The last update was a while ago and this has several reasons. For one, I didn't have the time or head to sit down and write something in peace, as I spent the precious little time I had in worry or with my son
Furthermore, and actually the main reason, Ilai was really not well. Anything that I could have written you new would have only made everyone worried and sad, and that's not why we're doing this.
My thought was, I'll tell you what's going on when he gets better and I can also show you videos that don't make you sad but show our happy Ilai how we all love him.
So I can tell you now, "Hey the last two weeks have been really bad for us, but now that you know it, you can be happy that he's doing well."
Let's get started:
Ilai had a bacterial fever twice more. The last one was very severe.
His temperature has risen to 41.5 degrees within minutes. He was shaking all over, turned blue, pulse was 200-220. He went into septic shock.
This all had to happen exactly on the day when his immune system was almost at zero. It was a very threatening situation for him. Only two out of three children in his condition survive such a thing.
His pulse stayed that high for two hours straight. During this time, eight infusion pumps were used to infuse liters of medication into him in an attempt to calm his heart.
After these two hours without improvement, we were then asked to leave our room. Ilai was put there under anaesthesia, a tube for respiration was inserted and a temporary new catheter was inserted by emergency surgery.
During this time we sat 4.5 hours in front of the door and did not know how he was doing or if everything went well.
Luckily everything went well and they were able to calm his pulse. Finally we were allowed to see him again.
The poor guy was lying there and had splints on both arms, was connected to no idea how many devices and of course a tube in his throat.
This sight was not beautiful, but he should continue to sleep until he was stable again. However Ilai showed us the rest of the day and the whole night his strong will to fight.
He woke up despite sedation in intervals of 10 minutes - 1 hour. Each time he tried to sit down and shimmyed for the tube to pull him out, which he luckily did not succeed in because his arms were splinted.
The doctor was a bit speechless when he had already increased the sedation to the maximum and Ilai woke up 10 minutes later. He always got a small extra injection which did not last long.
When he woke up he just looked at you sadly and tried to say "water" without making a sound. Because of the intubation he was not allowed to drink anything. Such a situation tears your heart apart.
When I moistened his lips with cotton wool, he started sucking on his breathing tube because he thought it was his drinking cup with straw ☹
The whole horror for him fortunately only lasted until the morning, as he had proved that he was well and had no fever anymore. His tube was removed but he still wasn't allowed to eat and drink because the old catheter had to be operated today because there were certainly still bacteria in it.
In the afternoon the catheter was removed which fortunately went very quickly. A new one could not be placed in this train yet, because it would have contaminated it directly again.
The next few days were not very good for him. He was just cranky and broken. He had a bad blood pressure, which they had to regulate with medication. Also his liver values were bad, because apparently the bacteria had settled down there as well.
A few days, blood transfusion and lots of sleep and medication later, he slowly got better and today I can tell you he is doing well so far. Fortunately you can see this on the video.
From a purely external point of view, it at least looks as if the chemo is working. The eye didn't get better, but it didn't get worse either. Considering how quickly it has grown on the eye recently, this can already be considered a small success.
Starting tomorrow, a new chemo block will be started for 14 days and then an MRI will be done again.
We continue to pursue the goal of making after this block his transplantation, then radiation and then the treatment in Barcelona.
Let's hope the MRI images meet our expectations...