Wednesday, March 30, 2011

We had a good weekend, Autumn seemed to do well!

Monday morning we learned a bit of news that wasn't as reassuring as we would have liked. As with most tumors, a piece of each one discovered is reviewed by a local pathologist, then again by a panel of pathologists usually specific to that particular type of cancer.

When the pathologist here looked at Autumn's tumor cells, he determined that she had a stage III (due to lack of spreading) Wilm's tumor with a favorable histology. Favorable because they found something known as "focal anaplasia" instead of "diffuse anaplasia". Anaplasia has to do with the DNA in the nucleus of the cells found in some areas throughout the tumor. This DNA has replicated many times without dividing the cell, so it's sort of a messy mass of genetic ugliness in the middle of the cell. Here at Cottage, the pathologist found ONE of these within the 20 slides that they created from the tumor. At the Institution, they reported finding three. If there is more than one, they call it "diffuse anaplasia" instead of being focal.

Intuitively, it seems that if there is one, there could always be more. We were hoping of course that it would be the ONLY one they would find, but I suppose that wasn't very likely.

A tumor with this diffusion doesn't respond well with the DD4-a treatment Autumn was originally scheduled to take. Therefore, she needs to be on another, more aggressive, regimen called UH-1. It has 5 total agents instead of 3 and the time frame in which they are given is a bit different. Each week consists of at least one day, but some weeks will have 4 consecutive days (each time is only 1-5 hours), but there are about 5 of those throughout the 7 month period.

They also extended her radiation one more week, only to the area that was affected (instead of her entire abdomen like they are doing this week).

I suppose one way to look at this is being thankful that we KNOW what it is and there we are getting the best chemo that currently exists for this tumor. It's never fun to hear something like this in the first place, and then to be told it's a bit worse than we thought, but what can anyone do? We are in this life right now. People are having a hell of a time in places like Japan and Libya. Life really may not be fair for anyone, but we are given what we are given and life moves on. Autumn is such a strong amazing little girl, I can hardly believe it myself when I look at her.

She just had her first treatment of this new regimen about an hour ago. They gave her 3 of the 5 agents. One of them gave her a headache like no other poor thing, but the other two went quickly and without incident.

I can say it has been fun passing a little time alone with her, no sibling rivalry and lots of love. THAT I can take anytime!! :)

Saturday, March 26, 2011

Well, we have seemed to have made it through our first week, albeit short, Autumn did very well. I am sure the hardest part is yet to come, but one day at a time, right?

Autumn had the amazing opportunity to meet another little girl JUST like her. This little girl is named Daisy, she is about 6 and a half years old, and she also had a Wilm's tumor.

Daisy is on her last week of treatments, so it was wonderful to have an idea of the "outcome" of this type of cancer. She had the exact same markings as Autumn (for removal of the tumor, placement of the portal as well as for radiation), they compared scars...battle wounds...for such young girls, they were both pretty amazing! They have already handled more than most adults and they take it in such stride. Sage and Lindsey are going to meet this little girl next week.

Autumn was also able to see Daisy without her hair. She had lots of questions about that, and I am sure she will have more as time goes on. All of this is new (as I am sure it is for ANY family going through this). A parent is never really sure of what the right thing to do may be, but there are always lots of lessons to be learned, that is for sure.

A friend sent some great books on cancer, siblings and being sick in general. It helps for all the kids in a family to have an idea of what to expect and to see that they are not alone.

Autumn continues to do really well. She has even had the chance to visit with some friends! She really misses preschool and hopes she can return soon!

Thank you again, EVERYONE, for all that you have done!! The dinners are just amazing, we are being spoiled! :)

Thank you again for all of your thoughts, prayers, donations, time, encouragement. We appreciate every bit of it.

To a beautiful Sunday!

Autumn and family

Thursday, March 24, 2011

Autumn went in for a second surgery yesterday at 1pm. It was to remove the 14 staples (Autumn called them her 14 babies :) and place her portal for chemotherapy. This time the procedure was a lot shorter (about 1 hour) than the removal of the tumor (almost 3 hours). She is such a trooper, she did so well!

She was in a lot of pain when she first woke up and the nurse on duty at the time had refused to give her any more pain medication (god knows why!). A second nurse followed shortly to explain that she MUST have pain medication, as it was almost protocol! For some reason she resisted again and finally gave in and gave Autumn a little something to take the edge off, finally!

After the surgery, a nurse came in to give Autumn her first chemo treatment. It is so strange watching them put this insane chemical in your baby, it hardly seems real. It felt as though Autumn was part of a weird experiment being conducted by aliens just to see what would happen. As a parent, you just have to give up internal resistance and find a way to accept what is happening, but it seems so unnatural.

The good news is that she seems to be doing so well. My mom and I stayed with Autumn last night in a hotel across the street from the hospital because Autumn also has her first radiation treatment today. She only has 7 consecutive days worth of radiation instead of 10 (we are thankful!). Each treatment only takes about 20 minutes and the radiation itself lasts only seconds.

Every Tuesday for the next 10 weeks, Autumn will have her chemo treatment She would love all of your thoughts and prayers on that day especially. She may get sick from it, she may do well. The doctors said she can even return to school if she is doing well, amazing! We have been told that the hair loss is fairly quick, it begins in about a week and most of the hair falls out within 5 weeks. I worry about how she will react to all of that. She has already had a lot to deal with and this in just one more hurdle. I am open to just about any suggestion regarding her, her siblings, any advise one can give us to help with the understanding and compassion.

We are so very thankful for having ALL of you in our lives, it has made this entire process more bearable. Thank you for being there for us, we love you.

Autumn and her family

Monday, March 21, 2011

Autumn had a wonderful night last night. She fell asleep at 7pm, poor thing she was so tired! This morning she ate a bowl of cereal (hasn’t had that in awhile!) and some juice. She seems to be doing really well after her surgery almost a week ago!

We took Sage & Lindsey to school and then headed to Santa Barbara to meet with Dr Weisenburger (the Cottage Hospital Radiologist). He had to fit her for her 10 consecutive days of radiation which should begin no later than Monday. There are some side effects such as nausea, but the good news is that she is so brave and still that they won’t even need to drug her! They would have to use “Propofol” among other drugs, what a mess!

We will have to return on Wednesday in to have her stapes removed and her “portal” placed. It is a small device that will have a tube that is directed into her vena cave so they can administer the chemo as efficiently and painlessly as possible. It is all under the skin (it will stick up a bit) which means she can swim this summer and do all regular activities if she is healthy, good news!

Sunday, March 20, 2011

We finally returned home today! My mom and her husband Ken were kind enough to clean our house, do our laundry and wash our dishes before we returned, thank you!!

We are taking it slowly today. All the girls are asleep right now and we are preparing for the week. I will return tomorrow to SB to have Autumn fitted for her radiation and then Wednesday we will return to begin chemo.

It's a long road ahead, but already I have heard of three personal stories of teenagers and adults that had this disease at a very early age and are now doing very well!

To little Autumn, and to her sisters, for enduring the next 6 months as well as can be expected!

Saturday, March 19, 2011

We have been released, at least for now!

We are currently residing in a local hotel for the night as it was only moments ago that we walked out of the hospital, hooray!

Autumn and I will return Monday to be fitted for radiation and then again on Wednesday for placement of her "portal" for chemotherapy and removal of the staples in her tummy.

We want to thank you all for your unconditional love and support. I realize that in the coming weeks and months we may require additional understanding and patience from some of our good friends and family members as we approach an uncertain future. Trying to maintain a positive outlook for Autumn as well as Sage and Lindsey is one way in which we can attempt to alleviate additional stress in their lives. I know the path won't be easy, but Autumn is such a beautiful and strong little girl who is full of so much life. As my friend Tracy said, "she will have those nurses and doctors charmed in no time", she was right! :)

The nurses and doctors that we worked with offered us a their patience and time and support as well. Many of you have expressed concern regarding her pathology reports and getting a second opinion on what we may be dealing with. We have been told that Wilm's is fairly straightforward, and that at least one if not TWO more panels of pathologists will take a look at at the slides and a portion of the tumor. It will also go to a research institution that deals with Wilm's specifically, so at this moment, we feel fairly confident that she is in good hands.

I worry about the coming months as I know it won't be easy. I have been told more than once that the potion she will be given, DD4-a is relatively mild in the world of chemotherapy...hard to imagine if you consider pouring Drano directly into the vena cava of your four year old "mild", but I'll take what I can get!

Autumn has wonderful sisters all all of you and she will make it through this!

Love, Autumn and her family

Friday, March 18, 2011

Greetings from the Cannon family,

First off - I hope everyone is doing well. We are doing as well as can be expected under the circumstances and yet spirits are buoyant and hopeful.

I'm sure some of you know, but our little girl Autumn (4 years-old) had emergency surgery two days ago to remove her kidney and the large tumor that was attached to it. I just wanted to let everyone know how she was doing, her prognosis and to express our thanks and gratitude to the amazing outpouring of support shown to our family.

How it happened

Juliet and Autumn were at the beauty college in Five Cities at 11:00 a.m. and it was time to leave. Juliet summoned Autumn and she tripped on a bar affixed at the end of one of the chairs. She fell flat on the left side of her abdomen and began to cry. Juliet noted that she was crying differently and a little more than a typical fall from a foot off the ground. They went home and Autumn sat on the couch uncomfortably and even barfed a little. This is when Juliet became concerned and started to suspect a concussion. She called the pediatrician's office and they were at lunch, so she opted to take her to the French Hospital Emergency Room. They took a CT scan and thought she had ruptured her spleen at first look, but then concluded she had a very large mass on the top of her left kidney and it had ruptured.

Everything then happened very quickly. There are no pediatric surgeons in San Luis Obispo, so they made the decision to airlift her to Cottage Hospital in Santa Barbara for immediate surgery. Dr. William Kincannon started to operate at 7:10 on Tuesday night to rid our Autumn of her cancerous tumor, a mere 8 hours after the initial impact on an unforgiving salon floor - for this we are eternally grateful.

The good doctor completed surgery about 9:40 and came to speak with us soon after. Still in scrubs, he recounted that the tumor was a rather large one - gesticulating with his hands the shape a size of a smaller Nerf football. He said he was fairly sure it was a Wilms tumor, and would be shocked if it wasn't. He had seen many in his day, but this one was big and rather lobed - still encapsulated and ruptured. They prefer them to be contained, but he was pleased that it had grown free-standing with no attachment to the peritoneal cavity. He also said there were some surrounding lymph nodes affected, so they opted to remove the diseased kidney with tumor, the nodes and irrigated the cavity with water. They then vacuumed cavity all out to remove the potentially dangerous blood and fluids to prevent "seeding" or cancer cell growth in the surrounding tissues.

Autumn, thankfully, does not remember the surgery itself, but does remember the fall and them "poking" her to find a vein (like 10-15 times). Little kid veins are hard to find.

How she's doing and what we've learned

She was in ICU for about a day and then was moved to a normal pediatric room. They told us it would be 24-48 hours before we had conclusive evidence as to what kind of tumor it was, what stage, and what kind of treatment we could expect..etc.

After lots of anxious waiting, as of today, Friday, we now know it was a Wilms tumor (occurs in children under 5) which is rare as a cancer, but about 1 in 500 kidney cancers are Wilms. She is Stage 3 degree of severity - meaning the cancer was large, had spread to some surrounding tissue (namely 3 lymph nodes) and there was a rupture. The cancer cells are uniform - so she has the favorable rating as opposed to unfavorable which are cells with bizarre shapes. There is one small area (and slide) with odd shaped sells - so she has an anaplastic locus - but is not considered worrisome unless 15% of the tumor has this condition. After 4 years, this type of cancer, with proper care and monitoring has a recovery rate of 85 to 90%. We will take that ALL DAY.

She will have to undergo a relatively light chemotherapy regimen for 6 months. It is a DD4A therapy, which involves 3 different drugs, once a week here in Santa Barbara. There will be radiation treatment everyday for an as-yet-to-be determined three week period, also here at Cottage Hospital.

She also has to have another hour-long procedure next week to install a port-cath which allows the medical staff to administer the therapy as well as draw blood and connect IVs without having to find a vein every week. This requires another inch-long incision in her chest and another small cut in the fold of her neck to place a sub-cutaneous reservoir and line to the vena cava at her heart. The fun never ends, huh?

They expect Autumn to respond well. She has shown she is extremely resilient (she asked for chicken nuggets today - 2 days after major surgery), manages pain well (she got out of bed on her own today and is off morphine) and is healing very fast -  she has a six-inch incision with 14 staples on the left side of her abdomen, right above her belly button - it already looks better. Follow her blog on

Today she is walking around without her IV, sitting upright, coloring and eating solids. We even went for a walk to the rooftop patio. It is truly amazing that in less than 3 days after losing a kidney she is as adventurous, spunky and smiley as she ever was.

Huge "thank yous" all around

Autumn is a living testament to the care, love and support that the staff, our family and the good wishes and prayers you all have wished upon our family can do. Please keep the good juju up! We are not out of the woods, yet. We cannot express what it means to us to have the outpouring of support we have experienced. Thank you, thank you, thank you for your donations, time, friendships and unyielding support to help our baby girl Autumn to lead a normal cancer-free life. We love you all and will do anything we can to ease your burdens whenever we can. We are all doing this life thing together and all we have is each other - so Muchas Gracias and hope to see you all very soon.

Love the Cannons - Jeff, Juliet, Sage, lindsey and Autumn
We had a great night last night, most of the nurses were trying to allow Autumn to sleep a bit.  The night before was a bit challenging because it seemed as though every 30 minutes someone stopped in the room to check something, take blood (her least favorite part!), or change the IV bag, or any number of other things that can occur.

We are hoping to make it home this weekend, which is a bit scary and wonderful at the same time.  Autumn seems to be feeling better, she can move around and make it to the bathroom almost on her own. 

For those of you who know her sisters well, you may appreciate this.  Yesterday when Lindsey and Sage came to visit, Lindsey and Autumn, almost instantly, like clockwork, got into a bit of a tiff...ha!  That's when it seemed apparent that Autumn was feeling better!

Today we are waiting a bit to see if any more results come in.  With cancer cells, there are so many things to look at and so many variables.  They evaluate the cells here and then a woman named Elizabeth Pealman will also look at them, she deals with Wilm's often (there are only 500 cases per year) and we are hoping that anything she may find will be the same as they have found here at Cottage.  It is always good to have a second opinion, just another set of eyes.

Thursday, March 17, 2011

A few hours ago we were finally able to talk to the Hematologist/Oncologist regarding any reports that they may have.

At that point all we knew was that Autumn most likely had a stage three Wilm's tumor (tumor of the kidney).  After all of the initial reports, it seems to be that indeed, that is what they removed two days ago.

So, what does all of this mean?

Autumn will have to undergo about 2-3 weeks of radiation, each session takes about 20-30 minutes and we will have to do this everyday.  She will also have to go through chemotherapy treatments involving three types of drugs once a week for the next 10 weeks and then every 3 weeks for about 3.5 months.

We are so thankful that she does not have to undergo anymore than this, as this will be overwhelming enough for such a little body!

She is a strong little girl as most of you have already noted!  :)  We have so appreciated all of your love and support and care that all of you have given to her over the past 2 days, thank you!!!

Life is precious.
Hello everyone,

I am not sure at this point who has heard the new and who has not.  For those of you who do not already know, Autumn was diagnosed with cancer of the kidney yesterday after an unrelated incident.  Yesterday she tripped and fell and instantly had a lot of side and back pain, she had ruptured the tumor.  This is good because we found the tumor (very often the case with this type of tumor), but it's not good because the rupture can make recovery a bit more difficult and chemo a bit longer to endure.

She is a brave and strong little girl who had to undergo 3 hours of surgery last night to remove this huge tumor (about the size of a cantaloupe) along with her left kidney.  She made it through surgery and is now in recovery but we have yet to hear a final diagnosis.  Waiting is the hardest part.

All we do know is that it could be a stage 3 or 4 (of course we are hoping for a three) Wilm's tumor.  There are many other factors but all of the pathology reports have to come back before we can know for sure.  We may know more tomorrow, but some of the results take up to a week or two.

Autumn will have to undergo at least 6 months of chemotherapy and radiation which seems so insane to me at this moment in time to even imagine.  All we can do it hope for the best pathology results and the absolute best recovery.

We are at Cottage Hospital in Santa Barbara right now, most likely for the next 4-5 days.  We will then go home and set her up with all that she needs, she already misses home and her sisters!  At that time, we should be able to have visitors, but at the hospital the doctors recommend that we keep any visitors to the waiting room. 

As I sit and watch the news regarding Japan, it just makes everything in life seem so very surreal right now...

We love you all!