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

Disappointment

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.

Hannah finishes the first round of immunotherapy.

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.

Hannah comes down with shingles

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.

Concert for Hannah is a huge success!

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!

First week of radiation

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!

Dinner with our 'team' at Osteria

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

The place was Jeff and Marc's Osteria, recently praised as the best restaurant in Philadelphia. The food was delicious and we had a private table in the kitchen. Even though we met many people for the first time, it felt like getting together with old friends. We are lucky and blessed to have had so much support from these remarkable Philadelphians.

Philadelphia

Hannah continues to amaze all of us! We arrived safely on Sunday night, and settled into our hotel. The next morning (seemingly unaffected by jet-lag), Hannah insisted we go to a pancake restaurant for breakfast. We all ate to our hearts content on the mammoth sized portions of food!

Philadelphia has really opened its arms and welcomed us. We have been invited to several of the finest restaurants in the city, of which one was a sushi restaurant which went down particularly well. After much planning, we had our first appointment with Dr. Maris today. We discussed all that Hannah has been through since her diagnosis last June and he tells us about the immunotherapy treatments that Hannah will be having.

Unexpectedly, he said that he wants Hannah to undergo 12 radiation treatments before she can begin the immunotherapy. We also had an appointment later in the day with radiation oncologist Ramji Rajendran. He explained many details to us and tomorrow Hannah will have a 'simulation' for the radiation. The radiation will most likely start at the beginning of March.

Here are some more pictures in Philadelphia!

Hannah in IHOP

Hannah and her grandmother, Carol, in the very modern sushi restaurant Pod..!

Flight To Philadelphia

As I am writing this, we are on the plane, somewhere over the atlantic. We got up early this morning, and left for Schiphol at 9:15, only to arrive and be told our flight was delayed until 4.00 PM. We were however given access to the airline lounge in which we relaxed and rested before our flight. Hannah of course insisted on buying sushi for lunch, which was very delicious. Hannah is coping amazingly (she has more energy than I do). Whilst my parents sleep, she plays cards with me, reads, and plays her favourite horse game on the laptop. I will post some pictures I took when in the lounge/on the plane!

Departure

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.