Hannah finishes the first round of immunotherapy.

After the months of organization to get Hannah here to the Children's Hospital of Philadelphia, she has finally undergone the first round (of 6) of immunotherapy. The antibody treatment lasted for 4 days. There are many side effects associated with this and Hannah was not immune to them. On the first day of infusion Hannah had intense stomach pain though was able to get through the 10 hours of treatment. The second day was more difficult; after 2 hours of the infusion she had much itching and had to be given extra antihistamines. The 3rd day was unfortunately much worse as Hannah had a severe allergic reaction to the antibodies (which are part mouse and part human) and her face swelled up dramatically. The infusion had to be stopped and she was taken to the intensive care unit. The antibodies were given again on the 4th day, at 1/2 tempo, with extra anti-allergy medication given beforehand. Hannah managed to get (almost) all the way through the infusion - she did begin itching after about 17 hours and the infusion was stopped, though she received most of the dose. The next round of immunotherapy will begin in about 2 weeks time.

Hannah comes down with shingles

This past Monday Hannah was dignosed with shingles (gordelroos, in het Nederlands). On Sunday she had pain in her side and one small dot that itched. The one dot became several overnight and we pointed this out when she was in the hospital for the bone marrow test in the morning. It was soon clear that this was shingles, probably a result of the radiation which had just finished a few days before. As the immunotherapy must start on time next week, she was admitted immediately to the hospital for IV treatment of the virus. The shingles rash has spread impressively in the 3 days following and doctors from various departments are keeping a close watch on this.

Concert for Hannah is a huge success!

Hello everyone - I apologize for the delay. Have been back in Philly now for a few days since the great experience we all had last Saturday evening at the Concert for Hannah in Rotterdam. Janine Jansen played beautifully, and we were very lucky to have our own Yannick Nezet-Seguin conducting. Everyone I spoke with afterwards was deeply moved by the entire evening. Here is a report of the concert made by TV Rijnmond, Netherlands:



Thanks again to everyone involved (both playing and attending) in this special concert!