Anti-Body Treatment Trial - 1

Friday 16th November 2012

Bailey and I went to GOSH on Monday. That was the 12th November 2012.

The reason??? The start of the ANTI-BODY TREATMENT!!!

(This treatment is a trial). There are only 30 children in Europe that have been offered this treatment, 10 of those children are in the UK.

AND BAILEY IS 1, (ONE) OF THEM!!! 

(The previous Blogs have more about that).

So.....

Day 1:-

On Monday 12th Nov 2012, me and Bay went to GOSH, getting there about 10:15am.

(Up to the 6th Floor, Elephant Ward, to our room).

Weight, height, blood pressure. Bloods taken and then nose and mouth swabs. (Swabs for MRSA checks).

Finally at about 5pm the Doctor comes in and checks Bay over. All OK.

6.30pm - So it begins.

Bay has an injection in the top of his left leg. 1mm of IL2. (Read on and I will try and explain, as best i can, what everything is and does).

One of the side effects of the IL2 is that about 4 to 6 hours after the injection, the patient may experience a raised Temperature/Fever. Flu like symptoms.

Day 2:-

Yesterday, 13th Nov 2012, about 5.15pm, the 2nd IL2 injection.

At around 10pm Bays temperature soared. It went up to 39.9C. The norm is around 36 - 37C.

Blood was taken for tests - (Cultures). Takes 48hrs for results.

Bay was given Paracetamol to help bring down his temperature.

Finally at 6am it was down to 37.1C.

Day 3:-

Today, 14th Nov 2012 and at about 3.20pm, the 3rd IL2 injection.

4pm, Bays mum Becki arrives to take over from me for the rest of the week. I go home.

It's 9.35pm. Bays mum Becki has just called me and Baileys temp is over 40C. (One of the side effects).

He's been given some more Paracetamol to try and help bring his temperature down. Just waiting for the night Doctor to come and see him.

Day 4 & 5:-

IL2 injection given at around 3pm on both days.

Again, high temperatures and fever.

Bay says that he is not in pain, just feels rough. (so tough/brave).

As a parent , when the temp/fever kicks in, you start to think, "are we doing the right thing"?

It's so hard watching/hearing your kid, your flesh and blood going through this.

When the temp and fever has gone and he is ok, I say to myself, "YES". The temperature/fever is there through the night when he's asleep most of the time. But you don't want your child to have to go through this.

"But what are the options"???

When Bay was offered this treatment, me and his mum had to make a choice. Not just us, but we have also throughout this, made sure that Bailey also has the choice. We have never just said "YES, NO", we have always involved Bay and let him decide what he does or dosen't want. At the end of the day he is 13 years old, he is the one going through this and he 'IS' aware of what is going on.

Hopefully Bay will be out Saturday, (Tomorrow).

He will then have 1 full night at home before he will have to go back in on Sunday evening so that on Monday morning, (19/10/2012), he will be ready for the 2nd part of this 1st Treatment. (1 of 5).