Meeting Dr Waner

We survived the 4hrs each way driving plus stops trip to Liverpool yesterday, thanks for driving Mum and Dad, especially in the freezing fog on the way back in the dark! Then we all coped well with waiting 2 1/4 hrs for the Dr who was late. He basically confirmed a lot of what we had thought already and put us in touch with a Dr in Boston (we've been trying to do this) who has vast experience of lymphangiomas in this particular area. He did however find it hard to be definate without current MRI images. In a nutshell he felt having left a large portion of the original mass behind (to preserve bowel function) it is quite likely to recurr at some stage and cause problems of some degree. When symptomatic the plan we should follow in his opinion was; to take Josh to Epsom for review and to rule out tummy bugs, do an ultra sound, refer to GOSH if needed and start oral steroids as this reduces lymph flow. Then more surgery if it does not resolve. He commented that it was an extensive mass and showed his colleague. Some viruses are likely to cause swelling in the mass. It will most likely stay the same size in relation to Josh, i.e. he will not out grow it.
We had high expectations of the meeting so as expected we do feel some sense of anti climax that not all our questions were answered, but also reassurance that the right course of treatment has been followed, it is not anymore serious than we knew already, and we have some new avenues to explore, and 'official' information to discuss in our upcoming Gastroenterology appt rather than "i read on the internet...". All in all a good use of a day, if a little exhausting!

On a different note Josh is mostly over his various viruses and his eating is picking up and his tummy settling down, hopefully this will result in a good weight gain as he is now under the 5th centile.