Thursday, October 30th, part 2

Thursday, October 30th

The kids got to meet Pikachu and Mario and get treats and cookies and stickers and balloon animals. It was fun. It was very obvious that Nicholas was thrilled to be out of the hospital. Despite chemo-induced fever off and on all day, he was full of energy and excitement. We were glad it worked out that his release from the hospital coincided with this special event.

After the Nintendo party, we went home and carved pumpkins with the family. We had chili and cornbread for dinner, and Nicholas and Madeline ran all over the house together. It sure was good to have everyone home. The pumpkins turned out nice, even if the kids didn't do much carving. They drew pictures of the kind of face they wanted, and daddy did the rest.

Nicholas was asleep less than 5 minutes after his head hit his own pillow in his own bed. It's great to be home.

Wednesday, October 29th

Backing up a bit, we have commented over and over in our log that the effects of chemo therapy are cumulative. Lark and I learned that first hand this round. We also learned that the effects are not only cumulative for Nicholas, but for us as well. Brutally so.

For Nicholas, this round meant high fevers beginning on Sunday night. Sunday midnight, he had a fever of 103. This totally freaked me out. He has never had a fever that high in his life. No one, however, seemed too concerned and chalked it up to the Ara-C (Cytrabine) that he was getting. They did blood cultures to make sure that there was no infection brewing. He was offered Tylenol but declined. He really hates taking any thing. He gets that from his Dad. He slept fitfully and talked a LOT in his sleep, much to my amusement. (He kept saying, "Pokemon, Pokemon, Pokemon". Where do you suppose he gets that?) Remember that great single room we had? Sunday night, just past midnight, that became a thing of the past. They needed the room for someone who needed to be in isolation. So, with Nicholas sleeping, I packed up all of our stuff and we were moved across the hall. I can't tell you how unsettling it is, literally and figuratively, having to shuttle your stuff to a new room, in your pajamas, in the middle of the night, in the glaring lights of the hospital. All the nurses are looking at you with pity - poor dear, look at her. Meanwhile you're praying that your child (who has a fever of 103 degrees, by the way) doesn't wake up and that you don't wake up your new roommates, who also are dealing with their own set of problems. In the big scheme, this shouldn't seem like a big deal, but it goes down as one of those things that just threatens to send you around the bend.

Nicholas' fevers lasted, off and on, until this morning. But the doctors were confident that it was the chemo and were glad to be rid of us.

The real diffuculty this round was the effect it had on Lark and I. On Sunday, we learned that the girl across the hall from Nicholas was dying. The only way you learn about this sort of thing is by overhearing conversations and seeing tell-tale signs from the vantage point you have from your room. As is happened, our room looked right out to her room. We saw streams of social workers, and crying relatives and groups of doctors huddled around talking. (When we moved Sunday night, she was right next door.) We know very little about her and her situation. She was about 10 years old. Her name was Jessica. She died early Monday morning. I have wondered, over the last few months, if, when a child becomes terminal, they move them to ICU. Well, I got my answer. Thankfully, Nicholas was oblivious to the entire situation. How I wish that had been true for Lark and I. The cold, hard reality of what those parents are going through hit us in the face like a ton of bricks. And there is no getting past it. Up until this point, we've focused on taking care of Nicholas. NOt certainly on what the outcome might be. But with this child right there next to us, we were confronted by the possibility that one day that could be us. As much as you tell yourself it won't, that our situation is different, the doubts creep in when you ponder what Sunday and Monday was like for that family. It breaks our hearts, for them and for us.

The bad thing about the hospital, for Lark and I, is that it divides us. We hardly see each other for days. Lark and I are better together than we are apart. Lark is easy going, relaxed, fun. I am organized, disciplined. At home, dealing with Nicholas's cancer, this is perfect. I make sure we get to the hospital on time. Lark makes sure the right toys get packed. Of course, I'm over simplifying, but you get the drift. Alone in the hospital, confronted by this child dying, we needed the other one to make it bearable. To talk through it, reassure each other, talk about our fears. But that wasn't possible and that made the days unbearably long. The days in the hospital are very isolating. Most days you don't have another adult to talk to and you are surrounded on all sides by children with stories at least as sad as your own (in our case, usually worse than ours). The difficult reality is that we don't know what is going to happen. As I said above, thankfully we are home again and can focus on taking care of Nicholas, Madeline and each other.

If you pray, pray for Jessica's parents, who are going through the unthinkable.

Monday, October 27th

The girl in the room next to Nicholas died last night. I never met her. Stephanie found out her name was Jessica. I did meet her little sister, or maybe cousin or some relative. She was 3, the sister. I met her in the play room. This was maybe during Nicholas' first or second round. She is a cute little girl, but doesnt' speak a word of english, only spanish. We were in the playroom with several relatives, as Nicholas had too many visitors to fit in his room. We were playing some game, maybe bingo or chutes and ladders or something. The little girl played, too. Our soon-to-be brother-in-law Mark tried to speak some spanish with her. He asked her what her name was, but between her spanish pronunciation and her little girl pronounciation, and we couldn't quite make out what it was. She was very cute, and played with us for half an hour.

I haven't cried much since the diagnosis, but I was in tears Sunday night, when we realized what was going on next door. It's so scary, seeing the worst-case scenario played out in front of you. It's probably callous to talk about how the death of someone else's child makes you feel bad about your own situation, but I can't help it. My heart goes out to Jessica's family. But my main focus is Nicholas, and her death makes me all the more desperate for his continued health.

People ask me how Nicholas is doing and when will he "be done." One of the many bad things about cancer is that there isn't an easy answer to that question. We know that his cancer can no longer be detected by the CT scan. That's a good sign, but as our friends Kirsten and Michael found out, that's no guarantee that it's really all gone. And even if it is, that doesn't mean it won't come back. And we have no idea if it will or won't come back. The doctors will know he is cured if the cancer doesn't come back in the next five years. Until then, he might relapse any time. It happens to 30% of patients with this type of cancer. I don't usually let my mind wander down this hypothetical (for now) path. But Jessica's death has made me think about it a lot. A relapse, if it was detected early enough, would mean another grueling chemo treatment, with a slightly different mix of drugs. It would be statistically less effective, but still have a chance to cure him. If it wasn't caught early on, bad things might happen quickly.

There is so much unknown, so much we can't plan for. The end of chemo might not be the real end of chemo. It's like running a marathon, and knowing that at 26 miles, you might have to run another one, but hopefully not. The end is never really in sight. Just what you are hoping will be the end.

Sunday, October 26th

As I hadn't had any breakfast, I decided to go to the hospital cafeteria to get a bagel. I looked over at Nicholas and asked, "want anything to eat?" Well, I had completely forgotten that he was supposed to go under anesthesia in a couple hours, and he wasn't supposed to eat anything. I cheerfully brought him back a donut and gave him a bowl of the cereal we had brought from home. He ate it all hungrily, and I thought, "gee, that was messed up that Stephanie didn't give him any breakfast. He's so hungry!"

I played on a softball team for a few years, and shockingly, I wasn't the best player. I've never been all that coordinated, and I never beat myself up for making a bad throw or missing a catch. I knew my limitations. But I could keep my head in the game, pay attention to what was going on, and know what I was supposed to do in any given situation, even if I couldn't physically pull it off. Surprisingly, that goes a long way to making a below-average athlete into a much better player. So when I would make a mental mistake, I would beat myself up, because I know I could prevent that stuff. So it is with Nicholas' cancer treatment. I'm no doctor. I don't have a clue to the difference between B and T cell lymphomas. I'm not even sure which one of those categories Anaplastic Large-Cell Lymphoma falls into (though I know it is whichever one is more rare). But I can make sure that Nicholas' lines are flushed when he is home, that he takes his swish'n'swallow stuff, that he takes his pills on time. I see that as my responsibility, that's what I can do to make Nicholas better. So when I drop the ball here, I can't tell you how bad I feel. I feel like I'm endangering my son's life with my screw-up, which I am. So even after Dr. Garcia assured me that it was no big deal, that we could reschedule for Monday, that it happens all the time, that a weekend's delay won't upset the effectiveness of his treatment in any way, I felt bad. All day I felt like I was not fit to be Nicholas' dad. I know all parents feel guilty about letting their kids watch too much tv or not having them eat more healthy food, or being too strict or not being strict enough, but that doesn't compare to how you feel when you realize that your mistakes now have much much higher consequences.

Well, I don't want to be too much of a downer, so I'll end on a more positive note. When Nicholas is in the hospital, we have promised him that he will never have to be alone. Someone is always there with him, and it is usually me or Stephanie (though frequently, others will take a shift. We have a wonderful support network, and it is much appreciated). So I was on duty on Saturday, and I hung out with Nicholas basically all day. And if we had been at home on a Saturday, there would have been laundry to do, or errands to run. But in the hospital, there was nothing for me to do but play with my son. It was really great. We had a wonderful time. We played games (he kicked my but at Yahtzee), we went down to the playground and played catch with a ball. (It was a bit difficult for him. He was tethered to his IV pole, so he didn't have much range of motion. I had to shag any ball that got away.) We played with his Teenage Mutant Ninja Turtle action figures. We took walks around the hospital (I would steer his IV tree). We played video games. It is so nice when you don't have the distractions of life and you can just spend time with your child. I'm going to miss days like this when he gets better. I hope I never forget what these days are like and make more time in my life for my kids.

Friday, October 24th

The fun started Wednesday when I took Nicholas in for his clinic visit. We packed all his hospital paraphernalia - just like the last two weeks. We get there, see the doc right away - which was pretty amazing. She said he looks good and ready to admit. We spent some time discussing the merits of a biopsy. His site on his back is looking pretty good so they are on the fence about the biopsy at this point. I told her that it was our preference to have it done. He's going to be sedated anyway, it won't be painful, and it will be very reassuring. She agreed and said she would schedule it. After our conversation, she gives me a weary smile and says, "let me go check to see if there are any rooms available on 3." She comes back with the news that, no, in fact, there is no room for Nicholas, so he will start his chemo on Thursday IF a room becomes available. I'm sitting there thinking when are we ever going to get this going so we can get it over with. I have a mental tantrum - take my son to lunch and head home. Again. About 3 we get a call, we did some bed shuffling and we will have a room for Nicholas later today. Thank God I didn't unpack his crap. They say to wait for a call from the charge nurse. The charge nurse called at about 5:30 - sounding very harried - and says, "Wellll, we could be ready for you by 6:30, but..." and lets it hang there. So I helpfully add, "we could come in later if you want." She gushes, "Gosh, that would be great. How about sometime after 8?" Fine, that way we can have dinner at home.

So, Nicholas and I head to the hospital after dinner. Lark was driving Madeline to Bellingham for a visit with Marty's girls for a few days. The good news, upon our arrival, is that we have a private room. I am trying to lay low and not piss anyone off, hoping that we get to stay. It has its own bathroom and shower and is palatial compared to the 4 bed rooms! They finally hang his fluids at about 10. Now they wait for him to pee. Meanwhile, he's pretty tired so he drifts off. The nurse comes in at midnight to ask me to wake him to pee and do his vitals. Nicholas was so grouchy. The first night in the hospital is so hard on him. He has to get used to being woke up again. At home he sleeps straight through, like a rock. He was crying and not wanting to wake up and I'm trying to coax him to stand up and pee. He finally goes and then falls immediately back to sleep. Unfortunately, the nurse announces that his PH level is not high enough to start chemo, even though he peed enough volume. So, this starts a long night of me having to wake him up to pee. We wake him at 1:00, 3:00, 5:00 and 6:30. Each time, they increase the amount of IV fluids he's getting in the hopes they can get his PH levels up. Welcome back to the days of having a newborn. At 6:30, his PH level had finally increased enough to start his chemo. He and I were totally exhausted by then.

Thursday passed fairly uneventfully. Nicholas took a shower, went down to the playroom and met with the hospital school teacher. About 5:30 PM exhaustion and the chemo meds took their toll. Nicholas began complaining that he thought he might have to throw up. Common side effect of his chemo drugs. He asked me to get the nurse to give him medicine. It is actually quite rare for Nicholas to complain or to ask for medicine, so I high-tailed it out to the nurses station to ask for drugs. She came fairly quickly to give him benadryl and ativan. He conked right out and slept for 3 hours. He woke a few times, pretty unhappy and slept right through Lark's visit. He woke up about 9:30 and ate dinner and played some games with Ben and Traci, who happened to be visiting.

Thursday, October 23rd

Madeline has gone to visit her cousins in Bellingham. She was very excited to go. Returning from a great trip to Spokane with her Grandma, she was eager to visit her cousins on this side of the mountains. So she went up to stay with Stephanie's brother and his kids. In the 18 hours she has been gone, she has called us twice in tears. Now, she is a little tired, as she is getting out of naps (her cousins don't take them), but maybe two consecutive weekends is too much time apart for her. We have lots of very gracious offers from folks to take Madeline for a couple days, especially when Nicholas is in the hospital. We walk a fine line here. We know when Nicholas is in the hospital, home life is very disruptive. One of us is always at the hospital. It does make things easier for us if we don't have to worry about getting Maddie from daycare, or making dinner for her. But we don't want to be shuttling her off because it's convenient for us. We don't want her to be stressed because she's away from her parents. Another thing to worry and feel guilty about. Well, nobody said pediatric cancer would make life easier.

Tuesday, October 21st

Today was Nicholas' special day for the third week in a row. It's a good thing his counts are back up, or that boy would start to get spoiled. I kid, he's already spoiled. Something about getting cancer that makes it hard for your parents to say no to you. And everyone you know sends you a present. For his day, we had pizza for lunch and had a family dinner at Red Robin. Nicholas also got two new Teenage Mutant Ninja Turtle action figures, to shore up his collection. After playing the video game, Nicholas has dived into all things Ninja Turtle. He has watched the videos, gotten the action figures, and decided he wants to be one for Halloween. This costume idea has proven a bit sticky. Stephanie has just finished sewing Nicholas several pairs of pajamas, and is burnt out on sewing. Also, with Nicholas in the hospital this week, she won't have any time to sew. But I wasn't content to have Nicholas wear one of those crappy store-bought costumes. So I took it upon myself to sew him up one. How hard can it be? I mean, I took home ec in junior high, and I vaguely remember a sewing unit in that class.

I didn't bother with a pattern. Really, that's for wimps, right? So I've designed my own costume: green sweats with a kind of turtle shell backpack thing I am sewing. The ninja blindfold mask-thing and martial arts weapon of choice (nunchucks!) round out the deal. I went to put together the turtle shell backpack, and Stephanie was horrified. She had to leave the room to prevent herself from making disapproving looks and sounds and comments, and being a backseat sewer, as I fumbled through the process. But it's coming together. I really have only had to sew about 8 straight lines, which isn't too tough. I hope Nicholas likes it.

If you don't live in Seattle, you may have heard about our record rainfall yesterday. It rained hard all day. It never lightened up. Our house's rain gutters clogged and overflowed. The parking lot at Nintendo flooded in spots when storm drains overflowed. An intersection down the hill from our house flooded. It was supposed to rain more today and tomorrow, so when it lightened to a drizzle this morning, I climbed up on the roof to clean the gutters while the weather wasn't too bad. Shortly after I finished, the sun came out. It turned out to be a real nice day, which goes to show you what the weathermen are worth.

Nicholas went to see his soccer team play again this weekend. He got to warm up with the team, which consisted of dribbling the ball to down the field a bit and kicking it at the goal. He was ecstatic. He loved that, and when the game started, he wanted to play. He'd gotten a taste of the soccer bug, and was jonesin' for more. Unfortunately, this week we'd already had one instance of rough-housing that led to his line's protective loop being yanked out. I wasn't about to let him risk that again. Plus he didn't have cleats or shin-guards. We hadn't really come to play. Nicholas was really disappointed, and burst into tears on the bench. He calmed down quick enough, but I think he was embarassed about crying and didn't want to hang out with his friends any more. We left, but he perked up later in the day and excitedly told anyone who would listen about warming up with the team.

Thursday, October 16th

The doctors aren't worried about anything. It is not unusual for blood counts to take longer to bounce back, especially in the later stages of treatment, where we are now. If, after next week, his counts are still not up, they will do something, possibly administer nuepagen shots or something like that, to help his counts rebound. They did a CT scan last week, and there was no trace of the cancer - a good sign that the chemo is working. The doctors were a little concerned that the spot on his back, where his tumor was, is still a little red. Though they didn't tell us, we picked up that the team was divided on whether this needed further investigation. There was talk of doing a biopsy on the reddened skin, to see if there are any cancerous cells there that might be causing the redness. But lymphoma doesn't manifest itself in the skin, so we gathered that some of the team think it is unneccesary. If they do a biopsy, they will take a skin sample while Nicholas is under sedation for his intrathecal chemo treatment, so I guess they don't have to decide until next week.

So I said it's down to a routine, and it really is. It is amazing what you get used to, and what can become "normal." We've had two weeks where we've gotten all prepped for the hospital stay. Nicholas gets a special day the day before. He gets to go out for lunch to a restaurant of his choice, and he picks the dinner menu. We swing by the video rental store to get him a couple movies to watch in the hospital. And he gets to do something fun, like go play mini-golf or go to a movie. (Tuesday night we saw Good Dog, a boring waste of time. Even Nicholas, with his undiscerning 5-year old tastes, wasn't much interested in it.) Then, we pack up his stuff, almost like he's going away to camp. A backpack of clothes and a backpack of toys, books, games, and other fun stuff.

We went shopping for a Halloween costume for Nicholas. He wants to be a Teenage Mutant Ninja Turtle. I took him to the fabric store. He was very chatty with the fabric store lady, telling her that Daddy has to make the costume quickly, so he can show it to the nurses in the hospital when he gets his chemo. I think that he makes quite an impression, a little bald kid talking about his cancer treatment. But none of it seems unusual to him. He might as well have been talking about wearing his costume to school, or his cousins' house or something. Like I said, it's amazing what becomes normal.

Madeline will be going to Spokane this weekend. Grandma Margaret had planned to take her last week, while Nicholas was in the hospital, so she could visit her cousins, and Stephanie and I would have less logistical worries during Nicholas' treatment. We postponed it a week when his chemo was cancelled. But Madeline is dying to go. She was very disappointed last week, and the only thing that kept her from throwing a fit was that it meant she could go to her friend Mackenzie's birthday party. Since we don't have any comparable consolation prize this weekend, we are letting her go to Spokane, even though Nicholas is not in treatment. Plus, Grandma won't have to change her plans again. Cancer treatment can be so hard on scheduling! Our phone has been out of service for a few days. Some trouble with the line to our house. If you called us, you may have gotten voice mail, which is still working, but not us. That's why. It's working again, now, so you can call us as normal.

Wednesday, October 8th

Today we had our first, very minor, setback. As many of you know, we should have gone into the hospital today to begin Nicholas' 4th round of chemo. It was to begin with his intrathekal chemo injection (otherwise known as his "back poke"). Then a CT scan, a nice visit with the Oncologists and then being admitted for another seven day stay. So, we show up at 11 and wait. One of the things that drives me nuts is the amount of time we spend waiting in the hospital. I hate to wait. Anyway, we wait about a half hour and they draw blood for labs. Then they show us to a little infusion area, usually reserved for kids who are having outpatient chemo. And we wait. Finally the Doctor comes by and starts talking about doing a "punch biopsy." Nicholas, upon hearing this, freaks out. He seems so engrossed in his gameboy, right up until they start talking about anything new. Suddenly, he becomes very aware. Lark had to take Nicholas out of the area, so that I could get the full story from the Dr. At this point, they want to confirm that there is no evidence of cancer. The CT gives a macroscopic view. We know from the CT scan they did a few months ago that the tumor doesn't show up on the CT. However, that doesn't guarantee that the cancer is gone. So, they want to do this punch biopsy to take a small tissue sample from the area around his tumor to see if they can locate any active lymphoma cells. If they do, then they could extend his chemo, or change the drugs he's getting or both. Lark and I, of course, consent to this biopsy. So, off goes the Doc to get things arranged and we wait. Another 45 minutes. And then the Doctor comes back and says, so sorry, can't do the back poke or the biopsy today because Nicholas' counts are too low. So, thanks for coming by, see you next Wednesday. Lark and I sort of look at each other like, Ok? And we pack it up and come home. Poor Nicholas, who had to get all worried and psyched up for yet another unknown procedure, just to be told we'll do it next week. Once he realized it meant he got to go home to the Game Cube, he recovered quickly. Ah, the resiliency of youth!

Being sent home was both good and bad. As you may recall, I thought his next round started on the 15th anyway. So, when they scheduled it for today, I actually called and questioned them, only to learn that these rounds of chemo would only be 21 days apart instead of 28 as we were accustomed to. At first, I was thinking, oh God, I can't possibly be ready to go back in so soon! Then, I figured, well we've got to do this so we might as well get it over with. So, here we are again, scheduled for the 15th and hoping that his counts are okay by then. Meantime, we'll get to enjoy the weekend together.

I want to pass on a few thanks for some cool stuff that has arrived since our last updates. To Lark's Aunt Arlene, for the awesome fleece blankets for the kids. Nicholas LOVES his and will hardly come out from under it. To Susan and Lars, in NC, thanks for the great letter and package. Nicholas really enjoys baseball, so it was right up his alley. To Maria, for doing it all when you visit. Have you considered moving in with us yet? To the families at King's Preschool, who have been making dinner for our family a couple times a week. This is so helpful, especially when Nicholas is in the hospital. Things get very hectic then, and having a nice meal that we can just put on the table without worry, planning or effort, makes things go so much easier. And to the anonymous donors of PTO at Regence, I will never be able to thank you enough for the peace of mind that you've given me today.

As I said above, it's been hard for me to sit down and update the site because despite the fact that there is so little actually happening, there is so much to say. It should be easy to be home with Nicholas while he's feeling well and not having any side effects. I am so grateful and, at the same time, so scared. That this won't last, that the "other shoe" just has to drop, that we're missing something. I actually asked the Doctors during our last round of chemo, if the fact that he was having so little side effects meant anything (like it's not working). They just said no. It just means he doesn't have side effects. Of course, what I wanted to hear is that his prognosis for a full recovery is better. But that just isn't the case. As Lark mentioned last week, our friends Kirsten and Michael just found out that he has relapsed. We are absolutely heartbroken for them. Selfishly, we are also dragged right to that place where that could be us six months after Nicholas' chemo is done. The thought of having to do this again is mind-numbing - as our friends are only too aware. Kirsten and Michael will do what they have to, as will we, but having so much time to ponder the future is dangerous.

The other weird thing, in contrast to what I just wrote, is that you can still have fun when your child has cancer. Seems so obvious, doesn't it. But it isn't for me. I'm one of those crazy, over analyzing types whose mind works overtime trying to sovle problems. And this one just isn't solvable. When they gave us Nicholas' diagnosis I thought my chest would explode. I was so unprepared, so ambushed. That this cyst that became a tumor was cancer was unthinkable to me. I couldn't see then how it would be possible to actually live with all that pain. But somehow it becomes your new normal and you learn to have fun in the midst of your new life. I got to go to Portland last Sunday and watch my brother Ben finish 3rd in the Portland marathon. It was a great finish - with Ben overtaking other runners in the last few miles. I don't think Ben realizes what an inspiration he is to me and what a great role model for Nicholas. I also have been enjoying the baseball playoffs - the games this year have been great - despite the fact that the Royals and Mariners didn't make it. Lark and I, like most of the rest of the country, are really hoping for a cubs - Red Sox Series. Of course, playoffs are more fun in the company of good friends and a few drinks. Thankfully, good friends have been at the ready to drink with me. There have been a lot of other things too, birthday parties, dinner club, days at my cousins watching our "stories." Fortunately there are good times to help ease the strain of wondering exactly how this all will turn out.

I know that many of you have been praying regularly for Nicholas. You have done great work so far. Please keep it up. We have a long way to go. Please also add Kirsten and Michael (and their daughters Margeaux and Annika) to your prayers. They have a long haul ahead of them and they need added prayers. We send all our love and support their way.