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.

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!!!!!!

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!!!

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!

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?

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!)