Amanda’s Story

Jo Ann writes: If tears could build a stairway and memories a lane. I’d walk right up to heaven and bring you home again.

I will remember Amanda mostly for her terrific sense of humor and her wonderful smile. She could be tough as nails but had an extremely gentle heart. I love her so much. I miss her like crazy. It is not right that she should not be here with us now. Personally I detest cancer. It feels like a war against the people we love. Unfortunately sometimes even though we battle with all of our might. We don’t win.

Lisa is Amanda’s mother. She is my best friend. I moved to Virginia when I was twenty-three. I didn’t know anyone and was quite far from my family in Texas. A few weeks after we moved there, I was taking my daughter Lacey to the park when this adorable little girl stopped me on the sidewalk. She wanted to inquire as to how old my daughter was and if she could play. Lacey had just turned three and Amanda had just turned four.

That little girl pretty much changed my life. She introduced me to her mother, who became my best friend. When our husbands finally met they became best friends as well. We lived very close; we spent holidays, vacations and just about every Saturday night together. The girls whose birthdays were only three days apart celebrated their birthdays together until they got older. They became our family and we became theirs.

As neither of us had family living close by, when there were trips to the hospital for various things, Lisa and I just told them we were sisters. But I believe we are much more, as you don’t get to choose your sister. But you definitely get to choose your best friend. Lisa has often referred to me as Amanda’s second mother, because truly I loved her as much as my own. Still do…

I was with Lisa the day they told her that Amanda would die from this cancer I was with her when they said that there was nothing else to be done. I plan on being there forever as we figure out how to get through each day without her.

The Cancer Experience: Amanda started to complain of knee pain in 2002. After seeing the family doctor a few times she was referred to an orthopedic surgeon. He said her pain was probably due to her kneecap. So they did arthroscopic surgery to take a look in 7/02.

She didn’t get better as a matter of fact she was in more pain than she had been in. She also started complaining of pain in her ankle. Her parents kept taking her to the Ortho and finally they did a new x-ray. There was a mass behind her knee. Upon looking at the first x-ray that was taken six months prior and comparing, you could see a quarter sized shadow on the first one. It appeared much larger on the second x-ray. That spot was not addressed when they did the surgery on the kneecap.

In 12/02 the orthopedic surgeon did a biopsy. On initial results the tumor looked benign. She had surgery on 1/03 to remove the tumor. The tumor was much larger than they had thought. It had eaten out the femur up to below the cartilage. Diagnosis: benign osteo ostoma.

She didn’t get better in fact her pain increased again. Her parents sought out a second opinion, which was the same as the first diagnosis: benign osteo ostoma. She was in physical therapy at this time. Her leg didn’t want to bend and she was in a lot of pain. Her Physical therapist suggested she might have Sympathetic Dystrophy Syndrome (RSD). 8/03 She was referred to a pain management physician and was given this diagnosis. She spent the next nine weeks in Children’s Hospital of the King’s Daughters doing intensive physical therapy and every other type of therapy you can imagine. During this time she was put under and her leg was manipulated and even cast to help straighten it. During this time she did seem to improve slightly with the nerve pain but still complained of aching pain. She was released from CHKD.

Two days after she was released from the hospital. She fell and she said she heard a popping noise. So she was x-rayed again. This time there appeared to be three tumors.

After spending nine weeks in the hospital basically being made to walk on her leg, while she was growing not one, but three tumors in her bones, the orthopedic surgeon decided to recommend Washington Hospital Tumor Center.

In November of 2003, Amanda was seen by Dr. Henshaw. He knew right away that this was cancer. She went back a few days later for a biopsy. Dr. Henshaw believed she had cancer just by seeing how much pain she was in and that her leg was twice as big as her other one. But, He had to send out her slides to 3 different facilities for 2 to come up with Osteosarcoma in Dec 2003. They started chemo right away and she only had 1 round when the pain was just unbearable and it was decided to amputate. Amanda by this time was begging for the amputation. She was in such incredible pain. Also there was no hope of limb salvage due to the extent of damage from the large tumors.

Amanda didn’t have a problem with the amputation because her pain was gone and she had been dealing with pain for several years. But unfortunately the doctors didn’t get to see what affect the chemo was having on her tumors. Her chemo consisted of Doxorubicin, Dexrazoxane, Cisplatin, Ifosfamide w/Mesna, Etoposide and Methotrexate. Her last treatment was the week after Thanksgiving 2004.

Amanda lost her battle with Osteosarcoma. Perhaps had they caught it earlier…but sometimes you have to accept that life doesn’t seem fair, you do your best, learn what you can and then share it with others.

Our Goodbye to Amanda: Our family just made it home from Virginia. I find it hard to put into words exactly how I feel. But I want to tell you Amanda’s funeral was perfect. It was exactly what she would have wanted.

First when we arrived at her home. I was feeling very lost. But then her Momma had a few ideas. First she wanted a power point slide show of Amanda’s life. I scanned in nearly 100 pictures from when she was a baby until now. My husband spent the entire day and most of the night putting these images together. We also added a flyer to the pictures that I had printed. Lisa and Frank loved the pictures and the ideas that just came flowing.

So when you entered the funeral home, you were able to view her entire life on the slide show and picture memory boards that her Aunt’s stayed up the whole night putting together. You were also able to see her quilt of love. That had well wishes from friends and family.

Her Mom and Dad picked five songs. As each one played they had the Chaplain tell why each one was chosen. It was beautiful and fitting tribute to someone who loved music.

I am not sure if I told you that I have a daughter. Her name is Lacey she is a little less than a year younger than Amanda. She has always been extremely shy. But she and Amanda were inseparable for a long time. When we first got to the funeral home, Lacey broke down, as she loved Amanda as much as anyone probably a little more than most.

Then the Chaplain asks that people come up and share their fondest memories. I had not cried since finding out that she had finally passed. I prayed and prayed for the strength to help the others that I knew would need me. But as I went to the front of 200 people, the words turned to sorrow. I could not speak.

When I made it back to my seat, Lacey did an extraordinary thing. She said Momma I will tell your story. She stood up and walked up in front of 200 people and said I want to tell you the story my Momma could not… It was like a miracle. It was such a gift. I was not the only one in stunned silence. As anyone who knows Lacey, it was extraordinary that she was able to do that.

Lisa and Frank were also wonderful. They held up with the kind of strength that we would all like to have. There was no doubt as to the depth of their love for each other and for Amanda.

I had no idea a funeral could be so gentle and warm. In life and in death Amanda is still able to have that effect on us all.

Looking back, Living Now: Amanda had made it plain that she did not want any further chemo treatment. But I am still to this day not sure that she actually understood what that meant. If I had to do over again, I would certainly sit down with her and put it very bluntly. I think I would say. Baby, you do realize that without treatment you will die, most likely sooner than later? If you understand that and still don’t want treatment/chemo, I understand and will support you. Then depending on her answer I would immediately start asking her what type of provisions she would want made. I would have talked about what I believe about going to heaven. How it is not a scary place. It is beautiful and someday we would all be together again. The medications pretty much had Amanda in la la land. So you might get a few minutes of clarity at a time but not enough time to have this conversation. I urge you if you are a family member is in crisis. You discuss these arrangements well in advance.

As Amanda voiced her last wishes, her last request to me was to continue talking to people about Osteosarcoma. I consider it an honor and privilege to do so.

Advice for other patients and caregivers: Where to even begin, Well first I will tell you that generally chemotherapy is done before limb salvage. The reason being, they like to do the first few months of chemotherapy and then remove the tumor to see how it has responded to the chemotherapy. So parents and patients should have some time to research the different options and get opinions as to what type of limb salvage they would like to consider. Just because you start treatment with one of the major sarcoma centers. Does not mean that you have to stay there to receive the treatment. You can generally do that at a more local hospital. But getting into one of the Sarcoma Centers is just so important right from the beginning. I realize if you are newly diagnosed that you are probably in a panic. Thinking something has to be done tomorrow. The truth is this will be very difficult and there are sometimes almost unbearable delays. You sometimes have to be very aggressive to get things done.

One other thing I would like to mention is that ACOR’s site actually lists how to get a reimbursement voucher for seeking an opinion at a major sarcoma center. Also take advantage of the Ronald McDonald Houses while they are traveling to hospitals. They are wonderful places. Also much warmer and nicer than any motel room you could ever stay in. Generally pediatric oncology have priority for staying at these facilities.

If on the other hand you are standing at a crossroad. This is what I would like to say to you. It is about the choice we sometimes face regarding whether to continue full speed ahead or to decide as so many of us have had to, that the price was simply to high to continue treatment.

It is the hardest decision that you will ever make. Many before have stood here and suffered. Some may have suffered without my full support. That is no longer the case. Each person has to decide or family or spouse what is right for him or her. I would not wish this decision on my worst enemy. No matter what anyone decides while standing here. From now on they will have my respect for the hard decision that they face and I will without fail support them in whatever they may decide!

Final Thoughts:
When I come to the end of the road,
and the sun has set for me.
I want no rites in a gloom-filled room.
Why cry for a soul set free?
Miss me a little—but not too long,
and not with your head bowed low.
Remember the love that was once shared.
Miss me, but let me go.

For this is a journey we all must take,
and each must go alone.
It’s all a part of the master’s plan,
a step on the road to home.
When you are lonely and sick of heart,
go to the friends we know.
Bear your sorrow in good deeds.
Miss me, but let me go.