Scott & Sunny

Scott & Sunny

Thursday, September 4, 2008

All was well at clinic today. Phew!! Hell if it wasn’t I think I would just curl up and die. This shit is really getting to me, week after week after week of stress and worry, it aint much fun. I was told in the early days that we would find our “new normal” and I have to say that this is absolute bollocks. Quite the opposite in fact. The more I study this disease, the more horror we witness, the pain and anxiety Scott is forced to tolerate, the loss of too many children, the knowledge that at any time the cancer could resist treatment, I could go on and on. It all adds up to a heightened sense of panic. 19 months into treatment and I am more scared than at any point in the past. Several times a day I struggle to breathe, my chest races, speaking becomes difficult, and the more I try to control it the more I panic.

Scotts counts were high again (2520), but healthy. His platelets were the highest seen since diagnosis at 362. I raised the question of increasing chemo again and was told he is at the absolute maximum level of vincristine and no way would a doctor give him any more. So I have asked that a raise in methotrexate and 6mp be considered. 6mp is a truly wonderful leukemia drug, and as far as I have observed does not cause any adverse reaction in Scott. The nurse will be bringing this up next week at their weekly meeting. I know Scott is receiving the highest doses recommended, of all chemo drugs, under his protocol but as I understand it mtx and 6mp could be increased slightly at the discretion of the oncologist. I feel it unlikely that this will be approved yet cannot sit back and not push for something which could help keep any resistant cells at bay.

As for the rest of us. David’s dear mom had a successful surgery but is currently in intensive care. I am not qualified enough to go into detail and not sure she would even want me to, so out of respect (and fear of passing on the wrong information) I am keeping this brief. Maybe David will update on her tomorrow. Needless to say she is loved by us all and we just hope she will be back on her feet and feeling healthy and happy very soon. Get well Grandmomma!!

David still feels rotten and starts physiotherapy tomorrow. Oh how I wish I could be there to cheer him on and take lots of pictures! Derry is loving high school but is now also facing health issues which are freaking me out. I am unsure as to exactly what is going on but an x-ray of his spine (to examine his scoliosis) has shown some abnormalities which has led to a referral to an osteopath for further examination. He comes from a long line of tall people with back problems so Im hoping it is something from me or Callum, something he can live with, or something which can be fixed. Kevin is still in a heartbreaking situation which tears me up inside. He has improved, but it is a bad, ugly, predicament. My sister had to take an emergency flight from Mozambique to Johannesburg due to pelvic inflammatory disease (which nearly killed her 15 years ago) but she is doing well now thankfully.

You’ll be so pleased you reached the end of my gloomy (which really isnt all that depressing come to think of it, counts were good so for that I am very thankful indeed) post. Can’t say I blame you. Now off you go, crank up The Smiths and cheer up.

2 comments:

christine said...

yes and you cheer up too! glad Scotts counts ok and Davids mum ok. Now hope Derry is ok as well - the joy goes on!!
French keybard difficult but am learning fast!
love to all
mum\nana

Lorna said...

hey steph - what a lot of medical issues.... im back in my office in northern moz and fine now - thanks. hope to talk soon. x