On October 29th 2011 it snowed.  I took Zoë (just 7 days old) to the windows, and showed her the snow.  It was Zeppo's birthday.

On January 28th 2012 it snowed.  The day of Zoë's Benefit Dinner thrown for her in my home town by very dear friends.

On February 23rd 2012 it tried to snow, but only sleeted.  It was the day of Zoë's surgery.

On March 31st 2012 it snowed.  And Zoë is home.

It could all be coincidence that it has snowed on these very special days.  Perhaps it was Zoë's doing.  Or maybe Nature saying, "Hey Zoë."  Maybe because she was in surgery for 14+ hours she did not have the power to make it snow...so we only got sleet.  Who knows.  Maybe I am just a desperate mother looking for a connection to the life in my arms, and the world around me.

What I do know is that I love snow.  I know that most people hate the snow.  But for me I have always loved it.  Maybe because I was born in January, or because I am from New England.  But snow days have always and will forever be some of the best days.

What a snow day to me is, is a day that Nature says to us, "Hey you, slow down.  Take a break.  Have a day off.  Warm up indoors with a friend.  Catch a cool breath of air in your lungs and feel alive.  Catch a flake on your tong and laugh.  Call up friends and play outside.  Hug your loved ones to keep you warm."

Most people bitch.  I go out and drive in it.  I love that feeling when you cannot tell if you are moving as your headlights cut threw the dark and snow.  Or how it looks like you are traveling in space between the stars.  I love how the flakes when dry float over the windshield, and when wet stick there in a big splat until the wipers wipe them away.  I love the feeling of the car sliding, and how I with out thinking I can ride out the slide, and pull back into lane.  I love going to parking lots, and doing donuts (even though you are not supposed to).  I love that when I first got my license I brought my little brother with me and let him drive in the snow at the middle school parking lot...and we did our best not to hit the poles, and miraculously we did not!

So you have to shovel.  Tough.  It is a great work out.

So you are cold.  Good.  Go and find a warm place, and appreciate that you have a warm place to go to when so many don't.

So you are late to work, an appointment, or it changed your plans.  Well at least you have plans to make, and appointments to be at.  Just call ahead, reschedule, relax...really it is not a big deal.

Snow days are to be treasured, especially by those who are lucky enough to get them...just think of all of the people out there who don't get to experience the full range of seasons.  I think it a shame.  As the seasons turn I cannot wait for the next one.  Especially when Fall hits, and I know right around the corner is winter...and snow.

This post is brought to you by the calming effects of a world quieted by snow, and the amplification of nature that it so generously provides.

Love and Hugs!

Good Morning!

Last night was amazing! To bring my baby home. To sleep in bed with her....oh how good it feels.

Here is a beautiful song that I have not been able to get out of my head since bringing Zoë to the ICU. I would sing it internally as to not upset Zeppo...but yesterday I felt compelled to play it for Zoë.

This morning I take comfort in knowing that Zoë is not afraid and with her strength, neither shall I.

As it unfolded:

8:00 PM 3/30/12

We are riding high on MA90 Statie flashing and making noise. A parade in Webster will soon follow! Zoë is going home!

9:00 PM 3/30/12

Zoë is home.

Thank you to the Statie. Before we reached exit 2 three more Webster police cars lead the way. At the end of the exit ramp the Webster Police SUV blocked traffic and then followed us. Soon after another car pulled up behind.

The blocked traffic in both directions and Zoë pulled into the driveway. The whole neighborhood was lit up, our neighbors were probably crapping themselves...especially the ones having a party.

Zoë is now in our bed. Trying to sleep...and soon shall I.

On October 22, 2011 at 1:08 in the morning Zoë Faye Young was born into the world from a womb with out water.  She was immediatly whisked away from her parents to be stuck with needles and have IV's placed for antibiotics.  She spent the next month with colic, keeping us up late, and forever searching for a way to make her happy. 

On December 26, 2011 we found out that for several days, or weeks a cancer had taken over her body.  And she began her long night.  Her long fight with herself.  Because ultimately what cancer is, is your own body turning on you.  It is one cell that decides it wants to copy wrong, then copy over, and over, and over, and over....

Zoë had line after line, after stick, after arterial line, after PICC line, and broviac placed.  She has had more dressings, and tape, and nephrostomy tubes, and catheters, and surgeries, and breathing tubes, and pain.  More pain than most could bear.  But she has handled every step with a grace, and determination that is astounding.  It is as if that first IV placed at birth was a way for her to know what her life would be like.  As if all the pain of colic was a way for her to know what belly pains would come.  Like everything was preparing her for the next big thing.

Someone posted that Zoë is a very old soul.  I did not think of it that way until now, but I agree.  When I was in college a very dear friend and I would often discuss the age of people, and how we are all older or younger than our actual years.  She is a very old soul, and I was described by her as a soul that may have had a few trips back, but I am still very young.  Well...Zoë is clearly an old soul.  The knowlege that is behind her eyes, the knowing that she has always had.  The ability for her to speak to me with out words.  The way in which in the face of pure physical horror she is able to not only bear it, but thrive.  To grow.  To learn.  To adapt.  To wake up everyday and stretch out arms up, and legs out, and smile.  That ability must only come because she at one time must have lived a beautiful life. 

People keep telling me that she is here for a reason.  Yes.  Yes, she is.  She is the face of childhood cancer.  She is the face of rare cancer.  She is letting people who otherwise never gave a thought to cancer research a reason to care for a cure.  I have friends who never thought this kind of cancer ever happened.  Or "who knew cancer got 'smart' and would stop being affected by chemo."  Zoë is giving the world a wake up call.  She is saying LOOK!  LOOK AT ME.  LOOK AT HOW BEAUTIFUL I AM.  LOOK AT HOW FUCKED UP IT IS TO HAVE CANCER!  DO SOMETHING! DO SOMETHING DAMN IT!

I could write my blog....thousands of words, and not have one person listen.  But I post a picture of Zoë and the world reacts.  People around the world are crying and pleading to save a little girl they have never met.  I did not do this for her, my husband did not do this....this reaction to our situation is not because of us.  It is purely and solely because of Zoë.

My mother always remarks about how Zoë has the ability to attract people to her.  She is like a beacon, she has a light inside of her that is so bright that it shines brighter than the sun.  People caught in her rays are captivated.  They are mesmerized by her...and that is all her.  It is breath taking,  It makes me unable to describe just how awed I am by her. 

My husband and I perhaps being in her light so long are blinded.  We are unable to see anything but her. 

I believe that every person who crosses our path shapes us.  They are there to learn a lesson.  When you start to date in life, you get your first boyfriend, and you love, and you breakup.  And there is a lesson in that breakup.  Then you date again, and you hopefully using what you learned before do not make the same mistakes again.  Then you breakup for other reasons, and you learn another lesson, and you go out and you find someone and you date again.  The goal being that when all of your lessons are learned hopefully you will find the right person for you. 

Lots of people say after a breakup, "I wish I never met _______."  I have never thought that a day in my life.  Everyone I have loved, everyone I have been friends with, everyone who I interact with even on the most basic of levels is important.  I have always tried to learn from those relationships, and I hope that where I have failed, and where I have hurt someone in the past, I hope I have learned and I have not done the same things to someone else. 

Well Zoë in her 5 plus months has taught me more than the all of the lessons I have learned from all of the people I have ever met in my entire life. 

She has taught me not to be afraid of pain when I bore her.  She has taught me how to love more deeply than I ever knew.  She has opened my eyes to a world that is so beautiful.  She has shown me that people are giving, and can be selfless even in such a selfish society.  She has taught me that I have more energy than I knew I had.  She has shown me not to be afraid to die.

I have always been petrified to die.  Sometimes late night I would lay in bed and just think, "what if this was it."  I would cry, and think I am so not ready, I have so much I need to do. Almost always on my list of what I needed was to be a mother.  And now I am a mother, I will always be a mother. 

I still fear death, because now I have to live for two.  Being a parent is exhausting work because you are living for yourself, and your child.  Everything you do in a day you have to do for yourself and your child.  Or your child, then yourself if you have the chance.  You feed them, and clothe them, and wash them....and it is exhausting.  I have been living for two since before I conceived Zoë.  It has not always been easy.  I have had my weak moments where I would have that second bowl of ice cream rather than a salad and a well balanced meal.  But all in all I was living for her...now I will continue on living for her.

I told my brother that when Zoë was placed into a remission status that I quite frankly wanted to get so fucked up that I would have to be mopped up off the floor.  Well the other day I told him that now...now all I want is to live every moment to its fullest.  To not miss a second of my life.  Even if it means suffering through what I am I need to do it with a clear head, and open eyes.  I cannot look back on Zoë's last days and not remember every second of her.

Maybe that is why I cannot sleep.  I have barely slept for days.  But I have more energy than I know what to do with.  My mother suggested a sleeping pill.  Well maybe there will be a time someday for that...but for now I just want to keep my eyes open.

Zeppo and I have decided that along with a traditional funeral we will be sitting our own version of Shiva.  This for those who don't know is a Jewish tradition of gathering for seven days with family to mourn.  After the seven days the family goes for a walk to signify that they are reentering the world and that they are no longer in mourning. 

I decided I need this.  When my grandmother, my Memere passed away it was in my senior year, second semester of college.  I drove 85-95 miles an hour the night of her wake from Philadelphia to Pascoag, RI.  I had only an hour or so before we left the funeral home, and then had the funeral the next day.  The following day I drove as slowly as I could back to school, and immediately had to begin class work.  Thus preventing me the ability to really mourn her loss.  Instead for years, and years, and years I could not speak of my Memere with out crying. I could not cope with my loss, and although I make my best attempts to visit her grave I still feel like I did not give her the time in my heart and mind that I needed to give her.

I will not have this happen with Zoë.  I know that I will need extended time to mourn, and I need a way to signify that it is OK to reenter the world.  Shiva will help me do all of that. 

We will post, or have someone post the calling hours for Shiva and we open our home for a number of days to be determined, to those who need to come and mourn with us.  There are some "rules" or ways about Shiva that you can read about on Wikipedia, or other online sites, but basically as it has been explained to me is the following.  When you arrive to our home you do not have to greet us.  We may not want to greet you, or we may want to greet you.  It is up to us to approach you.  Our home is your home during this time.  So be comfortable in it.  You do not need to ask our permission for anything.  You also do not need to ask us what we need.  We need you to do what you need to do for you.

Everyone mourn is their own way.  Some need to talk, some need silence.  Seek out those like yourself and morn together.  Some need to do "something".  If you need to cook, cook.  If you need to clean, clean.  If you need to run, run.  Do for you what you need to do, and in doing so you will be doing what we need you to do, for us.  Just please don't ask us what we need.  We will do what we need to do.  We will ask when we need something.

Yesterday was one of the most beautiful days we have had with Zoë.  The gift of going out side with her after being in this hospital for days was wonderful.  I as most of you know am not a baseball fan.  But by going to Fenway I got to do something with Zoë that I needed.

As you all know Zoë loves her balloons.  From the first one that Louisa gave her, to all the other ones she collected.  We don't have her original balloons with us, but we were given some from the nurses on 6 East, and I went and bought my baby a ridiculous amount of balloons, and together Zeppo, and I watched as Zoë, with much hesitation, and encouragement to let go....let go of her balloons from left field of Fenway Park.  I watched until I could no longer see them, then asked in what direction they went.  Well they went in the direction of Rhode Island.  Zeppo and my home towns.  It made me cry.  We attached a note, and maybe someone someday will find it.

I wish I could launch a thousand balloons...a million balloons.  So I would like when the time is right to have a balloon launch for those of you who are unable to be here with us, and who feel the need to do something.  We will do a balloon launch at her funeral, and we will give a time, and we would like you to find a beautiful place with wide clear sky to let a balloon go with a note telling Zoë's story, and a link to her website for people if they find the note to let us know that they have read, and learned about our baby.  Please hand write your note, please place it in a plastic bag with a zipper to protect it from the weather, and attach it to the balloon with care.

Just as I finished writing that last paragraph Zoë woke up, and ate.  We fed her, and now she is playing with her tubey-toy.  We told her all about the balloon launch, and she grunted in approval.  It made us laugh, it made us tear.  But it will not make me cry...because I still refuse to cry in front of her.

All for now.  Off to play with my baby!

For those of you who are not able, or have not been following our Facebook accounts:

We were told yesterday that Zoë's cancer is back with a vengeance.  It is taking over her body in such a way that there will be no cure, no remission, no hope for her beating this cancer.

Her body is failing her.  She knew this days ago and somewhere deep down inside so did we. 

Zoë stopped nursing, and she slowly became more and more ill since Friday, By Monday when we brought her into Clinic she was lethargic, and it brought back instant memories of December 26th all over again.  She was admitted to Children's and we thought originally just for observation, some fluids, and then maybe to start her next round of chemo early.

Monday night Zoë had an ultrasound which showed that her tumor had a re-occurrence.  An MRI on Tuesday showed that it was not only in her abdomen, but also on her diaphragm, and lungs.  The tumors are inoperable. 

Her body is having a hard time balancing the calcium that the tumors are making, and this is stressing her organs, and her heart.  The tumors are also beginning to put pressure on her heart via her lungs.

She is slowly being taken over.

The cancer got smart.

Chemo drugs would only delay her passing by a few days, or weeks, maybe a few months, but there isn't a cure. 

We are currently waiting for a second opinion, to make sure that we have not left any stone unturned in the care of our child.

I don't want her to be in pain.  I fear her pain.

I want her home with us.  Surrounded by love, between her Mommy and Daddy, in our bed.

I cannot thank you for all of the prayers, and pleas for a cure, for remission, for an answer to this tragic situation.  But now please don't tell us that there is hope,  Please support us, and with your prayers and white light, and love help us guide her into a better place.  I want her energy to return to where it came safely, and I want her to come back to us in other ways.  As she will always be apart of our lives.

She will join her lost sibling and their energy will for ever be together.

I am unable to eat.  To sleep.  To project out and know what is coming like I have been able to do all along.  I know that Zoë's odds were always stacked against her.  If only we could do a body transplant.

I have given her my blood, my bone, my nutrients, my anti-bodies, my heart, my life, my energy, my breath.  I bore her with great pain, and with great pain I will give her a dignified path onward. 

She is not going silently into the night.  She is still opening her eyes, and looking around, and she refused sleep last night quite a bit.  Like she has all a long.

My farther once said to her, "I don't blame you kid for not wanting to close your eyes, there is so much to see.  We can close our eyes when we are dead."  He said this before we knew of her condition.  He was so right.  I have wanted to show Zoë the world.  Perhaps that is why the other morning when she could not sleep we went on our little tri-state road trip and watched the sun come up together.  I have watched more sunrises since her birth, and they never cease to amaze me in their beauty.  This world is a more beautiful place for having Zoë been apart of it.

With all my heart, my soul, my being.  I LOVE YOU.

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*

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!

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.

There was no blood lost during our epic adventure to The Jimmy Fund Clinic yesterday…but there was some blood needed.  Here is a recap:

So, today the Young Family will be traveling off to the Jimmy Fund Clinic in Boston for Zoë's post-chemo weekly check-up. Our clinic day is Wednesday, so every Wednesday from now; until she is done with chemo we will make this trip.

Being home has been AMAZING. I cannot get enough sleep. I nap as much as I can, and with Zoë sleeping through the night I get at least 7 or 8 hours then too. I feel like I am still catching up. The first night home I was jack-knifed across the bed, and no matter what position I was in it was SO comfy.

Zoë is a total rock star. She has been feeling way better since Saturday, and is even coming off of her feel better meds. Her belly is soft, and she is being plumped up with fat formula and plenty of nursing. We took off her bandages the other day, and her scar is barely there! It is amazing the job that Dr. Shamburger did. 

We are working on getting her OK with being on her stomach, or even being held against us facing us. She does not like it. I don't know if it is because she has not really ever done it, or if it hurts... So we are taking it very slow.

I started back to work yesterday working from my home office/art room for four hours. I hope to get in eight tomorrow, and on Friday I will split my day and go into the office for a bit. How strange it is to be working again.
But I have a new project to jump in on, and it is a development project for NOAA. I love that kind of work, so it is nice to return to a fun project.

Well I am off to pack us for our trip to the JFC. 

(Arriving at the Clinic)

We grabbed a quick bite to eat, as did Zoë then we were off for her blood work, and dressing changed for her Broviac.  After a short wait we discovered that Zoë needed a blood transfusion.  This made our “quick” trip to the JFC into a much longer adventure to include time at CHB.

(Arriving at 6 North at CHB)

We settled into a shared room with a little 18 month old boy.  His family was wonderful, and we were able to relax while waiting for Zoë’s blood to arrive…

 (Just as the transfusion was coming to an end…)

Zoë is raising hell here at CHB. Maybe it is because we are on 6 North, and not 6 East.  Maybe because she
found out we were not staying the night.  She got her blood.  Had her catheter pulled...then needed it readjusted by the urology doctor.  She got night meds and PUKED them all up, and pulled out her NG tube all at once.  Covering both Zep and me in vile med puke. Had her NG tube re-put-back-in, then an X-ray to check its position. Also got the cap or end of her Broviac changed... We are now waiting on the X-ray results and she will get a dressing changed on the NG tube, and more meds before we go. Oh....all of the above happened in an hour too!

Is it bedtime yet? Nope. Zoë is wide awake. I have no idea how her roommate is still asleep!

(Post Second Round of Meds)

The second time I got to give Zoë her meds.  I think the nurse was scared to make her puke them up again.  I
actually withheld the Vitamin D when I found out that it was a crushed up pill rather than the liquid form of the vitamin that she usually gets. I have a feeling that it was the chalky pill that caused her to puke, because after the second round of meds she kept everything down, nursed, then was off in her stroller and heading home without any further puking.

Next time we go to the Jimmy Fund Clinic we will be bringing all of her meds with us…just in case…

We arrived home around Midnight, and all of us crashed out for the night…  *Smiles*

I am not surprised at all that Zoë needed blood.  The chemo is given to her in her blood stream, and the goal of chemo drugs is to destroy cells.  We want them to target Cancer Cells…but until we have drugs that will only destroy cancer in the mean time they will destroy all kinds of cells, to include blood cells. Being that the chemo is racing around her body with her blood it is not a surprise that she is blood low.  What was surprising was that she was not immune compromised!  Her immunity levels are already on the rise, which means that she will be ready for more chemo on time, as long as she continues to do such a great job.

She did get donor blood from some special people.  So THANK YOU special people.  I know that there have been a few people trying to donate to her, and we did not get their names on her list in time.  I am SO sorry about that. 
It is not easy some days to even have the time for a phone call. If you find that you are not on her list when you go to donate please have them call me.

This post is brought to you today by the power of silence, as Zeppo and Zoë are off on an adventure of their own
today to Rhode Island.

Love and Hugs!

P.S. It was so wonderful to see all of our 6 East Nurse Friends!  I hope you all have a wonderful few weeks and we will see you the 28th of the month for more chemo!

So Zoë reached 10 pounds this week!  Yay.  She is FINALLY napping today.  After 4 days of chemo she is really
feeling like crap.  I am exhausted, but know that she is done getting the chemo into her...so now just the wait and watching until the next round in a few short weeks.

I have so much that I should be doing right now...  But a Nap sounds like the best plan of all.  :)

Love and Hugs!

(Written 3/5/12)

For many days our lives have been filled with tiny leaps forward for Zoë. She has had the JP Drain removed from her side, along with the nephrostomy tubes. She is being fed by an NG tube again (the tube in her nose to her stomach). The only tube that is temporary and still in place is her catheter, which will stay in until her chemo is over to protect her bladder from the effects of the chemo drugs.

I have taken a break from writing the past few days. I believe for several reasons. One being pure fatigue, both physically, and mentally. But also to catch my breath. Reading back on what has happened in the past few days, weeks, months…wow! My life has been flipped upside down, rerouted, detoured, and we don’t have a mapped out
route for where we are going next, but it will be a very interesting journey I am sure.

There is something so important about silence. I have been contacted by several people in the past few days asking about Zoë, and being concerned that I have not written in a while. Please don't ever take my silence as bad thing.

Growing up my mother would often times sush us, or tell us kids to be quiet. It was as if any little noise was too loud, or bothersome to her. I now understand her need for silence, both as a mother, and as someone with a very loud life. My search for silence started when I was in college. When I would walk to the train station I would put on my headphones, but not music. I would pretend as though I could not hear those around me, and just listened, and
took in the environment of the city around me. Later in life after moving back up to New England I began driving long stretches with out music, or NPR, and it would only occur to me, upon arrival, that I did not turn on the radio during my travels. The silence was not quiet, because it was filled with thoughts in my head. Now, the greatest time of my day is my shower. I get to both reflect, and meditate. I try to create silence both in the space I inhabit, as well as in my head. It is not easy to calm my thoughts, but I do my best.

I once listened to an interview with Anne D. LeClaire a woman who practices total silence on the first and third Monday of each month, and has done so for over seventeen years. Her book Listening Below The Noise is a semi-memoir and part philosophical inquiry about silence, and how it can help us with the world around us. I think I will pick up this book when I am done reading my current book. I don't know if I will go as far as Anne, and go a full day with silence. But I think that I would like to plan for at least an hour or two every week to dedicate to silence. 

Today Zoë will be getting her fourth round of Chemo.  She was to start this morning, but like all things in the hospital the orders took longer than to be expected, and she will not start until this evening.  I am so very nervous and anxious.  I cannot wait to kill off the last bits of this cancer, and banish it forever from Zoë’s body.

In order to prepare for her next round of chemo I have been doing my best to get as much sleep as possible, as well as some exercise (walking around the hospital), eating at least two meals a day (trying as hard as I can for three), and I even managed to leave the hospital for a few hours the other day for a manicure and pedicure. Boy did that feel good!

Zoë has been working hard at healing from her surgery, sleeping, and eating.  She is not quite back to her normal self yet…but what is her “normal”?  She is sleeping through the night, which is GREAT, the feeds that she is on are not making her backed up or constipated (YAY!), and her belly is not distended anymore.

(Written 3/6/12)

This morning Zoë woke up making a pouty face.  She was not really crying, or acting hungry.  She just seemed like she knew she was not feeling well, and did not know why.  It broke my heart.  I was nearly in tears to see her feeling so crappy.  But I caught myself and refused to cry in front of her.  She did not need to see that I was also feeling crappy about her feeling crappy.  Those downward spirals are not helpful.

It looks like Zoë will be heading home this weekend. Zeppo and I will be back to learning new things, like administering IV antibiotics, and we will be watching for any changes in her from the chemo, such as mouth sores, possible dehydration, and loss of coloring that could mean low blood counts.

We are also working on getting Zoë covered under Mass Health.  She is only partially covered at the moment, which is not going to help much with one major gap in our health plan.  We only get 20 home nursing visits a year under our family plan. Zoë will burn through that in no time.  Mass Health should help cover the expense of home nursing.  At least I hope it will.  I don’t know yet how much a full time visiting nurse costs, but my guess is it is not cheap.  Even if she comes to the house minimally it is still at least one or two days a week that she would have to come. Ugg….

So yesterday I managed to go for a walk while Zeppo and Zoë napped together. 

I decided to walk over to the new Dana Farber Building where there is a beautiful indoor garden and quiet spaces. I
got a great sandwich and enjoyed some quiet time in the garden. I plan on going there more often to refuel my stomach, as well as clear my mind. I love that the space is also cell phone free, and no food, and is meant to be a quiet place. Hum....maybe I found my place to be silent after all...

To occupy myself this time around at the hospital I have been doing a lot of crocheting (special projects that if
finished will be at the Rock for Zoë event on Saturday *wink*), watching some White Collar (when Zoë is passed out), and taking my usual extra-long extra-hot morning shower.

I also plan on taking the Shabbat Elevator this Friday, or Saturday. For those of you not in the know on the Jewish Sabbath (Shabbat) you are not supposed to work. So pushing an elevator button can be (for some) considered "work". Therefor there is an elevator dedicated to going up and down to each and every floor, all day from Friday sundown, to Saturday sundown. 

I don't plan on taking this elevator because I have all of a sudden decided to be Jewish. Although I believe I may be adopted by the faith, hehehe. No. I am working on my patience, and learning to slow down. I find that there is always a reason for me to rush, especially lately. I have always been someone who will  plan my time out well enough to not have to rush. But lately with Zoë needing me, and by needing her I find myself in an anxious rush the moment I leave her, until I return. I need to work on allowing Zeppo the time and space to be the amazing father that he is, and I need Zoë to learn that her Daddy will care for her just as well as her Mommy does. I need to learn to enjoy the time that I have away from her, and to not be in a panic from the moment I leave her. So... this coming Shabbat I will begin to practice the art of the slowdown. I will ride the elevator, and as it stops on each floor I will remind myself that it is ok to be gone another minute longer, and another minute longer, and another minute longer.... I will calm my mind, and in silence summon the faith and trust I have, and know that Zoë is OK, even if I am not there.

Well... I am running out of yarn fast, and I may today try to find a place to pick up some more. It will be good to drive my car (after about 15 days of not driving). Man…what a time warp. Zeppo mentioned that he has been at the Ronald McDonald House for two weeks…where did that time go?

Well off to find that hot shower, and maybe my car keys!

This post is brought to you today by Zeppo. Thank you for watching Zoë and giving me the time to write.

Love and Hugs!

(Written Later on 3/6/12)

P.S. I did manage to depart in a car from CHB this afternoon. I did not do as well as I had hoped with my panic to return to the hospital. But I think it had more to do with the idiots on the road than my anxiety about returning to Zoë.