Friday, April 29, 2011

So far, we have had a mellow week with not a lot of activity until yesterday. Autumn has to have her blood drawn each week to make sure that all of her various blood (hemoglobin and a variety of different white blood cells) are all high enough not to have any concern. This week she had her blood drawn on Wednesday and as it turned out, she had lower than acceptable hemoglobin levels. The accepted range begins at a level 7 and she was at a 6.4, my heart sank. It feels terrible when it seems as though everything is going as well as it can given the current circumstance. News like this, although not catastrophic, has a way of creating mental images and thoughts that can be a parent's worst nightmare!

It had been about 6 days since her 4 day dose of chemo, the lowest level of any measured blood levels is usually found by day 10. This means that the 6.4 could potentially become a 5 or 4 or even lower. This depressed level may cause too much fatigue as well as other issues if not swiftly dealt with. Therefore, Autumn had to return to the hospital on Thursday for a blood transfusion (about a 5 hour process in the hospital). It all seemed to go well and in fact she seemed to have more energy afterwards, a general rule after a transfusion. More hemoglobin equals more energy, good for her!

We will have to go to the clinic in Santa Barbara on Tuesday to see what her counts are at that point. If they are high enough, then she begins the second four day dose of chemo followed by a 2 week break. At that point, we only have to go in once a week for about 5 weeks, then again the 4 consecutive day process.

Some of you have asked if we would like some company on the days we head to SB for just one day. We would LOVE it, if you or perhaps you and a little one would like to join us. It usually takes about 4-5 hours from the time we leave home to the time we return and we usually go on Tuesdays. Let me know anytime, the company would be well received!

We love you all!
Autumn and family

Wednesday, April 27, 2011

Autumn has had a great week so far, even after the four day stint last week. We'll have to have her blood drawn today to check her counts to make sure all is well. It's the only trip she'll need to make this week! :)

Monday, April 25, 2011

My Aunt's friend Wendy ran a marathon this past weekend and had Autumn's picture on her shirt. Wendy is a cancer survivor

Some fun Easter Pictures from this weekend!

Thursday, April 21, 2011

Plan everything, then have no expectations...I guess that is a way to look at life, isn't it? We have ideas all the time about how we should live, what we should be doing, what will make us happy, but do we really KNOW what those things are? We like the idea of planning because it gives us a goal, something to look forward to, a dream. However, I have to admit that it can change, your plan can change, along the path of life and it could even be for the better, even if it doesn't seem that way at times.

The past three days in the hospital have gone much better than I could have ever planned. I have had some time to spend with my girls with little expectation of "getting things done". It has been more fun that I would have imagined!

Autumn is taking all this chemo in stride, I half-joked with the nurses that they must be giving her water because she is doing so well! I hope she continues on this path. She lacks an appetite which is not so good, but they do say it will come back in the coming week. We will have to return here in 2 weeks again for another 4 day stay, but then we are back to once a week for awhile.

I hope those of you on Spring Break are doing well!!! I have to once again thank you all for your love and support through all of this, it has been nothing less that marvelous! My friend Kristen Jones who sells Aloette products had a fabulous fund-raiser for Autumn last week. Sarah has put together a Care Calendar that many of you have so graciously been a part of to bring us such delicious dinners! My dear friend Alex, pregnant with her third child while working and moving found time to create a Pay Pal donation site for us. And Autumn's grandpa and grandma who are selling bright orange (the color for kidney cancer) wrist bands. There have been soooo many of you out there, what a wonderful community of family and friends!!

We love you all!
Autumn and family

Wednesday, April 20, 2011

"I just want to go!", exclaimed Autumn with a slight hint of frustration last night. She was done, we were here way too long. However, we made it! We made it to the hotel at about 11 and fell fast asleep. Autumn had a great night. However, she peed the bed which is one of the side effects of chemo - I sill certainly take that over the host of other side effects!

We are back in the hospital this morning for a shorter day, only about 8 hours today. Although that is still long, given yesterday's perspective, it will feel shorter!

Sage and Lindsey are having fun scrap booking (punctuated by arguments of course!) and in a moment we will walk down to the Farmer's Market they have in the hospital cafeteria each Wednesday.

Tuesday, April 19, 2011

Almost there! The girls have been scrap booking their little hearts out today at the hospital. When we first arrived, they told us we were not going to be able to go to a hotel tonight and that we would be here in the hospital the whole week...bummer! About an hour after hearing this news, the oncologist came in to let us know that we should be able to be released tonight, hooray! At this point, we have been here about 13 hours and certainly ready to go.

Autumn is absolutely amazing and handled this insane day of chemo so very well!! I am so very proud of her! Tomorrow is a shorter day in general, only about 8 hours total, so I think we can manage it and hopefully she can have another good day!
We awoke at 5:45 this morning to make our early trek to Santa Barbara. Our car was packed with clothes and crafts galore to spend 3 days together at Cottage, how fun! Autumn had to have a bunch of tests early this morning to make sure that she was "ready" to have this lengthy chemo. In the meantime we are all "scrapbooking", a great way to pass some time together and preserve some fabulous memories.

Autumn is learning all of the terminology, it is pretty cute! She is currently taking my "blood pressure" and is giving me a "flush", which occurs each time she has chemo. It's amazing how little ones take life is stride, I learn something new every day, I appreciate something new every day, what a gift! You know in a short period of time, she has had 2 major surgeries, lost all of her hair and gets shots on a regular basis, has a portal sticking out of her skin...and she still loves to laugh...god how I wish I had that sense of innocence, that incredible ability to live in the present.

"Take only Photos, Steal only Time, Leave only Footprints"
-Author Unknown

Monday, April 18, 2011

This past weekend we had a small hat party for Autumn with her friends from preschool. She was with most of them the Friday before the weekend to play a bit and have lunch as she missed them so much and they were happy to see her. You never know what other little children are thinking of, how they process something like this.

When she went to school, all of the kids showed one another their "owies" from various parts of their bodies, it was quite endearing to watch! It was a way they could all connect with Autumn, how empathetic four year olds can be! :)

Autumn seemed to have quite a bit of energy this weekend. I am sure the lack of radiation treatments for a week has been a welcomed break to her little body! We spent some time at the Bob Jones Trail yesterday and she was content to ride her tricycle for awhile punctuated by longer moments in the stroller, a sort of safety zone.

This week will be at Cottage for 4 days. Last week was relatively easy which allows for this week to be more acceptable (we can even talk about it without tears). The big girls and I will be there from Tuesday through Thursday afternoon and Jeff will stay with her from Thursday evening until Friday when she can come home. There is a hotel across the street where we have been sleeping. An organization called the "Teddy Bear Cancer Foundation" graciously offers families like ours free rooms for up to a week at a time, we are quite thankful!

Speaking of being thankful, we have had so many amazing meals that have been delivered by all of you, how wonderful it has been! I feel as though I haven't cooked for a month, what a treat! :)

Wednesday, April 13, 2011

Well...she DID it! Autumn was just amazing!!! We had just a small "party" for her as she was brave enough to just have her hair shaved right off! Jeff went first, then grandpa, then Autumn! She just sat there, calm as ever and was ready to have it gone. I never would have thought it could have been that easy.

She is so cute! Her continued concern is that people may not know who she is, they will say, "who is that? It looks like Autumn's eyes and skin and legs, but maybe it's not Autumn". How one processes something so chaotic, especially a four year old, is something I will never comprehend.

We made it to Santa Barbara yesterday for a quick chemo treatment; I wish they were all that easy! It literally takes 15 minutes and you are out the door! Next week however, we will be in the hospital for 4 days, from Tuesday to Friday. Sage and Lindsey will be with us for a few days (scrapbooking :) and then Jeff will come up for Thursday and Friday. Only one of those agents gave Autumn a hard time a few weeks ago, it seemed to give her a terrible head ache. Now that we know that, they can give her Tylenol right away.

Autumn woke up yesterday to find A LOT more hair on her pillow. When it decides to fall, there is no holding back. I brushed her hair in the morning which left a clump the size of a small lemon on the brush. An hour later, I brushed it again, only to find an equal amount had again fallen. I continued to brush throughout the day, each time removing so much hair that by the end of the day, she only had about half of her hair remaining.

This morning she really only has wisps still looks so cute because she is so little and it really doesn't bother her at all! In fact, she is ready to shave the rest off because she is constantly annoyed with the hair falling in her mouth and all over her clothes! If only we could be so accepting as adults!

Tonight grandpa, dad and Autumn will have a little head shaving party...

Monday, April 11, 2011

Little Miss Autumn had a wonderful weekend! Her cousins came for a visit which is always makes for a good time!

This week we will be in Santa Barbara only one day, Tuesday, hooray! The chemo she will have is fairly "mellow" and involves just a 10 minute push of Vincristine and then we can return home. The following week we will be there, at Cottage Hospital from Tuesday through Friday. It is a more intense chemotherapy involving hydration (due to the sulfates in one or more of the agents that can cause bleeding the bladder) to dilute the chemo over time.

This morning Autumn had some hair on her pillow and so we talked a bit about what that means to her. I brought up her friend Daisy (who is now done with her treatment) which seemed to make it more ok. It may even make Sage and Lindsey more nervous than Autumn, as they ask about it all the time! Kids are so funny, the things they ask about, what seems to matter most to them may not always be what matters to an adult.

We love you all!

Autumn and Family

Friday, April 8, 2011

We had a great celebration today at Chuck E Cheese, Autumn's favorite place indeed. She was so excited about going and managed to stay for quite awhile. Hopefully we can say adios! to radiation forever :)

HOORAY!!! Autumn's last day of radiation! :)

Thursday, April 7, 2011

Hooray...tomorrow is the last day of radiation!!! Autumn is just about over it all right now. Each day as she climbs out of bed she absolutely begs me NOT to go to Santa Barbara. "Not Santa Barbara again!" she cries in frustration. A child that small simply cannot understand what is going on, why there are so many tasks to be done, why is she not doing what she normally does, as if we as adults have any clue, or can offer any sort of insight into such a world we hardly understand ourselves.

With children, the beauty lies in their innocence and more importantly in their perspective. They do not anticipate and project the future as an adult would, they live in the present and react to what pain or happiness that is occurring within the immediate future. Adults languish in their pain and discomfort for much longer than do children.

Yesterday, Autumn was able to see her friends at preschool and what a treat that was! Her teacher, Mrs. Dottie is so sweet and caring and just made a little space for Autumn to enjoy and be creative for the short while we were there. Seeing Autumn with all of her friends was enough to break down any barrier I had built over the past three and a half weeks, I began to cry and think that life doesn't seem fair at times. Children should be exempt from the cruelty of life, they just haven't lived long enough to be burdened these occurrences. I must admit that if something like this doesn't make a parent appreciate life, then I cannot image what it would take. Life is beautiful and we cannot ever forget that, any of us. Every day is so precious and meaningful and way too short.

We are going to have a small celebration tomorrow for Autumn's last day of radiation, what a trooper!!

Monday, April 4, 2011

Good evening!

Autumn has done very well the past few days! One side effect of the chemo and radiation is that one can experience too many or two few bowel movements, for Autumn it has proven to be the former. Sometimes we will be in a place that just doesn't allow for easy access to a bathroom, but that's just a small issue at this point!

A friend took the girls and me to see their school play on Sunday, everyone had a great time. It always feels good to be out doing things; it makes life feel more normal.

We are in for a long week this week, every day we will be heading to Santa Barbara. However, the week after we are there just one day! It's a "light" day for chemo and for that I am thankful!

Again, we cannot thank you all enough for everything that you have done and continue to do for Autumn as well as her family. This is a wonderful community to be a part of, we will be forever grateful!

Friday, April 1, 2011

Autumn had a great day today! We made it down to Santa Barbara for an early morning radiation appointment. She is sure in the habit of knowing what to do and what is expected of her during each treatment. I know that visualizing her friend go through the exact same motions has given her perspective (undoubtedly the word of the century!) on what is happening and the knowledge that she is not alone.

Next week we will have one more week of visiting SB every day for radiation appointments. She will have chemo again on Tuesday and then again on the following Tues. Thereafter she will have one four day session of fairly intense chemo which is monitored closely by constantly checking her white blood counts to make sure her immune system is able to handle the attack of the chemo.

We are taking it day by day and so far so good.

We love all of your comments, phone calls, emails, texts and fun things we receive in the mail. She feels like a superstar with all of you in her lives!!! Thank you so very much! :)

Autumn and Family