Stem Cell Harvest Day

The big day came finally yesterday. This was the main purpose of our 3 weeks stay here in Chicago. The days leading up to collection day were very uneventful. Due to the fact that Nico had to inject himself daily with Neupogen,  he did not have very much energy for any sightseeing or other activities. He slept for most of the days. This is not uncommon, his body went into overdrive to produce lots of stem cells. It has kind of the same effect like your body fighting an infection. Some people develop a fever and feel generally very achy. In Nico's case, it led to tiredness and general weakness. Just going to the bathroom was a major undertaking.

We reserved the hotel shuttle to drive us to the hospital. There was no point in taking the scooter along. We opted to use the hospital wheelchair to get around that day. As we came down to the hotel lobby, we saw a familiar face. The young man also waiting for the shuttle made the same trip with us 10 days ago, when we were headed for admission on chemo day. 

As it turns out, he also has MS and is on the same treatment schedule as Nico. So we will see him again later in September and Nico has a new buddy. 

He enlightened me, that the TV in our suite has more than only the pay channels. Duh...I spend almost 2 weeks without watching TV! Why did I not ask someone earlier how to operate the darn thing?

Our first stop this morning was the Rube Walker Blood Center on the 11th floor of Galter Pavilion. The boys got their blood drawn to get an estimate on their stem cell production. 
While we were waiting for the results, we walked over to the Feinberg Building, to Interventional  Radiology on the 4th floor, for temporary catheter placement. 
I pushed Nico in his over sized wheelchair, which was really awkward. The doors are not wide enough and the elevators are not big enough for those monsters, it was mostly a bumpy ride. 

The catheter placement went without a hitch. It was done with local anesthesia and he could choose his favorite kind of music to listen to during procedure. He chose reggae music and was happy to hear something from Bob Marley.

Here is Nico, waiting for his turn.

All done!

The whole procedure took less then 30 minutes and was not as awful as it looks like. We made our way back to the 11th floor of Galter Pavilion. We did not have to wait long and Nico got hooked up to the Apheresis machine. Here is a description of the process. Our nurse, Kryztyna, was a very nice and sweet person. It really is amazing how well and efficient every step of the process is organized.

Nico, hooked up.

The collection started at 10:30 am and was finished by 3:00 pm. Nico slept through a big portion of the collection time. Around noon, Dr. Burt's nurse Amy stopped by to check on Nico. She was impressed how well Nico took the treatment so far.
After collection was done, a sample of the stem cell harvest was sent to the lab for counting. We were told it takes about 1.5 to 2 hours to get the result. In the meantime the catheter stays in place, but we were free to go or hang out. 
Nico was hungry and we went to the food-court on the 2nd floor of the Feinberg building. There is a bakery store right at the corner where the Walgreen's Pharmacy is. They have incredibly delicious looking danish pastries. They also offer an assortment  of hot soups. Nico had a bowl of Chicken Dumpling soup, and a cherry filled danish as dessert.

Nico has trouble to keep his eyes open.

Since Nico felt so tired we thought it best to go back to the blood center were he could lay on the easy-chair and take another nap. 
Around 5:00 pm, Kryztyna informed us that she got the result - 7.25 million cells. Only about 2 million are required for the transplant. Yeah! We are good to go.

The only thing left to do was to remove the catheter. Kryztyna explained every step of the process to Nico. He had to put on a face mask and was covert with a sterile paper cloth. 

The nurse disinfected the area and removed 2 sutures that held the catheter in place. She told Nico to take a deep breath and hold it and there was the catheter in the corner on the floor. 

3-lumen VASCATH

She applied pressure to the area to stop any bleeding and closed everything with a tidy compression dressing. This has to stay in place for 24 hours. We had to wait 15 minutes, to make sure there is no bleeding.


We took a taxi to the hotel and Nico barely made it into bed. He was very weak and I had to help him to get around. 
We have one more day to relax and hopefully recover before we fly back to San Diego.

This concludes part one of my blog. I probably will not add anything until September 10, when we come back for the chemo and transplant part of the treatment.

Waiting For Godot....

or in our case - waiting for stem cells to grow (and it will not be in vain!).

We have not been very active the last days since my previous blog. Nico had ups and downs. One day he was feeling energetic, and he did go to the gym to get some exercise.

Next day he was very tired and had to rest. 

On Saturday he started his course of Antibiotics and Antifungals  and also daily Neupogen shots. Antibiotics and Antifungals are to protect him from infections in the coming week. We were told that his immune defense will be somewhat compromised beginning Monday (7 days after mobilization chemo) and to stay away from crowds, don't eat from buffets and carefully wash fruits and vegetables. He will be neutropenic for approximately 3 days.

The purpose of Neupogen is to stimulate his stem cells to grow and to find their way from the bone marrow to his peripheral blood for a successful harvest. This will take 6 days of  2 injections every morning at 7am. He is scheduled for Thursday, August 14 to get his stem cells collected.

Side effects of Neupogen may include: flu-like symptoms and bone pain. He could also develop a fever. He has to check his temperature twice a day. So far, (knock on wood!) he had neither one. But he is sleeping a lot. I take that as a good sign - his body is producing lots of stem cells!

Looking Down From High Above

Nico was feeling good yesterday. He did his stretching exercises and went to the hotel gym to try out the recumbent exercise bike.
He felt still good after all the exercising and was ready for an adventure. We decided to go to the John Hancock Center right around the corner from the hotel.

Tickets were sold on the lower level of the building, so we had to take the elevator down (Nico was using the scooter). We had to wait in line for a while to get our tickets and then it was off to stand in another line to wait for the elevator, which would take us to the observation deck on the 94th floor. We were channeled through a maze of ropes to be greeted by a very persuasive photographer. There was no escape and we ended up having our picture taken.

There is also a day version:

We finally made it to the elevator and up we went. Wow, it was fast! It took us less time to get from the lower level to the 94th floor than it takes us to get from ground level to 16th floor at the hotel. I had to pop my ears twice to equalize pressure.
The views from up high are impressive! It is not easy to get some decent pictures through the glass, but I did my best:

Taken with my GoPro

Nico had fun

Navy Pier

View towards the east

Nico had also to try the newest attraction - Tilt!

He was not too impressed. He said it is not much different from looking straight down from the other windows. I guess we will still have to go to the Willis Tower and stand in one of those outside plexiglass boxes.

The World On A Scooter

One of Nico's most prominent MS symptoms is the loss of his balance. This was also the first symptom that made it really obvious that something is wrong with him. He walked like a drunk although he never drinks any alcohol.

Nico was always very adamant about not using a mobility aid. This made his life a lot harder than it needed to be. But it is also very understandable, that someone who used a skateboard to get around and spend his winters snow boarding, was having a hard time to adjust to the new realities of life with a progressive disease.

                                               This is Nico at the age of 15 or 16


His first mobility aid was a cane. The cane was the only aid he would use for about 9 years. Was it enough to get him around? Absolutely not. He fell a lot ! Surprisingly he never had any serious injuries.

As his disease progressed his capability to walk diminished more and more. Around Christmas of 2013 he finally agreed to use a Rollator when going outside the house. He had another relapse in February/March of 2014 and had to move in with us. We started to look at mobility scooters. He hated all of them, and told me he would rather sit on the couch for the rest of his life than using one of those.

I can be stubborn too, I kept searching  on the internet and found this scooter made by Travelscoot. Developed by a German!

 

The main advantage of this scooter is, that it is light weight, and can be folded to take it almost everywhere. It fits in the trunk of any car. But the biggest bonus - Nico likes it !

After we came home from the hospital on Tuesday and Nico fell asleep, I realized, that we had no food or water and I needed to go shopping. 

Back at home that would be easily done - hop in the car, drive to the next supermarket - shopping is done!

Being in a big city like Chicago puts a completely different spin on something simple as shopping for groceries. We don't have a car, the closest grocery store is 15 minutes away. 

This was not a problem when Nico was with me, we just loaded everything onto the scooter. Today I will have to carry everything. 

The thought of lugging 2 one gal bottles of water in addition to everything else, was not very appealing.

Without a second thought, I swung myself onto the scooter and off  to Trader Joe's I went. 

It all sounds pretty simple, but it takes some getting used to this type of transportation! First thing I learned - being a former motorcycle rider - reffing the gas throttle does nothing on a scooter! It does not go faster, it just makes it think for a while before it moves.

Driving on the sidewalk on a busy downtown avenue can be compared to driving on the freeway at rush hour in San Diego. People are everywhere, mostly ignoring the fact, that you are driving amongst them. You are always "swimming against the stream" no matter which direction you are headed.

I made it in one piece to Trader Joe's, and was faced with the fact, that stores are not really designed for people with mobility issues. Darn, and Trader Joe's was out of 1gal jugs of water!

On my way home I was waiting on an intersection of Michigan Avenue, when I spotted a lady on the exact same scooter I was using. We instantaneously locked eyes over 4 lanes of traffic and never ending streams of people. What are the odds to run into someone using this rather uncommon scooter?

She moved to the side and waited for me to cross the street. We greeted each other like long lost friends and started catching up on good old times. As it turned out, she was also a victim of multiple sclerosis. She used to be a physical therapist and also a researcher. 

I told her that I borrowed the scooter from my son to do our grocery shopping. I also told her about the purpose of our stay in Chicago. She knew all about HSCT, but did not think that it was something for her to try. She considered herself being too old and she is already since many years in the secondary progressive stage of the disease. She keeps her self fit working out every day and she enjoys traveling the world with her scooter. 

We wished each other good luck and headed off into different directions.

I made it back to the hotel in one piece. Overall, it was an enjoyable way to shop for groceries!

Mobilization Chemo

On Monday morning Nico was admitted to the 16th floor of the Prentice Pavilion of Northwestern Memorial Hospital. The day started out with more blood draws and a general health check up. A IV line was placed into a vein on his right wrist. We had to wait for lab results.

Around 2pm the nurse started the infusions: Mesna to protect his bladder from damage, Zofran to prevent nausea, Lasix to make sure he pees a lot (to flush out his bladder) and Cyclophosphamide (or Cytoxan, Chemo drug) plus saline for hydration. 

Shortly after he started to pee already and from there on he had to go almost every 15 minutes. He was getting more and more exhausted. But eventually the Lasix was wearing off for a while. He developed signs of what is known as Wasabi nose ( unpleasant tingling in the nose). It resolved instantly after the nurse slowed down the speed of the infusion. As the afternoon progressed, he became weaker and weaker, but he always said he is feeling alright. The nausea medication worked its magic and he never had to throw up.

What a champ!

Around 6pm the Cyclophasphamide infusion was over, yeah! He had to continue with saline hydration. Mesna and Lasix were added every 8h until next morning. 

I became somewhat worried, he looked very frail and his hands and legs stopped working. I suggested to order dinner at that time. Although, he claimed that he has no appetite, he agreed to a Cheeseburger, mashed potatoes, green beans and a fruit cup (for me). 

By the time his food arrived, he started to perk up again. He ate all the food on the tray, including my fruit cup. So much for no appetite...

He became more alert after he had some food. He skyped with his sister and watched TV. By 10pm I made my way back to the hotel. I was exhausted.

As I came back in the morning he looked still pale. He reassured me that he feels great and he had already had his breakfast. He told me, he got at least 3h of undisturbed sleep during the night.

By 8:30am Dr. Burt and his staff came by for a short visit. We had to wait for his last IV drip to finish and then he was to be discharged. He ordered mashed potatoes ( best ever!) and gravy for lunch and send me to the cafeteria for a chocolate bar. 

By 12:30 his IV had finished. The discharge nurse gave us instructions for the days ahead and we could leave as soon as we were ready. I was kind of skeptical if Nico was able to ride his scooter. As it turned out, he could do it without a problem.

We called for a Taxi and were at the hotel 5 minutes later. Now he is sleeping since a couple of hours....

Leaving The Aloft...

The title of this post sounds like a bad movie. Our very enjoyable stay at the Aloft ended on Sunday. 
We had planed a couple more outings before Nico's admission for chemo therapy, but all the excitement of the week finally caught up with Nico. He was very tired and preferred his comfy bed over a trip to 103rd floor of the Willis Tower. We had nice dinners at Beatrix:

This was one of Nico's favorites: Pork Shank

We checked out on Sunday and moved across town to the Residence Inn on E. Walton Place.