Sebastian

Our beloved son Sebastian started complaining of feeling a bit tired and lethargic in mid February.  We put it down to all the normal illnesses circulating around school and the fact that he was doing a lot of sport. He used to often fall asleep in car on way back from school. Then one night he woke up in a sweat and delirious. This prompted me to make appointment with doctor. He checked him out on the Wednesday morning and booked him in for a blood test the following Tuesday, meanwhile saying if it got any worse take him straight to A&E.

Very early on Friday morning he called me again drenched in sweat so I bundled him into the car and took him to A&E at the Conquest Hospital. We were seen virtually straight away and Seb had bloods taken then Emma the young doctor said  they were going to do a top to toe approach. He was examined then had bloods taken then was wheeled for an ultrasound of his abdomen. Then he went for an mri scan and a chest X-ray one after the other.

Within an hour we were back down in A&E and Emma holding a bag of broad spectrum antibiotics in her hand was saying they had ruled out Meningitis (thank goodness I thought) but were looking at leukaemia. Quick as a flash I said obviously you are looks at worse case scenario as I did not want Sebastian to be worried. She then said that she was admitting him into pediatric ward. We wheeled him down and he was put in an isolation room. A consultant came to see us and said they need to take more blood as they wanted to bike it up to the Royal Marsden. At this point I knew as the Marsden saved my life 13 years ago. I said should I call my husband.. They said yes.

They asked us if we wanted to talk to them separately . I said yes as I did not want Sebastian to see us devastated by the diagnosis. He was formally diagnosed with ALL at about 1pm. We told him and his main concern ‘‘twas that he would be missing a party that Friday night. His brother said I told you,  so as the night before at the dinner table he said when Seb complained of tiredness. That it was nothing and it wasn’t as if he had leukaemia!

Our whole life changed in an instant then.

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He did not come out of hospital. He was transferred by ambulance (Blue lit and super fast)on the Monday Morning to the Royal Marsden. He was admitted to the Teenage Cancer Trust Unit where he stayed for 2 weeks whilst they did many more tests. His consultant is Robin Dowse. He had to go to Hammersmith hospital twice to deposit sperm. As his treat has rendered him infertile. He then has a port fitted. Then the detailed diagnosis that he had Philadelphia chromosome positive acute lymphoblastic leukemia . Our consultant went from being  positive to more measured in his approach. This type of ALL is only seen perhaps only once a year by Royal Marsden and is more difficult to treat. To it a long story short he went from being standard to high risk in his treatment protocol.

We went home for 2 days and then he was admitted to conquest in isolation with infection for 2 weeks then home for 3 days and re admitted to conquest inisolation for another infection with terrible pain for 10 days then ambulanced to St George’s with this. Chemotherapy was continuing throughout this. Eventually he was admitted back into Marsden so innovative treatment could begin. He had Imatinib (life saving treatment), then he had Blinotumobab For 12 weeks which meant instead of being in hospital for 3 months he was in 2 days a week. He then had conditioning treatment for a bone marrow transplant

This was full body irradiation  and very strong chemotherapy which rendered him very unable to eat so he was fed direct into his blood. He was in isolation in hospital from mid October to mid December He was allowed out but then got another infection so was going back every other day for about iv treatment. We arrived at 6am on Christmas Day gif treatment and again on New Year’s Day

The side effects were lengthy and very horrible but Sebastian has remained positive all the way through. Although at the moment he is self conscious of his appearance. His bone marrow transplant has been a vices and he is now a chimera with 2 sets of DNA; his German donor and his own. Then to add insult to injury he had to have his big toe nails removed due to chemotherapy. This happened at end of June.

We are in absolute awe of the teams at the Marsden and Kipling games and at the Conquest. They have saved our sons life. He is on the way to recovery . He has a way to go yet but he will get there!

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