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

24901

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.

Wednesday, November 30, 2011

What a day! Disneyland is much as I remembered it as a little girl but a lot has changed over the course of 30 years. The girls had a great time although sprinkled with small disasters such as Autumn totally loosing it at the gift shop in front of “It’s a small world” because she didn’t get a toy that she suddenly became obsessed with. That trauma lasted well over an hour and made all of us involved feel terrible! Nothing like telling a little girl with cancer no and having her scream and cry about it, with her little bald head at Disneyland…I must have looked like a unforgiving, unloving mother, it was no fun.  It is so hard, but I have learned from other parents that it is too easy to give in due to circumstance, however when all is said and done, one may be left with a child that cannot ever take ‘no’ for an answer and the discipline has to start all over again. Autumn has so much love and receives so many gifts that she is in no danger of having too little, but the guilt still lingers, why is that??

We had a letter from the doctor’s office that allowed us to obtain a pass at City Hall which meant we could go through the exit to jump in line instead of waiting each time, what a treat! The lines were very short in most cases, so it was hardly an issue, but it helped with reducing the amount of people with whom we had to come in contact. Before and after each and every ride I diligently wiped down all parts that may come into contact with Autumn’s skin, then wiped her hands bother before and after. She grew tired of that pretty quickly and it appeared as though I was an OCD mom that just wouldn’t give it up.

We just made it back a moment ago and I feel exhausted! The drive at night was easy due to a lack of traffic, but difficult since the freeway was covered in thick, relenting fog punctuated by moments of clear, dark night, much like the last 10 months of our lives. I had a lot of quiet time (another great reason to drive at night!) to reflect on this past year and what changes have been brought to our family. Perhaps there is a reason that people have to endure particular events, we may never know why, but it makes me feel better to think so. We had a lot of looks, stares and interest from all sorts of strangers. I wonder what that attention does to a little one and her siblings and how that shapes their childhood.


I felt the urge to consume one tablet of no doz for the long journey home...it must have worked because I am still awake and it's 2am!!

Monday, November 28, 2011

We began our morning bright and early, the day was sunny and beautiful and the sky was so clear. The girls were all so excited because they knew something big was going to happen and they had no idea what it was. I handed Autumn her piece of plastic with the numbing cream and she faithfully placed it under her shirt and on skin covering her port. In order to work sucessfully, the cream needs to cover the skin for at least one hour prior to being accessed. When we are at the hospital, she removes the plastic, cleans the skin with cloth wipes and waits patiently for the alcohol scrubber. The nurses always joke that if it was up to Autumn, she would access herself! She is an angel when it comes to so many of the daily procedures of this new life she has had to endure. She just does what she needs to do and moves on, almost as if she were doing something so benign as brushing her teeth.

The plan was to head to SB for a blood check and then make an escape to our final destination. As it turns out, Autumn needed only platelets today, hooray! At the clinic, it only takes perhaps one full hour for them to administer, and perhaps another hour to wait for the blood to be delivered, then one more to wait for the results of the blood test (i just realized I wrote this in reverse order :).

At any rate, we arrived at about 9:15 am and left at about 1:15 full of joy for the coming day! I told the girls that I would give in and divulge the plan just as soon as we were on the freeway. I had them guessing for about 3 minutes and then just blurted out...DISNEYLAND!!! The screams of joy were priceless, especially little Autumn's face as she placed her two hands over her cheeks and opened her mouth as wide as it would stretch, it was a very fun moment.

The behaved themselves for the first 2 hours until we hit traffic, then Autumn became irritated and just wanted OUT of that car. After a few stops, we made it to the hotel, La Quinta, just around the corner from the land of fairytales. We met up with my mom and her sister Lorraine and my cousin Nicole, her husband and their kids. Auntie Lorraine's husband, Uncle Wayne was in the military for 20 years and was able to purchase three day tickets for a discounted fabulous price making this trip possible for us to go, Thank You!!!

"All I want for Christmas is a little power." - Autumn

Lindsey rudely informed Autumn that she cannot actually ask for "power" and I politely corrected her and said there is nothing one cannot ask for, anything is possible!

Sunday, November 27, 2011

We have a secret trip planned tomorrow for Autumn, Sage and Lindsey but we first have to make a quick stop in Santa Barbara to check her blood levels. I am hoping that they are high enough that we do not need a transfusion, but at this point, I should be prepared for one. We are due to arrive at about 9:30am at which point we will have to draw blood and then wait...for about an hour before the results return. It’s a funny thing about Sierra Vista, for some reason, they have results in under 20 minutes. I have learned that every hospital is different in countless ways. They are in the business of making money, something that I had not spent one moment thinking about in my previous life.

All in all, Autumn is doing very well. This morning it seemed as though her little head was a bit warmer than it was last night, but it turned out to be nothing, great news! She still isn’t up to eating very much, however her appetite should come back in another week or so. The girls and I spent some time this evening making Cornish game hens (Sage won one a few weeks back for the AG Turkey Trot!), stuffing, salad and bread. However, when we sat down to eat, everyone complained that the food was yucky, so not much of it was consumed.

I hope you all have enjoyed your holiday break!

Friday, November 25, 2011

As I kissed her tiny, soft, sweet hand tonight while we were sitting quietly on the sofa, I realized just how vulnerable she is, especially after taking so many drugs. She has continued the aggravating movement of twisting her wrists over and over again. It appears to bother her more during the evening hours when she is relaxing, seemingly more uncomfortable than painful. Nonetheless, as I observe the side effects of these drugs she has to take in order to save her life, I feel so helpless and defenseless and frustrated. I just want to be given the power to blink and have it all in the past! I know we are so very close to being there, so very close.

Although there was no defined “playdate” today, we had the opportunity to visit a friend of Sage who happened to have two little sisters who loved playing with Autumn, what a treat that was for her! She scampered about the house having a blast with her two new friends; it was a great Thanksgiving gift.

We are planning a fabulous fiesta for her 5th birthday and end-of-chemo on Sunday January 8th at the Exploration Station here in Grover Beach. We would love to invite any and everyone who can come!! I will send a more formal invitation soon, but it makes me feel good to have a date set…what a stupendous day that will be!!!

Thursday, November 24, 2011

We made it home after a long day at the hospital yesterday. It is good that we were there the day before Thanksgiving as it would be no fun to spend the holidays in the hospital! Today, we had a very relaxed day mostly spent at home and since most of our family was elsewhere and we were not able to commute, we decided to join the hundreds of other families at the luxurious Home Town Buffet, its one stop shop!

I hope you all enjoyed your holiday today. How nice that Turkey day is always on a Thursday in order to maximize the vacation one may have or at the very least to minimize the amount of work one has to accomplish this week!

Wednesday, November 23, 2011

Well, here we are again, on the familiar bleached white sheets covering an electric adjustable bed in the single private corner room of Sierra hospital on the eve of Thanksgiving. I suppose it's a good thing we weren't here last Thanksgiving although it's felt that long. We came in early this morning for a routine blood check. It has been about 9 days since the start of her last round of chemo, so it is not surprising that her blood counts were low, but I was not expecting a double transfusion. For some reason these transfusions always take more than twice as long here as they do in Santa Barbara. Autumn and I have been in this bed for the past 10 hours drawing and reading and watching too much TV (at the moment isn't her favorite Willy Wonka - the new one of course!).

Sage, Lindsey ahd their friend Nicole were hear earlier to join Autumn in her plight. Thankfully Nicole's mom was able to pick all the girls up to bring them back to her house to play, the desired option for them but Autumn wasn't too thrilled about the loss of her playmantes! It is so hard for her to understand why the hell she can't have a million playdates and it is hard for me to explain to her that we cannot risk infection. I just want to make everything fair and ok and just and not crazy and different and unequal. Some times are harder than others!

We should be leaving soon...

Monday, November 21, 2011

“Mommy, please can I have a playdate…”, little Autum sked today. It is dreadful to be held hostage in one’s own home, especially at the age of four. We have to be so cautious for about a week or two to make sure she doesn’t contract one of the numerous bugs going around so she doesn’t wind up in the hospital with a fever. Avoiding fevers, that’s the focus this week. She is neutropenic, the term given to someone with a very low white blood cell count. It is a very common occurrence among many chemo patients during the course of their treatment.

Lice has been on the rise at school recently. For once, there is something that Autumn cannot get…she can roll around in a bed of lice and they just can’t stick, what a weird but marvelous thought!

Wednesday I will take her to Sierra for a blood draw to determine the potential for a blood transfusion. One day at a time, but at this point she is still so full of energy! We stopped at a pet store today where Autumn discovered her love of rats, why not?! A pet rat may be good for her, she can love and care for something so small, it may be very helpful for her.

I mentioned to a friend the other day that Autumn has only about 6-7 weeks left for her treatments. “It seems like it’s been forever!” she exclaimed. Indeed it does but I know someday we will all look back on this year and wonder how we ever made it through! It is incredible to me how humans find the strength to move forward in times of trouble. How many people have encountered such turmoil and chaos in their lives and yet they carry on. The man that I had met while in Santa Barbara last week just lost his wife yesterday. If you remember the story, she is the one who had ovarian cancer but it was so late, too late and she couldn’t destroy it. I felt numb all day, I felt so terribe for her husband and their family. The woman was only about 60, still a lot to live for.

On a similar note, our neighbor just had surgery to remove 1/3 of her right lung due to lung cancer. She smoked for over 30 years, but then she stopped 20 + years ago, how disheartening! My girls have been so sweet with her as they have baked her cookies and spent some time just being with her. We really don’t know that much about her, who knew that we would connect over this type of similarity.

Friday, November 18, 2011

How nice not to have to go to SB today! Autumn spent some time with Nanie and grandpa today doing arts and crafts and watching movies, she was so lively and happy! This evening she was on fire with her level of energy and enthusiasm, so wonderful indeed. 

Mary, a Pacheco mom bought us dinner tonight from the “carne asada” fundraiser. How nice to just come home and eat and not even think about dinner, a magnificent way to end the week, thank you Mary!

We are going to have a very mellow weekend and Thanksgiving week, I hope everyone enjoys theirs!!

Thursday, November 17, 2011

What a day to rejoice!!! Indeed, we still have some work to do, but we have just finished the 20 mile marker of our marathon! Autumn had her fourth round of chemo today and she is back on the saline infusion (with the 8 pound backpack) for her last night. Oh there is so much to celebrate I can hardly stand it!

On our way home today the poor thing had to pee twice during the fairly short hour and twenty minute drive! The second time she decided to pick some flowers right off the beautiful freeway garden to share with Nanie as it was her birthday today. I love how she thinks, it is so sweet!

“Mommy, does Fluffy have a brain, maybe not because her head is too squishy!” - Autumn

Wednesday, November 16, 2011

Jeff went with Autumn today for a 2 hour chemo visit at the clinic. I brought the girls to school then taught my classes at Cal Poly and Cuesta. So far so good, Autumn seems to still be in really good spirits! I know it usually takes a week or so for the full effect to take over, but the recovery from the last week long chemo was not as terrible as it could have been. It will also be a matter of living as germ-free as we can, but with flu season here is seems almost impossible! I guess there is some idea that some bodies become resistant to chemo (is that even possible). The little girl we met yesterday had relapsed and this time the chemo wasn’t working. God how frustrating that would be, just when you think you are doing well, you’ve knocked this thing, and it comes back. Autumn’s other friend Daisy had also relapsed and by the time we met her she was almost done with her second round. So far, nothing has come back. It’s been on my mind for the past three day, this idea of relapse therapy. In fact I have been obsessing about it, most likely due to lack of sleep but it is enough to drive a person nuts!


My mom and Ken have been a wonderful, fabulous help through all of this. There have been so many times that I am in a bind and they just pick up where I leave off, no problem. I am so very thankful to have them here!

One more day…hopefully this will be the last week in the hospital for chemo forever!!!!! We’ll have 4 weeks of recovery, then three more short weeks of chemo. I just took a look at the calendar and it looks like the last day may be ON her 5th birthday, bittersweet isn’t it?

Tuesday, November 15, 2011

The amazing, beautiful girl on the right shared triumphant her story with us yesterday. She was about 15 when she was diagnosed with cancer in her foot. She had been having issues with it for about a year and no one could figure out what it was. The doctors had to amputate her foot in order to ensure removal of the tumor. Autumn listened to her story and had a million questions, she was intrigued! What a thing to go through as a teenager. She now works with the Teddy Bear Cancer Foundation helping little ones with cancer.
Lexi, a three year old battling Leukemia was our roommate this morning. she turned out to be a perfect match for Autumn. The two of them had a blast coloring, gluing and just being silly girls. At at about 10am this morning, we had a wonderful surprise from the ladies at the Teddy Bear Cancer Foundation. They had a Princess Party for the two girls! Autumn never knew a hospital room could be so much fun. They really put on a good show with decorations, manicures, sensational cupcakes and a special visit from Princess Jasmine who read fun stories to them, they were in heaven!

As we left the hospital, I was greeted by someone familiar. A trainer at the local gym was down in SB caring for his wife who had been diagnosed with ovarian cancer 2 months ago; I never knew. Her cancer has spread and she has been in the hospital since her diagnosis, a long time to spend there. The biggest question I get from children or from adults who have not experienced cancer is, “where does it come from”? If only we knew, we could prevent it. Our world is so terribly polluted that it seems it must come from that which we have been shoving down Mother Nature’s throat all these years. We know better, but we just won’t give in. Oil is king and pesticides drive the produce market so unless you are very cautious of everything, the cancer potential is out there lurking behind every beautiful bright red strawberry. When I was a little girl, they would spray the entire neighborhood with chemicals and the only protection we had was to go inside for a short while. Yeah, I’m sure that was healthy.

During the drive back, Autumn slept the entire way, she was so exhausted! We arrived home in time to meet the nurse, but of course she was not there. For some reason we have had a hell of a time with Marrian Medical, they are either really late, forget something (such as the bag of saline that Autumn is being hooked up to!) or don’t show up at all. Perhaps it is the fault of the health industry at large, it is tough to say but what I do know it that it hasn’t once worked smoothly. We waited a whole hour for this nurse to show up! The problem is that during this time, Autumn is not being hydrated, which is of big concern due to the chemo she just had. I had a long talk with the supervisor, but she wasn’t very helpful. Grrr…just another frustration and if I have to do this again, it will have to be another way, not like this.

If feels good to be back home. The hospital is another universe, one that can completely coexist within the world we already know without most people ever even entering it once minus the one time they were born into this life and not even the wisest among us consciously remembers that moment! Sometimes when I return home I feel as though I was temporarily transported to another planet not unlike ours but filled with beings with an adgenda.

Monday, November 14, 2011

We had a good morning drive. Autumn seemed to be in great spirits for the majority of the ride, singing and chatting about everything but the closer we gwere to SB, the more I noticed how agitated she became. The littlest things were upsetting to her, surely it was due to the anticipation of a long week of craziness.

When we arrived, we make a quick stop at the grocery store to purchase more of her favorite Strawberry Capri Sun drinks. She noticed a new barbie movie at the checkout line and felt she would love to have it. I haven't purchased a movie in awhile and it was on sale, so what the heck! The hospital is a great time to watch movies so in the bag it went. There is usually a good moral to each story, so it does have it's redeeming qualities even if the grandmother looks exactly like the granddaughters in the movie!

Upon arrival, Autumn was hooked up to the IV for hydration to get that process going. There are somethings I have learned to ask for over the course of this therapy and this was one of them. Each time is different, the nurses, the room, the chemo and although there is some consistency, her schedule is generally all over the map.

Last week the nurses forgot to mention that she also needed GFR test in order to test her kidney function and determine the appropriate chemo dosage. She was so exhausted from it all that she fell fast asleep right in the machine which was perfect because she has to remain as still as can be!

As we headed back up to Peds, the sailors from Navy Boat were there to greet her. How fun that was for her to see all these ladies in uniform. The one thing she couldn't understand is why their ship wasn't right here with them! One sailor brought up a picture of the ship on her phone for Autumn to see. She replied, "I bet that phone is a bigger than your phone!"..too cute!

We spent some time looking up "beautiful bald women" on the Internet this afternoon. She loved seeing photos of all these glamorous women...bald!

A bit later, Robin presented a Dress-up doll kit for Autumn to enjoy. We spent a good hour making and designing clothes for this mannequin, it was great for her age.

Uncle Bob ordered Autumn and I a fabulous cheese and veggie pizza, how delicious! It's a nice treat, especially since we have dined on all the entire menu 8 times over by now. :)
I can hardly believe that this may be the last week we will ever have to spend in the hospital for chemo!!!! Autumn and I will head out early in the morning in anticipation of an 8am arrival at Cottage. We need to begin the day early because she has to have tons of hydration before she can even be given the chemo, otherwise it can destroy the cells in her bladder and other organs. I’ll try to give her as much juice and water as she can handle while we are driving down there, but it isn’t ever quite enough. Hydration is not a terrible thing at all, the only issue is being hooked-up to the IV machine for an even longer period of time. Everything is about timing once the chemo begins. Each day is dependent on the last, so the idea is to begin as soon as possible on Monday morning so as to finish at a reasonable time by Thursday afternoon.

Cyclophosphamide, Stopside and CARBOplatin are the drugs of choice this time around. Sounds like a crazy cocktail, doesn’t it? Worry about all that organic business at home but in the hospital the rules have all been changed, it’s all about hard core chemistry. I can say that I am still amazed at what we know today, and what we will continue to find out as the century unfolds. I had a frightful nightmare the other night about sweet little Autumn. I dreamt that she had lost all of her teeth due to chemo and I was crying desperately because I thought it had damaged her delicate little body forever and she could never again live any sort of “normal” life. Oh that was too painful!!

OK, back to what needs to be done…one more long week..here we go!!

Saturday, November 12, 2011

I didn’t have to get up bright and early this Saurday for once, hooray! Due to Veteran’s Day, the entire campus was closed, no classes. What a bummer, I had a field trip scheduled to visit the local landfill. Sure, I know what you are thinking, yuck! Most every student has enjoyed it once we have gone, so it does offer something knowledgeable to many of us!

Autumn had a great day! She attended a birthday party and played for 2 hours on their ranch, what fun! I love seeing her play with other kids, it makes her so happy! In the evening we went to the drive in to see “Puss in Boots” but everyone was pretty tired by then and it didn’t go as well as it could have. On the ride home she fell fast asleep and is in bed as snug as a bug.

We have one more day before a long chemo week. God be willing it’s the last one she’ll ever have to endure and I am so excited for it to be over I can hardly stand it! One day this may all seem as though it was so long ago but in the moment it feels like forever.

Friday, November 11, 2011

Autumn drew this for Grandma Marji and Grandpa Frank's dog who just recently passed. It was so sweet I thought I would share!

On Wednesday morning we headed to Sierra for a blood draw. It went smoothly and fairly quickly which is always great! Autumn was really in no hurry to leave which I take as a good sign, at least she doesn’t hate the place!

We received the results shortly after leaving the hospital. They were great! What good news because I was becoming so worried about Autumn’s hemoglobin. She was remaining in the low 6’s and she should be above 7 at this point and certainly to have another round of chemo. The bone marrow has to work so hard to recover the damage that the chemo has done over the past 9 months. It’s all cumulative of course which means that over time it only gets worse. She also has been doing a lot of the hand flexing as the Vinchristine damages the nerves and can cause all sorts of frustrations and awkward movements within the joints. Autumn really hates how it makes her feel and she gets visibly upset when she becomes conscious of what she is feeling and doing in reaction. She is at that age where she is becoming very conscious of how people perceive her and how they may interact with her. If she isn’t in the mood, she will be very upset if someone starts to laugh. I think she believes they are laughing at her and when I try to explain that they think she is just funny or silly or they just like being around her, it only seems to further irritate her. She can seem so happy and within one second is just screaming at the top of her lungs that no one cares about her and everyone is laughing. Oh, it is heart breaking and I hardly know what to do except not freak out during those moments.

Once we left the hospital, Autumn commented that she would like to visit Loreli, a very sweet woman (as will be attested by anyone who knows her) who used to care for Autumn once a week while I taught at Cuesta. I phoned and she was home, hooray! We make a short trek to Los Osos and spend a bit of time with her and the two babies she is now caring for. Autumn fell in love with the dog who belonged to one of the babies there and proclaimed:

“I really wish I had that dog because it gives you a lot of love!”

She knows how non-judgmental animals are, they just give and do not expect much in return. Perhaps we cannot have that dog, but maybe a dog one day! I think all the girls would benefit from a fun furry creature to love.

It became an animal morning as we made a quick stop at the coffee shop to purchase a bagel and coffee and met a man who had a fabulous parrot who lived on his shoulder. Autumn wanted that bird first, before she met the dog of course!  This was some parrot; it was 18 years old and lived in Morro Bay on a boat on the shoulder of the gentleman we met, what an exciting way to live!

When we arrived home that afternoon, Mrs Dottie met us for a shaved ice fiesta! Mrs Dottie was Autumn’s preschool teacher last year and has been a wonderful help this year with everything Autumn has had to endure. Grandmother’s House Children’s Preschool has allowed us to “drop in” from time to time to maintain a presence for Autumn. She cannot attend hardly ever, but to even just be there can help with her sense of self, to reminder herself that she is a kid and this place has not forgotten about her! The school has never had to work around cancer before, so it has been a learning experience for us all. Autumn, at her young age, has been one heck of teacher for all of us!

Due to Veteran’s Day, the girls didn’t have school on Thursday or Friday. Tracy and Mark graciously lent us the use of their time share in Avila Beach for two nights!! We had a blast swimming and watching TV and pretending to be visitors in our hometown. It’s nice to see things from a different perspective, especially right where you live. It added a little pizzazz to our week which seems to be just what we needed.

Tuesday, November 8, 2011

Autumn had a playdate with her friend Rio today. Rio just turned 5 and was here with her sister the day (March 15th) that Autumn and I went to the ER to figure out what had gone wrong after she tripped and fell at the beauty school. It seems like that was a decade ago, so much has transpired since.

Tomorrow we will head into Sierra Vista for yet another blood draw to determine if she is well enough to begin another round of chemo. I believe she has accumulated over 50 beads from Robyn the social worker, for blood draws over the past 9 months and we aren’t even done yet. Remember being a kid and thinking that a “poke” was the worst thing on earth? A kid can agonize about that needle for days both before and after a doctor’s visit. To think that Autumn has to endure this on a weekly and sometimes a daily basis just seems brutal. What is even more remarkable is she really does it, with very little resistance. In the clinic, the nurses told us of one boy that is perhaps 8 years old who screams inconsolably and cries for a good long thirty minutes each time he has his blood drawn. It doesn’t sound shocking to me, that’s really what I would expect, having been a kid myself once long ago.

Monday, November 7, 2011

We had a fun day today, Autumn was able to visit preschool for just a short while to say hello and eat lunch with some of her friends. I always love going there, the feeling of innocence and youth and happiness; a sign of simple times. When kids are in preschool, life is a lot slower, naps dicate a large percentage of each day and there is down time. Once the little ones enter the institution of elementary education, it’s a whole new ball game with sports, homework and peer pressure. I need to cherish this last year of wholesomeness before it effervesces into thin air and reemerges into the unknown.

We met a little four year old boy who had long blonde hair at the coffee shop today. He explained to us that everyone usually thinks he is a girl because of his long hair and Autumn said that everyone thinks she is a boy because she doesn’t have any. We have a way of creating these images in our heads, beginning as young as they are, which form what we like, what we don’t who we think we are and what we think we want from this life. What is “normal” is varied across all continents and cultures. Why don’t we have the rings on our necks or the large holes in our ears (well, some of us elect for that here or there in Africa)?

“When I’m a grown up, I want a pink car that flies!” – Autumn Nov 7, 2011

Sunday, November 6, 2011

We had a ideal weekend. It was nice and relaxing and just what the doctor ordered-literally! Autumn had a birthday celebration with her friend Adelina at the movies, popcorn and all! Three friends celebrated her fifth birthday and they had a ball! It was perfect timing as the theatre was only sparsely populated which is always a concern with her counts remaining low these days. She has just had so much chemo given to her in the past 8 months that it has become harder for her to recover each time.



We are sort of in a waiting game right now, waiting for Autumn’s counts to be high enough to go for her last week-long hospital stay chemo. It will seem so very close to the end when we are all on the other side of that week. It has been pushed back another two weeks, so hopefully it will begin then! The holidays are coming up and it would be so lovely to have that one tough week over and done with!

A test in patience this whole process has been. Someone asked me last week how it is that a 4-year old can stand being in a hospital room that long. I honestly cannot say how she does it, but I can say that she has developed an amazing personality through all of this and she does love attention for which I am so thankful! She loves making the nurses laugh, it always makes her feel better. She has grown very sensitive to people laughing at her and not with her. She is very keen on the difference and does not entertain the former with much ease. I cannot imagine what she must feel inside, I think about it 10 times a day. The littlest situation will cause her great frustration which can lead to tears and screams that are discouraging for all. Sage and Lindsey have built some resistance to this, but they too are sensitive and can lash out at the attention and forgiveness of negative behavior that is granted Autumn through this tough time. At times it seems almost cruel to discipline her with everything she is experiencing. However, I have heard that if the parents do not maintain some sort of chaos-control with a four year old, it has the ability to lead to a terrible five year old. Ugh, there is always something, isn’t there? I guess none of us on this planet can really ever say we are bored, can we??

Friday, November 4, 2011

Finally returned, what a lot of driving for a short stay in LA! It was great to see little Camila, Adam and Alma’s little girl. She is adorable and the girls love playing with her so much that they begin to argue about who is going to hold her first when we arrive!

We returned late last night after a long peaceful drive home. The girls were so exhausted that they didn’t even make one sound the entire 3.5 hour drive!

To a relaxing and enjoyable weekend!

Thursday, November 3, 2011

Hooray!!! I can hardly believe it, but the trip to LAX proved to be successful and I can hardly believe it!

We began our journey after the girls were released from school today in SLO. We headed south at about 4pm passing through Ventura at about 6 where we stopped to eat and rest for a moment. The drive is just long enough that in the back of a smaller car three kids can drive each other batty! They were interested in seeing Camila, their baby cousin and could care less about changing tickets to some far off land.

We found terminal 2, AeroMexico and parked right across the street for $45 a minute, ha! As we made our way over the bridge and into the ticketing lines, all I could think of was jumping on one of those fabulous planes and going somewhere, anywhere! Traveling has to be the most fun one can have on this planet, there is just so much to see and do that it can never get boring.

Luckily we happened to arrive just moments before the ticketing counter was about to open (each day it’s closed from 5-8 pm, in case anyone is wondering ). There was only one single man in front of us but as fate would have it, that one person had to wait an hour to purchase his ticket and we waited an additional 30. The longest line of one that I ever did see, but that’s the airport for you! Oh the girls were going insane just waiting and waiting, Lindsey threatened to jump on the conveyer belt and send herself to another planet just so the waiting would end. I tried desperately to explain to her that life wasn’t always easy and that sometimes we really do have to wait for something good. To no avail, she was over it all and said that I was simply torturing her and couldn’t care in the least. Out of the mouth of babes, it could only be so sweet! Of course the moment we jumped into the car and exited the airport, all three girls rejoiced in our accomplishments and said the waiting was worth it…way too funny!

I was so incredibly thankful when the woman actually found dates and times in which to change our tickets that I nearly jumped over the counter and hugged her! We will be off to Costa Rica towards the end of March…something to look forward to indeed!!

Wednesday, November 2, 2011


Happy Halloween!
Autumn had to have a hemoglobin transfusion yesterday.  Her hemoglobin had been dropping, not typical of this time in her chemo cycle, but we are nearing the end and there are cumulative effects to the insane amount of poison that has filtered through her body. There is only one kidney left, a huge step in the filtration system; I just hope it can hang in there a bit longer!! Her bone marrow is working overtime in an attempt to replace the blood that is being destroyed, and it just hasn’t caught up to where she needs to be. Therefore, we will put off that intense week long chemo for at least another week. I know it will feel like we are close when we are on the other side of that week.

She is sitting with me at my desk exploring all of my “junk” spread everywhere. She found a drawing of a horse named “Chief White Cloud” that a woman drew for her while we were eating dinner in a restaurant a few months ago. This lady owns this horse and offered to bring Autumn, Lindsey and Sage out to her ranch for a ride! Perhaps that will be something fun to look forward to in the next month!

I love this time of the year, the changing of the season as well as the holiday spirit that permeates the air everywhere you go. I realize that it’s nothing like Chicago or New York, but the night are becoming a bit more crisp and chilly and I do love it!

Next year will be a whole new beginning in so many ways. As much as I am trying to live in the present, I do think about the future to a time when this could all be nothing but a memory.

Monday, October 31, 2011

Happy Halloween!!

Autumn looked so adorable in her little costume; she was a Princess of course! The most beautiful bald princess I have ever seen!! Sage was an 80’s neon girl and Lindsey was a cheetah/zebra girl.

We walked downtown Arroyo Grande with Nanie and Gramps for awhile. We were a bit late, so we did what we could and then moved on into the surrounding neighborhoods, what fun!!

Off to a blood check tomorrow to see what our next plan of action will be.

Sunday, October 30, 2011

We had a great weekend filled with play dates and fiestas! It is so easy to get carried away when Autumn seems to be feeling good and she isn’t in the middle of a heavy dose of chemo. I know that in just one short week, she’ll be in for the whole week followed by 3-5 weeks of recovery and transfusions. It should be the very last week that we have to stay in the hospital for chemo…fabulous, FABULOUS!!!!!!

Friday, October 28, 2011

The other day we were at Avila Bay Barn and a young boy, about 9 years old, walked up to Autumn and told her that he could “see her brain” and it “looked ugly”. Immediately Sage and Lindsey ran up to tell me the news and as you can imagine, I was furious. Ok, so perhaps I overreacted a bit, but I could hardly believe that someone would say that to her. Are kids really that cruel?? They know how much it hurts when someone doesn’t want to play with them at that age, let alone call them terrible names! I had to find that kid and give him a piece of my mind, I told him how terrible that made Autumn feel and how he had to apologize immediately. He squired and denied it all, but his friend gave him away and he soon caved with the threat of telling his mother. I can hardly believe how angry I felt at that moment, my stomach turned inside out.

A friend told me a story about a little boy who had cancer and was being in LA. The parents were so poor that they couldn’t even afford parking (in SB you do not have to pay for parking). They had to move their car from place to place every so often to avoid a costly ticket. While one is spending time in a hospital with a sick child, the thought of moving one’s car is hardly at the top of the priority list!! Consequently, their car was towed twice during the course of treatment. The worst part of the whole damn story is that their son died, he didn’t even get to go home with them, how cruel! I have so many tears running down my cheeks as I write this I can hardly stand it. Thinking of Autumn in her bed, what she has had to endure, and how terribly difficult it has been on so many levels. And to think that so many people have it so much harder than this. I just don’t understand how life can be so unfair????

I can only hope that we can make it through these next 8 weeks as well as we can! Autumn is so ready for something different and I don’t blame her one bit!!

Next week we are in for a blood check as her hemoglobin has still not returned to “normal” levels. If it drops any lower by Tuesday, then she’ll need another transfusion. If she looks good, then we will have to begin a week long chemo the following Monday the 7th. Minus the potential fevers, it will be the last full week we have to spend in the hospital, HOORAY!! There will still be more chemo, but not for a week long. I can hardly believe it, a marathon indeed!!!

Thursday, October 27, 2011

Early this morning, we made our way down to SB. Autumn didn’t seem to upset about this particular journey partly because she knew later that afternoon we were going to visit her friend Daisy.

Nurse Pam met us at the clinic and with her sweet and patient self managed to move us in and out of there in about 40 minutes. I imagine what the nurses and doctors must think of all of this, none of them (in peds anyway) have had a child go through this, so everything they feel is through the eyes and ears of the patients. The chemo, what must that feel like?? I can tell that Autumn has funny little things that happen after particular types of chemo (remember she has 6 types she takes at various intervals). Overall, besides being really cranky at the surface, what the heck goes on under her skin???

I was thankful today was short. We met Kate and Daisy at Los Agaves on Milpas in SB, a great little restaurant! The girls spent the whole time chatting, hugging, and being as adorable as ever! Autumn really didn’t want to leave once it was time, their connection was powerful. The last time we saw Daisy, she had no hair and was finishing her second round of chemo…as her tumor came back 2 months after she finished it the first time. God, life doesn’t seem fair at times. She was doing well even then, and Autumn had all sorts of questions as she had just begun and hadn’t lost a strand of hair at that point. This time Autumn was the bald one and Daisy has the most adorable hair ever! Short still, but in a clip and she just looked happy!

You can imagine the questions I had for Kate, I could have spent a month talking to her. She was very open and honest and I appreciated every moment of our conversation!

Wednesday, October 26, 2011

Autumn and I took a slow morning today, that was nice! We went down to the coffee shop to have a bagel (sesame, her favorite!) and happened to meet the mom of a friend of Autumn’s. Instantly she wanted a play date and couldn’t understand why the little girl was not available to play at that moment. So hard to explain to kids that life is full of so many things, unfortunately which do not always consist of play dates! Perhaps that is why adults are so often unhappy…not enough play dates.

We are off to SB again tomorrow for her Vinchristine. Just a small “push”, seems so benign doesn’t it? I am hoping we can visit Autumn’s friend Daisy, she had the exact same type of cancer that Autumn had, Wilm’s. It would be great for them to remain friends for years to come, Daisy is now 7 and Autumn is almost 5…what on earth do you think they’ll remember from these crazy times?

Tuesday, October 25, 2011

Lots of people have been commenting on how much energy Autumn has, it’s wonderful! Sometimes I can forget that she is a four year old girl, going through all the changes that apply. Earlier today, she had a play date with her friend Rio, so that made her very happy and quite upbeat for the remainder of the afternoon. When she is doing well and not having heavy chemo, I attempt to see friends and have her visit school once in awhile so she feels like herself and not like someone being punished.

The interactions that children have with one another reinforces the notion that we really do need each other, even if we need down time every so often as adults (and even as kids!). I love going to a park or any public place with Autumn, she will make a new friend in about half a minute whether it be with another adult or a kid, she just wants to have fun and enjoy this life!!



Salsa Night at Pacheco (photos provided by Lisa Jouet-thanks!)
Autumn had a pretty good day today. She was a lot more sensitive than she seemed to be yesterday which is undoubtedly due to the chemo. For about an hour she was able to visit her friends from preschool, a very happy part of her day!

Sunday, October 23, 2011

A good friend recently introduced me to a book titled “When things fall apart” by Pema Chodron. I have not been able to put it down as it seems to be one of those books that speak to you when you are in terrible need of a fine teacher! Perhaps had I read this book five years ago, it wouldn’t make as much sense as it does today, it wouldn’t touch my soul as it has been able to over the past few months.

Life throws all sorts of curve balls at us all the time. We never really know what each day will bring or what expectations we should have for any moment. We can’t help but make plans, we dream about our future, about what we would love to do or not do however we really REALLY have no idea what tomorrow will bring. If that is so, then why do we find it so difficult to live in the present moment?


As she lay her sweet head on her pillow tonight, Autumn grabbed my face and placed her tiny hands over the hair that was covering my forehead and said, “Mommy, you would look so funny without hair!”. We both giggled quietly as the other girls had already fallen asleep. Oh I love moments like those; they are ones I will remember for a long time.

Nine weeks to go, that’s fabulous news!!!

Thursday, October 20, 2011

Autumn and I made a trip down to SB today for a shot of Vinchristine. It is as quick as a dose of chemo can be which is very helpful after a long day last week. She is doing so well and for that we are so very thankful!

A little girl was in the clinic today whom we had seen about 7 months ago. Back then, Autumn had hair and this little girl did not. Today it was reversed and it set off a sadness in the girl who was there. She took one look at Autumn and burst into tears, I felt awful. She must have had flashbacks of hell chemo and just didn’t know what to do with those emotions. Autumn really didn’t know what had happened; she just turned back and began playing with another little girl who was there with her brother. You have to wonder what these kids are thinking, what they are taking in. HOW the hell they trust adults or doctors after all they have been through? To them it seems that these crazy people give them medicine to make them lose their hair and feel like shit, how can that be seen as positive?

This evening we attended a Salsa fiesta at Sage and Lindsey’s school. Autumn ran around and had the time of her life. She was adorable!!

Wednesday, October 19, 2011

The girls were sitting in the back of the car today chatting about all sorts of things. Autumn asked me if I would brush her hair today when we returned home. Sage looked at Autumn and said, “Autumn, remember, you don’t have any hair to brush”. Oh I was bummed she said that, but Autumn’s responded with a smile and replied, “oh yeah, I forgot!”

Autumn had a rough day today for some reason. I know that chemo does wild things to her body and she can react in ways that are incredibly unpredictable. She didn’t want me to leave when I had to work (new class at Cal Poly) and it broke my heart to leave her. She was crying so hard and with such intensity that I could hardly stand it. I drove away crying cursing my class and myself for having the nerve to take on something else at this point in my life. It may be good in the long run, but sometimes the short journey to the long term goal is so painful!

We’ll be in SB tomorrow…the countdown has begun! Nine weeks beginning next week!!
Autumn had a wonderful day until her spill at Pacheco Elementary! She was very happy today, she had a playdate with her friend Rio and was overall in great spirits!

While running and playing after school this afternoon, she tumbled on the corner of the sidewalk and went flying. The thud that was produced was so loud and clear that it could have only been followed by a cry and a stream of well deserved tears.  We rushed to the nurses’ station inside the office and found ice and a few band aids. She had scraped her elbow, her knee, her port, her hands and a BIG one on her forehead. Poor kid, she needs a break!

Monday, October 17, 2011

Autumn had a great day today, so much energy! For the most part, she acts like a perfectly normal four and a half year old little girl, it’s wonderful! She took her tricycle in the car today and asked to ride it in the grocery store. What a perfect idea, there are very few people in the markets during the day and she’s so damn cute no one could say no, right?  Well, Vons was great, they allowed it no problem, and no one even said a word. COSTCO wouldn’t even let us in the door with riding. New Frontiers had the best audience (and who would think otherwise?). She just pedaled along to her heart’s content, what fun!!

Sunday, October 16, 2011

Happy Halloween!!

Autumn had a great weekend! She had so much energy we hardly knew what to do with her! This is a kid that just lives her life without letting anything get in her way and I love her for it. It makes this whole process easier to endure and a lot less painful to accept. She was so active last night when the girls were trying to fall asleep that Sage announced “Autumn is nocturnal!”.

This week and next are very mellow on the scale of chemo, if I may be so bold as to actually write “mellow” and “chemo” in the same sentence, quite the oxymoron! We will drive to SB the next two Thursdays for a “push” of Vinchristine. It literally takes less than a half an hour once we are there. We can then spend a bit of time exploring in SB which will be a nice change indeed. The owner of Blenders had generously given Autumn a gift card to use while we were there however we haven’t yet been able to use it because when we are there, we are always in the hospital!

I keep obsessing about her last chemo date, it’s ridiculous really because it is what it is and it will take the time it takes to get there however some days I will go over her schedule what feels like 100 times only to drive myself crazy…ugh! Patience. I have none naturally and have been forcing myself to learn its wisdom and virtuosity! We had a trip planned to Costa Rica last summer that I was able to change to the end of December (Autumn’s original end date was October 31). AeroMexico were not very easy to deal with and they told me the only way I could possibly change my ticket was to drive to LAX and beg, so the girls and I jumped in the car 6 months ago and made that happen. I guess I’m going to try again and hope they take pity on us because we could really use an escape and there is nothing better than a vacation!!

I sense that the path that lies ahead of us will bring insight far beyond what we could ever expect to know or could even understand from our current vantage point. We can all look back in our lives and see the many places we have been and how we have all changed during the inevitable valleys and peaks along that course in our lives. This path, Autumn’s cancer, has made me realize just how short and unpredictable life is. When I feel myself getting frustrated with a situation I think about her and all she has already had to endure as a four year old and it calms me in a way nothing else could. I remember being a bit nervous about having a third child and all that it may entail but when I look at her I understand ever reason I did.

Thursday, October 13, 2011

Just got back, god that's painful! The drive is longer at night, of course it is! :)

Autumn is asleep in her bed, this was a rough day for her. She barfed twice AFTER taking the medication that is supposed to prevent that very thing! She hasn't eaten a thing today except for those goldfish and one bite of yogurt. I hope her appetite comes back tomorrow!

If all goes well, we'll have about 9-10 more weeks, how fabulous would that be?!?!?!?
We arrived early this morning to Cottage. On our way, Autumn was beginning to become anxious, I could tell because she always delays when she's nervous. It takes her a lot longer to get out of the car, to organize her things, to ask about the “what’s” and the “why’s”. After a beautuful ride along the coast, we stepped out of the car and into the hospital waiting room to begin our 12 hour journey.


"Autumn is here!" she exclaimed as she ran in wiggling her bum. She always receives a warm welcome from the nurses here who love her so. She was especially happy to see Nan today, as she is extra sweet with her and they just have a very loving way of being together!


Just before lunch, two ladies where standing outside our door whispering something to each other. They entered to explain that they were from the lunch room and were here to see if there was anything that we neede (a lot like room service!). Offering Autumn a lunch and dinner menu, they proceeded with loads of questions about her. I have never seen those specific ladies before, however they seemed very kind. The lady who seemed more in charge let me know that she was a “three-bag platelette donor”. All of the platelettes that she donates are given back to Cottage, right were Autumn has had plenty of platelette transfusion. It was fun to think that a part of her was now part of Autumn! So many people on this planet really do want to help one another, it was great to see that manifested so clearly!

In went the Vinchristine. It's the one that makes her jonts really hurt. :( It is a short push and doesn't take long to administer, but the effects last a few days. Next came the Cyclophosphamide followed by Doxorubicin, what a crazy cocktail. Her pee turned red after the last one. It looked precariously like blood, so that scared her at first.

The chemo only takes about 2 hours, but the pre-hydration and post-Mesna are the time comsumers. Mesna in a sense "cleans-up" some of the damage that the chemo has done.

There are perks to spending some time in a hospital, fist of all, one is never bored! We were visited by Abby,an airedale with very translucent eyes (cataracts). THe ladies from the “Teady Bear Cancer Foundation” also came for a visit and to bring crayons, stickers and notebooks to color. All day long the nurses are takng temperatures, blood pressure, hyrating Autumn, lots of things need to happen all the time. They all have their own way of remembering what each patient needs, as they are all different and have come in at different times of the day.

We are lying here now, waiting for her last Mesna dose then we can make our journey back home. As she is sitting her, lying on my legs, I can trace my finger over her thin shoulder where I feel the lines that are the tubes from her port that enter her blood direct, so bizzare yet beautiful is our modern technology!

"Pobre Autumn, she has to do everything, but she's brave enough to do it." - Autumn

“If I eat one more goldfish, I’m going to barf.” - Autumn

“I saw the most awesomest things in my eyes, wow!” - Autumn following her Adavan intake...what oh what did she see?

Tuesday, October 11, 2011

Autumn has taken a liking to collecting all sorts of little organisms and then caring for them. As much as I feel for the habitat and family that the little critter is leaving behind, it is terribly sweet to see Autumn so loving with something so small. With two big sisters, she doesn’t have the opportunity to feel “big” as often as I know she would like to. I can imagine it is a form of self-therapy for her.

Earlier today, Autumn found an old Easter-egg sitting behind a bookshelf with some chocolate still inside. Autumn had offered me a piece and in hindsight I should have said no but I didn’t. I ate it right up and have been paying for it ever since, yuck! Remarkable those things that are blatant can be overlooked. I cannot tell you how the girls searched and searched for those eggs Easter morning 5 months ago. When the day was over, the search was over. It was as if there could be no more eggs anywhere. The possibility had vanished.

Chuck E Cheese, what a place for kids! I resisted going there for a long time, but once I saw how excited they were about the place, I caved. Nothing like spending $60 on a pile of junk made in China, but as I’ve learned, it’s the journey, not the destination, right?? I had promised Autumn we would go the last time we were in the hospital. Besides Disneyland, it’s her favorite place to go and the promise of a trip there worked wonders in the hospital, so why not?

Autumn had her blood drawn today and her numbers looked good enough to begin chemo on Thursday. This day will be a long one, perhaps 14 hours or so. We’ll get up really early to leave before 6 am or so. Moving on, so that’s good news for now!

Monday, October 10, 2011

A beautiful day it was here in SLO, it is such a marvelous place to raise kids. Although I love big cities and all they have to offer in terms of music, culture and arts, I am thankful to be out of an environment that could be mistaken for a rat-race, that may be more than I could handle at this moment!

Autumn was able to see the shoe on the other foot today as she joined me on my lovely yearly womanly exam. She had all sorts of questions since of course, they often test for various types of cancer. I had to have blood drawn and blood pressure taken, things so recognizable and routine to Autumn. She kept asking why we were there at another “hospital” and not at one that she was familiar with. It was nice it wasn’t her for once!

Autumn went to visit her preschool for just an hour today, she loved it! It gave me a moment to find a close coffee shop to do some grading, exciting I know! She misses her friends dearly and I cannot wait for the day she can return to them!

On to tomorrow and the lab draw. It should help us have a better picture of her remaining weeks and the road map we’ll create to make it there!

Sunday, October 9, 2011

Autumn went with Jeff and the big girls to San Francisco this weekend, they had a blast! Uncle Craig recently purchased a house and they were able to stay with him, visit with his roommates and enjoy the fun of the city including a navy ship tour! I missed my girls so terribly, but I knew they were having fun, and that was wonderful!




Autumn and I are off to the hospital on Tuesday for another, yes ANOTHER checkup! If her numbers look good, then we can finally move onto this next and last phase of her treatment. It will be about 10 week long. I am trying to have patience, but a part of me is just so ready for her to move on, to enjoy preschool again, and to return to “normal” life…ha! Whatever that means!

Thursday, October 6, 2011

Oh the politics of a hospital! I suppose any large organization has its trials and tribulations, but gees, really?!? Every time we have traveled though the automatic double doors in the Outpatient Unit at Sierra Hospital, there is an unexpected surprise. I realize that they have been going through computer changes which always take time, but the main issue I have had seems to be with admin. Sure, there are 15 different people who work there on a regular basis, so it feels inconsistent, but everything is IN the computer, shouldn’t that help??

We were finally able to have Autumn’s doctors in Santa Barbara send a “standing order” to the hospital in SLO (Sierra)…which took effect a week ago. This past Monday went without major incident, fabulous! However, when we returned today, we discovered that for one, the pediatric floor was actually closed!! Is that possible? Not a sick kid in SLO…FABULOUS again! Never quite saw that coming. Lora agreed to see us, and I assured her that we were in the system, no problem, easy as pie. BUT…that was not the realized case. We made our way to the second floor only to discover that we were NOT in the system, no paperwork, nothing! UGGHHHH! I had a talk with the Director, she seemed sympathetic, but who knows. Is it because we are in a small hospital in a small town? Not really sure but I do know that it was highly unprofessional and aggravating to say the least. Maybe it’s just me, perhaps I have to let steam off in some way and this is the only way I feel I am able.

Wednesday, October 5, 2011

We said goodbye to grandma and our cousins this cool overcast morning. Autumn was so sweet wanting them to stay, to continue playing with them. I love how kids make those connections so quickly and so naturally, they seem to really understand that there is something special in kin. She asked, “will we ever see them again?”

This evening, we sat down to read a bit about Steve Jobs and his life. How awkward it was to try to explain to Autumn that he died because he had cancer, but that it was a different kind, a rare type, and that he was a lot older and more fragile than her. Oh, I know she understood that a lot more than I wished she was able to as she is as keen as a grandmother at her young age. I feel like sheltering her from the world, because it feels as though negative thoughts can penetrate one’s soul and create negativity where there shouldn’t be! I feel as though our response to catastrophe, our mental state, can have much to do with the success rate in overcoming an illness. I realize that sometimes nothing can be done, but attitude is worth something, and right now she’s got the right one!!

Tuesday, October 4, 2011

My Uncle Lloyd and his family drove up to our area yesterday to bring grandma to visit with the girls. It has been such a good time catching up with them and all of their travels, adventures and life experiences. They have lived all over the world including China and most recently Mongolia. As a family, they learn the new language of the area and have done quite well over the past three decades. They have had 9 children, three of whom are still living with them (ages 12, 13 and 16). I am sorry to say I have not kept in touch with them over the years!

Autumn wasn’t quite ready to begin chemo this week; therefore we will have her blood tested on Thursday and if all is well, then begin again on Monday. It’s a LONG day chemo, so I may spend the night on the Sunday before or just leave at 5am on Monday so that she can leave and be in her own cozy bed that night!

Overall, she has had an amazing recovery from this last round of chemo. It has been magnificent to observe that each consecutive round isn’t necessarily worse than the previous as was the case the last three rounds.

"Remember mom, red isn’t here, it’s really just pink" – Autumn’s quote of the day!

PS - Thank you Uncle Bob for my Starbuck’s card, I always love those!

Monday, October 3, 2011

After dropping Sage and Lindsey off at school, Autumn and I headed to the hospital this morning for yet another blood draw! At this point, I almost think Autumn could do it herself. The other week she asked me why we can’t just do this all at home. Why couldn’t I poke her, why do we keep having to go the that hospital? I guess in some cases, the parents do actually do this part. What would have seemed inconceivable to me 7 months ago could actually work today. Isn’t that funny, with enough time and practice, just about anything can become somewhat “normal” for good or bad?

Sometimes I will stop for just one moment, to think about all of this, to really try to take in what is happening, what has happened in the past 7 months. It scares me a bit to do this, to just stop, I’m not very good at that. It occurred to me today that moving and going are what I am good at, I can keep the ball rolling, but I’m not quite sure what to do when it drops. One cannot keep a ball in motion forever (unless of course just shooting through space as we are on planet Earth counts!), therefore I will have to stop at some point and really absorb this entire journey. I envision Autumn a teenager asking what these years were all about, what happened, what was it all like? I hope that at the very least, writing some of this down will help her understand what her life was like as a four year old with cancer. It would be nice if it could help her in any way.

We have become close with the nurses at Sierra, we especially enjoy Lora and her lovely assistant Hilary. Lora gets the job done and does it well, but she also respects Autumn, she gives her a little space when needed. Autumn still has to take a moment before each poke. Her latest request has been to see a nurse dance, she just wants to have them dance! Ha, too funny!! Most oblige willingly but a few just laugh. It is remarkable what we will do in the presence of a young one in need.

We continue to receive wonderful cards and gifts from people every week, Autumn has quite the collection going! She adores it, just marvels in all of this love from everyone. I cannot thank you enough for keeping her in your hearts!