More great news! the urology surgeon was able to save the ureter that has been in question...They anticipated it being lost but he was able to reconnect the right kidney to the bladder via the right ureter. There is a stint in the ureter because it has been a long time since she has used it. They will monitor it for the next month to ensure that it continues to work. For now, they have clamped off her right nephrostomy tube. The battle today has been a major victory in the war against Zoë's cancer. When she recovers from the surgery, the surgeons will discharge her, but the oncologists will retain her in oncology for another week to start her next round of chemo. They will use the ICE treatment at full dose, which is very strong and aggressive. What makes these chemo drugs more potent than the other three chemo drugs is that they pass through the blood/brain barrier and treat her central nervous system, too. There are many more battles to be fought and won, but tonight, Laura and I celebrate with turkey chilli! Yum!!
The arteries on the left side are all freed up and now they will begin getting that right side free, too!!
what is so freaking frustatring is spending a ton of time writing a long
update and the page automatically refreshing. Everything was lost.
Know that other than me being impatient and cranky, the surgery is going
well. Basically, the surgeons are isolating the tumor away from the major
blood supply in her abdomen. Its taking a long time because the tumor is
the size of a clementine, and its consistency is that of chopped fatty meat, or
a gelatenous mass that is difficult to grasp on to or scoop out. There is
a high risk of leaving some cancer behind because the cancer cells are so small,
smaller than dust.
The first part of the surgery is getting as much of it out as possible. The
second part will be reconstructing every thing as best as possible. The
left kidney and ureter seem to be okay, the right kidney seems okay, too, but
the right ureter is virtually lost with the tumor. Hopefully there will be
enough of it to attach to the left kidney or left ureter. If it is not
long enough to reach the left side of her body, they will probably just attach
it to the skin and make it so that the kidney will just drain into a bag or into
her diaper through a tube.
At least they are still operating on her. They can take all day and
night. I'm relatively comfortable where I am now. My hope is that
today is the longest day of my life.
Laura and I are trying to keep updates on facebook and on Zoë's website: www.teamzoecancersucks.com
But I figured that since I have a lot of free time today, I would email
everyone with a quick update. Today is Zoë's big day: surgery. I arrived at
the hospital at 5am and we had Zoë down in Pre-op by 6ish. I feel so bad for
her, not because she has cancer, per se, but that she was so hungry that she
started chewing on her shirt.
We met with the team of doctors and then it was quickly off to OR for baby
girl. Its been a waiting game from then on out.
The other day, Laura and I had a sobering conversation with the surgeons.
I personally felt that Laura and I would heroicly go in the office with the
surgeons and give them permission to be as aggressive as they needed to be to
get the cancer out of her. And then we hit a solid wall. It hurt a lot. I
expressed my concerns with the chief of surgeons at Children's (who incidently
is personally doing the surgery. He is world renowned and his credentials are
about as long as a football field.) He answered my question, and added what
really concerned him. Apparantly the tumor is so large that it is enveloping the
aorta, the inferior vena cava, and all the rest of the major blood supply to the
lower limbs. Why hadn't I thought of that before? Small infant, huge
Another concern that he had was that when we brought her in to the
hospital, she had a lot of fluid free floating in her abdomen. He said it could
be that part of the tumor ruptured and that is what caused the fluid. If that
happened, then the tumor can reseed no matter what they do and will probably
return at another date. However, it could have also been that because the tumor
has also enveloped the right ureter, the plumbing between the kidney and the
bladder, and was not allowing her kidney to drain properly...that it was really
draining directly into the tumor and had no where else to go but inside her
abdominal cavity. The last thing that concerned him was that because the CT
scans and the MRI's could not get the microscopic pictures of the space between
the tumor and the abdominal lining, they did not know if the tumor has already
grown into that the abdominal wall. That is probably the worst case scenario.
When they start the surgery, they are going to make a small incision and take a
look to see what the extent of the damage has been. If it has grown too much,
and feel that they cannot help her, they will stitch her up without proceeding.
Well, as I am writing this email, I've been interupted several times. Once
to see if I would like to buy a cold sandwich off a cart that looks like it was
at some point used to move dirty trays to the kitchen and once by the nurse
liason. I am so happy to include in this email that the nurse liason told me
that after taking a look at the tumor and the shape of things inside a little
tiny girl, that they are indeed going to proceed with the surgery. I don't know
what that means at the end of the day, but for now, it is great news.
Thank you for taking the time to read this long email. Please, if you have
a chance and want to follow our progress today, go to our website and send your
love and prayers through facebook. Seems cliche, but it gives us hope when we
check our facebook pages and see so many people changing their profile pictures
to one of Zoë Young.
In the darkness, I found two sparkling gems this week.
The first was inside Shaws Market in Webster. I walked in the front door wearing my Red Sox hat. This old man with a limp walked past me. He asked, “you’re wearing the hat, what do you think of the team?” I was in a foul mood and wanted to make some nasty comments when I finally responded: They owe us a big favor. “You bet your ass, they do” He said and laughed. That cheered me up knowing that I am not the only angry New England Sports fan.
The second gem was at my lowest point, after meeting with the surgeons the other day. It was a very difficult conversation that completely knocked the wind out of me. The nurse practitioner and surgeon allowed Laura and me to have some time alone in the room before they moved us to another office where we would meet with the second surgeon. I sat in a chair beside Laura with Zoë in my arms, thinking about the conversation we just had and the worst case scenario that could come from the procedure. My emotions were overwhelming. As hard as I fought to stuff them inside, the harder they fought to break free. Finally I began to sob. It was all too much to handle. Zoë is too young and innocent to be dealing with cancer. As I cried, looking down at Zoë’s precious face, hoping that I get the opportunity to watch her grow up and graduate college or see her get married and start her own family, I cried even more.
That’s when it happened. She laughed. I am not talking about a grunt or some other random noise she makes when she smiles, but a full on string of laughter. Her laughter made me cry, because she didn’t understand how sad I was feeling. And when I cried more, not holding anything back, she laughed even more. She had never laughed like that before. You can guess that we continued this pattern for a while, where she would have an outburst of laughter and I’d have an outburst of crying. It started as a vicious cycle that stung me like acid on an open wound. But it was so ridiculous that it had Laura and I laughing.
I might forget the old man, but I never forget Zoë’s laughter.
Even faced with death, laughter is the best medicine.
When I used to teach at the Denver School of Massage Therapy, I used to search the internet for quotations and stories to inspire the students. I found one that I have thought a lot about even before Zoë was born. I imagined myself standing in the kitchen when Zoë would arrive home from school one day. The stove top had several pots and pans and all were set up to go.
You see, I want someday to show her the exercise from this story. I want one day very much to teach her this important lesson. Are you an egg, a carrot, or a coffee bean?
In my mind, Zoë walks through the door and, of course, is wondering what I am up to. I'm standing there in front of the stove wearing an apron that says something dorky, like best dad ever, or kiss the cook. But if you really know me, you already know I will burn the toast if you don't pay attention to it for me.
Anyway, I show her that I have three pots of cool water and each contains an egg, a carrot, and a coffee bean. As she looks in each pot and confirms that each are in their own pot, I turn on all three burners. After a while of talking to her about her day and making dorky jokes that only I could manage to create, the water starts to boil. We continue to talk and the conversation becomes serious. I tell her that life is not always going to be fair, that life is not always going to be easy. The difference between a good day and a bad day is our perspective. We are only as happy as we believe.
As the water continues to boil, I turn off the burner plates and ask her to examine the contents of each pot. As she looks in, I ask her again, are you an egg, a carrot, or a coffee bean?
The dialogue we had went from dorky jokes to a more serious tone. As I probe her mind, stimulate her brain to think about this exercise, I explain that when life gets tough, there are some people who get find themselves in "hot water" they react in various ways, like the egg who starts off soft and becomes hardened, or the carrot who is hard and becomes soft, or the coffee bean who changes the environment by changing the state of the water. The tasteless water becomes an aromatic beverage that appeals to billions of people around the world.
I am definitely an optimist. The glass isn't half empty and it is not 't half full either. The glass is twice as large as it needs to be.
Right now, life is tough. Laura and I are not only battling with cancer and but with our emotions every day. I believe that because of who we are, when Zoë grows older, I won't actually need to have this imagined conversation with her, because Laura and I are both coffee beans. Zoë will learn the lesson because that is how my family just is.
Its been a long day for Zoë today. We stopped feeding her formula/breast milk at 1am, stopped her milk feeds completely by 2am, and then woke her up in time to depart the house at 5am for a CT scan at CHB for 7am. Spent the next hour after arriving at the hospital walking the halls of radiology trying to console a hungry baby who if she can't use her stomach will use her lungs. Finally cleared up the confusion about her CT scan/MRI and got her into her CT scan by 830. Picked her up from recovery by 1030 am where they also replaced her nephrostomy bag dressings and brought her over to the Jimmy Fund Clinic. There she met with her PCP and a couple of nurses. they drew some blood, changed her broviac cap and changed its dressing, too. I took a brief nap and when I woke up, they had already given her her chemo for the day. It was pushed through her broviac line and was not through an IV drip as some of her chemo drugs have been. after this, and more that I am missing in this update, we finally made it home more than 12 hours later. I heated up left overs from last night, feed my wife, who feed my daughter, and then I gave Zoë Ativan. and now Laura is trying to set up her 24 hour feeds. And with this constant stream of thought and no spell check, I am getting off the computer to help them both out. I hope you don't feel as tired as I am by reading this block of text. Maybe I'll return later, break it up into a few paragraphs, spell check and delete any repeat repeat words.
It looks like Zoë is coming home tomorrow! She is such a brave little warrior. Despite the nausea and vomiting that she has been experiencing these last few days, she is in better spirits. When Laura was showering today, Zoë napped. Its is always nice to have some quiet time with her, especially when she is fast alseep. She needs the rest, she needs to heal and our bodies repair themselves when we sleep.
I remember when I was traveling through Mexico, back in my travel years, I met a guy in the hostel where I was staying. He never slept. Never. And it showed. He just did not look healthy. He needed to use chemical stimulents to keep himself awake. He told me life is too short, he didn't want to miss anything. I prefer to get a good nights rest so that I am awake when my eyelids are open, so I can enjoy the most important things in life. Like the time I spend with my daughter.
I am excited that baby girl is coming home. Excited to be a dad, who reads to his daughter, and holds her in his arms with two cats fighting over the real estate on his lap. It will be easier for me to help Laura, too, as I walk away from her when Zoë is cranky. If I want to ensure that Laura gets a good nap in, I can tell her about my dreams and ambitions, or I can just take Zoë for one of her "midnight" rides up and down 395.
Did you know that Laura and I spent months of reading books on baby names and visiting websites? We even spent a whole afternoon or two at Barnes and Noble sitting in their café reading their books and drinking their coffee. We’ll, I was drinking their coffee. My guess is that Laura hasn’t had coffee since she first found out that she was pregnant in January last year.
Laura and I spent so much time researching names and arguing over the ones we liked and why we wouldn’t settle with this name or that one. We each had our lists, and were not shy about crossing off names from each other’s lists.
I can’t remember when we first agreed on Zoë’s name, but we had help. Laura’s friend was visiting from Philadelphia and commented on Laura’s list. She said, “Zeppo and Zoë. I’m surprised you aren’t fighting for this name.” When she put it that way, I was immediately persuaded. I knew Zoë’s first name could not be anything else.
Then we had the challenge of finding the right middle name. That was pretty simple for us to agree on. Laura loves the name Faye and I liked how her name flowed. Zoë Faye Young had a name!
It is also convenient that Zoë is named after me when after all she is a spitting image of her old man. I’ve looked at a few pictures of her that Laura took at home and my first question was how did Laura get a baby picture of me.
Zeppo Young finds joy in the simple things in life, such as digging around in his garden, and fermenting vegetables.
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.