On June 10th we came to Greifswald, Germany, for the 4th
round of Hannah's immunotherapy treatments. Towards the end of the 3rd round of immunotherapy last month, she had an allergic reaction and the treatment had to be stopped a day early as her face became very swollen and she was having difficulty breathing.
Since then she had been doing well, except for
increasing pain in her left arm. We were so much hoping that the pain was a
side effect of the accutane she has been taking. She has never handled the
accutane very well. To our great disappointment, the mibg scan showed a new tumor by her neck. The nerve roots are
being pressed on which is causing the pain and numbness in her left arm. Dr Lode and Dr Einsiedel recommended that we stop immunotherapy and begin
immediately on the chemotherapy protocol RIST (Rapamune, Irinotecan, Sprycel, and Temodal). We spoke with Hannah about this
and within minutes Hannah began the chemo. It all felt like a rerun of 3 years
ago, as Sam was in England for an important exam, just like then. This time we decided to delay telling him the news until afterwards.
Hannah has now been on the RIST for 3 weeks and the pain her arm is much better. Unfortunately RIST is quite intense for Hannah, and she quickly becomes dehydrated requiring IV liquids which mean long days in the hospital. Sam is with us now, a great help as always.
Sometimes we are able to get out and do some nice things, like walking on the beach close to here, and playing mini golf (recent photo below):
Sometimes we are able to get out and do some nice things, like walking on the beach close to here, and playing mini golf (recent photo below):
Until the side effects of Irinotecan are more under control we have to stay in Greifswald but hopefully we will be able to return to Rotterdam soon for a few days. Thank you as always for thinking of Hannah.
