Phase 1 RIST completed

Hi Everyone,

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.

Relapse again

On June 10th we came to Greifswald, Germany, for the 4^th 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):

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.

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