The day started with Maria's parents and Aunty arriving just before we had to leave to visit the Oncologist. We were blessed to see him not long after our arrival. As the primary line of treatment is not acting as effectively as hoped, he laid out a number of alternative options involving mixing different chemotherapy drugs. The side effects in each case would be significantly greater than what Maria has experienced. The final/last resort option is called Bevacizumab (trade name "Avastin"), which I have been following closely over the past six months. It is an anti-angiogenesis drug (i.e. it stops the formation of new blood vessels which feeds tumour growth) which has been controversial and had mixed results. In addition to some of the significant side effects, it costs $2,000 a week. If we had some guarantees that it would be effective and not affect Maria's quality of life, then we'd consider it, regardless of the cost.
Maria is tired of all the treatments and wants to enjoy her remaining time with us. She therefore decided to cease any further treatment. She will continue her medications for now, but will not pursue any other therapies. While from a personal and selfish perspective it is difficult contemplating the result of this decision, I completely respect and support Maria's carefully considered position.
When we returned from the Oncologist, I popped over to our neighbours to see Elaine and find out how Alan was, as he had entered the Hospice on Friday afternoon. I arrived to learn the sad news that Alan died peacefully in his sleep last night. It was a blessing to hear about the family's experience, witness their strength and coping mechanisms. In the middle of all of their busyness, Elaine blessed Maria by coming over to share the news and chat as Maria was unable to get across there. Alan and Elaine were the first neighbours to welcome us into the area and made us part of their street-party crowd, albeit we live in an adjoining cul-de-sac. Alan was a former Airforce officer, so it looks as though he'll receive a military funeral. We continue to pray for peace and strength for Elaine, her children and their families.
I was hoping for a quiet day, but it turned out to be the most challenging for me, coming off little sleep from last night. As it was the first day that people were returning to work after the Christmas/NY break, I received a lot of calls and ended up having quite a few visits. Fortunately Maria was able to sleep through some of them. In short:
* I am liaising with "Carers ACT" for some future respite assistance so I can dedicate some time to the kids.
* The OT spent about two hours with me going through additional equipment requirements.
* A hospice social worker visited the kids. They got on well and she was impressed with how they are managing.
* The community physio came for a visit.
The kids have been an amazing blessing, willing to help most of the time. They are assisting me to dress Maria and help with other tasks. Ben helps me to lift the wheelchair on occasions.
Tomorrow will also be busy with: a Palliative Care nurse visit; me having to dismantle our bed and rearrange the room in anticipation of an afternoon delivery of a hospital bed, hoist and other equipment; visit from the community oncology social worker and an organisation known as "Community Options" to assess the need for some assistance in showering Maria.
The kids will be out with our brother-in-law Brian and his kids as they visit Canberra for a swim and possibly canoeing in the lake.
