Juliet Knowles began writing a blog about her daughter's fight with cancer as a way to reach out to others in the same situation, and her work became a personal story of survival. Now she offers her perspective on that struggle in Autumn Ivy Cannon. Juliet's daughter, Autumn, is a wonderful, beautiful, and strong little girl who had a very rough and exhausting fourth year of her life. She was diagnosed with a form of kidney cancer just two months after her fourth birthday.
For Juliet, hearing that her child had cancer seemed unbelievable, unmanageable, and unreal. It felt as if she were witnessing someone else's life from a distance, something she believes was a way of protecting her own emotions from the tragedy. Now, looking back, she recalls her experiences of facing that tremendous challenge and learning of her own capacity for strength and endurance.
Juliet began writing during Autumn's cancer diagnosis and treatment in the beginning of 2011. It was an intense year, full of anxiety and frustration as well as moments of truly understanding both life's brevity and its greatness. Sifting through photos and rereading the passages she wrote during the past year throughout Autumn's recovery has helped her to heal, reach out, and share her story with others.
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Autumn Ivy Cannon
A Mother's Perspective from Struggle to Triumph–Wilms' Tumor
By Juliet Knowles
iUniverse, Inc.Copyright © 2013 Juliet Knowles
All rights reserved.
Tuesday March 15, 2011
There is often a day in each of our lives that is simply unforgettable. For some, that day is remembered as the greatest moment in their lives. For others, that day would best be forgotten.
Ours began on a Tuesday morning, March 15, 2011, a day that began like so many others but that ended unlike any I had ever experienced.
Autumn, my four-year-old and I, were at the local beauty school for a haircut. When it was time to leave, she tripped and fell off her chair onto the floor and began crying. Her cry was intense, and it was different from any other cry she had ever had. It was unusual. I had no idea what had happened, but something was just not right. She vomited and then seemed eerily sedated. It was frightening. I rushed her to the ER where she proceeded to vomit so forcefully that I began to panic.
The ER doctor gave her some medicine to take the pain away. She continued to complain of severe side pain but could barely talk and just didn't know how to communicate how she was feeling. I felt helpless and scared.
After an initial scan, the doctor thought Autumn might have an issue with her spleen, something that might be resolved over time. I felt a bit of relief as I sank back into my chair. There wasn't much we could do; we had to wait and monitor the spleen. They gave her pain medication, and she seemed to be doing better.
Moments later, the doctor returned with unexpected news. He said that it was not Autumn's spleen, but it appeared to be her kidney that was the problem. He showed me her right kidney, then her left and explained that her left kidney had a very large tumor growing on it. WHAT? What does that mean? Was this cancer? Was it benign? Are you sure?? I was confused. The only thought that kept passing through my mind was that this was some kind of freak benign tumor, a large mass that was going to be removed. Autumn would recover in weeks, and life would go back to normal.
I had no idea what I was dealing with, or how profoundly the next year of her life was about to change.
I asked the doctor what needed to be done, what was next? He said that Autumn had to be flown immediately by helicopter to Santa Barbara for the removal of this tumor. Since we had no pediatric surgeons in San Luis Obispo, this was our only option. He also said that there was a good chance that I could accompany her, because my demeanor was fairly composed. (Was it?)
It took about thirty minutes for the helicopter to arrive. They placed Autumn on a stretcher and covered her in blankets up to her neck. She looked so helpless, so innocent and so very tiny. She had no idea what was going on. It was at this point that they informed me that I could not join her. At that moment I could only feel rage rushing through my veins. I had to be there with her; how could she go in alone?
I called a friend who was able to drive me down to the hospital. A nurse, she was an ideal person to be with as she had seen situations such as these in the past. On the drive down, the only thing I could fathom was that this tumor was just a mass, not cancer. It couldn't be cancer; how could it be? I tried to think positively.
When we arrived at the hospital, Autumn was already in surgery.
Tuesday March 15, 2011 Midnight
Autumn is a brave little girl who just had to undergo three hours of surgery to remove a huge tumor (about the size of a grapefruit), 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 Wilms tumor, a type of kidney cancer. 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. That feels like forever, and I all I can do is search on the Internet, looking up everything having ANYTHING to do with Wilms. There is too much information out there. It can be a dangerous place for a parent—a scary lonely place without much solace.
What just happened??
At this point all we know is that Autumn will have to undergo at least six months of chemotherapy and radiation which seems so insane to me. All we can do is hope for the best pathology results and the absolute best recovery.
At this moment I realize that life is going to change. Our family is going to change. Autumn is going to have to endure more than I ever had to in my entire life. I am writing this blog to share Autumn's story with her family and friends.
Wednesday March 16, 2011
We are at Cottage Hospital in Santa Barbara right now, most likely for the next four to five days. We will then go home and set Autumn up with all that she needs. She already misses home and her sisters. In a few days, we should be able to have visitors, but for now, the doctors recommend that we keep any visitors to the waiting room as there may be risk of infection.
As I sit and watch the news regarding the nuclear disaster in Japan, it just makes everything in life seem so very surreal right now.
Please keep Autumn in your thoughts.
Thursday, March 17, 2011
A few hours ago we were finally able to talk to the hematologist and oncologist regarding any reports that they have. There are so many questions, I hardly know where to begin.
At this point what we know is that Autumn most likely has a stage three Wilms tumor (tumor of the kidney). After all of the initial reports, it seems to be that this is, indeed, what they removed two days ago.
So, what does all of this mean?
Autumn will have to undergo two to three weeks of daily radiation, each session of which takes about twenty to thirty minutes. She will also have to go through chemotherapy treatments involving three types of drugs once a week for the next ten weeks and then every three weeks for about four months.
We are so thankful that she does not have to undergo any more than this, as this will be overwhelming enough for such a little body!
Autumn is a strong little girl, as most of you have already noted! We have so appreciated all of the love, support and care that all of you have given to her over the past two days. Thank you!!!
Life is precious.
Friday, March 18, 2011
We had a great night last night, as 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 thirty minutes someone stopped in the room to check something, take blood (her least favorite part!), change the IV bag, or any number of other things that needed to be measured. I am trying to sleep on the little twin bed with her. It feels good to keep her close.
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. That's when it seemed apparent that Autumn was feeling better. Nothing like a dose of reality to bring us back to the present moment.
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 there are so many variables. They evaluate the cells here in the hospital, and then a piece of the tumor is sent to a research team (this one led by a female expert) that will also study them. She deals with Wilms often (there are only five hundred 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 from another set of expert eyes.
Saturday, March 19, 2011
We have been released to go, at least for now.
We are currently residing in a local hotel for the night. It was only moments ago that we walked out of the hospital—hooray!
Autumn and I will return Monday so she can be fitted for radiation and then again on Wednesday for surgical placement of the "port" under her skin for chemotherapy. They will also remove the staples from 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 life. As my friend said, "She will have those nurses and doctors charmed in no time," and she is right!
The nurses and doctors that we are working with offered us their patience, time and support, as well. Many of you have expressed concern regarding Autumn's pathology reports and have suggested getting a second opinion. We have been told that Wilms is fairly straightforward, and that at least one, if not two, more panels of pathologists will take a look at the slides and a portion of the tumor. It will also go to a research institution that deals with Wilms specifically, so at this moment, we feel fairly confident that she is in good hands.
I worry about the coming months as I know they 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. (It is hard to imagine this as "mild." It's like pouring Drano directly into the vena cava of your four year old! But I'll take any positive note I can get.)
Autumn has wonderful sisters—and all of you—and she will make it through this!
Love, Autumn and her family
Sunday, March 20, 2011
We finally returned home today. My mom and her husband (Nanie and Gramps) were kind enough to clean our house, do our laundry and wash our dishes before we returned. Thank you!!
We are taking it slow today. All the girls are asleep right now, and we are preparing for the week. I will return tomorrow to Santa Barbara to have Autumn fitted for her radiation (which requires placing temporary markers on her skin), 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 who had this exact same kind of cancer at a very early age and are now doing very well!
To little Autumn and to her sisters—we hope for endurance for the next six months. The road will be strenuous and at this point, it seems too long to imagine.
Monday, March 21, 2011
Autumn had a wonderful night last night. She fell asleep at 7 pm, poor thing. She was so tired! This morning she ate a bowl of cereal (hasn't had that in awhile!) and drank some juice. She seems to be doing really well after her surgery almost a week ago.
I took Sage and Lindsey to school and then headed to Santa Barbara to meet with the Cottage Hospital radiologist. He had to fit Autumn for her ten 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 stays so still that they won't even need to drug her. Oddly enough, Propofol is one of the drugs used to sedate little ones. I am glad we don't have to do this, as she already had that during her surgery to remove the tumor last week.
We will have to return on Wednesday to have her staples removed and her "portal" placed. It is a small device that will have a tube that is directed into her vein so that they can administer the chemo as efficiently and painlessly as possible. It is all under the skin (it will stick up a bit over her chest) which means she can swim this summer and do all regular activities if she is healthy—good news!
Thursday, March 24, 2011
Autumn went in for a second surgery yesterday at 1 pm. This was to remove the fourteen staples (Autumn called them her fourteen babies) and place her port for chemotherapy. This time the procedure was a lot shorter (about one hour) than the removal of the tumor (almost three 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 and said that Autumn must have pain medication, as it was almost cruel not to! For some reason the first nurse resisted again but finally gave in and provided Autumn a little something to take the edge off.
After the surgery, another 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. As a parent, you just have to give up internal resistance and find a way to accept what is happening, but it feels so unnatural.
The good news is that she seems to be doing really 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. We are now told that she will only have seven consecutive days worth of radiation instead of ten. (We are thankful!). Each appointment only takes about thirty minutes, and the radiation itself lasts only seconds.
Every Tuesday for the next ten 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, or she may do well. The doctors said she can even return to preschool if she is doing well—amazing! We have been told that hair loss will happen fairly quickly. It begins in about a week, and most of the hair falls out within five weeks. I worry about how she will react to all of that. She has already had a lot to deal with and this is just one more hurdle. I am open to just about any suggestion regarding Autumn and her siblings, Sage (age nine) and Lindsey (age eight). Any advice one can give us to help with understanding and compassion would really be appreciated.
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.
Love, Autumn and her family
Saturday, March 26, 2011
Well, we seem to have made it through our first week, albeit a short one. 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 about six years old, and she also had a Wilms tumor. This little girl had to undergo chemo twice, as her tumor did grow back shortly after she finished her first round. How incredibly frustrating! This little girl is on her last week of treatments, so it was good 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 port and radiation). They compared scars and 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 this little girl when she had lost her hair. Autumn 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 of mine 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, and 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, and encouragement. We appreciate every bit of it.
To a beautiful Sunday!
Autumn and family
Excerpted from Autumn Ivy Cannon by Juliet Knowles. Copyright © 2013 Juliet Knowles. Excerpted by permission of iUniverse, Inc..
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