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!

Sunday, October 2, 2011

Autumn had a great weekend. We attended the tail end of an art show at LA Live downtown. The kids had a blast running around at the top of the structure, seeing the buildings illuminated in the night sky and admiring the diverse art that was exhibited. You always wonder how a kid is going to interact with art, especially art that was essentially created by grown-ups for grown-ups. There were not many children at this event which became apparent at all of the looks they received! I love kids, the way they think, and the way they look at this crazy world! I suppose there could be no better medium that painting, drawing, sculpture or music as a form of expressing their feelings since words rarely convey what a young child really truly means to say. We really ought to create more of an outlet for children to be creative and not so incredibly tied to all these exams, homework and grades at such a young age.

Autumn is in bed now, tired and asleep. We will have a blood draw tomorrow…I’m sure she’ll be thrilled when I have to announce that. Hopefully all will look good and we can continue with this chemo schedule…to forge ahead and make it through the next 10 weeks!!