Wednesday, August 31, 2011

Mommy, what does it mean, “she lost fighting cancer”? God I had a hard time explaining this concept gently this morning, especially without flooding and losing it entirely. Kids have a funny way of asking about curiosities, just when you think they are not thinking about anything of the sort, they bring up such incredibly profound thoughts. She was referring to a little girl she had seen on a TV show the other night who didn’t make it. I tried to explain to her that this little girl had a very strong form of cancer that was too strong for the little girl’s body. I did say to Autumn that the kind she has is a lot easier to get rid of, we know more about its nature. She never really asked more than that, but I spent the whole rest of today contemplating every angle.

Autumn has been so happy, so back to herself this week, that is the good news! It has been a fabulous few days, so very enjoyable. She is dancing around the house, being silly, no sign of being tired or sick or any of that. What a treasure to relish in these moments, they are fleeting, but so is life, so I am just going to take pleasure in each day.

Monday, August 29, 2011

As we left the hospital today, there was a little girl in a wheelchair being wheeled to her car. Autumn looked and her and sighed, “Why does she still have hair”? Her interpretation of a child in a hospital must mean that they have cancer and they will lose their hair like she did. It is amazing the way in which kids identify themselves, isn’t it?

We had to have blood drawn again today, to see where we are. Her counts were good, but not as high as they would like them to be for another round of yucky chemo. She will have another week to rest; I cannot say I am too bummed about that!

Sunday, August 28, 2011

We have been having a great weekend! Today, Autumn was able to see Cailin, one of her very best friends. We meet Auntie Alex and her family, Kristine and her family at a restaurant in Solvang for a bite to eat and some fun times. I can hardly believe that all of our kids are getting so big, where has the time gone??

On Friday, Autumn spent the day with grandpa, they have such a sweet relationship! It is wonderful that she loves to visit my mom and Ken (grandpa), it can give me a little time since Autumn isn’t really able to go to preschool right now. I cannot imagine how different life will feel a year from now when she is in kinder!

Tomorrow we are off to Sierra again for another blood check, a quick and easy visit (as long as we bring our own Heparin (something needed to prevent coagulation in the line). For some reason it takes an hour to have the nurses order it up…at least I CAN bring it! If the counts are great, then we’ll move into this week’s chemo. If the counts are still low, we will wait one more week.

Part of me wants to just get this over with; this will be the fourth LONG week from a total of five, HOORAY! But part of me realizes that after this week, Autumn will have to endure weeks of transfusions and fevers, it’s terrible, agonizing! I am trying to see the light…it’s there I know it is! It is slightly filtered at the moment, but it’s better than darkness.

Thursday, August 25, 2011

After bringing Sage and Lindsey to their second day of school this year, we headed over to the hospital (Sierra in SLO)for a blood draw. Autumn was a lot more upset about this trip than I would have guessed. She cried and said she really REALLY wanted to go to Cottage. Not here, not this hospital, not to see the lady with dark mess hair (couldn’t figure out which one that was). We had a home health nurse come by one time who was a mess, and I think when Autumn becomes upset, she reverts back to feelings she had over “that” lady, and transposes them onto anyone or any situation she finds unpleasant. I don’t blame her, I’d be pretty pissed off too if someone kept messing with my body like that! Almost as if there is this creul institution of ugliness out there that is after Autumn, and she knows, she’s onto them and can’t figure out why we are all allowing for this to happen! I wish I could have kept that damn tumor in a jar, so that she could really visualize what went on and why she must endure this viciousness. She has asked about it, that attacker of her kidney, so I think it wouldn’t be the worst thing to see, I would like to see it too, and give it my two cents!

The fabulous news today came after the results of the blood draw.

Hemoglobin: 10.4 (greater than 7 is doing well!)
White blood cells: 1000 (anything above 750 is good)
Plateletes: 26 (above 20 is doing well)

We needed NO TRANSFUSIONS today! So, that’s the good news, but the other side of the equation measures the time to her next chemo, this one will be another week long one too. It should happen in a week, to give her body some more time to recover, regenerate.

Autumn was also able to see her preschool teacher for a moment today, just to say hello! She really misses her class, her friends and of course her teacher. It was a treat!

Wednesday, August 24, 2011

Autumn has been doing so well the past two days! The only difficult part has been her patience. I know her little body must feel so ravaged that it just doesn’t even understand HOW to react to something, so she occasionally explodes, over the smallest thing. It can be a towel, something she is eating, something her sister said, just about anything can cause her to become really upset in a matter of milliseconds. I know at that moment she must be feeling miserable, how I just want to take that away.

School began today for Sage and Lindsey, what a treat for them and for us. They love their teachers and they are so excited to learn new things!!

Tomorrow Autumn and I will go in for another blood draw, to see where her levels are taking her this week…let’s hope for the best!

Monday, August 22, 2011

“Oh, I feel so bad for Washington”, Autumn whispered as we played on the hospital bed playing with dollar bills and coins this morning, waiting for her blood to be drawn. “Why is that?” I asked her. “Well, he died, and that’s sad.” I explained that it is sad when people die and that President Washington lived a LONG time ago and he would be over 200 years old if he were still alive today. This conversation made me realize that she must think more about her own mortality than I may realize, even if she doesn’t say anything about it. What on earth must be inside her head? She is overall a very happy girl, but sometimes I can just see this whole damn thing wearing on her, like when will it end? As if somehow she knows she was dealt a rotten hand and just can’t understand why this is happening to her, why she is different. In the beginning the effects of the chemo weren’t as obvious, but as time goes on, she does seem more delicate and it makes every emotion more potent, more frustrating.

Mrs. Dottie, Autumn’s preschool teacher, was able to come and visit her in the hospital yesterday, it was wonderful!! She brought games to play and a picture of her whole preschool class. Last year, at the tail end of the school year, Autumn just wasn’t able to attend her class anymore. Upon seeing the kids the first time I walked into the classroom, I fell apart. It was so sweet to see all of their little faces, but it also reminded me of what Autumn was missing, she loves being social and I could tell it was tough for her not to be there with her friends.

Regarding preschool, we are hoping we can make it every once in awhile this coming year, to say hello and have the kids remember who she is! Mrs. Dottie, the director as well as the 3-year old teacher is just amazing, she is so willing to work with us and with Autumn, we are very grateful for her!

My spirits are up when are Autumn's! I feel so terrible when her little body has to work so hard to put itself back together, it is torturous to visualize. Sometimes I feel so numb to it all because it is just so overwhelming. It will end soon, a bit more than three months to go. Once we can move through another week-long chemo (perhaps in 2 weeks), we will only have one to go! I realize the recovery will be longer and more arduous each time, but one more down is ONE MORE DOWN, I’m staying focused on that right now.

Saturday, August 20, 2011

What a fabulous treat we had tonight! SloFest was in full force, how fun it was so see Itchy McGuirk (, a band that has been well know in SLO for many years. Many people were out in support of Autumn, what a fabulous feeling to be the recipient of such love. Little Autumn knew little about what was going on, but I assure you someday she will understand it's significance completely!

She is asleep right now, seems to not have a fever however I'll have to check her in a moment. It seems odd that will everything they can give intravenously, they cannot manage to find Tylenol has to be taken orally or anally, really? Not good choices for any of us really, yuck! I just hope I don't have to see her force it down again, not tonight, she is so sound asleep, and so very sweet!!
Autumn is doing so much better today! She still has a bit of an elevated fever, but it isn't as high as it was yesterday. It's a balance between Tylenol and Motrin and her natural ability to maintain homeostasis, something almost impossible once chemo starts to take effect.

We are still unsure of when we will be able to leave, but as long as she is feeling better life is good!
What a wonderful community we have here in SLO, it is just amazing!

We attended a dinner on Friday night for SLOFEST, who is holding a fundraiser for Autumn this weekend. Jack's Helping Hands is the non-profit group that is going to assist us with Autumn's financial needs as well. They are amazing, their story is unbelievable. They help so many families here in our area.

The mission of Jack’s Helping Hand, Inc. is to establish and provide community programs that enable and empower families, professionals and the broader community to meet the unique unmet physical, mental, and medical needs of special children and young adults who have not attained the age of twenty-one.

Friday, August 19, 2011

"I dont want any more Tylenol or Bactrum or ANYTHING, mommy please!" It is so difficult to hear Autumn scream those words, the agony she is feeling, the frustration with all of this, it seems to unfair! I know life is not fair, we all know that, but when the unfairness is happening to a four year old, it is almost unbearable.

I have been told over and over that this is typical, the fever are a common side effect of the chemo. Her body just doesn't have any juice left to protect itself from anything, even the slightest bacterial infection. We all know how the world is full of those lovely bacteria, our bodies are full of them, some good, some not so good. She is just working overtime right now, trying to bring her own body back to "normal".

We have appreciated the help from EVERYONE, you are all wonderful! I love texting, emails, the fabulous packages, the love, the support, the friendships, it has made what is very painful, a little easier for all. Thank you.

Autumn will be here for a few days minimum, so she won't be able to attend the fundraiser being held this weekend in her honor. I'm glad she really doesn't understand everything that is happening, because there have been many disappointments, not fun for anyone.

SLO FEST is a Cal Poly San Luis Obispo alumni based
private foundation focused on raising money for local
charities in the San Luis Obispo Area through a series
of events hosted August 19-21st, 2011

All proceeds from our 2011 event will go
to Jack's Helping Hand to benefit Autumn Cannon.

Thursday, August 18, 2011

Oh we are back again, gees, I hope this is all a lost memory of her's one day!! I cannot imagine how she must FEEL going through all of this at such a young age, I just cannot imagine.

Autumn seemed to be doing well this week, however last night she had a slight fever, about 100 degrees F. Throughout the night, she woke up 3 times complaining of a bellyache and of being hungry. She has not had much of an appetite which has caused her to remain almost the same weight these past 6 months even though she has grown taller.

Fevers are so scary. They lead to a lack of energy and an overall feeling that she is really sick. I can hardly stand to use that word “sick” as it has seemed so inappropriate because she has done so well the past 6 months! We always try to explain to her that she “was” sick, she “had” a tumor that was removed and that the doctors are now giving her medicine just to make sure that the tumor doesn't ever grow back. I am not sure that makes any sense to her, but some of this has to be explained!

We are back at Sierra, for 48 hours minimum, to make sure that her fever is not related to anything else. She is neutropenic again, she has NO immune system at all, so we have to be very careful this week, next week, until her ANC count is up again. She has been known to recover quickly, so I am hoping it will!!!

One of the things she hates more than anything else is the taste of Tylenol, isn't that something? She hates that more than her "pokes", more than being in a hospital, so crazy! I promised her that we would head out to Chuck E Cheese if she could manage to gulp down the many sugar-laden Tylenol gifts left at her dining table. She agreed, except after she took the first one she proclaimed, "I'm ready to go to Chuck E Cheese"! Are you going to get the car mommy? God I love that sense of being alive!

Monday, August 15, 2011

I love to hear the voices of my kids as they whisper to one another when they are tucked in bed, about to drift off to sleep. It is so terribly sweet and makes all the bickering during the day evaporate like spilled water on steaming asphalt on a hot summer day.

Autumn is back!! She has had a wonderful day just playing with her sisters and of course, a visit to the hospital. The good news is that we were able to go again to Sierra, the local hospital to have her blood drawn. She had to keep the rather large needle in her chest all night. It's amazing what she will do given that circumstance! She runs around and acts like she is no different that she was 6 months ago, amazing!

We are off to bed, happy that we are closer to an end to all of this madness! I know there are no guarantees, but Autumn is one strong, resilient little girl. If anyone can make it through this mess, she sure can!

This weekend, we will be attending a festival put on by friends of ours which will benefit Autumn, how wonderful!!

We will be at MoTav Friday night at 6:30 pm and then at the concert Saturday at Avila from 5-10pm. It would be wonderful to see you there!! Here is some more information on tickets and locations:

Sunday, August 14, 2011

Autumn is doing really well today! She has managed to have a reduced fever for over 24 hours. If this persists, she will be going home tonight!! We are just waiting, watching a movie and coloring...we will know soon.

Ever since yesterday, Autumn has been in much better spirits and seems to be on the track back to good health. I am so thankful for her strength! The doctors and nurses are continually amazed at her tenacity, her uncany ability to recover to quickly. How much more thankful can we be?!?

"Reserve your ER spot online"..hmmm...that's what the sign says right outside our window. What a funny thought and a seemingly unnatural one if in case you really are having an emergency! Hey, let's go online and place our name on a waitlist! :) We live in an ever changing world, don't we?

My mom and Ken were able to be with the two big girls last night, I don't know what we would do without them. They have been such a big help to us in the past 6 months. They have made trips to Santa Barbara with us, they have picked up the girls from school among many other things! We love you guys!!

Love, Autumn and her family

Saturday, August 13, 2011

Friday afternoon Autumn seemed to be a bit more warm than usual. Sure enough, she had a fever. We are at about day 8 since her last round of intense chemo, which generally notes the lowest day of her counts, especially her white blood cells, so any risk of infection is threatening. Her temperature seemed to hover in the 100.8 range, too close to 101.5, the critical point at which we need to bring her to the hospital.

This time we were able to bring her to Sierra Vista, a local hospital for her fever, so we are very close to home! That part has been nice, different than driving an hour an a half for sure! Everything here is the same but just different enough that it made Autumn uncomfortable when we first arrived.

Today she seems to be in better spirits, but this morning she was still very quiet and non-energetic, it is so hard to see little Autumn like that, it just doesn't seem fair at all. Moments like these make me so angry, so frustrated that she has to endure any of this now or ever.

Autumn was speaking with her Beloved Uncle Bob this morning, she was telling him that she had to take Bactrum and Tylenol in her mouth, she HATES doing that! Uncle Bob said to her, "I'll take it for you Autumn!" That seemed to make her feel so much better!!

We are not sure how long we will be here this time...I just hope she continues to improve!

Thursday, August 11, 2011

A long day in SB today, Autumn had a double transfusion today, the first one she has had to endure. She was borderline on both blood levels, so they decided it would make for a better weekend to have new platelets and hemoglobin. She was not happy to hear that she had to return to the hospital, but she made it through!

Her levels were:
Hemoglobin 6.8 (7.0 is usually the cutoff)
Platelets: 25 (cutoff is usually 20)

My god, it must be so tiring for her, so frustrating to endure this lengthy process. She hardly understands the concept of time and it must seem to her as though she has to do this forever! She has said one more than one occasion that she wishes she didn’t have cancer. As we lay together in the hospital bed this afternoon, she asked me again about her kidneys. She wanted to know exactly where they where and what they looked like and why her ribs were covering the region that she should be able to access to get a good feel for that missing kidney.

My Aunt Janet says that she’s a 40-year old in a 4-year old body and how true that seems sometimes. At the hospital today there was another little boy with cancer. I wasn’t sure what kind he had, but I bet if those two kids could talk like grown-ups, they would fill an encyclopedia with things they had say about it!

I think we are good for this week; we can take a little break. The one thing we have to be very careful of is any sort of infection that can cause an illness in Autumn. Her white blood counts are really low as well which means that she has a much diminished ability to fight off anything that may attempt to invade her precious body. We will lay low and wait this one out…

Wednesday, August 10, 2011

“Why did you let Sage grow-up first?” , asks inquisitive little Autumn this morning. I love what kids say, how they think and experience the world, I suppose that’s a great reason to have little ones in the first place, right? To rediscover this crazy world of ours!

Autumn has been wonderful this week, so much better than I had anticipated! She hasn’t really had any new signs of being tired and no new bruises (both tale-tell signs of low blood counts). However, we are off to SB tomorrow in the morning to check her blood counts. Generally, the counts are their very lowest 5-10 days after chemo. In the past, after a week-long chemo, she has had numerous transfusions, so that is what the oncologists expect this time around. We will see then!

Monday, August 8, 2011

We have had a mellow, relaxing and fun weekend. Autumn seems to be doing really well. Her patience has been abbreviated quite a bit over the past 5 months, I can only imagine what her body must be feeling at times. She will be doing fine, happy in fact, and one small insignificant thing seems to set her off. In a moments time, she will be crying and extremely upset about something that just doesn't seem like a big deal.

I know that what she is going through must be insanely frustrating. She doesn't understand it and most likely feels thwarted by her own body misbehaving that she has nothing left to do but cry!

Saturday, August 6, 2011

Oh she can hardly stop running, I love seeing that! She's just about to take a bath, to remove the tape that's all over her chest. She HATES tape on her body, so a bath is about the only way to gently remove it!
Aggghhh...just played mommy nurse and released Autumn of her saline/mesna bag! Gees, the backpack, with the pump weighs more than a bowling ball, too much for her to carry, so she's free!!

Thursday, August 4, 2011

Hooray, we should be headed home in an hour or so! I realize it's only been three days, but when isolated from the outside world, one day can seem more like a week! The good news is that Autumn is doing really well, it's amazing that she can have that volume of drugs put into her little body and still function as she does. She is having a blast (dare I say it!) with her sisters playing XBox...who knew? She is fairly warm right now, but that is normal since her body has been inundated with chemo for three days straight!

Some of you have inquired as to the reason that chemo must linger for so long. When I spoke with the oncologist this morning, he said that although her scan was clear last month, all prior studies indicate that a contiunation of chemo is necessary to reduce the likelihood that the tumor will return. Sometimes those nasty cancer cells fall dormant for a short while and then perk up at a more opportune moment for them, how annoying. The 9-month long chemo should take care of those misbehaving cells.

The hard part will come this next week when we have to be extra careful of germs as her white blood count will be dangerously low. Ugh, it is these times that are trying for a parent. On the one hand I want her to live a "normal" life right now and have all of those experiences that any 4 year old should have, but on the other I have to be so careful that it can make a situation unpleasant or uncomfortable...nothing less than frustrating!

Once we make it through a few more weeks, when she have this wekk-long-blast again, we will be in the home stretch! At that point, we should celebrate, at least a little...any excuse really!

Wednesday, August 3, 2011

Sweet little Autumn is fast asleep. She finished her chemo for the day a few hours ago and is now recovering. She looks so adorable all snuggled up in her bed with her soft white cap covering her eyes. I am looking forward to this week being over with. The protocol calls for 5 of these long weeks, this is the third one, hooray, only two more to go!

Sage and Lindsey are with Alex and her three little ones tonight. Alex and Mark moved to Solvang not long ago, partly to be closer to Alex's works a UCSB. She was able to pick them up today after work to bring them home with her, they can be big helpers tonight!
We had a pretty good night, with the exception of about 10,000 nurse visits throughout the night and the IV machines going off. Poor Autumn, she would be sleeping peacefully, like a little China doll. All of the sudden, there would be poking and prodding and beeping...she would wake up groggy and a bit upset! Usually she would be able to return to her soft slumber, but not always!

Accompaning the chemo comes the joyous saline bags which is the one reason we need to be in the hospital for so long each day. Autumn usually has to wear a diaper at night due to the insane amount of fluid that infiltrates her tiny body. She cannot make it to the bathroom as often as she needs to at night, so the diaper is a welcome helper. Surprisingly, last night she didnt' even need to use it, perhaps because she was up enough times to use it regularly.

We are here again today, as chemo wil begin at about 4pm and lasts about 3 hours. I am hoping we can make it home after that, only time will tell!

The big girls spent the night last evening with Jeff. He drove here after work to take them to the hotel as they are not able to stay here in the hospital overnight. They can stay late, really late, so I'm not sure what consistutes "sleeping over", but it seems to be fairly lax.

Autumn is in an awesome mood, laughing and being as silly and happy as ever, I love it! She has her beloved Fluffy Queso and seems to be content. We are on to a day of crafts and movies :)

Tuesday, August 2, 2011

We've had a long day so far, but making it through! There seem to be so many tests to make sure that the chemo is not damaging too many organs or their functions, great thought isn't it? Today Autumn had to check her kidney to make sure it wass processing and filtering correctly, something every cancer patient has to have checked, however even more important in Autumn since she only has one!

Her results just came back and they showed that the chemo was damaging her one and only kidney a bit, so they have to lay off one of the drugs for this week, at least they will need to give her a smaller dose.

Monday, August 1, 2011

Autumn had a great day today, her numbers were high enough that she needs no transfusion and we are set to move on into the end of the second round. The end is always the most difficult, with week-long chemo and hydration. Tomorrow we will spend the night in the hospital after her chemo because she will need to be hooked up to saline 24/7 for the next 4 days. Chemo is nasty stuff and it can cause the lining of the bladder to bleed among other side effects. Therefore lots of precautions are taken to minimalize those risks. Of course the benefit of life far outweighs these risks, they are disheartening nonetheless.

Target is the new favorite shopping spot for the girls, so we made a short trip there this afternoon. Each girl, with new alarm clock in hand, was excited as ever to come home and set them up, each on their own little shelf over their bunk beds. I love some of the simple things that can make them happy.