Thank You

I just wanted to say thank you to everyone for all of your love and support.

Henry

Surgery went well.

At 4:45pm the Dr's came to tell us how the surgery went.

Everything went smooth, and the only thing that did not go as planned was that Zoe's bones are a little small for the screws, so they used wire to give it a better hold.

Dr. Mirza said that he talked with Dr. Sekhar about waiting another week before the 3rd surgery and it seemed that he was ok with that. Dr. Mirza would like to send us to Seattle Children's Hospital to start the rehabilitation process soon, then have us come back to Harborview for the 3rd surgery, then back to Children's for more rehabilitation.

Henry

Phase 2

Zoe went to surgery at 745 this morning. The docs gave her an anti-anxiety at 7am to keep her calm. It helped during the long stretcher ride to the pre-op area, and for the inevitable wait before they sedate her. My mind is racing in a million different directions as I sit here in the packed surgery waiting area. Nervous family members of other patients all around me. It's not exactly a stable environment, especially when you're trying to get a grip on your own anxiety. I try not to look at other people in the eye, I don't want to feed off of their fear, and vice versa. Honestly, this surgery isn't any less scary to me than the first surgery. Doctors have a wonderful way of being brutally honest with you about all the risks involved, and giving you their opinion of what they feel is in store for Zoe in her future...whether we want to hear it or not. Of course I don't want to hear it, but I do need to hear it. I'm still working on not letting it tear down the wall of hope and trust that I have so precariously built around myself. I break down, then I get back up and keep moving forward with my rickety thin wall back in place, hoping that day by day it will get less rickety until it can take the blows without crumbling.

It takes more effort right now to stay positive than it would take to just let my fears take over. I know this. I'm choosing to be positive and hopeful because I know that is the only thing I have control over at this point, and I know that it is the only thing that will get us through this. Chordoma is bigger than Zoe, and everyone else in the world that has it. I feel a responsibility to her, to all that have it, and who will be diagnosed with it to keep myself together. To stay strong, to educate myself, and to fight this disease. I don't really know what that looks like or will look like in the future, but it will be a big part of my future. I sit and find myself in a space where I ask myself why my daughter? Why her? The answer is that everything happens for a reason. It's what we do with it. It's my responsibility to do everything I can to get her through this and to do something positive with it. That is doing right by Zoe. I've always questioned whether or not I'm the best mother I can be, and now I am proving to myself beyond a shadow of a doubt that I am. My promise to Zoe is that I will stand by her side through all of this, fight for her, advocate for her, love her, and do whatever I can for others like her. If this is my purpose on this earth than I gladly accept. I'm resolved. Heartbroken, but resolved.

On a lighter note...last night was chaotic, but wonderful in it's own simple way. In between the late night ct scan and blood draw, Henry and I got to have a few hours of silly time with Zoe that felt like home. Fart jokes, daddy tickling mommy, mommy pretending to be grumpy, mommy tickling Zoe, Zoe giggling her cute little giggle in between bites of ramen, reading Harry Potter to her while she half snoozes, and cuddle time. It's not easy snuggling up to the halo, but I do my best to make it work. It just felt good, and those little moments mean so much.

The soundtrack to my day always begins with Van Morrison,
A Brand New Day-
When all the dark clouds roll away
And the sun begins to shine
I see my freedom from across the way
And it comes in right in on time
Well it shines so bright and it gives so much light
And it comes from the sky above
Make me feel so free
Make me feel like me
And it light my life with love
And it seems like
And it feels like
And it seems like
Yes it feels like
A brand new day
A brand new day

Helps to keep me in the present...at least for the first 5 minutes of my day....

Colleen

Surgery number 2

Today we have our second surgery. Today's procedure is the C Spine Fusion. While i am saddened by the fact that she will have such limitations in flexibility and ability, I am grateful that she is getting the best possible care. She has the best surgeons, with the best equipment, and a well thought out plan.

Dr. Mirza came and talked to us this morning, and we were able to talk with him for almost 30 minutes. We spoke of the plan for todays surgery and the plan for rehabilitation.

They are going to fuse from the Cranium to the C4 vertebrae, using titanium plates and bone grafts. during the first surgery they had to remove some of the remaining bone to get to the tumor, so they are going to have to use a bone graft to replace that. they are going to then put in the Titanium plates screwed into her skull, going down the spine tied to each vertebrae, to the C4 vertebrae. this will support the head while the body regrows bone using the graft as a "scaffolding" fusing the bones together. During the 3rd surgery they will have to go in and remove more bone, so the plan is to also do another bone graft on the other side at that time. Due to this, Dr. Mirza wants to wait a little longer before doing the 3rd surgery, Dr Sekhar wants to do the 3rd surgery on Monday June 2nd.

Zoe's last question this morning was if she could eat after her surgery, so we made sure to ask Dr. Mirza about that. He does not expect her to have to be NPO (no food or drink by mouth)for more than a day. So that is good news. They are doing the surgery with her face down so there is a possibility of swelling (face down for 5 hours would cause swelling in anyone). She will still have to ease back into eating, but hopefully that won't take long.

We have had some issues with pain management this week, so we were worried about the pain getting out of control. Our original system was using Tylenol and Oxycodone, this did not work well, but it was hard to judge because Zoe doesn't like the High feeling. It was suggested that we start her on Methadone, I always thought that this was only used for Heroine maintenance. Methadone is used to maintain the baseline pain, it worked. We are then able to address the acute pain with Oxycodone. The theory is that with the Methadone on board, pain management should be easier. As far as long term pain, we should not really expect any chronic pain, outside of the probability of early onset of arthritis in her neck but that shouldn't be for 30 years or so.

All in all, this surgery is a good thing. We have some distinct steps that we need to take to get her better and this is the second major step. After the next surgery, we have some healing to do, and then we are looking to Proton Beam Radiation treatments.

While it has been infuriating trying to wade through all of the changes in plans, and speculation, I take comfort in the knowledge that these Dr's are some of the best at what they do. We have been at the mercy of these very busy men trying to clear their schedules to accommodate us, and save my little girls life, and for that I am eternally grateful.

Henry

Here are some pictures of Zoe with her Halo on.

I have put the pictures behind the cut for sensitivity purposes, She has her Halo on but I only put happy pictures up.

Mom and Zoe going for a walk to the cafeteria for cookies and milk. A little bribery to get her out of bed isn't a bad thing....




Pizza...one of the many foods we had to have after the feeding tube came out!

Surgery confirmed

We have just gotten confirmation that the C Spine is scheduled and for sure first thing Wednesday morning!!!!

Henry

This is the updated plan

We are going to have our C spine fusion surgery on Wednesday the 28th. Dr. Sekhar wants to have the last surgery 7 to 10 days after that. After some recovery, we will be able to go back to Portland for our rehabilitation, we need to decide which Hospital we want to go to. We started this adventure at Legacy Emanuel, but we have heard good things about Dornbeckers.

We still don't know about when the radiation process will start, or how we need to get that started. Right now we are just focusing on getting through these surgeries.


Henry

Our Team

Our surgeons

Our Nuerosurgeon

Dr. Sekhar

This is the team doing the C Spine Fusion
Dr. Avellino

Dr. Mirza

Henry

Next Surgery Scheduled

Preparation has begun for Zoe's spinal fusion, which is scheduled for next Wednesday. By preparation, I mean, back to back CT scans for the last three days, and an MRI today to top it off. There may even be more in the works. I appreciate how much caution they use in preparing, but at the same time poor Zoe gets so anxious about these procedures. She puts up with so much with very little complaint. Yesterday she finally said she was tired of people coming in her room every time she was trying to fall asleep, so the nurse put a sign on Zoe's door telling all to see her first before entering. Zoe had about a three hour reprieve. It was nice while it lasted.

The word today is that she can begin having food orally rather than through her feeding tube. She has been asking for lasagna since the day after surgery. Aunt Sarah made us lasagna to take on the road before we left Portland and it was a big hit with Zoe. You're the best Sar! I think we'll start with something a little more simple...like water and jell-o though...we don't want anymore roll-ups.

In other news, nurse Karen (who rocks), and I got Zoe on the potty chair yesterday, and even had her standing with support for a moment. She is extremely weak, and top heavy with the halo, but it was definitely good for her to be upright. She did a lot of coughing and burping so I think she got some trapped secretions and air up. While getting her back in bed we had a little scare though. We heard a loud pop from Zoe's head and neck area. Karen assessed her, neuro came up and checked her, and the orthotics people came up and checked her halo as well. No change seems to have occured, but the CT for today is to make sure of that. It was no big deal to Zoe, but my heart got a work out from it. Everyone here at Harbor View is on top of everything when it comes to Zoe, so I feel really safe.

Zoe's pain seems to have increased at her wound sites in the last couple of days, which we are being told is normal. So, we are increasing her pain meds to help out with that. It's doing a number on Zoe though. Her spirits have been a little low. She doesn't know what to do with herself, and one can only watch so many movies. It's tough...I want to see her smile, but she's in charge of her feelings, not me. I read to her, try to engage her in different simple activities, and try to be silly with her. It works for a moment, or a little while if I'm lucky. I feel myself getting anxious because I don't know what to do. What used to work doesn't work anymore. I can't begin to even pretend to understand what she's going through. How can I know what to say to her? She has asked me to say the "God words" (prayers) to her, because she like to hear them. She cries when I do, and then I cry. I feel like my heart is breaking sometimes, but then I remind myself that we will get through this. There is no acceptable alternative.

I'm am so immensely grateful for so many things right now, the doctors, nurses, my step-mother, Henry, Zoe's strength, my own strength that I didn't know I had, my family, my friends, strangers, a prayer from a man I met in the hospital cafeteria, the sunshine, this blog, hot showers, people to watch when I look out the window, stupid trashy magazines to read that take my mind off this, the prayers that I say over and over in my head, and much more.

Thanks for letting me unload, because this is what this is for me...a place to unload.

Colleen

Not much news

So it has been a while since we have posted, and I just wanted to let everyone know that not much has happened.

Zoe has been steadily improving each day, she is more and more alert each hour. Friday night she didn't get much sleep, but last night she seemed to sleep just fine. Her stomach and her hunger have been issues. She has not had solid foods since Monday the 12th, so her tummy is getting sensitive to medicines and other things. Yesterday she had roll ups (this is what we call vomiting), when the nurse gave her a laxative in her feeding tube. Today, she had roll ups when they gave her Tylenol. Hopefully when she transitions into solid foods soon.

Henry

Sleeping Peacefully

Zoe is sleeping peacefully (which she is doing a lot of understandably), so I'm going to take a moment to write. When I arrived at the hospital this morning (dad had the night shift), Zoe popped her eyes open as soon as she heard my voice and gave me a great big smile! I've been on a high ever since! She's looking even better today than she did yesterday. Very lethargic and pale from blood loss, but tuned in when awake. The nurse had her up and sitting in a chair next to her bed for 30 minutes this morning. She didn't like being moved, but once she was settled she did great. I took a picture of her while she was sitting, and asked her if she would like to see what she looks like in her halo. She said yes, and when she saw herself she said "I look like an astronaut." I thought that was wonderful! Kristina and I both latched onto that and we talked about how fun it would be to be a real astronaut exploring the stars. She was smiling, and I was relieved that her first view of it went so well. Kids are so tolerant...it's us adults that freak out about the little things that we like to make bigger than they really are.


Her dressing was removed from her wound today as well. The wound is very long, but the stitches are small, and it looks exactly as it should. I can tell that Zoe was treated with the greatest care during her surgery which is very reassuring to me. There is even a mystery person that beautifully braided her hair away from the incision site to minimize how much needed to be shaved. I speculate that it was one of the young male anesthesiologists.

There has been another change in plans. Dr. Sekhar now wants to have Dr. Avellino perform only part of the C spine surgery, and then the rest later in conjunction with the surgery to remove the rest of the tumor. Dr. Sekhar needs to have access to part of the area that Dr. Avellino will be working in, and this will allow him to perform the final surgery earlier, as well as cut down on her recovery time. There may be more to it than this, but Dr. Sekhar is a man of few words. I trust him, and know that he has Zoe's best interests at heart. When I know more I'll post it. A wonderful day so far.

Colleen

A Brand New Day. (Sorry if I ramble)

The Brand New Day started at about 11pm on Tuesday. After the surgery, Zoe went straight to get a CT scan and another MRI. We finally got to see her at about 11pm. The plan was to keep her under sedation until Wednesday, but Zoe had other plans.

She decided that she was going to show us that she was going to recover faster and better than anyone expected. We had been told all along, that one concern was that the nerve that controls the tongue is surrounded by the tumor, so in the removal of the tumor that nerve could be damaged. So the first thing that Zoe does when she wakes up (did I mention that she woke up 12 hours early), with a breathing tube in, she wiggles her tongue around the tube to lick her lips ( and succeeds). She had, by report, had a good night.

In the morning, she started getting ready to get her tube out, but first they needed to get a feeding tube in. Unfortunately the feeding tube would not go in. The Dr.'s wanted to use a speial technique that included an X-ray that watches the tube go down, so that they could guide it or see what it was catching on.

So, from the moment Zoe woke up she was able to do everything that they asked her to do, she could squeeze and move everything that they asked her to. When they turned down the breathing machine, she just breathed on her own, no problem, she had a great gag reflex, and could cough well, as well. That took are of their list of benchmarks for taking out the breathing tube, so they took it out, and she did great.

The first thing that she said to Mom, was "can I eat now". The Nurses and Doctors keep talking about how great she is doing, with statements like "wow" and "she is doing better than we expected", so it was great to hear her being ahead of the curve again.

She had to get a Halo brace put on to stabilize her spine until the C spine surgery, and it kind of scared me to think about seeing her in that, but after actually seeing her it is not so bad. She of course had to be great with the adjustments.

We seem to be getting assigned teh best of the best, from the doctors involved to all of the nurses. So far she has had a single assigned nurse, each shift, which her nurse seems to be the ones that all of the other nurses go to for advice and help. Her day nurse was the one that finally was able to get her feeding tube in when all else had failed, no need for the X-ray technique.

During her surgery Dr. Sekhar had to open the pharynx, and stitch it back up so she will not be able to eat real food for at least a week. We also found out that we are going to have the C Spine Surgery on Monday or Tuesday. We are going to have the surgery here at Harborview, instead of at the Childrens Hospital. Which other than the expense of a hotel, we have been having good luck here so, why not stay with it. He has also decided that he is going to do a third surgery, to remove the rest of the tumor. He may want to transfer us to Childrens for some of the recovery, between the C Spine and the last surgery.

Dr. Sekhar is also recommending the Proton Beam Radiation Therapy, after her surgeries. So we are going to start looking towards making that happen.

Tonight I am taking a shift at the bed side, so Colleen can get a nights sleep, and I was able to get her to smile a real smile.
We are learning so much from this amazing little girl, todays lesson was to have faith in Zoe.

Thank you to all of the love and support all of you have given us, I could never express how much it has all helped.

Henry

Great News!

Dr. Sekhar came out of surgery at 6pm and told us that he was able to get 70%-80% of Zoe's tumor out! That was more than he thought he would be able to get going into this. We knew that he would be aggressive, but we didn't dream that he would get this much! We are ecstatic! He feels that she may not even need the third surgery. Just minutes before we got this news, Zoe's pediatrician in Portland called to tell me that all the oncologists at Emanuel met today to specifically discuss Zoe's case.

She has become a very popular little girl in the NW medical community. I figure there's no such thing as bad publicity, and it's very positive that so many doctors are putting their heads together to try to help her. They met to discuss radiation options for what's left of her tumor. The type of radiation that they feel would work for her is the proton therapy radiation. Henry and I read about this online, and had already brought it up to Dr. Sekhar, so it's great news to us that this is now coming up again. This particular kind of radiation is very successful at attacking tumors that are located in high risk parts of the body like Zoe's. It is able to specifically target higher doses of radiation at tumors without radiating healthy surrounding tissue. It would be some time before radiation is an option, but I'm so happy that it's already being discussed. We haven't seen her yet...right now the doctors are putting her into a halo device to support her neck and spine. With the damage done to her spine it was actually the tumor supporting her neck and head. Hopefully the halo will be able to come off during her next surgery when they do the spinal fusion. That should be in about a week. She will have another MRI tonight to show Dr. Sekhar exactly how much he got out, and then hopefully we can see her. We've been told that she will remain tubed and sedated for tonight, and possibly able to wake up tomorrow. I feel like I'm in so much shock right now that I can't really express what I'm feeling. I'm nervous and excited to see her. I know it will be hard to see all the equipment attached to her, but I just can't wait to tell her how proud I am of her! I promised to read her some of her favorite Junie B. Jones books tonight, and that is what I'll do, while she sleeps. Maybe she will hear me. I just want her to know that I'm here. Henry can barely contain his excitement...jumping up and down happy.


Want to wake and know where I'm going.
Say I'm ready. Say I'm ready.
Want to go where the rivers are overflowing.
I'll be ready. I'll be ready.
I'm ready to let the rivers wash over me.
I'm ready to let the rivers wash over me.
I'm ready. I'm ready.
-Tracy Chapman

I'm ready for what's next God, thank You for this day.

-Colleen

Zoe and Mom waiting for surgery

Surgery Day

Zoe went into surgery at 7am this morning. She was so strong and brave....it was amazing to me. I have never been so proud of my daughter as I am in this moment.

Going into this, I was so fearful that her body wouldn't be strong enough to go through these extensive surgeries. I had begun to see her as fragile from the constant illness. I just wanted to protect her. Whatever I could do to prevent her from getting sick in any way and I was all over it. Hand sanitizer, putting her hood up with every breeze, washing hands like crazy, and anything else I could think of on a daily basis. When we got the diagnosis of cancer, my first thought was, how is her little body going to fight this? I really felt hopeless. I prayed and prayed about it, and the answer I got was...believe in her. Just trust and believe in her. It's not just about the strength of the body, but also the strength of her spirit. Her spirit is so strong. I've seen her willing and able to calm down in the most chaotic of hospital situations, I've seen her fight like a lion, screaming her heart out, and I've seen her laugh with her sister about how stupid it is to "bumps" (that is what we call the cancer in her neck), and surgery. We all do what we have to do in this life...we're not always left with a choice. As adults we understand that illness (even serious illness) is part of life. Everyone dies someday. Birth and death and birth and death...that is what life is. It feels like a loss of innocence that Zoe must learn this so young. I want to mourn this, but something inside tells me that it may become something to celebrate one day. I truly believe that she will survive this. I no longer have to make a conscious choice to believe in her, it's just there. It's there, and it's beautiful, and it's freed me to be everything I need to be for her. Everything happens for a reason, and as hard as this is, there is a reason for it.

Thank-you to everyone that has visited our blog and that cares for Zoe. We are completely humbled by all the support from our friends, family, and people that we have never even met! It fills me up when I'm feeling empty to know that you are all out there.

Much gratitude to everyone who has donated...I don't know what to say...we're just so grateful to have your help when we need it most.

-Colleen

Precious Light

Here is something beautiful that I want to share. My step-mother/friend/huge source of strength's uncle Satyadharma wrote this in a email to her and she forwarded it to me. It touched me, and I'm humbled by the love that so many people have for Zoe. For life. As many of you know Zoe means life, but not many know that her middle name, Seryn, carries the double meaning of serenity and serendipity. Our dream for our daughter has always been a peaceful and serendipitous life.


So this is our life, now. With Zoe, with all of her Being. With the
Precious Light that is her... that inhabits her and eminates from her
eyes and her smile and her soft hair. Zoe is taking the Challenge, at
age 5. What courage. What grace of innocence. She has become a small
person on the big mountain of Life that is showing her all of the
Reality. In ways only she can be able to get it, just now. For
Zoe-understanding.

Mostly, it doesn't jive with the world and the bigger people around
her... but that's okay, because her love and the love given her is a
fine interface. But inside, Zoe is learning from Light. From God. And
this Light is letting her live out all that she has ever been, in
eternity, and all that she is to be and become... forever, so she can be
the flower she is meant to be -- for HERSELF.

It is amazing. That such a child could be ready for such a challenge.
Ready on a deeper, unseen level. A place of Mystery... that compels all
of Man. So much so humans have created hundreds of religions just to
honor, or at least, acknowledge it. This Mystery... our Light, in each
of us, takes us only where and as far as we are able to. At our own
pace. Zoe, in fact, is way ahead of many of us.

Respecting and honoring her Life's way: and healing and helping her in
her body/mind's ways -- of pain, or fear... these are the sharings and
carings given to us -- the people around her who she is teaching.

Love is it. The rest, the technology of science is available. And prayer
-- the offering of Self to HigherSelf in heart and let-go... we have all
that is necessary. Whatever is needed will be revealed.

There is no death of Light. There is a great doctor of Neurosurgery,
great friends and spirts abound, and the deep love of mother and child,
grandmother and grandchild... and on surround and feed Zoe. Even I have
sent a couple of spare angels to sit on her shoulder... if there's room!

Surgery is scheduled

I've begun to refer everyone to this blog, so I suppose it's time for me to write. It's not easy to feel these feelings. I want to avoid it, as everyone wants to avoid pain. That's human nature, but I know that I have a responsibility to Zoe to share what I can. Today, I received the official diagnosis from the pathologist in New York that is an expert in Chordoma that Zoe has Chondroid Chordoma.

I haven't yet researched it, but I do know that it is a particularly slow growing form of Chordoma. This may prove to be positive in the future, but only time will tell.
This last Monday we met with Dr. Sekhar in Seattle to find out what he can do for Zoe. We have heard wonderful things about him, and he is a leader in the kind of surgery that she needs which is skull base surgery. Her first surgery will be on May 13th at Harbor View Medical Center in Seattle, and we expect it to be quite long. As long as 12 hours. Don't ask me how a surgeon can perform surgery for twelve hours...do they take a break for lunch...I have no idea. Anyway, it will be on the right side of her skull and neck where the largest part of the mass is. His goal is to remove as much as possible during this surgery. As soon as three days later he, and a spinal surgeon, will perform a second surgery to fuse her vertebra that have been destroyed by the cancer. There will most likely be a third surgery some time later on the left side of her skull and neck to remove whatever is left of the mass that they can. It is likely that he will not be able to remove all of it surgically, it is just too large and has invaded too many dangerous areas. The goal is to get it to a point that radiation will be an option for her. Dr. Sekhar told us that this cancer has tremendous growth potential in a child a young as Zoe. She is growing at a fast rate as every child does, which causes this cancer to grow at a faster rate as well. If she was an older child, or an adult, this cancer would not grow as fast. Maybe the fact that this is Chortoid Chordoma will make a difference in this growth rate. I'll hang onto that until I'm told otherwise. So this is the calm before the storm. For now Zoe is home with us. She is on a steroid that causes her to be constantly be hungry. She eats almost non-stop all day. Strangely, this is comforting to me because she has finally gained the weight that I fought so hard for the last 1-2 years to try to get on her, but couldn't. Maybe this will give her body a little more strength for what's about to come. She is also on an emotional roller coaster as a result of the steroid, and from watching her world get turned upside down. We still manage to laugh and have fun at times, but the cancer is always in the room. I never let her out of my sight for more than a moment, and I sleep with my face buried in her hair. Hope and prayer. The two most meaningful words in our lives now.

Colleen Kahl (Zoe's Mom)

Here's the bad news.

The long story is this:

Zoë lived in Eugene Oregon, for the first 4 and a half years of her life. At about the age of 3 years old she started getting sick frequently, and it seemed like it was always bad. She always had a high fever, and vomiting. We were told it was allergies. At this time she started showing signs of sleep apnea. Her Grandfather and I both have severe sleep apnea, so we took her to see a specialist. He gave her some nasal steroids and sent us home. Her frequent illnesses continued, as did her apnea.

In the summer of 2007 her apnea got even worse. In the Fall of 2007 we made the hard decision to move to Portland to attend Portland State University. Before the move Zoë inexplicably hurt her neck, the Dr. said that it was just a sprain and that it would go away. We also noticed a "bump" on the back of her neck, all of the Dr.'s thought that this was just some glands that were inflamed from the tonsil and adenoid irritation, even the Dr.'s in Portland.

We settled in to our new life in Portland and found a primary care Physician, who referred us to an Ear Nose and Throat specialist, Dr. Cuyler. He immediately thought that Zoë should have her Tonsils and Adenoids taken out. We felt like finally something was being done.

In March of 2008, Zoë had her Tonsillectomy at Legacy Emanuel Hospital. During the surgery Dr. Cuyler found a mass in her throat. So he took a biopsy, and told us about it. The biopsy results came back as a "Benign Plieomorphic Adenoma of the Salivary gland". This is very rare in children, it usually happens in middle aged men. So the plan was formed to get a CT scan, so that it could be mapped for removal. They took forever to get the CT scan scheduled, so Zoë's Primary Care Physician, Dr. Evan-Smith called and cracked the whip and got an appointment.

So on April 22 2008, she had her CT scan, and we waited to hear the results. On the 23rd we received a phone call from Dr. Cuyler and he said "wow" this tumor has wrapped around some blood vessels, has burrowed into the Spinal Column, and is trying to burrow into the brain. He wanted us to bring Zoë into the Hospital immediately.

When we arrived at the Hospital, Zoë was immediately put into a neck brace, and bed rest. She had an MRI that very night. A team was formed of: an Oncologist, Dr. Shardy, a Neurosurgeon, Dr. Wehby, A spinal trauma group, and the E.N.T., Dr. Cuyler. Everyone was worried because this type of tumor does not behave like this. There was much contemplation, and planning, but in the end it was decided, by my suggestion via Dr. Wehby, to take a biopsy from the back of the tumor, to see if the aggressive part of this tumor was maybe a different type of tumor. The Neurosurgeon felt that surgery was not an option at this time, due to the nerves and blood vessels that the tumor has wrapped around. The Radiation Oncologist felt that due to the same reason he could not use radiation and not damage the brain and blood vessels. The biopsy was done on Friday, the family was allowed to go home for the weekend, and an appointment was set with Dr. Shardy for the following Wednesday.

On Wednesday, they were told that when the scans were included with the biopsy another type of tumor matched up, Chordoma.

From Chordomafoundation.org

"Chordoma is a slow growing, relentless bone cancer that occurs in the head and spine in people of all ages. Chordoma is typically resistant to chemotherapy and radiation, and is prone to multiple recurrences. The average survival after diagnosis is 7 years; a statistic we are determined to improve."

"Chordoma is a primary malignant bone cancer that develops from remnants of embryonic notochord in the skull-base (head) and spine."

So, all of this new knowledge left us back at surgery as the only option. Dr. Wehby, the Neurosurgeon was out of town at a convention, and would call them on Thursday. When she called she had good news. She was confident that she could not do this surgery, but, at the convention, she ran into the one surgeon that can do this surgery. This type of tumor is his "thing", and he wanted to see Zoë on Friday.

On Friday, the MRI, and the CT scans were hand delivered to his office, and an appointment was scheduled for the following Monday.

Zoë's insurance is the Oregon Health Plan, which will have some difficulty in getting approval for out of state surgery, and experimental drugs.

Please give any donation that you can.

Thank You,
Henry Perreault (Zoe's Dad)

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