Thursday, July 31, 2014

Millennium Park

We started our day with our favorite breakfast, Pot Roast and Egg Sandwich....







Our plan for today: visit Millennium Park. Nico wanted to see Cloud Gate, or how he calls it - the upside down coffee bean. We walked down N Clark St to Randolph St, at least that was the plan. But then I listen to Siri and we started to walk in circles. But we eventually got there :).





























Testing Is Done !

Wednesday morning started early with an 8 o'clock appointment at Galter Pavilion. We walked this time (I walked, Nico rode his scooter).

He had a 2d-echo of his heart. We had to wait for a while until it was his turn. We almost were late for his next appointment, a pulmonary function test. After that we headed back to the hotel for a late breakfast and to take a break until our next appointment at 4:30 with Dr. Burt.

As soon as we arrived at our room, Nico received a call from Kim Y. (Dr. Burt's nurse) to come earlier at 2pm. That gave us just a little over 1h until we had to go back to the hospital. Enough time for me to strap the GoPro on Nico's scooter. We filmed on the way, mostly me walking in front of Nico. I will have to work on the footage a bit before I can add it to the blog.

Our meeting with Dr. Burt was very short. He was surprised to see us back so soon. Although Nico's test results from the pulmonary function test weren't in yet, he gave Nico the all clear to start mobilization on Monday, August 4. Did we have any questions for him? We both could not think of anything and off he went....

We spend some time with Kim, going over proceedings for the next 2 weeks. She also collected all study questionnaires Nico had to fill out even he is being treated off study. Forms had to be signed and then she took Nico for some more tests and sent me to the waiting room. Nico was subjected to the 9-Hole Peg test and the PASAT (basically oral math) test. He came back and said I'm feeling pretty stupid right now. I always thought I'm fairly good at math. My left hand is also very bad with picking up and putting small things in little holes. We got a good laugh out of that.

On our way back to the hotel we stopped at Trader Joe's again to pickup some more food supplies.

We are done with all the testing now and can make some plans what to do with our free time for the rest of the week.

Walking down W Erie St.

Monster McDonald's (across Hard Rock Cafe)
Mexican Restaurant (W Ontario St, across from Trader Joes)

Hard Rock Cafe (N Clark St and W Ontario St)


Irish Pub (across the Aloft)







Tuesday, July 29, 2014

We Are In Chicago...

We arrived on Sunday with Southwest Airlines. I love flying Southwest. We had excellent seats although the plane was fully booked.

Getting through Security was a different story. It makes my blood pressure rise every time. People in wheelchairs and on scooters are being directed to a line outside the normal security check line and have to wait until a security officer finds the time to come and get them (which can be never!). At the same time, all arriving people are going through this line too and everybody is pushed to the wall. To make things even more interesting, I had to leave Nico there and go through the normal check-in. After that I could not tell if he is still out there or has someone brought him in. Not a very pleasant experience.

Southwest made up for the struggle by letting us be the first people on the plane and we got to pick the best seats with lots of legroom. Nico could ride his Travelscoot to the the plane. The scooter was taken down to the luggage storage and re-appeared after we landed.

We took the GOshuttle from Midway Airport ($38) to the Aloft on 515 N Clark St. Our room is great! We are on the 15th floor and have a great view over the city. The beds are a dream, I could sleep all day long. There is also a restaurant connected to the hotel ( Beatrix ). We get free breakfast there (thanks again Jana and Chance!) and had also lunch and room service from them. As you can guess, we love the place already. The Warm Pot Roast Sandwich is to die for. I'm glad we are only staying here for 7 days...

Monday morning Nico had his first appointment at the Arkes Family Pavilion on St.Claire St. We had breakfast at the Beatrix and took a taxi to get to the appointment. He gave 20 vials of blood, had an EKG, a chest x-ray and had to pee in a cup. Everything was so well organized, we hardly waited longer than 5 minutes and were done in no time. We also walked over to the Feinberg Pavilion to pick up his meds for next week (Ciprofloxacin, Fluconazole, Ondansetron and Neupogen) at the inhouse Walgreens. His co-payment was $198.

We took the taxi back to the hotel, had lunch at Beatrix and took a long nap afterward. Later we walked to Trader Joe's on East Ontario St. and picked up some edibles for our dinner.

Today was a very easy day. After breakfast we walked to Galter Pavillion on E. Huron St.  for his vein check appointment. It sounds very ominous, but what it boils down to is getting your BP and temperature checked and answering some general health questions. The nurse informed us about the details of the catheter placement and the stem cell collection procedure. We got to see the Apheresis machine in action. It was not any of Dr. Burt's patients, she had to collect 20 million cells, HSCT patients need only 2 millions.

Tomorrow will be a more busy day.....


View from hotel room

Breakfast

Down town Chicago

Friday, July 25, 2014

Before We Leave...


Nico reached an important milestone this week. He took his last DMD (Disease Modifying Drug) last Tuesday evening. Almost 12years of self injections, monthly infusions and daily pills to keep MS from progressing, are finally over. He still has to take a lot of pills several times a day to manage his multitude of symptoms, but hopefully that will get better soon too.

He is doing really well at the moment and is all pumped up and ready to do this. We are flying to Chicago this Sunday and staying at the Aloft the first 7 days (thank you Jana and Chance for your generous gift of hotel points!). After that we are staying at the Residence Inn and are coming back around August 17.

Nico will have extensive tests in the first week of our stay, to make sure his body can take the treatment. If everything goes well, he will be admitted to the hospital for 24 hours on August the 4th for what is called the Mobilization Phase of the treatment. This involves 1 round of Cytoxan infusion (Chemo therapy drug) and 6 days of daily Neupogen injections. This will stimulate his bone marrow to produce lots of stem cells. In addition, he has to take antibiotic and antifungal pills to prevent any infections.

On August 14th a vascular catheter will be placed into a vein in his neck and the stem cells will be harvested by a process called Apheresis. Those cells will be deep frozen and stored for the 2nd part of his treatment later in September. If he produced enough stem cells, the catheter is removed, otherwise it stays until the next day for a 2nd harvest.
We will have a 3 weeks long break and can fly back home.


Here is Nico taking a ride with his nephew Patrick on his snazzy little scooter. This scooter is a lifesaver, it is very light, folds up and fits in the trunk of any car.