Thursday, September 13, 2012

Oh what amazing, fabulous news!!! Autumn is going to have her port removed tomorrow!! I can hardly believe it, a great ending, a good beginning to a new life, closure...all of these things and more!!! We will be driving down at about 6am...please have her in your thoughts and prayers. It is surgery, but fairly routine and quite common.

Wednesday, August 22, 2012

Autumn is about to begin Kinder tomorrow! What an incredible day, how much fun she will have, and how happy I am that she has made it here!!! We had a clear scan a week ago, her third one! This means that we now are able to schedule her port removal...hooray!!! She asked if that meant we were "done with everything, no more shots or anything??". I had to explain that we will, for a long time, have to visit the hospital just to make sure everything was alright. She was a little bummed, but was so happy that it isn't very often!

Wednesday, August 8, 2012

Headed to SB today for a routine CT scan. Invariably they make me nervous as hell, but I expect only fabulous results, she is doing so well, she is one amazing little girl!!!

Tuesday, June 5, 2012

"Mommy, these are my tired eyes" said Autumn this morning, peeling herself off of the warm cozy bed. "Oh sweetie, they are tired indeed, and so are mine!". I cannot believe how we have just been going and going this past week! Last night at the pool where a few famililes had gathered, there seemed to be a concensus that the amusement park EVERY day you are here may just be a little too much. I hadn't realized just how much there was to DO here in Orlando, especially for kids. Each park can easily be seen over a 2-3 day span and we are trying to see 7 of them in 5 days...yikes! Today is our last at Sea World, so although I am happy to visit, I am thankful for an easy morning tomorrow before we head off on the plane.

Monday, June 4, 2012

We headed off to Universal Studios this morning...another really long day, but very fun and very VERY FULL!

The girls loved Harry Potter even though they (nor I) know nothing of the movie or books! We decided our favorite ride, hands down was the Hulk, a super fast roller coaster that made spins, turns and twists better than any other! Autumn was too little for it as was one other little boy in our group, but she had NO interest in going anyway!

We managed to return in time to swim, amazing anyone had any energy for it! We met two Irish couples with whom we spent the whole day. There were thirteen of us in total, the kids had a blast!

Friday, June 1, 2012

Another crazy day! We had a great breakfast again at the Gingerbread House followed by a stop at the ice cream shoppe, then hoppped on the bus to Disney's Hollywood Adventure! It was a lot like Universal Studios with Toy Story being the highlight of the day. There were not a lot of rides, but we were able to see an "Ariel" and "Beauty and the Beast" show. Since it rained the majority of the day, the turn out was a lot less than usual, so very small crowds, that was a nice surprise! The girls took a class in how to animate, they all drew Jiminy Cricket, Autumn's was adorable! She was so proud of herself that she went up to the teacher to show her just how well she had done. :) The teacher then encouraged her by giving her some special illustrator pencils and one of her own drawings, Autumn was so thrilled!

The Disney theme parks are particularly wonderful in assisting youngsters who are part of the Make a Wish Foundation. We were able to "cut the line" as Autumn referred to it in almost every ride, photo opportunity and show, it was fabulous!

When we came back, Sage had a terrible headache, perhaps from lack of water. She fell asleep early, good for her! Autumn, Lindsey and I swam for a bit then headed home to eat and sleep ourselves!

Tomorrow we are off to see the animals!

We have a FULL schedule, one they plan in advance. We can change anything we wish, but it all looks great!

Thursday - Disney World - Main Theme Park
Friday - Disney World - Hollywood Studios
Saturday - Disney World - Animal Kingdom/Epcot
Sunday - Universal Studios
Monday - Universal Studios
Tuesday - Sea World

Plus there is a ton to do here in the will be anything but dull for the next week!!

Thursday, May 31, 2012

This morning we slept until 9am! Of course that sounds late, but we went to bed at midnight and it's all relative since back in California midnight is only 9pm...

This morning, we made it to breakfast, but barely! All the volunteers serve each family breakfast and dinner everyday so no one really has to cook even though each house has a full kitchen. This place is full of families who have had to deal with some sort of life-threatening illness to one of their children and because of that one can feel a sense of welcome from one another. As you move around the grounds, it's almost as if you can feel each family trying to sort out eachother's stories or situations. Some are a lot more obvious than others. There are a few families like ours who have children who have suffered the woes of cancer. There are others with children in wheelchairs and then others who may have undetectable illnesses. I wonder if that makes it any harder to endure your own situation, if others cannot really "see" what it is that you are going through. It is a type of ubiquitious feeling of communal curiosity that pervades the village.

We caught the 10am shuttle to Disney World and had a blast! We JUST returned about an hour ago, the kids are all asleep...SOUND anyone would imagine after a crazy day with princesses, rides and fun!!

We had a fun pass that allowed us to move to the front of the line for everything! Oh how the girls marvelled in their ability to just walk right up to the front of the line, special treatment indeed! Autumn preferred the smaller rides of Fantasyland while the big girls loved TOmorrowland, so we made an effort to see it all, and that we did!

We awoke at 2:45 yesterday morning to wait for our luxurious limo style shuttle. However difficult that was, we have had the best day with the girls being treated like princesses!

We slept most of the way, but we also watched the Muppets movie and drank apple cider out of wine glasses :)

We arrived at the airport about 2 hours early and headed towards our gate with Virgin Atlantic with hardly an incident. While there we happened to see a friend of Uncle Adam's, what a small world even in LA!

If anyone has not had the pleasure of taking a Virgin Atlantic flight, I highly recommend it. Each seat has it's own television, the staff is quite friendly and the food you order isn't even half bad. The tickets are often cheaper too, what a deal!

The house staying in is beautiful, it is one of maybe 100 2-bedroom homes in the "Give Kids the World" village, all of which appear very comfortable. It amazes me how much money it must have taken just to build this place, let alone maintain it. It has a relaxed and inviting feeling and with the moist, humid temperature and the warm, friendly community, it reminds me so much of Lakeside Ohio, a place my brother and I spent many of our childhood summers.

Wednesday, May 23, 2012

"Mommy, do I look like a boy? I just don't look like Autumn, my hair used to be longer." Autumn protested this evening after taking a shower this evening and visualizing her old self in the mirror. Oh it must be so frustrating that life just cannot return to "normal"...whatever that is! I told her what a beautiful princess she is!! I reminded her that she has gone through a lot in her little life, I can only imagine what she must think of on a daily basis. We are excited about our celebration tomorrow and our trip planned for next week! The girls will have a blast and Autumn will have the opportunity to be around children just like her, perhaps that can bring some comfort to her.

Friday, May 18, 2012

Autumn is set to have a little fiesta in celebration of her vacation to Orlando, Florida!! The wonderful couple who has helped grant Autumn her wish through the Make-A-Wish Foundation is going to have an ice cream party to celebrate this coming Thursday at Doc Burnstein's. How FUN!!!!

Friday, May 11, 2012

A very brave Nanie and Grandpa are taking the girls to Arizona today!! I have to give a final exam in my saturday bio class and could not make the first leg of the journey with them. I will fly tomorrow directly after giving the exam, flying alone is something I haven't done in such a long time! The girls seemed to be in a great mood today, so happy and sweet! I hope that lasts for the majority of the trip, it's a LONG time to spend in the car! Nanie and Grandpa...I love you guys, thank you!!!

Wednesday, May 2, 2012

WE HAD A CLEAR SCAN!!!!! Oh what a beautiful day is was on Monday! Autumn had a chest x-ray and an abdominal ultrasound that were both clear! Life is good! :)

Wednesday, April 25, 2012

Autumn looked so beautiful and sweet as she began to fall into a deep sleep tonight. She hugged both her Fluffy and newly acquired Fluffina as she closed her eyes and relaxed her little body. It has been so wonderful to see such a happy, healthy little girl these past three months. Sometimes last year really does feel like a dream...

Saturday, April 21, 2012

"Mom, it's been like 2 years since I've been here!", Autumn commented yesterday as we walked through the halls of Sierra on our way to visit our good friend Hillary. "Yes sweetie, it's been awhile since we've been here" I say with a smile on my face.

It felt a bit like college, a place we know so intimately for 4 years (or 5 or 7...)then we leave and it's almost like it never existed. After being somewhere and living a particular lifestyle for so long, it seems improbable that someday you may live a different lifestyle. That is just how it felt yesterday when we were in the hospital.

Hillary, a nurse's assistant has decided to return to school and study to become a pediatric nurse, the perfect career for her! She will be moving to Las Vegas this coming week and although we are going to miss her terribly, we make an annual trip to Vegas during which we will make a visit. :) Good luck Hillary!

Autumn's hair is growing everyday, it is wonderful, soft, perfect.

She has an ultrasound scheduled for Monday the 30th, something we will have to do about every 6 weeks or so for another year. She will have labs drawn as well until her port is removed, which may be sooner than later.

To the year 2012, what a great one it has been so far!!

Monday, April 9, 2012

The Bean

Autumn in the kitchen of a U-505 German Sub.

We are here in Chicago visiting my Auntie Janet and Uncle Bob. There is so much to see here, nothing at all like Grover Beach :) The girls have such fun people watching and asking all sorts of questions about everything they see.

Today we spent the greater part of the day at the Museum of Science and Industry followed by a trip to Millennium Park. We've been here enough times now that all the girls can decide where they want to go, things they remember from past trips.

Autumn was unable to go with us last year, so it's even more fun having her here with us! The girls have matured so much in the past year and it's been reflected in the manner in which they conduct themselves just about everywhere. Sage and Lindsey have found a love of reading, they push each other, it's something new and rewarding to witness! Janie Pie took them on a trip to the library today where they each checked out 10+ books. They have been reading ever since!
"Ewwww, who has smelly feet??" cries Autumn in the living room this evening. "Um, it's me" responds Lindsey, "my feet always smell after I wear those black shoes". A bit of me is relieved to hear this banter. Life is somewhat normal, it has been for some time now and the thought of returning to anything else scares the shit out of me. In about a week, we'll have another scan, just an ultrasound this time, to make sure that everything looks just as great as it has felt. I know it is impossible to feel anything different right now, this is how life will be but it beats the alternative, so I'm game.

Sunday, April 8, 2012

What a glorious few months we have had. In the past three months, we have been to Cottage just ONCE for her scan...what a relief!

Almost two years ago, we had planned a family vacation to Costa Rica. For obvious reasons we had to cancel our original date and when I rescheduled, it wasn't far enough ahead to make it work even though I had added 2 extra months to the time frame. :( FINALLY, after the second reschedule, we made our way!! It was amazing, beautiful, not-quite as cheap as we had hoped, but nonetheless amazing. The girls used as much Spanish as they could and we had a blast zip-lining, climbing volcanoes and playing on the beach!

The hardest part for Autumn were people's comments. Almost EVERYWHERE we went, people assumed she was a "varón"...a boy. It made sense, since her hair is beginning to regrow, she has the same haircut as her dad, so why wouldn't anyone think differently? She grew tired of that assumption and was visibly embarrassed about it at times. It was a small part of her overall joy throughout the trip, and surely it will make her stronger, but I'm not sure she needs more of that! :)

Sunday, March 18, 2012

Autumn is doing really REALLY well, a great weekend!!! So excited about our upcoming trips, life is good!!!!

Wednesday, March 14, 2012

A piece of mail was sitting on my desk this morning from the Make-A-Wish Foundation. The news at the top of the letter read, “Autumn’s wish has been granted!” and I had a huge smile on my face. The organization has given the whole family a week trip to Orlando’s “Give Kids the World” Village which includes Disney World, a water park, a swimming pool and lots of ice cream. Although it wasn’t really what Autumn had originally desired, it will most likely be the most amazing kid experience of a lifetime! At any rate, we are booked for the end of May!!

Friday, March 9, 2012

It still feels so strange to be in a coffee shop, working on my computer, teaching not in a hospital, not in the past. I cannot believe we have been in Santa Barbara only one time in the past two months, how wonderful that feels!

We are all headed to Costa Rica in exactly two weeks!!! I can hardly believe it, I had originally planned this trip almost 2 years ago. I have no idea what we will do when we are there, but the possibilities are endless...agghhh...peace and relaxation and fun!

Thursday, March 8, 2012

“Mom, I don’t really want to be big. I just want to grow to about 16, be as big as sixteen because that when you can drive, right? That’s all I really want to be”. Autumn spent the earlier part of today contemplating age, most likely due to my birthday.  I swear 38 must sound soooo old to a kid. I distinctly remember my mom turning 35 (I happened to find a mug in a local store with 35 candles on it and was overjoyed!) and thinking that was ancient! How humble age makes us, we think we know so much when we are so young, but we get older and realize we never really knew anything at all! How can that be?

Grandpa John has a great story from his youth. He was about 17, working in a restaurant somewhere in Ohio. Life was about to begin for John, but not so much for the “old” guy who worked alongside him. One bright day, he remembers the older guy telling John a story of age and intelligence. He said to John, “You’re only 17, is that so? You think you know everything, don’t you? All that means is that you are only going 17 miles an hour.” “I’m going 70 miles an hour, don’t forget it!!!” Of course when John was 17 he thought that was a pile of crap, a bunch of shit given to him by a bitter old man stuck working in a restaurant his whole life. But after 70 years, the story remains and the restaurant worker was a whole lot smarter than anyone knew. Only age can do that to you and it’s unfortunate that we don’t give the old guys and gals in our society a break once in awhile to stop and remember their wisdom.

So onto the celebration of birthdays…and to moving 38 miles an hour!

Sunday, March 4, 2012

Every situation can be seen in a positive light or a negative one, the glass can be half full or half empty, clichés abound in the area of pessimism and optimism. Which is it for each of us? How do we really choose to live our lives? What REALLY matters? I feel like I have learned so much from Autumn, from her life experience and how she has reacted to some of the most difficult aspects of cancer. I have also learned so much from how others have treated her and how there has been so much love and support from strangers. It makes me wonderfully happy to think that we all care that much about each other, even when we don’t often show it. It often takes tragedy to bring out the best in us.

There is a concept known as “survivor guilt” which exists on another level of emotions. After Lexi’s death, I realized how real this concept is for those who did not have to grieve that awful reality. There is a group forming for some of the parents in this situation to talk to one another along with a social worker who is trained and can help guide each family along this new path. It seems as though once you are “on the other side”, you would feel fabulous all the time, but I have to admit, there is a strange sensation that lingers, however happy I am. I am curious to know how others feel.

We have a short time here. One can consider himself lucky to see his grandkids, let alone the following generation. “How old are those people?” Autumn asked me this morning, while gazing at a photo of a young couple hanging on the wall above my computer. “Well, those two people aren’t alive anymore, they would be about 150 years old today and no one lives that long.” I said. “Really?!? No one, not anyone on this planet lives that long?” she asked, almost frustrated. As I took a long hard look at the picture of my great-great-grandparents, I thought briefly about the life they led in Turkey so many years ago. What was that like? What did they think of all the generations that would someday proceed them? Maybe they were just happy and in love, I hope so anyway.

As it turns out, supercentenarians are not very common, but if you ever see a photo of one, they always appear to be smiling! The oldest woman may be a French lady born 122 years ago, hard to imagine what she has seen in her lifetime. If one could be offered a full life, a healthy life, then we may all chose this length because why not! Imagine what someone today would see between now and 2112…lots of possibilities!

Thursday, March 1, 2012

“When I was 3 ½ I had a dream about your daddy. He was flying with his eyes closed.” Autumn casually mentioned this just after we dropped off Sage and Lindsey at school this morning. Earlier, we had been discussing dying for some reason and it’s as though it jogged a memory of hers, a memory I had never heard of before. I couldn’t help but think it was the energy of my father somehow finding its way thorough the only channel it could, through that of a child’s mind. Kids have a way of opening up to the unknown world and accepting it in a way that adults cannot. I love being with Autumn because she has a way about her that is remarkable, she reminds me to slow down which has never been my forte.

Purple Cake Day was being celebrated today at Farmer’s and we decided to make our way down there to join the crowd. With Sage’s help, Autumn dressed up in purple from head to toe and off we went. Little did we know that all of her nurses from Sierra were there at the booth, face painting and selling goodies to help those less fortunate in Nepal. I love how people can make a difference when they are in the mood to do so. This organization sounds wonderful and we were happy to be a part of it!

Wednesday, February 29, 2012

“Mom, I’m kind of learning how to rap, can I take a rap class?” How incredibly cute that would be to see little Autumn on stage rapping! She could tell the world about her life and everything she’s survived last year, maybe her sisters can help her write a little something…hmm…

Sunday, February 26, 2012

Her sweet, soft, perfect head is sprouting the most luscious carpet of fluffy hair! At first it seems quite dark, but as the days pass and the sun shines, each strand slowly lightens. I am sure it won’t be as blonde as it once was, but I can hardly wait to see what it will be.

Tuesday, February 21, 2012

Oh, what a wonderful, WONDERFUL day!!! As many of you are already aware, Autumn had a CLEAR SCAN today, it was such a relief to hear. We had her end-of-chemo party in the clinic today with pizza and a beautiful chocolate cake!

Monday, February 20, 2012

We are having a great time in LA with Uncle Adam, Auntie Alma and baby Camy! Headed to the children's museum today, so fun for all the kids. We are planning to wake up early tomorrow, at about 5 or so to head to SB for Autumn's first post-chemo scan. Please everyone keep her in your thoughts and prayers!!!

Saturday, February 18, 2012

Lexi's funeral is today at 11, I am obsessed with the thought of her.

Thursday, February 16, 2012

Today was one of the roughtest I have encountered in a long time. The social worker at the hospital called today to let me know that a very dear little friend of Autumn's had passed, she was only 3 years old. I could hardly breathe; I don't think I have ever cried so hard in my entire life. I cried for this sweet, innocent little girl, I cried for Autumn, I cried for the woman I read about in the paper today who is struggling with her third recurrence of cancer. Life can be so unfair.

I can hardly believe it, she was one of the most amazing little girls I have ever met. Where do I begin to describe who she was? She had endured so very much at such an incredibly young age, but like Autumn, persevered through it all with boundless energy and often a huge smile. She and Autumn had shared the same hospital room a few months ago. I did know then that she was struggling, her battle was still in motion, but she appeared so incredibly healthy, so strong that I felt in my heart of hearts there was nothing to worry about, I felt like she was going to be ok. I cannot imagine her mom, that feeling has overwhelmed me the entire day and I just cannot fathom it. The social worker said she was numb, the whole family is numb and how could it be otherwise? I JUST SAW HER! That’s what I cannot let go of, less than two months ago the girls played together and it just felt good, I never once worried that she wouldn’t make it, she always seemed to very healthy, even when I knew there was concern for her. She had leukemia and although most of the more common type of leukemia has an incredible success rate, she had a more rare form. Fear turns to doubt so easily and gives way to the unpleasantness of life, the dark side, the part we don’t understand, the part we all know is our destiny but have no notion of what it will be. I find in incredible that we all live here on this planet, sometimes for almost a century, planning and sorting and learning and creating, knowing it is all fleeting. If that is true, then why do we take it all so seriously? Perhaps it is because we know no other way and it may be one thing we feel we can control.

Jeff and I decided it was a good idea not to tell Autumn right away. Her spirits are so high and the news may just crush her even though she may not fully understand what it all means. I know how empty I felt when I heard, how incredibly hard it is to take news like that, I cannot imagine what effects it may have on the psyche of a child.

It can only be one more reminder to all of us to live a happy life, a loving life, a good life, a fulfilled life, and nothing less.

Wednesday, February 15, 2012

“Oh that stuff makes you feel really bad, doesn’t it?” Autumn said as she leaned over the chair seated next to our neighbor at the Cancer Care Clinic. “I remember just how it made my nose feel terrible, eeewww, does it do that to you too?” she questioned. “Not so much” said Carie, “I don’t feel a thing in my nose, but my whole body feels bad.” “I know, I remember” whispered Autumn as she stared intensely at the steel casing around the machine delivering Carie’s chemo directly into the vein on her right arm.

Although Carie didn’t need a port, the effects are still the same, loss of hair, losing weight and tons of frustration with life. I made a quick trip to the grocery store while Autumn stayed with her to talk, she was fascinated.

Monday, February 13, 2012

We have a date set for Autumn’s first post-chemo scan – February 21st followed by a fiesta. It seems so long ago now that we celebrated her birthday and end-of-chemo, but it was merely one month. Tom Petty said is accurately, “the waiting is the hardest part”. If you have a moment to think of Autumn this week, please send her the most positive vibes you can!

Thursday, February 9, 2012

“Is this my real hair?? Not a wig?!” The excitement was mounting, the feeling that she is going to be herself again was sweet and wonderful! It has been a very fun week seeing the small hairs sprout through Autumn’s perfect little head…

Tuesday, February 7, 2012

Our initial response to an experience can often be so profoundly different than how it feels after it has been absorbed for a period of time. This past month has been a lot like that. I feel as though we are floating in space…waiting…

Autumn will most likely have her first post-chemo scan next week. Part of me cannot wait to have something in hand that shows she looks fabulous inside, but I would be lying if I said I wasn’t frightened.

Friday, February 3, 2012

On the way to school this morning, the sun filtered through the car window onto the soft fluff garnishing her sweet head, wonderful peach fuzz! Her hair has begun to grow in the past, inbetween chemo rounds, but this is something different, and it’s everywhere! 

Images of Autumn with beautiful long hair came to mind and I imagined her going to school with Sage and Lindsey next year, a new life for a little girl who has gone through so much. It can be a new beginning, a wonderful happy new life!

They say those things that don’t destroy you make you stronger; she has undoubtedly a very strong spirit that will surely assist her throughout her entire life. I consider how different this whole experience has made her, will make her and how that will affect her future decision making abilities. Now that she has seen the dark side of life I wonder if she will be able to live more lightly. A gift that no parent would give willingly to their own child that may have unforeseen benefits for years to come.

It was about a year ago that Autumn fell in the beauty school where I was having my hair cut. My sense of time has been so distorted this past year and I am surprised how fast it seems to have gone now that it is in the past. It is similar to the last few months of pregnancy. Huge and uncomfortable, you cannot wait to have the baby, but about a month after giving birth, it seems as though that story belonged to someone else. I am beginning to feel this same distance and it feels good.

Friday, January 27, 2012

In the car on the way to preschool this morning, Autumn had a moment to play with my phone right after we dropped off her sisters Sage and Lindsey at their school, the big one.  “Can we call Lucas’ mom please” she begged. “Why” I asked. “Well, I think he is my, you know, boyfriend..he, he, he!” she giggled for a good long while then asked, “Can we?, I really want a playdate”. I let her know that I didn’t have his phone number, but that when we arrived at school, we could surely ask his mom. What happened next? She simply began dialing a number and then said, “Oh, I wonder if they will speak Spanish or English, I wonder if this will be Lucas?”. I said, “Who are you calling?” She replied, “I think it’s Lucas, but I’m not sure, I just dialed a number.” I really think she believes that if she just hit a few numbers that soon enough she would get him or someone we knew. I think the world of children is so small, that they cannot fathom that there is SO much going on in this world, so many people and other kids and grandmothers and grandfathers and aunts and uncles and friends out there. They know who they know and cannot imagine it is any bigger than that. So yes, of course, one should be able to dial any number in the phone and find someone to talk to!

Another great day, a beautiful day along the coast of California, I don’t think we could live anywhere else (but I’d love to travel everywhere!).

“From now on I am going to call grandpa, “Buttercup” and Nanie, “Flowerhead”. Wow, that is too funny and something I just couldn’t pass up! Those were Autumn’s last words before she fell fast asleep…I’m not sure her grandparent’s will approve, but is sure was cute!

Wednesday, January 25, 2012

It felt wonderful yet strange today to call the nurses in Santa Barbara. I had to ask them about Autumn’s next appointment for her first post-chemo scan. Thankfully, there is no rush, she isn’t even on the books which means we are free for another 2 weeks! What an amazing feeling, how free I feel, I can hardly imagine what Autumn must think. Although she hasn’t said much about any of it, I am sure she is ready for her hair to grow back! She runs around the house all day long with her various beautiful princess dresses (my favorite being one that we found at Goodwill that looks like a little bride’s gown) and her “Rapunzel hair” which could be made from just about anything from a ribbon to a piece of material that can stick to her head with tape or more ribbon, anything goes! We have had our share of wigs here and there, but she never, ever wants anything to do with them. She may rarely try one on for a split second, but then off it goes. Ahhh…I will relish in these moments of peace and tranquility and appreciate them evermore!

Tuesday, January 24, 2012
“How can he peel a banana?” Autumn woke up this morning and asked me, as if she had been thinking of this all night long, pondering the particulars in her sleep. Her little mind just goes, and I love where it lands, what unique perspective she has and what she brings into this world, into my life! I am so lucky to have her!! “He is the most amazing man ever!” she declared. She is referring to the man who was born without any legs or arms, Mr Vujicic, a hero of hers and most likely the most amazing person alive, and there’s no hiding that from this little inquisitive girl. We have seen a few videos of his, so I did my best to imagine how he could peel a banana, perhaps with his mouth? He does have one smaller foot that really helps him in all sorts of tricky situations. His home is modified to suit his needs and he can do everything anyone else can, but he struggled a lot before he decided life was worth living and he was going to make the best of it. My god he has, and how many people he has inspired along the way! I hope Autumn has the chance to meet him someday 

Saturday, January 21, 2012

The familiar thick, pink liquid sat next to her cup of juice table this morning. “Do I have to take bactrim again?” she pleaded. She has a way of playing with the long teaspoon in which it is administered. Somedays we all chant, “Go Autumn, Go Autumn…” over and over again to make her feel special! Autumn has had to take bactrim every Saturday and Sunday for the past year and she simply cannot stand the taste. I tried it once (as did the rest of the family) and it didn’t seem so terrible to me, but nothing ever is when it isn’t obligatory. The antibiotic is a necessary precaution to her well being and we have to continue with its implementation for the next 3 months, then perhaps never again!

I can’t help but be haunted by the ugly thought that somehow Autumn could ever be in harms’ way again. If my mind goes there, even for a millisecond, I can freak out at the possibility. I hate that about our minds, it would be so wonderful to just shut them off sometimes, or at least mute them to the point of indistinguishable. Autumn has been such a trooper, she has gone through so much and she is now a healthy, happy little five year old girl, it is a wonderful thought and I love for my mind to remember this, to remember now, to remember the present moment. She has had a marvelous weekend so far playing with some of her favorite friends like Kiki and Scarlett who have been there for her every step of the way and for that I am so grateful!

Wednesday, January 18, 2012

Preschool is an amazing place; I think it is something that I have taken for granted over the past 6 years while all three of my girls have been crossing that plate into kindergarten and beyond. The teachers Autumn has had (as well as Sage and Lindsey) are so incredibly patience and supportive and loving and have endless energy to spend with the kids. On occasion I will spend a moment in the class with Autumn just to observe the manner in which her teacher leads the kids from one project to another, from playtime to work time, or out of a potential argument into something more creative. This morning, Autumn found herself struggling with a fake mandarin she had accidently lodged in a plastic teapot while attempting to create a tea party for her friends. Her teacher noticed her frustration and simply stated “well, now you know that things of those sizes should not be places inside our teapots at school.” It was a great learning moment and although Autumn was a bit embarrassed, she learned a lesson and no one was upset or mad. Foolishness can overtake a parent’s desire to make a child feel terrible for doing something wrong, but often a kid is really just trying to figure out this crazy world we live in and when they are not given the proper direction and love they need, it can make for a very frustrated and confused adult.

I loved the lady we met at Starbucks today. While she was diligently working on her computer, Autumn suddenly decided she just wanted to be right next to her. She picked up her drink (a green tea frap of course!) and a host of other things she had at the table we had been occupying. When she found herself at her new location, she kept wiggling her butt and dancing around and laughing in front of this lady, she was in a fabulous mood! The woman kindly kept looking in our direction and after awhile said, “I wish I could have as much fun as you are having today, but I have work to do.” She wasn’t upset, but her point was well taken.

“I think if I have all of the energy in the world, I can run as fast as a cheetah!” – Autumn 5

Life is short.

Monday, January 16, 2012

“Look mommy, it’s my hair” Autumn shouted as she bounced out of bed this morning. “Her hair?” I thought, she must have had a dream and an image of long hair was still lingering in her head. “It’s over there, hanging on the corner of the bed, just next to a big soft pillow her sister uses to block out sunlight”. I was able to see what had her so excited, it was a long beige headband that Sage had made for her this weekend and she was happy to see it this morning, delighted that it was the first thing her sweet brown eyes had had the pleasure to detect. I thought she might run over and put it on, instead she just allowed it to hang there as another memory that will surely one day join many others in a big box that I can imagine will be stored for future recall when necessary. I envision Autumn in her twenties looking into this box of belongings that were part of her life as a young girl. What will she be thinking, what memories will she even maintain after so many years, will it help in any way?

This past week has been nothing less than blissful. It is almost impossible to imagine that Autumn has made it this far so gracefully. It is even more amazing to think that we have no scheduled trips to SB anytime soon, not for another month I cannot tell you how free that makes me feel, I can only imagine it from her perspective! The oncologist mentioned that this time period can be much more difficult than active chemotherapy because during that time something is being done, cancer is being treated and there is a sense of control. Human beings don’t work very well in a state of groundlessness and I have been no exception. Kids seem to handle this state much better than their older (and supposedly “wiser”) counterparts which makes this situation a whole lot easier to deal with.

This week Autumn is going to try swim lessons since she loves to swim but hasn’t quite made it across the pool without holding on. She has been asking about them for sometime as summer draws ever closer, I want to make it a priority for her. I am so looking forward to the possibilities of this coming year, with the perspective of 2011, it should be easy to appreciate even the smallest of miracles!

Monday, January 9, 2012

Today was the first day in a long time that life felt “normal” if it can ever be described by any of us that way. It was a Monday unlike any I have had in a long time. I feel as though this year will bring lots of new beginnings, in so many ways. Grandpa John, Uncle Craig, Dan, Grandma Marji and Grandpa Frank were all staying at the Marriott in SLO and we were able to join them this morning for a great swim and a delicious breakfast before we had to go to school, a perfect start to any day!

Yesterday almost felt like a marvelous dream with so many people joining us to celebrate Autumn’s transition into a much anticipated cancer-free time. There was a hint of the “Wizard of Oz” in the air in every direction as I saw so many friendly, loving faces of people that have cared so much for a little girl who they may have met once or known her entire life. She bounced and bounced in the Tangled House and joyfully ran throughout the exhibits at the Exploration Station with a big, huge, happy smile on her face, it was glorious and more than I could have ever asked for. “How could one kid have so much energy?” was the prevailing question of the day. “She was back to where she wanted to be”, commented one person, it just felt right to see her there, almost like none of it had ever happened.

I want to thank everyone for everything that you have done for Autumn and all of us this past year. We were so happy to see you all there yesterday! Autumn has opened most of her gifts (we try to spread it out over a few days!) and I am happy to announce that we were able to purchase the toy car she really wanted, hooray!

We have our first post-chemo scans in about a month. I will be nervous but very hopeful that we have killed anything that may ever decide to come creeping back into her petite, vulnerable yet tenacious body. For now, we are living in the present for as far as any of us know, it is all we have, and I am thankful to be right here.

Sunday, January 8, 2012

What a wonderful day!! We have hopefully come to the end of this road, turned over a new leaf, and begun a new journey, HOORAY!!!!

Thank you everyone for all that you have done to help us along this incredible journey!

Thursday, January 5, 2012

Yesterday Autumn and I visited our favorite coffee shop in town. As usual, the two corner window hide-outs were taken and Autumn decided she was going to ask the young lady currently occupying her favorite spot if she could join in. I love how bold she has become. The girl graciously allowed us to sit with her and we began another fun journey. Autumn had so many stories she wanted to share with her and the two of them chatted for a long time, perhaps almost an hour. Towards the end of their conversation, Autumn brought up the movie “Soul Surfer” and told this girl just how much she liked the movie and how scary it was that the girl lost her arm to a shark. Autumn has had a crazy fascination with that movie ever since she first saw it, she has talked about losing an arm and what that means and how frightening sharks can be. I have explained to her that there are about 350 species of sharks and only about 7 of them are actually harmful, but none of that matters, it only takes one! The movie is powerful and perhaps a bit much for a little one, but after everything she has had to tolerate in her five years of life, it seemed appropriate.

After allowing her to talk for some time, this girl in the coffee shop picked up the book she was reading and showed Autumn a photo of the girl Autumn had been describing! I love how connected we all are, perhaps less than 6 degrees if we had time to investigate each other’s connections. This particular book was about an Australian man named Nick Vujicic, who was born without any arms or legs. His story is simply inspiring and motivating. Over the course of his life, he has learned to do just about everything including scuba diving, golfing and surfing which he had learned from Bethany, the girl who had lost her arm to a shark. Autumn spent a long time looking at those pictures of Nick Vujicic, baby photos and beyond, she had so many questions.

I found this link:

There are photos and videos of this man’s life, they are worth watching.

We had to spend most of the day at the hospital today…Autumn was in need of a blood transfusion. We met a sweet little girl who had been there for 10 days due to a burst appendix. She spoke only Spanish and it motivated the hell out of Autumn to speak as much Spanish as she could, it was adorable! They worked on arts and crafts for hours, it was more like preschool than anything and I was thankful. Autumn is always so full of energy after blood transfusions; at 9:30pm, she is still awake, yikes!

Wednesday, January 4, 2012

I felt the tears form and surface at the corners of my eyes, as if every emotion I have held back in the past 10 months were contained in that one tiny space. Autumn had just completed her last round of chemo, and it was thankfully a very “light” one, so quick in fact that it hardly seemed as though anything happened. Emotions are bizarre; humans seem to have this uncanny ability to be strong when we need to be, especially when the focus in on your child. I cannot describe how I have felt over the past 10 months, some days I felt just fine while others were quite difficult. There are so many ways one’s brain can react to trauma, so many stories it can create because our minds have a hard time shutting off.

I remember the time Autumn and I were driving down to Santa Barbara early in the morning some months ago and I had to stop to put numbing cream on her port. She was so bummed that we were going to do this AGAIN that she began to cry in sadness and frustration. All I could do was to tell her I was so sorry she had to be the one to go through this and that I would take her place if there was any way. I turned in my seat and cried more than I ever have in my life, I just couldn’t stop the tears because I felt so much pain and anger and confusion and helplessness at the situation and life altogether.

A friend whose daughter also had Wilm’s told me that the day would come when all of this would end, because nothing ever lasts forever. If yesterday was in fact that day, I am forever grateful!

Autumn loves Chinese food, so we located a delicious restaurant close to the clinic and feasted in honor of this great day! Uncle Adam, Auntie Alma, Camila, Nanie, Gramps, Uncle Bob, Janie Pie, Jeff, the girls and I were celebrating a day to remember for many years to come. One of the female waitresses sung Happy Birthday to Autumn in Mandarin while Autumn buried her little head in embarrassment, but she loved the attention, the gifts and the cake.

Today is Autumn’s 5th birthday and what a better gift to receive?? I am looking into 2012 with beautiful thoughts and happiness and peace for this little girl who has endured so much in one year. I am thinking of her sisters who have had to take a tough back seat to their sister’s illness which as anyone can imagine, is never very easy.

There has been so much love from our family, friends and this community which has made this journey a whole lot more painless to navigate. I cannot imagine going at this alone, it would never work.

Autumn returned to preschool today and loved every moment of it. When I came to pick her up at noon, she was still running at lightning speed having a blast with her little friends, it was wonderful to see. It was the first day that felt like a day before any of this ever happened, it was serene.

Monday, January 2, 2012

“Mommy, did you know that the number 3 looks just like a butt?” Autumn’s insight is fun and silly and downright hilarious! Kids DO say the darndest things, don’t they?

I can hardly believe that we are finally at the finish line, at least this phase (perhaps forever!!) of Autumn’s treatment! Tomorrow is a BIG day for her and all the family is going to make it to the clinic to wish her a happy new year and a happy birthday and a WONDERFUL end-of-chemo celebration!!!!! It has been a long road, one that was filled with so many unknowns and frustrations, but we have made it for now, she has gone the distance. We will be thinking of all of you and everything that you have done for all of us over this past year. We are so very grateful for each and every one of you in our lives, without your support we could not have made it this far, it would have been impossible.