Journey

We have been extremely fortunate Covid19 passed as a minor viral illness for Rory.  The anti-viral medication was a game changer.  Rory was feeling better within 24 hours.  After a few of days we were able to gradually reduce his hydrocortisone from stress dose back to normal level.  After being stuck at home for a week he was very glad to be back out in the community on Friday.  He missed the final week at WITT, building and banter at NP Men’s Shed and his volunteering opportunities.  Colt was the sicker of the two boys for several days with 40 degree temperatures at night which had me worried.  He made a slow recovery only returning to school on Thursday.

We have had a phone consultation with Endocrinologist Dr Sharma.  We have increased Rory’s dose of maintenance adult growth hormone and we will follow up with a blood test in a couple of weeks.  His bone density (measured by a scan) was lower than expected, likely due to the cancer treatment and steroids which have followed.  His bone density will be monitored more closely and will have to come up with a plan to manage this if we continue to see reduction.  I had a catch-up call with ACC case worker Jes.  We have asked for the damage to Rory’s pituitary gland, caused by radiotherapy, which causes his hormone dysfunction, to be considered as an addition to his treatment injury claim.  As with the other late effects the severity of the damage is not a normal consequence of treatment.  We are working with ACC to explore options to keep Rory active in the community, including the use of a powered mobility device and a vehicle (if one is required to transport Rory and the power chair).  We are also looking at options for respite for Sean and I.  We would like to celebrate our 25^th anniversary child-free one weekend later in the year.  There is no one we can leave Rory with this long.  The school/polytechnic holidays are now upon us so Sean and I will be doing the same juggle as all other working parents.  We also hope to have some quality time together as a family.