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Update September...Radiotherapy almost done

Hello dear ones,

please excuse the big gap between our updates, unfortunately it was again a turbulent time. If you want to learn more between the single updates, please have a look at our new Instagram account: @ilaiguthgermany

In order to find a beginning and make it more comprehensible, we summarize the events as chronologically as possible for you:

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Summary of the last days

Ilai was admitted to the intensive care unit for a total of 38 days due to his serious condition. During this time he received two cycles of chemotherapy and was subsequently discharged!

The result of the last reassessment showed a significant improvement in facial bone lesions. However, the tumor behind the right eye remained almost unchanged, so that he will start radiotherapy on Thursday, September 3rd.

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Preliminary MRT result

We have not yet received a complete result, as it still has to be evaluated completely.

However, the doctors said that in any case it is more positive than negative. In many places it has improved even if it has grown a little bit in one place.

As soon as we have more details, you'll hear them. Just this quickly to take the edge off.

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Endlich daheim, auch wenn nur kurz

Nach 38 Tagen im Krankenhaus, einer fünfseitigen durchgeführten Medikamentenliste, mehreren Bluttransfusionen und glaube sechs Narkosen sind wir endlich seit Donnerstagabend wieder daheim.

Der Chemoblock ist fertig und Ilai hat mittlerweile seinen neuen Katheter bekommen, welche aber wahrscheinlich nicht sehr lange halten wird. Die Vene, welche sie benutzt/gefunden haben, ist sehr dünn und somit die Funktionsdauer des Katheters eher limitiert.

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I'm fine so far...

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

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At least the fever is gone

On Monday, Ilai had another brief bout of mild bacteremia, which was immediately treated with medication. I think he is rid of this one now.

Because of this, the catheter must unfortunately still be removed on occasion. But the doctors would like to finish this block.

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Update Saturday - Sunday:

Actually I always wanted to make only short updates but this is a bit difficult at the moment because too much happens.

Saturday Ilai woke up with a swollen eye because the tumor is pressing on the eye from behind.

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The days off became intensive care.

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.

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We have a lot to tell...

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.