Nico had his 6month followup visit on March 17 and 18 in Chicago. We traveled with Southwest Airline on Monday, March 16, and arrived in the evening in Chicago. We took the Go Airport Express to the Aloft on N Clark Street. Thanks to my son-in-law our stay at the Aloft was free (thank you Chance!). We had a nice room on the 18th floor, fully handicap accessible with roll-in shower, grab bars and build in shower seat. We had a nice view over the city toward Lake Michigan and were about 2 blocks away from the Trump Tower.
We love the atmosphere of the hotel and also the attached restaurant (Beatrix). The restaurant is not too easy to maneuver on a scooter or wheelchair, but it is doable. Nico was able to walk this time so we had no problem at all. Needless to say, we love the food and had all our meals there. They also provide room service for a $4 surcharge.
We got lucky with the weather in Chicago. When we arrived on Monday the thermometer showed 70°F and everybody walked around in t-shirt and sandals. The temperature dropped to less than 37°F during the night and stayed at 45°F for the next couple of days. But we had sunshine all the time, so no complains!
On Tuesday, March 17 Nico was scheduled to have a MRI at Arkes Family Pavilion on N St. Clair Street. This is a short 15min walk away from our hotel. I walked, Nico drove his scooter. As always, everything was very well organized and we did not have to wait for long. The MRI took almost 2 hours and I spend the time watching murder mysteries in German on my iPad. Time flew by and we made our way back to the hotel. By now the temperature was dropping and the wind picked up speed. We decided to take it easy and after a little relaxation time in our room we went downstairs to Beatrix for dinner.
Visiting the Doctors
On Wednesday, March18, Nico had an appointment with Dr. Balabanov at Rush University Medical Center and right afterward an appointment with Dr. Burt at Galter Pavilion. This time we took a cab to get around.
Dr. Balabanov seemed first very short and stern and told Nico to only answer his questions because he did not want to get biased in his assessment of Nico's current condition. But this did not last for long, he got more and more excited and had a big smile on his face. He was obviously very pleased with Nico's progress so far and encouraged Nico to keep up with his exercises. He believes that Nico's walking will further improve and it might even be possible that he can ditch the forearm crutch and use only a cane.
The visit with Dr. Burt went very well too. Dr. Burt is never a man of many words, but judging by the smile on his face, his evaluation of Nico's condition was also very positive. The MRI results came never up and we are still waiting to get our hands on the report. But I think if there would have been any concerns either Dr. Burt or Dr. Balabanov would have commented on it.
Dr. Burt's nurse took Nico for the obligatorily 9 Hole Peg, math and walking tests. I don't really know how they turned out. Nico was exhausted and started to shut down. We walked/scootered back to the hotel and took it easy for the rest of the day.
On Thursday, March 19 the Go Airport Express shuttle picked us up at noon and took us to the airport. Our flight was full, but thanks to Nico's scooter, we are always the first ones on the plane and get good seats. We were both happy to be back in warm and sunny San Diego!
Looking Back
Last year, in March of 2014, Nico was in the middle of a really bad relapse after stopping Tysabri and switching to Tecfedera.
He was no longer able to live on his own and had to move in with me and my husband. He could hardly walk, kept falling a lot, needed help to feed himself. Tying his shoes, closing buttons or lifting up a glass of water was almost impossible.
But more importantly, his outlook on life was very poor. He did not want to live anymore and he was very depressed.
I felt very helpless. He had tried all the drugs offered for MS, nothing really stopped his decline and now he seemed to be going down faster than ever before.
HSCT
I always knew about the clinical trials using high doses of chemo therapy and autologous HSCT to stop progression in MS. I read about this way back in 2002 when we first found out that Nico has MS. It made me very hopeful but at the same time it seemed as something unattainable.
The mortality rate was very high and the patients treated were in much worse condition as my son was at that time.
But now, 12 years later, he was in that condition. I realized that I had to go back and see what has happened during those 12 years and where that treatment was now.
It did not take me long to stumble upon Georg Goss's blog and read about his journey to get that treatment and about his success to stop his progression.
He went to Germany, really? He had this done in Heidelberg? We are German, we even lived in Heidelberg before we moved to America. Nico was born in Heidelberg! How did I not know about this earlier? At least, now I knew what to do! I would get Nico into that treatment and if it was the last thing I would ever do!
Today
Fast forward to March 2015, where are we now? After being successfully treated by Dr. Burt in Chicago, Nico is living again. He just moved back home to his beloved Truckee, in northern California, close to Lake Tahoe. He is a happy person and enjoys life because he has a future now. Is it always easy? No, absolutely not. He has still a long way to go on his road to recovery. He may never run again or skateboard or snowboard. He found other things to fill out his days. The following pictures will show what I mean better than I can explain.
Going to KOH
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| Going to the King of the Hammers, to support his racing team. |
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| One happy camper! |
First time back in Truckee
Day at the Beach
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| At the beach and not melting in the sun! |
Addendum
At last, we got the report of Nico's MRI:
No new lesions have developed since the most recent MRI, which is dated July 1, 2014, and there are no enhancing lesions on the current study to suggest active demyelination. Also, some of the existing lesions have decreased in size.
Thanks for reading my blog!
