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 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.
He settled down and said he wanted to go to sleep. I went and sat and the bathroom and cried.
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.
- Ralph Waldo Emerson, The Tragic
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.
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.
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.
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.
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.
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.
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).
Any medical reason for the consistency and the 200 cc increments?
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.
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.
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.
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
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.
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, you can refresh your neuroblastoma knowledge with this primer from Dr. Jeff Hersh.
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.
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.
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.
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...
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.
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.
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.
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 negative interactions that fathers experienced significantly affected their levels of psychological distress. No such effect was found for 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.
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.
Wow. Thanks for caring.
 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 ;
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 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.
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
1 : BEREFT, FORSAKEN
2 : being in poor condition : MISERABLE, WRETCHED forlorn tumbledown buildings
3 : nearly hopeless forlorn attempt
1 : to cherish a desire with anticipation hopes for a promotion
2 archaic : TRUST
1 : to desire with expectation of obtainment
2 : to expect with confidence : TRUST
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
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.
Life is sadListen to Redbird's version here (5.05 MB via RapidShare).
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?
Anyway...on to the entitlement story. Thursday morning (after getting Nathan settled into the hospital in the middle of the night and getting about 2 hours of sleep) Susan called saying that Julia was feeling very bad (she had been battling a cough and intermittent fevers for about 10 days) saying that her babysitter took her pulse oxygen level and that it was really low. She already had a doctor's appointment scheduled that we were going to cancel, but decided we needed to keep. Leaving the hospital and going straight to get Julia and then straight to the doctor would get me to the appointment late. I wanted to change clothes at least (I was wearing the sweat pants and t-shirt that I had worn to the hospital and "slept" in), but I figured I would try to keep as close to the appointment as I could. On the way I decided to call and warn the office I would be late so they didn't think that we had just not shown up. I had a conversation with the scheduling lady that went something like this:
Me: Hello. I have an appointment for my daughter that I will be a bit late for because I just left the hospital where I spent the night with my other child. I didn't want the front desk to think we were just a no show.
Lady: How late will you be, Mr. Gentry?
Me: I think about 15 or 20 minutes.
Lady: Hmmmm......If it were 5 minutes that would be okay. 15 or 20 will cause us scheduling problems.
Me: Ummm......Okay. You see. My son has cancer and was just hospitalized with fevers and a compromised immune system. I can't be on time because I just left the hospital.
Lady: I know. But you will mess everyone else's appointment schedules up. Let me see...Okay. You can see the PA (Physician's Assistant) when you get here.
Me [patience gone]: Look, Lady (and I did actually use that "title"). I'm going to be 15 to 20 minutes late. I called out of courtesy. My daughter will see the doctor that she saw last week and has her appointment scheduled with when I get there.
Lady [flustered]: Okay. I guess we'll squeeze her in.
Luke hangs up phone.
The practice we go to is great. They give us lots of care, listen closer to what we as parents have to say and suggest than I would guess they do for most people, and really work with us. The doctors and nurses "get it". Apparently the scheduling lady did not.
I have had some real problems with stress and lack of patience interfering with my ability to do the one thing that is most important to me, especially now. That one thing is to enjoy the time I have with my family and to be as good a husband and father as I can. I've got to get a better handle on this because things are just going to get worse.
Sorry, no comments. Even though you mean well and there may be some truth to it, this is one of those times I don't want to hear anyone pat me on the back. Yes, I'm doing the best I can. Sometimes, sadly, my best isn't good enough. Now I just have to find the trick to improving on my best.
I don't mean to diminish the impacts of chemo here. Some chemos are tolerated well. Some are rougher than others. Some take some time to hit. No matter how hard or not hard chemo hits a body, it all sucks because of the mental and emotional impact of *why* the chemo is being given. The nurses say this cycle that Nathan is on will start to hit him in the next couple of days in terms of feeling bad. I'm sure it would have kicked my ass already.
Here is a picture of a 6 year old boy on day 2 of a 5 day cycle of chemo jumping through the sprinklers. He is coping well. He is bummed and emotional and probably a bit scared although he hasn't really talked about that aspect. He does still carve out some space for fun, and last night it was in the sprinklers...at least until we told him it was time to come in for his bath and bed and he melted down.
Nathan turns 6 tomorrow and has been fighting cancer for over 3 years. We have never had the conversation with him or Julia (4) that cancer could cause him to die. They have asked the normal age-appropriate questions about death. We have explained simple things like some people die in accidents, and that some people die because of serious illness. We have explained that, yes, sometimes children die. They know, obviously, that Nathan has cancer and that it is a serious illness/disease. They know that illness can cause people to die. And they know that sometimes children die. They are smart enough to put it together and have been for some time. They have never taken it to the next step though and asked whether or not Nathan might die because of his cancer. So far our philosophy has been to let them dictate what they were really ready to learn and understand based on their questions. I suppose at some point this approach may have to change. First and foremost, I think they know now. If they don't, they are purposefully not letting themselves make the connection. The other big thing is that I'm now afraid what they may hear and learn from other kids now that they are in school and involved in other venues around large numbers of other children.
On the way to the airport to pick up her big brother after he just got scanned to check for relapse, Julia said to me out of the blue, "Sometimes kids die". I asked her why she was thinking about that. She said she didn't know. I just think that she didn't really want to acknowledge the reason. Later on in the drive she said to me, "Daddy, I love you. I'll love you forever. Even after you die."
Heavy times in the Gentry household.
I've been contemplating posting about scans for the last couple of weeks. I've decided that I can't adequately describe what it is like. I'm not sure those who don't go through this want to know what it is like. I'm sure your imagination can do better on this one than my words ever could. Every time we do this I'm reminded that I fail to live each and every day to its fullest and to savor and enjoy my time with my family as much as I should.
So...scans are on Tuesday and Wednesday. Results will start trickling in. Send Nathan your best prayers, thoughts, vibes, mojo, etc.
So the tie-in for Cancer Dad is that having a seriously ill child complicates this process a bit. Sometimes these exchanges can be a bit daunting anyway. "Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email, tell you a bit about what I've been doing for the last decade, and hope that you might do the same in return." Most of the time the reception is really positive and friendly, but it is still a bit uncomfortable at times. So the fact that I have a kid with cancer is quite understandably a huge part of my life. Now change the above to, ""Hi, remember me? We fell out of touch, probably for a reason, but I thought that out of the blue I might drop you an email and tell you a bit about what I've been doing for the last decade. I got a job, got married, had kids, live in Colorado, and have a kid with a rare and deadly form of cancer. How have you been?" It isn't like I do this a lot, but every six months to a year or so I probably get the itch to touch base with someone. I take the approach of sending a short email hitting the highlights (mostly being married to a wonderful woman and having three incredible kids) on my goings on and leaving out the lowlights. Typically I get a very positive and detailed response in return. I just got one last week. It went something like, "I'm so happy that you have such a wonderful and happy family". Well, now I feel a bit like I lied through omission. I've been through this once before where I followed this formula. At just about this time I dropped the bomb and sent the, "Well, yes, I am happy that I have a wonderful family but I feel a bit odd about having omitted this one little detail...". I never heard back from that guy.
So here is the deal. I really don't care for the most part if the people I'm reaching out to can't or don't want to handle the fact that I have a seriously ill child. I would care if these were the people that I seriously regretted having lost contact with, but I can't work up whatever it is I need to reach out to them anyway. Some of these people were good friends though and I don't feel genuine having any type of relationship with them, even if it is a somewhat superficial email-based relationship, and leaving out something so fundamental and important to my life and who I am. I also don't want to appear like I'm trolling for sympathy or attention.
So, I guess I'll reach out to old lost friends periodically and just have to drop the bomb and see what happens.
What has become obvious to me though is that given how money is currently distributed for research for various cancers, the rarity of pediatric cancers and perception that pediatric-cancer=leukemia=treatable puts pediatric cancer funding pretty low on the totem pole. If the big, national organizations aren't cutting it, who is leading the charge for raising money for kids with cancer? Quite clearly it is parents of kids with cancer or parents that have lost children to one of these monstrous diseases. I have not had the strength to be part of the lead in this charge. I'm not sure I ever will. I have much respect for those who find it. In some cases I'm sure it is a form of self-therapy, but it is more than that as well. It is a burden. A huge burden. The burden on parents with children sick with any serious or chronic illness is terrible, and to throw in the burden of legitimately (at least in my estimation) feeling like it is not only your responsibility to fight to get your own kid better but that you have to be fighting to find a cure for all the kids is really just insane. This is how it works though. I guess it is just one of those harsh realities. The people out there fighting for funding and for a cure are those that have been "touched" (or punched or however you want to look at it). I wish this would change, but I doubt it will. These poor kids and families have it all stacked against them. If the burden falls on those that have been stricken with this, and getting stricken with this is "rare" in comparison to adult cancers, then the progress is inevitably going to be slow. A lot of these incredible kids and families don't have time for slow and steady progress.
Kudos to those families and friends of sick kids that get out there and fight so hard to make a real difference.
Nashville Scene, USA -Further review of the article revealed this blurb about a documentary about pediatric cancer. I'm not sure where I've been hiding, but I really knew nothing about this film.
1 hour ago
... That Hungarian stoner comedy or four-hour pediatric-cancer documentary will be something ... journeys too are a sort of crossing over, from childhood into adulthood ...
A LION IN THE HOUSE (1:15 p.m.) Simply put, Steven Bognar and Julia Reichert’s devastating documentary is one of the two or three best movies in the entire festival, perhaps even this year—although its unflinching portrait of children fighting cancer over a six-year period in the Cincinnati Children’s Hospital is something any parent will dread. Themselves parents of a cancer survivor, the filmmakers document an agonizing cycle of fragile hopes, new treatments, temporary remissions and terrifying relapses: parents age and children wither over the course of the film’s gripping four hours. And yet the overall impact is cathartic rather than depressing, in keeping with the Isak Dinesen quote that provides the film’s title—which says that you don’t know what it’s like to be alive until you’ve lived with lions. Kudos to the filmmakers and to the unimaginably brave kids and parents who gave them permission to film—some of whom will reportedly attend the screening. —J.R.I tend to think that I do not want to see this film. I suppose I'll be torn on it. On one hand I'm very curious about how the lives of cancer families are portrayed in such a "devastating documentary". On the other hand, my family lives the life and devastation of pediatric cancer. I don't really need a four-hour on-screen dose of it. I'm pleased that this subject is getting this type of attention and I really hope that it is done and received well. We'll see if I ever work up the desire to make a judgement on that myself.
Interview with the filmakers
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I'm a little torn on this. I'm okay with the thought that cancer can occur because of environmental factors but that it can also occur randomly. If there is data to suggest that environmental factors related to the types of activities that occured in Taylorville (5 cases listed in a town with a total population of 11,427 as of the 2000 census. By comparison, Chicago area zip codes accounted for 87 cases during the timespan the newspaper originally requested) can cause neuroblastoma, then the general public should be made aware, or at the very least scientists and health officials should looking closer at these possible connections. My son is on the registry and I'm a bit embarrased to admit that I don't know too much about its purpose, although I always assumed that it had something to do with acquiring large enough samples of tumor tissue and etc for laboratory testing and trials and also to be able to statistically analyze trend based on various factors such as location, family heatlh history, etc. Shouldn't our public health system be doing this type of analysis? Are they? Why does a newspaper feel that they need access to the information to do this research? Are they in it for the sensational story alone? Or is there real evidence that our public health systems don't use the registry to perform this type of analysis? I guess I need to do some more research of my own.
The State resisted making the records public. I have worked for various state agencies as a consultant and while in my experiences they generally want to make information available to the public, there is also this wariness of the "slippery slope". They fear if it is too easy then they will (a) get overburdened by responding to information requests and (2) that they may lose the ability to keep some information from the public based on their "professional judgement" or the privacy of their customers. The articles I read this morning seem to suggest that the biggest argument against giving up the information is patient privacy. Patient privacy is a serious issue and it is probably a bigger issue for adults on the registry than for kids. I'm sure that there are some families that keep their children's health information very close and private, but in my experience with other neuroblastoma families, it is pretty easy to find at the very least basic information about the kids and their health. Nathan's name, where he lives, the basics about his treatment, and a bunch of other information could probably be found just by pulling information from various web-based tools we have used to keep friends and family members informed about his condition. If these papers wanted to work hard enough they could likely find the bulk of the NB kids in a given area, especially in smaller communities like those found in Southern Illinois. Given the registry data, it will be very easy for them to find out the names and other information of those on the registry. This really doesn't bother me too much as a parent with a child on the cancer registry. Anyone could pretty easily find Nathan if they were looking for neuroblastoma kids in our area. As an adult on the registry, I might be much more concerned about my privacy. Nathan as an adult might be much more concerned about his privacy than we are now.
I thought I would have a stronger opinion about all of this by the time I wrote out my thoughts, but I don't. I'm very interested in the possibility of clusters. I believe that they can exist, but I personally doubt that neuroblastoma cases will ever found to be primarily in these "clusters". I'm also interested in the privacy concerns over making cancer registry data public. I think that independend researchers have probably often been better and more efficient than public resources at evaluating data and trends and that there could be real value to allowing this information out in some form or other. I think we need to be very careful of the privacy of the people on the registry though, even though I'm not terribly concerned about that from my own family's standpoint.
(Special thanks to my legal expert, Jim B., for tracking down the link to the supreme court case.)
Technorati Tags: cancer, neuroblastoma, childhood cancer, pediatric cancer
So I'll try and shake my fear, but I'm sure it will come back in brief waves until we get a couple of "normal" days in a row out of him.
(I like this post title because it is self-referential in that I have borrowed the title from my brother.)
I'm not "mad" right now. I do get mad. When I do I'm often just letting out my anger. I get mad at my kids. Sometimes I get mad at Susan. I get mad at the dog. I get mad at idiot drivers. No. As I write this now I'm not mad. I'm angry. And angry is something much deeper and more insidious. Mad is an outburst. Angry is an emotional state I can't shake.
If I can't shake this anger, why write about it now? Saturday will mark the third anniversary of Nathan's diagnosis. April fools! That is why. I see that date coming on the calendar. It isn't circled in red. I don't have a reminder set on that date in Outlook. It might as well be and I might as well have. It just pops. And each time it pops I chase the same train of thoughts and emotions. It goes something like this...I should be happy. I should be able to celebrate it. After all, three years is a long time for this diagnosis. After all, the 5 year mortality rate is approximately 30%. This is where things start to turn in this chain of thought. Three years? That is kind of pushing five years. The chances of making five years are bad.
Then I do the fucking math (it isn't hard). The math I'm doing doesn't logically apply to Nathan, but I still do the math. I get mad when I chase these thoughts around and my anger gets fueled.
I could go on and on about what I get mad about. I could give you a laundry list of the things that spark my anger. That is what it is like too. It is very much like static electricity. I walk around all day and my anger kicks around building up energy and it has to find that point where it can jump to something else.
I spark and get mad, but what am I really angry about? Is it obvious? The cause is clearly obvious, but I'm not angry that Nathan is sick. I'm angry that life is what it is, and that seems to be a hard thing to get over. At least for me. Susan and I were living outside of the reality of life. We met young. We were happy. We picked a place to live that we liked a lot. We had good jobs and made good money. We bought a house. We got a dog. We started a family. I wouldn't have thought I was naive. I knew that the nature of life was messy, but I guess I didn't expect it to be messy for me. April Fools Day came and it wasn't funny. And all of a sudden life was what it is, messy and hard and a struggle every day. So if I had to boil it all down, I'm angry because my life doesn't match up with some ideal or expectation of life that I didn't even really acknowledge that I had. I'm angry that the reality of my life doesn't match the fantasy that I was living out and expecting to continue.
Now I could be delusional in my little pop-self-psychology analysis here. I think I'm at least on the right track. And I'm so damn mad at myself for being able to recognize at least some of the reality of it all but still unable to deal with it as well as I would like and feel that I should.
Life is messy. Get over it. Give up the fantasy. Embrace the beautiful parts of reality. Love is real and beautiful. Love cannot be fantasy. Accept the love. And give it back. Revel in it.