Friday, December 30, 2011

Autumn has had such a great week filled with lots of playdates and fun! We made it to her favorite place, Chuck E Cheese on Tuesday after her second-to-last treatment, her friend Natalie met us there and what fun they had together. Earlier in the day Cailin (another 4 year old friend), joined us on our journey to the hospital. The two had a great time in the car with Uncle Bob and me while Sage stayed with a friend and Lindsey with Auntie Janet. Sometimes it just makes more sense to divide and conquer.

I hope everyone has a Happy New Year celebration this Saturday! I am looking forward to a happy and healthy 2012!

Monday, December 26, 2011


Last night I had a heck of a time falling asleep; perhaps it was the end of Christmas or the beginning of a fresh and fabulous New Year. I considered the circumference of the earth, almost 25 thousand miles in a straight shot around the equator. What would it take for a human to see one linear portion of earth and could it even be done in a lifetime? I thought about the average lifespan, somewhere in the neighborhood of 70 years, about 25,000 days of life. It sounds like a lot of time however, if one individual were to walk and investigate and discover everything there is to know about one mile each day of one’s life, which is a lot of exploring considering there is a lot to see that distance, it would take an entire lifetime to explore all that space, ONE LIFETIME. I had to rethink it about four times just to make sure that it would really take that long. It seems as though there is so much to explore on earth, but is there really THAT much? How would one person take that on? Perhaps one could just start walking, one mile a day and stop and smell the roses whenever there were any. It really only takes about 20 minutes to walk a mile, however if you made an effort to really explore the territory and enjoy the land and meet the people and the animals and plants, it could easily take one day to uncover all there is to see during that one mile voyage. Do that from age 10 until 80 and you have seen one small strip of the earth from which you could extrapolate your entire existence. Do it around the equator and you have seen a very small range of temperature and climate shifts and it could seem like the earth was a very homogenous place to live.

On another note, we are headed to SB tomorrow for Autumn’s second to last day of chemo, HOORAY! I can hardly believe it, what a journey this has been.

Thursday, December 22, 2011

Absolutely amazing! Incredibly hard to believe that Monday may have been the very last time Autumn will have chemo IN the hospital. We still have two more weeks left, but each is a short visit at the clinic located across the street from Cottage Hospital. Both treatments are Vinchristine, short but not so sweet injections of a tiny vial of potent poison, awful to think to deeply about. The one crappy side effect is the joint pain, remember the rotating wrists pain that Autumn struggles with?

We arrived to SB at about 8:30 am Monday morning and we didn't leave until 10:30 at night. Fourteen long hours after which a night's stay in a hotel was the only viable option. I had brought many things to do that day, arts and crafts, books, movies but alas, Sage and Lindsey had their moments, and I tried, desperately at times, to show them just what Autumn has to go through time and again and to be supportive sisters. The big girls have been there many times before, but this was the last one and since they didn't have school, off we went! I know at some level Autumn appreciates the support however difficult it can be to have them all there. The nurses are so wonderful to all of us. Autumn's favorite "Naners" was there to help cheer her up!

This particular cocktail consisted of three types of chemo, the second being bright red in color and extremely irritating to her nose. The nurse enters the room in a special suit to protect herself in case of any leakage during the set up and administering process. The damage to the skin can be intense which leads one to wonder how on earth it can enter a little girls' blood stream and not destroy her veins. Although I know it is saving her life, it is tortuous to watch the chemo crawl slowly through the transparent plastic tubing as it makes it's way to her port. Almost instantly but without anticipation, she feels her nose tingle and within moments she can hardly stand the irritation is causes her and she begins to cry. I hate watching that that crap enter her vulnerable tiny frame, it's enough to drive a mother mad!

On a more positive note, we are staying at a local hotel with our aunt and uncle this week, a perfect staycation with a heated indoor pool and jacuzzi as well as a gourmet breakfast topped off with a luxurious happy hour, what else could anyone ask for? Autumn, Sage and Lindsey are having a ball!

One of the waiters approached us today to ask about Autumn, he revealed to her that he too had a port placed in his chest some three years ago and it was still there. Autumn was curious to see it and immediately showed him he own "bump". There is a club that exists who's members know each other's stories in ways the rest of us never will. The man began to cry as he told us his story then he reached for Autumn to give her a hug and his support. I have no idea if she can even understand how profoundly she has touched so many people with her own story, but I have a feeling she must.

Sunday, December 18, 2011

I love this time of year, it is so peaceful and a warm time for reflection on the past year with a hint of excitement for the future one so near. Autumn had a good weekend with family and friends; her endless energy and courageous attitude never cease to astonish me. The girls and I are heading to SB in the morning for our very last LONG day at the hospital. I will treasure the drive, the stay and the hotel room we will have because it is almost impossible to return on the same day without feeling really sleepy. I have no idea if Autumn really understands that there may very well be an “end” to this new life she has been leading. We met a three-year-old boy at Sierra last week who had just discovered he had Type 1 diabetes. He wanted to visit Autumn while she was having her blood drawn and her mom seemed willing to allow her son to really understand what another kid may be going through. He seemed somewhat interested during our first visit, but he became increasingly more fascinated as time wore on. He and Autumn hit it off and were buddies the rest of the day. I remember Autumn asking this little boy when he was going to be “done” and his mommy said, “well, this is something that he will have forever, he will have to take shots in his tummy the rest of his life.” Autumn said to her, “really?, his whole life?”. Cancer is no fun, but the good news in that at some point in the survivor’s life, there is an end. My father was diagnosed with type 1 diabetes at the age of 16, but he never took care of himself and he passed away homeless in his car in Las Vegas when he was only 49. I spent the rest of the day thinking of that little boy, and Autumn, and medical research, and one’s state of mind and how all of these things can profoundly affect the outcome of our quality of life. We can hardly control anything in our human forms, but that little boy’s mom had a great attitude as do most of the parents I have met throughout this incredible journey, which is about the only thing we can control.

Saturday, December 17, 2011

It's the first time that I can remember that Autumn has actually been sick, with a real, bonafide cold. Perhaps the chemo has something to do with that, because it is so strong, it may just kill bacteria and viruses along the way. The great news is that she doesn't have a fever, but I wonder how this may affect her scheduled chemo this coming Monday.

We are attempting a garage sale today. Sage and Lindsey are having a blast selling everything they are able(they have made $11 so far)while Autumn is staying inside. She is in great spirits and doing well so far!

Thursday, December 15, 2011

It is possible that this may be the last visit we ever have in Sierra, if everything goes well from this point forward. Autumn had a blood test today that revealed substantial improvements in her hemoglobin, platelets and white blood cells, such a progression in fact that we are now scheduled to begin her final stage of chemo this coming Monday morning, how amazing and wonderful!!!

She had an abundance of energy today, up until about 9pm at which point she just completely collapsed from exhaustion, but who could blame her? Tomorrow she may head to preschool for a bit to celebrate the holiday season with her playmates!

Wednesday, December 14, 2011

Autumn had such a fabulous day at preschool! She was thrilled to go and stay, even through lunch. Mrs. Lindsey mentioned that she did have a few moments of fatigue in keeping up with the other little kids, but overall she is an energy princess! It always amazes me just how much she has and how long it lasts, it is a wonderful, wonderful thing!

We are off to the hospital tomorrow to have a look at Autumn’s blood levels in an attempt to determine the next step. We still have three active weeks of chemo and it’s a waiting game until that begins. I feel a bit like Autumn and I are holding hands, running, jogging really, in place, on a path we’ve never been knowing there is a finish line but having no idea where it is, how many more road signs we may have to encounter before we see the iconic magnificent flag waving in the wind, welcoming and congratulating her (us, everyone) for everything she has had to endure her entire fourth year of life.

It is remarkable what we remember from our childhood, isn’t it? We lived all of those years being little, and it seemed so long when we were there, however when we are grown it seems like it was just a flash, a moment in history, so distant at times it often feels as if it wasn’t even our own story. One of the little girls we met at the Cottage Holiday Fiesta who had Wilm’s when she was only six had just turned 13. I asked her what she could remember about her cancer and all that she had tolerated in her young life. All she could say was, “I remember being in the hospital sometimes.” REALLY? That’s it? Could it be? Autumn is even younger than she was in which case one could extrapolate that she may remember almost nothing from all of this, quite remarkable isn’t it? What we have yet to uncover in the depths of our consciousness can only be absolutely profound. We may have to wait another lifetime for an answer but you can be sure it’s out there, just waiting to be revealed!

“Don’t you know, my hair is going to be even longer than Rapunzel’s” – Autumn after school today

Tuesday, December 13, 2011

Anticipation and anxiety barely begin to describe how my heart feels today. I just cannot seem to act completely normal. I am trying, especially at times like these, to be ever more present in each moment of each day since I don’t want to take anything for granted. Silly mundane things can potentially create negative responses throughout the day, so it can be challenging, but I am up for that challenge.

The girls are so very excited about Christmas and that has kept my focus on other things rather than just the end-of-chemo-what-next mumbo jumbo. I am so very happy for Autumn, so very delighted to be on a new path, one that includes more play dates and less worry!!! I know there will always be doubts rattling around in the back of my head, that is inevitable, however with each new day I will be thankful that she is here and doing well and loving life!!

Monday, December 12, 2011

On our journey home from LA this morning, we stopped in Santa Barbara for their annual Cottage Hospital Holiday festivities at the Earl Warren Showground. It was a marvelous celebration filled with caroling, crafts, an appetizing feast and a visit from Papa Noel! It was great to be in a place where you felt quite understood by almost everyone in your presence. Everywhere you looked there was someone with whom you could relate, even without words. Autumn loved every minute of it, she wore her white, elegant, lacey dress which brought her great joy and a smile as wide as the ocean as people commented on its beauty.

Later in the day, we had the opportunity to meet two other girls, now teenagers, who had a Wilm’s tumor at a very young age (one at 2, the other at 6). Both girls are doing very well today with no side effects at all; I can hardly explain how elated their stories made me feel!

Santa Claus had a gift for every child in the room, including all the siblings. Sage and Lindsey were over the moon, they had no idea there was something in it for them! Sage received a Hello Kitty sewing machine that she immediately put into action the moment we returned home. Lindsey merrily displayed her gift, a large make-up set that any grown woman would envy. The only problem, it made Autumn terribly jealous because she felt her beauty-parlor doll was no match for such a lovely make-up kit which then sent her into a fit of anger and frustration for the next 20 minutes. Ugh…when does that ever end? We all tried to explain that we need to be thankful for what we have, for what we are given, but she would hear nothing of the sort!

On the ride home, Lindsey opened Autumn’s gift in the car. The moment she showed interest in it, Autumn calmed down and realized that since her gift was also desired, it must be worthy of her attention. Not exactly what Santa intended, but a lot in life can seem unfair until we live long enough to see that the grass grows on many hills, and there is always more to the story than just the other side.

Sunday, December 11, 2011

As I walked into the bathroom of our hotel located in the lovely Mission Hills, Autumn looked up at me with a big smile on her face from the nice warm bath in which she had relaxed so completely. I noticed her slender body covered by so many little bruises and her dime-sized "bump" located on the right side of her left chest. I remember one of the nurses commenting that she was so easy to "access" because her port was high and covered with a thin layer of skin. For a brief moment it makes me sad to witness such innocence but so happy to know it won't last forever.

We are heading back up to Santa Barbara today for a holiday party at Cottage Hospital. It will be nice to again be surrounded by other families who understand and sympathize with our situation. Autumn has a beautiful white dress on today to celebrate this gorgeous Sunday!

Saturday, December 10, 2011

Sage and Lindsey had their first basketball game today! Nanie, grandpa and the girls met me after my usual Saturday biology class in Santa Maria and we headed south on the 101 to LA to join grandpa's family in a holiday celebration. Uncle Adam, Auntie Alma and Camila were there as well. We have been attending their family's Christmas celebration for over 20 years which seems unbelievable to me, just how much time has passed. Most of them we only see once a year, I think it was tough for them to see Autumn as it was their only encounter with her since a year ago when we had no clue what she had brewing inside her tummy.

The family tradition includes skits acted out by each family. Grandpa had the girls in his skit this year and it was hilarious! A HUGE Green Bay fan, grandpa's skit was a tribute to the undefeated Packers, an easy target. Autumn was the grand finale, carrying a GB sign and wearing a jersey adornded with cheese dice and a nice, big slice of cheese right on her head. Santa dropped in for a quick hello and a few photos, what a busy guy and how thoughtful!

Tonight a little boy asked Autumn why she didn't have any hair but she didn't seem bothered by it. I have no idea what could have been different, perhaps it was just in the joy of the season, but she wasn't upset and that was good to experience.

The girls are all asleep at the moment, undoubtedly dreaming of Christmas...

Friday, December 9, 2011

Autumn spent a few hours with Grandpa this morning which was great for both of them. Sage and Lindsey had the opportunity to try out a local climbing gym this afternoon with their Girl Scout Troop. There were no harnesses, just walls at various angles and textures open to climb and all of the girls loved it! Autumn and a friend had a blast playing with the dusty, white chalk filling small sacks that were strewn about everywhere on the floor, what a fun mess! Oh how she thrives when she is with other little kids! I can see the happiness grow in her sweet face when she is among playmates. She needs and wants to be recognized as “one of the gang” and feels miserably left out when she hasn’t had that in awhile.
“I miss my family that I haven’t met.” While on the ride home from school today, Sage and Lindsey were talking about their ancestors, who they were and what they meant to them. I just loved Autumn’s comment, how little kids can be so loving at such a young, innocent age it amazes me.

Except from the long hospital stays and the really rough tantrums that Autumn can have, life has been good and I am very thankful for that. Some days are more challenging than others and for some reason today was one of those days. Normally, it’s as if everything feels fairly normal, fairly good and then all of the sudden a small, seemingly inconsequential interruption can change the course of one day. I try not to give those moments much energy, but it isn’t always that easy. The interaction between Autumn, Sage and Lindsey is great at times (I am assuming this is normal for most sisters), but at other times, it can be so difficult! Sage will say that she feels Autumn gets everything she wants and it’s unfair. Lindsey won’t verbalize that, but her actions display the same sentiment. It feels like there needs to be some sort of play book, something to which I can refer to in case of emergency or other trauma. In a sense I guess we all reinvent the wheel at some point, however useless that seems.

My friend treated me to a meditation yoga class this evening at our local gym. It was relaxing and wonderful and just what I needed, thanks Roxanne!

Wednesday, December 7, 2011

Autumn was able to attend preschool today, she was so excited she could hardly stand it! A princess she was, all day long and everyone just loved it. She heard a lot of positive feedback from various people in the store, at school and in the hospital.

We needed no transfusion today, what a relief! Her hemoglobin was 7.4 (it has come down a bit from last week-but again that’s to be expected) and her platelets were 25 (up from 20 last week!) She still has a lot of bruising on her skin, her head and parts of her little arms and legs. The nurses at Cottage said that was pretty typical and that some of them may persist for months after treatment. There are a lot of other crappy side effects that one may experience such as hearing loss.

The good news is that we are almost to the finish line!!!!!

Monday, December 5, 2011

No bactrum? No shots? No clinic? No hospital? “Nope!” I answered with a sign of relief. These are the questions that begin each and every day at our house in the morning, usually over a bowl of cereal at the breakfast table. We are literally counting the weeks, almost the days! I find myself blurting it out to EVERYONE I meet on the street…that we only have a few weeks left (as if they all need to know our story). “Hello, this is Autumn, yes she has cancer, but we are almost done with treatments, it’s been a very long haul, but by the New Year we should be finished!” I must have said this 20 times today, I wonder if I could see myself what I would think about my nervousness as well as excitement.

Autumn had her beautiful Cinderella dress on today and it served well as we met Santa at his lovely abode downtown in Mission Plaza today. He was charming and warm and instantly loved little Autumn. One of my old students was taking the photos and graciously donated the photo to us, so I am leaving it here to share with you.

Sunday, December 4, 2011

No transfusion!!! What a great day it was on Friday…although it took 3 hours to determine, at the very least we didn’t have to have any new blood, Autumn’s body is once again reprogrammed to rebuild her own cells. I can imagine what her bone marrow must be saying, “stop the madness!! We’d had enough!”

We have an official date set to celebrate Autumn’s END-OF-CHEMO and 5th BIRTHDAY!!!!! It will be on Sunday, January 8th at 12 noon, please EVERYONE join us! It will be held at the Exploration Station in Grover Beach for a very kid-friendly event.

Thursday, December 1, 2011

Autumn seems to be doing so very well today! I hope she is recovering quickly from this last round of chemo and is set to end this crazy chapter of her life.

While inside a coffee shop today I saw an old friend. Autumn was being as silly as ever and began singing out loud (very loud) “Oh…who’s going to eat a bagel…I am!!” to the tune of something silly she created in her head. She continued with this song over and over so many times that people must have thought she was ADD, it was a funny moment in time. The great news is that she can frequently get away with most of the silly things in life we all want to do but feel too embarrassed to do. People often take a look and her and usually become very sympathetic, loving, giving and helpful. It’s amazing, we all really do poses these qualities we just don’t often share them with one another as often as we should.

During this silly moment, my friend made her way over to our table to greet us and she introduced us to a friend of hers who was standing by her side. This beautiful, amazing woman began to share a little bit of her story with us. She looked at Autumn and said, “I am bald just like you!” Of course no one could see that because she had a lovely wig and a warm, knit hat covering her head. She unveiled her baldness to Autumn and she instantly had a compadre in both heart and soul.

This woman had already battled cancer 7 years ago and it came back. She then battled it AGAIN about a year ago and it returned once again. She looks amazing, one would never guess what she has been through. She has done it all such as visiting a graveyard with her kids (11 and 9) and creating a bucket list in response to her daughter’s request. Hearing her story was inspiring and made me realize that we all have our stories, each one unique and as important as the last. No one leaves this planet alive; we all know that, but do we really live that way??? Where is your bucket list? I just started mine.