Friday, September 30, 2011

Oh I just looked at some photos of Autumn with her hair, it made me cry! I sort of feel as though she has been robbed of her 4th year of life and if I think about it too much, it makes me really frustrated even though there isn’t a thing I can do about it. Of course while I am sitting here writing this, she is dancing in the background, wiggling her bottom and acting as silly as a four-year old can be! Who am I to judge? Perhaps since she doesn’t know any better, she cannot obsess about it not being what it should be.

We met a very sweet lady named Patt yesterday while in Trader Joe’s. She came right up to Autumn to tell her a bit about her own battle with cancer over thirty years ago when she was only 18. The doctors told her she had 6 months to live but she is alive and doing very well today! We went to Mexico to try an experimental drug at the time (not sure what that was) and returned cured! She told Autumn that she lost all of her hair too and not to worry, it all comes back! Again, it’s the way we are with one another in these trying times, why aren’t we always like this??? Autumn loves the love everyone has shown her, it is truly amazing.

Thursday, September 29, 2011

Autumn had another great day! We had to visit the hospital, the local one, which was a fairly painless process this time around. The blood draw was an attempt to determine the potential need for yet another transfusion. She narrowly escaped!

Hemo-6.7 (but didn’t change from Tues, perhaps going up!)
Platelets - 34K (need to be 75K for next chemo round)
WBC - 1.1

Hopefully we will have a great weekend! We are headed to LA to visit Adam, Alma and Camila, so sweet she is! My girls just love seeing their cousin; she’s like a little doll to them.

Autumn’s quote of the day:
“You have to get all of the “means” out, and then you won’t have any mean left”. Mean referring of course to “meanness”…not a bad idea! After a long discussion regarding “bad people”, Sage had said earlier that everyone has a little bad in them, and this was Autumn’s clever response.

Wednesday, September 28, 2011

Autumn had a pretty good day yesterday minus the trip to the hospital! She was so bummed to learn that we had to go, even for a blood draw!

I remember how much that used to scare me, a poke in the arm, the thought of a needle. It’s enough to keep any kid awake for hours the night before in terrible anticipation. Autumn has to deal with that EVERY week, sometimes everyday within that week, ugh! She isn’t old enough to understand that she only has 10 more weeks of this stuff, she must think it is her new life and nothing less.

My father had diabetes from about the age of 16. He had to give himself insulin injections twice a day, every day, for the rest of his life. When I was little I thought that was so scary, such a hard thing to do forever for anyone. I thought to myself, “If I have diabetes one day, I too will have to do what my father does, everyday. I wasn’t sure I could have handled that as a child, it seemed so daunting.” I can’t forget those feelings, those emotions, because I know that Autumn is sensing that every day and may not always know how to express herself. She has a tendency to get wildly frustrated at the drop of a hat with those most near to her heart which can be so difficult for any of us. Sage and Lindsey can become very aggravated with her which makes matters worse, but they just don’t have the skills to deal with what is happening (I talk as if I do!).

I went to a meditation group last night and all I can say is that it was very calming. It is something that I have never really spent a whole lot of time focusing on, but it seems that those who do really benefit from what is has to offer. Raising kids is never easy as any of us know, but sometimes I just don’t feel as though I know what I can do to ameliorate particular reactions to stressful moments. Perhaps in meditation I can find a level of peace that will allow me to move along a path of lesser resistance, to find tranquility in trying times, perhaps…

Monday, September 26, 2011

“I like laughing,” exclaimed Autumn this morning, “it takes all the yucky away!”
It could not have been better stated, I love that little brain of hers!

Autumn and her friend Kiki were staring at “The Kiss” by Gustav Klimt, one of my most favorite paintings. It was sort of an old, crummy copy, but there is hangs on the sullied wall in the small fish-bowl room at the Kreuzberg coffee lounge in SLO. The girls were giggling in amusement as they lay side by side on the soft pillows down below. “Why is the girl sitting so close to the edge?” one of them asked. To them, it seemed the girl in the painting would fall off the edge of the cliff she appeared to be balancing on while kissing the boy. It grabbed their attention for a good 3-4 minutes, quite a long time for a couple of 4 and 5 year olds!

Sunday, September 25, 2011

We have a fabulous weekend! Autumn, Lindsey and Sage had a sleepover at Nanie and grandpa’s house as they do every other weekend. I am so thankful to have them close; it has made the many transitions in our lives in the past year a lot less stressful.

Autumn has been feeling so well, I am ecstatic! I wasn’t sure how this recovery would go since the last one was so tough for her. It just goes to show you that you cannot really anticipate each week, it has been across the board!

My Uncle Bob and Aunt Janet teamed up this weekend in Chicago to have a garage sale fundraiser for Autumn, how sweet of them! Thank you Murphy’s and everyone else involved!!

Grandpa Ken & Nanie worked so hard sell so many of those orange bracelets that I have seen so many people wearing! The money that was donated was placed into her college account, what a treat (as any of who had to pay for college on their own knows!) that will be for her later on!

We wanted to mention the names of those who were so generous in donating their time and resources to helping SLO Fest to get bigger & better:

Doug Groshart Gannon Tidwell
Jason Fuller
Rope Eddy
Gary & Tom Caesar
Photographer Brian Long
Jeannine Palmer
Frank Sherfey
Brian Hanley
Tim Norian
Madison & Tucker Tracewell
Jackson Shaw
The JD Project
Truth About Seafood
BGA Productions
Kip Stork
Rocky Logue
Jody & Myles McCormick
Tad & Kim Edwards
Molly Tuttle
Mothers Tavern

All of our family members who helped in any way they could We also wanted to publicly thank all of those who made generous donations to Autumn:

Castle Rock Vineyards
Anthony Vineyards
Garza Contracting
Pacific Irrigation
GT Financial
Tracey Chance CPPI, Inc
Dan Drake Enterprises, LLC
Jims Supply Co., Inc.
Berchtold Equipment
Co. Kern Machinery
Hub International & the Caesar Family
Wallace Group
Prime Time
J.Belsher Creative
James Strachan
Rope & Vin Eddy
Timothy Norian
Chad & Stephanie Dempsey
Roger and Kulli Newton
Eric Bowman
Joseph Danna
Joelle Orton-Cartnal
Alfred Trudeau
Lisa Gonzalez
Teresa Campbell
Sarah Maggelet
Edward Maloney
Malea Rose Walker
Jason Bell
Jane SugstadBrian
Victoria Hanley
Max Flaming
Julia and Kevin Bricklin
Tim & Kathy Prestage
Peter & Raquel Ritt
Gannon Tidwell

All of this generosity has allowed for us to live a little more peacefully, it has allowed for Autumn to have some of those small pleasures in life! We cannot thank all of you enough for taking her into your hearts and loving her sweet little amazing self!!!

Friday, September 23, 2011

Autumn was so excited to have her friend Rozie over for a playdate!! She has been missing friends terribly and I have been trying so hard to make sure she doesn't get sick, or even possibly infected by anyone, tortuous for a mom, for any parent!

Uncle Bob is having a garage sale this weekend with friends for Autumn, how thoughtful and kind!!!

This is Personal.....A Benefit Sale for Our Grandniece ..... Autumn ....
Saturday 9-24-11
9:00 AM to 1:00 PM
A Multi-Family Sale at the Home of the Murphys
1019 Wisconsin Ave
Oak Park, IL 60304

Thursday, September 22, 2011

Exhausted…we spent a long time today waiting and waiting. Something kids and adults alike are really good at, ha! If patience is a virtue, then Sage, Lindsey and Autumn are all goddesses! I cannot believe how many hours they have all spent in the confines of a hospital. It has become second nature to them now, as we move from school, to the hospital, to dance class, back to the hospital. It’s almost like a second home (yikes, not really!). At their ages, I only remember being in a hospital once, when my brother Adam was born and it was short and sweet, so I have nothing to compare this to, I am often at a loss as to where the minds of those girls can go, the deep trenches of reality that they have had to experience over the past seven months.

Try to see a little bit of yourself in everyone you meet, it’s the only way in which we can ever truly learn to be non- judgmental. :)

Wednesday, September 21, 2011

Autumn spent a lot of today with her grandpa Ken and grandma Nanie, she loves being with them and how wonderful that is! I began teaching a lab at Cal Poly today (terrible timing, but I felt I should try it!) and it went well enough! Weeds ecology with a ton of ag students, unlike anything I have taught before, so that will certainly make it an exciting quarter. 

Autumn seemed tired tonight, and went to bed early. We will be at the hospital tomorrow for a lab check and most likely another transfusion.  She’s a trooper and is really getting through this all.

Although it is much easier, lately is seems so strange to have moved a lot of our lab work to Sierra because we are a bit out of touch with the nurses and oncologists in SB. There is some kind of connection that you make with the people who are saving your daughter’s life and I’m not sure I was ready to give that up. Life is full of changes, LOTS of them, most of which are out of our control but that doesn’t stop us from trying!
Autumn has done so very well these past two weeks recovering from her intense chemo week. I just looked at the calendar and if all goes well, she may be seriously done with this in 10 weeks!!!!! I cannot believe it! I know, I know, one has to wait five long years to be considered “cured”, but at this point, living as though for ONE week will be so very nice.

We spent some time at the park today while Autumn flew around in her new skates, she loves them! It does seem as though we cannot go into any kid-like setting without someone’s child making a comment to her regarding her sexuality, who knew HAIR defined us so much! This boy was only about 6, very friendly, following Autumn everywhere in her skates. At one point she took a break to drink some juice and removed her helmet. Boy, this kid couldn’t stop asking questions at that point…and staring, poor Autumn just wanted her helmet back on! He went on about how she looked like a girl but seemed now like a boy..uuugh….grrrr..I know it’s life, but I swear, are we that uneducated about cancer? Maybe we shouldn’t be or maybe I’m just so sensitive that I cannot imagine life any other way. Either way, Autumn is a tough cookie, after hearing that 100 times, she has to have some thick skin!

I finally told the boy the whole drill about cancer and medicine and losing hair. He seemed somewhat interested. My last comment stated that in three months, she was going to begin to grow her hair, that it would look like his at first (short), then grow longer and longer until it grew past her butt. He laughed and laughed…who knew? Humor is a fabulous antidote!

Monday, September 19, 2011

“See, that’s why I didn’t want to have cancer, it makes my head have a sunburn!” The words just fell out of her mouth as we were taking a walk along the famous Bob Jones trail. If ONLY I could see life like that, so simply, without such judgment. It is what it is and nothing less.

This past weekend we watched “Soul Surfer”, an amazing true story of a teenager girl who lost an arm to a shark while doing what she loved more than anything else in the world, surfing. She overcame her incredible setback to win first place in a surfing tournament and is an inspiration to us all! I cried and cried and thought of all of humanity, how many stories have been lost that are so similar? How each person on this planet could help one another, although we rarely are able to see those opportunities. I think we all believe that everyone has it together, that somehow it’s a whole lot easier for the person next door, but it may not be. It’s like the guy at the hospital last week, just one look at Autumn and he felt this level of love that is strong enough to melt even the toughest of hearts. It’s in there, in each one of us, but somehow it takes really difficult situations to see it manifested.

Friday, September 16, 2011

Autumn had a great day today! She spent the day with grandpa and Nanie, she loves having time with them by herself.

She seemed a little tired at night, I am hoping we can stave off another fever for a bit longer, it seems a terrible drag to return so soon to the hopsital!

Off to a great weekend!!

Thursday, September 15, 2011

“No, no, I don’t want to go back there!”…cried Autumn moments after receiving the phone call this morning that we would have to again return to the hospital today. We had been earlier in the day to check her blood counts, decided she seemed so full of energy and so symptom free, why remain accessed? The nurse Lora removed the needle and we were on our way!

We happened to see the pediatrician at a local coffee shop where Autumn wanted to go and paint with her new kit. She was the one to deliver the bad news and Autumn yelled out, “why are those doctors so mean! I don’t like any of them”. Oh what will her view of them be when she grows up? After all, they are supposed to HELP us, but what she has experienced are the pokes, the medicine, the long days at the hospital, for what appears to her, an asymptomatic little girl. It’s a tough one to explain.

Autumn had both a hemoglobin and a platelet transfusion today, she is doing well and sleeping at the moment.

While I was at the hospital, some stopped us and said, “That little girl is very special, I can see it in her, I just had to stop to let you know.” I love how people can be so real in front of Autumn, how what she is going through has touched so many live. I cannot believe how much I have grown just watching her deal with all of this in her life.

Wednesday, September 14, 2011

Autumn is still her little cheerful self, it's amazing! I am almost wondering if they just forgot to give her the chemo! With the new tubing system they have, perhaps it just never made it to her port, it evaporated into thin air! She is amazing!

The real test comes at about day 9 or so, that's when she will be T the lowest hemoglobin and platelet levels. Tomorrow we’ll go in for a blood test, just to see where she is. She doesn’t have a ton of new bruises and she still has plenty of energy, so I am hopeful we won’t need a transfusion!

Tuesday, September 13, 2011

I was greeted this morning with the sweetest kiss ever! I love that little bug, I am so happy she is in good spirits.

Monday, September 12, 2011

I love the adoring fans that Autumn can collect throughout the day, it’s quite amazing! From little babies to grandparents, she delights them all!

We went to Morro Bay today in search of a good used cell phone. We ended up spending a few moments in the local coffee shop eating bagels while taking pleasure in the beautiful fall afternoon. Within a few minutes of seating ourselves, Autumn had a crowd! The first gentleman sat next to us, a longtime friend of the owners, wanted to ask Autumn all about herself, she loved it! The next two came along to do more of the same and within 5 minutes she had them all around her, conversing with each of them about various topics. Just before it was time to excuse ourselves, she wanted turned to each of them to invite them to her fiesta after all her chemo is done. How CUTE is that?!?!? Only a 4 year old could get away with something like that..ha! I reveled in her happiness, her cheerfulness, her ability to just live in the moment, it was grand!

Fun nails!

This was sooo sweet! Larkin, a friend of Sage and Lindsey wrote this at school about 2 weeks ago. It says, "If I could have just one wish come true today, I'd wish my friend Autumn to get better from cancer".

Autumn at her and her sister's Lemonade Stand!

Sunday, September 11, 2011

Autumn has had such a great weekend! They spent some time at Nanie and Grandpa's house last night and had a blast. She still has so much energy, I love seeing her so in the moment.

My veggie car died this weekend...therefore we spent sometime today looking for another car. It's a somewhat necessary evil, one that I should live without, if only I could!

This week we will have a few blood tests, possibly followed by one or two transfusions, but if she continues with this amazing energy level, then life will be so good for her. :)

Saturday, September 10, 2011

Autumn had to return on Friday for a short stay in the clinic, her last round for this week...agghhh, I am so happy for her!

She was attached to SOMETHING for the past week, at home it's a backpack that is fairly heavy. About an hour ago, I played mommy nurse and flushed her and took out her needle and she was a happy girl!!! She spend the next hour running around and yelling, "I'm free!"

To one more LONG week of chemo...

Thursday, September 8, 2011

We made it through last night without too many issues :) Autumn has just finished with her third dose of the week and we are about to leave for home where she will be connected to a backpack of saline for the night. One more day of chemo tomorrow, then a few weeks for resting, transfusions, etc...but we can do a lot of that at Sierra, much closer to home.

We have a sweet little roommate today. She is in for her appendix. Autumn has found her incredibly interesting, to see someone else going through something, just a little one at the hospital. She has watched her every move!

Wednesday, September 7, 2011

The nurses came in last night to let Autumn know that she had been voted the Most Fun Patient of the Hospital, that was sweet and made her feel better. We had a good night last night, Aubrey was our nurse and was as quiet as she could be throughout the evening. Changing bags, taking blood pressure and temperature at various times makes it difficult to have a good night's sleep, but it's not forever!

Autumn wanted her nails painted yesterday, so we create a little nail salon for the afternoon. She has toes that look like pink cheetahs!

Autumn loves taking baths, today she ran naked down the hall. Well, sort of ran, as much as you can "run" when one is attched to a six legged machine on wheels! The nurses thought that was a riot, but she loved that bath, perhaps we'll take another one today just for fun! She is asleep now and seems to be doing well. During the night, she'll have to pee about 5 times due to the saline that she is constantly taking in, what seems like a few liters of water each day! That six legged friend will follow us to and from the bathroom throughout the night, unplug it, wrap it up, carry little bug to the bathroom, place the hat (to collect the pee), wipe, bring her back to bed, plug the machine back in the wall, hopefully fall back asleep. Memories of newborness are coming back...

Tuesday, September 6, 2011

It was a long drive to Santa Barbara this morning, as anyone would guess, she absolutely hated the Barium-Banana shake, who could blame her? I tried just about everything to get her to drink what little she could, just to make the scan process as quick as possible. Not much went down, but it was enough to stain what needed to be illuminated.

Nurse Deborah had to take a bit of blood this morning to make sure her numbers were high enough (stable enough) to go for this round of chemo. They were good enough, so that just means that next week, all will plummet...ugh! But the chemo is doing it's job, that's what matters.

The playground of the mind can be a tortuous place, or it can be beautiful, I suppose it depends upon how much energy is given to any particular thought. That hour that we spent waiting for the results of the CT scan were rough, I believe I imagined every possible scenario, from finding a watermelon sized tumor to 12 in various locations, god that's ugly!

The good news...there was NOTHING on the CT scan, hooray!!!

We are now in our usual place on the fifth floor of Cottage. It's actually sort of nice to be back here in a familiar place, as we have been going to Sierra for the past month with fevers. It feels like we are back on track with the chemo schedule, hopefully not too much longer, I can almost taste it!

Monday, September 5, 2011

The cracks of the earth are what deliver the water to maintain all life as we know it. The imperfections of life are what make it real and unique, each one of us are human, we have a commonness that sets us apart from any other creature, we each have a story. The older I become, the more I feel this reality, the more I understand that we have all lived through something.

Autumn and I are going down to SB tomorrow, bright and early for a week-long session of chemo. She is in such a fabulous, healthy place at the moment and I feel like a terrible mom allowing for her to be taken in by what must seem to her, savages. I know, I have to allow this, there is no other way, but it seems as though there could be!

At the breakfast table tomorrow, all she can have is this crappy, chalky fake-banana flavored drink to prepare her for her cat-scan. I’m sure she’ll just really love that. She was sent what we thought was a “gift” from the Radiology department last week, inside the nice brown box was this unfortunate gift. She went around all day saying, “that wasn’t a very nice gift”.

Before we set out, I’ll put the numbing cream on her port to get her ready for her poke and everything else she’ll have to endure. She must feel like she is being tortured for no reason, why her? I can’t really ask that as I know there are so many other children in this world that wouldn’t even have the chance to fight this, let alone win. Nevertheless it feels awful to put her through any of it. When we make it through this week, there will only be one LONG week left, punctuated by many weeks of recovery, but we are getting there…one day at a time.

Friday, September 2, 2011

Continuing to love this time with Autumn. Her cousins Frankie and Raquel are in town visiting from southern CA. They all have a blast together, is is remarkable to witness, I can almost visualize them as young adults sitting in their own living rooms, remembering their youth. My Aunt Lisa has been fabulous about making sure that they come to visit us on a regular basis over the years to instill a connection between the cousins that would not have otherwise been possible.

Grandpa spent some time this morning with sweet little Autumn bug for awhile, she loves her special time with him. :)

Autumn has to stay hydrated all the time, it has been challenging since she doesn't love to drink much of anything. My mom had purchased a Capri Sun that she just loved some time ago; she loved it so much that she drank most of the box in one day! I purchased 3 boxes the next day and from then on, she was a hydrated little drinker! Capri Sun...who knew?