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.
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.
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.
That was a really long way of saying, "Stay Tuned". ¶ 8/15/2008 09:07:00 PM 4 comments
Then things went wrong...again. Azure has been diagnosed with hepatoblastoma. A tumor in the liver. It is rare for children to get liver tumors but if they do get one, this is the most common one for them to get. About 10% of cases have metastasized in the lungs upon diagnosis. Guess what, we have "nodules" in the lungs. We started chemo last week and are looking at a good six months of chemo, surgery then more chemo. It is treatable...if we caught it in time.
I have thought all her life that we were living on borrowed time and that we were never really meant to have her. I thought we cheated death when she survived her birth, then again graduating from the NICU, then again when her heart stopped at home and I had to revive her from her worst bradycardia episode. Never, ever, ever take your loved ones for granted. I believe she can beat The Big C, but it will not be a fun ride.
I am working on a new blog to follow our journey through treatment. It has nothing to do with fertility and I will not handle it the same way as this blog, so I do not want to link them. If you are interested, email me at bluetrunks at sbcglobal dot net and I can get you the new information.
Thank you for your continued support. It worked wonders last time, hopefully the same will be true again. ¶ 7/06/2008 10:41:00 AM 20 comments
One day, one of them suggested I read two blog posts. One by GetupGrrl and one by ALittlePregnant, Julie. I read them both and laughed until I cried. I was amazed at this whole new world that had opened up before me. I started clicking through blogrolls and found SO MANY women who seemed to understand what I was facing. There were veterans and newbies and people with such varying interests and accomplishments. I lurked for about a month, posted a few responses here and there and then I dove in head first. I started blogging myself.
My number one reason for starting this blog was my own selfish need to journal. I didn't have the time, energy or privacy at home to do it in a hand-written format and I really spent a lot of time thinking while at work, and once in a while I needed to be able to vent those thoughts while still at the office. I thought a blog would allow me the access from home or office and there would only be this little side complication of the fact that ANYONE and EVERYONE could read it. I decided that if Grrl could keep her identity to herself, so could I. So, Blue was born. I cannot remember exactly when I started, I do not know exactly how many posts I have posted. I do know that I am so very thankful I had this blog when I needed it most. That, of course, would be when Azure was born. The support I received was overwhelming and the advice was priceless. If it had not been for reading A Little Pregnant and Miss W I would not have been even a quarter prepared for our time in the NICU. My husband was in awe of my composure that first night, but I knew what I was looking at. I knew what to do. I knew what to ask because I had been through it already, with Charlie and the Lowercase. (See? I have gotten so lazy I do not even provide links anymore!)
All these years I have felt the need to write and the even stronger need to read other's blogs. That is, until now. I have been unsettled, unsure of my way and I looked to others for guidance and direction. I do not feel that way any longer. It has been almost a month and a half since my last post. I do not feel the need, or even the desire, to write anymore. I hate to make it sound like, "I got my kid! Life is great! No need for the blog anymore!" On the other hand, that is sort of how it is. I have written many times that this blog was going to chronicle my journey to become the parent of two children. I swore up and down that I would not stop after one child because that was not the end goal. There would be so much more to the story! The thing is, there may or may not be a second child. I hope there is, eventually an adoption story. I would very much like Azure to have a sibling. The adoption though is third on the current priority list.
#1 - Get out of debt (plan already in action)
#2 - Move to a nicer house/neighborhood
#3 - Adopt
So you see, there is going to be a good 3-5 year wait from now until adoption talk and I just don't feel I can leave this blog hanging until that time comes.
The time has come for me to stop writing. I do still have my bloglines subscriptions and will continue to keep up with the handful of people I cannot bear to walk away from. I do hope those of you who have gotten to "know" me will keep in touch via email (bluetrunks at sbcglobal.net). I will leave the blog up at least for a little while. I have gotten comments from new readers on old posts, especially dealing with preemie issues and the NICU.
This has been something I have thought about a lot in the last couple of weeks. I keep coming back to the same thought. I have been a big fan of Stephen King's series The Gunslinger. In it, Roland, the main character spoke repeatedly about how things had been in the old days, but that the world had moved on. I think that is what has happened to me. I have moved on from my blogging. Like leaving therapy, I feel it has been extremely beneficial and I feel a bit apprehensive about it, but I think in the end, it will be just fine. I still have the message board with my friends who post on a regular basis (none of whom know about this blog, except possibly one who is also named Blue and who just hasn't told me she reads this out of respect for my supposed anonymity). I think I will be able to look back at this time in my life and tell Azure that without the wonderful support of the Internets, her mother would have fallen apart just when she needed to be at her strongest.
I will be lurking and commenting from time to time.
I will not say good-bye, I will say, "See ya 'round!"
Thanks for Everything!
Blue :0) ¶ 5/17/2007 11:47:00 AM 12 comments
