Two Month Update

Today is Day +60 after Nico's stem cell transplant. It seems like an eternity, but in the great scheme of things it is still quite early in Nico's journey to recovery.

So how is Nico doing you may wonder. Actually, he is doing pretty good! Don't get me wrong, he still has a long way to go. But his outlook on life has changed dramatically. 
He is making plans for his future. It is not "if I will be able to do this" anymore. MS is no longer in charge of his everyday life. He has his ups and downs, not all days are great days. But he can say on Monday "I will go to a place with my friends on the weekend" and he will be actually able to go when the weekend arrives. Before HSCT it was always - "if I'm feeling up to it". 
 

Enjoying some time out in the desert

What has been happening since our last blog?
He spent a week at his sisters house with 3 kids, 2 dogs and a cat and he had a great time. He went to soccer practice with his little nephew and his niece. Being outside in the sun did not make him shrivel up like a plant during a drought. He walked up 64 steps to get to the soccer field and since it was so much fun he decided to go down and up again.
He was able to spend some time in the family hot tub in 101°F water and he enjoyed it. He handled the heat and it did not mess him all up. 

His legs are giving him some trouble though. Some days they are really stiff and achy. They also start to shake sometimes.

He is doing a lot of exercises to build up his leg muscles and also started physical therapy. 
We found a place not too far from our house and he can get there on his own driving his scooter. 
His balance did get better, he can do squats without holding on to anything. 

Walking outside is still challenging. He uses his walker and sometimes only one of his forearm crutches. 
His right foot is pulling inward and he is walking on the outside of his foot. He will get an A.F.O made to correct this and hopefully it will have a positive impact on his balance and walking. 

On a side note - he can actually feel the bottom of his feet now. At times he is saying that he can feel his nerves regrow and it gives him creepy feelings.

Here he is really proud of his returning multitasking capabilities.

His blood labs are all in the normal range now. He had to stop the antifungal meds for 2 weeks because his liver enzymes went up. But everything is good now. We are on the every 2 weeks blood draw schedule. 
Speaking of medications, he is still taking Neurontin and Baclofen for symptom management like he did before and during HSCT. He stopped taking Valium and Ampyra and hopes to be able to stop the other meds too in time.

His hair started growing in. First his facial hair and he had to shave again. Now it is also sprouting on his head. 

We received already our dates for the 6 month followup visit in Chicago - March 17 + 18/2015. Being a California girl, I'm not looking forward to that visit. I need to get some winter clothes.

Day +26

We just finished our 2nd week back home and I guess it is time for an update. Nico has been very well. Here is what he wrote during that first week at home:

Been home for five days and all is well. No real problems, and as bad as I thought the eating part was going to be, it's really no big deal. I did not have to change anything, just no raw tomatoes, no problem. I feel really good, balance, eye sight, and overall thinking (feel smarter), has improved tremendously. My walking has also improved, although I can only walk really slow and not very far. I no longer wall and furniture surf to get around the house. No aid needed in house anymore, slowly but surely taking short walks outside with walker. Feeling some tingling in my hands right now, from the wrist down about 80 percent of the day, but I can deal with that. My appetite has been good and I weight the same as I did when I went into the hospital for HSCT.
 
As it turned out, the no raw tomatoes issue was never a point. We don't really know how this crept into his discharge orders. As Amy Morgan later confirmed, he can eat raw tomatoes as long as they are washed thoroughly. Here is what it says on the Discharge Instruction Note:

Diet (for 3 month): Avoid foods that may be contaminated such as salad bars and deli counters. Remember to wash all of your fruits and vegetables. Use separate cutting boards for raw meats. Wash your hands immediately after handling raw meats. Avoid raw eggs, meats and fish.

Other positive things that are happening: He walks up and down the stairs in our house without a problem. 

 

 

We made several shopping trips to the mall when the outside temperature hit 100°F. Something completely unthinkable before his transplant. He did not melt down like a snowman in the sun. He does not need much help anymore to do daily chores. I don't have to cut his meat any more. He can pour water into his cup without spilling it all over the table. His eyes have calmed down and he is now able to read. His vision seems to be better overall. But his eyes are still far away from being normal, they are still spinning around and he still has double vision when he takes off his glasses. But "they are not as annoying any more" as he says. He sleeps now during the night and is awake during the day. His energy level is really good.

He has started to do his daily exercises which consist of various stretching routines and special exercises to improve his balance. He is also using a resistance stretch band to regain more control over his arms and hands. 

He uses a rubber ball to strengthen his grip and also 2 golf balls to improve his fine motor skills.

During the 2nd week he got really ambitious and started to do squats to strengthen his legs. He is paying for his effort with sore legs right now, but he says it is all worth it.
Outside he is still using his walker, but we are going to try walking without aide on even surface outside pretty soon too. 

It is hard for him to be patient, he wants to go back to his home really badly.

Day +11

We are home!
Considering the problems at the airports we decided to get there as early as possible. We got lucky with the cab. It was a SUV and we did not have to fold up Nico's scooter. We took that as a good omen. 

The taxi driver dropped us off at the SWA side walk check-in and we checked our bags. It did not take long. The line at the security check was also not bad and we went through there in no time. 

Nico was able to go through the scanner with a little help. Usually they take him to a special area and pat him down and treat him like a 'moron' (Nico's words). 

Some fun at the airport, riding the escalator

Now we had plenty of time at the gate, we were about 2.5h early. The easiest check-in we ever had!

In addition, our flight left 1h later than planed. They were waiting for passengers from connecting flights. 

We got our preferred first row seats and met a nice young guy who took the 3rd seat in our row. Four hours later we touched down with a smooth landing in San Diego. Yoohoo, we are home!

Nico wrote a blog post during the night before we left Chicago:

I would like to thank everyone for your interest in my story. First night out of the hospital, it's 4:30 am now, I know it seems I should be asleep. After 3 weeks of not getting much sleep due to all the vital checks, getting hooked up to the IV machine, and taking meds multiple times through out the night, I guess my body has just adjusted to being awake. While being neutropenic I stayed in bed most of the time. Except for moving to the chair, to move a little bit, I was scared to injure myself and extend my stay at the hospital. Dr. Burt told me it was necessary to move around a bit, so I followed his instructions. Then your counts go up, and before you know it you get discharged. The only thing I left at the hospital is the MS. Now it's up to me to do the rest. Time to go back home and start PT.

Day +10

As I'm writing this we are already back home. My apologies to everyone for being slow with the updates.

I arrived at the hospital before Dr. Burt's rounds. Nico sat in his chair and had a big smile on his face. My counts are up and I'm going home,  he told me right away.

Shortly thereafter Dr. Burt with Amy Morgan and Dr. Han came in and confirmed that Nico could leave as soon as his PICC line was removed. 

We said goodbys. I got another hug from Dr.Burt and also Amy and I managed to get a handshake from Dr. Han. Dr. Han is very shy, I never heard him say a word. 

Nico told Dr. Burt that he is giving him a new nickname, unless he does not like it, he will call him the Miracle Man. Dr. Burt's answer: why would I not like it, I'm feeling humbled!

I suggested to Nico to get some lunch before we leave. He took a shower while we waited and I started packing his stuff. 

Around 11:30 am Coleen, the nurse came to remove his PICC line. The hardest part was to get Nico to shut up for a moment to count to three. I post a video, but if you are squeamish don't watch it.

Pretty long, hooch

It was not a big deal and did not hurt at all. The news of his discharge spread and everybody came by to say goodby.

Jessica and Aladid

Ashley, the PT girl

Coleen

We are not sure on her name, but I think it is Sabrina

Nico drove his scooter to the hotel and I pulled his little suitcase behind me. He was sooo excited to be out of the hospital. 

Free again, yeah!

He talked nonstop and I feared my head would explode. Thankfully he fell asleep for a while on the couch in our room.

I walked one last time to the Cafeteria in the Feinberg building to buy us some dinner. We had soup from Au Bon Pain. 

We did not get much sleep that night, Nico was way to excited about going home. We were not sure if we were able to fly out of Chicago, because there was some trouble at both airports. 

Someone had set a fire to the navigation system facility and most flights were canceled or delayed. But according to Southwest's flight status checker our flight on Saturday was still on.

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...