Zoe has a Harry Potter birthday party ( before her actual Birhday )

pictures and a movie on the full post (click on the "Read More" link below)

Still in Eugene having fun.

Pictures on full post (click on the "Read More" link)


Zoe and her sister dancing while decorating the X Mas tree.





Zoe has a snow day!!!

BRUSHFIRE FUNDRAISER!

Hi All!
I have some exciting news...a friend of mine has been in communication with a local Eugene business called Brushfire where you can paint and fire unfinished pottery. They have generously offered to sponsor a fundraiser for Zoe. Here is the info:

BRUSHFIRE FUNDRAISER

100% of the proceeds will be donated by Brushfire to Zoe for traveling and living expenses

while receiving radiation treatment out of state.

During the month of DECEMBER

You can go to Brushfire, 954 Pearl St, Eugene to purchase and paint unfinished X-mas ornaments,

1 for $7 or 2 for $10

or purchase ornaments at these other locations:

Moss St. Child Development Center, 1685 Moss Street Eugene, OR. 97403

Centennial Elementary School, 1315 Aspen Street Springfield, OR. 97477

Skate World, 3188 Gateway Loop, Springfield, OR. 97477

Wynant's Family Health Foods, 722 South A Street,Springfield, OR 97477

Bambini South, 2864 Willamette St. Suite 200, Eugene, OR. 97405

Bambini, 205 West 5th Ave., Eugene, OR. 97401

YMCA , 2055 Patterson St, Eugene, OR. 97405

Capella Market, 2489 Willamette St., Eugene, OR. 97405

Bounce Gymnastics, 329 W. 3rd Eugene, OR. 97401

Sundance Natural Foods, 748 E. 24th Ave., Eugene, OR. 97405

where they will be displayed on trees, and paint them later at Brushfire at not extra cost!

We hope to have more locations with trees displaying ornaments for purchase, so....

If you would like to host a tree with ornaments at your place of business, church, or school please contact:

Tanja at:polkadotmaze@yahoo.com

By December 1st

Thanks for participating!

and

Thanks to Brushfire for their generosity!

One Step Closer

After 2 months of reliving every illness Zoe has ever had, Colleen has finished the outline.

We have gathered all of the medical records from the time that Zoe was in Colleen belly. Tomorrow we will go to the Post Office and send the whole package to Boston. It will all be in the hands of Dr. Liebsch.

I am so proud of Colleen, that I have been unable to find words that truly describe how I feel. She has been working so hard on this, and still being a great mom to Zoe. She will now of course be on pins and needles til we hear back from him, but we are that much closer to the next step. What ever that may be.

All I have to say is THREE CHEERS FOR COLLEEN!!!!

HIP HIP HOORAY!!

HIP HIP HOORAY!!

HIP HIP HOORAY!!

Has it been that long?

Wow! I didn't realize it had been so long since one of us posted. Zoe is doing great here in Eugene. She has a wonderful teacher that comes to our place 4 times a week for an hour of school. This is free by the way, supplied by the school district until she has completed treatment. She loves it, and is learning to tell time, count money, the months of the year and much more. Summer is pretty much over, but while we had some sun we really enjoyed it. Grandpa has a big field out his back door, and Zoe's running laps around it every chance she gets, and dragging one of us out to play hide and seek or soccer with her. It's also been so wonderful to be back near our friends. The play dates and "normal" life activities have helped to center us all. As far as Zoe is concerned she's a normal kid who just got sick, but is doing so much better now. She's happy to be feeling better...plain and simple.

I've been on a bit of an emotional roller coaster. Trying to come down still from all the trauma drama that we were living every day not to long ago. It's just going to take time I guess. So, Houston turned us down, but we're in contact with a doc at Mass General in Boston now. I'm writing up (from my point of view) Zoe's complete medical history, chordoma history, extended family medical history, and medication list for him. I'm also gathering all medical records that exist on her to send to him. It's safe to say that I'm about half way done, and I've been working on this for a month already. He will review everything and then decide if he can treat Zoe with proton beam in Boston. Obviously, we are very hopeful that this is it for Zoe. It's not my ideal task at the moment. Reliving every illness that she went through (that I went through with her), pre and post diagnosis is not something I really want to be doing at this moment in time. Ideally, I would be pretending that none of this ever happened right now, and putting my fingers in my ears and singing "lalalalalalalalala" as loud as possible. That's just not an option....this is such an in your face disease and there is no option for denial. So.....I'm doing it and praying every day along the way that this is another source of power that I have in the fight to save my daughters life. It's turning out to be a very long book. Such an important document for Zoe, and when she is old enough I will give it to her to read and keep. She will beat this cancer.

Thanks to all our family that's helping us with the family med. history. The info has been invaluable.

Love,
Colleen

Houston is off

We were set to leave town with the U-haul all packed up on Friday, and we got a phone call from Zoe's oncologist (Dr. Shardy). The proton beam center in Houston is not willing to do Zoe's radiation because she is not a good candidate. They don't believe that they will be able to work around the hardware that is in Zoe's neck from the spinal fusion. The hardware can cause the radiation to splay out and damage surrounding healthy tissue. This was a big shock to find out. We have known from the very beginning that proton beam radiation was Zoe's best chance, and now it's no longer an option for her. Houston has recommended that Zoe receive another kind of radiation called Tomo therapy. Dr. Shardy is currently looking into this for us. We know there are a couple of centers in Oregon, but so far we don't know if they are right for Zoe yet. I'm just trying to trust that everything Zoe needs she will have, and that if proton beam therapy is not right for her, then it's for the best. So, it's another lesson in just going with the flow, because if there is one thing we have been able to count on during this whole journey, it's that plans always change. Just when you think something is set in stone, it changes.

We are here in Eugene now staying with Henry's dad at his cute little townhouse. He has a big field for a backyard that Zoe has been loving. She has been dragging us out to play hide and seek, and to pick blackberries. She is still doing great, and we are getting closer to having the halo removed, and to stopping the iv antibiotics. I'm actually waiting for a phone call today with an appointment date for us to go up to Portland for the halo removal. It will be quite exciting, I haven't seen Zoe's forehead, or been able to give her a real hug since May. Not to mention I won't have to worry about her pin screws poking my eye out anymore. More than anything I look forward to her having more of the freedom to do the things she wants that she hasn't been able to do for months. It's been getting more and more frustrating for her to not run, jump, and do the crazy things a 5 year old loves to do...especially since she has been feeling so much better.

Meanwhile, little miss I'm sucking up life at warp speed has been learning how to read. We have some hooked on phonics workbooks that I bought for her forever ago, and she has been barreling through them! Henry also hooked her up with some computer learning games (reading rabbit) that she completed within a couple of days...she can't get enough! No worries about learning deficiencies or cognitive effects from the surgeries that's for sure.

God grant me the serenity to accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Colleen

Moving!

Hey Everyone! Sorry it's been so long since an update. We have been very distracted having Zoe home, and everything that goes with that. It has been wonderful, stressful at times, but overall really great. She has picked up right where she left off when we started this journey in May. She just has a couple new accessories to tow around now (halo, iv pole, etc.) We couldn't be happier about how well she is doing. The big news is that we are packing up and going back to Eugene at the end of the month. We can no longer stay in PSU family housing because Henry is no longer a student...it's disappointing, but necessary at this point. We will be staying with Henry's dad in Eugene until we go to Houston, and when we return we will be starting over in Eugene. We are all happy about it...it feels comforting to go back to all of our friends and where our major support system is. It just feels right. We are in crazy packing world right now, but we'll try to keep the blog updated more often.

XO
Colleen

Zoe's Best friend comes to visit.

Lets try this again... or Third times the charm

We have come home, again. After 37 days in Legacy Emanuel Children's Hospital we have been discharged. This time we have been in Rehab for several weeks and have had no signs of infection. She is doing great, walking, using her hands, doing most everything that she used to do.
We are now working on figuring out when we can get the Halo off, and starting the process of getting ready for our trip to Houston for radiation therapy. We have many more changes coming up in our life. With the love and support of all of our friends and family, we will persevere.

Henry

Pictures of Zoe

What?!

Zoe is doing great. It feels so good to say that. She has been in rehab for over a week and has made some amazing strides. She is walking, has started on stairs, using both her arms almost equally (she has some left side weakness), and is close to getting her feeding tube out. We will probably be taking her home this Friday. I feel like this time she will be ready. Her spirits are also so much better. She is more interested in playing and having fun than anything else...as it should be. We take daily walks in the beautiful garden here at Emanuel, and yesterday she even played in the grass barefoot, picked flowers, and buried her stuffed animals in a pile of grass. She said "this is the time of my life." My heart was bursting because it was also the time of my life!

She has started on real food again after almost 5 weeks, but is not very interested yet. Her doc said that when young children don't eat for long periods of time they can forget how or no longer be interested in food. She hasn't forgotten how, but she would rather play with it than eat it...even lasagna believe it or not (her favorite). I think if we shut off her feedings through her tube more and give her the opportunity to get hungrier that she will show more interest.

Henry, on the other hand, has not been a happy camper. Last Tuesday he went into the ER with a severe headache and vomiting. He ended up spending three nights in the hospital with a case of viral meningitis. It started out as a simple intestinal bug that lasted a couple of days and then about 10 days later had infected his spinal fluid and turned into meningitis. This can happen when you've been under stress and are immune compromised. Zoe and I never had the intestinal bug that he did, and chances are it never would have gone to meningitis for us if we did have it. He just got lucky I guess. I took him home on Friday, and he's been suffering alone while I stay here at the hospital with Zoe. It felt very bizarre having him sick and in his own room two floors above Zoe, and trying to go between the two of them. The docs actually kept Zoe and I in isolation all day Wednesday before they determined for sure that he had viral and not bacterial meningitis (which is very dangerous and contagious). They were afraid that we might have it because of our close contact with him. He is still very miserable and feeling terrible...and there isn't a whole lot I can do to help. Zoe was actually going to be discharged last Friday, but the rehab doc opted to keep her for another week so she wouldn't have to be home with sick dad. So, hopefully Henry will be feeling better soon, it takes 7-10 days for the virus to process out of him just like any other virus. He has been having waves of feeling a little better, and then back to feeling terrible so it's hard to tell where he stands.

missing you all!
Colleen

It's Been A While....

Sorry for the lapse...Henry and I have been putting it off. Here's the short version: We took Zoe home from Harbor View on July 4th thinking yeah! Independence Day. We got semi settled at home with a visiting nurse and at home IV infusions of antibiotics. Two days later Zoe spiked a high fever and was vomiting, and we've been at Emanuel Children's ever since. She is doing better today, but we are NOT in any hurry to go home. She had the docs a bit stumped because she had all the signs of a major infection brewing (aside from the ones she already has), but the docs couldn't figure out where it was coming from. In the meantime, she had a new long term line placed, has been getting potassium, phosphorus, and amino acids in her feeds, physical therapy, occupational therapy, art therapy, and a group of docs that have been watching her like hawks. It's quite nice to have her oncologist overseeing things for us now, because in Seattle it was just a bit of a free for all with no real system of communication on any level. Her spirits have improved and she is getting a lot more active! There are a few concerns, but the big picture is looking a lot better...I'm praying that it stays that way. She is still on the tube feeds for another couple of weeks until her ENT says her pharynx is all healed. Zoe has been very tolerant of this...she really understands how important it is for it to heal completely and that it takes kind of a long time. She is being weaned off of the steroid and pain med which we are thrilled about! The less drugs the better. The infection in her neck appears to be under control, but only time and repeat scans will tell. She has cleared the C. Difficile infection in her gut, and has been taken off isolation so she can leave her room!!!! Very exciting for us after being trapped for a month wearing robes and gloves! Her gut is still healing, the colitis did a number on it, and she has been losing protein through her intestinal walls which cause her albumen levels to drop, this will heal in time.

Henry and I both proceeded to get sick these last few days...it all just caught up with us. We're doing ok, and thank goodness nana came to visit for a few days on her way back from Hawaii to Colorado. She has screwed my head on a little straighter for me, and given us a break. I will be so sad to see her leave, because I have no idea when we'll see her again. So, it's all about healing and getting stronger right now, and then it looks like we'll be going to Houston, TX for a couple of months of radiation. Loma Linda isn't going to be the right place after all it appears.

Try to keep you updated.
Colleen

Out of the ICU

Zoe got out of the icu today which is always a good sign, even though we prefer the solitude up there compared to the peds unit..."crazy town." Her heart rate has come down tremendously, 100-110/min down from 170+/min. Her transfusion and albumen (a substance that replaces protein in the blood) treatments have perked her up a lot. She is still retaining lots of fluids, but the docs are watching her levels pretty closely. We're still not sure where she stands with the C Dif., her belly is still distended, but the docs are comforted by the fact that her tummy is gurgling, relatively soft, and she's tolerating her feeding for the most part.

A ct scan last night came back looking good this morning. Dr. Sekhar thinks that the infection in her neck looks good right now, but we'll be doing another scan early next week to check again. Another surgery to clean out the infection may still need to happen.

While I was sitting in the ICU waiting room today eating some breakfast (we don't eat in front of Zoe because she can't eat), I heard a man say that there is no way he can stay here at the hospital with his son for more than two weeks or he'll lose his mind. In the beginning I felt the same way, but amazingly we've adapted to this environment. It was so hard coming back here after having a taste of home and getting into the mind set of being done with this part of the journey. It took a couple of days, but we've slipped right back into the space we were in when we had no idea when we would be taking Zoe home. We're going to be OK. So will Zoe. She's sad right now, but coping pretty well. I've been so worried about her emotional state, but I'm reassured by her smiles today. She is so amazingly strong...I'm convinced that she can do anything.

Try to keep you informed, and thanks to everyone for your love, comments, financial help...everything.

Colleen

How Zoe's Doing...

Zoe is still in the ICU today, and we're still waiting and seeing if more surgery will be needed. Her blood tests came back showing that nutritionally she is very depleted. Her blood vessels are leaking fluid all over into her body so she is very puffy, and right now she is getting a blood transfusion to try to help replace protein, iron, and other nutrients into her blood. She has a fever, elevated heart rate, and is still very lethargic. Her body is processing her feedings, so that is a good sign. The neurosurgeons are going to take her dressing off later, and check out her wound and drain.

Luckily I think we've figured out our hotel situation with DHS which is a huge relief. Living in the hospital is the fast lane to going insane, and that's the last thing Zoe needs for us to be heading for. Henry and I take turns doing the night shift at the hospital, so that at least every other day we're getting decent sleep, and a bit of an evening break to have some alone time.

Today I'm feeling a little all over the board. Zoe's belly is distended again, and her blood counts are fluctuating up and down every day. She has so much going on. I'm struggling with not knowing definitively which direction she is going in. Is she getting better or is she getting worse? We don't know yet. All the meds that she's on are "let's see how she does on them" meds. As far as the way she looks...not as good as yesterday in my opinion. I'm trying to relax, and trust that the docs have her on the right path, and to just pray, and trust that her body will find the strength it needs to fight these infections. She is very strong in spirit if not in body, and I really have to dig deep now to keep my spirit strong for her.

Colleen

Back In Seattle...

Our homecoming was unfortunately not what we hoped it would be for Zoe. We got home last Thursday, and by Saturday we had Zoe at Emanuel Children's Hospital in Portland with what we thought were complications surrounding the C Dif. infection. Zoe's poor little belly was immensely distended, and her oncologist feared that she might be headed for toxic mega colon which is extremely dangerous. She was retaining fluids in her abdomen as well as other areas, and there was swelling in her colon. She immediately became NPO (which means she couldn't take any food or drink). Since Zoe was put on the dex steroid her body tells her that it's hungry night and day and is essentially insatiable. She proceeded to literally scream for the next two days from hunger, and on Monday morning we sat her up to take her to the potty and found a stream of discharge going down her back from her first op site. To make a long story short Zoe and I ended up being life flighted back to Harborview in Seattle, and she was in surgery the next morning for a an infection in her op sites. Dr. Sekhar went into her original op site and flushed out all of the infection, Dr. Mirza removed a lose piece of her bone graft that was infected, and the ENT Dr. Moe repaired her pharynx. Turns out there was a "communication" between the injury to her pharynx and her neck down to her collar bone. What this means is that when they did the first surgery they removed some tumor from her pharynx and stitched it up, but it apparently never healed completely so when she began to take food and drink again this caused an infection which then spread to the inside of her neck. The infection is quite complicated and she may require more surgery to clean out the infection again, and the ENT doc may need to do more repair on the pharynx by pulling some muscle from her neck to help close the hole. This tissue separating the inside of Zoe's throat and the inside of her neck is quite thin and delicate so this makes it tricky. Zoe will not be able to eat or drink for at least a couple of weeks until her pharynx is completely healed. She has a feeding tube again which I know she won't be too happy about, but the docs here think we're getting a handle on the C Dif. so she is able to have her feedings. Zoe will be on IV antibiotics for three months to make sure that this infection is completely eliminated. We don't know how long we'll be in Seattle this time around, but after this experience I'm really in no hurry to get her out of here. I want to be sure this time that all is well. That was a very terrifying experience for all of us, and especially traumatizing for Zoe. There was really no way of knowing that this was brewing, her CT scan right before we left for home didn't show a thing. It must have been silently brewing for some time, and then for whatever reason blew up into a full blown infection. All the docs here have been wonderful...so very concerned and sensitive to all of our needs. Dr. Sekhar, and the other surgeons that operated on Zoe yesterday made themselves instantly available for her (which is no small task), and I am so grateful to them. Today I feel reassured that all will be OK....there were a few days there that we didn't know what was going on inside her tired little body, and my mind inevitably went to the scariest places. It's so true that the devil you know is better than the devil you don't know.

Right now Zoe is resting. Her white cell count has gone down (that's good), she is getting nourishment through her feeding tube, no fever, and the docs feel good about how she's doing....which means I feel good. Now it's the wait and see game. Henry and I are doing our best to take care of ourselves. We're trying to get a place to stay lined up again, but running into some trouble because DHS is not returning our many phone calls. It looks like we may be living at the hospital after tonight, but we're remaining hopeful that they will come through at the last minute.

Zoe's awake and it's time for me to read some more Harry Potter....gotta go.
Love and miss you all.

Colleen

Arrrrggghhhhh!

Zoe just can't catch a break. Just after her last surgery, she contracted a stomach bug (we posted about this earlier). We are now back in the hospital due to complications surrounding the C. Diff.
At first we thought that she may have developed a condition called Megacolon (you an google it), but after a CT scan, one of the Dr's says that most of the swelling is fluid in the abdominal wall, and other tissue. While we are still not possitive about the cause, we are hopeful about the prognosis. I am a bit frustrated that we were being told again that it was nothing to worry about, when it is. It tells me that as parents it is our job to make sure that the right questions are being asked, and that we are finding difinitive answers. The main thing is that we are staying ahead of each of these things, as we find them. I just wish we could stop these things, before they happen. We were supposed to be having a break to heal and enjoy the summer.

Henry

We are home!!!

It was not a fun trip, but we survived it, and we are home.

Henry

--
William Henry Perreault
(541)543-6231

Going Home....Finally!

I finally feel confident in saying that we are finally going home! It's been a wild ride, and there's been a lot of ups and downs. This chapter is coming to a close and we beginning the next.Zoe is slowly recovering from her intestinal infection so we feel good about taking her home. We will be staying at our apt. in Seattle until Thursday and then heading back to Portland. Dr. Sekhar does want to see her here again in two weeks for some scans to see how her healing and bone growth is doing. Sounds like radiation will begin in two months. In the meantime it will be rehab in Portland.

We will post more this weekend.

Colleen

Diagnosis

Ok......so, first of all, don't worry if you came to visit Zoe recently, you are not at risk for getting this kind of infection unless you are immuno-compromised or have had long term antibiotic therapy recently. Zoe has contracted a very contagious (to other hospital patients) bacterial infection called Clostridium Difficile. She will be started on an antibiotic called Flagel today, and will be retested for it after one week to find out if it has gone away. I'm very relieved that we know what it is, and she can be treated now, because it is not fun to watch her suffer with no end in sight. It's another bump in the road that we need to get over, but we will. I will say that this is not a good time for anyone to visit unfortunately. Henry and I are required to gown up, and wear gloves the whole time we are with her to prevent spreading this to any other patients we may come in contact with. A testament to how strong Zoe's body is...her fever and white blood cell count has gone down today from yesterday without any treatment yet! She is amazing! She should be able to go home with antibiotics in a few days.

Colleen

Sickies

So, there has been a set back in our plan to go home. Zoe has come down with a nasty gastro-intestinal bug that is making her life pretty miserable. The docs have run every test there is to figure out what it could be, and everything has come back negative so far. They think it's a bug that is common in a lot of long term hospital patients that essentially happens when the good bugs in your intestines are killed off from antibiotic treatments, so the bad bugs take over. She's in lots of pain, stomach cramping, vomiting, diarrehia, the works. It's insult to injury, having gone through these surgeries, and then to have to deal with this. If it is what they think it is, then she will need more antibiotics, and she is being started on some acidopholis today to try to build up her good bugs. In the meantime they are giving her IV fluids, and anti-nausea meds. We probably won't get results back until tomorrow, and hopefully headed home in a few days. We'll see. Keep you posted.

Colleen

PayPal

Due to the fact that we are not a 501c3 non profit organization, paypal has denied us their services. We are currently working on another online solution. At this time you can deposit into a contributor account at any Wells Fargo by asking the teller to deposit into the account for Zoe Perreault.

Going Home?...

Yesterday we were told by Neurosurgery that Zoe could go to Seattle Children's Hospital as soon as they would have us. We just needed to talk to the Rehabilitation services first. Rehabilitation services said they would be ok with us going to Legacy Emanuel in Portland.
This morning the Rehabilitation Services Attending came in and evaluated Zoe, and he felt that not only could we go back to Portland, but we would only need to do out patient rehabilitation, so we have done a consultation with Physical Therapy, and are waiting to do a last minute CT scan, then we should be getting discharged. of course now that I said that we will end up getting stuck here for another week.

Everyone is saying that we an go home but no-one is committing to it. We have been hoping for a solid plan, but we are not really getting one.

Well my biggest hope for Fathers Day would be to be home and have both of my girls with me for the day.

So Dr. Sekhar
has said that, he is sending down the post op MRI to the Loma Linda Univ. Medical Center
, upon review they may want him to remove the remaining tumor, or they may feel like they can get them with the radiation. If they want him to remove them, he wants to wait for 2 months before doing so. If they feel that they can radiate them, then he thinks that they would want to start in about 2 months.

So it looks like we will be in Portland for at least the next 2 months either way. I wonder how this will work with the Halo on, I can't imagine that they would radiate with the halo on, and if we have another surgery that may extend the time that she has to wear the Halo. The Orthopedic surgeon, Dr. Mirza said that he would like to see 3 to 6 months in the Halo, but that the pins only last for 3 to 4 months. Well, I guess we will just have to roll with the punches like we have been, and it will work out how it is supposed to.

Thank You
Henry

Final Results

Dr. Lee came by last night to show us the post-op MRI. Unfortunately, not all of the tumor made it out. There are two small pieces that remain next to her spine, but at this time they are not threatening her spinal cord. Dr. Sekhar is not planning to remove them unless it becomes necessary to later. There is the possibility that they may not grow, that the radiation she will have will take care of them, or that they could go away on their own.
I personally am hoping for the latter. On the other hand, they may begin to grow, and need to be removed during another surgery in a few months. We'll see. Seeing the MRI was amazing! When the tumor was first discovered we viewed her initial MRI which was devastating. Now I've replaced that image in my brain with the current MRI and it is such a relief. Dr. Sekhar is a truly gifted surgeon, and has accomplished what no other doctor thought was possible. The amount of gratitude I feel is overwhelming...I don't know that I will ever be able to express it in it's entirety.

Zoe is doing great. She is currently asleep in her "princess chair"(the comfy chair that sits next to her hospital bed). Her pain is under control, and I'm pleased because she is becoming more communicative about her pain. After her first surgery she was expressing it in other ways such as through anxiety, anger, and crying which you can't always rely on to be indications of pain.
We didn't want to over medicate her, but she would often times deny having pain, because she was more afraid of what would be done if she admitted to it. Now she know the process, and is more comfortable with what goes on in her daily care. She's eating, drinking, and is frustrated that her body is not quite ready to get moving again the way she wants it to. I'm also happy because after this last surgery they put a smaller halo brace on her. The last one was apparently too big for her (which leads me to wonder why they put it on her in the first place...but I'm not going to dwell on that), and I think she will be able to adapt to it easier.

Not too sure what the next week holds for us, but we'll try and keep you posted. She should be out of the ICU, and down in the Pediatric Unit ie. "Crazy Town" by the end of today or tomorrow. Woohoo!

"Hope" is the thing with feathers-
That perches in the soul-
And sings the tune without the words-
And never stops-at all-

And sweetest-in the Gale-is heard-
And sore must be the storm-
That could abash the little Bird
That kept so many warm-

I've heard it in the chillest land-
And on the strangest Sea-
Yet, never, in Extremity,
It asked a crumb-of Me.

-Emily Dickinson

Thanks for all your love!
Colleen

Super Zoe!!!! or The tumor is gone!!!!

At 4pm Dr Sekhar came to tell us that he removed everything that looked like tumor. He could not be sure hat he got everything until after the post OP MRI. 2 hours later Dr Mirza came to tell us that it went well, but he wasn't happy with the angle that he had to approach the bone graft from, but he feels good about the placement. He wanted to get a CT scan directly after the surgery and he may want to go back in and move it. We did not hear from him again all night, and by 7:30pm Zoe was in the ICU, resting.
Colleen spent the night with her, in the ICU. This morning Dr Lee(he is part of the Neurosurgery team) Said that the scans looked good (as he smiled). She has her breathing tube out this morning, and is starting to take things by mouth again.

We have not had anyone say for sure that all of it is gone, but that is the distinct implication. Now we are looking to Radiation probably in Loma Linda California.

More info later
Love you all
Henry

Last Surgery

The docs let us take Zoe to our home away from home last Wednesday for a short hiatus. She was doing so well, walking, taking all her meds with no problem, and Henry and I had taken over on much of her daily care because we feel better being more involved, and it's less scary if mommy and daddy can do it instead of the nurses. It felt so good to take her away from all of this necessary chaos. For as much healing takes place inside of hospitals, they can also be quite toxic. It's almost impossible to have uninterrupted rest, there is trauma happening sometimes in the bed right next to you, and for a child the constant barrage of white coats speaking about you in a language that you don't understand invokes nothing but terror. I got to rescue Zoe from all of this for four whole days! We went grocery shopping, to the bookstore, to the Japanese gardens (Zoe loved feeding the Koi), and just hung out. Zoe rested, ate, rested some more, and ate some more. Lovely.It was incredibly difficult to bring her back to it all this morning, but I'm so comforted with the hopeful, although not guaranteed knowledge that this should be her last surgery...at this point anyway.

Dr. Sekhar will be attempting to remove the rest of her tumor from the left side of her head this time. Dr. Mirza will also be going in to perform another bone graft on her spine. The surgery is expected to run 8-10 hours, and she will go directly to MRI and CT afterwards. Zoe went into surgery without any meds to relax her, and she did amazingly well. Sadly, she is getting used to the pre-op routine. We read to her while waiting for surgery, and this time she just lied there with her eyes closed and listened, only getting upset when a doctor or nurse came by. It's going to be a long day. We'll post how she did tomorrow.

Colleen

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.

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Thank You,
Henry Perreault (Zoe's Dad)

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