Sunday, July 31, 2011

What a fun fiesta for Sage and Lindsey today! It’s amazing how exciting a bounce house can still be, even when the kids are 8 and 9! I guess one never really grows out of their enjoyment.  Autumn had a great time herself; she had a few friends her age which made her feel delightfully special. Birthdays can be challenging with siblings as there is always someone left out. Even though Autumn has been having her fair share of gifts over the past 5 months, the gifts for her sisters today made her feel a bit jealous (even though there were a few for her too!). She kept asking, “When can I open my gifts?”. Kids really do live in the moment, don’t they?

This week, as I mentioned, will be long and stinky. It is what it is and we will just need to move through it, day by day. Each week’s chemo has this sort of cumulative effect which Is something I had not anticipated. These days sweet Autumn seems to have a case of insatiable sniffles. She most certainly is not thrilled with it at all, one of those constant reminders that she somehow has to deal with something different in her life.

Friday, July 29, 2011

"I don't like fish and chicken in my tummy because I want them to live". Autumn was feeling like a vegetarian at dinner tonight. Technically she is, really, I mean all she eats are waffles these days. Hey, they’re whole grain with lots of butter, but it's better than nothing, right?? She insists they are the best thing for you at breakfast AND dinner, nothing compares! I am sure in a week it will be something new, but it's tough to say! As long as she is eating SOMETHING, I am happy.

We had a fun, mellow day again today. Autumn had time to play with her friend Sophia, almost the exact same age. They had a blast!

We have a party set this Sunday for the big girls! Lots of family is going to be able to make it to this one, we are so grateful for all of your support, especially at events like this. :)

Next week will be a long and grueling one, so we'll take it one day at a time, but for now, let's enjoy this moment of peace.

Wednesday, July 27, 2011

Our friends with JD project are graciously putting on a fundraiser for Autumn in August, please take a look and join them if you can!
Autumn is having a restful week. We have been doing less and really trying to keep Autumn out of the sun (apparently one of the chemo drugs causes skin sensitivity to the sun!) and indoors with friends or her sisters.

We made it to the museum in SLO today, what a zoo! Too many kids and I begin to panic, as exposure to any sick little one can cause her to have a fever because her low low level of white blood cells. I really resist that urge to make all the girls germo-phobes but in this case it is just what needs to happen. I hope they can find a way in which to transfuse THOSE far only platelets and hemoglobin.

The hardest part is when Autumn will freak out if someone drinks from her cup or touches her food. Am I creating a child who really won't be ok sharing again someday? I try to explain to her that this is really only temporary, but that doesn't mean much to a 4 1/2 year old. Six months of this so far means that the time frame represents 1/9 of her whole life! That would be like 4 YEARS to it must not seem temporary at this point, how could it??

Monday, July 25, 2011

No transfusions today, hooray!!! I was fully prepared to have a hemoglobin transfusion today. Autumn’s hemoglobin level was at 7.7 last Thursday and it was headed down as it had been 8.0 the week before. Therefore, it seemed as though it could be low enough today to have a transfusion, luckily that was not the case. Anything lower than the 7.0 threshold causes concern and calls for the inevitable blood transfusion. They take about 5 hours and have to be administered in the hospital instead of the clinic, so it’s a bigger deal. She has had about 8 of them so far and seems to do well with all of them, but it does have its own set of risks, so there is never a shortage of worry around here!

Since we had a moment, we decided to try some bowling today, what fun!
We are headed for Santa Barbara on this cold, quiet morning. The girls have had it, they are not interested in going again. Who can blame them? We've been at this for over 5 months, if all goes well we have another 4 to go.

We usually stop somewhere half way down to put cream on Autumn's port. The cream is soothing and numbs the area so when she is "accessed" it barely hurts. She is so brave, each and every time she sits up straight, cleans the port herself and waits for the extra-large needle to pierce right through her's something else to watch! My god, you never think your own child could overcome that fear so quickly! I love how nurse Pam reminds us how Autumn is one of her favorite patients because she is so easy to access, she complains so little and wants to help so much. :)

We are hoping her counts will be high enough today to return to her scheduled chemo regime next week. Build them up, knock them down, that's the motto around the's the only way to combat the damn, hungry, ugly cancer...

Saturday, July 23, 2011

Autumn had a wonderful day yesterday, fairly mellow and just what the doctor ordered! She seems to be in good spirits and ready for the weekend fiesta we have planned for Sage's sleepover.

Thursday, July 21, 2011

Autumn had a fabulous time at the Angels game last night! I was so thrilled we were able to make it as I had my doubts the day before. She met one of the coaches who handed her an autographed ball! It was a remarkable experience for her, even though she really didn’t understand all that was going on, she knew it was special for her.

We had wonderful seats, located between third and home base, we could see everything! Sitting in the “fancy” location of the stadium, we had our own waiter, what a luxury!

There were moments Autumn seemed tired, but she made it to the home stretch, amazing! The Angels beat the Rangers 9-8, breaking their own losing streak and terminating the winning streak of Texas! Lots of excitement, it was fun to be a part of it indeed!

On our way home, we stopped in SB to have some blood work for Autumn. Gees, give the poor girl a treat and then poke her the next day, when will it ever end??? Her blood counts were a bit too low for her to enter into the intense week of chemo next week, so we will wait one more week and try again. She needs a break, so this is a good thing. She is in great spirits and seems to be having an overall good summer; I cannot believe it is coming to an end so quickly!

Wednesday, July 20, 2011

We had a tough day yesterday, Autumn was just so tired and had a bit of a fever. :( When I can actually visualize changes in her physical appearance, it makes everything feel so real and so scary. In a matter of one moment, I can go from feeling on top of the world, like we are going to conquer this cancer to feeling like we've lost, just like that, I HATE that emotions can be so overpowering!!

We are heading to Orange County today to see an Angel’s game courtesy of grandpa Ken’s amigo, thank you!!! Have a great day everyone, we love you all!

Monday, July 18, 2011

Today was a great day, nice a short! We left the house early and headed for Santa Barbara, following the beautiful California coast south as the sun made its way over the grassy hillsides. I often remind myself that this could be a lot worse; this drive could be long, drab and full of traffic which can only add to the stress of life. We are lucky, so lucky to live here and have this environment to experience. For this I am thankful.

Vinchristine, the one and only chemo Autumn had today, only takes minutes to administer, however it’s the one that makes Autumn have funny little movements afterwards. I have heard that it can make joints just feel uncomfortable which is obvious when Autumn constantly flexes her wrists and ankles.

We finally made it to dance class, hooray!!! She was tired, but Autumn was happy to be there which was so good to see. I know she misses just being a kid and although we try to make most things happen for her “normal” life to progress, there have been plenty of roadblocks.
We are moving towards the end of her second series (of which there are three), so that is something to be thankful for as well!
Love, Autumn and her family
Sage and Camila

Autumn in dance class!

The lovely model in Vegas

Autumn with nurse Deborah

Sister love! :)
Autumn with Kiki's mom Lisa, hair dying day!

Autumn with Robyn (fabulous social worker at the clinic)

Autumn and Kiki

Autumn with grandpa

Autumn's first pedicure!

Sunday, July 17, 2011

Autumn with Dr. Dan Greenfield
Autumn had a spectacular weekend! Friday we left for Half Moon Bay where our friends Darrin and Robin have a fabulous Luau every other year. What a fun gathering with friends we have known for a long time. The journey began long ago, before anyone had any children, now there are so many it’s hard to keep track!  The main focus is getting the pig into the grounds (a tradition Darrin started in his backyard in San Mateo a decade ago). There is just about everything there for kids, a HUGE pile of sand where the kids can sled for hours. Each year something new arrives and it’s always a big hit with the kids! Autumn had a blast with her sisters and friends there.

The girls had a sleepover with my mom and her husband Ken last night, something they always look forward to doing.

This morning we took it easy and just spent time around the house to do laundry and other fun household duties! Autumn sat on the floor with me at one point to just relax. She looked towards the ceiling and said, “I’m weird mom”. I wasn’t sure if she was being silly or serious so I investigated a bit further. She said she was “weird” because other kids were always asking her if she was a boy or a girl. “They can hear my voice mommy, why don’t they know I’m a girl??”. As the tears rushed down my cheeks all I could say was, “they just don’t understand how brave you are sweetie, there is no one quite like you and someday when those kids are bigger, they may understand”. Was that the right thing to say? Should I make a shirt on it that says, “I’M A GIRL!!!” for her? She must have psychologically aged 20 years in the last 4 months.

Wednesday, July 13, 2011

We had a good day yesterday, no big plans, just a slow summer day. We headed for McDonald’s to play on the play structure, something Autumn had requested. It’s a great place to play, not such a great place to eat unless of course you only order the apple slices and side salad…ha! A mecca for eating unhealthy, I know, but it sure is fun every so often.

It seemed as though everyone had a good time, however when we were about to leave, Sage and Lindsey informed me that the kids were running away from Autumn because she had told them she had cancer and they were afraid they would “catch” it if they came near her. Oh god, I became incredibly defensive, wanting nothing less than to teach those ignorant children a good lesson! I know, I know, how could they know, they are only kids after all. MY own kids may have done the same thing 6 months ago. But how could they NOT know? When you are knee deep in something so intense, one has a tendency to assume the whole world is along with you on your journey. I just felt terrible for her. Enough kids already ask her if she is a boy or a girl, she hears that one almost every day. If THAT doesn’t build character, what else can? She will be an amazing adult, wise beyond her years.

Particular chemos have various side effects, some more noticeable than others. She has been taking Vinchristine the past few weeks, fairly low on the totem pole of intensity, but chemo nonetheless. She began squeezing the tips of her fingers about 10 days ago, that area just above her fingernails. When I asked her why she was doing that, she told me that she “had to”…I assume that means it feels better. The Oncologist said that she can have neuropathy in her fingertips and it can cause a sensation that may be relieved by pressure. She has asked me to do it a few times, and sometimes when she is in a bad mood, I’ll try doing that to make her feel better.

Today we had a great day swimming with our friends Sarah, Anne, Lily and Rozy in Krista’s pool. Krista was kind enough to invite us to her house to share her beautiful pool with us, what a treat!

We love you all!!
Autumn and her family

Tuesday, July 12, 2011

An hour before we left the hospital last night, Autumn began to explain to Cailin what happened to her. "A doctor used a really sharp knife to cut me open, but I didn't feel anything because I was asleep". Cailin gently leaned over Autumn, kissed her forehead and said, "Don't worry honey". It was so incredibly precious I could hardly stand it.

Monday, July 11, 2011

Back we are, in good old Santa Barbara. We had a great two weeks, the first with Nanie in Las Vegas and the second with Aunt Janet and Uncle Bob in SB, Ventura and finally LA. We swam, ate a ton and just tried to relax as much as time would permit.

Today Autumn had a short visit in the clinic, I were aware that most likely today she would need a blood tranfusion since her hemoglobin was borderline last week. Today it measured at 5.9, below the 7.0 marker. Once it is any below that level, they usually admit her to the hospital for a transfusion. Interestingly there are some religious groups that do not allow for blood transfusions at all, unless the level may reach 1.0 or until death is apparent.

Autumn has her friend Cailin with her today along with Sage and Lindsey. She told Cailin all about the hospital, the toys and movies on the fifth floor waiting for her. :) They just returned from a short Jeep ride (still no new Jeep), the battery died, so they just pushed it along. I love how kids will just adapt, at so many levels, they just make it happen.

Of course, just as I said that, Autumn jumped up to use the bathroom at the instant Sage and Lindsey began fighting over who is going to each what once our "guest plate" arrived. Gees, it's always something, isn't it?? And it's always at the same time, energy feeds off of itself and never seems to exist alone, an attractive force, like that of gravity.

Autumn just recieved her blood, so now she will wait for about 2.5 hours for it to filter through her body. The good news is she usually perks up about half way through and tends to be in an overall happier mood. She isn't eating much, but she still seems consistent with TJ's cuties (since melted, oops!) and yogurt.

Hopefully we can make it home by about 8pm tonight. :)

Love, Autumn and her family

Saturday, July 9, 2011

We had a fabulously relaxing day yesterday after two very busy ones, it was refreshing! We sat by the pool at our hotel, ate a lot of ice cream and watched some TV, just what everyone needed! Later in the day Uncle Bob kindly offered to purchase a new Net Book for me so that I can continue to teach my online courses while in SB as well as other locations, it has been wonderful!! He promised to let me pay him back, month to month, thank you my dear sweet Uncle Bob!!!!

Last night we met cousin Ben and his beautiful wife Elizabeth traveling from Arizona as well as Uncle Adam, lovely Auntie Alma and her brother Carlos at a restaurant. The girls behaved for about 3 minutes and then began arguing about who's turn it was to sit next to Auntie Janet...oh the trials and tribulations of being a parent! Those issues seem so mundane, but they can escalate into huge, ridiculous fights that lead to lost privileges and sad moments. If only we could REMOVE that part of being a parent, can't we just all get along! We left a bit early to give the other adults a moment to have a conversation without all the raucous. Autumn was just so tired last night as well, her hemoglobin is fairly low and it really shows in her exhaustion sweet thing.

Today is baby Camila's birthday! We'll be there most of the day celebrating her first year. :)

Happy Saturday everyone!
Love, Autumn and her family

Friday, July 8, 2011

We were finally able to leave the hospital at about 7:30pm Wednesday night. Poor thing, she was exhausted, as well as Sage and Lindsey and Uncle Bob and Aunt Janet (troopers!!!). I know Autumn loves the support, but those days can just be long, there is just no way around that.

Autumn took a good long nap after all of her nasty chemo, she was more than exhausted! She was sleeping for about 2 hours and needed every bit of it! However, when she woke up, she was feeling terrible and didn't know how to express herself, I can only imagine what must she must be feeling inside. Sometimes, as weird as it sounds, I wish I could take just one dose of that crap, to really feel what she is feeling, because I have no idea, and it makes the whole process feel even more uncontrollable and all the less comforting.

Immediately she needed to use the bathroom as she had been hydrated with bags and bags of saline for the past 6 hours. While she was peeing, with a puffy, sweet face, she looked at me and said, "Mommy, I'm sorry, I didn't mean to have cancer." Oh my god, can a mother feel any more pain and saddness???? I completely lost it! There I was, balling, hugging her, in the bathroom feeling as though I SHOULD be able to do something for her. I told her over and over again that there was NOT A THING that she could have done to prevent this, it was out of any of our control. It was a terrible feeling and I wanted nothing less than to give her so much love and make it all GO AWAY! It still feels surreal, moments like that make it all feel like a dream which of course we all wish was true.

The good news is that we DID make it to Knott's Berry Farm the next day. The big girls had a lot of ideas of big scarry rides, some of which they were able to encourage Jannie Pie to join them!

Wednesday, July 6, 2011

She had two little eyelashes, one on each eye this just hanging on, almost as if it didn't want to be the last one, the sole survivor. It's about 4pm and I just noticed she has only one left, the left eyelash jumped ship, it tried to make it, but to no avail, it surrendered. There are some soft, tiny eyelashes right at the base of her lids, I cannot tell if they are going to last or if they too will fall.

"I hear they have a new Jeep" exclaimed Lindsey this morning as we left the hotel Encina to make our way up to the 4th floor. She was disappointed to hear that we were not going to the 5th floor, the location of this new jeep. We were able to make it here really early this morning at 7am. Being that this is a really LONG day, about 12 hours, it helps to make it here early so we can also leave earlier. We eventually moved to the 5th, so new jeep, but Lindsey and Sage and even Autumn for a moment were able to ride around in the old, but just as fun, jeep.

One of her favorite modes of transportation is riding ON the IV machine itself. She can really go just about anywhere in the hospital (minus the cafeteria) as long as she is attached. She always makes a someone giggle as she whooshes by on that thing! A way of experiencing in-utero in the outside world I suppose.

Having taken a variety of three drugs today, sweet little Autumn is worn out. She fell asleep about an hour ago and hasn't moved since. I cannot imagine what that must feel like, how crappy it must make her little body feel. She can't really explain what is going on however much we try to ask her. Whatever it is, it cannot be good but she is thankfully young enough that she is able to process everything one day at a time, really one moment at a time.

I can hardly believe we have been here for almost 10 hours already..if all goes well, we are going to Knott's Berry Farm tomorrow for a little treat!

Monday, July 4, 2011

Only three now...sweet little girl! She has just three little eyelashes total, not very many but the good news is that they come back fairly fast after chemo is over (so I hear!).

We had a great day today as we watched the girls jump on the bounce house, ride bikes and and scooter across the street in Arroyo Grande at the annual 4th of July party. It is so nice to have a moment when everything feels "normal".

Love, Autumn and her family

Sunday, July 3, 2011

Only five left...that's about all the eyelashes Autumn has left covering her beautiful brown eyes. She came to me this morning with mascara asking if I would put it on her. Until that point, I hadn't realized just how few she had left. She has only one eyelash on her left eye and four on the right, that's it! I did the best I could, I made that left eyelash as dark as possible given what I had to work with, and she seemed satisfied. How adorable she was, with one dark, thick eyelash and her blue eyeshadow scattered over her little nose and both eyes.

I love her and her innocence, the manner in which she can live each day without regard to her condition. It is as if she doesn't see herself as having anything wrong with her and for that I am forever grateful!

On another note, our beloved Aunt Janet and Uncle Bob came into town today. They flew into LAX then we drove to Santa Barbara to pick them up, what a beautiful day it was. It was so nice to be going to Santa Barbara for another purpose. Autumn, Sage and Lindsey were so happy to see them as was I; they mean so much to us. We are planning to spend the 4th with them at our friends Greg and Andrea’s house, complete with fireworks, b-b-que and music.

Happy Fourth of July everyone!!
Autumn and her family

Saturday, July 2, 2011

“Is that when I falled?” asked Autumn this afternoon as we were sifting through photos in an attempt to create another album. She was looking at an earlier photo of herself with hair and it was almost as if she didn’t recognize herself! It hardly bothers her at all, her baldness, but on occasion she will make a comment that reminds you she is aware, most likely just hoping her hair DOES come back and sooner better than later!

Some of the photos, I have to admit, seem to have been taken SO very long ago when they were only taken 6 months ago. How time can play tricks on us, how days can seem so long yet months fly with no concern of each passing precious moment each day can offer.

While eating at a buffet last night in Vegas, someone set off the fire alarm. Although soon we were told more or less not to worry, for some strange reason it seemed so very real at the time. Everyone just sat around (including us), determining what move to make next. We took peculiar cues from one another and the bell droned on and on. What was most interesting was the reaction on Sage’s face. She was scared. Instantly she began to plot her escape and wanted nothing less than to return to our hotel room to pack all of her belongings and remain ready for action. She was determined to do so and I complied. In the room she ran around picking up everything she didn’t want to lose as my feeble attempt to explain to her that these were just materialistic thing failed miserably. We returned moments later in an attempt to finish our meals (after all it was an ALL-YOU-CAN-EAT buffet). Sage continued to plan an recreate every scenario in which to exit that she could think of to make the situation ok in her mind. A piece of me picked up on her anxiety and I followed her down that path for a moment, what if this was really it? We could just die right here in a huge flaming hot fire, in Vegas of all places, it’s not like that hasn’t happened before, right?

Humans are so weird, aren’t we? Maybe by allowing ourselves to think the worst, we can normalize just about anything, like your baby girl having cancer. Put it all in perspective, the lesson of the year for this family at the very least.

Love Autumn and her family