Day + Goodness Knows What but...Nevertheless a VERY IMPORTANT DAY INDEED!

WRITTEN IN THE EARLY HOURS OF FRIDAY 24 OCTOBER 2008

Dear Lovely and Faithful Bloggers,

I am so sorry I have been so rubbish at updating the Blog…it really isn’t much of an excuse but I really never seem to have a moment and of course the longer I leave it the more there is to say…you get the picture!

I am writing this at Great Ormond Street, bizarrely on Fox, the BMT transplant ward. It is 5.30am and I can’t sleep as I have come out in hives as an allergic reaction to the antibiotics I’m on for a nasty sinus infection (six weeks of cold that just wouldn’t go). I’ve decided to wait till 7am when the shops open rather than trawling through London in the middle of the night looking for an all night chemist or a supermarket that stocks non drowsy antihistamines…so here I am with that moment!

We are here for a very important reason. Yesterday afternoon Jesse had his lines out! He’s had his PEG (stomach access) for nearly two years and his portacath (iv access) a year. It sounds like a very positive thing but Jesse was extremely reluctant. “I like myself the way I am” “My PEG is a really good talking point at school” “I know they have to come out sometime but why now?” are some of his arguments. His teacher told me he swings it around in PE and says “It’s my willy!” We’ve done a lot of talking about it and Charlotte, the wonderful therapist at our local has given us loads of ideas, so Jesse had come round to it a bit more. He is hoping for some good scars; a third belly button (he’s got a dimple above his real one so that makes three) and perhaps, if he’s lucky, a third nipple.

He was an angel all the way here (I was expecting a struggle from the front door). He even carried all 20 of his dogs in by himself (they have doubled in number in a year)…BUT…when there was mention of a nose and throat swab it all changed. My feisty stubborn son flipped into action and it was downhill from there! I had to drag him down to theatre. Despite three people restraining him he managed to pull out the tube from the mask and it took two of us to prise off his fingers, but I asked them to keep going as I knew it had to be done and the longer we left it the worse it would get. He even stood up on the operating table with the mask on! But very quickly the anaesthetic kicked in and he was out. It was very, very, very distressing.

He came round grumpy but before long was sleeping peacefully. When he woke he was in a much better mood and settled down to watching James Bond in Dr No. I had anticipated trouble with regard to taking his medication (orally now without the trusty PEG). We have heard “I will never take any medicine by mouth” many times, so I had asked for a cannula to be left in. He was very cross about this…

So we explained it could come out if he took his medicines by mouth. He still has five doses daily of hydrocortisone and penicillin (both taste foul and bitter) . He flatly refused. I tried cajoling, bribing, mixing them with neat Ribena and even coke with no joy, so then I suggested the swallowing option. He claimed that would be easy as he can swallow two pieces of stuck together pasta in one go but that he would try in the morning as his throat was sore. I suggested trying to swallow his vitamin jelly and in seconds it was gone down his throat…He then proceeded to down a tablet of each of his drugs without even a drink. I was amazed and delighted! What a wonderful child! So, having polished off an enormous plate of spaghetti, a chocolate biscuit, a fruit leather and an apple, we settled down to our treat, the highly inappropriate but very funny “Shaun of the Dead”. “Hot Fuzz” is one of his favourite films, he’s watched it hundreds of times, so I’d guessed he might love it. I was right! He’s sleeping soundly and in the morning we are planning a trip to HMS Belfast and then home…


Here is briefish catch up with photos of the last six months

MAY 2008

Jesse Goes Back to School

It was traumatic process but in the end very successful. We had loads of support from his home tutors Steve and Jan as well as from the school, Balfour Infants. His teacher, Jenny and his “one to one support” Bea were fantastic. They were patient, inventive, caring and firm. He has dropped a year and that seems to work,. He is very comfortable with his class and his friends and as he is small he doesn’t look out of place. He started mornings at first and then after a few weeks he went full time (braving the hurdle of lunchtime, although I did have to make sushi for him every day until almost the end of term). He did get very tired sometimes. One day they had a non uniform day and were allowed to dress up. Jesse, of course insisted on being a Ninja in full black kit. He spent the whole morning dashing around doing his moves in the heat of mid summer and in the afternoon fell asleep on the carpet. Then he refused to walk one step so Derek had to be called to take him home by car…



JUNE 2008

Jesse finally meets Raven

But before I let know you about our amazing trip…

I never managed to get around to telling the story of our failed Raven jaunt in July 2007. In a nutshell what happened was…we were picked up by a stretch limo to be taken to Kent where Raven was doing a guest appearance at a school. The plan was to have a private meeting with him for half an hour or so and then have a picnic lunch of all of Jesse’s favourite foods and then home. Unfortunately Jesse was really quite unwell and brewing a serious episode of GVHD. He had been sick in the night and then sick as the limo drew up. So we left, armed with many sick bowls and tissues. After 15 minutes in the limo he was throwing up again… and again… and again... It soon became very clear that we couldn’t go on so we stopped at a service station in Kent and rang GOS for advice. They said call an ambulance and go to casualty for iv rehydration, so that’s what we did. He did settle after a while but was sick at least 13 times in a few hours. Poor Jesse, it was so sad, he was so ill he didn’t even care about seeing Raven anymore. I was gutted. It seemed so unfair. Raven very kindly even offered to come and visit us at A&E in Dartford but Jesse was too ill to see anyone. We were transferred back to Brighton and spent a night at the Alex…from then on you know the story…he went downhill slowly till he was in intensive care in November.

But that was last year, it is a very different story now and in a way it was good that we didn’t make it last year as in June Jesse had a very special couple of days!

Luckily Rays of Sunshine hadn’t forgotten about us and in May I got a call from Beverly, who had organized the last trip. She had kept in touch with Raven and was planning for Jesse to actually go on the set as they filmed Raven. So in mid June we set off to Gatwick Airport (no limo just a taxi) bound for Inverness. Jesse was kitted out in new clothes and shoes, topped off with a fab haircut, all thanks to Rays of Sunshine. Our flight was fine we were met at the airport by another taxi and were driven through the Highlands to Aviemore. We had a lovely room with tartan blankets and in the evening we were treated to a gourmet meal. We dressed in our best clothes and Jesse ate like a (very polite) horse! He loved the piano that played without a pianist and the whole atmosphere.



We slept well and were up early for a feast of a breakfast, then were taken outside to a red carpet which led...
to a silver stretch limousine...

with a chauffeur!

The windows were smoked so we could see everyone staring at us! Jesse loved it!

Its hard to describe, the rest of the day was so wonderful it had a dreamlike quality. We were driven to the set where the film crew were filming Raven. We were met by the man himself, who was so kind and attentive to Jesse the whole morning. Jesse had a tour of all the challenges, met the Warriors (who were charming), operated the clapperboard and even went into the sound van where he had a whale of a time. At the end Jesse was even allowed to have a go at the Way of the Warrior and (with a little help from Raven) he managed to complete it. He was made to feel special and included for every second! Here are a few photos of our extraordinary day, one we will never forget. I'll let the pictures of the rest of the talking...


Jesse and Raven


Jesse beating the Demons


Jesse with some other Warriors


Raven and the Sound Man

A very big thank you to Rays of Sunshine, Jen Warner, Beverly Cummin, Raven and the BBC...you made a little boy very happy indeed!

JULY 2008

Bad News

So it was back to earth with a bump! Jesse back to school, me back to work. Jesse was booked in for his lines to come out on 24 July, the first day of the summer holidays, but I needed to be sure that his immune system would be strong enough so we could drop some of his daily medicines, particularly his steroids. We had been waiting since March for a test to see if his adrenal gland was still working after 18 months of steroids. Jesse finally had this test in early July and we were devastated to hear that his adrenal gland had "gone to sleep". This means another 6-18 months of steroid (this time hydrocortisone) replacement. He needs three doses a day which have to be doubled or tripled if he is ill. So I had to cancel the line removal as his daily medicines had just gone up to 12! A few days later we heard that his CD4 count had reached 600 (this is a test that measure levels of subsets of lymphocytes and is an indicator of immune reconstitution-it had always been around 120...300 was the level they were aiming for). This meant that he was well over target and almost all drugs could finish, one of his antibiotics, the anti fungal drug, the anti viral one and then we started to wean him off the steroids...I know this all sounds like gobbledy gook but it makes a lot of sense to us and in a nutshell meant that Jesse was almost better! Frustratingly it also meant he could have had his lines out but by this time it was too late as all the theatre dates were booked up over August and I didn't want him to miss any school...


AUGUST 2008

Holidays at Greatham

We spent over two weeks at Greatham in August. The weather for the most part was terrible but Jesse had a great time. Here are some photos...


Jesse learning to swim (it only took him a few days)!


At Greatham Church


Practising Archery


Jesse and Bernie (can you see the family resemblence?)


Jesse with a horse...


Jesse riding!


Jesse working on his entry to the Rackham Fete (he won 3rd Prize)!


Albie and Jesse going down the slide at the Rackham Fete

SEPTEMBER 2008

Starting Junior School

This was another hurdle/milestone for us to cross. In the end it has gone very well. Again the school had been fantastic, his teacher Mrs Middleton has Jesse in stitches with her jokes and Jackie Lothian, Jesse's one to one, is great. She adores Jesse and luckily they get on very well. He gets very tired and we are looking forward to half term but all in all Jesse has a pretty good time!


Jesse's first day as a Junior school boy!


A close up (check out those front teeth)!

OCTOBER 2008

Stonehenge and Lines Out!


We went on a trip to Stonehenge one sunny Sunday this October


I think it is fitting to end with a photo that Jesse took himself!

After over three years we have almost come full circle. The lines are out and Jesse is healthy. We are all so delighted and so relieved. We know we are very, very lucky. We are eternally grateful to our anonymous donor and to all those at GOS who worked so hard to give us out little boy back (the same as before but older, wiser and with a wonderful healthy glow) as we are to all the friends and family who have been such a support.

So that’s it, we’re back to where we were. I think this blog has now served its purpose (I must say it has been a wonderful method of keeping lines of communication open with all if you and great therapy for me). So from all of us in sunny Brighton it is

OVER

and OUT!

(phew) x