What is the percent of shrinkage when a mass goes from 8X8X8 cm to 8X7X4 cm?

Because that is what Zoë's tumor did after the 1/2 round of chemo!  BooYah!

So all of Zoë's doctors met this afternoon, and discussed the what to do next part of her treatment.  Here is the brief version (since I got less than 5 hours of sleep last night).

Zoë will have both nephrostomy tubes remain until after surgery.  The left one which is now clamped will probably be un-clamped during the next round of chemo to protect the left kidney and bladder from the affects of the chemo.  She will have the next round of chemo between tomorrow and Friday depending on how her labs and blood counts look.  The surgeon is booking a date for her surgery three weeks out from the end of this week!  If they don't feel she is ready by then the date could change.  Since it is hard to get time in the busy operating room it is a good idea to book now, and reschedule later if need be.

The surgery will be very rough on Zoë.  I already assumed that she would probably end up in the ICU (and quite frankly even if she is a rock star with the surgery I would want her in the ICU for the intense one on one care they can provide).  The doctor said that her recovery could take up to two weeks or more, depending on how well she does.

Things we still don't know after this MRI:
Where the tumor is originating from.
If the right ureter is irreparably damaged by the tumor.

New definition:
The doctors are now rounding with me a bit more, and in doing so I get to hear many wonderful scientific terms.  So here is a new one when discussing the drop in Zoë's immunity.  As you might imagine when charting her blood counts it creates a wave type graph, with the peaks being high immunity, and the valleys low immunity.  What the doctors are looking for is the Nadir.

Nadir- the lowest point of the curve.  The opposite of a zenith.

Since Zoë's blood counts can fluctuate while going up and down sometimes it is hard to tell if she is bouncing a wee bit up before dropping more, or if she had bottomed out and back on a rise.  So as the chart forms with each blood test (taken every morning), the doctors are trying to see if she hit her nadir, and is on her way up again.

Right now it looks like she may have, but there was a bit of a dip this morning so that is why she was not given the chemo today, and it may wait until tomorrow or the day after. 

So while I have my math geeks attention...riddle me this.

What is the ultimate tensile strength for a roll of toilet paper to allow for a person with an average pull rate to get the roll to revolve on an average dispenser with out getting a billion little pieces?  I seriously think it should be a rule that toilet paper must be able to hold itself together while being pulled off of a roll.

Ok.  Looking forward to falling asleep in the big blue chair bed.

This post is brought to you today by the power of math.  Making complex things easy to understand with awesome charts and graphs.

Love and Hugs from CHB!

So today was Zoë's MRI and MRA to get images of her tumor, and kidneys.  This is a big deal.  I understand looking at pictures of Zoë, and seeing her smiling and happy it is hard to remember that she is sick with cancer. 
Even for me there are times when I think, well it cannot be all that bad. It it is.  Everything about her condition is serious.

 An MRI or MRA for an adult is no big deal.  You go in with out any metal, and you lay still, get some images and go home.  But for an infant laying still is not really something they do.  Even when they sleep they twitch, and jerk.  So to get the images needed Zoë needs to get anesthesia.  She also gets a breathing tube, because some of the images taken require her to hold her breath.  Something again she cannot be told to do, so the doctors do it for her with the breathing machine.
 
She also needed an echo cardiogram of her heart.  Since chemo can affect the heart the anesthesiologists need to know what condition her heart is in prior to putting her under.  This was both painful, and very hard to watch.  The technician could not place the (Well I don't know what they call it, a wand?  The device that picks up the image.) in the usual spot on Zoë's chest because of the broviac.  So she had to press hard into Zoë's solor plexus.  I tried to comfort her with lots of sweet ease, and a pacifier, but even that did not work.  So for a half an hour I got to hold my baby down while a woman tortures her with that ultrasound slime goo, and that probe thingy.

After that torture comes the starvation.  Like adults, general anaesthesia is done on an empty stomach for infants, and for Zoë this is torture. Today she spent hours crying and so unhappy. I tried to distract her, hold her upright, and facing away from me, while watching a video of the ocean.  Walking, singing, strolling.  We even had a music therapist stop in, and he tried singing with a guitar....did not help.  Poor guy.  I did warn him that she was on food restrictions...  Nothing was working so I had to resort to letting a nurse take her and hold her. When I am holding her Zoë just gets mad because I won't let her nurse.  She also screamed much of her time with the nurses too...
 
The MRI team told me that Zoë did great.  No bad reactions, and they were able to get all of the images that they wanted.

Zoë returned from her test with a sore throat, and a bit pukeish.  But with some extra cuddles from Daddy, and Mommy, and some nursing she is now fast asleep.
 
Tomorrow is a big day for Mommy and Daddy since we will get to have a meeting with her doctors after their conference on Zoë.  Her entire team, from the Oncologists down to her the people setting up home nursing will be discussing where Zoë is in treatment.  Then they will determine what to do next for her.
 
I still think that surgery is coming soon for her.  I don't know if it will be after round 3 or 4 of chemo, but I have a suspicion that they will try for after round 3.  The faster this tumor can be removed the less of it there is to potentially break off, and cause more cancer elsewhere in her body.
 
So fingers crossed she will be getting her surgery in a few weeks.

So...what have I been up to these last few quiet days.

As you can see I launched Zoë's website:  www.teamzoecancersucks.com.  Yup just plugged the site. *smiles*  My plan is to start migrating my postings off of Facebook and onto Team Zoë.  I will not cut you all off cold turkey.  I will give you all some time to add her website to your favorite list so that you can get used to going there for my blog. 
(Disregard last sentance if you are reading this on Team Zoë.)  

The website has received so many wonderful responses.  Beautiful emails to Zoë that we are saving to show her one day.  I hope to make a little book for her so she can read what everyone has written to her.  Zoë's prayer map is filling in with people from all over.  I have only added people from my facebook page so far.  Tomorrow I will add people from Zeppo's page.
 
I have also been doing a lot of thinking lately about my current living situation.  I have decided that I am now a resident of Boston.  I think I can officially say that I have lived in Boston.  We are now on week 5.  

My accommodations are like that of most any Boston resident.  Cramped.  I have a one room, with a roommate.  She is noisy, inconsiderate, selfish, and wakes me up several times in the night.  She does not clean up after her self, and has way more stuff than I do, even though I am paying the rent.  Our rent is probably the most expensive in town for our square footage, however, we do have a wonderful cleaning staff, personal chiefs, on call maintenance, and all kinds of wonderful people who are willing to babysit.
 
Wow look at the time!  I am off to crash before it is tomorrow.  Oh, I cannot wait for that meeting with the doctors. 
I so hope that that tumor is down.  Even 5 percent reduction would make me happy!

This post is brought to you today by the wonderful people at the Ronald McDonald House.  This is where Zeppo is staying tonight.  Which means he will be here early tomorrow, and well refreshed.  Which will be a huge help for me.  Because I have a lot of t-shirts to mail out.  *smiles*

Love and Hugs!

I know that I have been rather quiet the last few days regarding Zoë and her status.  You should all take this as good news.  There has been much of the same the last few days.

Feeds:  Nutrition is still trying to plump up Zoë.  She was placed on 24 hour feeds at 30 calories an ounce a few days ago.  This completely stuffed her full to the point of major pukes and huge poops in the morning and at night.  So I got my way, and Zoë was reduced down to 18 hour feeds at 30 calories an ounce.  She is still puking a bit, but not as bad.  Mostly when the nurses give her meds on top of a feeding.  So we are now working to time meds in
between feedings.

As for her nephrostomy tubes:  There is a three way stale mate between Oncology, Nephrology, and Urology.  Each side has pros and cons, and no side seems to have an option that is better than the other sides.

Oncology:  Wants the left tube removed, and the catheter out.  They don't want infection, and feel like because her kidney is working properly it does not need to stay in.

Nephrology: Wants the tube to stay in, because they feel as though her kidney is functioning well, and since there is
the drain why not take advantage of it while she is having chemo to protect the kidney.

Urology:  Wants to place an internal tube between the kidney and bladder in order to not have a risk of the nephrostomy tube falling out, and to cut down on the risk of infection.

Oncology: Does not want the internal tube placed because of risk of infection during the procedure.
  
Nephrology: Does not care if the tube is internal or external, but would like the tube.

Urology:  Must just love looking at all of the charts and graphs of Zoë's kidney functions, and want more pee data.

Oncology:  Wishes that the tumor would just shrink, and get off of Zoë's kidneys already so they don't have to deal with Nephrology and Urology as much any more.

I just want a decision to be made all ready so Zoë can get that damn catheter out!

So the Oncology doctors keep coming around and asking the same question all the time, "How are you doing with staying here, are you OK to stay here longer?"  I respond with the same answer over and over again.  "I will be
here for as long as it takes for Zoë to be ready to go home.  There is no rush."

I believe some plans are starting to be made for Zoë.
 
What I know:
Monday Zoë will have an MRI to look at her tumor.  The goal is to get an accurate measure of how much it has shrunk since the second round of chemo, and to possibly learn more about where the tumor is growing from (either
the stomach wall, the right ureter, the bladder are suspected, but there isn't an answer at the moment).

Tuesday is the BIG meeting.  This is where ALL of Zoë's teams of doctors, including her surgeons will be meeting to work out a plan for Zoë.

What I speculate:
When Zoë was diagnosed the doctors told us the plan was 10 rounds of chemo, surgery after the 5th-7th round, then more chemo and radiation.  When we signed the paperwork for Zoë's second round of chemo the plan was reduced to 8 rounds of chemo, surgery, then more chemo and radiation.

Because we know her tumor has not only stopped (which at the time of the diagnosis the doctors just wanted the tumor to stop), but shrunk by 20% after the first round.  My guess is they are speculating that the tumor has shrunk again after the second round.  Perhaps enough to have surgery after the third round?  I cannot say for sure, but one of her doctors told me today that they are thinking to give Zoë her third round as soon as Tuesday or Wednesday of next week.

You maybe thinking wow that is so soon.  Well yes for two reasons.  One Zoë got only half the amount of chemo this last round as calculated for her size.  This was done because the drugs given were some serious shit.  There is not a lot, if any data on giving these drugs to an infant Zoë's age.  She is almost like a guinea pig in this sense.  So the doctors being extra careful gave her only half of what they thought she may be able to handle.  It turns out that she not only handled it...but her body barely even noticed that she had chemo.  Her white blood cell numbers dipped, but she did not go neutrapenic!  Because of this it looks like she is starting to bounce back again already, and the doctors think that she will be ready for more chemo next week.

So my speculation is this.  I think the doctors want to do the MRI, then if all looks good give her a round of chemo (the same drugs that killed off 20% of the tumor), then do surgery soon after once her numbers are up. 

If this is the case Zoë would probably stay in the hospital until she recovers from the surgery.  Which is why I think
we keep getting asked, "Are you sure you are OK staying here, are you sure you don't want to go home?" 

Again this is all speculation on my part.  So why am I sharing my speculations?  Well because I want to see if I am right or not, hehehe.  How are you supposed to know if I am right if I don't tell you my predictions.

So enough of that...on to the fun stuff...

Since Zoë has good blood numbers she is able to escape her room.  We have been partaking in many of the wonderful things the hospital has to offer.  As you know we saw some dragons, we also listened to a beautiful harpist, and Mommy played some Ms Packman (and discovered she is NOT good at it).  We have looked at the Dr. Seuss exhibit, and visit the fish several times a day.  Zoë and I also go up to the 8th floor to visit a new friend Pierce who is in the cardiac wing.

We found the hospital library this morning bright and early, and were the first ones in.  Only to discover that there are not many fun books there at all.  Well not unless you are studying to be a doctor.  But there are some big windows that look out to the garden, and a beautiful tree that we enjoyed for a while.

We also are getting some history lessons.  We discovered that Children's Hospital was one of the first to use a hyperbaric chamber to do open hear surgery in, before the iron lung was invented.
  
This hospital is truely amazing.  There is colorful art, and interesting facts everywhere.  We wander around and learn where the elevators go, and what is on each floor.  We have learned short cuts, and back ways, and encountered many dead ends.  I think that security must watch us on camera and wonder where we are going next.  There guess is as good as ours.

When we are in our room Zoë works on head and neck exercises, she cannot do tummy time, but she can sit up with my help.  She also does stretches two times a day, and "rides a bike" with her feet.  Speaking of feet.....at what point do cute baby feet turn into ugly adult feet?

When Zoë is asleep the last few days I have been working like a maniac to finish her website.  Oh I cannot wait to launch it!  I am just waiting for some pictures from the dinner, and I have one or two more minor things to work on...then I will be launching her site!!  *big smiles*  I have a tentative date of Saturday, but if I get the photos tomorrow, and work out the few small things I may have it launched by tomorrow evening....hint hint.  :)

Well Zoë is in dreamland....and off I go to join her!


This post was brought to you tonight by the power of hope.

Love
and Hugs from CHB!

Today has been a very long day for both Zoë and me.  She was pukie this morning and afternoon....but settled
out, and is now sleeping.  Other than that no movement to remove the left nephrostomy tube...

This is short and sweet because my sleep last night was also short and only semi-sweet.  So off to bed and EARLY too!

Night All!

So yesterday Zoë decided that she was not going to sleep at all from 7 in the morning to 10 at night.  During this LONG stretch of time I pulled out all of my mommy tricks.  The dancing, the singing, the walking around in the
stroller, the looking at the fish, playing with toys, buying a new toy (shhh...I am to allowed to spoil her).  Nothing was working.... then there was a magical moment around 2 PM when I decided to eat lunch.  We were eating in the main lobby and she was looking at an awesome Dr. Seuss painting exhibit when she started to drift off.  And just as her eyes closed....

DRUMS!!!!  DRUMS!!!! DRUMS!!!!

Two Dragons began dancing, and drummers drumming....and in slow motion I watched, as Zoë's lower lip stuck out, then curled down, then she shut her eyes, turned red....and let out a wale! 

It is the year of the Dragon, and in the Chinese Zodiac this is the luckiest year.  Zeppo was born under the sign of
the Fire Dragon, and this year is a Water Dragon. Water is represented of intelligence and wisdom, flexibility, softness and pliancy.  It can be cause for difficulty in choosing something and sticking to it when in over-abundance,
however it can be powerful (flooding, erosion, etc..)  Water governs the Kidney, Urinary Bladder, and is associated with the Ears and Bones!  It can cause fear, and anxiety, but also be calming.

Well isn't that all just too coincidental? 

Here my baby is fighting for her life in the luckiest year.  She is under a water sign, and it matches up with the same parts of her body that are being strained by the cancer, and the chemo.  I am not one to read too much into astrology...but sometimes you have to wonder.  Could there just be something to the zodiac?

So why not look further...Zoë was born under the Metal Rabbit.  Metal is considered to be firm, rigid, it has persistence, strength and determination. The metal person is controlling, ambitious, forceful and set in their ways as
metal is very strong; and they are self-reliant and prefer to handle their problems alone. The metal person is also materialistic, business oriented and good at organization and stability. However the metal person can also appreciate luxury and enjoy the good things in life. Just as metal can conduct electricity, the Metal person has strong impulses and generative powers and can bring about changes and transformations for those who come into contact with them. Well...if I was not a believer before how can I not be now?  Does this not describe my Zoë?

As determined as ever Zoë got her way, and we left the lobby even if I wanted to watch the Dragons dance and play catch with the crowd.

 Today was a nice quiet day.  Zoë only had one test (ultrasound), and she slept through half of it, and then fell asleep after the other half was over!  She slept for more than half the day, giving me so much time that I nearly have her website complete!

 The Game Plan:
Zoë's ultrasound today looked great.  This means that she will have the left nephrostomy tube removed, and the right one replaced.  When....who knows.  I thought that they were going to rush to do it this week, but then the doctors don't seem to be rushing.  In the meantime I wish someone would rush to get the catheter removed!  So I will be rushing the doctors in the morning.

Monday Zoë will have her big MRI scan to see how well this round of chemo is doing.  Lots of positive energy, and prayers between now and Monday please.  Tuesday the doctors will have a big team meeting to include, nutrition,
oncology, urology, surgery, and more I am sure, to get a more accurate game plan for her treatment.

The doctors are anxious to start planning her surgery.  Because this type of cancer is known to get smart, break off, and travel around the body.  The faster they can remove the tumor the less there is to get smart.  The issue is that
they still have not determined where this tumor is growing from.  They have some speculations, but want a more concrete answers.  The surgeons also need the tumor to be a more manageable size for removal.  

Originally the doctors thought that surgery would be involved after the 4th or 5th round of chemo.  Now that they are being brought into the conversation after round two which tells me that Zoë is doing remarkably well.  It pains me
to think that my little girl will be cut open, and yet I cannot wait for it to happen.  I am not yet ready to see her in post surgery pain.  I know what it is like personally and I hate to think of her having to go through it. 

My Game Plan:
I plan on doing some extra meditation, and soul centering before the day of her operation.  I found the chapel here, and they have meditation pillows!  *smiles*  To keep busy I also have the website to build (I so cannot wait to
reveal it to you all!!!!)  Paperwork to do....oh and taxes to figure out....  Anyone know a good tax person?  I was such a pro at the long form.  Then I got married, had a kid, and had a kid get sick all in the same year.  I have a
feeling that it will be a wee bit more complex this year than last...

Well folks time for me to drift off....and get Puff the Magic Dragon unstuck from my head....Maybe I will put it in your head instead....

This post was brought to you tonight by Peter, Paul, and Mary.

 Love and Hugs!

I have been writing in my head all day long.  Trying to find the right words, to locate an expression, or even the title to today's post.  But this post will remain with out a title I fear, because there is no way to sum up my thoughts and feelings.  I will then defer to some of my most favorite authors to speak for me.

“I can no other answer make, but, thanks, and thanks.”
~ William Shakespeare

Thank you!
 
Thank you to those who put on the dinner, the cooking, cleaning, the donation of the food, the donation of the Lodge, the music, the entertainment, the face painting, and henna.  Thank you for the T-shirts, the "Team Zoë" logo design, the buttons, the slide show of Zoë's pictures.  Thank you for the transportation, the babysitting, the hats, and the necklace.  Thank you for the raffle baskets, and all the wonderful items.  Thank you for coming out in the
snow....  Thank you for all of your donations, may they be time, money, or the power of prayer and positive thought.

I tried my best to sum up how I was feeling last night when I gave my mini thank you, and I don't remember what
I said really.  What I do remember, and what will always stick with me is seeing that room filled with so many people.  People who were friends of friends, relatives of relatives, people Zoë has never met, even those who I had never met before.  All there sitting quietly and looking back at Zeppo and I.  If I had arms big enough I would have embarrassed the whole room.  Yet again I weep.  Not for my daughter, but I tear up because I never knew people could be so good, and kind.  So generous and caring. 

Themes of the night:
There were many sentaments, questions, and remarks that were made to me by many people.  One of which was regarding my strength, and how if in my position they did not feel they would be able to handle it.  Well I think Kurt Vonnegut says it best....

"Shit happens, and it's awful, but it's also okay. We deal with it because we have to."
~ Kurt Vonnegut

If you were in my shoes you would find you inner strength.  There are two options you have when you find out your child has cancer.  You either fall apart, become a wreck, and become useless, or you buck up and do the best you can every second of the day.  I joked with many and said that I choose option two because I am way too fabulous to be a wreck.  OK so I only semi-joke.  Come on...I am soooo way too fabulous to be a wreck.  I guess having a strong inner ego is a good thing in my situation.  I do what I do for Zoë because I have to.  She is only as strong as
her support system.  She would not be doing as well as she is if I was crying all the time, or unable to laugh with her.  It is important for her to see me happy.  So when I need to break down (and I do), I do it away from her.  I call
someone, I hug someone, and I go on facebook and I trade my fear-tears for some joy-tears.  Then I go and kiss my little girl, and reaffirm my belief that she will be just fine.

I was asked about support groups.  Parent groups.  No, I have not joined any of these online, or through the hospital.  I fear getting involved with a group of people who are angry, or jaded, who are looking to place blame for their sick child.  I do have a lovely woman who I have emailed (and hope to email more often), who is unfortunate to have a child afflicted with cancer as well.  She is a friend of a friend, and has been a wonderful support even if we email only a few times here and there.  My support is my friends, family, and rapidly growing extended community.

I was asked how it felt to be away from the hospital after nearly a month.  I now know what it must be like when a convict is released from prison.  It is surreal.  The world looks big, and bright, and so colorful (even with the snow).  The car felt so fast, even going so slow.  It was exhilarating to leave, but a relief to be back.  Last night was the first time I have left Zoë for more than two hours. Wouldn't you know she didn't even miss me. She was with her Grammie, and slept nearly the whole time.

Finally I was asked about Zoë.  So here is a little update for the past 3 days since they have all been pretty much the same:
Zoë finished her second round of chemo on Thursday.  Friday, Saturday, and today she spent recovering, and being a typical baby.  She has not had one side effect at all from this round of chemo.  It has been over a day since she has had any pain killer, or nausea medication.  I am blown away by how well she is doing!  I keep expecting her to wake up and be so sick, and every morning she greets me with a smile.  She was all giggles and happy today which is extra wonderful because today is her 3 month birthday!  Zoë was greeted this morning to a poster made by the night time nurses wishing her a happy 3 months too.  *smiles*

Today the 24 hour urine collection ended, so now the urologists know how much each kidney is producing.  Tomorrow they will clamp the left kidney and collect 24 hours of pee from her catheter.  Then compare the volume from the left nephrostomy tube to the catheter to see if her left kidney is draining properly to her bladder.  Once her left kidney function is determined there are several options to resolve her left nephrostomy tube.  Her right tube will probably be replaced this week before Zoë's immunity drops.  The doctors are concerned with infection from the current tube (as they are only supposed to be in for about 2 weeks).  It is wonderful that they have stayed in this long with out any issue.

So there were many many more questions asked, which leads me to believe that there are even more questions you may have.  If you have known me at all, even for a little while, you will know that I am extremely open, and honnest.  I would love to answer any questions to the best of my ability.  Also, some questions you have maybe ones that I have not thought up, and I may want to ask the doctors.  So, please post, or email me questions and I will try to answer them to the best of my ability.  Please keep in mind that I am still refraining from doing much research at this time about the cancer itself, and those googling out there may know more than me at the moment.  But I would love to answer any questions you have regarding Zoë, or myself.

Giving back:
So because of your over generousness we had a ton of left over cupcakes, cake, sandwiches, and soda.  I brought the left overs to the hospital where they were gladly accepted by the nurses and doctors.  Some of the cupcakes went to 6 North, and 6 South (Oncology and Hematology), and the cake went to the emergency room.  So the hospital staff has been on a sugar high all day!  It was wonderful to share, and give back a little to the staff who have been taking such remarkable care of Zoë.

Tomorrow my mission is to file paperwork for my job to be authorized to accept donated time.  I will let you know as soon as it is approved.

I will end here tonight as it is nearly tomorrow, and Momma needs her beauty rest.

This post is brought to you tonight by some of my favorite authors, so here are a few more quotes to go out on.  (Some of you may remember some of these as I put them in the program for our wedding too.) *smiles*

Love and Hugs!!
  
“The Eskimo has fifty-names for snow because it is important to them; there ought to be as many for love.”   
~ Margaret Atwood

“Love: the sickest of Irony’s sick jokes. The place where logic and order go to die.”    
~ Christopher Moore

“Love is the ultimate outlaw. It just won't adhere to any rules. The most any of us can do is to sign on as its accomplice. Instead of vowing to honor and obey, maybe we should swear to aid and abet. That would mean that security is out of the question. The words "make" and "stay" become inappropriate. My love for you has no strings attached. I love you for free.”    ~Tom Robbins

The Good:
Zoë's tumor has shrunk by 20% according to an ultrasound done  today!  Most of this was from the first round of chemo, as the round she is going through at the moment has not had it's full effect yet.  Hopefully her tumor will shrink another 20% or more with this round.  In about two weeks she will have an MRI to get a full picture of how she is doing, and how round two has worked.

Zoë is also handling her chemo so well.  She has not had many ill effects yet.  Most of her discomforts are easily taken care of.  Today she did not sleep much, or eat well, but it was mostly from interruptions and not illness. 

I started a wee bit of Physical Therapy this morning, and wouldn't you know when seeing the PT this afternoon what I did was what she recommended.  Ah, natural instinct you are so cool.  So Zoë will have a Physical Therapist visit us when we are home, and right now they are working out the details for that.

The Bad:
So folks it looks like I was right to not get all of our hopes up for Zoë going home this weekend.  What a relief.  I know doesn't that sound so contradictory.  But really I am so panicked to think of having her home with the tubes in her kidneys.  These tubes can be a source of infection and with Zoë's immunity about to drop in 7-12 days from Monday it is imperative that she stays infection free.  So the plan is to in the next day or so figure out if the left tube can be removed by doing 2 tests (collect all of the pee over 24 hours from both kidneys to see what their functions are, then clamp off the left kidney to see if she can pee regularly at the same rate that was collected over 24 hours).  Hopefully the tumor will shrink more and the issue with her right kidney will be alleviated.  There are so many different outcomes for her kidneys, and what can be done...so rather than speculate I am just waiting and seeing.  But what I do know if that because of her age, and the risk of infection I don't think that she will be leaving the hospital until this is worked out. 

So with that said lets have some definitions.  
New Terminology:

Rather than continuing to call them "kidney tubes" lets go with the medical term.

Nephrostomy Tube- A nephrostomy tube is a drainage tube placed into the kidney to drain urine directly from the kidney. The word "nephrostomy" comes from two Latin root words for "kidney" (nephr) and "new opening" (stomy).

This is a term that you will here me use often in the near future.  When Zoë's immunity is zero she is considered neutropenic.

Neutropenia or Neutropenic - from Latin prefix neutro- (neither, for neutral staining) and Greek suffix -πενία (deficiency), is a granulocyte disorder characterized by an abnormally low number of neutrophils, the most important type of white blood cell. Neutrophils usually make up 50-70% of circulating white blood cells and serve as the primary defense against infections by destroying bacteria in the blood. Hence, patients with neutropenia are more susceptible to bacterial infections and, without prompt medical attention, the condition may become life-threatening (neutropenic sepsis).

I am so very glad that I took Latin.  How I loved it.  I wonder is there a Rosetta Stone for Latin?

And now how am I doing?  This is a question that I have been asked a lot lately.  Well I had a wonderful visit with
my Mother and Grandmother this week (yesterday) which recharged my need for hugs, kisses, and all around familiar faces.  They also brought with them some awesome gifts.  A teddy bear for me, from my brother Daniel!  Also a very big and special thank you to those wonderful people at NRI Community Services who are literally fueling our tank with the gift of gas.  With Zeppo making the 57 mile (one way) trip to the hospital several times a week our gas bill has increased exponentially, and we greatly appreciate the help.  Mrs. Cook I cannot thank you enough for the knitted booties, they are so cute.  Grandmere and Pap, thank you for the beautiful flowers.  I will be sure to get them from Mom as soon as we are home.  *smiles*

I also got hugs and kisses from my husband yesterday.  Zeppo has been amazing during this time.  I don't think that
I write enough about him.  But he is handling all of the house stuff, the cats (and Ben's stupid UTI), working, and coming to the hospital.  Zeppo supports my every need.  What ever I ask of him it is done with both speed and efficiency.  I truly could not survive here all this time without him supporting my stay in the manner to which he is.  Zeppo has always been amazing.  I knew from the moment I saw him in K-Mart all those years ago that he was not just any guy, but "the one" guy for me.  When you remark about how strong I am, well I am only this strong because I have Zeppo to lean on, and cry on, and whisper all of my fears to.  He is the one who reassures my every decision, supports my ways of coping, and holds me up when I literally cannot stand (and yes I mean literally
not figuratively).  Zeppo, I love you!

About the dinner this weekend... I asked the doctors if this would be OK for me to go since I don't want to catch a cold, or bring home germs.  The doctors all agree that because I am healthy there should be little risk. Just to wash hands, and have plenty of hand sanitizer on hand (hehehe...punny joke, I know it's bad...).  If you are sick we do request you will just keep a safe distance.  I can give grins, and thumbs up at you from across a few feet.  *smiles*

Which brings me to "The Ugly"....

Oh my goodness what to wear?  How I could use a pedicure....  Is there a salon in the hospital?  I bet if someone opened a salon in the hospital they would get more business than they would expect.  After being here for nearly a month it would feel so good to have a spa day.  Even a full size shower would work.

Just remember people I am post baby...with little access to time for working out...and I am hospital dwelling.  So be kind.  Hehehe. *wink*

Today's post is brought to you by homemade fudge (THANK YOU Mary Louise's daughter (sorry I did not catch which one made it).  Your fudge is yummy, and is sticking to my tummy...not helping the weight loss....ugg.  *smiles*

Love and Hugs!

Last night Zoë and I settled down in the big blue chair.  She rested on her pillow and nursed serenely, while receiving the first of three chemo drugs for her second round of treatment.

The nurse came in dressed in a surgical gown, mask, and special gloves.  She handled the syringe of chemo like it was a toxin.  The thing about it is, that it is a toxin.  So here I am sitting with my baby, watching the pump slowey bit by bit poison her.

Long before becoming pregnant I cleaned up my diet, I cut out alcohol and caffeine, I researched the best foods to eat, I started prenatal vitamins years before conceiving Zoë.  Then once born I maintained this diet, and began researching what foods to eat to help with breast feeding, and what vitamins to take to help get her what she most needed.  If she showed signs of allergies, or discomfort after a meal I would analyze what I ate that day and cut it out of my diet as well.  I would not say that I was obsessed by any means, but I was determined to give Zoë only the best of the best.

When it came to vaccines I worked with her doctor to space them out a wee bit.  So we could let her body handle
one at a time, rather than stacking 2 or 3 in one visit.  I am not anti-vaccine at all.  In fact I believe they are very important.  I have a Great-Aunt who was affected by polio.  If only the vaccine existed sooner she would not have the pain that she has today.  I also know that the body needs to learn how to fight off the virus given in the vaccine, and I just wanted to give Zoë's body a little extra time to learn and adapt.

So here I am, doing what can be described as one of the most natural, loving, and healthy things for my baby
(nursing her), and knowing all the time that tomorrow she will be sick with chemo.

The first round of drugs she received all at once the night that we were given her diagnosis.  I was still too shocked, and quite frankly once she was comfortable I curled into a ball and slept during her first dose.  I was experiencing sensory over load.  I did not want to be touched, or comforted, or spoken to.  I needed to self sooth, to cry myself to sleep, to gather up all of my strength to prepare for the battle.  So I did not see the chemo being given to Zoë, looking back I did the right thing, because I could not have handled it then.

I wish Frida Kahlo was still alive, because I want her to paint a portrait of Zoë and me.  Of a mother and her sick child.  The pain and the love of both of us.  Frida was a strong woman of both mind and spirit, but not body.  She like my Great-Aunt was affected by Polio, as well as a very bad trolley car accident.  Frida's was not a physically beautiful woman, and the accident left her so badly broken, but the art she created is surreal, and hauntingly
captivating.  Frida never was able to know the joy of motherhood, but I believe she could have captured the moment last night.  As a woman who desired to be a mother, as a person who had suffered great pain, and as an artist who would have seen the beauty in such a devastating moment.  If you have never looked at her work you should, it will make you think, and maybe learn a bit about the human spirit.

Zoë slept last night all night long.  I got another 8 hour stretch thanks to her.  This morning she woke and nursed, and became nauseous. Blondine returned from her long weekend and this morning during Zoë's nauseous melt down she stood besides me and prayed in both English and Creole. I don't know if her prayers worked, or if her voice was soothing, or if the Ativan Zoë was given kicked in...but regardless Zoë calmed right down. I really need to
hire Blondine to be Zoë's comfort companion.

After a whole morning of cuddling and nursing I placed Zoë on her special gel mattress, and made her comfortable and she is now sleeping away.  As I type this Zoë is receiving the next two drugs to this chemo cocktail.  They will be give to her one at a time over four hours today, tomorrow, and Thursday.  She is getting them only at a half dose this time around so the doctors can see how she handles them.  They will increase the doses in the future depending on what the tumor is doing, and what she needs. 

I plan on doing some house keeping (laundry...boo), and maybe get a nap in (yay!).  Also to continue to crochet...and relax while those toxins go to work and do their job.

Keep sending your love and prayers and positive energy especially this week.

This post is brought to you today by the paintings of Frida and her fiery spirit.

Love and Hugs!

If I were to really scrutinize this weekend I would not have all that much to criticize.  Zoë has been a model patient.  She is acting very much like herself only better (gave me 8 hours of sleep last night!)

I had family and friends visit, bringing care supplies, Zoë some comfort and gifts, and reports of so many out there thinking, and praying, and sending their love and positive energy threw the cosmos to our little one.

I have decided that I don't like the nick name "Angel" to describe Zoë.  I would prefer her to remain full of vigor and life, and let other's be an angel for her.  Zoë's mission right now is to keep her feet planted firmly on earth (or at least lay firmly on the ground, hehehe).  I don't want Zoë to be an angel, I want her right here fighting like the devil.  

I don't know how many, if any of you know this but I was pregnant once before conceiving Zoë, and had the misfortune of suffering a miscarriage.  This experience has lead me to many revelations.  I will not get into the deep details of all of them, but I will say that I do feel like Zoë has an older brother or sister looking out for her.  I will never know if it was a little boy or girl, or what they would have looked like, or what their personality would have been.  I have friends who have babies the age that my little one would be.  I look at them in wonder, and wonder what could have been.  I also look at Zoë and know that she would never have been if I did not loose my first baby.  Since Zoë has been hospitalized I think even more about this little being, and I implore him or her to protect and look out for my little Zoë.  I also send my love and my heart out to him or her, because even if we did not get the chance to meet, it does not mean that I did not love him or her with all my heart.

Today is a holiday so the hospital is quite.

I signed the paperwork for Zoë's treatment plan this morning.  Since she is doing so well they will do her next round of Chemo either today or tomorrow.  The orders are set, and they are just waiting on one final conference with all the doctors.  Once they are satisfied with all of her statistics they will administer the chemo.

I am bracing myself.  I am taking today to relax, store up energy, and meditate.  As I crochet  by her side I envision a swirling vortex of positive energy and love, and light hovering over Zoë.  Like a twister touching down on her abdomen, and tunneling into the tumor.  As I meditate, and place my hands over her I picture her cancer cells exploding in a white hot light like fireworks, and love and energy coursing through her veins. 


I am a big believer that names give you a strength and a power.  For years I have looked up names and I love to learn their origins.  If I hear a new name I have to look it up, I also remember most name meanings, and am fascinated to see how people take on the character of their names. 

So when it came to naming our baby I felt this was a very important task.  I was on name websites, blogs, had books, created list after list after list, crossed off names, tried different variations of the same name, searched by meaning, searched by letter...ok you get it.  I was obsessed.  I also once we picked "the name" was very hesitant to use it, or write it prior to our little one being born.  I wanted to look at her, and see if she fit the name we choose.  The moment I held Zoë for the first time I knew she was a Zoë Faye.

Why am I writing about her name?  What makes her name so special is the meaning.  Zoë means "life" it is a direct transliteration of the ancient Greek word 'zoe'.  Her middle name Faye has two meanings the English "fairy" or from of the old French Foy, meaning "faith" (from the Latin 'fides').  I don't believe Zeppo and I could have named her more appropriately.  We have given her a strong name, a whimsical name, one with deep ancient meanings, and a name to give her strength.

So as my little one embarks on her next round of chemo I will whisper to her, "Zoë, Zoë, Zoë, Mommy loves you.", and she will live, live, live strong, stay safe, and get healthy.

Today on Martin Luther King, Jr. Day I have a dream....and you all know what it is. 


 Love and Hugs!