Pigs and hose pipes.

A walk in the village...

Surgical approach to Sinus/Cranial Tumors RMS

Discovered a link to a paper written by a team in the US where endoscopic surgical procedure of Skull/Cranial base and Sinonasal tumors can be effective even the case of RMS. 

http://www.kjm.keio.ac.jp/past/58/3/152.pdf

Clearly an interesting slant on Cranial/Sinus tumors applicable to Pediatric cases where reduction in morbidity and is apparent. I would be very interested to hear from anyone interested in this kind of surgery.

There are some very skilled surgeons with the ability to do this kind of surgery for Timmy. If good margins   can be attained without radiotherapy we can potentially find a good road for a curative approach . There is also room to consider non-endoscopic cranial surgery which has its obvious challenges but might provide a similar outcome, although with well considered collateral damage.

Neutropenic.

Timmy spent the weekend in Hospital with a Neutropenic fever. Boring days in bed on an IV drip. The lovely nurses at Gloucester Royal looked after him as usual and were wonderful, as ever. Thank you also Dilys for letting him out early today.....and a BIG thank from Timmy for the LEGO you bought to keep him occupied.

Tomorrow the team at Royal Marsden assess Timmy's case for surgery or radiotherapy - hopefully something close to home can be achieved.

Timmys Day

Timmy has had one of those days. First he wakes up and a tooth falls out, happy as fairy will come tonight. Then his cousin comes over for the first time in months with a brand new football strip, boots and all. Timmy so excited runs out into the garden falls over and breaks breaking his Collar bone. Poor boy.

Chemo cycle one complete - now dipping and bloods low.

Fearne Cotton follows Timmy!!!

Timmy was so chuffed to see that Fearne Cotton was now following him on Twitter, and gave him a big shout! I think a young crush might be forming, bless him.

Please follow Timmy on twitter @Timmy_Mason and the lovely @Fearnecotton to keep the support and profile going. We've had some lovely thoughts sent via Twitter from followers as well as some really interesting leads and ideas for treatments. Will keep you posted as they come to light. Thank you for all your warm wishes. 

Timmys Friends!!

 Timmy just prior to recent relapse. He keeps his Pigs - Gloria and 'Bacon' (not edible) in the garden and looks after them daily even when he feels poorly with Chemo.

****For Timmys history of his Rhabdomyosarcoma please scroll down to the first post.

Timmys History

Our little boy Timmy, now 7 years old, was diagnosed with Nasopharyngeal Rhabdomyosarcoma or RMS in 2008. He was treated in 2008 with Chemotherapy, 6 months of IVAdo, and 5 weeks of conventional EBRT Radiotherapy, both of which he tolerated well.

In August 2010 Timmy relapsed after 18 months of clear scans with a tumor in the original site. This local recurrence pointed us towards Brachytherapy and ablation of the Sinus and nasal cavity as local control 2 months into 6 months of VIT Chemotherapy.

Sadly Timmy relapsed for a second time in mid May 2011. And and we are currently looking for any clinical trials for relapsed RMS with targeted Chemotherapy. And as a means of local control, we are looking for options including Radiotherapy (Proton or Stereotactic/CyberKnife) or Surgery as a multidisciplinary approach to a potential curative solution. From a surgical point of view we are considering radical intervention and are currently looking for cranial/Sinonasal surgeon's to help us find solutions for local control - with or without the radiotherapy option.

We are determined to find an option and can provide MRI/CT images and surgical notes to aid assessment. We are also keen for any groups or individuals to contact us with suggestions or requests for further information. Please feel free to contact us at masonfamily2001@yahoo.co.uk