Happy 21st birthday Caitlyn

Happy 21st birthday Caitlyn.  We send our love and hope you have a special day xox.  PS - we are most impressed with Sam and Corey’s birthday cake. 

Rory is back on Ward 27B.  Hyper hydration (335ml/hr) was started at 9am yesterday in Clinic (27A).  We had a meeting with Dr Stephen.  Rory’s kidney function test (GFR) and blood results were good enough for the next dose of methotrexate to proceed.  Rory was transferred to the ward around midday.  The Charge Nurse listened to our concerns and placed Rory in room 3 which has a sunny window and a shared toilet.  The methotrexate was given at 3pm and completed by 7pm.  Hyper hydration continues.  We expect Rory to clear Monday afternoon.  Dr Kath came to assess Rory as we are concerned about his mental well being.  He is mildly depressed but given the circumstances it is understandable.  We are going to continue with the sleeping pill at night and we plan to complete the next four methotrexate cycles with at least a one week break in between. 

Yesterday morning Nurse Tracey and I whisked Rory down to Radiology on level 1 (the basement) for a video fluoroscopy to look at how he is swallowing.  A video fluoroscopy is a continuous x-ray image on a monitor, like an x-ray movie.  Rory swallowed a (nasty) white drink laced with barium and then soft food laced with barium.  You could see the internal workings of his head and neck on the monitor.  Rory is swallowing soft solids well but there is a problem when he drinks.  Fluid flows down and is pooling in his throat before he swallows.  There is a risk it could go down into his airway (aspirate).  The Speech and Language team have advised us to get him to sip, hold his breath and swallow rather than continuously drink.  If this doesn’t improve the process we will need to thicken the fluid he drinks.  It was amazing to see ‘inside’ the left side of Rory’s face.  You could see the internal mechanics of the cochlear implant and how his jaw has been reconstructed.  I couldn’t believe how many small metal staples are in his face. 

Rory will have an echocardiogram next Tuesday to measure his heart function.  He has received a lot of doxorubicin which can cause heart failure.  We need to make sure it is safe to give the final dose.  We have a clinic appointment at 9am next Wednesday with Dr Stephen to go over the results and the treatment schedule for the next month. 

Thank you to Gabby’s Starlit Hope for giving the Easter bunny a helping hand.