12 May (Rachel)
After 3 weeks at home we returned to Germany for the 2nd cycle, this time half dose IL2 but whole dose antibodies. Hannah tolerated this very well , just some pain occasionally and the usual extra 3 kgs of fluid retention. We spent the first week staying at the Elternhaus (parents house) which was unusually quiet, especially over Easter weekend.  We did visit a stable owned by Sandra Engelman. It was freezing cold, windy and sleeting but lots of lovely horses!.The second week she stayed in hospital. The main problem for her was boredom. On Saturday the doctor could see we needed to escape so we left early then came back later to change the portable pump she has to wear for the next 5 days. It was removed on Thursday at Sophia.
Unfortunately on the drive home our car started making strange noises. We made it to a garage in Lubeck but it was impossible to repair so after a long wait we rented a car to get home. It was a very long a tiring journey but luckily Hannah was feeling ok.
Now we have to buy a new car!
Randy, Sam and Hannah flew to St. Louis for a visit to Oma, Randy's mother which they both enjoyed a lot. On the way home there was a stopover in Philadelphia, just time to see some friends from our stay there 2 years ago.
Immediately we left for Greifswald again.
As I write Hannah has finished the first week of just IL2 injections , this time full dose. She has had an allergic reaction this time (like many children) but manageable with medication. In fact by Friday it seemed like she was getting used to it. Next week full dose antibodies as well.
 Today Hannah had a riding lesson from the wife of the had surgeon from the hospital. She is American (so no language problem) and a wonderful teacher. Gradually we are getting to know this area and make some friends. There are many international families here, more arriving all the time, and all neuroblastoma children.Sometimes the department is so busy you can wait for hours but each child is different so they are constantly assessing and discussing what is the best thing to do.The doctors work very long hours.
 Certainly now spring has arrived with blossom and green trees, Greifswald seems much less grey. I am even beginning to appreciate the peace and total lack of things to do, though I have a feeling next week will bring some excitement when Hannah gets the full dose of IL2 and antibodies for the first time.

This is Hannah cantering on Bella without a saddle and stirrups during her lesson.

This part of Germany is flat with large skies and lots of trees. In the distance you can see Hannah walking Bella back to her field with Susan (her riding instructor).

1st round of immunotherapy complete

We are pleased to say that Hannah was able to tolerate the immunotherapy treatment in Greifswald. She has now finished the first cycle of the 5 that are planned. She was given a reduced dose because of the allergic reactions she had in Philadelphia, and the dose will be increased gradually during the following cycles. We returned home last week with the antibodies still going in via a portable 'pump'. The pump was removed after a few days at the hospital here in Rotterdam.

Hannah is feeling well, although she did have some pretty intense pain towards the end of the antibody infusion. She is hoping to go horse riding tomorrow for the first time since we went to Germany a month ago.

We are planning to go back to Greifswald at the beginning of April for the next cycle of immunotherapy and will write more then to update you with her progress.

Thank you to everyone for thinking of Hannah!

Randy

Treatment resumed

In my last update Hannah had to stop the treatment here in Greifswald, Germany after 2 days because of her persistent cough. She has now resumed the therapy as of yesterday. The first week involves a daily injection in her leg of a drug called IL2. She gets this for 5 days and next week she will start the antibody infusions.

We are all staying now at the "Elternhaus" which is for parents of NB children at the hospital here. There are people from many different countries here for treatment.

The photos above are from a place close to Greifswald called Wieck. We were there 2 days ago. It is on the Baltic Sea and very picturesque! Seems to be the place to go around here for a nice walk where you can see many boats and beautiful views over the water.

Will write more as we get further into the therapy.
Randy

Treatment delayed

As I mentioned yesterday, Hannah has had a bad cough which has still not cleared up completely. As a precaution she is taking antibiotics and today it was decided to stop the IL2 injections and wait until next week to resume the therapy. This means we will be here a week longer. Hannah will still have to go to the hospital every day to be checked (and play Wii with the other children - she won by miles today!). In the meantime, as Rachel is also under the weather, Sam and I will be going to stay at the 'Elternhaus' which is like a Ronald McDonald house here, and Hannah and Rachel will stay here at the hotel across the street from the Hospital. Will write more soon!
Randy

Treatment in Greifswald, Germany

Hi everyone,
After a year on the Totem chemotherapy, which Hannah did really well with, we are now continuing treatment in Greifswald, Germany. We are going to try again with the immunotherapy, which Hannah could not receive the entire course of in Philadelphia due to allergic reactions.

We arrived in Greifswald 2 days ago, after a 10 hour train journey from Rotterdam. We enjoyed the ride - photos above!

Yesterday Hannah had her first day at the hospital here. Some tests were done and as she has been under the weather with a bad cough, an x-ray was taken, too. She has antibiotics to help her get over this. She also had her first part of the therapy which is a daily injection in her leg of a drug called IL2. She will have this for 5 days and next week will start with the antibodies.

Will write more soon to let you know how the treatments are going, and thank you as ever for your support and wishes!
Randy

Update from Randy

Hi Everyone,
My apologies for not updating for a while. I am pleased to be able to say that Hannah has been doing progressively better the past few months. She has responded well to the trial chemotherapy she receives 1 week every month. Hannah goes to school regularly and rides her beloved horses 2 times a week, too. The photo above was taken recently and shows how well she looks. Thank you all for your continued support and for thinking of Hannah.

Update from Rachel

Hello everybody,

Hannah is still on the TOTEM chemotherapy, usually 1 week in every 4. Apart from tiredness and muscle cramps she manages it very well.There have been a couple of delays because her bone marrow took longer than 3 weeks to recover so the dose has been reduced. Since then she is bursting with energy - going to school almost full time and horse riding. It's fantastic to see even if we are exhausted trying to keep up with her!

On April 9th she celebrated her Bat Mitzvah followed by a lovely party in Rotterdam. Many friends and family came from all over the world. The weather was unseasonally beautiful, the music for the party great (Sam's band from England)and Hannah was fit enough to really enjoy a very special day.
The following week she was treated to another special day by the 'Doe een Wens' Stichting, the Make a Wish organisation here. Of course it involved horses, including an incredible morning in Brabant with some special horses and their trainer then a visit to Anky van Grunsven, the 3 times olympic gold medal winner for dressage! Hannah met all the famous winning horses and came away with a much treasured saddlepad from one of them - signed of course!

Despite missing lots of school and fitting the tests in around scans etc., Hannah managed to score very highly in the CITO toets which means she has a place next year at the Bilingual department of Wolfert van Borselen secondary school. We are hoping that a reduced schedule of subjects and taxi transport there will make it possible for her to keep up with the class, but actually we are just very happy to be considering the possibility she will attend secondary school.

Thanks for all the cards and consideration from everyone. We are lucky to have so many kind people supporting us.

Rachel