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.

Emphasis on happy

I was just reading and thinking about a post by another cancer dad blogger. He was writing about not missing today because of fear/anger/resentment about lost time in the future. This is something I've thought a lot about and strive to manage myself. Its hard. Intellectually I get it, but sometimes the depression, anger, and stress are too powerful to overcome.

Buried in this father's words was a powerful point, and one that I had never quite thought about in the way it was presented. This is what I took away. We all hope for a long and happy life for ourselves and our loved ones. Nathan isn't going to have a long life. There isn't anything at all that I or anyone else can do to change that. Take the "long" out of the hopes and what is left is "happy". I might just be able to help Nathan have that. And, for that matter, Julia, Lauren, and Susan. I don't want to preach about the false sense of security and longevity we all feel. It may be tired and almost cliche to say that this fight has taught me that you never know what lies in store for you and how much time you or your loved ones have, but, well, it is the truth.

I'm going to struggle harder against the negative emotions of this all and just try to focus on bringing the happy.

Activism

I don't mean to be too political here. This is a space primarily for me to use to deal with my emotional state when I feel I need the outlet. That being said, I feel pretty strongly about this. For two years running our Federal Government has cut funding for cancer research. Recent proposals will cut funding for a third straight year. I'm not sure where you stand on this administration's tax cuts or the war in Iraq, but perhaps this will give you a little perspective. Some estimates say that our government's proposed funding for cancer research for the next fiscal year is roughly equivalent to 15 hours of spending on the war in Iraq. Funding estimates for neuroblastoma for the fiscal year could be roughly equivalent to funding for 10 minutes of the war in Iraq.

I applaud our researchers. There are certainly some flaws in the system when it comes to clinical trials, but clearly the work our researchers have done has made great strides with cancer treatment. I'm extremely emotionally tied to this issue, but I personally think that we don't put enough importance on continuing the fight against this family of diseases. When one we love gets sick, we want the doctors to know what to do to make them better. We expect that. That expectation isn't reality and if we want it to become reality, someone has to pay for it. We have to pay for it. I want our government to continue to funnel our money to cancer research. If it won't, then we need to increase support to foundations and fundraising efforts that will. Our lives, and the lives of our children that look to us to provide and care for them depend on it.

ABC News did a feature on the proposed budget cuts. If you take the time to watch, you will see that on one of the bullets for programs most in danger from the cuts is "Rare childhood tumors". Nathan's cancer, neuroblastoma, falls squarely into that category.

CureSearch has some basic facts about childhood cancer and the impact of budget cuts. On this page you will also find links that can help you write form or customized letters to your elected officials.

Getting it right

Having a child with cancer is a big deal. Actually, it is a Big Fucking Deal (with a capital BF and D). I can't speak for anyone else, but for me, it impacts nearly every decision I make. It changes how I view considering taking a weekend trip for myself. It changes how I view decisions about work and business travel. It changes how I feel about something like spending a couple hours away from my family to do something that I really enjoy like playing basketball. Tonight I felt so strongly that Susan and I made absolutely the right decision about a very important part of our lives.

I was sitting on the kitchen floor consoling my nearly 15 month old baby girl. She has been very much a Mommy's girl lately and her Mommy had left for choir rehearsal. Lauren stood crying at the top of the three stairs between the kitchen and family room for awhile before I scooped her up and sat down with her on the floor. I heard Nathan and Julia upstairs playing and thought to myself how strange it was to have children old enough to be off playing relatively unsupervised by themselves for a prolonged period of time. For a fleeting moment, maybe a half second or so, I thought to myself, "How nice this is! Why did we have another baby?". It was a quick thought. As I sat there on the kitchen floor and Lauren alternated between babbling about the letters on my sweatshirt, giving me hugs and kisses, and trying to figure out why the magnet would stick to the refrigerator and not my face, I realized that there was nothing that I would rather be spending my time doing.

I spent a fair amount of time today feeling sorry for myself for a variety of reasons. After my split second moment that reminded me how happy I was that we decided to have another baby and how much joy she brought to the lives of everyone in our family, I couldn't help but have a really nice couple of hours with just me and the kids.

It would have been a difficult decision whether or not to have a third child even if we didn't have a seriously ill child in the family. Given Nathan's illness it was so much harder. I can't express how thankful I am that we had a window in which it made sense to even consider having another child. And I feel so blessed and content and thankful that we made the decision that we did.

There are so many decisions that one makes throughout life that can be second guessed. Those decisions are more numerous and amplified when you are the parent of a seriously ill child. I had a really nice night tonight. And I'm so thankful and feel so blessed to be confident that Susan and I got a huge decision right.

Goodbye Gemma

I've met children that have died from this disease. I've followed the stories of lots of kids that have died from this disease. Gemma was different. I'm always sad when I hear that they are gone, but with Gemma we had a special bond. We met her and her wonderful family this past Fall in NYC. She was an amazing and beautiful little girl from Barcelona. She immediately found a place in our hearts and in a short time we grew to love her.

Gemma died on January 25, 2007.

Goodbye, Gemma. We love you.

TO is not a cancer

I'm usually not very sensitive to this type of thing, but lately it has become one of my unspoken pet peeves. I'm sick and tired of the cancer analogy/metaphor. So, think a bit before you use it. You just might be offending someone touched very deeply and emotionally by the real thing. And the act of trivializing cancer might just have more serious impact than you think.

I'm a sports fan and I Tivo and watch PTI: Pardon the Interruption on ESPN. I like the show and its mostly rapid-fire format, and I really like Mike Wilbon. I tend to like what he has to say, but if I think about it honestly I mostly like him because he is an unapologetic Chicago-guy, and he is a Northwestern Wildcat to boot. Unfortunately, every time the subject of Dallas Cowboys receiver Terrell Owens is raised, which is often, he uses the cancer analogy (metaphor I suppose). He says, "TO is a cancer" or "TO is a cancer in the locker room" or "TO is a cancer to the team/league/etc".

Enough already. I understand the analogy. The bad attitude or whatever spreads and "diseases" the whole team. Fine. Except its sports. No one is really going to die. You might think you are emotionally involved in the success of the Dallas Cowboys. You might actually be emotionally involved and impacted by the success of the Dallas Cowboys. I can assure you however, that you aren't as emotionally involved in the Cowboys as I am in my son, who has cancer. And cancer, real cancer, is probably going to take his life. And every time someone uses the cancer analogy, it belittles and trivializes the real struggle with this terrible class of diseases. When you equate some trivial negative thing with the cancer that is now not-so-slowly taking over Nathan's body, you have belittled our experiences. You have trivialized Nathan's struggle. You have lowered the urgency with which we talk about cancer and the perception of the seriousness of these diseases in the public debate and awareness.

You may think I'm overly emotional about this. I am. How could I not be? I think I'm right though. Not only does using this all too common analogy/metaphor cause people pain, but it is also harmful in terms of how people view and relate to these diseases. I'm guilty of having done it in the past, before Nathan's cancer. I won't be guilty of it again. Will you?

Beaten, but looking forward to the weekend

Yesterday I felt beaten and tired and sick and sad, but mostly just beaten. It wasn't a surprise that Nathan's disease had progressed. We knew it was likely. We expected it. Susan saw it on the scan. Hearing and reading the report though was a real punch. Susan made a very honest post to CB. She laid it out there. The responses in the guestbook are beautiful and caring. Susan wondered if she had been too "harsh". I re-read it and couldn't see how. The goal isn't to protect those reading, it is to share with family and friends where Nathan and we are. Nathan got worse. He feels better, but he got worse, and he won't get better. We will try to prolong, if we can, the period of time that he feels well and of course the period of time that he is with us. And right now we really don't know how long those periods might be and haven't asked (although I've got some rough estimates in my head and I'm sure Susan does too). So thats the summary, and it just is as harsh as it is. As Julia might say, "It bes what it bes".

So, yeah, emotionally yesterday sucked. We watched a movie last night. It was good to escape. The movie was appropriate for my state of mind. It was Little Miss Sunshine and it explored very serious themes with a lot of humor. It was nice to laugh, but not be immersed in something silly and trivial. Those things are fine and good, but wouldn't have seemed quite right last night. I wasn't sure I would go to sleep. I tried not to slip back into my head after the movie, but that was hard. I felt ill as I sat in bed watching Letterman, but managed to tired and ready for sleep pretty early. I woke up not feeling like I had slept though. I suppose my mind didn't.

There were some good times yesterday too. When Nathan and Julia were littler, probably before his illness, we often had something we called "Daddy jungle gym" time. When I would come upstairs from work we would roughhouse on the floor of the living room or family room. Last night after dinner I roughhoused with the kids for awhile. Nathan wanted me to sit on the floor so he could "run around me". The girls got in on the act. We laughed and had fun.

We are going to have a fun weekend. We will be spending it with Susan's brother and family a few hours north of here in Greeley. The kids will get to play with their cousin and we will have nice adult company. It should be fun for all and I'm looking forward to it.

In hiding

No posts for awhile. I've been in hiding. I've almost been able to pretend that things were okay. We've had some really nice times over the holidays and with a few weeks of no active treatment under our belts. Scan day has roused me from my hiding. I actually started this post a few days ago, but couldn't quite seem to really get to it. Nathan is having his MIBG this morning. I fully expect his disease to have progressed. And I don't expect future treatment to stop its growth completely, but I'm hopefully that our next stab in the dark will at least slow it. Oddly enough, there seems some pressure off the scan itself now. I view it as a tool that will hopefully guide our decision making process some, but I'm not holding my breath all day like usual hoping for good news. Funny thing about low expectations. They make some things easier.

We have had some good times. We had nice holidays. Nathan has been in school. The kids have played hard. Susan and I went out together without kids like a normal couple may do from time to time. I'm working again. We've found a renewed routine and involvement with our church. I can't help but struggle though. I'm less actively focused on the bad things, but they sure do bubble under the surface. I've posted about this before, so I won't belabor it now, but it comes out in all the wrong ways. My fear and my anger burst forth from time to time, and it is mostly directed at disproportionate reactions to normal kid behavior. Poor Julia. She has it so rough in so many ways. She and I seem to have a similar problem. Her angst bubbles up in behavior that mostly involves being whiny or throwing fits. My angst bubbles up in my reaction to her. Its a terrible vicious circle. I try so hard to make it clear how much I love and enjoy her between our fights...but is it enough?

I have something I have to shake. We have basically decided to take it light with treatment for Nathan. We have shifted from hope for long-term survival to hopefully prolonging a period of good quality of life before Nathan's part in this struggle is complete. This is the right decision. We could fight tooth and nail for every extra day, and in doing so we could load those days with pain, illness, time away from home, time in the hospital, and etc. That wouldn't be right for Nathan or the rest of us. I can't help but feel a bit, down deep, like I'm not doing my job. I *should* have hope. I *should* fight until the end for my son. But, I really shouldn't. Some parents in this world have some disdain for slowing the fight for quality of life. I get that. I feel that down deep. And that disdain and their approach is right for them and their families. It isn't for ours. Neither approach is more noble or indicative of more strength. They are just different approaches to an impossible situation. I wish I could make my gut understand what my head does.

I've got to stop yelling at my kids. I've got to find an outlet for my anger and whatever other mess of emotions I've got brewing. I want to make some good memories while I've got all three of my kids here with me.

Technical terms

More on "fellows"...I was walking in the hall late last night and walked past one of the isolation rooms. The door was closed and I could here a child (probably toddler age) screaming and crying. One of the fellows was standing outside the door talking on his little wireless phone system. I'm presuming he was calling the attending. What I heard was, "I don't know what's wrong. She's flippin' out".

Fellow

As I was riding up to the peds floor in the elevator here last night I was just chatting with some guy about the elevators (quirky). I recognized him. He said, "You are a fellow here, right?". It is funny how the occupation of doctor holds such a place in our esteem and psyche...or at least mine. I felt like that was a bit of a compliment. Even though he clearly just recognized me because I've been living here for the last 40 days, I felt complimented because he mistook me for a doctor.

Tonight there was something minor going on with Nathan (A slightly elevated heart rate that is no big deal). The nurse told me she would inform the doctor that was on tonight. I asked who was on. She said, "Oh? I don't remember her name. I've seen her around a bunch though. She is a fellow." I don't think the nurses are so impressed with young doctors.

The crash

Its a given that prolonged periods of time in the hospital are physically hard. The lack of exercise causes lots of things like muscle weakness, bone softening, etc. As I think about Nathan's current state, I'm really just surprised at how fast he went from weak but not so drastic to really, really weak. When Mom was here last week, at the beginning of the week, he was helping decorate the Christmas tree. He was getting down on the floor to put ornaments on. Getting up and down, moving around the room up and down off a stool, walking normally, and just in general still physically doing well. Before Mom left he started eating less and his activity levels crashed. He started limping and soon he was just not wanting to be active at all. He started PT and OT this Monday. Since then he is *so* much more active, his limping is much less frequent and sometimes not there at all, and he is eating more and wanting to play and do more. So he has made great strides in the right direction...and he still can't get up off the floor without something to grab with both hands and pull himself up with. Its just shocking to me how far his physical abilities crashed so quickly. I guess he had weakened but was still doing some fraction of the normal stuff. Then he lost motivation to be up and around and over the course of a few days he just bottomed out.

The single thing that has turned his disposition around the most and been the best for him physically and emotionally has been starting on physical and occupational therapy this week. He still doesn't want to exercise with me, but he loves to "play" with the therapists. They won't be in over the weekend so I'll try and just maintain things by getting walks in and spending some time in the playroom.

It's time to go home, Daddy

Tonight after we did our nightly medicine and bedtime routine, Nathan buried his head into his pillow and began to cry. I climbed into bed with him and pulled him close and held him. After awhile he calmed down a little bit and I told him I loved him. He told me he loved me too. Then I asked him if there was anything I could do for him and he just said through his tears, "It's time to go home, Daddy".

He settled down and said he wanted to go to sleep. I went and sat and the bathroom and cried.

What Child is This?

This morning Nathan and I spent a long time putting together a very cool LEGO rescue helicopter. We listened to Christmas music and he sang or hummed along to every tune in his sweet little voice. He kept telling me which ones were his favorites. He really likes the traditional Christmas hymns, and I couldn't be happier about that. Those are my favorites too. He was so content and happy and I had to keep choking back tears as I listened to him hum those Christmas songs. It made me so happy to hear him, but I couldn't help but wonder if I would get to hear him sing Christmas songs next year. I have to fight off those types of thoughts and get all the joy I can out of these moments. Sometimes it is harder than others.

WTF?

Day 29. We had a day nurse that we had not had before. Hate that. I feel like I have to break them in and explain every little thing about Nathan's care. Guess what? We also have a night nurse that we have never had. I see at least three other nurses on tonight that have had Nathan on multiple nights. I don't get it.

Tired

Today was a rough day. Nothing rough from the medical angle. No transfusions. No high blood pressure. We slept in. Nathan was a little more bored than usual with the hospital routine. We did crafts. We did a big science project thing we bought in the gift shop. We put together and played a new game that we got in the mail from some friends. We did another craft thing that came in a different package. And we fought a lot. Nathan wanted to blame me for every little thing that annoyed him. Where did I put his Kleenex box? Why did I get crumbs in his bed? Why did I switch where his milk glass and water glass were sitting so he grabbed the wrong one? Why do I have to go check on the laundry again when I just did it?

My Mom is going to make it in tonight. It will be very late. I think Nathan and I are really, really happy she is getting here. We need the break and we need the break in the routine too.