Well thank goodness that part is over! Harry was meant to start his treatment (Omburtamab) yesterday but on the way to the hospital we got a call to say that it had been delayed yet again..this time it was due to the transportation between Memorial Sloan Kettering Hospital and the airport, and the plane was missed. Russ, Deb and I were pretty disheartened and Harry was cross too. We were told it would be the following day (today). So this morning after waking at 5.30am for the second day in a row to give Harry a cooked breakfast (before 6am as he had to fast for 6 hours before the infusion) we were told just before we left for the hospital with Russ and Deb that we should wait to hear as the Omburtamab has not yet been released from customs..but it finally was and we are now at the hospital after the first dose which was given at 4pm.


Harry had the infusion with 4 doctors surrounding him and my god our hearts were in our mouths..we knew if he was to have a reaction it would likely be in the first few minutes, and that wouldn’t be good..his feet started tingling quite badly and I had to massage his feet for ages and then he got really hot so a nurse and Russ were fanning him to cool him down, this went on for I think about 20 minutes and eventually it passed…and we breathed again!! Harry is being closely monitored and bloods checked and fluids are taken from his ommaya (tube into the brain and CNS) after 30 and 60 minutes and will again after 4 hours. He is feeling fine though now thank goodness, we can tell by how quickly he demolished a KFC!! We will have to take Harry for further scans and tests for the next 3 days and then wait for the main treatment dose next week.


So glad that bit is done at last! Thank you so much again for all your messages of support to all of us.

Nina xx