It has been a week and still there is not clarification to the bone scan done last week. Dr. Anderson in Texas told Pam (last week) to send the information to him and make arrangements to come on out for additional scans (PET, CT, MRI) and that pallative radiation to manage pain was a very likely option they could provide and also encouraged her to start the oral chemo immediately as it could stall additional growth. Kennedy started taking the oral chemo last Thursday and so far has not experienced any side effects. It would be ideal for Kennedy to be able to have the scans completed locally to minimize travel, massive expense,and intense physical exhaustion before a treatment plan is mapped out, but for whatever reason that is not going to be possible and she will have to travel to Houston to complete the process and determine what can be done to alleviate her pain. As I said, more than likely they will do pallative radiation. There is nothing that can be done to reverse the inevitable at this point, but these chemo drugs and the radiation can keep her comfortable and hold off more potential growth, we hope, and give her more time. Her x-ray today showed very minimal growth, only 1mm, so that is good news.
Kennedy is now emotionally at the place where she does not want to know anything else, good or bad, she has left all decision making up to Pam. What a tremendous burden this has been for Pam, constantly questioning if the right choice is being made, but clear signs have always appeared at the right time and now more than ever she is relying on prayers to help make these decisions clear. So, the timing with the holidays approaching is certainly not ideal, in addition to the massive financial burden this places upon the family, but it seems there are not going to be any options closer to home. Kennedy has an appointment at MD Anderson on November 26th. They may be gone a week or up to three weeks if she is able to have radiation. There may be an option to do a nerve block as well to reduce pain; something has to be done because this child is getting very limited relief now by taking pain meds around the clock, sometimes every two hours...
Please pray that everyone involved in making decisions for Kennedy can feel confident in those choices, that the doctors will only advise from a place of true compassion and integrity, that Kennedy will remain confident in her physicians and caregivers, that her faith and the faith of her family is not weakened by these challenging moments but instead strengthened like the iron in the fire. Please pray for Kennedy to keep up that fighting warrior spirit that has and continues to inspire us all.
I cannot thank you enough for your prayers and support!