Home!

Maiken says it was easier. Rob says it was harder. Tobin says "grrrlllre". Another 25 hour trip is over, and I'm sitting at my desk at my house and thinking maybe it was a dream. Travelling makes all experience seem ephemeral. When we were in China seemed like we were there for a year, and now that I'm here it seemed like it lasted a heartbeat. We have returned and all of a sudden it is winter in Berlin. We are extraordinarily lucky that Ute and Wiebke are here once again to rescue us upon our return. We arrived home to an immaculate house, a delicious Daal soup, birthday cake, and our giant, comfortable bed. Ute is taking great care of Tobin most of the time so we can chill out a bit. We are happy to be home. The feelings that our mission was not quite complete remains, but we are settling in here and it will soon just be a question in the back of our minds. At the airport we were greeted by a couple of cameras from some people we know who are attempting to sell our story as a documentary to a German television channel. They came with us home and even after such a long trip we were able to give a short interview. The general feeling from China that we expressed is that we are still not sure what the stem cells will do for Tobin, but we trust the people who gave us this chance. This was the biggest question we had before leaving. Is this just a big scam? Are people just trying to take advantage of desperate people by utilizing all the hype about stem cells? After meeting the doctors and nurses and patients at the Beike clinic, we came away with the feeling that they all sincerely believe in what hey are doing. Now we are sure that we did the right thing once and for all. Now we will see what it does for Tobin. Thanks once again to all who made the trip possible. We are sending lots of love to all who supported us and we felt you were all with us in spirit during our time in China. And good luck to all our fellow patients and parents and all those who give them their hope and support. With hope and determination, we will all carry on. Now carry on!

4th Stem cell injection and Last Day in Hangzhou

The bags are packed and our last day in Hangzhou is coming to an end. On Monday Tobin received his last stem cell treatment by infusion. It took them three tries to set the IV which was pretty stressful, but the rest of the treatment went smoothly, and that was that. I guess at this moment we are feeling a little bit empty. The treatments are over and we don't have much concrete to show for it. We haven't seen any improvements except maybe that Tobin is a little more elastic and is sleeping better than when we first arrived, but this may be due to the fact that the whole environment here is more relaxed than at home. He hasn't gone out too much here and there is not all the running around and hustle bustle that he experiences at home in Berlin. We experienced the same thing in Mallorca. He was just in a better mood and slept better when were there because we were all that much more relaxed. We shall see how he does when we arrive home. We are also looking forward to seeing what his therapist says. We have an appointment on Monday, but right now it is all a bit anti-climactic. We feel all in all that the doctors here make very little effort to evaluate the patients before and after the treatment. The physical therapist did evaluate him before and after but she could not explain very much and her assessment was summed up by saying Tobin's tone has gone down and he needs less support to sit by himself. This was kind of inadequate as far as we are concerned but I guess the doctors here expect you and your own doctors to do your own evaluation. The only thing they do here is the stem cell treatment and that's it. The doctors do say that we should wait three months to say whether the treatment had any positive effects which is more realistic than expecting any changes in the three weeks since we have been here. So now we just go home and see what happens...

Tomorrow morning we leave at 6:30am for the Shanghai airport and will arrive in Berlin at about 10pm. We will post some pictures of the last couple of days after we get home. Wish us a good trip and see you in Berlin!

3rd Treatment

Just wanted to let everyone know that the third injection went very well yesterday. Tobin was downstairs in the operating room for about an hour which was a little longer than expected, but when the nurses finally brought him upstairs he was just laying in bed happily sucking on his pacifier. Unfortunately he didn't take a nap after the treatment so he was really cranky until he finally had a short scream session at 8pm. He was then in a good mood and was able to eat something and then go to sleep. The night was then relatively quiet after that. We were lucky because our Oregonian friends were up half the night with their son. We know how that feels though... We will write more soon. MRT

Excursions...

Well, we have made it out of the hospital a couple of times now. A couple times to downtown Hangzhou for Maiken and one time to the nearby lake Xiang. All in all downtown Hangzhou is nice, especially the area around West Lake. For the last couple of years the neighborhood and the city in general has really boomed, and you can see it in all the fancy restaurants and boutiques that have been built on the lake in the past seven years or so. We have posted a few of the best photos on our Flickr site.

The rest of the time we spend in the hospital or in its general proximity. Tobin goes in for his third treatment tomorrow. We are much more relaxed this time around since the first spinal went so smoothly. We will let you know how it goes.

On a side note, a spinal cord injury patient is staying two doors down from us and I got a chance to talk to him today. His name is Gabi Iordache from Romania and he is here for his third time. He had an accident diving into a river about twelve years ago after which he was paralyzed from the neck down. The doctors said it was permanent but after a lot of operations and therapy the feeling in his torso returned and he was able to raise his arms to shoulder level. Two years ago he started the stem cell therapy and he has seen some remarkable results. We have all been really motivated and inspired after hearing his story. He and his parents are really remarkable and their fight to rehabilitate Gabi gives us a lot of hope.You can read the full story here. It has been a really positive experience for us to talk to other people who are facing some hard circumstances with a real fighting spirit, some in very similar situations to ourselves. This maybe another key to why people who come here start to see such improvements. We can only hope that Tobin soaks up the positive vibes... see you tomorrow.

2. Stammzellbehandlung am Freitag, den 9.November

Familie Rohdenburg-Ramirez hat gute Stimmung! Das Baby hat seine 2. Stammzellbehandlung, dieses mal über das Rückenmark injiziert, mit Bravour hinter sich gebracht. Nachdem Tobin eine kurze Mittagspause gehalten hat, haben wir zusammen mit anderen Eltern aufgeregt auf dem Flur auf die Zellen gewartet. Das Flugzeug, das die Zellen frisch aus einem anderen Krankenhaus einfliegt, hatte aber leider Verspätung. Vielleicht auch zum Glück, so hatten wir genug Zeit uns mit der Situation mehr anfreunden und unsere Aufregung kam nur noch kurz einmal hoch, als Tobin mit seinem behandelnden Arzt Michael im OP verschwand, wo er eine Vollnarkose bekam. Nach 30min Wartezeit machten wir uns wieder mit dem Fahrstuhl auf den weg von der 20. Etage in die 3. Etage, wo der OP ist. Nur leider hielt der Fahrstuhl auf jeder Etage und als wir es endlich geschafft hatten, trafen wir nur noch einen Arzt ohne Tobin an. Der ist parallel zu uns mit einem anderen Fahrstuhl hochgefahren worden. TYPISCH ROB & MAIKEN! Als auch wir endlich bei unserem Sohn im Zimmer angekommen waren, hatte sich schon eine Schwester liebvoll um ihn gekümmert und nuckelte zufrieden an seinem Schnuller. Die nächsten 2 Stunden verbrachte er dann schlafen neben Rob im Bett, anschließend bekam er was zu trinken und war quitschvergnügt. Jetzt heiß es noch ihn bei Laune zu halten, bis er seine 6 Stunden im Liegen verbracht hat. Damit hat Tobin seinen Rekord im Liegen ohne hochgenommen zu werden gebrochen!
Für alle die es interessiert: Tobin muss flach liegen und darf nicht seinen Kopf anheben damit sich in seinem Kopf aufgrund der zusätzlich injizierten Flüssigkeit kein Druck aufbaut, er keine Kopfschmerzen bekommt und sich nicht übergeben muss.

Erste Stammzellinjektion, Stem Cell Infusion #1

Am 05.11.2007 um 15:00 Uhr bekam Tobin in Xiaoshan District, Hangzhou, China im Krankenhaus seine erste Injektion Stammzellen über die Vene. Die ganze Prozedur verlief mehr oder weniger ohne Zwischenfälle. Nach einer langen Mittagspause kamen 2 Krankenschwestern und legten Tobin seinen Zugang. Dies hat leider zu lange gedauert und Tobin hat von seinen Stimmbändern ordentlich gebrauch gemacht. Ob es an den langsamen Schwestern oder am zappeligen Tobin lag? Wohl an beiden. Anschließend sind wir in den „Infusionsraum“ umgezogen. Dort saß schon der 1 1/2 Jahr alte Christopher mit seiner Mutter und schaute Video auf einem kleinen DVD Spieler. Auch er hat beim Zuganglegen ordentlich gebrüllt. Ich bin mir ziemlich sicher, dass die kleinen Jungs nicht nur weinen, weil das Stechen weh tut, sondern es gefällt ihnen einfach nicht festgehalten zu werden. Verständlich!
Über die Infusion bekam er Kochsalzlösung, Stammzelle eingelegt in Plasma und Nervenwachstumfaktor (NGF), und ein Antiallergikum falls es doch zu einer Immunreaktion kommen sollte. Nach ca. 20 min war der Spuk dann vorbei! Die möglichen Nebenwirkungen wie Kopfschmerzen, Erbrechen, Fieber sind bei Tobin zum Glück nicht auf getreten, er war wohn ein bisschen blass aber ansonsten OK. Den nächsten Tag über war er glücklich und vergnügt. Seine zweite Injektion wird er am Freitag, den 10. November bekommen, und zwar diesmal als Rückenmarkinjektion. Wollen wir hoffen dass auch diese Prozedur reibungslos abläuft: 6 Stunden vorher keine Nahrungsaufnahme, Vollnarkose für ca. 3 min, Liegen für weitere 6 Stunden, erste Flüssigkeit Aufnahme nach 2 Stunden. Wenn wir das Heil hinter uns gebracht haben darf ein freies Wochenende kommen!!!!!!
Trotz der ganzen Umstände müssen wir sagen, dass es uns gut geht. Unsere Wäsche wird gewaschen, wenn wir wollen bekommen wir mittags und abends essen geliefert, unser Zimmer wird jeden Tag geputzt, eine der Putzfrauen bringt uns immer ein leckeres chinesisches Frühstück mit, wir halten eine gepflegte Mittagspause, Rob´s Akupunkturarzt und Tobin´s Physiotherapeut (eine ganz süße, kleine Chinesin) kommen aufs Zimmer und wir haben einfach gerade keine großen Verpflichtungen. Uns gefällt das!!

On the 5th of November at 3PM Tobin received his first stem cell infusion in the hospital in Xiaoshan district, Hangzhou, China. The whole procedure went by without incident. After a long nap, two nurses appeared and applied the IV. This took a little bit too long and Tobin was able to exercise his singing voice. Was it the fault of the slow nurses or the wiggly Tobin? Probably both. We then moved to the infusion room where 18 month old Christopher and his mom and dad were watching a video on their mini DVD player while Christopher received his last of five injections on this his second trip to China. He also screamed pretty loud when they applied the IV. I’m pretty sure that these two boys don’t cry because it hurts to get stuck with the needle, they just don’t like it when someone holds them still. Very understandable! The infusion contains at first sodium chloride solution, then an antiallergy medicine in case an allergy arises from the plasma, nerve growth factor, and the stem cells in plasma. After about twenty minutes it was over! The possible side effects, headaches, fever, nausea, did not occur in Tobin’s case. He was a little pale but otherwise o.k.. The next day he was in a good mood. His second treatment will be on Friday the 10th, but this time the cells will be injected into his spinal fluid. We’re hoping that this will also go over smoothly even though it involves: 6 hours before no food, general anesthesia for as long as it takes to do the injection, he has to lie flat for six hours after, and no liquids until 2 hours after. After this we will have earned our free weekend!

Besides these challenges we are pretty happy here. We have someone washing our clothes, when we want our lunch and dinner are delivered to our room, our room is cleaned everyday, the cleaning lady brought us delicious steamed meat buns for breakfast (good for Rob!), we take naps everyday, Rob is getting accupuncture for his various climbing related ailments and Tobin gets physical therapy from his cute little therapist everyday direct in our room, and we just don’t have that much to do. We like it!!

Happy Birthday Tobin!!

Today we celebrated Tobin's birthday with a Chinese cake and a GermanAmerican Chinese soup. A couple of the other kiddies around here came in and sang him a birthday song, and he received a bunch of nice presents from his aunty and Omi. Tobin says thanks and thanks for all the nice wishes we have received on the blog and per email. Check Flickr for more bday photos.

We are very excited about starting the treatment tomorrow. Tomorrow he receives the cells through an IV, which is supposedly easier than through the spine, which we will start on Friday. We are still having a hard time believing that we are here and that something like stem cell therapy even exists. From everything we heard and read before we came, this therapy always sounded like something that would be possible in the distant future. Tomorrow we leap into that future and we will see what comes out on the other side. Of course we are a bit nervous. We just hope that Tobin makes it through the treatment without panicking too much. We will try our best to keep him calm.

First Day! (Translation of Maiken's post)

The sun is shining into the room and we are still sleeping even though it is time for Tobin's first appointment: blood test. Rob takes off with Tobin and in a short time Tobin's screaming can be heard throughout the entire twentieth floor. As a worried mother I rush into the room and find four excited nurses, a sweaty father, and a fighting baby against the hands that are trying to hold him. In the end, all head off to the children's ward for more expert hands. All the hospital employee's are very sweet to Tobin. From afar the nurses start calling "Bebiii! Bebiii!" and he is then cuddled and kissed (like everywhere in the world). On the street he draws the attention of young and old alike, Bike riders stop and turn around to come have a look and Tobin laughs and kicks at each one. I think I like this land and its people!

And now back to the important info. Our day goes on with questions from doctor "Mary" and we had another examination with the physical therapist scheduled but I had it postponed until tomorrow. Generally we are happy with our situation, but the amount of information we received before our arrival leaves something to be desired. We would like to provide now some information for others who may be coming to Hangzhou for stem cell therapy: Beike Switzerland, our European contact with the hospital, either withheld information, answered us falsely, or completely left things out. They didn't tell us certain things about our stay and our possibilities in the hospital, like if you pay more money you can have a bigger, "VIP" room, that all bed sheets are included and washed twice a week, and that twice a day the "translators" come and can order food for you, including McDonalds and KFC, which you then have to pay for upon delivery. And concerning the treatment, Doctor Mary let us know that after the first two infusions, Tobin will be evaluated to see how many further shot he should receive, and we are not set at a fixed four shots.

On our floor, which is only for foriegners recieving stem cell treatment, there are three other babies. We are already in contact with one mother who is here with her husband and their one and a half month old baby Christopher. This is their second time here and they are satisfied with the results. Their son also has cerebral palsy and has shown improvements like open hands and relaxed muscles. This time it seems he is making progress with his speech development. There are also many adult patients from all over the world: India, Canada, England, Scotland, Italy, Hungary, Romania, American, and Tobin who is the first patient from Germany in this hospital. The atmosphere here is very warm and familial, and you wouldn't notice it was a hospital at all if it wasn't for the ton of nurses running around.

Now something about our host city: here are the GPS coordinates for all you Google Earth nerds: 11'10.89"N 120°16'29.06"E. The hospital is not, as we hoped, close to the Marco Polo admired West Lake, but in a huge part of town where blinking advertisements, skyscrapers, and housing projects dominate. Luckily taxis are dirt cheap!

Our next important appointment is the first stem cell infusion at 2:30pm on Monday! Cross your fingers for us!

Der 1. Tag

Die Sonne scheint in unser Zimmer und wir verschlafen trotzdem fast Tobins ersten Termien: Blutabnahme. Rob zieht mit Tobin los und schon kurze Zeit später erschallt sein Schreien über den ganzen Flur. Als besorgte Mutter laufe ich los und finde 4 aufgeregte Krankenschwester (n) mit einem schwitzenden Vater und Tobin im Kampf gegen die festhaltenden Hände. Am Ende sind alle zur Kinderstation weiter gezogen, um dort passendere Hilfe zu bekommen. Das Krankenhauspersonal ist total süss zu Tobin, schon von weitem rufen die kleinen Chinesienschwestern „Baby, Baby“, er wird geknuddelt und abgeküsst (wie überall auf der Welt). Auf der Straße zieht er die Aufmerksamkeit von Jung und Alt auf sich, Radfahrer kehren um ihn anzusehen und Tobin lacht und strampelt dabei jeden an. Doch, ich glaube ich mag dieses Land mit seinen Leuten!

Nun aber zurück zu den wesendlichen Informationen. Weiter ging es mit Fragen von Ärztin „Mary“ über Tobin und eigentlich hätte noch eine Check-up bei der Physiotherapeutin angestanden, habe dies aber auf morgen verlegt. Generell sind wir mit unserer Situation so weit zu frieden, dennoch lässt der Informationsfluss zu wünschen übrig.
Hier kurz ein paar Anmerkungen für andere Leute die vorhaben nach China für eine Stammzellbehandlung zu kommen: Beike Schweiz, die als Vermittlungspartner für das Krankenhaus auf treten, haben uns Informationen vorenthalten, nicht ausführlich beantworten oder falsch beantwortet. So stimmten Antworten bezogen zu der Zimmerausstattung nicht, auch hat man uns nicht berichtet, dass man die Möglichkeit hat für einen Aufpreis ein größeres Zimmer zubekommen. Auch in Bezug auf die Behandlung sind wir nicht genug Beraten worden, so hat z.B. die Ärztin „Mary“ gesagt, dass mehrere Injektionen und nicht nur 2 folgen sollte, falls die Behandlung schon nach der zweiten Injektion erfolgreich ist.
Auf unserer Station, welche nur für die Stammzellentherapie ist, gibt es noch 3 weitere Babys. Mit einer Mutter sind wir schon in Kontakt. Sie ist mit ihrem Mann und Sohn (1 1/2) zum zweiten Mal hier und zufrieden mit der Behandlung. Ihr Sohn hat auch eine Cerepral Parese und zeigt seit der ersten Behandlung Fortschritte wie öffnen der Hände und entspannter Muskulatur. Dieses mal scheint er Fortschritte in der Sprachentwicklung zu machen. Weiter sind hier Erwachsene Patienten aus aller Welt: Indien, Kanada, Schottland, England, Ungarn, Rumanien, Italin, Amerikaner und Tobin als der erste Deutsche in diesem Krankenhaus! Die Atmosphäre ist sehr herzlich und familiär das man auf den ersten Eindruck gar nicht an eine Krankenhausstation denkt, wären da nicht die Schürzen und Hauben der Schwestern.

Nun noch kurz was zu unserer Aufenthaltsstadt: Hier die Koordinaten für alle google- earth -nerds 30°11'10.89"N 120°16'29.06"E
Das Krankenhaus liegt leider nicht wie gehofft am, von Marco Polo gepriesenen West Lake, sondern in einem anderen, rießigen Stadtteil wo Hochhäuser, große Straßen Blinkreklame und Wohnsiedlungen dominieren. Zum Glück ist Taxifahren
spott billig!
Unser nächster wichtiger Termin wird am Montag um 14:30 Uhr Tobin´s erste Stammzelleninfusion sein! Drückt uns die Daumen!!!!!

We have landed!

Well, after almost 36 hours on the go we are about to pass out in our hospital room in Hangzhou. What a whacked out journey!! We got off to a hard start when British Airways couldn't find our reservation for Tobin! They had already checked in our mass of luggage and were talking about taking it off the plane with about ten minutes before take-off. The Lady took a credit card number and then gave us a boarding pass, but we were scared about arriving in London without a ticket for Tobin to go on to Shanghai. imagine having prepared two months for a trip and then being told maybe you had to leave a day later as planned. What a nightmare! We got to Heathrow and proceeded directly to terminal 4 which is on a normal day a pain. Heathrow has got to be the worst airport in the world. You have to take a chiggity bus from terminal to terminal, and they drive on the wrong side of the road! At each terminal you have to go through security, which has massive lines. Once we arrived at terminal four we learned at the BA desk that we had to go to terminal three to talk to American Airlines to try and get a paper ticket for Tobin. AA told us we had no ticket for Tobin and I had to buy a new one and then get back to terminal one to catch the flight all in less than 90 minutes. I got my exercise for the day. The flight to Shanghai was hard because Tobin did not really sleep until two hours before we landed. After arriving in Shanghai everything went smooth. All three of us slept on the two hour bus ride to Hangzhou. The only thing I have to say about China is that everything is very, very big. There are massive buildings and construction sites everywhere and the buildings are all funked out. The area around West Lake in Hangzhou is super nice, but the area where the hospital is looks like Fashion Island, Redwood City, etc. The room is nice. We have our own fridge and water cooler and so far everyone is chill. Now it is time for bed. Finally. See ya tomorrow.

Deutsche Version (Danke Lutzy!):

So, nach fast 36 Stunde auf den Beinen sind wir endlich angekommen in unserem Krankenhaus in Hangzhou. Was für eine Reise! Es fing alles damit an, dass British Airways Tobins Ticket nicht finden konnte. Unser Gepäck war schon eingecheckt, und 10 Minuten vor Abflug sollte es nun wieder ausgeladen werden, da kriegten wir in buchstäblich letzter Minute ein neues Ticket und wir konnten einsteigen – mit unserem Gepäck. Offen blieb aber die Frage, ob wir nun wirklich ein Ticket in Heathrow bekommen würden. Stellt euch vor: 2 Monate Vorbereitung, und dann plötzlich alles um einen Tag verschoben! Was für ein Albtraum! In Heathrow gingen wir direkt zu Terminal 4 – was an einem normalen Tag schon eine Katastrophe ist! Heathrow ist sicherlich der schlimmste Flughafen der Welt! Man muss mit so einem Bus von Terminal zu Terminal, und dann fahren die auch noch auf der falschen Seite! Am Schalter von BA wurden wir zum Schalter von American Airlines geschickt um das Ticket für Tobin zu bekommen. Dort angekommen hieß es dann, dass es kein Ticket für Tobin gäbe und wir ein neues kaufen müssten, dann zurück zu Terminal 1 um den Flieger in weniger als 90 Minuten zu kriegen…. an sportlicher Betätigung mangelte es mir nicht mehr! Der Flug nach Shanghai war anstrengend, da Tobin nur die letzten 2 Stunden schlief. Nach unserer Landung lief dann aber alles glatt. Während der Busfahrt nach Hangzhou schliefen wir alle drei ein. Über China kann ich nur sagen: Alles ist riesig, riesig groß! Überall riesige Gebäude und Baustellen, durchgeknallte Architektur. Die Umgebung von West Lake bei Hangzhou ist total schön, aber das Viertel des Krankenhauses eher spießig, wohlhabend. Das Zimmer ist schön, mit Kühlschrank und Wasserspender, soweit also alles OK. Jetzt ab ins Bett, endlich! Bis morgen!