Sunday 28th December
Jesson began Chemo no 4 Monday, he was very frustrated being hooked for so long, 52 hours in all. Before he went home he had to have all dressings changed, he really kicked off, all of ward 27 knew what Jesson was having done!!! it was like a major op removing little plaster from his cut on his neck, ( it must of been horrible). Christmas day was really great Jesson was really well. Both of the children were very excited, it was very memorable for all the right reasons, we spent the day with Nan and Gang Gan. Dinner went well, very unorganised, as we never expected to at home, we didn't care we were all together! JJ has been very loud chatty and lively he has been really good. The living room was so full of presents you could hardly move. We have had a really good week!
Sunday 21st December
This week has been eventful, Jessons Hickman line is out due to a blockage and infection, he has been home for the day, and on Saturday his new line is in. He has been quiet, he is still in pain from the new line going in. the new line bleeds really well, the other one was always a pain from the beginning. I have finally done some Christmas shopping, I can not believe it is Christmas day on Thursday!! We have been in hospital almost all of December.
Sunday 14th December
Jesson has been spiking high temperatures all week, he has been up and down, he has not really been out of bed all week. He is on IV antibiotics, he is either hooked up to fluids, NG feed or antibiotics. He is very neutrapeanic 0.0. he has been very jaded, not himself at all.
Sunday 7th December
One of the children died today, it has been very sombre, the staff have been quiet, and I'm sure the children have noticed that the atmosphere is different. Jesson has had chemo no3. JJ has had a bad reaction to platelets, coughing ,chest pain, and struggling to breathe, after steroid and piriton he was up eating a McDonalds. After Jesson was unhooked from chemo he ran down the ward and hid, he was so relieved to be free. Went home Wednesday, visit short and sweet, back in Thursday high temp peaking at 39.6. Another challenging week.
Sunday 30th November
The beginning of the week Jesson was great, he has discovered Daddy's lap top where he can play games. Jesson has made a claim on the hospital trike, when he goes toilet it has to go in with us. Jesson has been on a long bike ride to the park in Aylestone, he did really well, all the way there and back, it was so lovely to see both Jesson and Kesia having a good time together. Wednesday JJ went in for a blood transfusion, racing round. 2am NG tube came out I repassed it for him, thank goodness I was so relieved he did not have to have another. Friday we had to go back in due to a high temperature 38.1. Jessons hair is falling out, I have been quite down today. One of the other children are very poorly it is distressing to see the family. Opposite Jessons bed there is a little boy with NB who has relapsed, all in all not a good few days, I am finding everything difficult at the moment.
Sunday 23rd November
This week has been, a lot better than the last, it has been such a struggle to get Jesson to eat, he is so thin, and still being sick. JJ has made biscuits with Nan Nan every day this week, still not eating them! Daddy's birthday Jesson was really excited. we have entered in to the obsession of blood results Jesson is now neutrapeanic, this is when Jesson has very little or no immunity. Jessons pain is little bit better, he seems a lot happier. Chemo no 2 started Friday, he seems very well considering he is on chemo. Saturday Jesson had to have an NG tube, this is fed up his nose and into his tummy, this will enable us to feed Jesson in the night on a pump, he has dropped to 2 stone 3, he was 2 stone when he was 1year old! he was very sick when he was having it passed, he was very unhappy. Today the Hickman line wouldn't bleed again, we have had platelets today. Jode visited today it was great no pain killers and playing snooker, and riding his bike.
Sunday 16th November
Chemo no 1 started on Monday, it all began, with his Hickman line not bleeding, they will not give chemo if the line does not bleed. I felt very anxious waiting for treatment to begin, finally the line bled, chemo started at 9pm. at 10.30pm Jesson started with a terrible pain in his tummy, he was very sick until 4am. Jesson was very sick all day Tuesday, the tummy pain was still really bad. He had an X-ray, the results were that he had a bowel blockage due to the morphine pain killers, this is quite common when taking this. On Wednesday Jesson was still grim. Thursday hurray!!! poooooo!! he finally looks a little brighter, he ate a little and drank. Sunday today, we can not believe it he has had no pain killers for 24 hours this is the first time, with no analgesia since this horrible nightmare began in September. Jesson is so thin he has lost so much weight.
Sunday 9th November
This week has been loads more tests, Hearing tests, as Jesson will most likely suffer profound hearing loss, heart echo, chemotherapy can damage the heart, and a kidney function test. Jesson has had his Hickman line in his chest, this was his first general anaesthetic. It is a line that is under the skin going into his heart. Medicine can be given and blood tests can be carried out using this. The disease is really taking hold, he is struggling to walk or move. we had to go back in on Friday due to a high temperature 38.1. we had a discussion with the consultant about Jessons treatment it will be very intense chemo every 10 days, we have been told it is likely to make him very ill, this is the first time they have carried out chemo in such close succession , without waiting for the blood counts to rise. We hope this intense treatment will eradicate every cell of this evil disease. Jesson has been very down today and the pain is awful. I am anxious about the start of chemotherapy.
Tuesday 28th October
CT scan, Started Oral Morphine
Sunday 26th October
This week has been a lots of tests that Jesson has had to undergo. they have been staging the disease. The scariest part was walking through the doors of the oncology ward 27, I could not believe it was our little boy with cancer! our first moments were spent talking to Claire and David with Hannah who also has NB (Neuroblastoma) it's good to talk. Jesson has had a CT scan, MIBG, and a bone marrow test. The results were, tumours in the arms , legs pelvis and spine, the bone marrow was positive, and the primary was in the lumbar region close to the spine, it was 11cms x 5cms. this was typical NB stage 4 .
Thursday 16th October