This is done to thank our Heavenly Father for what he did for us through His Son.
This is a copy of the form that we had to sign, after we as parents decided to stop Bethany's chemotherapy, and trust God for her healing, after prayer and a strong sense of His approval.
Please endure all the medical terms and lenght of this letter, you will be greatly encouraged in the Lord if you do.
I removed the names of the doctor and institutions, but can provide the verified information to those who need it.
Bethany still has not relapsed after more than 1 and a half years, (and will not ever, by God's GRACE)....
CONSENSUS STATEMENT FOR THE ONGOING CARE OF BETHANY KRUGER
Re: Bethany Kruger
DOB: 30/03/2004
Diagnosis: Pelvic rhabdomyosarcoma
Bethany Kruger, is a lovely six year old little girl, currently being treated with intensive chemotherapy at the XXX XXXXX Children’s Hospital Oncology Unit. I have been her primary physician since she was referred to me by Drs XX and XX (paediatricians) in Paarl on 30 November 2009.
Bethany has a left pelvic side wall rhabdomyosarcoma and presented with an abdomino-pelvic mass, predominantly left sided, with a clinical and radiologically proven DVT of the left leg. Her metastatic screen was clear at diagnosis (bone marrow and CT chest).
Bethany started intensive chemotherapy (VACA Rx 6053) on 30 November. The first three intensive cycles were complicated by febrile neutropaenia for which she was admitted to Medi-Clinic in Paarl, which was closer to home. During those periods she was looked after by Dr XX with telephonic support from me.
Re-evaluation prior to tumour resection revealed multiple bilateral pulmonary nodules, 3 in the right lower lobe and three in the left lower lobe. Given that the scan was clear at diagnosis, the nature of these nodules was unclear and after discussion at the Oncology Tumour Board meeting we decided to proceed with resection of the primary mass. This was done by Professor XX on 20 January 2010. Histology showed 80% necrosis with areas of anaplasia in the remaining viable tumour. We discussed this with her parents in light of the new chest CT findings. After international consultation with XX at the xx Clinic in the USA, we decided that the histology alone did not warrant intensifying chemotherapy, unless there was evidence of disease progression on the CT chest at the end of radiotherapy.
After a brief convalescence she received a fourth intensive course of chemotherapy prior to starting local radiotherapy. This was again complicated by febrile neutropaenia requiring IV antibiotics.
She began radiotherapy on the 2 March and continued daily until the 12 April. This was complicated by mild enteritis with tenesmus which resolved after radiotherapy was completed.
A repeat CT chest showed clearing of all the nodules in the right lung and all except one in the left lung. The remaining nodule on the left had not increased in size since the previous study (3.6mm).
It was at this point that Bethany’s father raised their concerns about further treatment. According to the provisions of her protocol she still requires 12 cycles (36 weeks) of intensive chemotherapy.
Her father and mother expressed a desire to stop any further intensive chemotherapy, in view of the fact that they felt that she would not tolerate further therapy, both from a physical and emotional point of view. They reflected that they had spent a long time considering the implications of their decision.
WE HAD THE ABOVE CHANGED TO:
Her father and mother expressed a desire to stop any further intensive chemotherapy, due to the harshness of the therapy on Bethany, both from a physical and emotional point of view. For them Bethany’s recovery does not rest solely in the hands of chemotherapy, but also in the Hands of God, through faith in His Son, Jesus Christ, their Lord. They reflected that they had spent a long time considering the implications of their decision.
I responded by saying that I was completely opposed to stopping chemotherapy at this point and I have subsequently had a lengthy interview with both parents to explore their concerns and their reason for this decision.
It is my contention that stopping therapy at this point will almost certainly result in relapse at some point in the future.
After consultation with my colleagues, Drs xx and Dr xx we have concluded that we will not offer intensive treatment in the face of a relapse when primary therapy has been interrupted prematurely.
If following a relapse, the parents have changed their minds and wish to pursue more intensive treatment, we will refer them to Tygerberg for a second opinion or they may seek help at another paediatric oncology unit elsewhere in the country.
As Bethany’s oncologist, I have agreed to:
1.\tSee her every six weeks in our out-patient clinic. At each visit she will undergo a full clinical examination, basic blood markers and a chest x ray and possibly an abdominal ultrasound. Her clinical condition will guide us in terms of more sophisticated imaging should that be deemed necessary.
2.\tIn the event of a relapse, intensive chemotherapy will not be offered with intent to cure again, at this unit.
3.\tI will offer palliative therapy only. The primary objective will be to prolong life and to keep her at home whilst her quality of life is still good.
4.\tI will administer analgesia (and other therapies) for symptom control and I will provide end of life care, if and when that becomes necessary.
I have made the senior Medical Superintendent, Dr XX, aware of the family’s decision.
As Bethany’s parents, we hereby declare that:
1.\tWe fully understand the implications of our choice not to receive any further chemotherapy for the purposes of curing our daughter of rhabdomyosarcoma.
2.\tWe have been adequately counselled by Dr XX as to the potential risks of our decision. We feel that he has given us adequate opportunity to raise whatever questions we may have had, and that we have been given sufficient time to consider very carefully the decision we have made.
3.\tWe wish to stop further intensive chemotherapy, knowing that this is in direct contravention to the medical advice given to us by Dr XX and the treating physicians at the XX Children’s Hospital Oncology Unit.
4.\tIn the event of a relapse, we understand and agree to the parameters set out in this document, with respect to the further care that Dr XX has agreed to provide.
Parents:
Name:________________________________ Signature__________________________________
Name:________________________________ Signature__________________________________
Doctors:
Name:________________________________ Signature__________________________________
Head of Unit:
Name:________________________________ Signature__________________________________
Medical Superintendent:
Name:________________________________ Signature__________________________________
XX
(MBChB(UCT), FC Paeds (SA), CMO (Paeds) (SA))
Paediatric Oncologist, Senior Specialist
Haematology/Oncology Service
XX Children’s Hospital
XX Road
XX, 7700
(Fax) +XX XX XXX XXXX
(Tel) +XX XX XXX XXXX / XXXX
XX@uct.ac.za
