, in a nutshell, praying desperately for a miracle. Because the ONLY thing that would make her levels jump that high is a return of the cancer. Liver regeneration does NOT cause that much of a jump.

If her cancer has truly returned, because it has returned while Baby S is on chemotherapy, she will have less than 10% chance of survival.

I feel like a fucking bitch for being upset over losing my job. We might lose Baby S, who is far more valuable than any money in the world. I have to rush home and get my daughter’s project started, then I am going to the hospital.

For anyone who believes in such, please pray.

Anyone else who cares … please think positively and send Baby S positive thoughts and vibes. She needs every ounce of everything that anyone can spare.

Stolen from CajunVegan, because she is fucking fabulous!

And yes, I really am a Leo. Not all of the descriptions fit, but … What the heck?

You Look Like a Leo

It’s likely that you have great hair. No matter what the style is, it’s the first thing people notice about you. (The second part is true, although I swear it is just because it is wild.) Your hair tends to be a great color naturally, and it’s likely you even get highlights from the sun (I have red highlights, which prompted me to go fully red). Overall, your body is slim and graceful. You seem comfortable in your skin. Your body is well-proportioned (I may be fat, but it isn’t all in one place). No part of you is unusually big or small. Like most Leo people, you are probably lively (unsure about this one), interesting, and fun loving (definitely). You are a good friend. You are naturally generous and hospitable.

I found this MeMe here:

http://randomramblingsofastayathomemom.blogspot.com/2008/11/time-for-meme.html

However, I think a few more of my blogging friends have used it since!

1. What is your occupation right now?
I work for a small appliance repair company. Normally, I love my job. The bosses are very conscientious (usually), and willing to go the extra mile for all of us employees. It is rather heartening to work for people who truly care.

2. What color are your socks right now?
Socks? Who wears socks? Even here in Boston, I refuse to wear socks! I am walking around the house in slippers, but as soon as I stop moving, the slippers are kicked off. My slippers are green with snowflakes and penguins. They were a Christmas present last year or the year before from Mom.

3. What are you listening to right now?
A random playlist from the music I have stored on my hard drive. One day, I’ll organize it better!

4. What was the last thing that you ate?
A glazed-chocolate donut hole from Dunkin Donuts. We don’t have them close to home anymore, and they are on practically every corner around Boston, so I *had* to get 25 to eat this week. I got 13 glazed chocolate, 6 glazed donut, and 6 “manager’s special” (the special ones have sprinkles, but i forgot I do not like the taste of red sprinkles, so they will go to waste).

5. Can you drive a stick shift?
Yes! I love standard cars, and am sad that most cars do not come in this option anymore. I learned on a standard, and there is something about them that makes me happy!

6. Last person you spoke to on the phone?
A print shop. I am on hold as we speak, looking up some info for my pseudo-boss in Boston.

7. How old are you today?
33

8. What is your favorite drink?
Water. But I consider that a necessity, and drink tons of it. When I want flavor, Sweet Tea.

9. Have you ever dyed your hair?
Yes, it is dyed red … my natural hair is a brown with red highlights (no idea where those come from). I like me with red hair though: people are less put off by my temper when I have red hair (true story!).

10. What color(s) did you die your hair?
Have always used reddish dyes. I have tried lighter, redder, darker … the color I have now suits me best, methinks.

11. Favorite food?
Offhand, Spaghetti …but only my family’s spaghetti. I do not like it when I eat out. Enchiladas - chicken, with green sauce. Mole …family recipe only - eating it out is gross. Chili … most chili is good,and i like white chili, meatless chili, beanless chili …

12. What is the last movie you watched?
We watched “Men in Black” the other night. Fantastic movie. I had forgotten how much it makes me laugh!!

13. Favorite day of the year?
Any day that I make someone smile, or someone makes me laugh.

Thank you, everyone, for your emotional and mental support. I have the most amazing friends, and you all prove it over and over again. Thank you so much!

Baby S spent the majority of the day at the hospital. She does have a stomach virus of sorts, but she is also anemic, which contributed to the lethargy and inability to eat. She will receive a blood transfusion next week when she goes in for her chemo treatment. Today, she had a bunch of labs drawn, she had a blood transfusion, and she was also rehydrated via IV. Tonight, she is MUCH better, and even ate and nursed within hours of receiving treatment.

Thank you, thank you, thank you.

Love and hugs.

Baby S came through the troubles of the last few days just fine. She went into clinic, they gave her the weekly dose of whatever she gets, and hydrated her, and she felt better.

Yesterday, though, she suddenly became very lethargic. She started spitting up her food when she tried to eat, she tried several times to nurse but fell asleep from the effort. Her diapers were (as of very very early this morning when I was still awake with BFF) still wet, but she also had diarrhea.

She’ll have to go back to the hospital today. With any luck, they will do labs and tests and say it is viral and send her home. Unfortunately, things have not gone that easily for her in the past, so we are all concerned about what will happen today.Since I am away on a working vacation, I am not there to help pick up the slack with the other kids. And, since tween is with BFF’s family, that is a little extra burden on how THEY are going to help with the other kids. Being a burden, especially on someone that needs extra help right now, is very frustrating.

Once again, we are asking for whatever bit of spare energy you have to offer towards a quick recovery for Baby S. She has endured so much and is incredibly beautiful and sweet. I hate that she has to suffer, once again. I hope whatever is unsettling her passes through quickly … but as many of you know, being on chemo is lowering all of her natural resources to fight off anything. Prayers, love, positive thoughts and energy are all welcome.

Thank you.

xo

Kat’s Challenge (for those of you who notice, my answers to her challenges are coming a couple of days later, because it took me a day or two to find them): “When I was a child I used to dream about changing the world (still do, but with less super powers). What was your dream? It doesn’t matter how crazy it sounded, but see if there is something small you can do to move towards that dream today.”

When I was a child, I dreamed about saving lives. I wanted to be a doctor, or a psychologist, or a teacher who made a difference. I wanted to touch people’s hearts and minds, and heal their pain. I no longer have the dream of becoming a doctor of any sort … I think my impatience would make me an awful doctor. However, I do like healing pain.

I am not sure how, exactly, but I think once I manage to get back into school, I will do something about becoming a counselor. My friend Claudia has mentioned this to me on more than one occasion, and it definitely fits in with my childhood dreams. For now, I will continue to offer an ear, a shoulder, and a pair of strong arms to those who need them.

Baby S went to the hospital to have her first dose of her second round of surgery today. Her bloodwork looked great, so they assigned her a room and started preparing for the medications.

Baby S grabbed her leads to her port and ripped them out of her chest … so now chemotherapy has been pushed back … again. Her port has to be re-inserted, and she needs to be watched for infection. Baby S is in pain from the stitches she ripped out (the ones holding the port and each of the two leads in place), but doing well for the moment otherwise.

Please, if you can spare a few thoughts, she can use them. I could not go to the hospital to help because I have developed the sniffles and a sore throat. This means I will be unable to see her before I leave for Boston, which is difficult for me. Those of you who know me well, know I consider all of C’s lil ones mine (despite the fact they have a Mommy AND Daddy who take care of them … C and I are very co-possessive about our children *grins*). B & C are keeping me posted, but nothing much has changed as of yet.

xoxo

This is the “Lipton Ten,” stolen from Tara R. over at If Mom Says Ok

1. What is your favorite word?
Goober.

2. What is your least favorite word?
Hate.

3. What turns you on creatively, spiritually or emotionally?
Things that inspire emotion.

4. What turns you off creatively, spiritually or emotionally?
Boredom

5. What sound or noise do you love?
The happy voice of my tween.

6. What sound or noise do you hate?
Tween crying because someone hurt or upset her.

7. What is your favorite curse word?
Fuck!

8. What profession other than your own would you like to attempt?
Event planner, owner of a small diner, therapy center for children.

9. What profession would you not like to do?
Sewer cleaner

10. If Heaven exists, what would you like to hear God say when you arrive at the Pearly Gates?
Welcome home! (Tara, excellent answer)