Day +9

The day started early. Nico sent me a text message at 7:00 am that he is already up and running and I should take my time to come over. I had planed to get to the hospital early to be there for Dr. Burt's morning rounds. I wanted to get at least one picture of him and Nico before we leave.

Nico said to Dr. Burt - you are the Miracle Man

Dr.Burt's helpers Allison and Dr.Han

We got the results of his early morning blood draw. White count was 0.1(!).  Yes, 0.1 does not seem much but it is more than <0.1 and means counts are going up. 

Dr. Burt was thinking too that Nico could possibly go home Friday afternoon or Saturday morning. He ordered an additional blood draw for 4:00 pm. That should give us a better idea how things are developing. 

We have a flight booked for Saturday at 1:35 pm. But we have also a reservation for Monday should Saturday not work out. I only hope that I can extent our stay at the Residence Inn for 2 nights. I'm trying not to stress too much about that.

Today was a low action day. Nico decided to asked for a Valium since he felt all jittery. The Valium knocked him out pretty quickly and he fell asleep for a while. He missed his PT session and was pretty much useless for the rest of the day. He felt really loopy and I had to help him to get to the bathroom. 

At lunch time I went down to the 2nd floor cafeteria to buy my lunch: Pesto Tilapia and a side of cauliflower. The food is really tasty and the menu changes every day. They also had cheese Tortellini, Nico's favorite. I took my food upstairs to eat in Nico's room. He had claimed that he was not hungry and felt still full from breakfast. But that changed as soon as I came into the room with my lunch. So I had to go downstairs again and get him the same plus Tortellinis. He ate everything except the fish. He likes to go fishing, but does not like to eat fish.

After he ate he felt less loopy, but he was still sleepy and kept snoozing off. The nurse came at 4:00 pm for the blood draw, Neupogen shots and antibiotics IV. He also gets antiviral and antifungal meds in pill form. Nico always insists to do the Neupogen shots himself but he allows the nurse to press the plunger (I know, he is weird).

Around 7:30 pm the lab result came in - drum roll - white count was 0.4! It is definitely happening, by tomorrow  afternoon they should be high enough for discharge.

Tonight was the season opening episode of Bones and I stayed to watch it with Nico. He lasted about 10 min and then he was out again. He did not wake up after the episode ended. I turned off the light and left to go to the hotel.

Day +8

My day started with a text message from Nico: Good morning, are you awake? It's going to be a pleasant day today.

And as it turned out, it really was. He had a good night and got finally some sleep. He was way more relaxed than all the previous days. I found him sitting in the chair. He had just finished his breakfast and was wearing a bandana around his head. 

We decided this would be a perfect time to go for a walk around the hallway. He asked me to bring him a wet towel so he could cool down for a bit before putting on the gown and gloves. 

We stopped at the family room and took some pictures with Lake Michigan in the background. 

 He had more strength and was able to walk 2 rounds. 

  
He did not need any platelets today, his counts were at 37. Hemoglobin was at 9.7, which is low but not low enough to necessitate a blood transfusion. His white counts are still < 0.1. Hopefully by tomorrow the numbers will start climbing.

He went for a 3rd round through the hallway with the PT girl after lunch. He takes the walks much better now and does not overheat anymore as soon as he puts on the gown and gloves. Funny thing is, he is now often feeling too cold.  He moved from the chair to the pullout bed to get the warmth of the afternoon sun. But even that was not enough and he needed a blanket to get warm! He fell asleep for a while.

Before I left he showed me his night time bandana. His head is getting cold during the night. That statement from a guy who not that long ago could only function when the temperature did not exceed 65° F.

 Yes it was a good day....

Day +7

Nico could not sleep last night. He told me he was up until 5:00 am. The night nurse took him for another loop around the hallway. He also needed a third platelet transfusion. 

He just woke up as I got to his room around 10:00 am. Obviously he slept through Dr. Burt's morning rounds since he could not remember seeing Dr. Burt this morning.

He had his breakfast, yoghurt and a fruit bowl. He was wondering why nobody came to make his bed or to clean the room. The PT girl did not show up as she said she would the day before. As it turned out, they all came by, but nobody wanted to wake him. 

He called the nurse to get his arm wrapped to take a shower. During the time he spend in the bathroom, his bed sheets were changed. And a little later the cleaning lady came back to clean the room. Ah, the world was in order again. 

Amy Morgan, the nurse practitioner, also came back in the afternoon to give us his discharge instructions. Oh boy, we actually might be flying home on Saturday!
The PT girls came the 2nd time to take him out for a walk through the halls. 

He still gets easily tired and he tried to take a nap afterwards.  But then someone came into the room again, so there is not really a lot of opportunity to get some uninterrupted sleep.   

His afternoon blood draw results came back and his platelets were 40!

Now it was already time to order dinner. It takes about 1h for delivery. He ordered chicken tortilla soup and a grilled cheese sandwich, strawberry short cake for dessert.

This usually means for me to walk back to the hotel. He does not want me to walk in the dark alone. This is really not a problem, there are always lots of people out and about. I feel very safe to walk the short distance to the hotel. But I'm also glad to go "home", relax, have some food, watch TV and have some peace and quiet time for myself... :)

Day +6

Nico's platelet counts went down again during the night to 13. He had another transfusion in the morning. Overall he is doing quite well. 
He had taken a shower already and felt still fit enough for a walk. It takes quite some effort to get ready for a stroll in the hallway. He has to put on a gown, face mask and gloves. We made one lap around the loop (19 times around the loop is a mile).

His leg looked even more bruised today.

He went for a second walk later in the afternoon, not quite as far as the first time. He had way more energy than the previous day. 
His afternoon labs looked promising, platelets were at 23! Maybe we are turning the corner. 
He started to feel the Neupogen doing its job. His legs were achy tonight and he asked for some Tylenol. The nurse offered him something stronger, but he did not want it. 
Hopefully he will have a restful night.

Day +5

Wow, day +5. By the end of this week we might already be on our way home.

Nico started the day with a big breakfast: Omelet, roasted potatoes and a fruit bowl. I was surprised that he is still allowed to eat fresh fruit and also salad. No fresh tomatoes though.

After breakfast he lost most of his energy. He has developed some bruises on his legs just from sitting in the chair. He decided to play it safe and stay in bed for the day. He mostly ate today: ice cream, strawberry smoothie, ice cream again, chicken Cesar salad and chocolate pudding, grilled cheese sandwich for dinner.

Nurse Carolyn taped the lab results for his blood counts on the bathroom door. 

TLTC = to low to count

His platelet count fell to 22, which means he will have a platelet transfusion tonight. This explains the bruises on his legs. He has to be especially careful now and avoid any falls.

I made a shopping trip to buy him some comfort food for the late night munchies.

Day +3 / Day +4

As I am writing this blog post we are already on day +5. But the day just started so I don't now how it will turn out. Only thing I can say, I got a positive response to my text message >Good morning! How are you?<.

Day +3 was the most horrible day so far. We call it roid rage day. Nico has had many steroid treatments for MS relapses. His usual reaction was increased appetite and sleeping difficulties. This time it really had a very scary effect on him. 
He first became very agitated and then kind of hostile. He told me later that he felt like he was close to a heart attack. His blood pressure was high too. He had an episode like that once before. The day after mobilization chemo. It did not last long and he was back to normal again. 
Maybe the combination of Cytoxan and Prednisolone does not agree with him very much. Only thing I can say, I'm glad it is over. Dr. Burt allowed him to stop the steroid pills right away, usually patients are being slowly tapered of the drug.

At one point he finally fell asleep for a couple of hours. As he woke up he was really confused and did not know if it is morning or evening and he had the weirdest dreams. But he felt overall much better and he had a restful night.

Day +4 started off much better. He was very alert, his mind sharp as a tack. He told me: things are happening! The brain fog is lifting. And it is true, he remembers everything and nothing passes by him without being noticed. It is very exciting to see. I hope it is not a temporary thing. He changed all his passwords to make them more difficult. I suggested to write them down for the time being. He is very adamant that that is not necessary.

We had a very enjoyable day yesterday. He was still a little agitated and I had to remind him to relax and take a break once in a while. His appetite is excellent and he does not have any digestive problems from the chemo ( knock on wood).

Meatloaf and green beans

His white cell count is zero now, but his hemoglobin was still in the normal range. I don't have the exact numbers, we did not get a printout yesterday. He was able to avoid a blood transfusion so far.

His favorite nurse Carolyn was here yesterday and she came to change the dressing on his PICC line. We had to put on face masks during that time and she took a picture of us.

He also started Neupogen shots yesterday. This has the purpose to speed up engraftment of his stem cells and to get his white cell production going. He will get these injections every day now until discharge.

Go, stemmies, go!

Day +1 / Day +2

There is currently not much to report. 
On day +1 he was feeling very tired and had some nausea. But around 5:00 pm some energy returned and he ordered food from the kitchen. 

He received a little present on his stem cell birthday, a baggy with some goodies and this poster signed by the transplant team:

Today, on day +2, we had the opposite. He seemed very agitated and he talked basically non stop. I think all the steroids are getting to him. He also complained about not getting any sleep. His vitals are being checked every 4h, day or night. 
He spent the day on the pullout bed or on the chair since the bed felt too hot.

 
His blood pressure kept rising and he was feeling too hot. His white cell counts are at 0.2 (3.5 - 10.5 normal),  platelets are at 57 (140 - 390 normal). Lymphocytes, monocytes, eosinophils and basophils are 0. He had no nausea today and was eating well.
He will get a lower amount of steroids tomorrow and they will be further reduced over the next days. Hopefully that will calm him down.

Other than that, everything goes very well. I guess it will be Groundhog Day from now on.

Day 0

Today is Nico's new stem cell birthday!

What a difference a day makes. Yesterday he was so tired and had no energy and today he bounced right back and was up and about. The catheter did get removed, no IVs were attached to him and he was free to move around. He did not need any help to get to the bathroom. No nausea either!

Around 9:00 am Dr. Burt and his entourage breezed into the room and after reassuring Nico that everything goes as planed, he was gone again. 

The stem cell transplant was scheduled for 11:00 am and the premeds started at 10:30. Premeds consisted of Tylenol and steroids (I believe?). 

Right on time Valerie, the medical technician, rolled a liquid Nitrogen dewar into the room. She also brought a waterbath to thaw out the cells. 

Labels were compared to make sure all is correct. The cells were gently defrosted, transferred to a special pump and hooked up to Nico's PICC line. 

The transfusion took less than 15 min. and went without a hitch. He was closely monitored afterward for any signs of adverse reaction.

Later in the afternoon the physical therapist crew came by and took him for a walk in the hallway.

Today was a great day, Nico will finally get his life back!

Day -1

Today is the last day of Nico's treatment. One more infusion of rATG and his MS will be in permanent remission. 

He told me he slept well  and woke up feeling really good. But once he had ordered his breakfast nausea set in and he started to feel really crappy. He slept through most of the day and did not eat a lot. 

The nurse disconnected him from the IV pole for a while, Dr. Burt's order, since he did not need any hydration until he would start the rATG. She started the premeds at 3 pm and the rATG infusion at 3:30 pm. Nico went back to sleep during all this. 

Around 5:30 pm he finally came back to life and felt strong enough to sit in the chair. His appetite came back too and he ordered food from the kitchen. Not a very eventful day overall. 

 

Day -2

Today was another beautiful day in Chicago, sunny and somewhat higher temperatures. I arrived before 9am at the hospital. First person I ran into was Dr. Burt. He asked me : "Wie geht's?" (Which means: how are you?). He speaks some German.

Nico was already up and sitting in the chair. He was feeling a bit nauseous this morning and he was not sure if he would be able to eat his breakfast that he just ordered. But I could tell right away that he was doing better than yesterday. He was able to go to the bathroom and brush his teeth. It sounds not like much, although it is quite an act: clear a path, unplug IV pole, gather all lines together, get up from chair, get Foley bag off the floor, hold onto the IV pole, try not to fall, shuffle to the bathroom....

Once he was back and seated in the chair again, Dr. Burt came in for his morning visit. Today is Sunday, but that does not matter to him. I mentioned that we could already see changes taking place with Nico and he got really interested and wanted to know details. He never stays very long but he left with a smile on his face. 
Nico and I noticed that he was wearing jeans today. After he left the room we said at the same time - he is wearing "his casual Sunday jeans".

His breakfast arrived and Nico tried to eat some of it, but with not much success. The nurse brought him some Ginger Ale, which helped a bit. 

Today is the last day of chemo, yeah! It was almost time already for the premeds.

We started watching a documentary on Netflix about Bob Marley, called Marley. 

The premeds started to work and he was feeling better. His appetite came back with a vengeance too.

Chicken breast sandwich, Hummus dip, mashed potatoes and Strawberry Short Cake

This is sooo good!

Best food ever!

By 3pm Cytoxan was done! No more chemo. 

The nurse started the premeds for the rATG which puts him usually to sleep shortly afterward. I decided this was a good time to get some exercise and some food. I walked to my favorite grocery store on Ontario - Trader Joe's. I loaded up on food and water, and also a bottle of Pinot Noir. My backpack was quite heavy and started to pull me backwards after a while. I made the trip to the Residence Inn, put everything in the refrigerator and headed back to the Hospital. 

There I got stuck outside the automatic door to the floor. Pushing the button did nothing. I looked around and found a phone number to call in case of a problem. Sure enough the phone on the front desk started to ring, but it was the receptionist's day off. I called Nico and asked him to ring for the nurse to let me back in. As soon as I finished my sentence I saw someone on the other side of the double doors coming my way. Great, I get in! But now I had to wait for one door to close before I could open the one on the other side. I imagined myself spending the night in the room between the 2 doors, curled up on the floor. 

But then the guy who opened the door came back from the outside, just pushing the door open. He asked me if I'm Nico's mom. He knew me from Facebook. He wrote a comment in one of my posts that he would "die Daumen halten", which means he would keep his fingers crossed for Nico. His sister is being treated too and is already at day +5. I should have asked for her name.

Wow, 2 Americans in one day speaking German! The automatic doors are broken and are therefore temporarily not locked. There was a note on the button on the inside of the floor.

Overall, today was a good day. I was really happy to see my son with more energy and he was talking again. That is always a good sign. Tomorrow will be one more day of rATG and then the big day is coming up! From there on out we will be counting with positive numbers...



 

Day -3

The wetter was really nice and sunny, although it was still quite chilly. I moved out from Worcester House and dragged my luggage 3 blocks over to the Residence Inn. My room is on the 7th floor this time and is the exact mirror image of the previous room on the 16th floor. It is a lot nicer and more comfortable than the room at Worcester. Ahhh!

This was Nico's schedule for today:

Pretty much the same as yesterday. But he took a shower today. He did not have a lot of energy and was very quiet. He ate his meals and slept for most of the day. I have nothing really to report. He is doing alright, but all the meds are catching up with him now. One more day of Cytoxan left...

 We had a nice sunset this evening.

Day -4

Today was a rainy and cold day in Chicago. 

I arrived at 10:00 am at Nico's room and found him sitting in the easy chair, just finishing his breakfast. He had a good night and was able to sleep for about 6h. Why did I worry? Here is the picture of the day:

One thing I did not mention in my post yesterday: Nico had a lot of trouble emptying his bladder after the Lasix kicked in, so he opted to get a catheter. He was really worried before hand that this would happen, but as it turned out, this was actually a good decision. This takes away so much stress for him and he gets to sleep rather than running to the bathroom every 5 min. Although the whole thing sounds horrible, but he seemed to have had a good time with the nurses... he was making jokes and everybody was laughing. It took 3 nurses to get the job done(?!). 
This is his program for today:

And here the selection of the goodies, it looks almost like a Christmas tree:

We had a rather relaxing day and enjoyed 4h of Crossroad Guitar Festival 2010 on the big screen TV. 

I am so amazed how well he deals with the chemo. I was really worried after I saw him during his first round of mobilization chemo. He got so week as the day progressed, but now he is so well together. 

He loves everything here at the hospital. You could think he is on vacation and not going through chemo therapy. The steroids make him very hungry and he loves to order food from the hospital kitchen. The service here is really fantastic. All the nurses are really nice and you can tell they are enjoying what they do. The lady delivering the food gave Nico the inside scoop on the food ordering process. Make sure to ask for the day's special and if you would like a snack, there is ice cream stocked for you, just ask for it. 

Today's special: Spinach Ravioli. Dessert: Turtle Brownie Parfait.

I walked over to the Cafeteria at Galter/Feinberg Building. There is a place called Au Bon Pain. They make delicious sandwiches and have a wide selection of fresh pastries. Nico's and my favorite is the Grilled Chicken Breast and Avocado sandwich.

  
And for dessert:

What is really nice here at Northwestern Memorial Hospital, all the buildings are connected via enclosed bridges on the 2nd floor. This makes it possible that you can walk several blocks in the inner city on a rainy day as today without getting wet.

Here you see nurse Briana starting another IV - 8h of rATG. This usually means Nico will fall asleep from the premeds (Tylenol, Benadryl and Prednisolon).

He wanted to sit in the easy chair for a while, so we switch places. The bed is so comfortable!

We are so thankful for this treatment. It has already changed our lives in so many ways. For all of you who knew Nico before he got sick - the old Nico is coming back! He is transforming from a grumpy old man to a funny, talkative and charming young person. His quick wit makes all the people who meet him smile. It is just amazing!

Day -5

Nico started the second part of his procedure today. He was admitted to room 1689 of the Prentice Woman's Hospital, where Dr.Burt treats his patients. We found out that there are currently 11 patients treated for autoimmune diseases. This is his room.

And this are the views from his windows:

Today was the first day of chemo therapy: pretreatment with Mesna, to protect his bladder, Lasix to make him pee, then Cytoxan and rATG ( drugs to wipe out his immune system). Also anti nausea meds and steroids. There were a few more drugs involved which I can't remember. 
He will have 4 days of Cytoxan/rATG infusions and 1 day of rATG only. Days are counted backwards from now on: -5, -4, -3, -2, -1. On day 0 he will get the stem cells  from our last trip back. This will be his new Stem Cell Birthday. Now we will count days as +1, +2, +3 etc. and he will hopefully be ready for discharge around day +9.

Here you can see him with all his goody bags.

 

 

 

 

 

 

 He made it though day -5 ok and we are off to day -4.