Everyday things that hurt

I hate setting the table for dinner. I never used to hate setting the table. I know Nathan will always be a part of our family as we all carry him in our hearts and in our memories, but when things come up that make me count or recognize the number of family members present physically, well that just hurts. There are supposed to be five places set at our table. Five. Not four.

Hess

I played in the basement with the girls yesterday afternoon. I wouldn't have been able to do it, but I got out of the house yesterday afternoon for some me time. Julia had all of Nathan's Hess trucks out. It was very difficult for me to play with them. Nathan really loved those trucks. I have to admit they are really cool. And I closely associate them with last winter's hospital stay in NY. That is where he accumulated a lot of them. So not only were they toys that Nathan really loved, but they also bring up bad hospital memories. Julia has been so starved for a playmate and it was encouraging to see her want to do something other than play computer games or watch TV, so I settled down and we played a little game with Nathan's toys. It was tough at first, but got easier. And Julia and Lauren both smiled and laughed a lot.

Dream

Susan was fortunate to have a nice dream one night about Nathan. I share a bed with her, so I know that her nights aren't usually good like that one. I hardly ever remember my dreams. Over the last few days/nights I've come to the realization that I'm having a recurring dream. These are the ones that I eventually become aware of. They happen over and over again until I begin to be aware of them and the longer they replay the more I tend to remember. Yes, it is a bit like one of those Star Trek eps where the crew is caught in a temporal loop and finally realize it once the deja vu feeling becomes overpowering.

Each night I wake up and I have dreamed Nathan's death. It is strange though, because the details are all wrong. I won't go too much into the details because it is really pretty terrible, but things are different than they really happened. For example, in my dream it is nighttime instead of morning. Strangest of all may be that in my dream he dies on Susan's birthday.

This is a dream I could do without remembering and one that I wish would stop replaying each night.

Hanging In

I've gotten a few emails lately from people checking in on me. All of them have noted my lack of blogging as of late. There are several reasons I haven't posted much. First and foremost is that there just aren't any words. It is all too overwhelming to capture. There is also a practical reason for my infrequent blog posting. I don't tend to spend a lot of time in front of my computer unless I'm working, and I haven't really worked for a couple of months now. I'm easing back into work today and in front of my computer. Most of my blog posting comes when taking work breaks, so perhaps the pace will pick up a bit now.

It is impossible to answer the "How are you doing? No, I mean how are you really doing?" questions. I normally say something like, "As good as could be expected", "We are getting by", or the ever-popular "Okay". Nathan died two weeks ago yesterday. I really am glad he isn't suffering anymore, but in general I don't think my pain has subsided at all (and I don't expect it to have subsided yet). Mostly I just miss him. And "miss" in this context is such an inadequate word. I walk around with this terrible sense of wrongness. And I still feel a lot of guilt/pain/confusion/etc over the decisions we made and care we gave over his last few weeks (If anyone remarks in the comments about what a great job we did or about what great parents we are, blah, blah, blah...then I am likely to disable comments forever on all posts to this blog.
That is the last thing I want or need to here from anyone.)

Yesterday I did some basic putting toys away in the basement. Our basement triples as my office, a playroom, and a guestroom. Over the last few months it had gotten completely out of control. I wept as I sorted toys. I would remember playing with a particular toy with Nathan. Or I would pick up something I know he had an attachment to. The worst was when I ran across his wallet laying on the floor. He received cash gifts over the years and had a good chunk of change saved up. In June it was obvious that if he was going to enjoy that money it was time for him to spend it, so he took his wallet and we went and bought Playmobil toys. He had five or six dollars left after the shopping spree. I'm sure no one is ever really ready to "go through their loved one's things", but I know I'm not anywhere close yet based on the exercise of just sorting toys in the playroom.

Today is Julia's first day of kindergarten. She is adorable and excited. I think she will thrive in school. I know she needs the routine and the activity. Our home environment hasn't been all that healthy for her as of late. I was really happy taking her to the bus stop, but also sad that Nathan wasn't returning to school. Julia had always counted on her big brother showing her the ropes of the school bus. I feel bad for her a lot. There are so many things I want to just be completely happy about sharing with her, but so many of those things have to be bittersweet because of Nathan's absence.

I'm not really sure how Julia is. I try and give her lots of opportunities to talk or work things out, but she generally avoids the subject. I noticed her erasing Nathan's saved profiles from computer games they shared. She just shrugged and said that he didn't need them anymore. I was worried about that trend, but she has done some things lately that I find encouraging, like including Nathan in pictures she has drawn of our family. I want her to grieve and to do so age appropriately, but I don't want her to try and forget about her brother. I'm sure she never could though. What a terrible thing for a child to deal with. I don't know how to act based on my crazy emotional state. What sense can a child make of it?

We have been flooded with cards and letters and just a whole lot of love. I can't thank people enough for their support. It really is amazing. Thanks to everyone who was at Nathan's memorial service, especially those that traveled or held down the fort at home so that others could travel. I'm still a bit in shock over how many people came from great distances to show their love and support for our family. Many thanks.

So...I'm here. I'm hanging in there. I'm doing as well as can be expected. And I'm okay.

Impossible

It is impossible to explain what it is like to watch Nathan slipping away. Some of the routine begins to feel normal, like this weak and withdrawn Nathan is the "real" Nathan and then little things creep into the day that really hit hard. Some of them just rip out your heart like seeing him reach out to hold his baby sister's hand when she comes to sit next to him while he lies in bed watching TV. I tend to feel so profoundly sad over the tender moments like that. Lauren is one. My earliest sketchiest memories begin at around three. She will grow up hearing about Nathan through us, but she won't have her own memories of her big brother.

It is also so hard to see him struggle to do things that he should be able to do. I just watched him wear out from putting about five or six pieces of Legos together. He had to push on some of the pieces pretty hard. I could see the tendons straining in his rail thin arms. It seems that he sometimes has a hard time focusing on the pieces to get them in the right place. He said he wanted to finish putting the helicopter together tomorrow and closed his eyes and fell asleep.

To-Do

To-Do List:

1. Explain to seven year old son that he is dying. (The books and the hospice people say he already knows.)
2. Explain to five year old daughter that her beloved big brother is dying.

The don't teach this stuff in parenting school. Perhaps they do. I assumed I could handle the whole parenting thing without formal training.

Laugh

Nathan is sitting next to me on the couch doing something on the computer. He just let out a genuine laugh. They are few and far between...and beautiful.

Monotony

I seem to post here a lot about how I wish things were. Or rather, I seem to post about how I think about things, not necessarily how I actually feel about things. I want and try to cherish each and every one of these days, but the truth is that much of every day really does just suck. The days are so long. It is crazy how long each and every day seems. They drag on forever. I got up with Nathan at 4:30 am the other morning to do something for him and I knew I wasn't going back to sleep so I stayed up. Now *that* was an even longer day. At the end of each day I don't want to go to sleep because I know I'll just have to get up and do it all again.

I took a three hour nap yesterday. I didn't mean to. I just laid down for a short rest and crashed. I think it was perhaps one of the best and most restful stretches of sleep I've had in awhile.

Hell?

With Nathan under hospice care now, it has been hard for me to not think about the last 4+ years. My feelings are conflicted. It has been hard, for sure, and sometimes (okay, often) I focus on the negative. I have to fight that though. The last four years can't have been hell. I can't let myself view over half of the time we have been blessed with Nathan as a living hell.

As the physical and emotional exhaustion take hold now, the challenge becomes to not cheat ourselves of the time we have. Some of it will be hellish. There is physical pain. There are the early stages of grieving. There is crazy fear that encompasses all kinds of things. We have to try to turn it on and off as quickly as the changes come because we are rapidly approaching the cap on the smiles, hugs, and good times as a family of five. One of my many prayers is that we can, if not enjoy, take some comfort in those good moments we have left.

Tough days

Nathan has been very uncomfortable the last two days. We can't and wouldn't want to let him suffer, so we give the pain meds pretty freely when he hurts. It has knocked him out, but eased his pain and comforted him some. I can't describe how terrible it is to have him just asleep upstairs while we go on about our business (our business of mostly being emotionally unstable and trying to just get through with the girls). It is this horribly strange situation. He lays upstairs unable to be an active part of the family without being in terrible pain. The pain and sleep steal precious time. Its like he is halfway gone already on those days. Every day, hour, minute, second...the cancer marches on. He gets thinner and thinner. It breaks my heart every time I pick him up to carry him to a new position or to the bathroom and I realize how he is becoming easier to carry as he sheds pounds.

There are still the smiles on the good days. We could sure use one of those again soon. And even on the bad days there are still the quiet and insightful remarks that are Nathan's trademark. Perhaps we can get a handle on what is causing this increased pain and get him comfortable and somewhat active again. That is my current hope and prayer.

I don't want to have to miss him already, but its hard not to as he lays asleep in his room.

Can there still be joy?

One of the strange things that Susan and I have talked a lot about lately is dealing with how others perceive how things should be for us. Or I guess how we perceive they perceive...if that makes any sense.

Our child is dying. We have know this for a long time. We suspected it was likely years ago, but for the last year we have known it was happening. In recent weeks the decline of Nathan's health has become much more pronounced. We really don't know how much more time we have left with him, but the units to measure it in are weeks or months. This reality is every bit as horrific as you imagine. But it is different than you imagine. I know that it is different for other parents experiencing it than it is for us, and it is even all that more different for those lucky enough to never experience it. If you have friends or acquaintances dealing with something like this, do them a favor and don't project how you guess you might feel and act onto them. You will be surprised that they don't act and feel that way and your surprise will cause them unnecessary guilt or questioning about their way of dealing and living their lives.

You might be surprised that they don't sit around at home acting on their darkest emotions. They may not stay glued to their sick child. They just might go ahead and go to choir rehearsal or spend Monday night playing basketball. And they just might not be able to help finding a little bit of joy in the midst of their sorrow.

Susan posted about finding moments of joy in these dark days. I can't help but feel some joy ever day for my three children. It is complicated and bittersweet when it comes to Nathan. My girls are so wonderful. Julia is so dynamic and free-spirited. Lauren is adorable. I can't help but find happiness in my daughters. And it is my responsibility to allow myself to feel the joy the bring and to let them know that it comes from them.

I only know how I feel and act now. In many ways I'm a mess and I could become a complete wreck. We are losing a son. Our pain reflects the love we have for him. That is a lot of pain. We have two incredible daughters who we love and who will always need to know how much we love them and how much joy they are able to bring us even in the midst of our family suffering and loss. The joy I experience through them reflects the love we have for them. That is a lot of joy.

I can't imagine going through this without Julia and Lauren. They bring me great joy even today and I pray that I have the strength to continue to allow myself to fully experience the happiness that they bring me.

Summer nights

This evening I was sitting in the living room on the couch with Lauren. I was reading to her and she was flipping through pages in the books. Nathan was laying in bed asleep at 6:30pm. His window was open just a bit to let fresh air in. I thankfully heard no moaning or cries of pain, but through the open window, relayed through the baby monitor, I could hear neighborhood kids playing in their yards.

Nathan was either in pain or asleep today, but never awake and comfortable.

Struggling

Things have been tough lately. Nathan's quality of life has really slipped over the last week+. We don't know exactly what is going on and it is tough to determine how much we really want or need to know. If you read his journal you know that he is generally exhausted, has experienced increased discomfort in his legs, and is just really run down and tired.

These developments aren't unexpected. They are very expected. We don't know that things will decline steadily from here, but that is clearly the fear. And it is tough fear to cope with. To be honest, we've had a longer period of relative normalcy than I expected after coming home from NYC at Christmas, but it hasn't been as long as I had hoped for.

I'm personally not dealing all that well. I'm not finding the balance between doing the things I need to do to keep myself functioning and giving the time and love that I need to give to the kids. Getting it right it is an impossible task, but I have to get closer. All family time is sacred in its own way. The time right now, no matter how hard or how scary it is, is more sacred.

I'm also struggling with work. I sit down and I work but my head is so scattered. I can't switch between tasks without getting lost. I'll read the same paragraph over and over before the meaning will sink in. I'll look at code that I wrote and am familiar with and it will just baffle me. Its like I have to bang and bang and bang any detail or understanding into my head. I feel like tasks that used to be easy are now difficult. I do what I can and the people I work with and for are very supportive, but its crunch time and I find myself not able to come through. It is a terrible cycle. I feel emotionally distraught because of my personal life so my work suffers so I feel emotionally bad about that.

And when things are really bad, how do you answer that seemingly innocent and casual, "How are you?", greeting that people have for you?

2073

Sometimes I write something and think it captures what things are like and possibly gives readers a glimpse into the life and how it is for me. Most of the time I fail. There is a Boston cancer dad, Will's Dad, that really just hits the nail on the head in a lot of his writing.

Many people have asked me about our summer plans lately. We don't make plans. We avoid plans. Planning is bad. Planning brings the fear and the worry bubbling right on up. Will Lacey's father nailed it in his post, Save the date! Nov 28 2073. He called a preschool to prepare for Will's entry in the Fall.

If I just called a restaurant to book a reservation for my 100th birthday celebration in 2073 I would feel less awkward and weird than I do right now after that call. In any event, we’ve been asked to call so we’ve done it.

That is exactly it. That is how I feel about any talk that involves Nathan's future, no matter how soon in the future the talk may be about.

When basketball sucks

Yesterday Nathan got dressed in his "basketball clothes" in the morning. It was a nice, warm day and he put on a satiny sleeveless shirt and matching shorts. One of the first things he did was to suggest that we play basketball. I love basketball. I love to just shoot around and I love to play. But when Nathan wants to play, no matter how hard I try, I dread it. "Playing basketball" with Nathan and Julia consists of me shooting around, maybe the kids throwing it into a little kiddy hoop, the kids dribbling and throwing it to me, and occasionally me lowering the rim and lifting them up to dunk. It should be fun.

In the afternoon I pulled the hoop down into the cul-de-sac. Julia wanted to sit under the hoop and coach. I shot for a few minutes. Nathan ran around, dribbled it some, and tried to take shots at the big hoop. After a few minutes his legs were so "tired" that he really had to struggle to get up off the ground if he had to bend down to pick up the ball. He sat down to rest and then quit.

I played hours and hours of basketball with my Dad and brother when I was growing up. Josh and I would shoot, play H-O-R-S-E, tips or play one-on-one. When Dad played we would sometimes play H-O-R-S-E, but twenty-one was the family game. I have such amazing memories of humid Illinois summer nights playing in fading light on the gravel driveway with a backboard bolted to an old telephone pole. My memories of growing taller than my father are tied to basketball. It was a big deal when I was strong enough, tall enough, and quick enough to beat my Dad at twenty-one. Those games were hard fought and often ended in Josh or I storming off. Gentry men (and boys) do not like to lose, or to not do something as well as they feel they should be able to. Dad was always the favorite during those high school years when we were all around enough to play. He always had the better shot and he lived by the free-throw line. I bet there was something bittersweet about seeing his boy get big enough and be able to beat him occasionally with growing skill and the advantages of youth. As a parent I can now project a bit and while I can imagine it was bittersweet, I bet it was more sweet than bitter.

Truth be told, even without his illness I think Jules is our most athletic child. My growing up basketball memories are about my brother and my relationship with my Dad. There is no reason that I won't have great experiences with my daughters around sports and athletics, but they aren't going to be as big as me. And I won't compete with them (or they with me perhaps) the way I hoped to with a son. With Nathan.

So when Nathan wants to "play basketball" and share and be a part of basketball with me, as much as I know I should embrace it, I can't help but to feel cheated. There are a lot of things and times where I can let go and just enjoy the moment and have fun. Driveway basketball is such an integral part of my memories and my experiences as a son in the father-son relationship that I just can't get there.

And the voice

All four first grades at Nathan's elementary school participated in a musical last night entitled "Marsh Music". There were ninety-four first graders participating and two "featured" roles. Nathan snagged one of those featured roles and he even had a line to memorize. He did fabulous...of course.

I had a wonderful time watching Nathan and the rest of his schoolmates. I just tried to soak it in, just like I try to soak it in when he sings in "big church" with his choir. I'm going to miss a lot more performances by Nathan than I will ever get to see. That reality can put a lot of pressure and odd emotion on the ones that we are experiencing in the here and now. Last night, for me at least, Lauren was a big factor in just settling in to enjoy it. She absolutely loved the entire thing. She perked up and paid attention as soon as the kids started singing and she clapped along to each song and applauded with the crowd at the end of the songs. For awhile she was even up dancing along in the aisle. She giggled and directed and when she recognized her big brother out there in front of all the other kids she laughed and pointed. It was a good night.



Nathan's line was:

And the voice was a varied and stirring one that ought to be better known.

As he was memorizing and practicing the line it struck me that Nathan has a wonderful voice that won't get the opportunity to be well known. As I thought about it more I'm taking some comfort in that Nathan's story and spirit are known to many through the wonderful community of people that has grown to support him and our family. It is a cold comfort but I guess I'll take what I can.

Best "featured blackbird" ever.

(Cross-posted to A Night in the Box and Cancer Dad)

Heavy Heart

It may seem silly, but it is true. Coincidence? Probably, but it is a consistent coincidence. Bad news in the neuroblastoma "community" comes in waves. We lost another friend yesterday and I just read a heartbreaking, brutally honest, and inspirational update from the father a beautiful little girl that will lose her battle any day now.

Boom. Boom. The blows keep coming.

Body blows

For much of Nathan's illness I have avoided becoming too much a part of "the community". This is a multi-edged sword. There are so many benefits to being active on the mailing lists and getting to know the other parents. First and foremost there is the knowledge and experience sharing. Neuroblastoma may be relatively rare, but there sure are a lot of really smart and engaged NB parents out there not only gathering their own information but making a real difference in the future of neuroblastoma treatment. Then there is the actual community aspect of it. There aren't that many people out there that have gone this road, relatively speaking. Every circumstance is different, but there are definitely things that only other NB families can relate to. The flip side is the immersion in it and the bad news. For me personally, our lives are so dominated by neuroblastoma that I have to take a step away and not be "all neuroblastoma all of the time". If Susan and I both had the same reaction it would be a problem, because her involvement on the "N-BLAST" list has been invaluable.

So I keep my distance and I honestly don't know nearly as many stories and details of other kids' ongoing battles with neuroblastoma. Its different though when you meet the families, and especially the kids, in person. I met so many wonderful kids and families in New York this Fall/Winter. And now I can't help but follow their fights. These kids are in lots of different places. Some of them are in "good" places where they are NED and hopeful to avoid relapse. I pray that they will remain NED. For so many though, there is just a stream of bad news, bad test results, and terrible prognosis. Some of them aren't with us any more.

Each piece of bad news is a body blow. It just keeps taking the wind out of me. A big part of it is genuine affection for these children and their parents. Equally as big a part of it is that it mirrors or foreshadows what is in store for us.

This is "rare" and for most people that aren't impacted directly, I think their view of it is isolated to a friend or family member. "Rare" is such a loaded word. It's connotation is dangerous. People here it and they think "not many". Well, that isn't the case. There are many. Way too many.

People don't suck

Nathan's CaringBridge journal has topped over 300,000 visits. I'm not sure how they count, but no matter how they can't, that is a lot of people coming to check in on Nathan and our family a lot of times. Many of those people have also contributed financially directly to our family for medical-related travel and expenses, and also contributed in Nathan's honor to pediatric cancer fundraising events like Lunch For Life and St. Baldrick's.

There are a lot of people who would have helped us out in different ways if we had let them, or asked for it. We could do this alone, but it sure would be a lot harder.

People don't suck. They are, for the most part, pretty incredible and willing and wanting to help those who need it.

Jack Brown

Going back and forth to New York over the years we have met a lot of wonderful people. This Fall we met a wonderful little five year old boy from London named Jack Brown. When we met Jack he was receiving the standard 3f8 antibody treatments for neuroblastoma. Later in the Winter Jack was back after having relapsed in his brain. MSKCC has a very promising clinical trial for brain relapse. It is similar to the "hot" antibody that Nathan received, but in the brain version they introduce lower levels of radiation directly into the brain. Several kids have had great responses.

The last time I saw Jack I was walking through the dining room at the Ronald. I had just grabbed a sandwich and was in a hurry to get somewhere. He was sitting at a table eating by himself and he cheerily stopped me and insisted I join him. I was in a hurry, but just because that was the habit. I really didn't have anywhere to be right away, so I joined him and had a nice lunch with Jack and his Dad.

Jack and his family traveled to New York immediately after learning of his relapse and as a result are having trouble making their stay here legal in terms of visas and such.

The BBC just did a short story about Jack. Parts of it that aired were filmed at the Ronald and at MSKCC. One of the doctors on the neuroblastoma team, Dr Kramer, is interviewed. Dr. Kramer heads the study that Jack is enrolled in.

Here is a link to the BBC story.
Here is a link to The Jack Brown Appeal.