Hayley Hendricks (Nevada)

DSRCT Diagnosed 12/96 at age 12 - Passed Away 10/26/97

http://pw1.netcom.com/~gehod/hayley.html

From Hayley's web page:            Personal History

Hayley had always been an extremely motivated student. She was tested for, and accepted in the gifted and talented program at her school when she was in kindergarten. She has been taking piano lessons since she was in kindergarten. Hayley has always excelled academically. She has had straight A's from kindergarten through 7th grade except for one B when she was in 5th grade. Hayley has two sisters, Jessica 14 years old in 9th grade, and Jeri 10 years old in 4th grade.

In junior high Hayley has been very active in school and extracurricular activities. She was her class representative to student council in 6th grade and is the president of her 7th grade class. Until she was diagnosed with DSRCT, she was planning to run for student body president during her 8th grade year. Future political ambitions have been put on hold until she defeats this cancer. Hayley has also been very active in church activities.

Hayley was settling into having the best year of her life at school this year until her diagnosis.

Initial Symptoms

About 2 weeks before Thanksgiving 1996, Hayley mentioned to me that her belly was a little swollen and tender. My wife, Bobbi, and I have never been parents that panic and take our kids to the doctor for every little ache. We thought that Hayley may be having a little bowel obstruction or something like that. About a week later, the Sunday before Thanksgiving, Hayley complained that her belly was still swollen and a little tender.

At this point we decided to get her in to see a doctor. We went to a walk in clinic on Sunday morning. The doctor felt her abdomen and said that Hayley had a swollen liver and we should get an ultrasound of the liver to see what was going on. At this point we are hoping that Hayley had hepatitis and nothing worse.

Reality Sets In

My wife got Hayley in to the local hospital on Monday morning for an ultrasound. Even though Bobbi is a nurse, the ultrasound technician was evasive about what he thought the tests showed. He finally told her, if this was an adult, he thought that it looked like metastatic cancer in the liver.

This was devastating news. On that day I couldn't even say those words out loud, all that would come was squeaking noises. Fortunately, my wife is a very take charge person when it comes to a family crisis like this. Hayley was immediately scheduled for a CT scan on Tuesday. At this appointment the doctors did a needle biopsy of the liver and sent it out for a path work up and asked for preliminary results ASAP.

On Wednesday, the day before Thanksgiving we were informed that the preliminary path results showed some form of small round cell tumor. This was after noon on Wednesday with a four day holiday coming up. Fortunately the local pediatric oncologist was able to see us in his office that evening after his last patient that day. At this meeting he looked at the CT scan films and informs us what we already know, that Hayley has some form of metastatic tumor. He says that we should check into the hospital in Las Vegas on Friday morning to have an open biopsy and a port inserted for chemotherapy. We agreed.

Options

Thanksgiving was not a great day. Southern Nevada has a population of over 1 million people but has only one pediatric oncologist. We felt trapped by not having any options. Fortunately, somehow Bobbi got to talk to some one from Candlelighters and we were informed about a lot of other options as far as getting to see other pediatric oncologists. We wanted Hayley to be seen at a center where there was more that one oncologist. We wanted to make sure that her case would be discussed among numerous oncologists so that she would get the proper treatment from the beginning. At the time we still did not know how rare her cancer is. Bobbi was able to get doctors names and phone numbers from San Francisco, LA and Salt Lake City. She was able to talk to doctors on Thanksgiving day at all the locations. (It's unbelievable how dedicated these doctors are to their patients and their profession.)

We finally chose to go to Primary Children's Medical Center (PCMC) in Salt Lake City because they have 5 pediatric oncologist/hematologists on staff at this hospital and my wife has relatives in Salt Lake City. We felt most comfortable with this decision to get Hayley started on the right foot.

Starting Chemotherapy

The oncologist first impression of the cancer was that it was probably rabdo-myo-sarcoma and they laid out the protocol for the treatment of that cancer. They told us that they didn't want to start chemotherapy until they were 100% sure what type of cancer Hayley had. She had CT scans of her chest and a bone scan of her entire body. They did a bone marrow biopsy. Hayley was then scheduled for a larger biopsy of her liver.

Hayley got out of the hospital for a day or two before her lapro-scopic biopsy. When they did the lapro-scopic biopsy they also placed a double lumen Broviac type central line in the major vein that leads to her heart. This central line would be used for all of her chemo therapy and blood draws.

It took 4 or 5 days before they were reasonably certain that Hayley had DSRCT. The oncologist did a lot of quick extensive research of DSRCT, but as anyone familiar with this cancer knows, there isn't a lot of material out there. Our oncologist found the article by Dr. Kushner that had followed twelve patients with DSRCT. He communicated with Dr. Kushner and Hayley was given a 5 day course of ifosfamide and etoposide with mesna rescue. At this point we decided to return to Las Vegas and Hayley would receive her chemotherapy in Las Vegas.

Our oncologist in Las Vegas worked with Dr. Kushner to set up a protocol for Hayley, and this protocol had to be approved by an Investigational Review Board. Hayley is receiving a P-6 (high dosage chemotherapy) protocol including 3 - 3 day courses of high dose CAV (cytoxan, adriamycin and vincristine), with stem cell harvest after the second course of the CAV. Hayley had her stem cells removed during the first part of March and they are being stored for re-infusion this summer. Each course of chemo takes about 3-4 weeks for recovery before the next round of chemo can start.

Hayley had to be hospitalized after her second and third courses of CAV because of temperatures that went as high as 105. She received blood and platelets as well as IV antibiotics during her hospital stays.

Debulking Surgery

Her surgery was on Monday April 7. The surgeon had to remove a small part of the stomach and a small area on the side of the large intestine. There was a large tumor that was growing between the stomach and the large intestine. This tumor was too closely adhered to these areas to remove without removing parts of the stomach and the large intestine. The surgeon stapled the stomach and the large intestine around the tumor and then removed the tumor. A small tumor about the size of a walnut was left on her colon where it turns to enter the anus. The only way to remove this tumor would have been to do a permanent colostomy.

The surgeon did not touch Hayley's liver except to take a small biopsy. The liver has to many tumors to remove, there is no reason to remove some tumors from the liver and leave others. We just have to have faith that the chemotherapy and stem cell procedures will kill off all the remaining cancer cells.

Hayley, being the strong willed person that she is, started getting out of bed on Wednesday. Hayley had an NG tube to keep the stomach empty. She had to be NPO (Nothing by mouth) for 7 days following the surgery because of the removal of the part of the stomach. Not eating isn't so bad, but not getting to drink for 7 days was shear pain. Hayley was on nutritional supplements and had plenty of fluids by IV, but it is just not the same.

After 3 weeks Hayley recovered almost 100%. Hayley and her mom were able to take a short break from all the medical stuff and go to Wyoming for 4 days to help her grandparents open up their summer place.

More Chemo

Hayley went back in the hospital for 2 - 5 day courses of ifosfamide and etoposide chemotherapy. This was followed by a 3 day course of high dose CAV. Hayley ended up back in the hospital after the CAV with fever and needed IV antibiotics, blood and platelets. She will now go back to Salt Lake City for possibly another debulking surgery and one more course of ifosfamide and etoposide, before she starts the bone marrow stem cell procedures.

Stem Cell Transplants

After Hayley recovers from her chemotherapy courses she will begin her bone marrow procedures. We don't know all the specifics of those procedures yet, but we are pretty sure that she will get a course of extremely high dose chemotherapy (myelo-ablative chemotherapy) that will essentially kill off all her bone marrow. She will receive stem cells to help her recovery. Within 40 days she will have another course of chemotherapy along with total body radiation and another stem cell transplant. Hayley will be in the bone marrow unit at Salt Lake's Primary Children's Medical Center for about 3 to 6 weeks after the stem cell transplants and has to remain in Salt Lake City for at least 3 months after her last stem cell transplant.

 

Bone Marrow Procedures

Hayley successfully completed her first of the two bone marrow stem cell transplant procedures. She had some complications with severe diarrhea during her recovery from the chemo and transplant, but everything else went pretty smooth.

Hayley started her second transplant on schedule about 5 weeks later. This procedure which included three days of chemo and three days of total body irradiation (TBI). She actually tolerated the treatments pretty well and her transplant went pretty smooth. Unfortunately, the TBI was too much for her body to tolerate and she had complications with fluid retention that ultimately filled her lungs and ended her life. Even knowing the outcome of the second transplant I think we would still have have made the decision to try the TBI. After Hayley's second de-bulking surgery the surgeon told us that there were still thousands of tumors on Hayley's liver. These tumors were very small, 1 to 2 mm in size, but it only takes one tumor cell to keep a person from being cured. Hayley didnít want to extend her life a few months, she wanted to be the oldest living survivor of this terrible cancer, and we still think this was her best chance to achieve that goal.

My advice to anyone battling this cancer or to the relatives of those fighting DSRCT, is to make use of every minute you have with your loved ones, but never give up hope. Hayleyís stem cells had grafted the day she died. I firmly believe that if she had grafted one or two days earlier, she would still be here with us. My wife, Bobbi, my other two daughters, Jessica and Jeri, and myself are not going to dwell on the past or what could have been. We know that Hayley would have wanted us to go on with our lives the same as we would have if she was still here with us. There is a very big hole in lives, but we are all stepping in to fill the void in each otherís emotions.

Jerry Hendricks (Hayley's dad) 11/13/97

 

 

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