First off treatment scans

On Friday we went to Portland to have Zoe's first off treatment scans. When we consulted with Dr. Liebch, he told us that what we need to hope for is "tumor control". I am excited to announce that Zoe has had no regrowth of the remaining tumor, so as of yet we have achieved tumor control!!!!

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