With the deepest of sadness we are writing to tell you that our beautiful, bright and lovely Hannah passed away peacefully yesterday evening, August 11, 2013 at 8.45pm. We will always love her dearly. She will be forever in our hearts.
Service for Hannah will be held at the Algemene Begraafplaats Crooswijk in Rotterdam on Wednesday, August 14, 2013 at 1.30pm.
Kerkhoflaan 1, 3034 TA Rotterdam
Randy, Rachel, and Sam
Tot ons allergrootste verdriet willen wij u laten weten dat gisterenavond, 11 augustus 2013 om 20.45, onze mooie, lieve Hannah is overleden. Ze zal voor altijd in onze harten en gedachten blijven.
Plechtigheid voor Hannah zal plaatsvinden op de Algemene Bergraafplaats Crooswijk te Rotterdam, op woensdag 14 augustus 2013 om 13.30 uur.
Kerkhoflaan 1, 3034 TA Rotterdam
Randy, Rachel, en Sam
August 10, 2013
As you know Hannah suffered bleeding in her head (subdural hematoma) last week. After the weekend it seemed Hannah had amazed the doctors once again by making what seemed to be a good recovery so plans were made to go home. Unfortunately her head began hurting again last Wednesday. As a result of all of this pain and pressure on her brain, pain medication had to be increased to the point where she can no longer survive. She has been in a very deep sleep since Friday night. We feel lucky she has no pain and is resting peacefully. We wish so much that we had better news. Please know that Hannah is comfortable and surrounded by her loving family and friends. Randy, Rachel, and Sam
Zoals u weet heeft Hannah een bloeding in haar hoofd (subdural hematoma) vorige week gehad. Na het weekend bleek dat Hannah nog een keer de artsen verbaasd had door een goede herstel van deze te maken. Wij waren van plan om naar huis te gaan. Helaas kreeg zij vorige week woensdag weer pijn in haar hoofd. Als gevolg van deze pijn en druk op haar hersenen moesten de pijn medicatie verhoogd worden tot de punt dat zij niet meer kan leven. Zij is in een zeer diepe slaap sinds vrijdag avond jl. Wij voelen ons gelukkig dat zij geen pijn heeft en kan rusten. Graag wensen wij dat wij een betere bericht hadden. Wij willen dat u weet dat Hannah comfortabel is en heeft haar familie en vrienden om haar heen die zoveel van haar houden. Randy, Rachel, en Sam
August 3, 2013
A lot has happened in 1 week and before it becomes too complex to explain everything we wanted to send you this update. This past Sunday evening we received very difficult news that Hannah is not doing well at all. Totally shocked, we stayed the night in the hospital and went home Monday with a lot of pain medication.
Unfortunately this past Thursday, Hannah began having severe headache and vomiting. We took her to the hospital where at first they suspected too much opiate from the pain medication, but as she was no better in the morning (Friday) a CT scan was made of her head. This showed that Hannah has had bleeding in her head which is causing the excruciating headaches. She was started on a medication to take away the swelling and we are waiting to see what the effect of this will be. For now she is quite sedated and resting.
On a positive note, after we returned from the hospital this past Monday evening, the stables arranged that Hannah?s favorite pony, Pringle, could come over to our home for a visit! Totally amazing! Some photos below from this lovely moment for all of us, together with the other member of our family, Pringle.
Tijdens de afgelopen week is er veel gebeurt. Voordat het te ingewikkeld wordt om alles uit te leggen wilden wij u updaten. Zondag avond jl onvingen wij moeilijk nieuws dat het helemaal niet goed gaat met Hannah. Geschrokken, bleven wij de nacht in Sophia, en gingen wij maandag met veel pijn medicatie naar huis.
Helaas donderdag jl heeft Hannah veel hoofdpijn en braken gehad. Wij zijn naar Sophia gegaan waar eerst dachten ze de oorzaak teveel opiaat was van de pijn medicatie, maar omdat ze vrijdag nog niet beter was, werd een CT scan van haar hoofd gemaakt. Deze liet een bloeding zien. Zij is begonnen met een medicatie om zwelling te verminderen en wij wachten nu op de effecten van deze. Voor nu heeft zij medicatie om te slapen.
Echt leuk voor ons was maandag avond toen wij terug uit het ziekenhuis waren heeft de manege Hannah?s favorite pony, Pringle, naar ons toe gebracht! Echt geweldig! Een paar foto?s hieronder van dit mooie moment, samen met onze andere gezinslid, Pringle.
July 22, 2013
When we wrote recently Hannah was having severe pain in her side, which a CT scan confirmed is from a lung infection. She was in the hospital having antibiotics for almost 2 weeks trying to get this under control. Unfortunately she has little immune system of her own, which combined with the antibiotics is necessary to cure this. For now Hannah has been able to come home where she is still having the same antibiotic treatments, and we are hoping that the stem cells she recently had will start to work so that she can improve.
Meanwhile, being Hannah, she does her best not to let this slow her down. Yesterday we went to the Rotterdam Open Snooker Tournament. I asked one of the organizers if it would be possible to take a photo of Hannah with the tournament trophy. Next thing we knew, the tournament photographer was there taking photos of us together with top referee and initiator of the tournament, Jan Verhaas (photo below), and with legendary snooker player Tony Drago. Before we knew it, there was a photo of us on the World Snooker website! You can see this at: http://www.worldsnooker.com/page/NewsArticles/0,,13165~3323914,00.html An amazing and memorable day!
For now Hannah is having the medication at home everyday and going to the hospital twice a week for check ups. Next week is pony camp which we are really hoping is going to be possible for her to attend.
Will write again soon and thanks as always for thinking of Hannah.
Randy and Rachel
Toen wij een paar weken geleden hebben geschreven heeft Hannah veel pijn in haar zij gehad. Een CT scan bevestigde dat de oorzak van deze pijn een longontsteking is. Hannah was ca 2 weken in Sophia opgenomen voor behandelingen met antibiotica. Helaas heeft zij weinig afweer, die samen met antibiotica nodig is om deze beter te maken. Hannah is nu thuis waar zij nog dezelfde antibiotica krijgt, en hopen wij dat de recent gegeven stamcellen binnenkort zullen aanslaan zodat zij kan beginnen op te knapen.
Natuurlijk wil Hannah deze haar niet terug houden van leuke dingen doen. Gisteren zijn wij naar de Rotterdam Open Snooker Toernooi. Ik vroeg aan de organisatoren of ik mogelijk een foto van Hannah met de toernooi beker mochten nemen. Ze hadden snel de toernooi fotograaf gevraagd foto's te nemen en dan samen met de bekende Rotterdamse World Snooker referee Jan Verhaas (foto hieronder) en met snooker prof Tony Drago. Was een magische moment voor ons, en World Snooker heeft een van de foto's op hun site geplaatst. Deze kunt u zien op: http://www.worldsnooker.com/page/NewsArticles/0,,13165~3323914,00.html Een onvergetelijke dag!
Voor nu heeft Hannah de medicatie thuis elke dag en wij moeten 2 keer per week naar het ziekenhuis toe voor controle. Volgende week is pony kamp en wij hopen heel graag dat zij fit genoeg zal zijn om deze mee te maken.
Wij schrijven binnenkort weer en dank u wel voor het denken aan Hannah.
Randy en Rachel
July 11, 2013
Much has happened with Hannah recently. It has been a few weeks since she finished the mibg therapy where she had to be alone in the room for 5 days. She had a good few weeks in between, and even won 1st prize in the horse riding competition 1 1/2 weeks ago (photo below). A week ago Hannah had stem cell transplant using her own stem cells that were collected earlier. She immediately had problems with blood pressure, too low and too high, so had to stay in the hospital. The next day we noticed that she had very yellow eyes and skin. Her liver functions were elevated so she had to stay longer.
Though home for a day, she began getting severe pain in her side, so back to the hospital. Unfortunately she developed a temperature and an xray showed that she has a lung infection. She was admitted to the hospital this past Sunday and we are still here. She still has severe pain in her side which doctors are trying to get under control. Today she had a CT scan which we will hear about soon. Will write again soon to let you know how Hannah is getting along.
Thank you for all of your cards and good wishes.
Randy and Rachel
De laatste tijd is er veel met Hannah gebeurt. Een paar weken geleden heeft zij de mibg therapie gehad waarmee zij alleen in een kamer voor 5 dagen moest zijn. Zij had een paar goede weken intussen, en won de eerste prijs in haar paardrijden competitie anderhalve weken geleden (foto bij). Een week geleden had Hannah een stamcel transplantatie, met gebruik van haar eigen stamcellen die eerder geoogst waren. Meteen had zij problemen met bloeddruk, te laag en te hoog, en moest in het ziekenhuis blijven. De volgende dag was zij erg geel geworden in haar ogen en huid. Haar lever functies waren verhoogd en dus moest zij langer opgenomen blijven.
Zij was een dag thuis maar kreeg veel pijn in haar zij en wij gingen terug naar het ziekenhuis. Helaas kreeg zij daarna koorts en een foto liet een long ontsteking zien. Zij is nu sinds zondag jl in Sophia opgenomen. Hannah heeft nog steeds zeer veel pijn in haar zij wat de artsen proberen onder controle te krijgen. Vandaag heeft ze een CT scan gehad en straks horen wij meer daarover. Wij zullen binnenkort weer schrijven.
Dank u wel voor de vele kaarten en wensen.
Randy en Rachel
June 9, 2013
In our last update Hannah was about to start chemo, the same chemo she had during 2011. This did not go through as her blood counts were not recovering enough (her bone marrow has really taken a beating with all of the treatments she has had during the past 4 years). We decided to do MIBG therapy instead which is a treatment she has not yet had. This therapy makes Hannah very radioactive and requires her to stay alone in a room for 5 days until the level decreases to a safe amount. We were in a room next to her and could communicate via a TV screen.
Hannah being the usual trooper she is got through it, though it does get quite tedious after a while. The MIBG therapy is very hard on the bone marrow so we are now at the hospital twice a week for blood transfusions. The plan is to have MIBG therapy again this week as this is generally given in 2 doses, with about 4 weeks in-between. After that she will have another stem cell transplant, using her own stem cells which were taken from her several months ago, and are in the freezer in the hospital here.
So this Wednesday we are back in the hospital for 5 days of talking back and forth via the TV screen! We are allowed to go in the room for a little while, to bring food in, etc, though we have to wear specials gowns, covers over our shoes, gloves, and beepers that measure radioactivity (and start beeping loudly when we get too close to Hannah...). Each time we leave the room we have to go to a special a machine which measures our level of 'contamination'! Hannah's ipad was still radioactive when she came out so we were not allowed to touch it for a week which she was quite pleased about!
Besides all of this Hannah is as usual over at the stables riding horses (Pringle, of course) as often as she can, and in general feeling pretty well. Today we went to one of the golf clinics she loves to go to - some photos from the day are below.
Thanks as always for thinking of Hannah and we will write again soon to let you know how she is doing.
Randy and Rachel
Bij onze vorige update was Hannah bijna klaar om met chemotherapie weer te beginnen, dezelfde chemo die zij in 2011 heeft gehad. Deze is niet doorgegaan omdat haar bloedwaardes kwam niet genoeg omhoog (haar beenmerg heeft veel gehad met alle behandelingen tijdens de afgelopen 4 jaar). Wij hebben besloten om MIBG therapie te doen, een therapie die zij nog niet heeft gehad. Deze therapie maakt Hannah zeer radioactief en moet ze dus in een kamer alleen zijn voor 5 dagen totdat de straling niveau genoeg gedaald heeft. Wij blijven in een kamer ernaast en konden via een beeldscherm met elkaar communiceren.
Hannah, de doorzetter, heeft het vol gehouden maar het is wel vervelend na een paar dagen. De MIBG therapie is zwaar voor de beenmerg dus wij zijn tegenwoordig twee keer per week in het ziekenhuis voor bloed transfusies. De plan is nog een keer MIBG therapie te doen deze week - dit is gebruikelijk 2 keer gegeven met ca. 4 weken tussen. Daarna zal zij nog een stamcel transplantatie ondergaan, met gebruik van eerder geoogste eigen stamcellen die bewaard zijn in een vrieskast van het ziekenhuis.
Dus woensdag a.s. zijn wij weer in het ziekenhuis (Daniel den Hoed) voor 5 dagen met heen en weer praten via de beeldscherm! Wij mogen wel eventjes haar kamer in om eten te brengen, enz, maar moeten wij wel speciale kleding dragen, hoezen over de schoenen, handschoenen, en piepers die de straling meten (en piepen hard als wij dichtbij Hannah komen...). Na het verlaten van haar kamer moeten wij naar een machine die onze niveau van 'besmetting' meet! Hannahs ipad was nog radioactief toen zij uit de kamer kwam dus konden wij het voor week niet raken, wat zij heel leuk vond!
Verder is Hannah zoals gewoonlijk zo veel mogelijk aan het paard rijden op de manege (Pringle, natuurlijk!), en voelt zich redelijk goed over het algemeen. Vandaag zijn wij naar een van de golf clinics gegaan waar Hannah heel veel van houdt. Een paar foto's van de dag zijn hieronder.
Dank u wel voor het denken aan Hannah en wij proberen binnenkort weer schrijven om u op de hoogte te houden.
Randy en Rachel
April 29, 2013
In our last update Hannah was having radiation treatment to try and stop a tumor that was growing into the spinal cord in her neck. We are pleased to say that the MRI, done this past Wednesday, showed improvement. The radiation has pushed the tumor back, as hoped. Hannah was, of course, delighted to hear this and we celebrated by going shopping for shoes and eating sushi. Han is scheduled to start chemo again this week. We are going to try the chemo that she had been on all during 2011, called Totem. She was supposed to have started the chemo already last week but unfortunately the count for her blood platelets was still too low to begin.
In general Hannah has been very tired during this past month and not feeling like her usual self. This is very likely due to having to take Dexamethasone, which removes swelling from the radiation area. The Dexa has well known side effects, two of which are increased appetite, and changes of mood. Hannah has experienced both to a high degree as well as legs that feel like lead weights. The medication was slowly decreased and finished yesterday, so we hope she will start feeling like the 'old' Hannah again soon.
2 recent photos of Hannah with Pringle below.
Bij onze vorige update heeft Hannah bestraling ondergaan voor een tumor die groeide naar de ruggenmerg in haar nek. Wij zijn blij te kunnen melden dat een MRI van woensdag j.l. verbetering liet zien. De bestraling heeft de tumor gedrukt, zoals gehoopt. Hannah was natuurlijk ook heel blij deze horen, en wij hebben het nieuws gevierd door te gaan winkelen voor schoenen en ook sushi eten. Hannah zal deze week weer met chemo beginnen. Wij gaan proberen met dezelfde combinatie die zij tijdens 2011 heeft gehad, die heet Totem. Zij zouden vorige week al beginnen maar deze moest uitgesteld worden omdat haar trombose nog te laag waren.
Over het algemeen is Hannah heel moe tijdens de afgelopen maand en voelt zich niet zoals gewoonlijk. Dit heeft mogelijk te maken doordat zij Dexamethason moet slikken. Deze neemt vocht weg van de plek die bestraald werd. De Dexa heeft bekende bijwerkingen, zoals toegenomen eetlust, en wisselende stemmingen. Hannah heeft allebei behoorlijk gehad, en ook benen die voelen als lood. Deze medicatie is langsaam afgebouwd en gisteren is gestopt. Wij hopen dat zij binnenkort weer als de 'oude' Hannah zal voelen.
2 recente foto's van Hannah met Pringle hieronder.
April 6, 2013
In our last update Hannah had switched to a new chemo protocol, though am sorry to say that this did not work as we had hoped. After the first chemo her blood counts went so low it took an extra 2 weeks for them to recover. During the 2 weeks she had increasing pain in her arm. An MRI last week showed tumor growing directly into her spinal cord in her neck. The chemo was stopped then after 2 days she started 5 days of radiation. Although the radiation only takes 1 minute, it was no fun. A mask was made that was fixed to the table to ensure she lay in exactly the same position each time and only the tumor was radiated. Hannah as usual didn't complain but was a little unhappy over Easter weekend because the hospital was deserted and dark. She must have been the only patient that was scheduled!
At first her doctor said she could not ride horses because of the risk of spinal cord injury, though one of the nurses (also a horse rider) spoke with him and said you can't keep Hannah from riding. This was the general view of everyone in the department so he relented and allowed her to ride (slowly and carefully) in a 'pas-de-deux' competition with her good friend, Lotte. They took 2nd place, and a trophy! All that after having a week of chemo and several days of radiation, including just before the event. Some photos below from the day.
The last 2 weeks have been tense with a visit to hospital almost everyday. It took a few days to get the right dosage of pain medication so she had no pain but was also able to stay awake! After that we had to report any change of feeling in her legs or arms. She has lost some strength in her arms and legs and a lot of confidence but it seems she has less or no pain now so we can start to reduce all the medication and hopefully the nerves that were compressed can recover.
Randy and Rachel
Bij de vorige update was Hannah begonnen op een nieuwe chemo protocol maar deze heeft niet gewerkt zoals wij gehoopt hadden. Na de eerste chemo daalde haar bloed waardes erg laag waardoor de volgende chemo met twee weken vertraagd was. Tijdens de 2 weken had ze steeds meer pijn in haar arm. Een MRI van vorige week liet zien dat een tumor groeit in haar ruggenmerg bij haar nek. De chemo moest gestopt worden en na 2 dagen is zij begonnen met 5 sessies van bestraling. Deze duurt maar een minuut maar was helemaal niet prettige voor Hannah. Een masker moest gemaakt worden die vast aan de tafel wordt gezet, die haar op exact dezelfde plek houdt tijdens de bestralingen. Hannah heeft zoals gewoonlijk niet geklaagd, maar was niet blij dat ze tijdens de paasdagen in een donkere ziekenhuis voor de behandelingen moest zijn. Zij was waarschijnlijk de enige patiŽnt die gepland was!
Haar arts zei oorspronkelijk dat zij voorlopig niet mag paard rijden omdat er een verhoogd kans is op letsel van de ruggenmerg. Een van de zusters (ook een ruiter) heeft hem gezegd dat Hannah moet nog paard kunnen rijden. Hij heeft uiteindelijk toegezegd, en een paar dagen later heeft zij, samen met haar vriendinnetje Lotte, voorzichtig een 'pas-de-deux' competitie gereden. Ze hebben de 2e prijs en een bekertje gewonnen! Dit na een week chemo en een paar dagen bestraling, ook net voor de competitie. Een paar foto's van de dag hieronder.
De afgelopen 2 weken zijn spannend geweest met een ziekenhuis bezoek bijna elke dag. Het duurde een paar dagen voordat wij de juiste dosering medicatie hadden, zodat zij geen pijn had en ook wakker kon blijven! Daarnaast moeten wij alle veranderingen van gevoel in haar armen en benen melden. Zij heeft wat minder kracht in haar armen en benen, en ook is haar zelfvertrouwen wat minder, maar wij kunnen nu de medicatie afbouwen en hopelijk kunnen de zenuwen herstellen.
After doing so well on the RIST for over 6 months, the recent scans from the beginning of February 2013 unfortunately show new tumor activity. This was difficult for us to hear as until now, the RIST protocol was showing improvement with each new scan. We have decided, together with Dr. van Noesel, to change to the chemo combination of Topotecan and Cyclophosphamide. Hannah had Topotecan 2 years ago which helped her then to go back into remission. Hopefully she will tolerate this new combination as well as the previous chemos. She has a great quality of of life, managing her energy so well that she does pretty much everything she wants to.
Hannah is still riding horses 3 times a week, and at the moment has gone to England for the weekend for her cousin's 18th birthday. Above is a photo of Hannah with her leased pony Pringle (her favorite!) She loves being at the stables and can easily spend all day there. She loves to help with the other girls that are horse crazy too.
Although she misses school regularly for hospital appointments, she is keeping up with the class well. She enjoys learning and sets very high standards for herself. Once a week she has a tutor at home to explain anything she might have missed and has help from the hospital education department during chemo weeks.
Despite all of the setbacks and treatments, Hannah remains happy and positive, and amazes everyone who knows her!
It has been a while since our last update and we apologize for the delay! Hannah has been doing really well the past few months and is enjoying going to school and riding horses. Last week we received better than expected news about Hannah's recent scans. They showed much improvement. We really were not expecting that as Hannah has had some pain again in her arm recently. We were very pleased to hear Dr van Noesel speak of a 'partial remission' and even possibly a 'very good partial remission'. For now we will continue with the chemo every few weeks here in Rotterdam, and will have more scans in January.
A real highlight for Hannah lately has been her leased pony 'Pringle', who she loves. She is at the stables often looking after him and rides now 3 times a week. This is not only fun for her, but it is also excellent for her general condition. She had a competition last weekend and won 1st place (riding Pringle, of course!)
We have been to England twice recently, the first time we stayed in Sam's town of Guildford, where he is attending the University of Surrey. As this is close to London, we went there with Hannah to see one of her favorite shows, Singin in the Rain. Hannah absolutely loved the show and it was great to see her enjoying herself so much. Recently we also had a weekend in London, arranged for us by the English charity 'Rays of Sunshine'. Hannah went to the TV show "Strictly Come Dancing" ("Dancing with the Stars" in the US). She had a great time there and met many of the dancers and stars. A photo of her on the set, below. Rays of Sunshine also arranged a really nice lunch for us at a top sushi restaurant and Han got to make sushi with one of the chefs, photo also below.
For now Hannah is feeling well and has lots of energy. We are also enjoying this good moment.
We hope you all have happy holidays and thank you as always for thinking of Hannah.
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.
On June 10th we came to Greifswald, Germany, for the 4thround 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).
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.
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
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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!
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!
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.
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..!