We just wanted to let you know how Hannah is doing. The past 8 weeks Hannah has been on the chemo protocol RIST, in Greifswald, Germany. This is fairly intensive and the first weeks of this were very difficult mainly because of the side effects. We ended up staying in Germany for several weeks before Hannah improved enough and was able to go back to Holland. Luckily she was back just in time for pony camp which she enjoyed very much (photo attached). It was quite amazing to see her back riding after the last setback. Of course she is lucky to have a lovely pony in Griefswald (Bella) and teacher (Susan) that are always ready to give her a lesson if she feels up to it but she wasn't really well enough to ride when we were there. The chemo has really reduced her general fitness and she has lost some weight. After pony camp we drove back to Greifswald for the next Irinotecan then flew to England for a few days by the sea in Cornwall. All her cousins and Grandma were there. Despite the terrible weather we had a great time, Hannah spent hours in the sea everyday which improved her appetite more than any medication so far. We didn't even have to nag her to eat!
Although the pain in her arm has been gone completely for some time now it was still tense waiting for the next scan results on 17 Aug. They showed a great improvement with around a 50% reduction in tumor. Dr Lode was very happy with this and the news has given us all a lift, especially Hannah. Now she will move on to phase 2 which means 2 weeks of Rapamune/Sprycel between each Irinotecan/Temodal week. To reduce the travelling and disruption for us all, Dr. van Noesel is arranging for Hannah to get the next few Irinotecans at Sophia hospital in Rotterdam. Hopefully this will be a successful collaboration with the doctors in Germany. We will be back in Griefswald in a couple of months for a reassessment. We have become part of a big 'family' there of children and parents all fighting the same battle so it feels slightly strange not to be returning next week but at the same time great to be back at a familiar hospital with the lovely nurses and hardly any language misunderstandings!
Hannah is looking forward to starting school this week and is feeling well in general. Several recent photos are attached.
Hannah is looking forward to starting school this week and is feeling well in general. Several recent photos are attached.
