an ordinary life...

Wow, what a difference just a few Months can make. We have been negligent in posting to the blog for a while, and with all that has been going on, we forget to post the good things.



While in Boston, we moved to an apartment provided by a wonderful organization, called Hospitality Homes. I was nice to be alone, where we could relax, and be at home. We settled into life in Boston, and began to really enjoy it, in spite of the effects that daily radiation was having on all of us. When the time came for us to leave, we were happy to be going home, and sad to be saying goodbye. Somehow I know that someday we will return.

Upon returning to Oregon, we tried to settle in, and get out and enjoy the remainder of the Summer, simultaneously. We had a lot of fun, and we processed a lot of our stress.

Zoe started 1st grade, and loves going to school, except on Mondays. She has decided that she really doesn't want to tell everyone about her Cancer, and where she was this Summer, that would lead to talking about her Cancer. So, while Principle Scott is freaked out when she goes running across the playground, we trust in her to stay safe, and just be a regular kid, she really loves that part.

We have been going to several Candlelighters for children with Cancer, events, and both of the girls have loved that. Getting out of the house, to the Coast, and local parks, reconnecting with friends, and focusing on getting back on our feet. Zoe has shown us that what is really important, is living your life, and enjoying the ordinary moments.

We may not post as often as we would like, but we will stay in touch.

Celebrate Zoe's "End of Treatment" party with us! it's a suprise party

Location: Amazon Park
2700 Hilyard street
eugene, OR 97405 US

When: Saturday, August 29, 11:00AM to 2:00PM

We are CELEBRATING Zoe's "End of Treatment". Come and help us Honor Our Superstar!!!

Sandwich fixings, some beverages, and dessert will be provided. Please, bring your favorite "Potluck" dish to share.

After the party, we will be going next door to Amazon Pool. Bring your swimsuits, we would love to see you there!

Please RSVP by Wednesday the 26th,

Please do NOT bring any gifts for Zoe, YOUR presence is enough!

We are having a fundraiser at Papa's Pizza Parlor in Eugene, Oregon. Print a copy of this flyer (download flyer here) Bring it into Papa's Pizza on W. 11th ave at Chambers st on June 30th. 50% of your order total will go into the Zoe fund. Feel free to print extra copies and hand them out to all of your friends.

Thank You for all of your help
Henry, Colleen, and of course Zoe.

A Day in The Life of Zoe....

Hi All!

Wow! I can't believe we've already been here for 3 weeks! Zoe just started treatment last Wednesday, and so far she is doing great with it. She is starting with photon therapy, and will begin proton this Wednesday. A day in the life of Zoe goes something like this:

Wake up at 9 and harass mom and dad until we wake up (we're still running on Oregon time, so she's actually waking up around 6....so don't give us a hard time about sleeping in).

We all share a bedroom on the third floor of the RMH (Ronald McDonald House). We trek down to the 1st floor for coffee, breakfast, and cartoons, and then we're off running. We hike about a 1/4 mile to the T station (Boston's subway), and catch the green line to wherever we're headed. Today we went straight to MGH (Mass General Hospital), and did radiation first, and then we headed home for lunch, and then out to a movie. Our radiation schedule is always fluctuating, there is no set appt. time every day. Now we're home doing laundry, and making dinner.

We live on Kent street in Brookline (a Boston suburb) which runs right between Beacon St. and Harvard St. Both of which are peppered with little stores, restaurants, and parks. We've been exploring our little neighborhood quite a bit. So far we've become regulars at the local Trader Joes, Stop N' Shop, Pete's Coffee, The Upper Crust pizza joint, and CVS Pharmacy (It's like Rite Aid). Not too exciting, but we gotta eat.

Outside of Brookline we've explored a little bit of Boston...the pics are from The Public Gardens which is very beautiful with a big lake and swan boats. We've also been out to Cambridge a couple of times, and visited The Harvard Museum of Natural Science.

Most of our time is spent commuting (via subway, bus, and foot) wherever we want to go. Mass transit is a beautiful thing, but can be quite exhausting!

In other news we are expecting Zoe to have aprox. 36 radiation treatments total, and they are once a day, 5 days a week, and last about 5-10-15 minutes per treatment. Zoe has a special mask that was made to fit only her that she wears, and is hooked to the table that she lays on to immobilize her head. Then she just lays still for the treatment, and listens to music ( so far it's been the Lion King soundtrack) until she's done. She's in there all by herself, and it's with the lights dimmed, but she is SO brave and comes out smiling every time. She doesn't like her mask because it's tight, but it's better than having an iv port, and going to sleep every day for treatment like the little kids do! Fridays are very special here because it's toy day at the proton center! Zoe gets to choose a toy from the toy closet to keep, and they are all cool toys! Not cheesey dollar store toys, but fun ones that she would choose from the store if given the chance. We are resolved to the fact that we'll have to buy another suitcase when it's time to go home just for all the toys, and stuffed animals that Zoe is accumulating!

We're all doing really good for the most part. It has been a somewhat difficult adjustment living in a very crowded house, not having a car, and learning to cope with the doctor visits etc., and homesickness. I think we're over the hump though. It's been hard for Zoe to be without her friends, and sister....especially because there are any kids her age in the house right now. The side effects of the radiation will probably creep up on us in the next couple of weeks, so we are trying to enjoy this "feel good" time.

We'll keep you posted...thanks for all your well wishes!!!!
Colleen

I like Boston

Zoe: I love dogs in boston

Zoe

So that everyone knows

We are still receiving mail at P.O. Box 2042 Eugene, Oregon 97402.

If you want to send something to Zoe you can for the time being send it to 229 Kent st.
Brookline, Ma 02446

We are not sure how long we will be here at Ronald McDonald House, but we will post any new info if we move.

We Made It!

We arrived in Boston on Sunday morning 4:45am Boston time....2:45 Boulder time. Zoe slept for almost the entire flight from Pheonix to Boston, Henry stayed awake to spare everyone of his snoring (poor guy), and I was tortured with the task of trying to be a good bed for Zoe to lay on, and attempt to find a way to get a little sleep myself. This turned out to be the impossible dream!

After arriving we took a shuttle to the Holiday Inn a few blocks away from the Ronald Mcdonald house (which we were told we could not check into until 9am). We stowed our luggage there, and attempted to get some food at their restaurant...btw I don't recommend trying to find breakfast at 6am at Holiday Inn. Then we decided to walk over to Ronald Mcdonald and check it out because, well, it was either that or fall asleep in the Holiday Inn Restaurant (which we almost did). So we started our stroll through the early morning streets of the "Brookline" neighborhood of Boston. It was sunny, the birds were singing, people were out walking their beautifully manicured dogs, and EVERY house we saw was of mansion status, and stunning! We were staggering, still half asleep, and I literally felt like I was dreaming. We found Ronald Mcdonald house at around 7am (also a mansion, and stunning), drug ourselves up onto the front porch, and fell asleep on their patio furniture...which was really quite comfortable. Henry was the ever diligent hero, and walked back over to the Holiday Inn, and brought our luggage back to the house via taxi right on time for us to ring the doorbell at 9am. We checked in, slept, and then checked out a little of the neighborhood. Found a super fun park already, and a Trader Joe's too! Woohoo!



This morning after all of us having a good 10-12 hrs of sleep, we got up, got ready, and headed off to find the shuttle that would take us to Mass General (MGH). We headed for the Proton Center, not really knowing what to expect, and we were very pleasantly surprised! There was a music therapist in the lobby that Zoe hung out with, and sang with while playing the drums. Then we met with nurse Kathy that hooked Zoe up with stickers, crayons, paper, a little piano book, and much more to keep her happy. Then Dr. Liebsch came in smiling, and proceeded to talk with Zoe almost exclusively for about 15+ minutes. She was attentive, responsive, perfectly poised, and mature beyond her years! He was kind, spoke to her on her level without being demeaning, and truly AMAZING! He set up a rapport with her that has just set the foundation for this entire experience! Truly priceless! We could not have started out on a better foot!

Dr. Liebsch then proceeded to take Zoe to a procedure room, and made a "immobilization device" (a mask) that she will wear to keep her still during treatment. The making of this could have been anxiety producing for her, but with the rapport established between her and Dr. Leibsch, it ended up being fun. Henry and I just sat there in stunned silence. This was probably the most positive experience we have ever witnessed between Zoe and a doctor!

I am feeling so grateful for this day, and for all the days that will come! Zoe has grown so much this past year, both physically, and emotionally, and I am so proud of her.

Will keep you updated,
Colleen

Boulder

We have been in Boulder since Tuesday, and Zoe is just loving life. We have been on several hikes, and one of them was even successful. The altitude has been getting to her a little and with the excitement of being with her Nana, she has been in high gear since we landed. She has been waking up at 6 am every morning (somebody forgot to tell her about jet lag). Saturday we get back on the plane to Boston with a 2 hour layover in Phoenix. We will be scrambling to get settled then we have appointments all day monday through Thursday. Zoe will start Radiation the following Monday. It will be nice to settle in a little, I dislike living out of a suitcase. We will try to post some pictures of our hikes next week. Thank all of you for all of your love and support .

Boston or Bust!

The day has finally come! We have a plan for going to Boston! Dr. Liebsch called this afternoon and wants to begin Zoe's radiation treatment process on June 1st. In the past month there has been some talk of trying to surgically remove the remaining tumor in Zoe's neck and throat, but after much contemplation from various docs, the conclusion is that this will not be possible without major nerve damage....so radiation it is. Radiation won't eliminate the remaining tumor, but hopefully it will prevent it from growing. We'll keep praying for researchers to come up with some chemotherapy that proves effective on chordoma in the near future. That would be amazing!!!!

So, once we get to Boston, the plan is to do various scans and such so that Dr. Liebsch can map out a plan of attack, and then proceed with 8 weeks of radiation. He's hoping we can do this without having to place a central line in Zoe, meaning that Zoe will be able to do the treatment without any sedation. I have faith that she can do it, and Dr. Liebsch seems to be very patient and willing to work with her to make her comfortable with the process.

I'm excited that we have a plan, and that we'll be finished with radiation before the next school year begins. It looks like Zoe will be able to start first grade next year! She's been doing kindergarten from home this year. I'm also feeling very grateful that radiation will only take 8 weeks...I was thinking it would take at least 12 weeks. I'm very happy to be wrong!

Boston in the summer time...as long as Zoe's feeling well, we'll never be short of things to do. We've met some friends through the Candlelighter's program that have a 4 yr. old daughter that went through radiation in Boston, and they were very happy with her treatment, and raved about how fun Boston was. That's very reassuring to me. I've been a little anxious about being strangers in a strange land...with no car AAAAAHHHHHHHHHHH!

Zoe has been doing great lately. We recently got a membership at the local YMCA, and Zoe and her sister Sky have turned into fish. Everyday after school we are asked the same question in unison...."can we go swimming at the Y? Pleeeeaaaase!" Both of them are turning into excellent doggy paddlers. I'm such a proud mommy! I've also gotten back into swimming...the only sport I was any good at growing up, and I think I might even join the city team when we return from Boston. It's very therapeutic, and meditative to swim lap after lap after lap.

So, it's time to start getting ready for the next step. I think we're ready to get this done and over with.

Colleen

important legislation needs our help.

As you know, many patients with rare cancers like chordoma face unique challenges in getting the care they need, and effective treatment options can often be hard to come by. Hundreds of thousands of Americans suffer from rare cancers, yet our medical and research system remain geared primarily towards common cancers - even though new scientific advances reveal that there are many rare sub-types of these so called common cancers.

I'm writing because we have a small window of opportunity to give rare cancers the attention they deserve - and you can help!

As you may have heard, Senator Edward Kennedy from Massachusetts and Senator Kay Bailey Hutchison from Texas recently introduced the most important piece of cancer legislation in over 30 years. It's called the "21st Century Cancer ALERT (Access to Life-Saving Early detection, Research and Treatment) Act" and it aims to launch a forceful new assault on cancer, called by some the "War on Cancer Part II."


Until a few days before the bill was introduced it contained a major section called "Advancement of research of rare and ultra-rare cancers," which would have leveled the playing field both for patients with rare cancers, and for the researchers who fight to save our lives. Unfortunately for all of us, this important section was removed at the last minute without consulting the experts who helped craft this vital legislation. This is appalling!

Thankfully, we have an opportunity to get this section re-added. The bill will be revised by members of the Health Education Labor and Pensions (HELP) committee on April 29th. Between now and then we need to do everything possible to let Senator Hutchison and Senator Kennedy, and all senators on the HELP committee know just how important this legislation is.

Your phone call can make a big difference - even a few dozen calls could help change a senator's position. So, please take a few minutes to tell congress to do the right thing by giving rare cancer patients the attention we deserve!

Here's how:

Step 1

Call senator Hutchison at 202-224-5922 AND Senator Kennedy at 202-224-4543 and ask to speak with their healthcare legislative assistants. Briefly explain your own experience dealing with a rare cancer and urge the senators to include the rare cancer provision in the bill.

1. Use personal/emotional testimonies about challenges of dealing with a rare cancer
2. Explain that historically most funding and research has gone towards common cancers leaving those with rare and ultra rare cancers (like Senator Kennedy and his son, Teddy, Jr.) without hope
3. Studying rare cancers can lead to valuable discoveries for common cancers
4. We aren't asking for special treatment, just equal treatment!\

Below are some highlights of the rare cancer sections as well as some additional talking points you might want to use. It's important to keep the message simple (the rare cancer section should be included in the bill!), but these may help if the staffers ask questions.

Step 2

If one of your senators is on the HELP committee(Jeff Merkley (OR) 202-224-3753), please urge them to support the Cancer ALERT bill (a list of the HELP committee members is at the end of this email). Mention the importance of including rare cancers in the bill, but focus on supporting the bill in general.

Step 3

Please forward this email to anyone you know whose life has been touched by rare cancer.

The senators are seriously considering re-adding the rare cancer section, so if enough of us call in we have a real chance at success. We are working with the Lance Armstrong Foundation as well as several other rare cancer organizations to rally as much support as possible. There is power in numbers, so let's make our voices heard!

Onward!
Josh

Cofounder, Executive Director
Chordoma Foundation
#########################

Rare Cancer Provisions

- creating centers of excellence for rare cancers
- creating a rare cancer registry to study the natural history of rare cancers, and identify isolated responses to therapy
- a rare cancer scholars program to encourage investigators to venture into studying rare cancers
- accelerated FDA approval for drugs with an indication to treat rare cancers
- mandating that insurance companies cover rare cancers, and allow treatment at centers of excellence

Additional talking points

Rare cancers are a major problem - they deserve our attention
- There are hundreds of rare cancers which together make up a substantial fraction of cancer (large problem)
- The advent of molecular medicine has revealed that most if not all cancers are rare on a biological level - even common cancers like lung or breast have dozens or hundreds of rare subtypes.

Rare cancer patients are an underserved population - we must level the playing field
- Most patients with rare cancers have a harder time finding appropriate care
- Most rare cancers have fewer treatment options, and no hope of a cure any time soon
- drug companies tend to neglect rare cancers

Rare cancers present a valuable scientific opportunity - we should embrace a focus on rare as a new model of cancer research
- advances in rare cancers can be translated into effective treatments for subsets of common cancers that share similar biology
- given that each individual's cancer is rare, to win the war on cancer, we need to redesign our research enterprise to fight the war on many fronts - to think of rare as the norm, not the exception. the war will not be won with blockbuster drugs that treat hundreds of thousands of patients, but rather by curing 1,000 or 10,000 patients at a time.



HELP Committee Democrats by Rank

* Edward Kennedy (MA) 202-224-4543
* Christopher Dodd (CT) 202-224-2823
* Tom Harkin (IA) 202-224-3254
* Barbara Mikulski (MD) 202-224-4654
* Jeff Bingaman (NM) 202-224-5521
* Patty Murray (WA) 202-224-2661
* Jack Reed (RI) 202-224-4642
* Bernard Sanders (I) (VT) 202-224-5141
* Sherrod Brown (OH) 202-224-2315
* Robert P. Casey, Jr. (PA) 202-224-6324
* Kay Hagan (NC) 202-224-6342
* Jeff Merkley (OR) 202-224-3753

HELP Committee Republicans by Rank

* Michael B. Enzi (WY) 202-224-6244
* Judd Gregg (NH) 202-224-3324
* Lamar Alexander (TN) 202-224-4944
* Richard Burr (NC) 202-224-3154
* Johnny Isakson (GA) 202-224-3643
* John McCain (AZ) 202-224-2235
* Orrin G. Hatch (UT) 202-224-5251
* Lisa Murkowski (AK) 202-224-6665
* Tom Coburn (OK) 202-224-5754
* Pat Roberts (KS) 202-224-4774

Here's my favorite of many that were taken of Zoe and her older sister Sky (age 8) just a couple of weeks ago. Beautiful Girls!

Hi All!
Thought it might be time to update some photos of Zoe since it's been a while. This was a day at the big park by the Willamette River in Eugene. It was actually my birthday (mom), and it was truly a wonderful birthday! I felt such gratitude in my heart that day that I thought I would burst with joy! Watching Zoe play and laugh was the best present ever!

Last Monday we made the trek to Portland for CT and MRI scans, as well as an endoscopy of Zoe's posterior nasal pharynx. It went pretty smoothly, and we incorporated as many distractions as possible for Zoe to make the trip mostly fun with a little yucky, rather than the other way around.

We stayed at the Ronald McDonald House next door to Emanuel for the first time. It was really nice, and sooooooooooooo convenient! We literally woke up at the crack of dawn, and walked across the parking lot to check in at the hospital. So much easier than driving from Eugene at 3am to make the 6am check in, or even staying across town with friends and driving for 20 minutes when you're half asleep. The only down side was that we had to return, and wash all our bedding and clean our room before we could check out. Oh well, it was worth the zero dollars we had to pay for it, plus there was "community" food in the fridge that we ate, and cool toys for Zoe to play with! We managed to connect with some friends while in town too, and Zoe had a great time.

As for the results of all the tests, we waited patiently for a week to hear something, and then Henry caved and called Zoe's oncologist's office. He didn't actually speak to Dr. Shardy, but was given the message from her that Zoe's scans show that she is "largely unchanged", and that her pharynx is where it is "expected" to be in the healing process. We are still waiting for a phone call and some more clarification, but all of this sounds like good news! We're getting closer to Boston finally!

We are so sorry for the lapse in updates.

It has been a ridiculously long time since we have updated, and we are sorry.



We were accepted into one of the housing programs that Colleen had applied for, and decided that, since we were not 100% sure when we are going to Boston, maybe we should take the offer and get a home of our own. We are eternally grateful to Grandpa Kit for letting us stay with him for so long, and for continuing to Cat sit for us until we get back from Boston. I has been very nice having our stuff back and getting some time to be normal before we go on to continue this adventure.

We have changed our P.O. Box to one that is closer to our new apartment, the new mailing address is:
P.O. Box 2042
Eugene, Or 97402.

All mail sent here will be forwarded on to us where ever we are.

A Little News.....

After much waiting I called Dr. Liebsch and left a message with his receptionist last Friday. He called us back yesterday, and said that he had completed his review of Zoe's case.
"
He wants her to have a CT and MRI done. Afterwards, he and Dr. Sekhar will review the results, and barring any regrowth of the tumor, he wants to make plans to have us come to Boston. He said that the complications from the tumor going into the pharynx, and the damage done from the infection has made the tissue very delicate so that is,in part, the reason why he has not moved faster on getting Zoe into radiation. He has wanted the tissue to heal adequately before radiating it. He also said that Zoe's is the most advanced case of Chordoma he has ever seen. I think that means the biggest. I'm not surprised by this, but it sent me back to that space where I second guess myself.

I'm very happy that we are starting to move forward again, because that means we're getting closer to being done with her treatment. I definitely have some anxiety about what the CT and MRI will show, but I know that no matter what we'll figure it out. What's important right now is that Zoe is healthy and strong, and that we're prepared for this next step.