We will always remember Ellie for her love for others, her creativity, sensitivity, and delight in life! Ellie's light has spread far and wide... may it continue to shine in our hearts.

Sunday, September 30, 2007

Another Day in a Different Paradise...

Yes, I know I'm weird... You know how much I've fallen in love with Monatana. The mountains, the trees, the nature (except the bees). But I have to admit - New York is wonderful too. I have felt so at home on this trip. We have a gorgeous view of buildings and terraces. At sunset, windows begin to light up with a golden glow. And I have always found the people to be so nice and helpful here. And, wonder of wonders, today I actually knew which direction was north! That NEVER happens to me. When people say "it's on the north-east corner..." I just stare blankly. I speak in "left" and "right". But not today! It was exhilarating. It will probably never happen again, but I don't care. I got to experience it once. That's all that matters.

Today we went to the Museum of Natural History. Mom, Gary, Ellie and I wandered around displays and soaked in all of the beauty and I couldn't help but marvel at the creativity of God. The most awe-inspiring exhibit was on sea creatures. There was a gigantic whale suspended from the ceiling. (I wish I could tell you how big it was, but I'm not a good judge of size. Hey, I got north and south today - that's enough for one day!) Gary pushed Ellie in a jogger stroller so that she wouldn't wear out. Unfortunately WE wore out! But it was a wonderful day. We found things from the movie "Night at the Museum" - dinasaurs, dum-dum, and such - and we even stopped to admire the cheetahs in honor of our little Ethan (aka Duma, the cheetah). All in all it was great just to be together! Ellie has been beside herself with joy to be with "Grandma" and "Papa" again.

Tomorrow the week of testing begins, but it's not a difficult day. Ellie will have her medi-port accessed for blood work and we will meet with her doctor. Then she will have a CT scan. That's it for the day. It should be a nice day of catching up with other families and medical personnel. I will keep you posted on the rest of the week...

As always, thanks for living this with us. Being back in this place brings so many memories to the surface, so I spent some time last night (ok, maybe it was half the night) re-reading many of the past entries, and then the comments. Your love and support continues to touch me, even as I look back. I do not want to forget the hard times during these times of rest because I have found that our deepest struggles were interlaced with God's greatest comfort. And His most frequently used tool was your words, and your hands, and your tears. Somehow "thank you" just doesn't seem like enough.

Saturday, September 29, 2007

Safe in NY...

We have arrived! We got in last night and met Mom and Gary at the airport - they had just flown in from Florida.

Today Ellie turned nine years old! Wow - I always took for granted that my children reached the next birthday. Now it feels like a gift... she made it to nine.

And a happy little girl she is. Papa and Grandma took us to the American Girl Place for brunch and shopping, of course. (We missed you Gerry!) We met a nice man on the airplane, and he called ahead to let the store know that we were coming. (Thank you Dave!) Ellie got the royal treatment! A personal shopper, Maria, helped Ellie with her selections, gave her some unexpected gifts, and made the whole experience unforgettable. I'm sorry that I don't have pictures. None of us had cameras, so I bought a disposable one at the store. Now I have to actually develop the pictures... what is that!? I have blocked that whole process out completely - I so love digital. Oh well...

Tests begin on Monday and continue through Thursday. It's a pretty easy schedule. They are the routine tests that Ellie gets every so often to determine the progress (hopefully lack-of-progress) of the cancer. All tests are spread out over four days, so no one day will be too full. Then Ellie can rest on Friday and we fly that evening. I will be sure to let you all know the resutls of the tests. Thank you so much for praying!

Thursday, September 27, 2007

The Lonliest Road

Just wanted to remind you all that the NB fathers who are biking across america are nearing the end of their journey! They will be in Virginia and Washington DC in the next couple of days. If there are any of you in those areas who want to be a part, the website gives directions for how to meet up with the group. They have had a long, but good journey and have been shown much hospitality by fire stations across America. They have also visited numerous children's hospitals and met other children suffering from NB. There is a link on the website to a blog that gives good information!

Here's the website again:

Please pray for these men for safety and please pray that the word continues to spread about NB and that funds will be raised for much-needed treatment. Thanks so much!

Sunday, September 23, 2007

Weather Pixie

This is where we are:
The WeatherPixie

This is where we were:
The WeatherPixie

This is where we are going:
(New York)
The WeatherPixie

Saturday, September 22, 2007

Ellie's Tour

After talking on the phone with "Aunt Cece" one day, Ellie decided to do a photo tour of our new home. She drug Reni all over the property that day and made her take pictures and videos. Reni was such a good sport, and Ellie was quite the little director. And so, I give you the edited version of Ellie's tour (you cannot even imagine how many pictures there were...).

The home of Mike and Reni Daniels:

(Front view)
Photo Sharing and Video Hosting at Photobucket

(Back view)
Photo Sharing and Video Hosting at Photobucket

This is Reni and Mike:

Photo Sharing and Video Hosting at Photobucket

Living with Mike and Reni are...

John's Grandma, Agnes (Reni and Loretta's mother)
Photo Sharing and Video Hosting at Photobucket

John's cousin, Lauren (the daughter of Melanie and Richard, in Connecticut - you remember Melanie who has helped us so many times over the past year...)
Photo Sharing and Video Hosting at Photobucket

And their adorable dog, Eliana (who is terrified of the camera, so this was the best photo they could get)
Photo Sharing and Video Hosting at Photobucket

The house from the inside:

The living room/dining room
Photo Sharing and Video Hosting at Photobucket

The view from the balcony

The family room downstairs
Photo Sharing and Video Hosting at Photobucket

The guestroom downstairs aka "our room" for the time being
Photo Sharing and Video Hosting at Photobucket

And this is the spot where I sit and type...
Photo Sharing and Video Hosting at Photobucket

Some of the outdoor highlights:

Photo Sharing and Video Hosting at Photobucket

Photo Sharing and Video Hosting at Photobucket

Picking plums
Photo Sharing and Video Hosting at Photobucket

And now for Loretta and her menagerie...

On the way to Loretta's house, we see the beautiful Dream!

And here is Jenny the burro (yes, I know she sounded bigger in my story, but it's still not an easy feat to push even a little burro!)
Photo Sharing and Video Hosting at Photobucket

This is Loretta and Sophie
Photo Sharing and Video Hosting at Photobucket

Ellie with sweet Sophie (left) and Josie the puppy (right)
Photo Sharing and Video Hosting at Photobucket

Ellie at Loretta's place with Teddy (left) and Luc (right). Unfortunately, Pippen is missing from the photo
Photo Sharing and Video Hosting at Photobucket

And now for the raccoons! They have all been rescued - from a fur farm, a zoo, and a wildlife center. They were part of Loretta's life before she moved to Montana, and now happily serve as "mascots" for Still Waters Photography's wildlife menagerie. They live in Loretta's house in large, comfy cages, complete with cat poles and nest boxes.

Ellie is talking with Ruby:
Photo Sharing and Video Hosting at Photobucket

Ellie and "Izzy" (Isabelle):
Photo Sharing and Video Hosting at Photobucket

This is "Gabby" (Gabrielle):
Photo Sharing and Video Hosting at Photobucket

This is the beautiful outdoor display cage for the raccoons, which is a fun place for them to bathe and be in the sunshine:
Photo Sharing and Video Hosting at Photobucket

I hope that you have enjoyed Ellie's little tour. As you can see, we are thouroughly enjoying the animals and all of God's beautiful creation! Thanks again for your love and prayers.

A quick prayer request - Ethan has a cold. Please pray that he gets over it quickly and doesn't pass it along to the others who will be coming with him out to Montana. Thanks so much!

Wednesday, September 19, 2007


Thank you for all of the Birthday wishes! You are all so sweet. I did have a wonderful birthday. Ellie "surprised" me with a hand made card - complete with a picture of a racoon and real peacock feathers (one that popped out when I opened the card because it was glued to an accordian folded paper. I told you that she had something creative up her sleeve.) There were lots of phone calls and beautiful cards during the day, and then the family took me out for a delicious birthday dinner. They also bought me a gorgeous pair of boots. No, not cowboy boots or snow boots. They were soft, dove gray, high heeled, knee high boots with three large brushed silver buttons at the top. You know, the kind of boots that I will have to invent an excuse to wear... my favorite kind. Some of you could care less about that, but others (Tricia) will completely understand! Also - it was my favorite kind of day - dark and drizzly. This morning we awoke to find snow on all of the mountain tops! All around, the day brought more wonderful memories to add to my much loved and oft-remembered stores. Thank you all!

In other news... Ellie's new weight (and we count it as valid when she keeps the same weight every morning for a week) is... 50 POUNDS!!! She is now eating at least 2,000 calories every day. Ellie and I will be leaving for NY on Friday, September 28 - the day before Ellie turns 9. We will be there for one week - returning Friday, October 5. Mom and Gary will meet us in NY and we will celebrate Ellie's birthday. We are so excited. Then Ellie will have all of the tests - CT scan, MIBG scan, urine test, blood tests, and bone marrows. She will also have her eyes checked. Since there is no sight in her left eye, we want to keep good track of the right one. We are nervous and hopeful about all of the tests. We would, of course, love to hear that things are better, but I would not be at all surprised, or disappointed to find that there is no change. We just really hope that there is not negative change. I will let you know how it goes!

One prayer request... if you are thinking of us, please pray that Ellie will remain healthy right now. As the weather is changing, sicknesses are starting to go around. Lauren has been sick, and has been such a good sport about staying in her room to keep from exposing the rest of us. But with so many people in the household, it is hard to keep things from passing around. Ellie and I have moved in to Loretta's house for a few days to try to help.

Also, the day that we leave - Sept. 28 - John, Ethan, Stan, Pat, Ginger, Russ and Maddie are leaving Florida to drive to Montana. They hope to arrive about the same time that we get back from NY. So travel safety is another big prayer request. Thanks so much!

Tuesday, September 18, 2007

Happy Birthday...

... to me! I'm 35 today. :-)

I was thinking last night about birthdays and marveling at how I've never grown out of the joy that my birthday brings. I always assumed that I would someday dread my birthday... getting a year older and such, but it hasn't happened yet. I think that I will be just as excited about 40 as I was at 30. This lead me to remembering past birthdays. Some stand out in my mind more than others, so if you will permit me a walk down memory lane...

Most of my younger birthdays have blurred together, but I do remember that I didn't like cake (I have since recovered from that silliness) and poor Mom had to try to find a creative solution for that! I also remember getting a life-sized doll that I had desperately wanted. I could fix her hair and pretend that she was a friend. But at night I would agonize over where to put her. I was afraid that I would wake up in the night and think someone was in the room and get scared to death. I thought of the closet or under the bed, but then I would KNOW that there was someone in the closet or under the bed... such a quandary.

I turned 12 just after my family arrived in Panama for the very first time. I had a party with all new friends and was entering junior high. Mom made the whole day so special! I believe that was the last birthday I had with my parents (until I was 21 - Mom was there for that one!). My brother and I stayed at the school during the year while our parents were in the tribe, and since mine is a September birthday, it always fell at the beginning of school.

On my 14th. birthday, Dad gave me a beautiful wooden jewelry box, lined with blue velvet, that he had made by hand. A carved wooden heart was the secret latch to opening it. I use it as a tea chest to this day.

We were on furlough for my 16th. birthday, but Mom and Dad were in Florida taking a computer course, so I spent the day with some wonderful friends in California. My Grandpa Jim bought me a sapphire necklace that year... ahhh sweet 16!

I had graduated from high school and was living with my Grandma Lois in California on my 18th. birthday. She took me to the Olive Garden in Reno (my first trip ever to that restaurant).

I was back in Panama before I turned 19, and by my 20th. birthday was living alone in a house that was bigger than any I have lived in since! That was a solitary day, but I still loved it. I made a pot of tea and climbed back into bed and opened a present from my parents. Four months later, my dad was kidnapped and I ended up in Florida... where I met John.

I got engaged on my 21st. birthday! John and I went ring shopping that morning and finally found the perfect set (I was just a little picky...) We had the jeweler place a diamond from John's grandfather's ring into the setting. I remember going out to eat for lunch and the server commenting over the way that John pulled my chair out for me. And do you know? 14 years later, he still pulls my chair out for me! Once we picked the ring back up, we met all of our family for dinner to show it off and celebrate. On the way home, at sunset, John took me up on the roof of the Mission and "officially" proposed. I have always been happy that the day went that way - there was no scary, awkward, surprise proposal (shudder) - one evening John told me that he wanted to spend the rest of his life with me... and I believed him. It was just that simple. And perfect. We were married well before I turned 22.

I was hugely pregnant with Ellie, and on bed-rest, for my 26th. birthday. All of the family gathered around my easy chair. My sweet in-laws gave me a Swarovski crystal pair of baby booties! Ginger had been shopping her heart out to bring my vision for Ellie's bedroom to life. Then we watched what turned out to be a very sad movie... sure, make the pregnant woman cry!

My thirtieth birthday was spectacular! I was pregnant with Ethan, but not yet at the gigantic and uncomfortable stage. I awoke that morning to be told by John that he had arranged a baby-sitter for Ellie (my mom, I think) and was taking the day off to be with me. He took me to the mall for a new outfit, then out to lunch. We came home to get ready for dinner - I knew that the family would be gathering, but that's all I knew. I had an elegant little black maternity dress that I'd been dying to wear, and as we stepped out of our front door, a long, white limo pulled up to the house. Grandma Jean, Grandpa Jim, Mom, Ellie, Stan, Pat, Ginger, and Russ were all inside! We went to a wonderful restaurant to eat. Ellie slept through the entire thing! It was an amazing birthday. I did, however, learn one important lesson about limos. Never sit sideways in a moving limo and open presents. I had to close my eyes for the remainder of the drive to make the car stop spinning and keep my supper in my stomach!

One of the most special things that I have done for my birthday in recent years is to go out on a "girl's night out" with 4 other friends and mom's (we have 13 children between us). We take turns celebrating each other's birthdays. It has always been special. Vickie, Kim, Tonya, and Kristi - I miss you guys!

Well... that brings us to present day... I am so happy to be in Montana for this birthday - I've not done that before, and I like new experiences. I do miss John - he's not missed any of the past 13 birthdays. Ellie has been whispering to people since yesterday, so I believe I'm in store for some wonderfully creative work of art! I just wanted to thank you all for being such a special part of this past year of my life. I will always remember being 34 as the most stressful (I hope), yet poignant year of my life! Thank you for choosing to live this journey with me.

Saturday, September 15, 2007

to the friends and family of Megan Welch...

This post is for those of you who know my friend, Megan Welch. Megan was scheduled to marry her fiance, Matthew on Saturday, Sept. 21. She and Matthew have decided to postpone the wedding. They are still engaged, but have decided to slow things down instead of getting married so soon. I'm posting it on the blog for those of you who have been invited to the reception on Saturday and may not have heard the news. Megan's family has been trying to get the word out, and they want to make sure that everyone finds out before Saturday. Since so many of the people who were planning to attend the reception read this blog, we wanted to use this opportunity to spread the word. Please pray for Megan and Matthew to have wisdom in the days to come. Thanks so much!

Thursday, September 13, 2007

An Ellie Ballet

Ellie still loves to dance! We could only get 30 second video clips, so we have captured this particular dance in three segments. It's the two verses and chorus of one song. Enjoy!

I know, I know... two entries in one night... it's a miracle!

Wednesday, September 12, 2007

The Loneliest Road...

I meant to get this out to you days ago... and just now realized that it has already begun! John wanted to go on this ride/fund-raiser with the other fathers, but due to our moving across country, was not able to. I have shared with you earlier about the 3F8 Monoclonal Antibody treatment that we went to NY in hopes of getting for Ellie. Well, there have been further advancements towards even better treatment for children with Neuroblastoma and the parents have been called upon to raise the funds to turn the possibility into a reality. Even if Ellie never receives this treatment, we are whole-heartedly behind it, as it provides much needed hope for the many children with NB. Another huge hope for this endeavor is to raise awareness in this country about NB, as it is one of the lesser-known childhood cancers. The following information explains "The Loneliest Road":

"On September 10th, 2007, five fathers will cycle 3700 miles across the United States, from Sacramento California to Washington DC. Their mission is to raise awareness and money for cutting edge treatments that can be used to fight an aggressive childhood cancer called neuroblastoma - a cancer that all of their children fight.

Neuroblastoma is very rare. Because it is rare, treatment options are limited and funding for these cutting edge treatments does not flow freely from large non-profit organizations. The funding for research and development of new therapies comes from parents and families like these, who are faced with limited options to save their children.

We ask that you join us and help raise the funds needed to save our kids. We can't do it without your help. We would like to invite you to follow our journey, to record the ups and downs, and to get the message out that we are willing to do anything to raise this money to help our daughters and sons. Travel with us on The Loneliest Road.

To learn more about the Loneliest Road campaign and make a donation of any size, please visit the following web site:


Please share this link with as many friend as possible so we can raise the money for new cures for all the children facing this deadly child hood cancer called Nueroblastoma."

Please take the time to check out the website - the stories of the five fathers and their children closely echo our own. These are faces that we have seen in the hospital and at the Ronald McDonald House... they are names that we know... and they are friends.

Thursday, September 06, 2007

Photos...at long last...

Over the weekend we had a wonderful day at the family's campground a couple of hours from home. The highlight for Ellie was getting to ride on the four wheeler with Uncle Dick!

Photo Sharing and Video Hosting at Photobucket

John's cousin Nick and his wife, Celena came to Montana for the week to celebrate their first wedding anniversary. We have had a fun time catching up and spending time together. We all went to Glacier National Park and took a hike up to a gorgeous spot where we could see a lake nestled in amongst the surrounding mountains... just beautiful!

Photo Sharing and Video Hosting at Photobucket

Photo Sharing and Video Hosting at Photobucket

We took a jogging stroller along and Nick pushed Ellie most of the way up and all of the way down the trail. She would get out and run around a bit, but it was nice to be able to shield her from the sun and keep her from expending too much energy.

Photo Sharing and Video Hosting at Photobucket

Photo Sharing and Video Hosting at Photobucket

And what's an adventure without wildlife?

Photo Sharing and Video Hosting at Photobucket

And just to prove that I was actually there... (this picture was taken for John - Ellie's telling him "I love you" with both hands)

Photo Sharing and Video Hosting at Photobucket

After we walked back down the mountain, we drove down to the exact spot where Nick and Celena were married a year ago. John, Ellie, and Ethan were all in the wedding. It was just before Ellie was diagnosed and she had been suffering with back pain on our whole trip. We had yet to discover why. This is the exact spot where they were married. You can barely see Ellie in this picture, but she is squatting at the side of the lake, playing in the water. Needless to say, she felt MUCH better on this visit to the lake!

Photo Sharing and Video Hosting at Photobucket

I hope that you have enjoyed the overview of our activities of late. Yes, I did enjoy my time in the fresh air, but I came away with a nasty sunburn. I am slowly, but surely making my peace with nature...

Love you all!

Wednesday, September 05, 2007

Sheepish Apology...


I am so sorry I've not posted in so very long. A number of days ago I realized how long it's been and then I've had the busiest week that I've had since being here. Every night I think that I'm going to get on and post and then I fall into bed exhausted. I'm so sorry, and I've not meant for anyone to worry.

Ellie is doing well. Some days she has even hit the 50 pound mark, but she's a consistent 49. She's also grown an inch since our last check. Her counts are going up and her energy and coloring are good. I finally have some pictures to share, so I'll get on tomorrow and post those. Her hair is almost an inch long all over now!

John and Ethan are still in Florida. We miss them so much. Ethan got on the phone with me the other day and said "I want you, Mommy. I think I'm going to cry for five nights." I love how he's planning in time to be sad. The boy thinks ahead. He's doing well and enjoying the fact that he's with his daddy every day. But he gets very sad every time John leaves him for work or any other reason. It's been a long year for the little guy. We can't wait to be all together again.

I will post more tomorrow, but I just couldn't go to bed one more night without assuring you all that we are still alive and well. I really will try to do better. I think that for a while it was nice to pretend that all was "normal" again and sort of forget that the past year even happened. I didn't even seem to have it in me to get on the computer at all, even to check email. The days have sort of blurred together. Anyway... I so appreciate that you all still care and are praying and I will get you pictures and more descriptions of our life and routine with Ellie's treatment and such.

Thank you so much for your patience with me during this time. I can never forget how you got us through such hard times, and I will not stop keeping you up on what happens next... even if I have a few long delays. Good night for now - I'll check back in tomorrow!