Save Ilai
Unfortunately our week off at home did not work out.
In the night from Sunday to Monday, Ilai woke up at night, as she did 3 months ago, screaming with all her strength and body and soul. He could not be calmed. The whole thing went three times with two-minute breaks.
We have a lot to tell you as we unfortunately didn't get the chance to bring you up to date in the last days.
Firstly, to answer the question why we are taking such a long chemo break now. The doctors said they want to take this break until the next MRI on July 10th to be able to tell if the cancer is in a controlled state to start the transplantation.
Today comes another update of our little angel.
The blood count on Monday was still good and therefore there is no booster injection.
Tomorrow we drive back to Sao Paulo to the hospital and there he gets a quick chemo.
Actually, the original plan was for Ilai to have another MRI this week after the two chemo cycles.
We were told, however, that the MRI is now only performed on July 10th. Why? We have no idea. We are a bit insecure about it and we don't like it, because everything got worse during the last 3 weeks break in Corona Isolation. Understandably this makes us afraid.
We very much hope that there is a reason for this and we will talk to the doctors again tomorrow to get clarity for this delay.
I would like to ask you ALL for something that has touched us very much.
It would be great if you would spread the amount down on Facebook to the world.
Mark Seibert, a musical actor from Frankfurt, has called on his fans to help Ilai. Also his very dear family has already contacted us. It is wonderful how much humanity we are allowed to experience again and again in various ways and we are incredibly grateful for that.
It would be nice if you would spread this beautiful message of the heart. Thank you ALL ❤️
Ilai just did his blood count and got great results. So we have a weekend off. Only Daddy has to work this weekend. On Monday we will repeat the blood count and then we will decide how to proceed.
Either another week of immune booster injections (granulokines) or then in the middle of the week another MRI to validate what the cancer has been doing for the last three weeks.
When we have a day off all together we also use it to do one of Ilais favorite things. A lot of splashing with water even if we have to wrap him up like a mummy.
After we spent 9 hours in the hospital yesterday for the last day of chemo, we now go back to the hospital for an immune booster injection. Two more for Wednesday and Thursday we will take home, which I will inject myself.
So we have at least two days hospital free until Friday, even if not painless ... Friday we will have a blood count.
Actually, I thought I was pretty good at it. However, it seems that Ilais unreliable motor skills combined with a touch screen gives him a big advantage.
I have to go to the car with Ilai at least four times a day so that he can let off steam. He just loves doing everything we do, and cars are the greatest thing for him anyway
Today Ilai played in the garden all day and finally enjoyed playing and running outside without being connected anywhere... as it should be. Just doing what kids do. Unfortunately much too rarely...
Despite the many chemos in the last few days, Ilai has so much fun and energy left. Now we are all very much looking forward to two days without hospital even though he still gets three medications and oral chemo at home every day.
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