Getting ready to leave Philly...

Hello everyone,
First of all sorry for the long delay since my last post. We have gotten over the disappointment that Hannah could not continue with the immunotherapy. As you can imagine this has not been easy after the massive effort that went in to making this possible. Hannah has been taking a high dose of a drug called Accutane which has various unpleasant side effects. As usual Hannah does her best to cope very well. Since the immunotherapy was stopped Hannah has has intensive physical therapy to strengthen her muscles, help her walking, and improve her general condition. We have been very impressed with the facilites and the expertise in this area here at the CHOP. She particularly enjoyed the sessions in the swimming pool (she loves the pool that has an adjustable bottom so you can make it any depth!).

It has been especially good for Hannah to have spent time with children from other (international) famlies here fighting the same battle. One of the English girls, Robyn, even looks so much like Hannah that everyone thinks they are sisters!

We are happy to report that Hannah has been making steady progress and is looking forward tremendously to coming home as we all are.

This week she has many scans and tests and our last appointment will be this Wednesday. This is very stressful as are all appointments following scans. We are very grateful to have one of the world's leading specialists, Dr Maris, to discuss the results with and to advise us.

I will upload new photos now, too, on the photo album page, so you can see how nicely Hannah is doing (she has a lovely short hairstyle which we think really suits her!).

Tonight we will be attending the Great Chef's event, which will benefit Alex's Lemonade Stand, which is a major foundation here in the USA for neuroblastoma research and support for neuroblastoma patients.

Thanks again to everyone for keeping in touch with us and for your wishes. Will write more when we are back in Holland.

Randy