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Rory Gardiner's Webpage

15, Sep, 2009

Tuesday 15th September 2009


 

I found a support group online for families who live with medulloblastoma (the type of brain tumour Rory has) in their lives ( www.medulloblastoma.org ).  The group is based out of America.  I have been amazed at how many replies I have received since posting Rory's story, and how varied the experiences and lives of the children and their families are.  It is a great comfort to know there are others who are fighting the battle we are, and there are children who have come out the other side of medulloblastoma to grow into amazing young adults.  As I read about the hurdles they have faced as they have grown up it has given us some insight as to what to expect in Rory's future, and how we can help him live life to the fullest. 

Another sleepless night has passed.  They seem to be the norm rather than the exception.  It was another early start.  Rory started the day playing Ratchet and Clank on the Playstation - I often wonder what sort of mother I have become!  His milkshake was running at 40ml/hr this morning, and is now up to 50m//hr.  Rory's weight seems to have stabilised at 23.4kg.  Rory needs an average of 65ml/hr to maintain his weight.  Doctor Stephen has stopped the TPN (intravenous feeding) so Rory is receiving 15ml/hr of iv fluids to top up his milkshake until it reaches 65ml/hr.  Hopefully we will be able to move Rory onto the semi-elemental feed tomorrow, which is able to be given at RM House.  The elemental feed he is currently on is made up from powder, needs to be changed every four hours, needs refrigeration, and resembles baby formula.  He is still getting Maxilon to aid his digestion.  Rory had a finger prick blood test this morning, and his white blood count has continued to climb slowly to 0.57. 

Rory received his GCSF injection this morning.  The Nurses are now only giving him Pamol when he needs it.  Rory has also had the plugs on his Hickman line changed.  He spent the morning drawing, we played some games, and we finished the Geronimo Stilton story.  Sean arrived at 11.30am and brought a letter from Room 3 at Dargaville Primary which Rory was thrilled to receive.  Sean and Rory have been doing boys stuff this afternoon; playing the Playstation and board games, wrestling, have nana naps, and talking.  Jackie from the Child Cancer Foundation called in and left two small lego vehicles for Rory to build.  The lovely Steph came also came up and Rory collected more Beads of Courage.  He is now up to 514!  Five full strings, and a few on a new one.  It is incredible what he has been through.