Daniella Rogers Timeline

1. August, 2001. While on a family vacation in Russia, we noticed a lump on Daniella's left shoulder.

2. August, 2001. Upon arriving home, we took Daniella to see her Pediatrician,  Kevin Murphy MD who referred us to the department of orthopedic surgery at Washington University School Of Medicine, Dr. Douglas McDonald.

3. August 13, 2001. Daniella saw Douglas Mcdonald M D who scheduled her for surgery, and asked that she have an oncology evaluation that afternoon.

4. August 13, 2001. Daniella saw William Grossman M D, and David Wilson M D in the oncology clinic at Children's Hospital after having had an ultrasound which yielded the results of "based on the appearance and the increased vascular flow, this mass is concerning for a sarcoma". In William Grossman's letter of August 13, 2001, he states, "it is difficult to attain the diagnosis based on the above studies, but a differential diagnosis would include an infantile myofibroma versus hemangioma versus fibrosarcoma or other soft tissue masses. Other unlikely possibilities include Rhabdomyosarcoma".

5. August 15, 2001. Daniella went to have a CT done at Children's Hospital. In notes from the Radiologists to the Oncology Clinic it states, "The main considerations include soft tissue sarcoma".

6. August 20, 2001. Daniella underwent "excision left shoulder mass" Biopsy.

7. August 28, 2001. Daniella was misdiagnosed. Diagnosis at this time was leiomyoma (spindle cell lesion), after a biopsy of her left shoulder was done.

8. October 15, 2001. We had followed up with the Children's Hospital Oncology clinic. At that time she was examined and we were told to watch for any growth. We were told to follow up with them for a general exam visit in 6 months.

9. October 31, 2001. We followed up with the orthopedic surgeon who had done the biopsy. He told us that things looked good, and that we needed to follow up with him in four months.

10. January 15, 2002. Noticed that Daniella's lump was getting much bigger, called to schedule appointment with orthopedic doctor. He suggested that the lump be taken out, and we agreed.

11. February 12, 2002. Daniella underwent excision of left shoulder mass under general anesthesia.

12. February 15, 2002. The Surgical Pathology center reported that Daniella had Rhabdomyosarcoma, Spindle Cell Variant.

13. February 19, 2002. Dr. Douglas McDonald called us with the report on the biopsy

14. February 20, 2002. We went in to meet with Dr Douglas McDonald to discuss pathology results. Dr. McDonald told us at the time that "We missed the diagnosis last year" "we are sorry". He also said that it was not originally leiomyoma, that it was Rhabdomyosarcoma from the start.

15 . February 22, 2002. We went to the oncology clinic to meet with Dr David Wilson. It was at that time that they told us she had stage III group III Alveolar Rhabdomyosarcoma. Dr David Wilson talked to us at length about a trial for Daniella. That day, we signed an informed consent to put Daniella into the POG D9803 - COG D9803 study. Several additional tests were required for entrance into the study, which were scheduled and carried out.

16. February 28, 2002. Daniella is admitted to Children's Hospital for placement of her port and her first "big" Chemotherapy Treatment.

17. March 4, 2002. Daniella returns to the Children's Hospital Oncology Clinic for "chemo-induced anemia".

18. March 28, 2002. Daniella is admitted to  Children's Hospital for her 2nd big Chemotherapy treatment.

19. April 18, 2002. Daniella is admitted to Children's Hospital for her 3rd big Chemotherapy treatment.

20. April 23, 2002. Coram Home health comes to Daniella's house to draw labs.

21. April 24, 2002. Daniella returns to Children's Hospital for platelets and whole blood due to low counts. She has mucosal bleeding which the nurse explains is a side effect of low platelets. She had her Vincristine treatment at that time as well. A doctor did not examine her. Signs of Veno occlusive disease present. No liver function test done.

22. April 25, 2002. Daniella is brought back to the oncology clinic due to seepage of blood at her catheter site. Again, she has low platelets and receives another transfusion. The nurse noticed swelling of her feet. A Doctor did not examine her during that visit. Signs of Veno occlusive disease present. No liver function test done.

23. April 26, 2002. Daniella wakes up vomiting blood. Daniella is taken to the emergency room at Children's Hospital. Upon admission, she has a glucose <10 and is admitted to the PICU. She is listed in critical condition. At that time, she has a diagnosis of sepsis/dic. Later that afternoon, in the PICU notes, it states, "Patient re-evaluated. It is now clear, based on laboratory studies/images, that Daniella has Veno occlusive disease manifested as:

1. Ascites-documented on abd untrasound
2. >10% Wt gain
3. T bili >2mg
4. ALT -2206 AST - 7342
5. Coagulopathy
6. Thrombocytopenia
7. Retrograde portal flow
Daniella's imaging studies showed normal brain function with no edema present.

24. April 27, 2002. Labs deteriorate, AST - 16410 and ALT - 6071. Blood products are continued.

25 . April 28, 2002. Daniella is still somewhat responsive to pain. She is groaning and grinding her teeth. AST -15499 ALT-5963. Was continued on GCSF Meds for low blood counts. I ask the attending PICU Doctor if we could have a GI-GU consult, she said "No, we are doing everything that can be done for her at this point. We have spoken with the specialist on the phone, and there are aware of Daniella's condition".

26. April 29, 2002. Daniella still moaning today. The attending Pediatrician for the PICU unit tells us that the PICU unit Doctors and Oncology Doctors are disagreeing on a course of treatment for Daniella. I Ask Fiona Levy M D  if Daniella could be transferred to another hospital that specializes in this condition, she said, " No, we are doing everything at this point that would be done anywhere else". Daniella finally has GI, and Cardiology exams today after lying in the PICU thru the weekend. Cardiology consult with imaging studies show that Daniella has Constrictive Pericarditis (thickening the membrane that surrounds her heart) therefore causing her heart to enlarge.

27. April 30, 2002. Daniella was put on dialysis, and Intubation. Daniella has Neurology, and Renal exams today. Neurology exam (CT Scan) Shows swelling in the brain that was not present on Friday. Pupils are not responding to light. Her shoulders are twitching together, Dr's said that this was just Neurological reflexes due to the lack of brain stem function.

28. May 1, 2002. Daniella had a line put in her femoral artery for dialysis.

29. May 2, 2002. Quote from David  Wilson MD ( Daniella's oncology Doctor ) to her grandmother, "We should have caught the Constrictive Pericarditis in the beginning when she came into the ER." Daniella had an EEG (Brain test) she showed no brain activity. David Wilson MD notes today that Daniella's condition remains grave.

30. May 3, 2002 Fiona Levy MD spoke with us today and said that there was about a 1% chance of Daniella surviving, and if she did she would have abnormal brain function, and her heart, liver, kidneys, and lungs would not support her for long. At that time we decided to withdraw life support. Daniella died at 9:30 A.M.

Other concerning comments:
1. Two days before Daniella was admitted to the ER, she showed signs of Veno occlusive disease, She was not seen by a doctor either day. She just came in both days for whole blood and platelets.

2 . Dr David Wilson found out on Monday April 29th that there had been 2 other reported cases of Veno-Occlusive disease in Daniella's study (should have been reported as 12). The look on his face when he told me was one of shock. Why were the other cases of Veno occlusive disease not reported in the correct way?

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