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Rory Gardiner's Webpage

03, Aug, 2009

Monday 3rd August 2009


 

Today was day -1, a rest from the chemo drugs, and we are all relieved.  Rory has continued to receive iv fluids, although the volume has been reduced, pain relief, anti-nausea medication, and medication which protects his bladder and lungs.  Its 6.45pm and he is tucked up in bed asleep, finally down to one connected line.  He has ceased vomiting, but still has diarrhoea.  We remain in isolation, although they have ruled out rotovirus.  Dr Stephen has increased the pain medication as Rory is continuing to have jaw and leg pain, and he now has a patch behind his ear to minimise nausea.  We are trying to get him to eat but it is a battle.  He isn't interested in anything.  When he does have a few mouthfuls of food he calls for the bowl.  The nurses will continue to weigh him daily and a decision will be made about a naso-gastric feeding tube on Wednesday, but it is looking likely.  The tube will stay in for the duration of his chemotherapy.  He is afraid it will hurt, and other children will stare at him and make comments. 

Rory slept and rested a lot today.  In addition he has watched a little tv, read a few stories, built a Lego Star Wars model (Ahsoka's Starfighter, a vulture droid, and two buzz droids) with dad, and done a little spelling.  He is feeling pretty lousy and not interested in much, but he has perked up a little.  It has been lovely to see glimpses of the real Rory.  Every day he has a blood sample taken, and the samples taken this morning were fine.  He has been having problems with blurred vision when trying to read up close and the doctors are keeping an eye on it.  The nurses changed the dressing over his shunt wound, took a swab, and cleaned it out.  It did look better than on Friday night but chemotherapy is going to make healing difficult.  The chemo drugs target rapidly dividing cells and aren't fussy about which ones i.e. healing tissue, the lining of the mouth and intestinal tract.  Nicola came to see us this afternoon to discuss the stem cell transplant tomorrow.  His stem cells are given fairly quickly through the iv line (around 10 minutes) but the cells are stored in a preservative which makes some children very sick.  We are all a little afraid of how Rory will be affected, but have no choice but to wait until tomorrow and take what occurs.