Statement on Parker Jensen diagnosis, treatment, medical history
Mollie McDonald, guardian ad litem in the Parker Jensen case, released the following statement Friday afternoon. The statement reports the latest diagnosis and recommended treatment and the boy's medical history. The statement follows verbatim:
STATEMENT OF THE GUARDIAN AD LITEM IN THE PARKER JENSEN CASE
SEPTEMBER 26, 2003
Amidst all of the controversy surrounding the Jensen case, there is one very important issue that is being lost in the fracas. At its center, this case is about one thing: A child's life is at stake. All of the other issues (parents vs. DCFS, alternative medicine vs. traditional medicine, neglect vs. abuse, etc.) although important issues for debate, are secondary to the importance of a child's life.
On September 25, 2003, Dr. (Martin)Johnston received the results of a chromosome test of Parker's tumor specimen. This test has been described as the definitive test for Ewing's sarcoma. This test is positive for a t(11;22) chromosomal translocation which is an absolute confirmation of the diagnosis of Ewing's sarcoma.
We can only imagine how this news will impact Parker and the Jensen family and all of our hearts go out to them today.
Point I. Dr. Johnston has not declared that Parker is cancer free. The CT scan and the bone scan do not reveal any visible areas of obvious tumor. However, there is an abnormality on the MRI which needs to be investigated by an oral surgeon. Dr. Johnston also requested a bone marrow test because in approximately 5% of cases the bone marrow can be the only site of demonstrable metastasis. Also, virtually all patients with Ewing's sarcoma will have undetectable microscopic metastases.
Point II. Dr. Johnston's recommendation for treatment is 14 cycles of multi-agent chemotherapy over a period of 11 months. The recommendation for chemotherapy is not made without due consideration or empathy for the Jensen family. Dr. Johnston is familiar with the effects of chemotherapy, not only in his professional capacity, by in a very personal sense because his own son was diagnosed with leukemia and underwent chemotherapy and radiation for three years. He is alive and well today.
Point III. It is important to point out that if Parker is treated with chemotherapy before the cancer spreads, the cure rate is greater that 70%. However, if the Jensens delay treatment until the cancer spreads, the cure rate decreases significantly. Additionally, once the cancer spreads, the treatment is much more aggressive, and could include bone Marrow transplants and radiation treatment.
1. Dr. Martin Johnston, a pediatric oncologist at St. Luke's Medical Center in Boise, Idaho, was selected by Mr. and Mrs. Jensen to conduct an independent -medical evaluation of Parker's diagnosis and make a recommendation about treatment.
Diagnosis: Dr. Johnston, in conjunction with the hospital pathologist, Dr. Slaughter, conducted tests of Parker's tissue samples. The results of these tests confirmed that the tumor removed from Parker's mouth in May 2003 is Ewing's sarcoma. Dr. Johnston took the additional step of sending the tumor specimen to a cytogenetics lab in Spokane, Washington to test for a t(11;22) chromosomal translocation which is the definitive test for Ewing's Sarcoma. Dr. Johnston learned yesterday that the t(11;22) translocation is present in Parker's tumor specimen. Dr. Johnston reports that this is an absolute confirmation of a diagnosis of Ewing's sarcoma.
Parker's Current Condition: Dr. Johnston completed several radiological tests of Parker's body. The bone scan and the CT scan of his lungs do not reveal any visible areas of obvious tumor. An MRI scan of Parker's face and neck show a small abnormality adjacent to one of his left lower incisors which is probably only a fluid collection, but which needs to be investigated by an oral surgeon. Dr. Johnston also requested a bone marrow test because in approximately 5% of cases the bone marrow can be the only site of demonstrable metastasis. However, Mr. and Mrs. Jensen declined this test because it would be painful for Parker after he awoke from sedation.
Treatment: Dr. Johnston's recommendation for treatment is 14 cycles of multi-agent chemotherapy over a period of I I months. Dr. Johnston reports that chemotherapy is the only effective way of preventing recurrence of the tumor. "Before the routine use of adjuvant chemotherapy for treatment of ESFT [Ewing's Sarcoma Family of Tumors], only 10% of patients survived 5 years." The recommendation for chemotherapy is not made without due consideration or empathy for the Jensen family. Dr. Johnston is familiar with the effects of chemotherapy, not only in his professional capacity, by in a very personal sense. Dr. Johnston's son, David, was diagnosed with leukemia when he was three years old. David went through three years of chemotherapy and radiation treatment. Today David is eleven years old, he is in sixth grade and is doing great It is important to point out that if Parker is treated with chemotherapy before the cancer spreads, the cure rate is greater that 70%. However, if the Jensens delay treatment until the cancer metastasizes, the cure rate decreases significantly. Additionally, once the cancer metastasizes, the treatment is much more aggressive, and could include bone marrow transplants and radiation treatment.
II. On September 5, 2003, Mr. and Mrs. Jensen and the other parties entered into a stipulate agreement which was adopted by the court as a court order. The agreement benefitted the Jensens by the court returning legal custody of Parker to his parents and lifting the warrants for the parents' arrest.
One of the terms of the stipulated agreement was that Mr. and Mrs. Jensen would sign releases of information to allow the other parties to have access to Parker's medical records and to allow Dr. Johnston to share his medical opinions with the other parties. The Jensens consistently refused to sign the releases of information. (2) Consequently, the Guardian ad Litem filed a motion with the court on Monday, September 22, 2003, requesting that the court order the release of medical information. The court granted this motion and signed an order allowing all of the doctors who have examined Parker or tested Parker's tissue samples to release information to the Guardian ad Litem. This order is consistent with the Guardian ad Litem's statutory duty to conduct an independent investigation of the case.
The Guardian ad Litem has received pathology reports from three different institutions which have conducted tests of Parker's tissue samples. All three institutions confirm the diagnosis of Ewing's sarcoma. Those institutions are 1) Primary Children's Medical Center, Salt Lake City, Utah; 2) University of Washington Medical Center, Seattle, Washington; 3) St. Luke's Medical Center, Boise Idaho. Additionally, Dr. Johnston has spoken to Dr. Gonzalez at Children's Hospital Los Angeles, Los Angeles, California, and Dr. Jaffe at National Institutes of Health, Bethesda, Maryland. These two pathologist orally confirmed that they had reached the diagnosis of Ewing's sarcoma.
Three of these institutions were asked to make recommendations about treatment and all three recommended chemotherapy. Those institutions were: 1) Primary Children's Medical Center, Salt Lake City, Utah; 2) Children's Hospital Los Angeles, Los Angeles, California; 3) St. Luke's Medical Center, Boise Idaho. Additionally, the Jensens asked for an opinion regarding treatment from LDS Hospital. On June 19, 2003 LDS Hospital submitted a consultation report which also recommended chemotherapy.
III. Prior to the court's order allowing the release of medical information, the Guardian ad Litem had limited information concerning the circumstances that led Primary Children's Hospital to make a referral of medical neglect to DCFS. After receiving all of the medical records from PCMC, the Guardian ad Litem was astonished to discover the extraordinary efforts made by PCMC to respond to Mr. and Mrs. Jensens' concerns about the diagnosis and the recommended treatment. The following are only a sampling of the efforts made by PCMC: 1) The records from PCMC document that Parker's tissue sample was sent to Harvard at the Jensens' request for a second opinion. However, Mr. and Mrs. Jensen declined the testing by Harvard after they learned that their insurance company would not pay for a second opinion. Due to Mr. and Mrs. Jensens' extreme resistance to agree to accept treatment, on June 9, 2003, the treating physician, Dr. Lars Wagner, offered to have PCMC pay for additional testing and a second opinion of the pathology tests at Harvard University. The Jensens declined.
2) The records also document that May 30, 2003, Dr. Wagner asked three of his colleagues to research Insulin Potentiation Therapy, an alternative treatment suggested by the Jensens. Three different doctors searched for information about this alternative treatment and could find no studies of its efficacy. Dr. Wagner reported to the Jensens that he could find no data to support IPT therapy. Dr. Wagner provided the Jensens with the National Cancer Institute Web site designed to help families evaluate alternative therapies.
3) On May 29, 2003, a PCMC social worker met with the Jensens and offered to have another family whose child had been diagnosed with Ewing's sarcoma call the Jensens and talk about their experience with the disease and the treatment. The social worker arranged to have the other family call the Jensens. On June 5, 2003, the social worker received confirmation that the families had talked, but that the Jensens were focused on ITP therapy 4) On Sunday, June 15, 2003, Dr. David Corwin contacted Mr. Jensen and arranged to meet with the Jensens at their home to further discuss their concerns about Parker's treatment. Dr. Wagner agreed to attend this meeting. Later that evening Mr. Jensen canceled the meeting. At this point almost a month had passed since Parker's diagnosis of Ewing's sarcoma. Mr. and Mrs. Jensen had indicated that they did not plan to allow Parker to undergo chemotherapy, and PCMC felt it was necessary to comply with their statutory duty to make a referral to DCFS.
IV. It has been reported in the media that the Jensens were denied their day in court. The fact is that Utah law sets forth time frames within which the Attorney General must be prepared to adjudicate any petition filed by the state alleging abuse or neglect. The sole reason the Jensen case has not been adjudicated is that the Jensens waived their right to have the adjudication hearing within the statutory time frame of sixty days. (3) Please note that the Jensens were represented by very competent attorneys who were present at every hearing and who are well aware of the required statutory time frames.
The petition initiating this case was filed on June 17, 2003. The Attorney General was prepared for trial and her witnesses were at court on July 10, 2003. The Jensens objected to going forward at that time because they were not prepared to present evidence.
Instead of presenting evidence, the Jensens entered a stipulation on the record that they would take their son to Children's Hospital Los Angeles for testing and would follow whatever treatment was recommended by CHLA. Based on the Jensens' stipulation, the court entered an order that the Jensens would take Parker to CHLA for additional testing and would immediately initiate whatever treatment was recommended by CHLA after their pathologists reached a diagnosis, The court scheduled a third pre-trial hearing for July 28, 2003. Prior statements by the Guardian ad Litem explained what occurred in the court hearing after July 28, 2003.
Dated this 26th day of September, 2003
Molly McDonald Guardian ad Litem
Tracy Mills, Managing Attorney
1 Principles and Practice of Pediatric Oncology, Fourth Edition, Lippincott, Williams & Wilkins, 2001
2 Late in the day on September 25, 2003, the Jensens' attorney faxed a medical release of information to the Guardian ad Litem office.
3 Utah Code Ann, 78-3a-308 states (1) Upon the filing of a petition, the clerk of court shall set the pretrial hearing on the petition within 15 calendar days from the date of . . . the filing of the petition. (2) The pretrial may be continued upon motion of any party, for good cause shown, but the final adjudication hearing shall be held no later than 60 calendar days from the date of the . . . filing of the petition. (3) In the case where a petition has been filed but the child is not in protective custody or temporary custody, the court shall give scheduling priority to the pretrial and adjudication hearings on the petition if the division indicates in the petition that without expedited hearings and services ordered under the protective supervision of the court the child will likely be taken into custody.