Santa-cycling

I have come up with a new theory to cure the over-population of toys. Even before Christmas we cannot seem to find our livingroom floor. So, my idea is, Santa should have an exchange program. Leave one new toy but take five old ones with him when he goes. I believe parents everywhere would get on board, and it would be a hit with both the Supernanny and Hoarders.

Art Prize 2010 look out!

Aaaaaand Here We Are

There is simply too much to put into one post. See
www.mandameow.blogspot.com for the story of Azure's cancer journey leading
us up to this point.

She is healthy.

She is HIGHLY ENERGETIC (!!!!!)

She is and always will be amazing.

Azure/Amanda
Blue/Meredith

Nice to meet you. :0)

Vampires Strike Close to Home

I was listening to the audiobook "Breaking Dawn" the other day, the final in the Twilight series of Teen-Vampire-Angst. **SPOILER ALERT** What hit me the hardest was not the end of the story, not saying good-bye to the characters. I was blind-sided by the traumatic birth and the fact that, following the birth of her baby, Bella was separated from her, for the baby's own good. Later, she has to go meet this baby who she doesn't yet know as her daughter, a stranger.
THAT'S HOW I FELT going into the NICU for the first time!!!! My daughter was shown to me for a fraction of a second before being whisked away to the NICU (with good reason of course) and T and I were left in the room alone. Hours later we went to meet our daughter. We were taught how to scrub in, put the hospital gowns over our street clothes and lead into the room full of brightly lit isolettes and warming beds. HOW DO I KNOW WHICH ONE IS MINE? I didn't know my own daughter, the one who had been a part of my own body that very same day. I had to rely on a stranger to tell me which bed to go to. I didn't know what I would find, I didn't know what she looked like. All I knew was that, at that point, she was still alive.
THAT SUCKED!!!! I have a bit of a love-hate relationship with the Twilight series of books, but this particular story-line got my attention. I GOT it, because I had LIVED it.
*sigh* I think I need to go back to simple fun books like the Harry Potter series or Anne of Green Gables or something.

Azure Update January 2009

Well, let's see. I have not been writing here, as I said I would, basically
due to the lack of time/energy involved in doing so.

Let me bring you all up to speed on Azure's condition. She was diagnosed at
the end of June with a tumor in her liver that had already metastasized in
her lungs. Not good. Very, very not good. When the doctor looks at you and
says, "...but we always have hope" it is never good.

She received her first dose of chemo on July 1st. Since then she has been
going back and forth between inpatient chemo, which is a weeklong stay in
the hospital for her and myself, and outpatient chemo where she has to go to
the clinic everyday for a week. Running after an extremely active
2-year-old with an IV pole...not so easy. The good news is, chemo does not
effect toddlers the same way as it does adults, or even older children. She
has not had the nausea one would assume, just periods of being a very picky
eater. She did lose her hair and now has what one mother calls "halo hair"
which is almost invisible unless there is light casting from behind.

She had surgery in October to remove the tumor, the right half of her liver
and her gall-bladder. We were in the PICU for days following just to keep
her on IV pain meds. Remembering the desperation in her eyes when she was
in so much pain and I couldn't do anything to help her makes me ill. I hope
like hell she never feels that kind of pain again the rest of her life. The
pathology from surgery was not as good as we had hoped. They left some
tumor cells behind right at the edge of the resection and there were still
live cancer cells instead of all dead ones. For this reason and because of
the advanced stage of cancer at diagnosis they continued to treat her
aggressively with chemo. They are hitting her with the big guns that they
would have used later in the case of a recurrence. This meant back to the
schedule of alternating weeks in and weeks out of the hospital, usually with
a week or so in between to let her recover.

Along comes the week of Christmas. We learned that our collective Christmas
Wish had come true. Azure is in REMISSION! This means there is no evidence
of cancer either on the CT Scans or in her blood work. This is amazingly
good news and we celebrated the holidays with true joy. We had had enough
of 2008 and were looking forward to ringing in the New Year and good
ridance, etc.

Then she spiked a fever on New Year's Eve. Back to the hospital we went for
blood cultures, antibiotics and IV fluids. She refused to eat or drink and
felt down right crummy. They didn't want to let us go home until she proved
she would drink on her own, but she found the one and only thing she could
control herself is what goes in her mouth. She refused to drink. After two
days of turning down the IV fluids hoping to make her thirsty they made us
promise to push fluids and call if we thought she was getting dehydrated and
let us go home. She is feeling better now but lashing out at us in
frustration and anger in a way only a 2-year-old can do. She throws
tantrums with kicking, screaming, hitting, biting, etc.

It has not been easy. The past 6 months have been harder on us than the
3-1/2 months she was in the NICU. T switched jobs twice over the summer and
did not have vacation time available and we have health insurance through my
job which meant that I had to keep up 40-hour work weeks. Thank goodness for
my mother who provided both free daycare and took her to clinic appointments
and sat with her in the hospital when T and I both had to work. We are worn
out! People keep asking if we have thought about having another child yet.
Ha ha ha ha ha! (I actually have an appointment to speak with a surgeon
about either having my tubes tied or removing all but one ovary. IF we add
to our family it will be through adoption.)

Anyway, there is a light at the end of the tunnel. She has once again
proven herself a survivor. She lived through cancer, now we just need to
get her through the remainder of her chemo treatments without any infections
and we can move on to cancer prevention and follow up checks...for the rest
of her life.

Thank you all for checking in on us. The positive vibes are still working,
our girl is Amazing.

Unbalanced

My major issue right now is feeling unbalanced and a bit out of control (duh). I am being pulled in too many directions at once. I listened to my audiobook of the 7 habits this week (you know those highly effective people from the 90s) and I am trying to implement as much as I can.

 
The roles in my life that are the most important right now are: Mother, Wife, Employee and Self. The Friend/Relative one can come and go from day to day depending on the circumstances. Let's take a look.

Mother: Azure is crying more and asking for me. She needs me. She wants me when she doesn't feel well.  I want to spend as much quality time as I can with her. We are working on her ABCs and counting to 10 and she tries her hardest to sing "Row Row Row Your Boat". She can do these things with anyone. I can leave her in someone else's quite capable care and she would still be fine and she would still learn these things. However, she and I would both know that I was not there.  I told the social worker at the hospital this week that if she is just getting some lab work done I do not mind letting my mother take her and I can stay at the office, but when she is getting chemo it is different.  Even though the IV will drip whether I am there or not, it just feels like I should be there.

Wife: The house and my husband are both being neglected.  Of course it doesn't help that AF showed up this week.  I hear grumblings about this from T but actually, the reason AF is here this week is because I adjusted my pills the week we went to NASCAR so that she would not be an unwelcomed guest in our tent.  So, you see, I cannot win.  We are short with each other. We are doing our same cleaning, mowing, feeding the dog, getting by in the day to day of things but it is a struggle this time more than when Azure was in the NICU.  Thinking back, I was working part-time hours then hoping to keep my vacation days to use as maternity leave when she came home.  Now, since we have my insurance I need to keep my hours up around 40 and instead of a baby who only sleeps and eats I have a toddler who doesn't want to eat, who wants to watch Elmo 24/7 (which I cannot allow) and who throws tantrums (and throws her glasses and throws her food and throws her toys, etc.).  It is just a whole different strain than it was the last time.  I have tried a couple of times to arrange dinner out together so we could have some alone time.  We enjoyed the food and the conversation but it felt like the date was one more thing to squeeze into our schedule.  NASCAR was awesome and I am very glad we went but we came back and jumped right back into the work week and it has been full tilt since.  We stayed up late (10:30!) the other night talking.  I think we were starved for a quiet uninterrupted conversation. (This could probably said for the parents of any toddler. I am not saying that all of our issues are due to Azure's cancer, it is just a part of our lives right now.)

 

Employee: I want to name this one Valued Employee.  I know they value my work and appreciate what I do...when I am there.  They miss me when I am gone and are glad to see me when I get back to the office, even if I was only gone a couple of hours. *sigh*  I love my job, I love the people I work with.  I laugh out loud every single day.  It can be stressful, especially now that we do not have a receptionist and I have to pick up the slack there too.  I enjoy it.  It is the perfect opportunity for a workaholic like myself.  But, if I am going to be completely honest, the workaholic label does not fit quite as well as responibility-sponge.  T pointed this out to me during our quiet conversation.  I take on the load to do everything that needs to be done when in fact it does not HAVE to be me that does it.  There are others in the office who could pitch in.  If Azure were not sick I would not think twice about working the extra hours and taking it all on myself and showing everyone what I am truly capable of.  But...she is sick and as mentioned above, she needs me.  I keep thinking back to the saying, "When you're laying on your death bed you will not wish you had spent more time at the office, you will wish you spent more time with your family".  This is true!  I know this is true!  It is just SO HARD to step back and leave what looks like a pile of things I did not do.  I cannot be 100% everywhere.  It just is not physically possible.  This frustrates. me.

 

Self: I need to exercise, lose weight and sleep.  I need stress reduction in the form of quiet time alone and when I can afford it, a massage or facial.  I need these things.  I am not getting them.  I am sacrificing myself in order to focus on the three items above.  It is a losing battle.

 

Married Working Mother I can handle.  Married Working Mother of a child with cancer is proving to be a challenge. Time to get back into problem-solving mode.

A Bit of Whining

I have tried to start this so many times and I just do not know where to begin. How to write about something so terrible? The child I yearned for, worked so hard to achieve and almost lost to a premature birth is now battling cancer. It is not fair. It is not right. It is just wrong all over the place. What did we do to deserve this, as I know she did absolutely NOTHING to deserve what she has been through. It boils down to my own selfishness. If I had not pushed so hard for children, then we would not have gone through the whole IF roller coaster. If I had pushed harder for adoption, then we would not have gone through the whole NICU roller coaster. I would not have my beautiful curious hilarious girl, but she also would not have suffered everything she has in life. She must be a Buddhist for; all of life is suffering. Yet, she is so quick to forgive. She cries and tries to squirm away when I give her a shot, but when it is all over and that H*llo Kitty Band-Aid is firmly attached to her leg, she clings to me and snuggles against me because she is convinced that I will make it all better. She has more faith in me than I do.

 

T and I often spoke while she was in the NICU about which side of Karma we were seeing. Was it the bad side since we were living through the nightmare of hospital visits, ups and downs in oxygen saturation levels, ups and downs of feeding tubes and residuals, etc? In the end, we decided that it must have been the good side of Karma since she came home. Now, T is wondering if we are back on the bad side again. My theory is that maybe we are on the good side of Karma since we keep going through horribly shitty circumstances but coming out on top.

 

Did we go through infertility and the NICU to ensure we appreciated our child? Let me tell you, in our family, the sun rises and sets over this child. Is the cancer a way to make sure we do not start to take her for granted? I cannot even begin to explain the emotions that go into creeping on tiptoes into your sleeping baby's room to check that she is still breathing. You are straining your ears for the slightest sigh to relieve the fear that this is the time that you will find her dead. Will it be this time or maybe it will be next time? You listen, holding your breath but unable to hear over your own thundering heartbeat. You get closer and closer, panic slowly rising, wanting to put your hand on her back to make sure that she is breathing, but gently and quietly so as not to wake her up! There lies the conflict. Make sure she is alive, but do not wake her up as you check. I cannot explain what that does to the psyche. The heart/apnea monitor alone did so much damage that it was MONTHS before we heard the microwave beep, or a truck backing up or certain cell phone ringers that didn't throw us into a panic even if she wasn't there at the time. We finally got over all of those things. We were settling into life with a toddler (as "settled" as that can be) and then cancer happened.

 

I am sad for her and for us. I am angry that there is no way for me to make this go away. As a parent, you swear no one will ever hurt your child if you can help it. I cannot help this. I can only hold her close and do what I can to advocate for her care. I wish I could spend more quality time with her but we have my insurance through work so I need to keep my hours up at full-time. They have been flexible with my hours and very understanding and concerned for her. I do get to go to doctor's appointments and chemo treatments. I wake her up and put her to bed every day but those are not her finest hours (Tired + Toddler = Tantrums). She is with my mother all day when I am at work. This is a fabulous arrangement and I could not ask for better care for her, but I miss her!

 

Blehck! There is so much more, and this seems to have rambled off track here and there. Suffice it to say, for now, this sucks. However, I do believe she will come out on the other side. I do believe that she will be a cancer survivor. I am just so sad that what we want for our daughter's third birthday isn't cake and presents and a clown or pony rides but more than anything, ever…remission.