24 May: Still all clear!

Lennard has undergone multiple tests again last week, and the results for now are positive: Lennard is still all clear!

Hoera! Schoon!

Hurray! All clear!

Every test is nerve wrecking, and we will never get used to them, no matter how often Lennard will have to through this.

The CT and MIBG scans are completely clear, they did not show anything out of the ordinary. The MRI on the other hand did show a build-up of fluids in Lennard’s hip muscle. The doctors are not sure what is causing these fluids, but Lennard has had trouble walking and of course the fluids might be related to that. So that will be investigated further.


A very different looking boy from the one who left for the US!

For now we are happy and relieved! But we have to remain cautious: Lennard is still quite weak and we know all too well which course of treatment awaits him this week… The future remains very uncertain.

It is hard to be so far away from friends and family in such difficult times. Fortunately, friends and family come over from the Netherlands to help out and distract Lennard and Judith, and they are loving it! Icecream with the grandparents, uncles who are letting you win you can beat at computer games, aunties who read to you in bed… it means that just for a little while, Lennard’s parents do not have to bear this terrible burden all by themselves.

This week we’ll first get the final results, including a bone marrow test, and hopefully we’ll find out more about Lennard’s hip. And yes, after that a new course of treatments is about to start… The fourth course is supposed to be the most difficult one, and it will start towards the end of the week. IL-2 en CH14.18 treatments will keep Lennard occupied for a total of 12 days, 10 of which in hospital overnight. During the last two courses Lennard had a nasty C-diff infection, and we are crossing our fingers for that to remain at bay this time. Thankfully, family is again on the way to provide much needed support and hugs.

And of course we have had some beautiful times, which we want to share with you as well. The pictures below and above this article were taken when Lennard, for the first time in five weeks, could, dared and wanted to climb and play. Hurray!
Hopefully we will see a good progress during treatment this week and the next, with Lennard climbing and playing again soon thereafter!


Lennard dares and is able to climb again!


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