CHAPTER 1
Tuesday March 15, 2011
There is often a day in each of our lives that is simplyunforgettable. For some, that day is remembered as thegreatest moment in their lives. For others, that day wouldbest be forgotten.
Ours began on a Tuesday morning, March 15, 2011, a daythat began like so many others but that ended unlike any Ihad ever experienced.
Autumn, my four-year-old and I, were at the local beautyschool for a haircut. When it was time to leave, she trippedand fell off her chair onto the floor and began crying. Hercry was intense, and it was different from any other cryshe had ever had. It was unusual. I had no idea what hadhappened, but something was just not right. She vomitedand then seemed eerily sedated. It was frightening. I rushedher to the ER where she proceeded to vomit so forcefullythat I began to panic.
The ER doctor gave her some medicine to take the painaway. She continued to complain of severe side pain butcould barely talk and just didn't know how to communicatehow she was feeling. I felt helpless and scared.
After an initial scan, the doctor thought Autumn mighthave an issue with her spleen, something that might beresolved over time. I felt a bit of relief as I sank back intomy chair. There wasn't much we could do; we had to waitand 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 appearedto be her kidney that was the problem. He showed me herright kidney, then her left and explained that her left kidneyhad a very large tumor growing on it. WHAT? What doesthat mean? Was this cancer? Was it benign? Are you sure??I was confused. The only thought that kept passing throughmy mind was that this was some kind of freak benigntumor, a large mass that was going to be removed. Autumnwould recover in weeks, and life would go back to normal.
I had no idea what I was dealing with, or how profoundlythe next year of her life was about to change.
I asked the doctor what needed to be done, what wasnext? He said that Autumn had to be flown immediately byhelicopter to Santa Barbara for the removal of this tumor.Since we had no pediatric surgeons in San Luis Obispo, thiswas our only option. He also said that there was a goodchance that I could accompany her, because my demeanorwas fairly composed. (Was it?)
It took about thirty minutes for the helicopter to arrive.They placed Autumn on a stretcher and covered her inblankets up to her neck. She looked so helpless, so innocentand so very tiny. She had no idea what was going on. It wasat this point that they informed me that I could not joinher. At that moment I could only feel rage rushing throughmy veins. I had to be there with her; how could she go inalone?
I called a friend who was able to drive me down to thehospital. A nurse, she was an ideal person to be with as shehad seen situations such as these in the past. On the drivedown, the only thing I could fathom was that this tumorwas just a mass, not cancer. It couldn't be cancer; howcould it be? I tried to think positively.
When we arrived at the hospital, Autumn was already insurgery.
Tuesday March 15, 2011 Midnight
Autumn is a brave little girl who just had to undergo threehours of surgery to remove a huge tumor (about the sizeof a grapefruit), along with her left kidney. She made itthrough surgery and is now in recovery, but we have yet tohear a final diagnosis. Waiting is the hardest part.
All we do know is that it could be a stage 3 or 4 Wilmstumor, a type of kidney cancer. There are many otherfactors but all of the pathology reports have to comeback before we can know for sure. We may know moretomorrow, but some of the results take up to a week ortwo. That feels like forever, and I all I can do is search onthe Internet, looking up everything having ANYTHING todo with Wilms. There is too much information out there. Itcan be a dangerous place for a parent—a scary lonely placewithout much solace.
What just happened??
At this point all we know is that Autumn will have toundergo at least six months of chemotherapy and radiationwhich seems so insane to me. All we can do is hope for thebest pathology results and the absolute best recovery.
At this moment I realize that life is going to change. Ourfamily is going to change. Autumn is going to have toendure more than I ever had to in my entire life. I amwriting this blog to share Autumn's story with her familyand friends.
Wednesday March 16, 2011
We are at Cottage Hospital in Santa Barbara right now, mostlikely for the next four to five days. We will then go homeand set Autumn up with all that she needs. She alreadymisses home and her sisters. In a few days, we should beable to have visitors, but for now, the doctors recommendthat we keep any visitors to the waiting room as there maybe risk of infection.
As I sit and watch the news regarding the nuclear disasterin Japan, it just makes everything in life seem so verysurreal right now.
Please keep Autumn in your thoughts.
Thursday, March 17, 2011
A few hours ago we were finally able to talk to thehematologist and oncologist regarding any reports that theyhave. There are so many questions, I hardly know where tobegin.
At this point what we know is that Autumn most likely hasa stage three Wilms tumor (tumor of the kidney). After allof 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 dailyradiation, each session of which takes about twenty to thirtyminutes. She will also have to go through chemotherapytreatments involving three types of drugs once a week forthe next ten weeks and then every three weeks for aboutfour months.
We are so thankful that she does not have to undergo anymore than this, as this will be overwhelming enough forsuch a little body!
Autumn is a strong little girl, as most of you have alreadynoted! We have so appreciated all of the love, support andcare 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 weretrying to allow Autumn to sleep a bit. The night before wasa bit challenging, because it seemed as though every thirtyminutes someone stopped in the room to check something,take blood (her least favorite part!), change the IV bag, orany number of other things that needed to be measured.I am trying to sleep on the little twin bed with her. It feelsgood to keep her close.
We are hoping to make it home this weekend, which is abit scary and wonderful at the same time. Autumn seemsto be feeling better. She can move around and make it tothe bathroom almost on her own.
For those of you who know her sisters well, you mayappreciate this. Yesterday when Lindsey and Sage came tovisit, Lindsey and Autumn, almost instantly, like clockwork,got into a bit of a tiff. That's when it seemed apparent thatAutumn was feeling better. Nothing like a dose of reality tobring us back to the present moment.
Today we are waiting a bit to see if any more results comein. With cancer cells, there are so many things to look atand there are so many variables. They evaluate the cellshere in the hospital, and then a piece of the tumor is sentto a research team (this one led by a female expert) thatwill also study them. She deals with Wilms often (there areonly five hundred cases per year), and we are hoping thatanything she may find will be the same as they have foundhere at Cottage. It is always good to have a second opinionfrom 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 thehospital—hooray!
Autumn and I will return Monday so she can be fittedfor radiation and then again on Wednesday for surgicalplacement 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 andsupport. I realize that in the coming weeks and monthswe may require additional understanding and patiencefrom some of our good friends and family members as weapproach an uncertain future. Trying to maintain a positiveoutlook for Autumn—as well as Sage and Lindsey—is oneway in which we can attempt to alleviate additional stressin their lives. I know the path won't be easy, but Autumnis such a beautiful and strong little girl who is full of life.As my friend said, "She will have those nurses and doctorscharmed in no time," and she is right!
The nurses and doctors that we are working with offered ustheir patience, time and support, as well. Many of you haveexpressed concern regarding Autumn's pathology reportsand have suggested getting a second opinion. We havebeen told that Wilms is fairly straightforward, and that atleast one, if not two, more panels of pathologists will take alook at the slides and a portion of the tumor. It will also goto a research institution that deals with Wilms specifically,so at this moment, we feel fairly confident that she is ingood hands.
I worry about the coming months as I know they won'tbe easy. I have been told more than once that the potionshe will be given, DD4-A, is relatively mild in the world ofchemotherapy. (It is hard to imagine this as "mild." It's likepouring Drano directly into the vena cava of your four yearold! But I'll take any positive note I can get.)
Autumn has wonderful sisters—and all of you—and she willmake 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 rightnow, and we are preparing for the week. I will returntomorrow to Santa Barbara to have Autumn fitted for herradiation (which requires placing temporary markers on herskin), and then Wednesday we will return to begin chemo.
It's a long road ahead, but already I have heard of threepersonal stories of teenagers and adults who had this exactsame kind of cancer at a very early age and are now doingvery well!
To little Autumn and to her sisters—we hope for endurancefor the next six months. The road will be strenuous and atthis point, it seems too long to imagine.
Monday, March 21, 2011
Autumn had a wonderful night last night. She fell asleep at7 pm, poor thing. She was so tired! This morning she ate abowl of cereal (hasn't had that in awhile!) and drank somejuice. She seems to be doing really well after her surgeryalmost a week ago.
I took Sage and Lindsey to school and then headed to SantaBarbara to meet with the Cottage Hospital radiologist. Hehad to fit Autumn for her ten consecutive days of radiationwhich should begin no later than Monday. There are someside effects such as nausea, but the good news is that sheis so brave and stays so still that they won't even need todrug her. Oddly enough, Propofol is one of the drugs usedto sedate little ones. I am glad we don't have to do this,as she already had that during her surgery to remove thetumor last week.
We will have to return on Wednesday to have her staplesremoved and her "portal" placed. It is a small device thatwill have a tube that is directed into her vein so that theycan administer the chemo as efficiently and painlessly aspossible. It is all under the skin (it will stick up a bit overher chest) which means she can swim this summer and doall regular activities if she is healthy—good news!
Thursday, March 24, 2011
Autumn went in for a second surgery yesterday at 1pm. This was to remove the fourteen staples (Autumncalled them her fourteen babies) and place her port forchemotherapy. This time the procedure was a lot shorter(about one hour) than the removal of the tumor (almostthree hours). She is such a trooper; she did so well!
She was in a lot of pain when she first woke up, and thenurse on duty at the time had refused to give her anymore pain medication. (God knows why!). A secondnurse followed shortly and said that Autumn must havepain medication, as it was almost cruel not to! For somereason the first nurse resisted again but finally gave in andprovided Autumn a little something to take the edge off.
After the surgery, another nurse came in to give Autumnher first chemo treatment. It is so strange watching themput this insane chemical in your baby. It hardly seems real.It felt as though Autumn was part of a weird experimentbeing conducted by aliens. As a parent, you just have togive up internal resistance and find a way to accept what ishappening, but it feels so unnatural.
The good news is that she seems to be doing really well. Mymom and I stayed with Autumn last night in a hotel acrossthe street from the hospital, because Autumn also has herfirst radiation treatment today. We are now told that shewill only have seven consecutive days worth of radiationinstead of ten. (We are thankful!). Each appointment onlytakes about thirty minutes, and the radiation itself lastsonly seconds.
Every Tuesday for the next ten weeks, Autumn will have herchemo treatment. She would love all of your thoughts andprayers on that day, especially. She may get sick from it, orshe may do well. The doctors said she can even return topreschool if she is doing well—amazing! We have been toldthat hair loss will happen fairly quickly. It begins in abouta week, and most of the hair falls out within five weeks. Iworry about how she will react to all of that. She has alreadyhad a lot to deal with and this is just one more hurdle. Iam open to just about any suggestion regarding Autumnand her siblings, Sage (age nine) and Lindsey (age eight).Any advice one can give us to help with understanding andcompassion 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 youfor 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, albeita short one. Autumn did very well. I am sure the hardestpart is yet to come, but one day at a time, right?
Autumn had the amazing opportunity to meet another littlegirl JUST like her. This little girl is about six years old, andshe also had a Wilms tumor. This little girl had to undergochemo twice, as her tumor did grow back shortly after shefinished her first round. How incredibly frustrating! Thislittle girl is on her last week of treatments, so it was goodto have an idea of the "outcome" of this type of cancer.She had the exact same markings as Autumn (for removalof the tumor, placement of the port and radiation). Theycompared scars and battle wounds. For such young girls,they were both pretty amazing! They have already handledmore than most adults, and they take it in such stride. Sageand Lindsey are going to meet this little girl next week.
Autumn was also able to see this little girl when she hadlost her hair. Autumn had lots of questions about that, andI am sure she will have more as time goes on. All of this isnew, as I am sure it is for any family going through this. Aparent is never really sure of what the right thing to do maybe, but there are always lots of lessons to be learned, that isfor sure.
A friend of mine sent some great books on cancer, siblingsand being sick in general. It helps for all the kids in a familyto have an idea of what to expect and to see that they arenot alone.
Autumn continues to do really well, and has even hadthe chance to visit with some friends. She really missespreschool and hopes she can return soon.
Thank you again, everyone, for all that you have done! Thedinners 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
