Cancer Dad

Catch

2010-07-06T07:45:00.000-06:00

We had another fun year of fireworks on Hilton Head Island, SC. It is a great scene. People gather to stake out a spot on the fairway of the 18th hole of the Harbour Town Course. The setting is really beautiful with the sun setting over the water of the sound and a lot of people hanging out and happy. It really is a great time and a great setting.

And there are a lot of fathers tossing footballs around with their sons.

Even the good times with lots of smiles and laughter are still tempered by grief. You probably wouldn't have recognized it if you had been there. I don't know if it is something that I am learning to live with it, or just know how to hide. Or if that isn't just two ways to say the same thing.

10

2010-06-16T17:22:00.000-06:00

Should be celebrating a decade of fatherhood today.

Jealousy

2010-04-16T21:00:00.001-06:00

I am so happy for and so jealous of the cancer parents that are winning their battles and spending time with their precious children.

I wouldn't have it any other way and there is a part of me that rejoices for them. Their joy doesn't make me sad. But the awareness of their joy seems to sharpen my pain at times.

Julia (8) recently expressed to Susan that she would be happy if childhood cancer was cured, but that it would make her a little sad too...sad that the cure wasn't found in time for Nathan. I wasn't there, but it seemed that she felt that there might be something wrong about feeling sad about something so wonderful. There isn't. It is just how it is.

The way it is

2010-04-08T08:30:00.000-06:00

A Facebook friend and fellow cancer dad updated his status with, "Off to school, chemo, and then Will's first T-ball practice". I pray for his family's continued strength and for the day that Will is cured and "chemo" no longer becomes a matter-of-fact part of a normal day for any child.

Longing

2010-03-28T12:14:00.000-06:00

I'm feeling pretty good now, but was feeling very low this morning. I was longing for the simpler times of my childhood and the love and protection of my parents. And I was wishing for my girls the same sheltered experience that I had. That they will never have. I never knew grief as a child. And I didn't have parents that were raw and grieving and scarred and broken.

For the most part I honestly prefer being grown up to being a kid. But sometimes it would be nice to be so naive and to live back in a time before the pain. And I feel so sad for my girls. Memories of childhood will never be the pain free sanctuary for them that they are for me.

Things not to say when expressing sympathy to someone about their lost love one

2009-08-09T16:11:00.002-06:00

"I hope he didn't suffer much."

Does it get easier?

2009-07-16T10:27:00.000-06:00

I was recently talking to an acquaintance that knows Nathan's story. He was talking about his children and, as I always do when discussing my children, he mentioned a son that he had lost 20 years or so ago to a traffic accident. He said, "I know you know what that is like. It doesn't get any easier. You just learn to live with it and keep on going."

The next day we were talking to close friends and something about how hard this time of year is for us came up in conversation and someone expressed that they hoped that it would get easier with time.

The two different perspectives struck me having heard them on back to back days.

I've never heard anyone really express this well in words. I know that I can't. It hurts as much today as it did 2 years ago, and yet here we are doing our best to keep living on. And if it never gets easier, how does anyone manage? And yet I was sitting outside in the beautiful Colorado sun listening to a father tell me quite casually that after 20+ years that it never got easier and there he was still carrying on.

I fear a day when this might get easier. If it gets easier, what would that say about my love for Nathan and the strength of my memories of his time here with us? I don't hope that it gets easier. I hope that I can find the strength to enjoy the many blessings (included in those blessings are my memories of Nathan) and experiences of my life while still feeling the pains of the profound losses.

Birthday party

2009-01-19T20:05:00.000-07:00

Susan blogged about it before the event. I'll post a quick little something here now that it is over. Nathan's seventh birthday was on June 16, 2007. He died just over a month later. Julia has talked for a long time about wanting to have her seventh birday party at Chuck E Cheese's, just like Nathan's was. We had our reservations about this, but we knew that for Julia it was a way to stay connected to her brother who she misses so much. We agreed to let her have the party there. Like so many of these things, the anticipation is worse than the reality. I was excited for Julia before the party because she was so excited, but I cried a bit in the shower getting myself ready to head off to the party. She had a great time and for the most part I did too. Birthday parties for seven year olds are tiring, but I came away from this one exhausted. I think the day carried with it a bit of an extra emotional toll, but Julia had a great time and we all held up.

I'm sad and worried for Julia. One of her coping mechanisms is to very deliberately and purposefully walk in her brother's footsteps. It won't be long before there aren't any more to follow (at least not the kind that she has been following).

Retired

2008-08-01T07:48:00.001-06:00

Cancer Dad is likely retired. This was a basically failed experiment in that I expected to use it to write about Nathan's illness and then to continue to use it after his death to write about our experiences with grief. Either I don't really let things out through writing, or I just never got up the nerve to write much of the raw truth. I'm thinking it is probably a little of both. I'll probably leave this live for awhile just in case I end up needing a place, but I'll probably just mix my Cancer Dad-like posts in at A Night in the Box.

Observation

2008-06-23T07:54:00.002-06:00

Grieving is hard (the pain, depression, emptiness, anger, PTSD-like flashbacks, etc, etc, etc).

Grieving itself is not hard to do though. In fact, it is easier to do than to intentionally work on correcting or healing those wounds caused by grief or the events leading up to it (damaged relationships, neglected relationships, forming some kind of routine that feels normal, focusing on what you have to feel blessed about rather than the loss, etc, etc, etc).

How is that for a trap? It is the most terrible thing ever and while it is natural and necessary, aspects of it continue to erode and harm. And yet it is easier to succumb to it than it is to fight it.

And I don't buy the talk about not getting through it until you "embrace it" and whatever other fluffy spins people may put on it. I get that it is natural and necessary, but it is just another necessary struggle in an already long list of struggles.

Now only if I could start fighting the fights that I want to fight instead of this one...

Reminder

2008-06-09T07:39:00.002-06:00

This was shaping up to be a hectic and busy day before it started. We have landscapers coming this morning to begin a total re-landscape of our backyard. We are thrilled to have it done, but have just a little reason to be a bit concerned about how smoothly things might go. Susan has a busy day with the girls *and* is scrambling to prepare to leave on a trip with them very early tomorrow morning. I've got too much on my plate and we are in our most critical crunch time of any project. Lauren woke up screaming and cranky. Julia broke down and sobbed because we told her Susan can't sit next to her on the airplane at takeoff (the three of them are flying on a small jet configured with two seats on either side of the aisle). She just sobbed but couldn't articulate what made her upset about that.

So that is how today was shaping up. Then I sat down a little early to work and my Outlook calendar decided it should remind me that it is one week until Nathan's birthday. Like I needed the reminder.

Stage

2008-06-04T12:15:00.002-06:00

People talk about "the stages of grief". The most well-know model is probably that known as the Kubler-Ross model. I don't actually know too much about the model. I do know that labeling things as "stages" seems to imply an ordered progression through grief. That isn't at all what it is really like, of course. I can identify with some of the things labeled as stages, but there is no progression. And, for me at least, I jump all over the place and revisit many "places" I have already been.

Currently I'm experiencing something that I can only explain as panic attacks. Most of the time there isn't anything specific I'm tense about. I'll just be going about my business and my heart will begin to race, my stomach will turn over like people describe as butterflies and I'll feel something like extreme tension that comes from stress. It is like nerves leading up to public speaking multiplied by 1000. Sometimes it just comes on out of nowhere, but when that is happening I can be sure that uncomfortable work situations or other interactions (with family or otherwise) will set it off. I felt this way for about 2 weeks last month and then it went away. Now it is back. And it sucks. Big time.

Brave and beautiful

2008-05-23T09:35:00.002-06:00

I ran across this via Will Lacey's blog. For the most part I have dropped out of the world of keeping up with other cancer kids. It isn't that I don't care or aren't emotionally involved with these other kids' journeys, it is just too much for me. There are a few that I keep up with for various reasons and Will's is one of those. Will's Dad linked to a new site, Mashed Potatoes For Breakfast, for a little boy whose journey he follows. The new site is a collaboration between the cancer family and a professional photographer. This is from the about section of the site

Mashed Potatos for Breakfast chronicles Max Mikulak's fight for his life against relapsed neuroblastoma. A photojournalism collaboration between professional photographer Deb Schwedhelm and Max's parents, our goal with this project is to raise awareness and ultimately drive action to make sure that Max and other children like him win their fight and live to see adulthood.

Will's Dad says this

Because the most intense moments in this journey are not times where you stop and say "hold on honey while I go get the camera". Because of this, those moments are rarely captured, seen, or shared so by Deb's participation you will be privy to a lot of moments that otherwise don't see the light of day.

We have a few pictures from the bad times or otherwise powerful times, but not many. Most of those exist out of luck or being very intentional about capturing those moments. I think photo records of these journeys tend to be very similar to the blogs and journals that parents keep. You might think we are conveying the truth and the gory details, but most of the really hard physical and emotional stuff gets held back. There are a thousand reasons for this. Sometimes it is too painful to recount the details. Sometimes we can't help but protect the reader. And sometimes we just have to convey the hopeful aspects of this painful journey. Something that gets lost is the beauty and the bravery of these sick kids. People who aren't in the trenches can't help but find these children inspiring, but the reality is that they don't see or know half of it.

I have seen a few other photo projects. Some of them have documented the battle and one was an amazingly brave documentation of the end of life. I haven't seen an attempt at a sustained photo project and I think it is a great project and one that might not only raise awareness, but also perhaps raise the veil a bit more so that people can get more of a glimpse not only of the beauty and bravery of Max, but of the beauty and bravery of all of our cancer kids.

I'm not sure that I will be able to follow along the journey, but it seems a very promising project and a journey worth following.

Five years

2008-04-01T08:40:00.001-06:00

Your son has cancer. April Fools!

Granted, it would have been a tremendously cruel joke, but if only...

Threnody

2008-03-07T11:55:00.000-07:00

English
Noun
threnody (plural threnodies)
Etymology: Greek thrēnōidia, from thrēnos dirge + aeidein to sing
: a song of lamentation for the dead

I have always liked Emerson. I don't always understand his writing and oftentimes I need a bit of academic help in digging out the details of the meaning, but I often turn back to reading Emerson. Sometime in the last year or so of Nathan's life I ran across the Emerson poem Threnody. Threnody is very much a lament and attempt to dig out some type of meaning in the death of Emerson's five year-old son, Waldo. I've read it several times now. It is a long piece and the language is a bit tough for me. Sometimes I don't make it all the way through in one reading. On some attempts I don't make it through because of emotions. On other attempts I think too hard about the meaning and my head begins to hurt. Over time and reading I was able to discern and take away an understanding of the various parts of the poem, although I could never have articulated them until reading something from a paper I found online.

I wish it was as easy as lifting the conclusions of this great thinker whom I admire and making them my own, but it isn't. There is no short cut through grief. As I am reminded in a new song by a favorite band of mine, "The best way out of hell is through the other side". Emerson seems to have made it through his hell and found a type of peace with his loss. In the end, I think it is likely the only type of peace one can make with the loss of a child. It can't be overcome, it has to be made a part of yourself that you can tolerate and live with. It isn't an easy process and that is what I like about the poem. I get a sense of the Emerson's journey with grief. It isn't my journey. Everyone's is obviously different, but the similarities are clear and since I don't have the tools to articulate my journey, I point myself and anyone that reads this to his.

The text of Threnody.

Excerpts taken from "Emerson: Death and Growth", Stephen Barnes (Southern Illinois University, Carbondale).

To conclude, then, allow me to offer a brief reading of Emerson’s poem "Threnody," written as a lamentation on Waldo’s death, which I believe encapsulates many, if not all, of the above themes. The first part of the poem is a questioning. It is the work of Power seeking to understand. Emerson cries out to Nature to heal his son as it heals itself through the ongoing process of seasonal renewal. But he knows this cannot be: "Nature, who lost, cannot remake him," and he writes that, "Fate let him fall."

Emerson continues, bemoaning that he misses the sights and sounds of Waldo’s presence. The loss, however, is always the fault of the world: "Perchance not he but Nature ailed, / The world and not the infant failed." Perhaps Waldo’s genius was too much for the world; perhaps he "Brought the old order into doubt / His beauty once their beauty tried."

It may well be the case that Waldo’s Power was too great. He questioned the Form of the world through his beauty, energy, and activity. He, for Emerson, caused the balance between Form and Power to waiver. The battle, the chase threatened to come to an end. Unable to bear this possible end, the world caused Waldo’s end. In effect, he was simply too great to be supported by this mortal realm.

In the second half of the poem, the "deep Heart" answers Emerson. He is not to learn from past "tutors" but from the "joyful eye" of Waldo. The beauty of his son gives him fresh insight, a new life, in much the same way as the Christ of Scripture, "Mary’s Son, Boy Rabbi, Israel’s paragon."

Waldo, thus, has not truly left. He remains present in Emerson’s being; he is one with Emerson’s deep Heart. Furthermore, Death acted as a healer. Otherwise, Waldo’s beauty and genius would have been too much for the world, destroying all its limitations: "My servant Death, with solving rite, / Pours finite into infinite."

So despite the fact that the need for Nature’s limitations (such as his son’s disease) caused Waldo’s death, Emerson is told not to close himself off to the world: "Wilt though not ope thy heart to know / What rainbows teach, and sunsets show?"

We have no reason to despair because the world, or Nature, or Fate is "Not of adamant and gold" but is of warm, flowing, organic being. It changes and grows, "Built of furtherance and pursuing, / Not of spent deeds, but of doing."

In this way, the world and Emerson are always in process, regrowing, and recreating themselves. His suffering is thus not overcome, but rather folded into him, allowing Emerson to transcend the absurdity of his condition through the salvific powers of continuity with his past. He no longer strives to feel and forget – in other words, to overcome. Rather, he grows, embracing the horror of his loss as inseparable from his new life, in all of its wounded possibility.

Birthday

2008-01-22T08:59:00.001-07:00

Today is Julia's birthday. She turns six. She has been an emotional wreck for the last several days. I think that there are a lot of things contributing. She was sick and out of school (she needs school to keep her occupied and she loves it). Then Monday was a school holiday. I try not to project how Nathan's absence impacts my day-to-day well-being on Julia, but I also think that she is seriously struggling to comprehend what her birthday celebration means to her without her brother.

She has been a lot more vocal about Nathan and expressing how she misses him and wishes he had not died. Most of the time she is pretty matter-of-fact about it all. I think that part of it is that she hasn't had her grief group in several weeks, so she hasn't had that outlet. I really think part of it is also tied to her birthday.

I pray that she is able to feel his presence at some point today, and know that her brother loves her and is celebrating on her day.

A grieving sister's prayer request

2008-01-20T13:46:00.000-07:00

Julia gets a children's bulletin every Sunday at church. It has a place to draw a picture, some games and activities, and a place to write a prayer request. The last two weeks she has written essentially the same "request"/prayer. This week's looked like this:

I wish my bruur did not did.

First Baldrick's post of 2008

2008-01-19T13:19:00.000-07:00

Susan and I were talking about St. Baldrick's at lunch and it occurred to me that a group of friends had already started up a team to participate. This is a good organization and they raise money in a very fun way. There are all kids of events. I've attended two and both were at Irish pubs. That seems the way to go.

This is my first heads-up. I'll probably post more as the dates get close.

Nathan's Network is a group of friends formed by Baldrick's veteran Matt D. The team is geographically diverse. Matt participates at Fado in Chicago. Nathan attended there one year and took a few swipes at Matt's hair with the clippers. It looks like Matt will have a good group there with him this year. Some of the team will likely be shaved somewhere around Phoenix, Seattle, and maybe other locales.

There are currently two other (outside of Nathan's Network) shavees signed up in honor of Nathan. I don't know either of them. Susan has had some correspondence with one of them. You can find all shavees honoring Nathan here.

Some regular readers here are annual contributors to Baldrick's and have already donated. Thanks to everyone participating either through shaving/cutting or making contributions. Susan and I are moved by your generosity, and even more by your desire to honor and remember Nathan.

My sick girl

2008-01-17T20:14:00.000-07:00

Julia has been sick for a few days. In the past, Susan has had a difficult time emotionally when either of the girls gets sick. I understand that, but it isn't something that has hit me. Julia was feeling better today but still a little sick and Susan took her out and about on some errands she needed to run. I wasn't there. Susan may or may not blog in detail, but Julia got excited about something in the grocery store and fainted. Since then she has felt a lot better and the doctor doesn't think it was anything at all.

I was having a really hard time seeing her sick and curled up on the couch before she had fainted. I'm glad she is feeling better and playing and not acting sick. I'm glad for her, and for me too.

Difficult

2008-01-11T08:28:00.000-07:00

Nothing specific today to post about, other than to just comment how it has been a pretty rough time as far as news for other NB families that we know. A wonderful little girl from a truly loving and giving family that we met in New York has relapsed. A family whose little boy has chemo-resistant NB has just found out that their 11 week old daughter may also have neuroblastoma. It is uncommon, but not unheard of for more than one child to have NB.

Every time I hear this type of news it makes me sick to contemplate the suffering of so many beautiful children and their families.

Have a new year

2008-01-02T07:28:00.000-07:00

Susan mentioned in a post on How can I keep from singing? about someone on a grief support message board replacing "Happy New Year" with "Have a New Year". We had a good Christmas. We spent it with family. In the end, I'm really glad we traveled. I think that it would have been very difficult to feel in the spirit leading up to Christmas day here in our house. Our house where Nathan should be. Not that he shouldn't have been with us on the road, but I think it would have been harder here. Especially just the four of us before family would have arrived. As it turned out, it was hard but there were distractions and there were genuinely good times with family and friends.

Julia is in a phase where she asks the same question repeatedly. She will ask, then a few hours later ask again as if she never asked before. It is a lovely phase. Over the last few days she has repeatedly asked why the year changing is a big holiday. I had to explain over and over that it is about optimism. That people celebrate the good of the past year, but mostly they celebrate in an attempt to be positive and to usher in good tidings for the new year. It is a new start and people celebrate in order to be hopeful for good things to come. That is what I tell her. I "get" hope and the need for it. I've had hope. I've lost hope. I keep getting it back and losing it again. Those days where it is lost are very black indeed. This new year is obviously much more complicated for me than most.

It is no longer the year in which Nathan died. It is so hard to move farther away from that. I can't explain how horrifying it was to watch Nathan waste away. To know he was actively dieing. That his body was betraying him. To see him in such terrible pain. To fail in so many ways at protecting him from the worst of it all. To watch the beating in his chest become more and more irregular and finally stop. To see his chest rise, fall, and not rise again. To make "final arrangements". To prepare his obituary. To grieve. And to continue grieving and all of the messiness that comes with it. 2007 wasn't such a good year, but it is so bittersweet to see it gone. On one hand, fuck 2007. Good riddance. On the other? On the other it is so very sad to go on without Nathan. And I'm scared. I'm scared that I'll just lose more and more of him as the days go on. I read recently about the expectations that grief "gets better" with time, but that some experts in the field of parental grief suggest that over the course of quite a long period parental grief can actually get worse with time. Parental grief, to a large extent is the loss of hope for the future as embodied in our children. In this context, finding hope in the new year to celebrate is pretty damn hard.

I do have some hope. But it is too weighed down with grief and fear to celebrate.

I also keep thinking about a dear friend of mine spending his last Christmas and New Year with his dieing father. He has no idea how much I think about him. I've spent the holiday season knowing it was the last with someone I love. It sounds like he has been able to spend some good time with his dad and to make some good memories. I suspect the new year looks pretty bleak and I pray that he can find some hope. I love you, Jim.

I didn't intend for this post to be quite so bleak or to include such painful detail. I had a strong urge to scrub it for you. If anything throughout our blogging and journaling about Nathan, we have tended to scrub the details and make them sunnier than they really are. Susan and I both feel the need to protect others from the horrors. I suppose that is natural. All of this is so hard to explain. How do I explain that yes, I feel this bad and it is this hard, but that it has been this bad and this hard for so long that it seems normal? And that while it has been this bad and this hard for so long and that I expect it to remain so for awhile longer, that I still function and have hope that it will get easier and then finally better? I can't explain it. You either understand it because you have been there, or you don't. Part of why I do this occasional blogging is to perhaps give the people I love some understanding and some sense of sharing this with me. Ultimately though, I hope you never really "get" it.

Giving thanks and being blessed

2007-11-27T14:29:00.000-07:00

Thanksgiving has come and gone. We traveled and had a nice trip. The holiday was spent with family and we had a nice time, but when I tried to reflect on what I had to be thankful for, it was very difficult to truly feel thankful. It wasn't hard to come up with something. I'm clearly always thankful for Susan and my beautiful little girls. Those things sprang easily to my mind, but in my heart I couldn't really feel thankful. The gaping hole there swallowed up any real emotion. It wasn't a sad holiday by any means, which I suppose is something to be thankful for, but it wasn't a great one either.

In contrast to Thanksgiving, where I tried to be and feel thankful, this past Sunday morning I had the first genuine moment of quiet contentment that I can remember in a long, long time. Susan had left for church to warm up with the choir. Julia was dressed and ready for church early and sitting in the dining room drawing pictures and singing to herself. I sat in the kitchen with the paper and a cup of coffee with Lauren sitting happily in her high chair eating breakfast. Both girls were being loving and I felt very distinctly blessed to be having a quiet morning with my daughters. "Blessed" was the word that sprang to my mind sitting there to describe the warm feeling I had. I almost immediately felt the pang of loss and of guilt for feeling blessed under the circumstances. I know that is irrational. Wallowing in the pain of loss in no way honors Nathan or is what keeps his memory alive. I know that, but it can be very hard to accept. That good and warm feeling, however brief, was wonderful. I hope to have more of them.

Later Sunday morning at church our pastor was preaching on the beatitudes from the Sermon on the Plain in Luke, "Blessed are...". I listened carefully given the word "blessed" seemed to be working it's way into my day. He talked about the Greek word that "blessed" was translated from and dug deeper into the Aramaic word that Jesus would likely have spoken. I can't recall the exact translation he gave, but it was something like "on the road to". On Thursday I couldn't make myself really feel thankful, but for a brief, warm moment Sunday morning perhaps I found myself on the right road.

Since I have been so quiet on A Night in the Box and Cancer Dad, I'm cheating and cross-posting this to both.

Graveyard

2007-11-12T09:44:00.000-07:00

Nathan's ashes have been interred. So many decisions to make through all of this. So many of them linger in terms of wondering if the right thing was done, or said, etc. This one feels right. It's odd actually to have done something through all of this that feels right. Almost everything feels so wrong. Susan put together a really nice post with some pictures.

Here are the lyrics to a Loudon Wainwright III song. His music really resonates with me. I've known this song for a long time, and I've always been struck by its simple approach to tackling such a complex emotional thing as mortality. There is also imagery here that really strikes home. He writes of playing in a graveyard as a boy and of the wind beneath the graveyard trees. I remember playing in and near the small country cemetery near the church back where I grew up. It pleases me that, while much bigger, the cemetery where Nathan has been laid to rest has the same type of old cemetery feel...with the wind blowing beneath big trees.

Graveyard
Loudon Wainwright III

I go to the graveyard
Where we all must go
Among the dead and buried there
Just so I will know
What it's like beneath those trees
Listening to that wind

I go to the graveyard
ANd I'll be back again

I played in the graveyard
When I was just a boy
I'd run among the headstones
Myself I would enjoy
But I was young and hardly knew
What would happen then

I played in the graveyard
And I'll be back again

I walk through the graveyard
I read the headstones
So many dead and buried there
Each one all alone
An old man and an infant
And a little child of ten

I walk through the graveyard
I'll be back again

My father's in the graveyard
My dear mother too
I visit them with flowers
What else can I do?
I go to the graveyard
To remember them

I'm an orphan in the graveyard
And I'll be back again

I go to the graveyard
Where we all must go

Fall

2007-10-25T08:37:00.000-06:00

Haven't been able to find words. So...

2000

2002

2007

Group grief

2007-09-19T08:27:00.001-06:00

We have attended two group meetings facilitated by counselor for parents who have recently lost their children. I know that I have written here before about how torn I always was on how closely to read other children's stories or how close I wanted to be to other parents through forums and such. I was very skeptical about how much I might get out of these group sessions versus how painful they might be.

After two meetings, I'm pleasantly surprised that I get something out of them. I don't hold hope that they will help in any great way to heal this wound or to hasten through the worst of the grieving process. I certainly wouldn't say it was a fun way to spend 1.5 hours. I have, so far, gotten something positive out of just talking to people with this awful shared experience. I have spoken and chatted with friends about what my days are like and the challenges I face to make it through them. When I have, I have received love. I have received sympathy. My friends have given me what they can and should as friends. But they haven't nodded their head in understanding. They haven't been able to say, "I feel or do the same thing". It is an odd thing. Intellectually I know I'm not the only one feeling this way or struggling in that way. Intellectually I don't think that I need confirmation of that. But when I sit with these other grieving parents and see their heads nod when I talk about struggling through a workday, or I can relate to the things they say, then something clicks. I can't say that thing that clicks is something that feels good, but there is an odd sort of comfort that it provides.

More everyday things that hurt

2007-09-17T09:46:00.000-06:00

I do the bulk of our laundry. I let it pile up throughout the week and typically just do mass laundry on Sunday afternoon. Over the weeks since Nathan died the number of items of his (clothes that had gotten stuck under a bed or pile of junk, or sheets/towels/etc) had dwindled. I think that yesterday was the first laundry day that I didn't process a single item that I identified with Nathan.

All the time

2007-09-17T09:30:00.000-06:00

Julia is in Kindergarten now. One of the consequences of this is that she has graduated from the nursery at church to attending "big church" with me. We have now done big church together two or three times and she does great. The hour is a long time to sit quietly but she enjoys parts of it. I can tell her feelings are mixed on it.

As we were driving to church yesterday she talked about how she liked going to big church with me, but that some things were more fun in the nursery. I explained that I understood that but told her how much I enjoyed having her with me. I explained how it was a time with her that I really cherished. And I explained to her how I had loved spending that time with Nathan and that during church I felt sad and missed him a lot and how having her there helped me feel better. She said, "I miss Nathan a lot all of the time". It wasn't the voice of a little girl trying to one-up me by saying she missed him "all of the time" when I was talking about missing him during a specific event. Julia is coping right now by avoidance. It isn't that she won't talk about Nathan with us. She frequently will make comments to me about him, but she won't talk about it long. For the most part she is outwardly doing well when she is busy with school, church, swimming lessons, her new dance lessons, and etc. Her sweet little voice and the message it carried underneath as she said, "I miss Nathan a lot all of the time" really hit me. It is impossible to explain really, but I feel Nathan's loss every minute of every day. It doesn't really matter what I'm doing. It doesn't really matter if I'm avoiding it or actively wrestling with it. It is just always there. I could be projecting my grieving onto Julia, but I don't think so. I think she was expressing this type of constant ache as best she could.

I'm sure it reads like I read too deeply into one simple sentence from a five year old, but I don't think so. You parents out there know that you can tell from tone and delivery when your kid is trying to just outdo you rather than making a simple sincere statement.

Everyday things that hurt

2007-08-23T09:06:00.000-06:00

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

2007-08-20T10:43:00.000-06:00

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

2007-08-14T08:04:00.001-06:00

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

2007-08-13T12:17:00.000-06:00

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

2007-07-21T17:27:00.001-06:00

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

2007-07-21T16:36:00.000-06:00

To-Do List:

Explain to seven year old son that he is dying. (The books and the hospice people say he already knows.)
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

2007-07-15T09:43:00.001-06:00

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

2007-07-15T09:35:00.000-06:00

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?

2007-07-14T07:42:00.000-06:00

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

2007-06-24T08:44:00.001-06:00

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?

2007-06-11T13:51:00.000-06:00

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

2007-06-04T22:10:00.000-06:00

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

2007-05-22T08:40:00.000-06:00

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

2007-05-03T09:16:00.000-06:00

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

2007-04-29T11:56:00.000-06:00

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

2007-04-18T09:02:00.001-06:00

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

2007-03-30T07:33:00.000-06:00

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

2007-03-23T08:25:00.000-06:00

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

2007-03-12T12:18:00.000-06:00

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

2007-03-08T14:08:00.000-07:00

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

2007-03-07T14:13:00.000-07:00

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

2007-03-01T08:49:00.000-07:00

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

2007-02-13T20:09:00.000-07:00

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

2007-02-08T07:07:00.000-07:00

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

2007-01-25T09:59:00.000-07:00

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

2007-01-19T08:48:00.000-07:00

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

2007-01-16T09:52:00.000-07:00

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

2006-12-18T06:32:00.000-07:00

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

2006-12-16T19:58:00.000-07:00

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

2006-12-15T12:18:00.000-07:00

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

2006-12-14T20:09:00.000-07:00

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?

2006-12-05T20:28:00.000-07:00

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?

2006-12-05T20:21:00.000-07:00

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

2006-12-02T20:53:00.000-07:00

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.

Nightingale

2006-11-29T06:30:00.000-07:00

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

2006-11-28T20:50:00.000-07:00

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)

2006-11-26T19:53:00.000-07:00

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

2006-11-24T20:28:00.000-07:00

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

2006-11-24T20:24:00.000-07:00

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

2006-11-21T06:19:00.000-07:00

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

2006-11-20T06:33:00.000-07:00

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

2006-11-17T21:22:00.000-07:00

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

2006-11-15T20:10:00.000-07:00

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

2006-11-14T06:28:00.000-07:00

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

2006-11-12T18:00:00.000-07:00

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

2006-11-11T18:45:00.000-07:00

This is the protocol Nathan is currently on.

200s

2006-11-11T07:53:00.000-07:00

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?

Control

2006-11-11T07:46:00.000-07:00

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.

A different language

2006-10-30T19:56:00.000-07:00

I got in the elevator here at Ronald McDonald House NYC and saw a woman I recognized from around the house but had never really chatted with. I casually said, "Hi. How are you?". She smiled and said, "We're going home today". No need to say more.

Ball o' nerves

2006-10-20T10:56:00.000-06:00

I've been neglecting Cancer Dad. That means, I think, to some degree that I've been neglecting my need to deal with this well. I've written a couple of posts that I threw out. It was good for me to write them, but nothing to share. Maybe I'll post one of them someday. Probably not.

Today I am sick. Scans. I have told others and myself that I'm not too worried about these. That it would seem unlikely that the cancer would have grown through this first round of the new treatment. That I don't expect them to be better, but that I don't expect them to be worse either.

And I don't. I don't expect them to be worse. But I am afraid that they will be. Very afraid.

Long distance?

2006-10-04T19:45:00.000-06:00

Sometimes it seems like a burden to have to travel all the way to NYC for Nathan's treatment. In the last two days I have met kids in the Ronald McDonald House from London, South Africa, and Greece. At an event for parents tonight I met two women from different Caribbean islands.

There are a lot of reasons to be happy to live in America. Top quality medical care is one of them. Sometimes it boggles my mind that the quality of care and treatment options can vary so much from facility to facility and city to city. It is when I'm here that I am thankful that at least I can get world class care in my country.

Blue Manhattan

2006-10-03T09:21:00.000-06:00

In NYC. It is good that we are all here as a family. It is bad that we all have to be here. So much of all of this has a "flip side". Susan is out with the kids. I'm putting in some hours working from the RMH. Don't have much time or ability to organize my thoughts for a good post. So, I leave you with a post that might be more like you would find at A Night in the Box.

Ryan Adams - My blue Manhattan

She's angry like a child but how sweet
Fire and rain on the street
It's you against me most days
It's me against you doll
Ah, the snow's coming down
On the cars in midtown
Stone cold in sheets
With you all over me
Ain't that sweet my little gal
Ain't that sweet my little gal

My blue Manhattan
She cusses with her sailor's mouth
And fire and rain on the streets
It's you against me most days
It's me against you doll
Making snow angels
In the gravel and the dirt
Crawling like a spider
And I'm somewhere inside her
Too hurt to move
Too hurt to move

Deja Vu - Julia knows too much

2006-09-22T09:39:00.000-06:00

Back in June I posted about Julia's concerns for Nathan. When she and I were driving home after dropping the rest of the family at the airport to head to NY to get the scans that would ultimately show his current "relapse", she dropped the "Sometimes kids die" bomb seemingly out of the blue. As noted in that post, when I asked her why she was thinking about that, she totally punted and said she "didn't know".

Well, as we were driving back from Denver yesterday after having dropped off the rest of the family to head to NY for Nathan's treatment, Julia says to me, "Sometimes kids die". Again I asked her why she was thinking about that. She gave me some story about cars sometimes hitting trees and hurting people. It is so hard to know how deep to go with the kids about serious issues. I tend to take their lead and go as far as they want/need to go. I think it is pretty clear that she is piecing it all together, but that she doesn't quite want to take the train of thought/conversation to its logical conclusion.

She has shown some other signs that could be coincidence, but may not be, along these lines. Apparently when we were away on our last trip she talked a lot about missing Lauren, but little or none about Nathan. Earlier this week she was listing members of our family and omitted Nathan (This one could easily be a coincidence. She doesn't always keep lists and things like that organized in her mind.).

I suppose it goes without saying that I have a lot of fear and concern about Julia. I worry about how our family's focus on Nathan impacts her emotionally and I worry about how it will impact her if we lose Nathan. So we just keep doing the best we can and will continue to do so. Sometimes our best isn't good enough. Trust me on that one. Sometimes our best isn't good enough.

Phase I

2006-09-21T23:07:00.000-06:00

The last couple of days have been hectic. Susan, Nathan, and Lauren were off to NYC this morning after getting the go ahead to come yesterday. While it was had getting everything ready and the upcoming week+ is likely going to be hard on everyone, especially Susan, Nathan, and Lauren, it is really a good thing to be getting started on something.

The treatment Nathan is starting next week in NY is a Phase I clinical trial. The drugs being used have been given in clinical trials before, but not together. I haven't found any description or information of the trial online.

From documentation on the FDA's web site.

Phase I Clinical Trials

The purpose of a Phase I clinical trial is to find the best way to give a new treatment and how much of it can be given safely. In a Phase I study a new treatment is given to a small number of patients. For a new drug, the study starts by giving a very low dose of the drug, then the dose is slowly increased as new patients enter the trial. The dose can be increased by giving more at one time or by giving the same dose more often. Physicians watch patients carefully for any harmful side effects. Although the research treatment has been well tested in laboratory and animal studies, the side effects in patients cannot be completely known ahead of time. Phase I study effects may involve significant risks for this reason. They are offered only to patients whose cancer cannot be helped by other known treatments. Phase I treatments may or may not produce anti-cancer effects, but some patients have been helped by these treatments. Once the best dose is chosen, the drug is studied for its ability to shrink tumors in Phase II trials.

So, what is this "neuroblastoma" thing anyway?

2006-09-19T08:53:00.000-06:00

My Google News RSS feed on neuroblastoma picked up a pretty quick but informative read on the basics of neuroblastoma. The piece comes from Metro West Daily News, which appears to be a section of the Boston Herald, and is in the format of a doctor's response to a reader's question. It seems a pretty well-written summary of NB, with little information that I disagree with or take exception to (after you've done this NB parent thing for awhile, you even start to disagree with doctors and common assertions about the disease based on your own experience and those of others you know).

So, you can refresh your neuroblastoma knowledge with this primer from Dr. Jeff Hersh.

Adjusting

2006-09-18T08:59:00.000-06:00

If you would have asked me who would have the most difficult time adjusting to being back at home as a family, just knowing our various personalities and coping mechanisms, I would have said Julia and Susan in that order. As it turns out, I think the reality was (1) Nathan and (2) Luke. Julia was great all weekend. Sure, she had a few meltdowns but overall she was fun, well-behaved, and just a real joy to be around. Nathan, on the other hand, was an obnoxious little brat most of the weekend. He was selfish, disobedient, openly defiant, and very, very whiny. I think I did okay on Saturday, the day of our return, at being patient and calm with everyone. Yesterday I was feeling fine and pretty well adjusted through church. Susan was a bit worried about a day at home with the kids, but I was looking forward to that so she ran out to take care of errands that had built up while we were gone and I settled in with the kids. By 4:00 in the afternoon I was pretty much done being a parent. I asked Susan to switch from our usual seats at the dinner table because I really didn't even want to sit by Nathan. It seemed like all I did all day up until the afternoon was patiently do things for Nathan and it was never enough.

Things have been hard on all of us. Jules has been beautiful, but I'm sure there is an explosion of emotion waiting just under the surface for her too. Nathan, I think, had a hard time adjusting to not being the center of everything like he is in New York. I was tired and Nathan kept dashing my hopes of a fun family day by acting out his emotional distress.

Even though it doesn't sound like it, I'm happy to be at home with everyone and had some really nice times this weekend. It has been hard for me to just jump back into it all though.

I wonder who will have the shortest fuse tonight? The kids after a normal weekday school schedule? Or me after banging my head against the wall trying to focus on work? Oh wait, I get to escape right after work to run off some of my anxiety on the basketball court. I sure hope the evening goes okay for Susan, but I'm sure glad I'm escaping the house and everyone in it for a bit.

If you are angry

2006-09-14T06:19:00.000-06:00

Well, there are a lot more interesting comments being dropped in Nathan's CaringBridge guestbook. People are angry and outraged, and that is fine and reasonable. I know I have much less readership than Nathan's journal, but I'm not so comfortable addressing this issue there. I guess I feel like in some ways being angry for us is one way for people to cope, and I don't necessarily want to take that away from them.

Areas people are upset about are the (A) waiting/disorganization/perceived lack of compassion from the hospital staff in a couple of instances this week, (B) the lack of answers available to our questions about possible effectiveness and side effects of the new treatment we want to get Nathan on, and (C) the fact that we have to wait to begin treatment until the drug company and hospital can dot all of the Is and cross all of the Ts.

(A) Yes the doctors here at MSKCC don't always communicate the best. Yes sometimes you wait forever and can get lost in the shuffle of things. Yes, I think they could improve. This is not something I'm up in arms about. The flip side is that the doctors and staff are very caring. They may not provide the caring familial feeling we get in our small clinic at home, but they do care about Nathan. Even though he isn't there often, they always remember him and his interests and make him feel good. He has great bonds with some of the nursing staff and the volunteers and Child Life people in the playroom are great. It is sometimes a little mind boggling that what I feel is *the* world-class facility in terms of neuroblastoma treatment can be at times so disorganized. I think one of the root causes though is that they squeeze themselves so much to see as many kids that require intensive therapy and care as they do. How can I argue about that. They see as much volume as they can and then some and they strive everyday to conquer neuroblastoma. To some extend they are jaded and a little harsh, but I'm not going to hold it against them. Yes there are different types of trials and other facilities with NB teams and it is quite possible that the final and best breakthroughs will come from somewhere else. I'm not someone that thinks if you don't take your NB kid to MSKCC you are doing your kid and family a disservice, but I'm glad to be here and think that continuity in care and comfort with a facility is important to Nathan and our family at this point. There may be problems, but I'm an MSKCC fan. I'll take him somewhere else when I think we need a lighter and less aggressive approach for Nathan or when we run out of things at MSKCC, but not before.

(B) When Susan talked about not getting answers from the doctor and getting an "I don't know" response, she was talking about specific questions about side effects and expected response. We could have gotten much better and more voluntary answers about timing, logistics, travel requirements, and etc, but the doctor really didn't know the answers to the questions. Nathan will be the first human patient to receive this combination of drugs. They really don't know if he will have side effects that could keep him out of school. They really don't know and don't feel it is appropriate to conjecture what type of response is possible. They think this is possibly a good therapy, or they wouldn't be investigating and that is about all we can know or hope for. We are out of the world of any type of protocol with any type of track record. They think this might ease Nathan's disease burden and give him time, but there is no prognosis at this point. There is no cure. If you are angry at "I don't know", which you should be and have every right to be, don't direct it at this protocol or this doctor. We are talking about a disease where when diagnosed at advanced stages, which a high percentage of children like Nathan are, sees roughly 40% of those Stage IV kids make it five years. Every current protocol that is not a clinical trial is the protocol developed by a trial that just closed. Kids diagnosed now get different treatment and supporting drugs than Nathan did when he started three years ago. The doctors don't know what causes the disease or how to effectively attack it. Kids are stuck for the most part with trickle down therapies that have been effective in adult cancers. But any doctor worth anything will tell you that kids aren't little adults. Their cancers are different and if there is something to be sad and angry about it is that so few hospitals and organizations are out there specifically trying to find new therapies targeted at kids. So, if you are angry/outraged/shocked by Nathan's story, support organizations that solely focus on finding new therapies for childhood cancers.

(C) This is just crazy. I know that there are real economic issues involved and that from a business standpoint the hospital and drug company must come to legal terms for release of this drug for use in this clinical trial, but to have to wait on legal negotiation (which is what I assume we are waiting on based on comments from the doctor) is terrible. This is a flaw in the system and I could probably ramble on for pages and pages about what I think the root cause is, but it isn' t worth any more time than I already can't help but stress about it. It is out of our hands and I have enough to be angry about without getting even more worked up over this.

A new attitude

2006-09-09T13:56:00.000-06:00

There are some really interesting mixed reactions to our latest news. This can be seen at Nathan's guestbook. Essentially, there is no change in Nathan's disease since the relapse was found in June. Since then he has had two rounds of chemo, one of which we knew probably wasn't effective. I find the reactions pretty interesting. On one hand, I think there are some people that are probably "just getting it". This is really the first example of treatment that didn't knock the disease back. Also, I think perhaps writing that the doctor seriously told us that doing nothing was an option was a bit of a reality hit for some people. My emotions are clearly conflicted on this. It hit me a bit hard in the moment of hearing that the disease was basically the same, even though going in we knew that the point of the big shot of chemo we did was to keep the disease from progressing so that we had at least some treatment options available. So, was the news bad or good? I think for the people that haven't quite realized or let themselves believe that this disease will take Nathan's life, it was pretty bad. In the sense that we do have at least a couple of options on the table because he hadn't progressed, it was good. By any reasonable standard though, I suppose the news was bad. The cancer is there and it is "impressive". That just equals bad. It always will. It can be nothing but bad. I'm trying to have a new and improved attitude though. I think I'll feel better when we know for sure what the schedule to start a new treatment will be. Unfortunately that depends on some red tape around a clinical trial. Once it is all solid, I'll try on my new attitude. That is the one where I'm grateful to be able to do something that may prolong our time with Nathan.

The constant struggle

2006-09-01T07:42:00.000-06:00

Today, like many days, I can't help but ponder one of the toughest things about all of this for me. I think there is a bit of a paradox buried here, and like any paradox it is a bit difficult to wrap my head around. I have always said that the most important things to me were my relationships with family and friends. I'm pretty sure I always meant and felt that, but I clearly feel that so much more strongly now. These relationships and the very lives of the people that I have them with can be fleeting. That is just one of those very harsh realities of life. So I am acutely aware of how important people and my relationships are to me, but the area of my life that seems to be impacted the most adversely is exactly my relationships with those closest to me.

Every day everyone has to work at these things. Working on them with the weight of the stress, sadness, and grief over the loss of how I expected my life as a husband and father to be is very difficult.

Wouldn't you?

2006-08-31T09:18:00.000-06:00

So, if you left a voicemail with your HR rep explaining that you were going to be exhausting your leave to take care of a sick child and that you needed to know what your options were regarding a) going negative in annual leave or b) requesting leave without pay under family leave, wouldn't you expect to hear back pretty quickly?

Now, I'm being really impatient here. I left the voicemail early afternoonish yesterday, which is late afternoon where this HR rep is located. But, that also means it is late morning her time now and I haven't heard a peep back. Seriously, I would at least expect an, "I don't have any answers yet but I'm looking into this and will be back to you as soon as I can?". And given the nature of the request, I would expect that to come quickly.

Really though, I suppose it is only the matter of a few working hours. Perhaps I've become a slave to our instant communication age.

I'm just cranky about other shit this morning and taking it out on my HR rep. But hey, if you can't beat up on your HR rep when you are having a shitty morning...

Back to School

2006-08-29T20:14:00.000-06:00

My boy is going to school tomorrow. "All day" school. First grade. They have been in session for a couple of weeks. Nathan's immune system hasn't been up to snuff for being out of the house much, let alone sharing a small space with a bunch of snot-nosed kids. He has been getting tutored at home, but we want more than the learning for him. We want him to experience school and make friends. He has a window of a couple of days that he can go while his counts are up and before we head to New York for tests and maybe more treatment. There is a really high likelihood that the next treatment he gets will knock his immune system down again for awhile where he can't be in school, so I'm really happy that he gets to go to school tomorrow. Really. I feel happy about it. It is nice to feel good, even if it is only for a brief moment.

As I closed the door of their bedroom tonight after going in to tell them to stop talking to each other and go to sleep, I heard Nathan say quietly, "Julia, I'm going to have fun tomorrow". And yes, I'm teary-eyed as I type that.

My boy is going to have fun tomorrow.

Distraction

2006-08-21T09:40:00.000-06:00

I'm struggling this morning. I'm trying so desperately hard to focus on work I'm behind on and in serious crunch time with. My mind keeps wandering. Today I can't help wonder if I'm doing enough for Nathan. Am I providing him with the life he deserves in the likely short life he will lead? That is the question running through my head, eroding my peace of mind and leaving me feeling more selfish than anything. You see, I don't think I'm worried about Nathan as much as I am for myself on this one. What difference does Nathan know? No, what I really scared of is that when he is gone that I won't be able to be satisfied that I did enough or provided enough for him.

I haven't posted much here lately. Probably because I've been spending a lot of time feeling sad, selfish, angry, lost...exactly all of the things I initially created this blog to vent about.

Mark my words...

2006-08-21T07:49:00.000-06:00

For obvious reasons I'm a big fan of any organization that focuses on awareness of and finding cures for pediatric cancers. Coaches Curing Kids' Cancer combines these noble efforts with sports, another thing I'm a big fan of.

For those ESPN College GameDay fans, former college football coach and current analyst Lee Corso was just named the organizations National Spokesman. Good for Corso. Good for the organization to have such a recongnizable (thing about the people involved in it and their target) spokesman.

I've seen glimpses into corporate press release writing and seen "quotes" sent to the person they would be attributed to for review before incorporation into a press release. This was obviously done with Corso for this release, and the author of the quote got Corso's signature "Mark my words..." into it. Nice touch.

“What a win-win,”’ said Corso. “Teams get to say thank you to their coaches while the money goes to new pediatric cancer treatments. Mark my words – Coaches Curing Kids’ Cancer is going to be huge.”

Link.

Bad news for the cancer dads

2006-08-11T08:38:00.000-06:00

Psychological Distress and the Impact of Social Support on Fathers and Mothers of Pediatric Cancer Patients: Long-Term Prospective Results -- Wijnberg-Williams et al. 31 (8): 785 -- Journal of Pediatric Psychology

I've just read the abstract. I'll have to get one of my many doctor friends (or librarian sister) to dig up an electronic copy of the paper.

Conclusions Dissatisfaction with support and negativeinteractions that fathers experienced significantly affectedtheir levels of psychological distress. No such effect was foundfor mothers.

I wonder if it delves at all into what coping mechanisms, or lack thereof, that causes fathers, in general, to have more impacted levels of psychological distress in the long term than mothers. Perhaps that is for a future study.

As if I needed another reason to love the 1985 Bears

2006-08-10T15:46:00.000-06:00

This is from today's Chicago Tribune.

Jim McMahon and many other members of the Bears' 1985 Super Bowl champions will convene in Lake Geneva, Wis., this weekend to participate in a charity golf event to raise money for the Neuroblastoma Kids Foundation.

200,000

2006-08-08T16:10:00.000-06:00

Nathan's CaringBridge site went over 200,000 visits sometime in the last couple of days. That blows my mind. Susan created the site 1,213[1] days ago. I know the traffic ebbs and flows depending on Nathan's status (I think we have been getting somewhere around 300 visits a day over this last week of chemo), but just for fun on average we have seen roughly 166 visits per day over a period of 3 years and 4 months.

Wow. Thanks for caring.

[1] I think it is fun that the quickest and simplest way for me to calculate the number of days was to query Oracle with
select sysdate - to_date('2003-04-13', 'yyyy-mm-dd') from dual ;

Vomit and Neuro-Toxicity

2006-08-06T20:34:00.000-06:00

I had planned a fairly light post about the casualness that a cancer kid and a cancer dad talk about things like vomit. That was when the day was going well and Nathan was playing on his hospital bed, laughing, and trying to eat something after just having thrown-up for the second or third time of the day. All was good (a cancer family has a different scale than most). I think I'll still go ahead with the lighter side. I wrote a fair amount about the other stuff on Nathan's journal. I don't really care to write about it again, but if you want the complete picture of the day, you should read the account over there too. Neuro-toxicity sucks.

Anyway...here is a fairly typical dad/son conversation during a round of chemo.

Setting: Mexican restaurant drivethrough. I've just been handed a bag with breakfast burrittos and am waiting for the person to run my credit card. Nathan throws up in one of the ever-present pink "throw up bins".

Nathan: Daddy. I threw up.
Me: Okay. I'll dump it after I pay and we can get out of the drive through. You still want your burritto?
Nathan: Yes.

Nathan opens the potato and bacon burrito to go at it with a fork.

Nathan: It has bacon! Its soft! I like the bacon. Are these mashed potatos or breakfast potatos?
Me: Breakfast potatos.
Nathan: Did I throw up once or twice last night?
Me: I think just once.
Nathan: It looked like ground beef and melted cheese.
Me: Yes. It did.

And with that, conversation dwindled off a bit as dad and son enjoyed their breakfast burrittos in the car on the way to the hospital for another day of chemo.

Words

2006-07-25T09:56:00.000-06:00

Here are a few words that have popped up frequently in conversations I've had lately. In some cases the context has been Nathan's disease and the pressures it puts on our family, in others the context has been music or other "normal" topics. I just find it somewhat interesting that they keep popping up. "bleak" and "forlorn" are words that have been used to describe music that I have recommended to people. I haven't been purposefully seeking bleak and forlorn music, but I must be drawn to in that direction in general.

bleak
1 : exposed and barren and often windswept
2 : COLD, RAW bleak November evening
3 : lacking in warmth, life, or kindliness : GRIM b : not hopeful or encouraging : DEPRESSING bleak outlook c : severely simple or austere

forlorn
1 : BEREFT, FORSAKEN forlorn of hope b : sad and lonely because of isolation or desertion : DESOLATE forlorn landscape
2 : being in poor condition : MISERABLE, WRETCHED forlorn tumbledown buildings
3 : nearly hopeless forlorn attempt

hope
intransitive verb
1 : to cherish a desire with anticipation hopes for a promotion
2 archaic : TRUST
transitive verb
1 : to desire with expectation of obtainment
2 : to expect with confidence : TRUST

fair
I couldn't quickly find a good definition of "fair" in the context it is used, which is often, "It isn't fair that you have to go through this". The closest thing I quickly found is in the synonym "just".
2 a (1) : acting or being in conformity with what is morally upright or good : RIGHTEOUS (2) : being what is merited : DESERVED just punishment b : legally correct : LAWFUL just title to an estate

Fair/just is an interesting one. Buried in the various definitions of fair and just is this concept of conformity with what is merited, or deserved. There are some things that no one could deserve. If something can't be deserved, then fairness is a concept that cannot be applied. No child deserves to be sick. No parent deserves to watch their child fight for his or her life or to be forced to make decisions based on weighing length versus quality of life. These things aren't fair because the concept of fairness cannot be applied to them. They aren't unfair either. They can't be.

Being a parent is an awesome and terrible responsibility. Dealing with this disease is not what I expected, but it is what I signed up for.

All definitions taken from www.webster.com.

Borrowing from Bob

2006-07-24T10:05:00.000-06:00

Things have been a bit slow here, and over at ANitB. It isn't so much that I don't have a lot to say or a lot on my mind, it is more that I either have too much swirling around to nail down something interesting or helpful to me to write, or I'm avoiding things when I can. I think over the last couple of weeks I've been using music as an outlet. I'm trying to learn to play it, and I'm listening to some new and interesting things. Today I have a particular verse of a Bob Dylan song stuck in my head. I've known the song for ages, but have been reintroduced to Buckets of Rain by Jeffrey Foucault and his collaboration with Redbird.

Life is sad
Life is a bust
All ya can do is do what you must.
You do what you must do and ya do it well,
I'll do it for you, honey baby,
Can't you tell?

Listen to Redbird's version here (5.05 MB via RapidShare).

Uncertainty

2006-07-12T22:29:00.000-06:00

Not knowing is not good. Or maybe it isn't. Maybe not knowing is okay if what you don't know is bad. What I don't know right now is if the one round of chemo Nathan has had since this bone marrow relapse has done any damn good. What I won't know for awhile is if the second round he will hopefully start next week (Send good thoughts on this. Timing is important when hitting this with multiple rounds of chemo.) will do any good. I don't know what is next in terms of treatment, therapy, travel, etc. I don't know a lot of things related to this and all of those unknowns scare the shit out of me or worse. Not knowing sucks. Or maybe it doesn't. I guess I just don't know.

It's all relative

2006-07-08T19:19:00.000-06:00

I'm sick. I feel pretty low. Nathan is sick too. And his counts have been bottomed out for awhile. Makes it hard for me to complain too much. I can't even imagine how nasty he has been feeling.

The Importance of Family

2006-07-05T14:27:00.000-06:00

My parents are coming for a visit. We were trying so hard to visit them, but then everyone's health here started to "go South". I'm really looking forward to having them here. "Looking forward to" isn't quite right. I think some of that good parent love will be good for me. Once we started our family I gained a new appreciation for my parents. I think that is natural. You begin to understand what the love they feel for you must be like as you experience a similar (I don't believe any love can be the same) love for your own children. I get an even stronger sense of that now. I struggle constantly with watching Nathan fight, mostly unknowingly, for his very life and the fear and pain that it causes me. I feel so hopeless so much of the time. I know my parents feel the same way as they fear not only for the life of a grandchild, but also feel helpless while watching their own child suffer. They sure have had a rough road through this battle too. They do make a difference, even though they may not feel that way at times.

Fever Watch

2006-07-04T22:36:00.000-06:00

We are all pretty tired around here. We have had the obvious stresses of illness, hospital stays, restless sleep, and etc. It seems we may all be sharing a bit of a bug now too. Lauren's nose is running and she was crankier than usual. Susan was dozing by 8pm and out for the night as soon as Lauren went down. I'm beat at 10:30pm as I write this. I just checked Nathan's temperature though and it was higher than I'm comfortable with. His docs are being really good about trying to keep him out of the hospital. If we can get his fever down with antibiotics and fever reducers (tylenol) then they want to keep him at home. His fever just shot up pretty good though. It was time for the tylenol, but I'm not comfortable going to bed until I know it has gone down. I'll check him again at 11:30pm and then hopefully it will be low enough to crash until our alarm goes off at 3am to check him and give him more tylenol. This sucks, but it is better than having him in the hospital if we can get it back in control until his counts go up.