4 Month Update Part 2

Two month have passed since our last blog and we had a very busy time with all the holidays and birthdays going on in December and January in our family. Best part of all - Nico was actively participating in all the activities. 

That was something really new! Too many people in one place were always too overwhelming for him and therefore he mostly avoided to be part of  family events. If he was willing to come along he would usually pass out on the couch shortly after arrival and sleep until it was time to go home. Not so this time! He was awake and had fun with his nephews and nieces. 

There have been other changes as well. He used to choke a lot when he was eating or just drinking something. This rarely happens now. He also put on some weight and it is mostly muscle mass. It was very scary to see him getting sick with a cold. 

I had read reports from other people getting sick after HSCT and that their pre-HSCT MS symptoms would come back with a vengeance. But still it freaked me out. Amazingly he bounced right back to where he was before his cold and he got over it rather quickly. Me on the other hand, getting sick a week later, I was in bed for a whole week and needed another week to be able to function normal again.

He also has some down days. Sometimes his legs just don't cooperate and he has a hard time getting around. He clearly is on this roller coaster ride that seems to be a normal occurrence for many HSCT patients in the first year after the procedure.  

On Thanksgiving we had a very special guest at our house - George Goss came by with his lovely wife and 2 boys. For all my readers who are not part of the Facebook HSCT group - George is one of the few early HSCT patients. He had his treatment 5 years ago in Heidelberg, Germany. George had applied for Dr. Burt's clinical trial in Chicago, but was rejected for being SPMS (secondary progressive). Being a physicist and enjoying researching this did not stop him from finding a doctor who would perform the procedure for him. He found him in Germany. He was the first patient treated with HSCT for MS at the University Clinic in Heidelberg. He wrote a blog about his journey and he also founded a Facebook group:Hematopoietic Stem Cell Transplant - MS & Autoimmune Diseases. He is our HSCT guru and knows everything that has been published on the subject. He has and still does spend countless hours on FB to spread the word and help others. Finding his blog and signing up for his FB group was an eye opener for me. I will be forever grateful to George and other people in his group and sister groups for all the help and support that Nico and I received in our quest to find help and new hope for Nico.

Here is George's FB post after his visit:

Sorry I'm late for this post. Last month during the US Thanksgiving holiday I was visiting my extended family in San Diego and my wife and I had an opportunity to meet with Gerlinde and Nico Pecht that live not far away for a short, but enjoyable time (as is always the case for HSCT recipient club members to meet up). Nico underwent HSCT for his own MS in Chicago in 2014 and it appears clear to me that undergoing transplantation has been successful in arresting his underlying disease activity & progression (and the likely improvements that are ultimately materializing); something Nico richly deserves with his excellent attitude. But this also affords me the opportunity to mention something especially important here. . . . I am so happy to see people become their own best health advocate and not just leave it to someone that does not have a vested interest (such as many neurologists). Interesting coincidence is that Gerlinde is a scientist in her own right, being a molecular biologist as is my own wife. So she really provided wonderful research on the entire medical treatment topic of HSCT and STRONGLY supported Nico throughout his successful journey to utilize HSCT to beat autoimmune disease and she deserves HUGE thanks as a supporter and carer which such individuals are also intimately part of our community and deserve our absolute sincere thanks. My hat's off to both of them for taking and doing the steps necessary to make lemonade out of lemons and I am absolutely confident the best is yet to come

Nico replied: 

I can't express how thankful I am for my MOM Gerlinde Pecht, without her I would not even have known such a treatment (HSCT) existed. She also turned me on to this group, where after receiving a personal message from George Goss I knew HSCT was for me. My dream of the possibility to actually beating MS began. After I watched my mom put every waking hour of her life into getting me this treatment, I was in Chicago for evaluation by DR. Burt only weeks later and he agreed to treat me. My dream started becoming a reality. Now I'm just three months post transplant, and after 13 years of Living with MS I feel like I finally won the battle.

I tear up every time I read this....

Some fun stuff:

My husband Greg was off of work the whole month of December. We invited Nico to a trip to Catalina Island (off the coast of Los Angeles) since he has never been there. 
We boarded the ferry in Dana Point and took the hour long drive to Avalon. You probably have heard the saying "It never rains in California..." but of course it had to during the 2 days of our stay. 

Dana Point harbor

On the boot

We stayed at the Canyon Resort and had a big suite with a kitchen and giant bathroom. The hotel is a bit outside of Avalon, but they offer free shuttle service into town. 
On our arrival day we went out for lunch to a Mexican place and did some shopping at the Vons Express for our dinner. 

Lunch at the Mexican Restaurant

We were not able to cook (no pots or pans) but we had a microwave to heat up our frozen entrees. And it started to rain really hard. 
Next morning it was still raining, but we decided to go into town no matter what. It was not raining too hard, just a steady drizzle. After lunch we signed up for a Undersea Tour on a semi submersible boat and bought tickets for the Inland Motor Tour for our last day on the island. 

Waiting for the boat tour

On the way to the boat tour Nico's little scooter decided it had enough of all the water and stopped working. Fortunately the scooter is very lightweight and we were able to just push Nico along. 
Nico became very worried and a little upset about the scooter. We still had a great underwater trip, we were the only people on board! Like a private tour just for us. It is a great adventure, the fish in the marine preserve know the schedule and arrive in throves to be fed by the tour guide. It is impressive! 
We made it back to the hotel, just in time for the couples massage that Greg and I had booked for the afternoon. Nico stayed in the room and tried to get his scooter back to life. 

We had to check out of the hotel by 11:00 am the next morning, but the ferry to the mainland did not leave until 4:30 pm. This gave us plenty of time to take a bus tour to explore the island and maybe get to see some of the wild buffalo still roaming in the back country. 
We dropped off our luggage at the ferry station. The scooter still refused to work. We had charged the battery overnight and let the scooter dry out, but no luck. We kept pushing Nico and the scooter along. It had stopped to rain and the weather was quite nice. 

While Nico was waiting for us to come back from the luggage drop off, he could not resist and tried to get the scooter to start again. And it worked! Now the sun really came out on his face. Not that long ago I could not even mention the word scooter and he would get all angry with me....

We were lucky and saw the buffaloes. This was a really fun little trip.

Happy New Year and best wishes for 2015!

We are already half way through the first month of the new year. Last year around this time I realized how much Nico's disease had worsened and I became really scared.  2014 did not start out to be a good year. But now in retrospect it was one of the best years since Nico was diagnosed with MS. Now I have hope again and I know Nico will have a future.

I would like to take the opportunity and thank my family for all the support and love, especially my better half Greg. Also our extended family here in the US and my sister and brother with their families in Germany. And a  big thank you to everyone who sent money (or donated hotel points) to help pay for Nico's treatment, we are forever grateful.

And thank you for reading my blog.

Nico with his 2 sisters, brothers in law, 2 nephews and 2 nieces, mom and dad. the whole family in one place!