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.