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.

Friday, June 29, 2007

Hair Photos

These are not the best pictures, but will give you an idea of Ellie's hair growth. It seems to be longer every day!

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Thursday, June 28, 2007

My heart is "making noise"

I'm sorry for the lapse in posting. We are alive... I am feeling better and I guess I've just been busier than I was. Now that I'm feeling better physically, some of the emotions that I've put on the back burner are starting to surface. It's o.k., just a little overwhelming. I spent the first couple of weeks feeling mostly numb. Now the numbness is wearing off and I don't think I like it! You know the feeling you get when your foot falls asleep. That's not so bad until feeling returns - oh the pain! Sometimes it feels better to whack it a bit, but I might get some funny looks if I start beating my head against the wall. So for now I ride out the pain cycle and pray. (Rabbit trail: When Ellie was a toddler she woke up from a nap and realized that her hands were asleep. She had never experiened this before and I came in to find her staring at her hands in wonder. She looked up at me with wide eyes and said "Mommy, my hands are making noise.")

Ellie is doing o.k. Her counts are finally a little better, but not overly high. It is possible for her counts to struggle for some time after radiation, so it's no big surprise. Her appetite has lagged a little over the past couple of days, but so far her weight is a stable 45 pounds.

I just wanted to check in. I'll get back to you again... hopefully soon. Thanks so much for all of your sweet comments over this past week. We love you all.

Saturday, June 23, 2007

I am nature girl...

... hear me roar!

So yesterday I'm told that everyone's going on an outing to a river to collect rocks for Ellie and hang out in the fresh air. (We try to take Ellie on carefully selected outings. We only take her places with limited human contact right now as her white count has dropped and her succeptibility to infection is greatly increased. We also must be very careful about sun exposure, so on this particular outing we made sure she was continually in the shade or covered by hats and clothing.) I was given the option to stay home alone (which I love doing) or go along. No pressure. Really. "We'll make sure that there's shade for you, Grandma, and Ellie and we can set up an umbrella for you to sit under and relax" they say. (It does not escape my attention that I am in the same catagory as an elderly woman and a small girl with cancer.) Ok, that sounds pretty benign. I can do this. After all, I am tougher than I look. I grew up in the jungles of Central America and can balance in a moving canoe - standing up - for pete's sake. So I go.

We arrive at the banks of a gorgeous river with rock-strewn banks. There was no shade - anywhere! After careful positioning of the trucks and umbrella for shade, we set up. The kids and dogs had a blast and I enjoyed sorting rocks. Reni, Grandma, Lauren and I stayed with the kids while John and Loretta had some fun walking a trail around the bend of the river. Eventually the kids got tired and wet and muddy, so we cleaned up, packed up and readied to go.

Now this is the part in the story where what I was wearing plays a part. It was a hot day, so I figure I'll be the most comfortable in a tank top and a breezy cotton skirt. (I don't wear shorts... ever.) By the time we were ready to leave I noticed that my arms and shoulders were very sunburned (mostly from riding in the truck) not to mention that I had just wretsled two grouchy, dirty children into dry clothes. I was tired and hot and wondering why I had agreed to come. John had just rinsed my feet off and I was sitting in the truck waiting for the final load-up when I heard a buzzing sound and felt a sharp sting on my upper thigh. Oh dear - bee up the skirt! I hop out of the truck and start jumping and flapping my skirt - I'm sure, all the while hollaring something very entertaining. Satisfied, I finally hop back into the front of the truck and let John rinse my feet... again. I hear a buzzing sound near the seat of the truck, so I quickly move over to the passenger side. It follows me. I don't see a bee. But there's something wiggling in my skirt. BEE UP THE SKIRT!! I throw open the door and start flapping the skirt again. Ugh. Like I said... I don't like getting nature on me.

So... was it worth it? Take a look at the following pictures. Oh yeah, it was worth it.

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(Aunt Sharon - I will definitely get a movie clip on of Ellie and Ethan! I tried to take some the other night but I don't think they turned out well. I'll get a nice one. Love you!)

Friday, June 22, 2007

Gary and David Hamm...

... This one's for you!

Since my last post was rather girlie, I thought I'd post something that would be of some interest to the men.

Seeing deer on the property here is a daily occurrence, but yesterday John went into the field and crawled through the grass with his camera to get this. This buck was one of 5 bucks and 4 doe. This guy was not happy that John was so close!

Thursday, June 21, 2007

Shameless Bragging

Well, lest you think that I've done nothing on my many days of rest, I thought I'd prove that I've been a busy bee... at least part of the time. When we were still in NY I was looking for head scarves for Ellie. Her winter hats are too hot, but Ellie still likes to cover her head in public. So... I went off in search of some cute and cool little head scarves - preferably fitted. I finally found a gorgeous one - silk and perfectly tucked in all the right places. It was $48 for ONE scarf! (Even if I could have found a way to justify spending that - and I couldn't - there's no way that an 8 year old can be trusted that much.) I continued my search to no avail. I finally found some inexpensive cotton handkerchiefs at a little store in the mall. So, for the last few days I've been sewing head scarves for Ellie. I got four different colors and I only needed half of one to make the scarf. All that extra fabric... what's a girl to do? I get bored easily, so making four identical scarves was just out of the question. (It becomes like doing housework - my feeling on that is that if I've done it once I should never have to do it again. Been there, done that!) I just finished that last one this morning and ironed them all up. Then I made Ellie try them all on and do a little photo shoot. I thought you might like to see the results. (Thank you Reni for the work you did putting the pictures into such pretty collages!) I'm so pleased with how they turned out, and Ellie looks like such a model. She makes bald look stylish! (Actually, she's starting to get some hair - I'll get a picture of that soon and show you. It's so exciting!)

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Monday, June 18, 2007

Random thoughts...

Well, I can't say that I'm feeling much better, but it has been nice to be able to sit back and let others take care of the kids - especially Ellie. It's been a good break for me to not have to even do all of the thinking about what to feed her, etc. So feeling poorly has it's perks. :-) Bless Loretta's heart, she's been doing enough thinking and working for three people. Reni has been cooking and Mike's been doing lots of cleanup. (Reni and Mike are John's aunt and uncle - John's dad is Loretta and Reni's brother.) John's grandma has been faithfully folding any and all laundry that I take out of the dryer - and there've been many loads... John's cousin Lauren also lives here and when she's not at work she helps feed and entertain Ethan and run errands. So as you can see I've been rather pampered these days! (And you'll have to forgive the small twinge of self-satisfaction that I get when I see how many people it takes to keep our little family going - I KNEW there was a reason why I feel so tired when I'm home alone with the kids!) There is some other family in the area that we can't wait to see. I keep praying that we can all just get over this sickness so we can get down to the serious business of having FUN!!

John has been helping with the kids - often getting up with Ethan so that I can sleep in with Ellie. He has also been running around planning forays into the mountains. He's taken some drives around to look at scenery on the days that have been too soggy to do much hiking. When John's eyes roam to the mountains I can almost see the same look that a horse gets when you dangle a carrot just out of his reach. My sweet husband is absolutely driven to explore.

And speaking of husbands... just the other day John and I went out for lunch. I didn't feel great, but it was so nice just to be out together. We sat in a booth of the restaurant and simply enjoyed each other's company. It was a great big booth, and as is his way, John sat down beside me insead of across from me. As I am left-handed and he is right, we are able to eat an entire meal holding hands or with his arm around me. John commented that he almost felt guilty that given all of the stress and strain of the past year, we could be so happy. And that's the plain and beautiful truth of it - God has just blessed us with such joy in each other. It's funny because we really don't have a lot in common as far as interests and activities, but we love to enjoy a meal together and talk a while. Sure, there is still the daily work of a relationship - choosing to be kind to each other in the little things; him choosing to act in a loving way towards me; and me choosing to respect him... But when it all comes down to it, we truly feel blessed by God in that the joy comes easily. I still have a vivid memory of the first time we came home from the hospital with Ellie last October. She had been in the hospital for a month, and I had slept at the hospital for the entire time. Finally we were home and the kids were tucked into their beds. Once we were settled into our bed for the night, I started crying and as John held me, I admitted that I felt like I should be happy, but that somehow we would never be able to be happy again. Feeling joy at a time when life as we knew it was unravelling somehow just seemed wrong. And then something wonderful started to happen. The little joyful moments over the months have begun to string together in such a way that joy has become second nature...

And now on to pictures!

Back in New York:
Michael and Kathy in my favorite little French restaurant that's close to the hospital.
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Michael and our little buddy:
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In Montana:
The gorgeous view from Mike and Reni's home.
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The view of Bigfork and Flathead Lake from Jewel Basin.
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A few of the many sweet moments since our arrival in Montana:
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And so... goodnight dear family and friends. Even in our lovely time of rest and recharge we are thankful for your love and prayers. You are never far from my thoughts.

Sunday, June 17, 2007

Happy Father's Day

Sorry that I haven't been posting. I've been miserable with this cold. Thankfully Ellie, while still feeling the effects of this cold, seems to have pretty good energy and not feel too badly. (Loretta has been faithfully keeping Ellie eating and drinking, and despite the virus Ellie has already started gaining weight!) Ethan is still coughing and has some symptoms, but has plenty of energy and seems to be on the mend. John's cold never did develop! I, on the other hand, am not faring so well. I guess I shouldn't be surprised. God has kept me healthy for a whole year - which is a complete miracle. The last time I was sick was last summer after returning from a trip to Panama. I tend to get sick after times of great emotion, and during that trip many emotions and memories from my childhood - particularly of my dad - came flooding back. So... I suppose I should batten down the hatches and prepare myself for a doosey of a virus this time! I have nearly lost my voice. I alternate between a hoarse synthesized voice and a deep, gravely man-voice. This would be funny if I weren't so focused on the elephant that's sitting on my chest and trying to keep my heavy head from falling off my shoulders. I'm done whining for now... I think I'll go lie down...

I hope that you are all having a wonderful Father's Day! I am particularly thankful for the fathers in my life. Stan and Gary have added such dimension to my life in very special ways. I love you both so much! Thank you for being there for me.

Thursday, June 14, 2007

Sick...sick...sick...

Ethan is on the road to recovery, but I was the next in line for the nasty bug. Then yesterday Ellie started feeling poorly. She had a bad night with a sore throat, but feels some better this morning. We are monitoring her closely, but for now she seems like she's taking it like a normal cold. Also in the middle of the night when we were taking care of Ellie, John admitted that his throat was hurting. And so it goes. I just wanted to get a quick update out so that you will all be praying that Ellie can get through this quickly and easily. I'm off to rest my stuffy head...

Lots of love!

Tuesday, June 12, 2007

Safely in Montana!

We have arrived! It is nice to finally be here after weeks of dreaming and planning. (And truly, the dreaming began long before that.) We are so happy to be here.

But SOOOOO tired! Michael and Kathy and Ethan came to NY on Thursday. It was wonderful to see them and love all over Ethan again, but then we had to start packing and preparing to leave. In the midst of that chaos, Ethan came down with a bad cold. We are hoping that Ellie doesn't come down with it. Michael and Kathy are back in Florida and now they have it so, time will tell... I keep thinking I'm coming down with it, but so far nothing has happened. I'm exhausted from all of the packing and traveling. It was really hard to pack up months worth of stuff in the Ronald McDonald room to send to storage, and then figure out what we would need for a whole month in Montana. I love to unpack, but I'm terrible at packing. (There were a couple of times when I would have liked to send and S.O.S. out to my mom!) We had to be at the airport at 5:00 a.m. yesterday (after getting very little sleep the night before - John never even went to bed). I was dreading the trip with Ellie and a sick Ethan but I was pleasantly surprised. The kids mostly slept on the first flight, which was the longest leg. There was enough time at our layover in Salt Lake City to change the kids (they were still in P.J.s) and eat some lunch and then it was a short hop to Kalispell, MT. All in all, it was rather painless.

We had a good night sleep on VERY comfy beds (such a luxury) and are enjoying the gorgeous views and fresh air. The views from this house are unbelievable. And the best part is that I can see all of the nature from indoors without actually getting any of it on me. I know, I'm such a princess. (You may stop laughing now, Tricia.) Hey, I might actually step out onto the veranda and feel the wind on my face from time to time. Seriously though, it is beautiful enough and the weather is so mild and nice that I really am loving it. And I'm sure the kids will drag me out a time or two for a hike... I'll make sure to take picture so I can prove it to you IF it happens!

Thanks so much for all of your prayers. Sorry I haven't been posting much. Now that we are out of the frantic pace I hope to post more often. I hope that you are all having a great Tuesday. We sure are!

Thursday, June 07, 2007

Ellie goes to PROM

I'm so sorry it's been so long since my last update. We've had a busy week, but mostly good. Ellie has experienced some leg pain through radiation, but it has been relatively minor. It's actually on the backs of her legs - in her upper calves. The radiation oncologist believes that there is some inflammation of her tendons. Her last treatments are tomorrow... so almost done - yeah!

I finally have some pictures for you.

We went to the Metropolitan Museum of Art over the weekend. It was wonderful! Ellie loved the Egyptian exhibit, but I completely enjoyed the art. We spent more time in the modern art section (a personal favorite of mine) but we had to take a little time to peruse the Monets. I had no idea "Waterlilies" was so large and the colors were much more vibrant in person than in any books or posters, etc. that I had ever seen. John got me in the picture so that you could see how big it was!

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After the museum, we went to a little Alice and Wonderland tea room for dessert and tea. Ellie went into complete sugar shock and proceeded to bounce off the walls before we took pity on the people and left. This picture caught one of the many faces she was making!

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And last, but not least... PROM! We had so much fun. Ellie had her makeup done and picked out jewelry and a purse in the playroom. For weeks before, there were racks of dresses out in the playroom for ladies and girls to pick from. And - we get to keep our dresses! They were all donated by various shops. For those of you who know about such things, my dress is BCBG Max Azaria!

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This is Ellie's doctor: Dr. Kushner
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This afternoon Michael, Kathy and Ethan arrive!! We are SO excited. It is finally beginning to sink in that we are leaving. We will be able to wrap ourselves around Ethan for a whole month and Ellie will have all the rest and nutrition that she needs. Ahhh.... I can feel all of the little knots up and down my back ease up - one by one just at the thought! And we can't wait to see Michael and Kathy. It has been so long.

Thanks for your patience with me in my sporadic posting. I'll try to get pictures of the next couple days out as soon as possible! We love you.