Henry D

06 May 2019

*Henry cannot eat, please do not send food*

Story written 2019

Henry was born on 27th July 2015 at just 26 weeks. Henry stayed in hospital for the first 14 months of his life. Henry came home on oxygen during the day and at night. Henry was diagnosed with Costello Syndrome. Around 400 people world wide have Costello syndrome. In August 2017 a lump was found in Henry’s testicle, he was diagnosed with Rhabdomyosarcoma stage 1. Henry had this operated on and had chemotherapy, he is remission from this.
In October 2017 Henry was diagnosed with Hepatoblastoma stage 2 but as he has been well for some time it was decided to watch and see.
Henry started pre-school in September 2018, he really looks forward to going and seeing his friends.
After an admission to HDU at Christmas, Henry’s blood tests showed possible change to his liver and after monitoring blood tests and scans it was decided to commence chemotherapy again. Henry also now needs an operation to remove the cancer in his liver.
Henry is such a strong, happy chap who loves going to pre school, spending time with his friends and family. He has been on such a long journey in the 3 ½ years since being born.

Update 8th March 2019

On 30th April Henry travelled up to Birmingham Children’s Hospital to have his planned operation to remove the cancer in his liver on 1st May. Unfortunately for Henry and his family, just 15 minutes before going to theatre (all gowned up) Henry’s operation was cancelled due to a family having a transplant call. Amazing for that family but of course hard for Henry’s family who had prepared for that day and the possible outcomes. Henry came home that day and his operation is now rescheduled for May 15th. Following that very difficult week, Henry had a lovely bank holiday weekend. Spending time with his family and friends. Henry went to the park and on bank holiday went to Crealy adventure park with his friends Arthur and Mabel. Henry enjoyed the rides and feeding the animals

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