Thursday, September 13, 2012
Wednesday, August 22, 2012
Wednesday, August 8, 2012
Tuesday, June 5, 2012
Monday, June 4, 2012
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
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!
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 village...life will be anything but dull for the next week!!
Thursday, May 31, 2012
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 asleep...as 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 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
Friday, May 18, 2012
Friday, May 11, 2012
Wednesday, May 2, 2012
Wednesday, April 25, 2012
Saturday, April 21, 2012
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
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!
Sunday, April 8, 2012
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! :)
Saturday, March 31, 2012
Sunday, March 18, 2012
Wednesday, March 14, 2012
Friday, March 9, 2012
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
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
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
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
Sunday, February 26, 2012
Tuesday, February 21, 2012
Monday, February 20, 2012
Saturday, February 18, 2012
Thursday, February 16, 2012
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
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
Thursday, February 9, 2012
Tuesday, February 7, 2012
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
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
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
Tuesday, January 24, 2012
Saturday, January 21, 2012
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
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
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
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
Thursday, January 5, 2012
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 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
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.