Saturday 12 May 2012 - 18:10 (Randy)

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).

Sunday 18 March 2012 - 19:04 (Randy)

Tuesday 28 February 2012 - 20:55 (Randy)

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

Wednesday 22 February 2012 - 16:35 (Randy)

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

Tuesday 21 February 2012 - 17:39 (Randy)

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

Thursday 10 November 2011 - 02:25 (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.

Sunday 22 May 2011 - 11:33 (Randy)

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

Thursday 10 February 2011 - 23:49 (Randy)

Hello everyone,
Want to let you know that we heard good news this morning. After 2 rounds of the trial chemotherapy drug "Totem", the recent scan showed much improvement. Only one small spot could be seen this time.

Hannah will continue with the Totem chemo 1 week a month for the coming months. She seems to handle it well with few side effects. She is feeling well and of course riding horses twice a week..!

After our last update at the beginning of December, when we found out Hannah had relapsed, we are very pleased to be able to share this news with you.

Thursday 16 December 2010 - 01:19 (Sam)

Hello Everyone,

Sorry for the amount of time that passed since the last update, we have been very busy enjoying life outside the hospital. Hannah is going to school full time, and participating in all of her old activities including, of course, horse riding and sushi! Also, I have been recording Hannah singing, which she enjoys, and has a great talent for:
Hannah takes an interest in baking, and judging by her latest batch of croissants we enjoyed last night, she is mastering the art of cooking very quickly:

Unfortunately, the scan results that came back on wednesday the 8th of december indicate that Hannah has relapsed. We were all very taken by surprise; Hannah seems very fit and energetic.
Hannah is determined to keep fighting, and she will be starting a new experimental chemotherapy drug on Monday.

We appreciate all the kind thoughts and prayers from all of friends at this difficult time.

Sam

Saturday 21 August 2010 - 14:27 (Randy)

Hi everyone,
This update is being written by Hannah. I am back to school, and I am doing well. I went horse riding a few days ago for the first time since last October and really enjoyed it. I rode on Catootje - photo above. Over the summer I went several times to a place called Dutch Water Dreams where you can go bodyboarding indoors. Was great fun and Sam enjoyed going there, too. Sam managed to even be able to go onto his knees against the 50km water.

I'm off to ride my bike to school now and will write more soon.

from Hannah

Sunday 04 July 2010 - 19:08 (Randy)

Hello everyone,
The time has flown by since we left Philadelphia a few weeks ago, and we are now in England, visitng family. Best news of all to report; Hannah's most recent scans were all fine and showed no measureable sign of disease. We are so delighted about this and hope that the small amount of the immunotherapy she had was enough to make a difference. Hannah has been enjoying our trip and is feeling better and stronger everyday.

Last week we were in Wells, Somerset, where Sam goes to school. We heard him play in his school's annual jazz picnic (photos attached). Was great to hear him (we've missed that this year) and he played with much confidence and maturity. Hannah was in Cornwall after that and went surfing (bodyboarding) everyday. She enjoyed that enormously.

Thanks again to everyone for your wishes for Hannah.

Tuesday 15 June 2010 - 13:39 (Randy)

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

Monday 26 April 2010 - 15:31 (Randy)

Hello everyone,
We are deeply disappointed that Hannah can no longer receive the immunotherapy. She had more allergic reactions during the 2nd round of treatments and the doctors here, after much discussion, have decided it is simply too unsafe for her to continue. These reactions can potentially cause blocking of the airways which can be very dangerous. We are shocked by this developement as we truly believed they would find a way around the reactions she had during the 1st round of treatment. They tried 4 different antihistamines and steroids but even these could not stop Hannah's body rejecting the antibodies. Unfortunately there is a small group of children this happens to and no solution to this problem has yet been found.

Once again we would like to thank the many people who have been so helpful to us. We were (and still are) really enjoying being in Philadelphia and were very much looking forward to the coming months here. In a very short time we have made many good friends who we will miss.

We will continue to update the blog to let you know how Hannah is doing.

Wednesday 31 March 2010 - 05:05 (Randy)

After the months of organization to get Hannah here to the Children's Hospital of Philadelphia, she has finally undergone the first round (of 6) of immunotherapy. The antibody treatment lasted for 4 days. There are many side effects associated with this and Hannah was not immune to them. On the first day of infusion Hannah had intense stomach pain though was able to get through the 10 hours of treatment. The second day was more difficult; after 2 hours of the infusion she had much itching and had to be given extra antihistamines. The 3rd day was unfortunately much worse as Hannah had a severe allergic reaction to the antibodies (which are part mouse and part human) and her face swelled up dramatically. The infusion had to be stopped and she was taken to the intensive care unit. The antibodies were given again on the 4th day, at 1/2 tempo, with extra anti-allergy medication given beforehand. Hannah managed to get (almost) all the way through the infusion - she did begin itching after about 17 hours and the infusion was stopped, though she received most of the dose. The next round of immunotherapy will begin in about 2 weeks time.

Friday 19 March 2010 - 13:48 (Randy)

This past Monday Hannah was dignosed with shingles (gordelroos, in het Nederlands). On Sunday she had pain in her side and one small dot that itched. The one dot became several overnight and we pointed this out when she was in the hospital for the bone marrow test in the morning. It was soon clear that this was shingles, probably a result of the radiation which had just finished a few days before. As the immunotherapy must start on time next week, she was admitted immediately to the hospital for IV treatment of the virus. The shingles rash has spread impressively in the 3 days following and doctors from various departments are keeping a close watch on this.

Friday 12 March 2010 - 20:37 (Randy)

Hello everyone - I apologize for the delay. Have been back in Philly now for a few days since the great experience we all had last Saturday evening at the Concert for Hannah in Rotterdam. Janine Jansen played beautifully, and we were very lucky to have our own Yannick Nezet-Seguin conducting. Everyone I spoke with afterwards was deeply moved by the entire evening. Here is a report of the concert made by TV Rijnmond, Netherlands:



Thanks again to everyone involved (both playing and attending) in this special concert!

Saturday 27 February 2010 - 22:16 (Randy)

Our first full week of treatment is behind us now. Hannah had radiation every day. Quite uneventful, really, as the appointments lasted only 20 minutes or so per day. Next week should be the same and the week after as well.

We moved into the Philadelphia Ronald McDonald house this past week, too. Hannah really loves it here as there are other children to play with and also a pool table, air hockey, table football and more... Her pool game has improved enormously the past week and yesterday she even beat my friend Sam Ruttenberg, who himself is quite a good pool player...! The Ronald McDonald house does a very good job of entertaining the children, too. After dinner they often have either a magician, dogs to play with, hand crafts and other fun things which the children love.

It has snowed here again the past couple of days so Hannah has been outside stomping through the highest snow drifts she can find!

Saturday 20 February 2010 - 16:49 (Randy)

During the month or so before we came for treatment to Philadephia we had an amazing team of remarkable people (both in Holland and in Philly) who assisted us in every way. 2 nights ago we were able to have dinner together and everyone was able to meet. While we were struggling with Hannah's health in December/January, Tammy Fine emerged as our 'guardian angel' in Holland and she flew over especially for this. We had an amazing evening with everyone who had been so helpful to us; Jeff Benjamin, Tamara Nuzzaci, Ronnie Polaneczky and Lee Shlifer. We were delighted to meet Jay Scott, executive director of Alex's Lemonade Stand, chefs Marc Vetri and Jeff Michaud, and Ronnie's daughter, Addie. Michael Fine, our artistic director in Rotterdam came down from NY for the evening and my mother, Carol, was there, too

Wednesday 17 February 2010 - 23:17 (Sam)

Monday 15 February 2010 - 04:19 (Sam)

Monday 15 February 2010 - 04:14 (Sam)

Saturday 13 February 2010 - 21:10 (Sam)

This is the first post of Hannah's progress blog! Tomorrow we are departing for Philadelphia which will be very exciting for all. We should arrive by late afternoon, and go to the hotel and settle in. Hannah is very excited and nervous at the same time. The flight will be around 9 hours long, which does not seem to phase her at all, her being already very well travelled. She is looking forward seeing her grandmother, Carol, and going to the International House of Pancakes! Also, meeting the new nurses that will care for her over the coming six months is something she is very inquisitive about.