They have excellent nurses here at MSKCC. Last night was a particularly emotional day and I saw something that touched me in the night. The nurse was in. Nathan was sleeping. She drew blood, hung his antibiotics, and programmed his pump. As she opened the door to leave Nathan stirred and moaned. She closed the door, walked to his bed, and patted his back and comforted him back to sleep. The whole thing only took a few seconds and Nathan wasn't even awake and aware enough to realize what was going on. It may have been a small gesture that didn't take much time, but it is exactly the kind of extra, non job description act, that is super important to patients and families.

Thanks, Amy.


Lead Shield

Tonight I'm sleeping behind a lead shield. Or perhaps Nathan is sleeping behind a lead shield and I'm sleeping in front of it. Either way, there is a lead shield between me and my son as we lay down to sleep. Radiation should be cleared tomorrow night enough not to need it. I don't like it. There really isn't much not to like. I can hear him. I'm really not any farther from him than usual sleeping here in the hospital. I can look around the edge to see him. I can step around by his bed and sit with him if he needs me. There is really something that bothers me about the forced separation. It is odd. If we were at home I would want him sleeping in his room far away from me (relative to how closely we sleep here in the hospital).


The Tragic (or why I talk and attempt to blog this stuff)

The intellect is a consoler, which delights in detaching, or putting an interval between a man and his fortune, and so converts the sufferer into a spectator, and his pain into poetry. It yields the joys of conversation, of letters, and of science.

- Ralph Waldo Emerson, The Tragic


Night 18

Tonight will be the eighteenth straight night Nathan has been in the hospital and that I have slept here with him. This stay will easily exceed his previous longest hospital stay which was twenty-one days (or maybe twenty-two) days. His previous longest stay was for stem cell transplant. He went in on day -8 and I think got out on day +13. We are looking at another two to three weeks in here. Nathan has handled it well, but is pretty sad, homesick, and tired of the hospital.

We are on room number three tonight. His first room was an isolation room. At first I thought isolation sucked because he couldn't leave the room. It turns out that with the tiny in-patient playroom, he really doesn't want to leave anyway and isolation was a pretty good way to ensure a single room. We hung on to the single for awhile and he was bumped to a shared room. It was a pretty good room. We had I think three nights with a teenager. The first night was terrible for sleep. The kid was drugged up on pain medicine and he was one of those talkative "drunks". He was up all night and loud. After that night it was okay. Then we got two nights of the big double room to ourselves and that was great. Today we got bumped to the worst room (there are three of them actually) on the floor. It is a double, but they shouldn't be allowed to put two beds in here. The room is small and configured so the beds are at a T. One of the beds (Nathan's) doesn't face the TV. The TV is beside the bed and awkward to look at. I can't walk around the bed to leave the room without pushing aside the curtains to the part of the room for the other bed. It is really a terrible room and it shouldn't be considered for shared use. They said they had to move Nathan to put two girls together, but that logic isn't so sound. They could have moved his current roommate to him and put the two girls in the shitty room. Of all the things to waste emotional energy over, the room isn't worth too much, but it does make me a bit angry. Nathan is looking at a stay here of over a month. That is a long time and the kids that will be here a long time they should take extra effort to make sure can be as comfortable as possible. I'm not sure this move would have happened had the NP that is usually on the floor not been off today. She seems to look after Nate. He will be moved on Monday or Tuesday to an isolation room for his Tuesday treatment. He will be radioactive enough not to be allowed to share a room. I don't think I will sleep much tonight. I hope Nathan sleeps through it all. His roommate just turned three and hasn't adjusted well to the hospital. He hasn't been sleeping well and just woke up at 10:30 pm from a long, hard nap. He is now happily playing with his Grandpa. You can't expect too much out of a boy that just turned three in terms of moderating volume.

Hospital sleep sucks.

Random thoughts: Why do they bother printing hospital names on linens? And, have you ever slept on hospital linens that had the name of the hospital you were staying at printed on them? Perhaps this is a big city hospital issue. I'm not sure if I recall this back at home. My two sheets have different hospital names printed on them. My pillowcases have a third hospital's name. None of them are the name of the hospital that I am in.

Ties that bind

There are some really good things about spending time at the hospital and at the Ronald around so many other families going through similar things. It can be too much sometimes. There is no escaping cancer. When you get together with the other parents, you talk about cancer. You talk about treatment. You talk about living the life. And you never get away from it. I've met many wonderful people, but sometimes I would rather play with my girls in the playroom rather than talk to the other parents. Most of the time it is good. Sometimes it gets to be too much.


The easy way out

We have one test result this week that would make Nathan ineligible to continue on this protocol. He improved after round 1 and remained stable after round 2. The doctor thinks we should continue if we can for the last round he would be eligible for. That probably means an additional week or two in the hospital (Nathan has been in 14 days as of today). I'm not very hopeful that another round will do any good considering we didn't make progress this last time. The doctor seems to think it could. My head says that if there is a chance it could help then of course we should do it. There is a huge part of me that just wants to be done and go home. I could never have even subconsciously hoped for disease progression to throw him off of the study, but if I look deep (probably not so deep actually), I have to admit to myself that part of me hopes that he has built up a resistance to the treatment and that he will be forced off-study.

I'm sick of not having the family together with Nathan in here with one parent and the other one of us out with Julia and Lauren. I'm sick of sleeping in the hospital. I'm sick of seeing Nathan spending his time in the hospital when he should be home in school, going to church, playing with friends, etc. And more than anything I think I'm so very tired from the weight of three plus years worth of making life and death decisions regarding Nathan's care and treatment. I don't think I would feel so bad if the looming decision made itself for us. That would be the easy way out and as of right now, I'm okay with that. I *think* I might actually feel better about having the decision made rather than agonizing over balancing the two weeks of continued hard hospital time over what seems a slight chance of getting some headway out of a third round.


Shared room

Nathan moved to a shared room yesterday. The private room had been such a luxury. I don't think Nathan's roommate sleeps. I finally drifted off to sleep while he was still up talking with his father, light on, and to be fair, obviously dealing with medical issues with his nurse. Nathan woke up at around 4am to use the restroom. Roommate was awake.

As I laid there trying to get to sleep, I took some sick pleasure in thinking that this morning when we were awake at a normal time (because Nathan went to sleep early) and they were trying to sleep after having stayed up, that Nathan and I would not try overly hard to be quiet and keep them from sleep.

When I woke up this morning...roommate was awake.

Nathan complained when trying to go to sleep, but fell right asleep. They kept me up. I'm hating this.


The Wall

I hit the wall last night. We hadn't slept much the night before and it was a bit of emotional day anyway. It was Lauren's first birthday and we couldn't be together all day, but we got Nathan out for a few hours on a pass. The day itself after our normal morning changing of the guard was insane and exhausting. Read about that here at A Night in the Box. We had a nice little party for Lauren. We were all there and that is what is most important. A few other kids from the House and parents came. It was nice and quiet for the most part. Nathan wasn't feeling great. We had dinner as a family in the room. The kids just couldn't quite handle all of the emotions and it wasn't as fun or as good of a time as I wanted it to be. Nathan wouldn't pick something to eat. Julia cried at every little thing. Lauren hates dinner and was cranky. I'm glad we were together, but some of the being together wasn't much fun. That sounds terrible to say. But there it is. There were some high points in the day, but it seemed to last forever.

I brought Nathan back, dropped him in the room, and went and sat in the room that is called the "family center" but is something like a lounge for parents for awhile. I still wasn't very recharged, but settled in for the night exhausted.

I now have a new favorite nurse. Gabby is awesome. Amazing. Nathan's pump beeped exactly zero times during the night. She either programmed it right or was so on top of it that she came in to check on it before it beeped with each medicine she hung. It was fantastic. He woke me up to help him get to the bathroom. I noted that I had slept for a solid chunk of four hours and that was the longest chunk of sleep I had gotten in over a week. We settled back down and the next time I woke up was five hours later. I love Gabby. We have her again tonight.

Today was fine until it really sucked. We changed the guard just before Nathan's scan. My plan was to let Jules play for just a bit before heading back to the House. Her friend Sophia was there again and they had a great time in the play room. Lauren was happy for a long time too. I ended up letting them play. Then when Lauren got cranky I put her to sleep in the stroller and talked to Sophia's parents for awhile. They are a great family and I like them a lot. By then it was nearly time for Nathan's bone marrows to be taken and I knew that they would be done in the procedure room and I would get a chance to see him and Susan on the outpatient side, so I just kind of ended up sticking around. It is all good. Julia loves the play room and it is good for her. There isn't much for me at the House anyway.

If you read Nathan's journal, you will know that the preliminary scan results aren't good. Susan saw the scan and said it looked about the same to her. The onc agreed. We will get an official report next week. This is pretty terrible news really. He is number 1 patient on this study, so we couldn't expect great results, but it seemed like our best shot at a therapy that really could pack a punch. Nathan's body just hasn't handled it well and he has been down and in the hospital. Now we find out that after the first round had really good results that this second round may have not done much at all. It is quite a blow. I was feeling pretty down on the way back to the House and had another encounter with the bag lady at McDonald's (I know, Jill O, I gotta relax on the McDonald's workers, but it isn't really about them you see). Susan and really haven't talked things over too much yet. We will have some big decisions to make next week.

Nathan was in pretty good spirits this afternoon and evening. We will take him out on a pass again tomorrow and hopefully have a few good hours and dinner together again.


About the girl

I had a conversation sitting in the RMH dining room with a family therapist that volunteers his time to consult with the House and work with families. I asked a bit about how to best provide Julia with what she needs through this. Basically he said to provide as much love and patience as we can. Love I can manage. Patience is awfully tough.

Today was all about Julia in a lot of ways. Susan came to do the switch in the morning and as has become the routine, I took Julia and Lauren to the playroom at the outpatient side to hang out. The Child Life people and volunteers are great, there is a lot to do in the playroom, and Julia usually really enjoys the crafts and activities (today she decorated some kind of mirror thingy and made pizza). Usually I let them play awhile and then around lunch we head back to the Ronald for a bit to take care of things I may need to do there and to just get out of the hospital. Today Julia was playing with one of her friends that she made at the Ronald, a lovely little six year old whose brother was in for the day getting blood transfusions. They had a good time and Lauren was having fun too so I just hung out all day without leaving the hospital and switched with Susan in the afternoon. It wasn't too bad and I hope it was good for Julia. She seemed to be having fun.

I'm annoyed with some things about the hospital stay, which is inevitable. We have been here since last Tuesday and we are still having different nurses and nurse assistants. I'm sick of explaining everything to them about the details of Nathan's current routine. This includes how we like to give him his medicine, what pre-meds he needs for transfusions, and that his damn blood pressure is all over the map. Today's staff seems so surprised that his blood pressure is high. They are like, "Wow!". And I keep saying, "I know it is high, but if you look over his chart you will see that there is no reason to be surprised by it. Especially since he had a transfusion today". I'm done explaining Nathan's care to the staff. If they just bring me the meds and teach me how to operate the pump and then left us alone all day I would be happy. And, for the record, we have some really great nurses and assistants (especially one assistant that works nights named Ron who really makes us feel looked after). I'm just tired of having different ones. The concept of assigning a primary nurse is really a great idea. I just wish that it was followed through a little better in the places I've been that claim to do it.

Currently it seems like they have Nathan's scan schedule all screwed up. It was squared away, but we had to cancel all of his outpatient scans and then they had to reschedule them all since he is inpatient. Same scans. Same facility. The only difference is apparently the "outpatient" versus "inpatient" designation and the need for patient escort services for the inpatient scans. There are probably different billing codes or something for insurance. Horrible inefficiency and as of right now it seems like they have him scheduled for his nuclear medicine scan prior to receiving his radioactive isotope injection. Hospitals need to fix this type of thing. It is bad business process.

Nathan, after several nights of going to bed early, wouldn't go to sleep tonight. As I've been writing this entry he has been telling me about how Darth Vader really is Luke's father (he just watched Revenge of the Sith) and explaining to me the many variations of diarrhea. You know how they say Eskimos have so many words for snow? Well, Nathan has apparently worked out verbose descriptions for about as many forms of diarrhea. Now he just needs to make up words for them. He also just informed me that he figured out "what makes 16". The answer is 4 + 4 + 4+ 4. I asked him if he had done that math with his teacher today and he said no, that he had just done it in his mind.

I think I'm doing okay today. I'm in soldier on and focus first on the needs of the kids mode. My patience is okay. I wouldn't say I was in good spirits or bad spirits. I would say I was just feeling a bit numb and resigned. Oh yeah, and very, very tired.


Thoughts of home

I was hit with a serious bout of homesickness last night. I've been homesick in the important sense of wanting to be at home in a normal environment for my family. Last night I couldn't help but think about and actively miss specific physical comforts of home. There are obvious ones like the classic "my own bed", but I was thinking about a lot of other things too. In one of those near dream experiences when you are hovering between awake and asleep I took a virtual walk through our house in my mind. I felt that I missed even something as basic as the layout and floorplan of the house. I felt really homesick as I walked past my guitar hanging on the living room wall. As I walked through the family room I thought about the shows on our Tivo that have probably starting rolling over so we won't have the episodes from where we left off watching. In the kids room I felt really sad as I saw Julia's Raggedy Ann blanket lying on the floor. When she and I are home alone we snuggle/cuddle on that blanket on the floor before she goes to bed. The blanket has a little pouch where it can all be folded up into a pillow. Each night before bed she was putting Soccery (a pink and white Nike soccer ball given to her by the wonderful friend Ouida) to bed in that pouch after we cuddled. I could go on. I'm sure the comforts of home are intertwined with the emotional aspects, as clearly evident in missing a child's Raggedy Ann blanket, but I haven't ever really experienced such a strong recollection and emotional response to the physical things from home.

Susan has been here without a trip back a lot longer than I have. So has Nathan obviously. I can't imagine longer emotionally difficult separations like military deployment. I don't mean to be whiny. I know it could be worse. But bad is bad enough for me.


Roller Coaster

Last night I resolved to begin posting near daily entries here. If ever there was a time to give a real effort to this experiment that is "Cancer Dad", that time is now.

Yesterday and the day before were really tough. With Nathan in the hospital and Susan needing to nurse Lauren before bed and when she gets up, I have nightly hospital duty. Susan and I see each other in passing as we swap sitting with Nathan and hanging with Julia and Lauren. Despite really bad sleep, I'm holding up pretty well with the hospital in general. The first two nights Nathan was up coughing all night and we didn't sleep. Since then he has slept, but is up at least three times a night to use the bathroom. We can also count on a handful of nurse interruptions. Yesterday and the day before things were really getting hard on everyone. Lauren was hating not seeing her mommy during the day. Julia was acting out. Things are so hard on her. She can't see her brother. She gets shuttled back and forth between the Ronald and the hospital. She has zero control over her actions and time. And I'm sure she feels like a second class member of the family with the attention Nathan gets and the attention Lauren, as a baby, demands. So, the weight of this hospital stay was definitely getting to us.

Today I felt differently. Nathan had two good days where he was playful and good natured. Yesterday Susan seemed to have a nice day at the zoo with the girls. Today I had a really good day at the Ronald. We had a nice brunch, Julia got to do crafts, Lauren napped so I could easily shower, and I had some really nice talks with families in the house that I really enjoy. After Susan and I switched roles for the night, Nathan and I watched some of a NASCAR race and he was tired but really trying to stay up to watch some of tonight's football game with me. He is rooting for the Giants because he loves New York so much. I'm, of course, rooting for the Bears (who are off to a bad start on their first defensive set of the game as I type this) and he was having fun about cheering on the other team.

Things turned when he had to get his nightly shot and was getting tired. He was so sad. He kept saying, "Why do my counts have to get better before I can leave" and "I hate my stupid fever" and "I hate stupid counts". Then he drove it all home with, "I'm so sad. I just want to go home". I don't think he meant back to the Ronald either. We are really struggling with how to keep fighting and keep his and our quality of life as good as it can be. This trial was so promising, but we didn't expect to be away from home this long or for him to be in the hospital for any prolonged period of time. It really, really sucks for all of us, but especially for Nathan. Poor beat up guy just wants to go home. I promised him that when it was safe for him to travel that I would take him home. I hope I can deliver on that one.

I cuddled with him while he sobbed. Then a show came on recapping today's football games and I told him who each team that was playing was and where the cities were. He would pick who he wanted to win and then when the recap was done we would see if his team won. He perked up and was having fun watching the show and hiding under the covers. He wanted to stay up for tonight's game but he crashed and fell asleep just a bit before kickoff. At least he was in better spirits.

I really want to be able to take my family home. All five of us are riding different emotional roller coasters right now. It takes a huge toll on us all and it is hard being at different places on the ride at different times (although I suppose it is good that we aren't all at or lowest lows at all the same time usually).


Protocol 06-072

This is the protocol Nathan is currently on.


You may not be at all interested in this, but I find it quite fascinating. They are measuring Nathan's "output" here in the hospital. So he pees in a "hat" in the toilet. I have helped him get his IV pole into the bathroom several times while he has been here and each time he has peed in almost exact 200 cc volumes (on the hat 200 cc is about 6 oz). Typically he outputs 200 ccs. I can count on a 400 sometime during the night. I wouldn't have guessed hat a 45lb six year old boy would be able to hold a whole can of soda's worth of urine in his bladder.

Any medical reason for the consistency and the 200 cc increments?


Nathan has been in the hospital for several days. Over the last couple of days he has felt pretty well, but is just here isolated to his room. He can't do much and way too many things that he has to do (take medicine, get a daily shot, etc, etc) are dictated by others. He is definitely feeling the loss of control and beginning to rebel against it by attempting to assert control. Quite unfortunately, and probably none too surprisingly, he has chosen two things that he can have no control over to attempt to refuse. He tries to refuse receiving his nightly shot. He is here in the hospital because he got a fever while his immune system is compromised. The shot helps boost white blood cell production. We can't skip that. (Susan and I have a few control issues over this one as well since when at home we can do this via IV but here they insist on doing it via shots). The shots are actually no big deal. He has received them hundreds of times probably over the last three years and they don't really hurt him much at all. He just doesn't want them.

The other thing has has begun to try and refuse is to wash his hands after he uses the restroom. We really can't have that. This morning we stood in his bathroom for about five minutes with him saying, "I am *not* going to wash my hands". Finally he gave in. I hope our stays in the bathroom don't get any longer. I had the nurse explain the importance of hygiene this morning. Sometimes he listens better to others than he does to me.