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:
For about a week now, the thrombosis in the heart catheter, which repeatedly caused Ilai pain and the risk of a stroke or heart attack, has finally gone. Even though our little superhero had decided in the meantime to relieve us of some of this burden and to prick his own thrombosis injections into his leg because he didn't want his mom to be sad if she had to hurt him, we are very happy that this has come to an end.
We are also very pleased to report that the radiation seems to be having an effect as his eye is slowly opening again, which indicates that the pressure from the tumor on the eye is easing. Now we have to keep our fingers crossed and hope that the chemotherapy will do the rest and will continue to fight the tumor and finally regress it. Ilai is happy to go to the radiation center every day, because they make the process before the necessary anesthesia as beautiful as possible for him, play his favorite music and dance with him and give him a balloon as a reward when he wakes up.
We are also very happy to have finally found a furnished apartment in the immediate vicinity of the hospital, since this saves us the daily commute between our home and the hospital, which can be several times a day, and thus about 100 kilometers per one-way trip and, depending on the traffic, one to two hours of travel time. In addition, in emergencies we can be in the emergency room in the shortest possible time, which has proven to be a great blessing, especially in the last few days.
Unfortunately, Ilai had considerable problems with his stomach tube and heart catheter, which are used to administer medication, at the beginning of last week. The gastric tube was blocked several times and could not be laid functionally even after several attempts, some of them under anesthesia. Another problem is that the cardiac catheter probably slipped in position due to the long time it was in place and was also narrowed due to the thrombosis. Since Ilai hardly has any veins left that would allow a new access, we are faced with a major problem here. Unfortunately, luck was not on our side in the next few days either. Ilai got a high fever and had to be treated with antibiotics and observed in the intensive care unit for several days. His blood values also deteriorated increasingly and the number of white blood cells sank threateningly, so that he received several blood transfusions in addition to the countless daily medications. The worsening of his condition ultimately meant that his irradiation had to be suspended, which, as the past has shown, is basically one of the worst things that can happen. Fortunately, he has now been fever-free for two days and was able to start radiation again today. However, since a new attempt to place a gastric tube failed today as well, the consideration of placing an artificial access to the stomach is pending. However, since this is only possible when his blood values have reached an uncritical level, we will remain in the hospital until then so that Ilai can be supplied with sufficient fluid via a drip despite his lack of appetite and the possibility of feeding through the tube. Meanwhile, we hope that the gastric tube cannot be moved only because of swelling or inflammation of the esophagus and that this has nothing to do with a tumor.
Finally a nice story:
Yesterday Ilai had the first contact with a child his age. He was so excited and the two of them, a little girl who also has a neuroblastoma, ran through the whole intensive care unit holding hands and beaming with joy and had a lot of fun. He was so infinitely happy! We thank God for these beautiful moments, when he was allowed to be a child!