First up, I would like to introduce Paediatric Oncologist, Dr. Curt Bodkyn, who is assigned to the Wendy Fitzwilliam Children’s Hospital at Mt. Hope. Dr. Bodkyn has a huge personality and has played an important role in our lives and in the lives of so many children with cancer and their families.
In March of 2005 our 3 ½ year-old son Jabez (JB), had a biopsy done on a mass under his jaw. With many questions to be answered, we were referred to Dr. Bodkyn.
Our first encounter with this gentle giant was on one of the Paediatric Wards where we were to have our first consultation to discuss JB’s treatment plan. We were introducing ourselves to him and JB ran past at top speed. When we indicated that that was JB, Dr. Bodkyn had a confused look on his face. JB had been diagnosed with Non-Hodgkin’s Lymphoma and just by looking at him Dr. Bodykn immediately questioned the diagnosis; and our relationship/friendship began at that very moment.
(It was later discovered that JB had Alveolar Rhabdomyosarcoma, a very rare and aggressive type of childhood cancer which refers to one subtype of the rhabdomyosarcoma family of soft tissue tumors. These are mesenchymal tumors related to the skeletal muscle lineage.)
Over the two years of JB’s treatment we felt very confident under the care of Dr. Bodkyn as our consultant. He was very thorough, explained everything for us to understand. He was also very forthcoming with information. Despite our fears we felt assured that JB was getting the best possible treatment. His bedside manner was re-assuring and most importantly, JB loved him would ask for him by name if he felt uncomfortable with any other attending doctors. I asked Dr. Bodkyn to share some thoughts with us.
Please recount your initial experience with Noel and I as parents and JB as a patient.
I remember this experience oh so well. Beautiful boy with a very aggressive tumor with the odds stacked against him, with a very close-knit family. There were so many lessons learnt from this encounter:
It is in these moments you remember that you are not treating a child but the whole family.
This is such an important point to be noted. The entire family is affected when a child is diagnosed with cancer. Luckily for us we were a two-parent family and were very hands-on parents. Both having very different personalities, sort of like good cop bad cop we made sure we were on top of things at all times. The dynamics of the family changes drastically. In the case where there is an older sibling, he or she becomes the adult at home to care for the rest of the family. An aunt or grandparent may also be asked to take up the slack. Unfortunately, when a child is first diagnosed, there’s an influx of support from the community and other family members but as the dust settles and they go back to their busy lives , the affected families are left to fend for themselves. Not in all cases, but many!
Communicationas difficult as it can be, must always be open, respectful and clear. I won't mention the number of times Chevaughn ran out of a consultation and Noel and I had to run after her!
One of my personality traits is basically fight or flight. Luckily I chose to run at that time. I really just wanted to shoot the messenger, because he’s bringing news that you don’t want to hear, “JB’s cancer is spreading” or “there’s nothing else we can do.” Having Noel there at my side was also a stabilizing factor. More often than not JB would also say to me “mom, it’s ok, let dad handle it.” One of the many lessons I learned from him, to just simply walk away!
The environment (ward/ Clinic) makes a difference to patients/families and Staff as we saw with JB when he went for surgery at the Royal Victoria Infirmary (RVI), Newcastle.
We got the opportunity to go to the RVI in the UK for part of JB’s treatment where he had major surgery. We were exposed to many amazing support services which we re-created right here in Trinidad. JB was on a ward dedicated to treating children with cancer, which he referred to as “Hospital Heaven”. In order to get him to agree to come back to Trinidad we promised him we would fix up “Mt. Hope”. This was the inspiration behind the establishment of the JBF Paediatric Specialty Unit (JBF SU)
Always strive to do better.
So it was with this in mind that we decided that we would do something to help families of children with cancer. We received so much from the folks at the RVI not only for JB as the patient, but also RaVen as his sibling.
Dr. CB: There are two areas that we still need to improve the paediatric Oncology services at the EWMC. One is to provide good psychosocial support for the families and secondly provide more structured activities for the children that are hospitalized.
Two excellent points indeed! We have a plan to reintroduce our Psychosocial Support team at the hospital as it is crucial for us to understand the needs of the families affected by childhood cancer. This insight will greatly assist us in providing comprehensive and holistic support. With regard to structured activities, in the interim, we have a ward assistant who is available daily to play games, read, do arts and craft and spend quality time with the patients as well as provide some measure of relief to the parents.
All in all the service I believe continues to improve and this comes only from a team effort; Corporate Trinidad, International collaboration, great NGOs like JBF, parents and all of the hospital staff.
Next week Tuesday we will continue our discussion with Paediatric Oncologist Dr. Curt Bodkyn as we get into why he chose this profession and what it is like working on the JBF SU