Hayley Hendricks (Nevada)
DSRCT Diagnosed 12/96 at age 12 - Passed Away 10/26/97
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.
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.
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.
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.
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.
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.
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
www.dsrct.com desmoplastic small round cell tumor