Hello and welcome to Jacks update!
I think the last time we did Jacks update he was just finishing his Radiotherapy?
Since then quite a bit has happened and he recovered from his treatment really quickly without too many side effects. His hair has all fallen out and the radiotherapy burnt the back of his head and ears which at times looked really painful and uncomfortable, but he never once complained.
On the 21st of September we went down to Torquay in Devon for a free weeks holiday which was donated by a young man called Luke Tillen who was inspired by the secret millionaire program on the TV. We were referred to him by 2 charities. The first one called OSCAR who referred us to NACCPO (http://www.naccpo.org.uk/) who in turn put our names forward to Luke the founder of this new charity network THHN (http://www.thhn.co.uk/). Jack spent the whole of the summer holidays travelling back and forth to the JR hospital in Oxford everyday undergoing his treatment and missed out on all the fun that all the other kids were having during this difficult time.
So to be offered this was something we could all focus on and look forward to. From the time we got down there we didn’t stop! We were handed a massive pile of leaflets and told that we had free entry in everything. Jack just couldn’t wait to go and do everything there in one day. Well, wherever we went whilst we were down there we were treated like VIP’s and people just couldn’t do enough for us all. On the Thursday the ITN local news crew came to meet us at the Hotel where we were staying to do an interview with us all about Luke and his generosity. The crew met us at 9am and followed us around till 2pm, filming and talking to us all about our struggle and the benefits of our free holiday. You can click here to see the interview we did and which was aired that night on the 6 and 10 o’clock local news. http://www.youtube.com/watch?v=Zh_w5_5MXnc
Jack and his Dad being filmed at Woodlands Theme Park for the ITN News.
Jack did go back to school for a short time but due too the tiredness 5 weeks after the Radiotherapy we had to pull him out as he wanted to sleep every couple of hours. Even though that has worn off and he is back to being hyperactive all the time we have decided to keep him out for now due to worry of catching viruses and this swine flu that seems to be going round everywhere.
These last few weeks Jack has been almost back to his normal happy self and full of joy. He has gone off Abba a bit (thank god) and has now moved on to all types of others songs like Britney Spears, The Weather Girls and a few other artists that have been wearing our ears out. He performs for us indoors with a little show everyday of his music dressed up in a feather bower, head band and flashing lights. This child is definitely going to be a performer when grows up!
Jack went to the JR on the 13th of October for an MIR scan and after a couple of nervous days of worrying about the results we got a phone call from the hospital telling us it was all clear although there were signs of the Tumour being removed.
So up to date jack has 3 operations, one to release the pressure on his brain, two was to remove the Tumour, and the third was to insert his Hickman line. He then had to undergo 6 weeks of Radiotherapy every week day and for 8 Fridays he had a shot of Vincristine Chemo injected into him as well. Every week he has to have his dressing changed and blood taken along with his lines being flushed. This will happen for at least a year.
We were given a date for his Chemotherapy to start about 2 months ago and that date was set for the 20th of October. We have been very anxious about this and have been worried sick about having to face this cruel program after Jack getting so well and back to his cheerful self. On the Monday 19th Jacks mum phoned the hospital to ask them what time they wanted us in as they hadn’t told us in any of the letters they had sent. Helen was told not to worry too much about the time as they won’t be able to accommodate us on the said date as they were short of beds. Well you can imagine how we felt about that? After we had calmed down we rang them back to find out what happens next, they said they would ring the following morning at 7-30am to let us know if they could slip us in. Well 7-30 came and went and didn’t get any calls so we phoned the head of oncology and left a message for them to call us back asap as we were not happy people. Within 30 minutes of that call a nurse called us with all the apologies under the sun and that they had a bed available for Jack.
We got to the hospital around 11-30am on the Wednesday and was told that Jack was having 3 different types of Chemo administered into him. He also was having anti sickness medicine shot into him every 4 hours and hydration fluids via a drip for the total of 30 hours.
Jack was given a private room for his treatment, with 42” plasma TV on the wall in front of his bed all linked to the internet (free of charge) a play station 3 and all the games you could imagine. One of the biggest issues the hospital had with Jack is his weight loss over the last few weeks and the lack of eating. If we can’t get Jack to maintain the weight he is at now or gain some more weight they are talking about inserting another tube in his stomach to feed him with calories and nutrients he needs to gain more weight.
We were let out of the hospital at 9pm on Thursday night and have been given a carrier bag full of medicine for Jack to keep taking and different high protein and calorie shakes to build him up and the medicine is to keep the sickness away along with laxative to help loosen him up as all these medicines will constipate him.
Jack has to go to Reading hospital for the next 2 Tuesdays to have more Vincristine Chemo put into him and then that’s one complete program finished until 4 weeks later when they start it off all over again. This is booked in for 8 programs over the period of 48 weeks.
Although all the medicines have been put in him now the effects won’t actually show for 7 days after. The symptoms being mouth ulcers, skin shedding and generally felling very sick and lethargic, this will last about 7 days to 2 weeks.
Allan & Helen.
