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Desperately Seeking Normal

3/22/2012

3 Comments

 
What is a “normal” family?  A “normal” life?  How about, what is a “normal” Zoë?

This past week I worked at transitioning myself back to work.  It was a slow, and painful process for both Zoë and myself.  I don’t think Zeppo had much fun with it either.  So this week I am trying a more direct approach and just jumping back into a nearly full time work schedule.

This means Zoë is learning new things.  One, Daddy is a very cool Daddy, and he will probably come up with all kinds of fun things that Mommy does not do.  Two, that it is OK to eat from a bottle, because it is better to eat, than be hungry.  Three, that even though Mommy goes away, she will always come home.

Being back in the office feels so good.  I can logon to my computer, and go over my files, and projects, and engage a part of my brain that has not been stimulated in the past five months.  I have always loved my job, it is not just a “job” for me it is my career.  I have an amazing position, and I work with some of the finest people in the Coast Guard, and with awesome US Manufacturers.  It has always been exciting for me to go to work, and it feels so good to return.

Zeppo is getting to have a taste of what being a stay at home parent means.  It is probably the hardest job that he will ever have.  The physical, mental, and social toll is great.  But in the end he will get credit for shaping our daughter into being a fully functioning, smart, and upstanding member of society.

I am sure that people will comment on him being “Mr. Mom”, but he is not taking my place, or doing the “womanly” duties of a house hold.  He is being an amazing Father, and is supporting his family by caring for all the needs of the home.  The term “Mr. Mom” pisses me off.  Why is the father “acting” like the mother when he is caring for his child?  In this day and age when there are so many broken homes, absent fathers due to work obligations, or fathers who quite frankly don’t give a crap about their kids, we should give extra praise to those fathers who not only step up to the plate and parent, but parent in an involved way.

I also don’t think that a stay at home father should get any extra above and beyond praise that a stay at home mom would.  They are not doing more than a stay at home mom, they are doing the same very difficult job.  Both stay at home moms and dads deserve equal recognition for the job they are doing.

Our house is run by team work.  Every chore has equal value, because all chores need to be done in order to have a smoothly running home.  Do I tend to cook more?  Sure, I like to cook.  Does Zeppo take care of the trash more, sure.  But I will empty the trash, and he will cook if need be.  So taking care of the needs of Zoë should be handled just as equally as all the other needs of our family.

We don’t play the, well I did this, and you did that game.  Which cuts out a lot of drama.  We also get to have an equal amount of relaxation time, as neither one of us is over worked more than the other.  Which means we can go to bed at the end of the day equally exhausted.  *smiles*

So, now that Zeppo has me out of the way, and back to work he will be able to find his own rhythm, and schedule with Zoë.  He will be able to set naptimes, and play dates, and come up with all kinds of fun things to teach Zoë.

I will admit there is a part of me that is so sad that I am not home full time.  In a perfect world I think the parents should be home full time with their child.  I will miss out on some firsts I am sure.  But I miss out on them knowing that Zeppo will be there to record them, and let me know all about them.  We are so very blessed that we are able to have a parent at home with Zoë.  Especially with her condition, as she is unable to be in a day care situation with her current medical condition.  Zeppo and I planned on him staying home long before Zoë was born, and we adjusted our lives to make this happen long before we found out about her cancer.  I don’t know what we would do if we were dependant on two full time salaries.  I am glad we don’t have to think about it, and I feel for those who do have to think about it.

I don’t believe there is a “normal” when it comes to family.  Families are all so different.  But I think that we are slowly finding out what our “normal” is.  I think we will really figure it out once Zoë has completed all of her treatments, and is in remission.

I don’t’ know what a “normal” life is either.  But my life, if I separate myself from Zoë’s situation is also slowly feeling more “normal”.  I am able to call friends on the phone to chat a bit more, I am able to listen to more NPR, I am starting to see that I will be able to escape and go out and do things like see friends, have a lunch out, or maybe a date with my husband, and Zoë can be babysat.

Zoë’s “normal” is a whole other story.  I keep saying, “She seems more like her normal self today.  Whatever that is.”  Because really we don’t know what that is.  She was one and a half months when the tumor started, and before the tumor she was a fussy colicky baby.  Then she had cancer.  So on days when she is more smiling and giggly is that her “normal” or has she yet to really feel good, and we have not seen her “normal” yet?

Yesterday she had her catheter removed!  This means she has one less tube in her body to make her feel unhappy.  It should also help to cut down on possible urinary tract infections.  We have come to the conclusion that her brief fever was probably the start of an infection that was squelched quickly with powerful antibiotics.

Zoë met with her surgeon Dr. Shamberger and he again looked at her with loving care, squished her belly, and made the statement, “No one will ever know just how much work we did in there with that little scar Zoë.”  I could tell he took great pride in his work, and he was very pleased with her progress.  He will now watch her from afar as he will look at her future imaging, and hear about her progress from the oncology team.

Here is a picture with Dr. Shamberger, and his associate.  *Smiles*
Picture
Dr. Lee was very happy to have her catheter removed.  He was not in the office yesterday but heard all about her cystogram, and had his nurse practitioner remove the catheter.  There has been some confusion as to what a cystogram is.  Some thought that it was to look for cysts in the bladder.  Although this sounds rational, a cystogram is actually an x-ray examination of the urinary bladder, and ureters.  A contrast agent, or dye is placed through a catheter while a fluoroscope, or an x-ray unit picks up an image that can be seen on a screen.  You basically get an x-ray movie of sorts.  It is a moving image of what is happening in the bladder, and ureters.  The dye is pushed in to fill up the bladder, and if the patient has a leak or hole anywhere in the urinary system the contrast dye will be seen spilling out into the body.
 
Since Zoë had her ureter reconnected she has had 3 of these tests, and only yesterday did she not have a leak.  Now the next step for her is to have the stint that is in her right ureter removed. Oncology and urology will discuss when they would like this to happen.  It sounds like it may happen as soon as next week.

Our trip to see her oncologists was uneventful.  Zoë’s counts are doing great, and when asked by Zeppo how her teams of doctors feel she is doing Dr. Hong responded, “Oh, she is doing amazing.  We are all very happy with how she is doing.”  This makes us feel wonderful.

Our next big hurdle to come will be her radiation treatments.  We will be meeting with her radiologist in the next few weeks.  Our schedule for now is as follows:

March 28th Zoë will get her 5th round of Chemo (VDC)

After her 5th round of Chemo she will get imaging done to see just how much tumor is in her abdomen to determine her quantities of radiation needed.

Around April 11th she will get her 6th round of Chemo (ICE)

Sometime after round 6 Zoë will begin radiation (to be anywhere from 5-15 days, Monday-Friday everyday)

Three weeks after her 6th round of Chemo she will get her 7th round (ICE) approximately May 2nd.

I am guessing there will be more imaging done after the 7th round of chemo.

This all sounds so exhausting…and it is.  But!  We get to take it all one day at a time, and in the in between time we get to hug, and snuggle, and love, and watch our little girl grow.

To see just how fast she learns look at this!
Picture
This post has been brought to you by the Nuk brand of bottle.  Thank you Nuk!

Love and Hugs!

P.S.  Zoë and I celebrated her 5 Month Birthday a bit early yesterday by going out into the Garden at Children's.  We broke the "law" and went on the grass.  It was Zoë's first time out on the grass, and she just loved the feeling of wind on her face.
Picture
3 Comments
Colleen Joubert
3/23/2012 02:37:27 am

So glad normal is coming back into your lives. Zoë, those eyes look right through me, and I'm loving getting to know you. Keep up the good fight, my loves.

Reply
Aunt Lorraine
3/26/2012 03:48:56 am

Oh those eyes are those of a determined little warrior! Yeah Zoe!! The good doctor reminds me of my father....so it was love at first sight!Get those naps in.....sounds like you're going to need them. You're all doing a fabulous job and are thought of with love and as much positive energy as we can muster!!! Auntie Lo

Reply
Chasing Joy link
3/28/2012 11:52:52 pm

I do not know you but know of you from work. I am deeply moved by your strength and how you are honoring your daughter's life. I will keep all of you in prayer that you may be comforted.

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    Laura is Zoë's mommy.  Forever and Always.

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The Zoë Faye Foundation's mission is to provide support and assistance to children diagnosed with Malignant Rhabdoid Tumors, Atypical Teratoid Rhabdoid Tumors, and Non-CNS Extrarenal Rhabdoid Tumors, and their families; provide pathways to information, financial relief, and raise awareness for rare pediatric cancers, and funds for researchers who focus on Rhabdoid Tumors and related cancers with the hopes of achieving a cure.