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Making memories with Jacob.

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Hi Jacob is our 11 month son.

He was diagnosed with a ATRT brain tumour at only 6 months old back in February.

He started been sick only once a day at 1st and only in the morning so we didn't really think much of it. But over the last weekend in January he started being sick more bit not really interested in his bottles and not really wanting food as we were weaning him. So I rang our doctor on the 2nd of February and they thought it might be due to weaning maybe abit of reflux but overnight he started fetching up watery liquid with little dark brown bits in it. I rang the doctor 1st thing and we took him in. We had 2 choice come home with some medication for reflux or go to our nearest children's ward. We decided to go there. We got there Wednesday 3rd of Feb and they started checking him over and a doctor asked can I measure his head I said yeah and didn't think much of it then he came back another 2 times and done it again. On the 3rd time his consultant came with him and measured again and asked me did I think Jacobs head was big for his age? I said No and he repiled we think he has fluid on his brain and we want to do a ultrasound scan. They were going to do it the next day so I stayed in hospital overnight him still being sick and his eyes were going like a sunset. The next morning the doctor came in and said We haven't got a specialist in to do the scan it will be tomorrow now. I got quite upset and i said Don't take this the wrong way and I ain't being funny but if the queens kids needed a scan they would get 1 they aren't coming so Jacob will have there spot. The doctor just looked and left the room. After 20mins he came back and he said I have begged and pleaded with ultrasound team for a appointment today they said they isn't a specialist in today I told them I don't want a specialist I just want a scan and you can take him down at 12.20. So we went for the scan and after we were told Jacob had fluid on his brain and we needed to go to Newcastle but we had to wait for a bed. Later on that day we were told we couldn't go to Newcastle till the next day as there were no beds so at about 8pm I put Jacob in his car seat while we got something to eat and he started fitting I lifted him up he was ridged all these doctors rushed in trying to get a cannula in him but they couldn't in the end a anaesthetist from theatre came and managed to get 1 into him, they were on the phone to Newcastle and they talked them through putting a tap in to drain some of the fluid off to release some pressure and we were blue lighted to Newcastle. We arrived in the early hours of Friday the 5th of Feb and he was rushed in to A&E where they draw some more fluid off and rushed him into theatre to have a external drain put in. We waited in a room for what seemed like forever and after a couple of hours the surgeon came and said they managed to get a drain in and his was in PICU and we could go and see him. We went in to see him wires and tubes everywhere around his little body. We got alittle sleep on and off and on Friday afternoon Jacob's surgeon wanted to do a biopsy so he went into theatre. After 3 hours the surgeon came back and said he had got a sample and it most likely was cancer but we had to wait till after the weekend before we knew what type. We were told by Jacob's consultant that they were thinking it was a type that could be treated easily. So we waited and on Tuesday the 9th we got the devastating news that Jacob had a Atypical Teretoid Rhabtoid Tumour or ATRT for short. We had 3 options 1, have a operation and chemo but we could lose Jacob during the operation. 2, Palliative chemo or 3, Go home and let nature take it course. I asked how long if we just went home and they said a few days a week maybe. So we decided to go with option 1 there was 1 in 10 chance they could cure him completely. So on the 11th of Feb he went into theatre which was booked out all day just for him. He went down at 10am. We went for a walk around a nearby park went round it twice, sat on a bench for a while then went back to our room in Crawford House( a house in the grounds of the hospital for parents to stay close to the hospital) and my phone went at 2.40pm. We looked at each other and said Its to early something has happened. I answered to phone and was asked Is this Jacob Mortimers mam I answered Yeah. They said Its ok just ringing you to let you know the anaesthetist has just rang they are finishing up with Jacob and he will be back on the ward in about and hour and half. So we went back up and saw him. We got there and the surgeon was there and told us the operation went well and he managed to get out more than he expected and he was really happy with it. So then we waited for Jacob to recover abit before we started chemo. It was the 26th of Feb when Jacob started his chemo. It was 2 rounds of 3 lots so 6 lots altogether. After his 1st lot we went home the 1st time after 5 weeks in hospital. We went home on a Tuesday and went back on the Friday to clinic where everything was good so we went back home to go back on the 11th of March for his 2nd lot of chemo. He started being sick again on the 8th of March but we thought it was a side effect of the chemo so we stuck it out till the 11th we got there and we were only there half an hour and Jacob was hard to wake up and his pupils were all over the place. The consultant came and said fluid was building up again so he needed a shunt put in to drain the fluid away off the theatre again. They took him down at 8pm and at 10.10pm he was in recovery and he was hungry so half an hour after surgery he was having a bottle. We went back to the ward and he was awake for nearly 24 hours but he wasn't whinging he was just looking around taking everything in. The next day he did sleep and he slept for about 9 hours. Then on the 15th of March he started his 2nd lot of chemo. Everything seemed to be going well then on the 28th of May after a MRI as his chemo had finished we got told the tumour had started growing again even with chemo and they wouldnt be able to cure him. So now we are looking to make memories with him and have some nice times while we can.

Organizer

Andrea Pentoney
Organizer
England

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