The blood values ​​are there and HOORAY the values ​​are all back topp. Even the liver value, which was last increased still minimal, is again perfect. Bilirubin is dropped again. Still about 8 weeks and then our girl is 1 year in remission.

When I look back it reads all like a thriller. But it is in fact our lives.
Better than any book, right?

Time for a short Résumé:

Our Princess still has pain every single day. Sometimes lighter, sometimes violent, but always present. This pain is now with us jump pain, because for example it begins in the left wrist suddenly then is gone and it hurts right knee, then the pain will return to the ankle, etc.

Since she is taking Ursofalk, the colic are not surfaced. Now and then a distended abdomen and also sometimes a little stomach ache, but these bad colics are gone.

So little absences this school year our girl did not have for 3 years.

The fatigue is unfortunately still part of our everyday life. Sometime you can run it a little rank, sometimes it wins and our girls need increased sleep and rest.

Infections have lost its terror for us. We get very good at home now and if not, we have come of hospital professionals that all no longer brings us from the rest.

Since December our princess has decreased by methylphenidate 7 kilos, because the drug stops the feeling of hunger, which is funded by the prednisolone way.

We are still a very tight unit and enjoy our family.

Here's a word for people who are still at the beginning of this path. Try to keep stress of yourself. People who simply can not accept that with your clock is ticking differently now (have to), just because you can not see the disease include, are definitely not the people to whom you should waste your strength. It's hard, yes. This disease forces you and your immediate family to an entirely different rhythm of life and some goals and desires in life are no longer permitted or feasible. BUT! If a way is not feasible for you is out, you'll find another way, perhaps even more beautiful for you and you had not found it without this detour.

Begin to live positively and see at all from the good side. Hospital stays are goofy, clearly no question, but you can close very great friendships that otherwise would not have been there. You can find in all a good side, they can be seen. And if there is even a low point, give yourselves a "Today I hate my illness" day with all the trimmings. Escape, cursing, crying. The next day you stand up, knocking off the dirt and carry on. You can do that! We can do it well.