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

update from 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.

Sad News - Update From 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

Hello From Hannah

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

update from 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.

Getting ready to leave Philly...

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