Scott had clinic today and perhaps, hopefully, his last lumbar puncture. We were beyond nervous at what todays bloodwork would reveal due to the vast number of bruises that have been springing up on Scott lately. Not just the number of bruises but the time in which they were taking to fade. I didnt write about it, and havent updated on Scott in a while, simply because I "didnt want to go there". You know me, head in the clouds or buried in the sand, reality is often best avoided.
Anyway, his bloodwork looked great!!!! Suprisingly his platelets were very much within normal range, so I guess the bruises really did come from getting slapped about a bit by his older brother - lol - but why they have lingered on and on I dont know. His haemoglobin was 14.4 (normal), wbc 4.9 (low end of normal) and anc 3319!!! Wow for the first time in almost three years SCOTT HAS A NORMAL IMMUNE SYSTEM! (His normal anc's in the past have been artifially elevated due to the prednisone.) He also had decent monocytes which always make me happy. His doctor has given us the okay to wean Scott off Paxil which should mean a drop in weight very soon (YAY!) and his pentadamine breathing treatment is also seen as not necessary anymore.
After clinic we headed over to the day hospital for his lumbar puncture which oddly enough was done by the doctor who originally did the bone marrow aspiration which led to his diagnosis. The procedure went well and so we now wait and hope that no cancer cells are seen in the spinal fluid. If this is clear we can make an appointment with the surgeon, who placed his port almost three years ago, to have it removed.
I still don't really understand why ports are removed six months after treatment as this is not a magic number by any stretch of the imagination. What it does mean is that if the child has been off treatment for 6 months and doesn't relapse they are in GOOD remission but there can still be residual disease which can show up again many years following the end of therapy (ie relapse). Children that relapse in the bone marrow after being O/T for 6 months can try chemo again rather than face the absolute horror of a bone marrow transplant. Most relapses occur during treatment or within the first year but children are not considered cured until they have been in remission for ten years.
I'll leave you with a couple of photos of Scott prior to the lumbar puncture and another of him sleeping off his "lovely propofol" - damn its scary how much Scott likes that stuff! The doctor with him is Dr Wynn, a truly brilliant doctor and our hero.