Bees!

I just couldn't leave my last post at the top for too long as it is just too awful.

So - for some lighter fare...

The other day Nathan and Julia were getting set to play Uno with Luke. Lauren was way too interested and I could see trouble brewing and so I asked her to go for a walk. She is 19 months old - by the way.

I figured we walk to the end of the cul-de-sac and on the sidewalk for a few minutes but she wanted to keep going! (she is walking - not is a stroller) We walked to the next cul-de-sac and started up the big hill behind us, which has wild, native grasses and plants.

I pointed out ants, which she adores, and she had a great time watching them, in that classic toddler post - legs bent, bottom almost touching the ground and head bent forward. She thinks all bugs are bees and so she kept excitedly saying "bees!" and giggling as they raced around her feet.

She decided she was done and we walked home, braving some sprinklers on the way. She was the best company! I can't believe she has turned from a baby into a little person. It was a wonderful escape from all the awfulness. I will be sure to do it again soon.

Terrible decisions

We have had to make a whole lot of terrible decisions during Nathan's battle. Decisions that no parent should have to make about the life of their child.

It seems they just get harder and harder.

Nathan is currently dependent on platelet transfusions. He needs a transfusion every 5 days.

So - today the doctor (not his regular doctor) asked me if we wanted to transfuse. The alternative is for Nathan to hemorrage to death. Nathan was sitting there in the room so we had to speak obliquely about things but I basically said that it would depend on what else Nathan was likely to die from. However, we couldn't really have that conversation and I just said that I thought we wouldn't want him to bleed to death.

So - I guess it is coming to the time when we need to decide how Nathan will die. Bleed to death? Infection? (forgo a preventative antibiotic he has been getting) I think the usual thing to happen is a tumor takes over the abdomen or liver and and shuts down the vital organs. We don't even know if he has any such tumors. We do know he can't go on hospice and get the services they provide while he is still getting transfusions but I am thinking if we stop transfusing we won't have much time to need their services anyway. I have no idea if bleeding to death is a bad way to die. Doesn't sound good to me.

Anyway - it is all just awful. It is worse right now because we have very little information from the doctors and we hope to remedy that soon.

Something's gotta give

Sorry for the lack of blogging. I have been updating Nathan's page almost daily so that takes my energy away from here.

Anyway...

If you ran into me on the street and chatted with me you'd think everything was fine. I make a big effort to be that way. I don't want people feeling sorry for me - most especially myself!

However, considering I have a child who is dying and everything he and I and us have been through there is a price to pay for that "everything is fine" demeanor.

First and foremost - is my marriage. Don't be alarmed - my marriage is fine. However Luke and I deal very differently with stress. I wall myself off in all ways and he could use my support and closeness. Therefore, I cannot give him what he needs. This is something he and I discussed the night of Nathan's diagnosis many years ago and so it is something that we (he) just deal(s) with. Right now, it is particularly noticeable to me.

Second - is my mental health. I have night terrors and they have been ramping up as of late. They are particularly bad lately with people/Luke/Playmobile toys (don't ask) trying to kill me. They end up with me balled up on the floor shaking and crying.

Thirds - my friendships. This is kind of related to #1 as I find I can easily socialize with casual friends, but those closest to me I find harder to spend time with. They KNOW me and aren't fooled by my facade. But, I NEED that facade to function and I don't really want to step away from it, so I think I am avoiding some of my friends (you know who you are!).

There are more ways in which I am failing but I think that is enough for now. I am doing the best I can - but my best is never good enough for everyone. I know everyone understands (well except for my kids) so I am not worried. If this were to go on for too long I suppose it could become a problem.

June 16

Seven years ago I gave birth to my first child, Nathan. I became a mother. I was instantly in love.

Seven years later I am "celebrating" Nathan's last birthday.

When you give birth to a child you never imagine your time with them could be so limited.

I think of holding Nathan in my arms and imagining his future. It is just so wrong that he isn't going to have one. That I don't get to witness the man he would have become.

I no longer really imagine the futures of Julia and Lauren. I find that to do so seems such a luxury and I just can't afford it. Instead of expecting them to grow up - I really hope it will happen. I do not take it for granted. It is a loss of something most have as parents. You expect your children to grow up. I will never expect that again.

The joy I have in my other children can never be as carefree as it could have been because it is tempered by knowing I could lose them too.

It should probably be a happy day but it is not. I am sure next year it will be an even worse day - so I am trying to make myself be happy that today he is here with us. It is hard.

What he said.....

I have been quiet - not sure what to say.

So - even though 99% of you read his blog too - I want to refer you to Luke's post on cancerdad.

I actually got to kind of explain this to a person I met for the first time today at a playgroup. I had to explain why my son wasn't there and why I was. It went pretty well.

Life goes on - even when you don't think it should.

Whatever I end up typing

I am sitting down to update this blog but I really don't know what to say.

Things that gave me much joy today:

Watching Julia try on a new dress and seeing her smile and excitement about it.

Having Lauren ask for Nathan, who was lying on the couch, and watching her recline on him and smile while watching TV with him.

Watching Luke and Julia cuddle before bed and looking at their beautiful blue eyes next to each other.

Other things were pure hell today - much more horrible pain witnessed.

Yesterday I had a discussion with Luke about Nathan's future and lack thereof that I wouldn't wish on any married couple.

So - I am wiped.

And..I have an out to stop blogging as I have a Frosty awaiting me now!

June

I don't think there is anything much worse than watching your child suffer. I can't believe we have crossed into this place. I knew it was coming. I have hope we can control it better. He woke up a few times in the night with pain and most recently at 5:00 am. So - I am awake now. I have a monitor next to me and I can hear his occassional sighs of discomfort. I really want him to get to have his birthday party today and enjoy it a little. In December I really didn't know if he would be alive in June. He has done so well that I have let myself hope for more time. My superstitious side has been worrying about the month of June. He relapsed in June the past two years and it has been my fear that this year he will die in June. Recently, I have felt optimistic that would not happen. Now, on June 1, I am not so sure.

no big deal...

So yesterday I spent from 4:30 to 6:30 at a birthday party with Julia that had large inflatable jumping things. She jumped - I chatted with my friends. All very suburban mom-ish.

I got home - took Nathan's temperature. It was way too hot. Talked to the doctor, packed a bag, strapped kid in car and went to the hospital for the night.

Did the hospital cancer mom thing all night. Same old, same old.

Now - I am back home. The baby is napping and the big kids are playing outside while I drink coffee and blog. Back to being a suburban mom again.

When I got home - Luke remarked at how unremarkable a night in the hospital is. It feels the same as any other routine activity in our household.

It makes me wonder how I will fit back into life when I am done being a cancer mom

Wheels

I now have a child-size wheelchair residing in the back of my van. I am trying to think of it as one of the many strollers we own.

We do now own a jogging stroller that Nathan can ride in but it isn't practical for crowded places as it is huge and has a fixed front wheel.

I think I have actually convinced him to use it, though his initial reaction to it was that there was no way he would ride in it. We go to a large church and for him to get where he is going and it to not take forever and tire him out I think he should hitch a ride. There is also the pain he has been having and the limp.

So - I hate it - but that is where we are at.

End of school craziness

My fellow parents of school-aged kids know of the multitude of end of school activities that take place this time of year. Both Nathan and Julia have had several such activities and their respective schools in the last week or so and Nathan has some more next week.

Trying to juggle these with an 18 month old is hard enough. Add in a sick kid who is going to school/or not/or coming home whenever/ to the schedule plus his doctor's appointments and you have the craziness.

It will be a relief when school is out next week.

I should mention that Luke has offered to help with all the juggling - but I feel like if I can make it work, even if complicated, I should so that he can work. After this fall - he doesn't exactly have time off to spare.

Something's missing

I had one of those things happen to me that I have had dreams about - now that it has come true - perhaps I won't have it anymore.

Yesterday, Julia was to go to a tea with a friend and later, Nathan was to go to an Air Force baseball game with Luke. Julia's friend was sick and so she didn't get to go to the tea. So, we decided Julia should go with Luke and Nathan to the game.

As they pulled away, Lauren cried and cried at the door. I yelled for Luke to stop and I decided that Lauren and I should go too. I hurried and locked up the house and grabbed Lauren's shoes and things and hopped in the van. As we approached the Air Force Academy - I looked down. I was barefoot.

A little searching of the van and I managed to produce a pair of Julia's neon green socks out of her backpack. So -on went the socks and we carried on from there. It was hot and the bleachers were metal - so my feet got a little bit toasted and I am sure some people thought I was crazy. We had a great time and it was no big deal.

I have a feeling I will be getting some flack from Luke for a while for this one.

As for the picture - before the game they had four men parachute down to the field. It was extremely cool.

Mother's Day - first grade style

I attend a Mother's Day tea in Nathan's classroom today. I was happy to go - but it has left me mostly sad.

First the funny (or not - I can't decide)

On a laminated placement.

My Mom

My mom is.....Nice
My mom likes....Me
My mom knows....what I am like
My mom says...we can't do something until we clean
My mom can.....cook really nice
My mom wishes...me and my sister can clean up our own mess
My mom loves....me
My mom is.....nice

So - I am feeling a little like an ogre - but one who loves her son - and can cook.

These events are just excruciating to attend. All these healthy kids and their moms. I am just so jealous that they will probably get to attend many more of these events in their child's life and this may (probably is?) be the last one I ever will attend with Nathan.

I held it together until a mom from from Nathan's Kindergarten class stopped me in the hall to say Hi and I started crying and had to apologize and leave.

I try so hard to be in the day, to be happy in the moment - but I am just not succeeding much today. It doesn't help that Nathan came home from school a while later. He is limping, has a low-grade fever and took a nap. Crossing my fingers someone else "gets it" so it is not the cancer.

To Find out or not?

So - I sit at the clinic with Nathan (on newly discovered wireless connection - yay!) and I haven't spoken with the doctor. Nathan is here for 6+ hours for medications today. Last time we were here he had some labs done. While these labs are not cancer markers as such, they can be used to track the cancer's progress in a case like Nathan's. He has drawn these labs before each round of chemo and they have been creeping up. Every time the doctor tells me the results it makes me feel like crap. It is bad news with no other real purpose. So - I think I just don't want to know this time. Nathan is feeling good. That is what matters at this point. We can't save his life. These bad lab results won't lead us to switch up Nathan's chemo. There is nothing else he can possibly do, treatment-wise. So - it is of no value to me to see it on paper that his cancer is getting worse when I look at him and he is doing about the same.

We have not scanned him for similar reasons. There is no useful information to be gained from scanning right now. Should Nathan start to have troubling symptoms or pain then we will scan him to see if he can have palliative radiation.

So - as I write this I think I won't inquire about the labs. They will only make me feel ill and change nothing. Nathan is happily building with legos next to me after doing some independent reading. He is fine today. That is all I need to know right now.

....May Flowers

Springtime in the Rockies.

Pet Peeve

I read a lot of blogs/website of other families with kids with neuroblastoma.

Once in a while I run across one written by the parent but as if it is the child speaking.

Ick!!!

I have to stop reading immediately. Why do people think they have the right to even assume to represent what their child is thinking, no matter what the age. Besides, they are usually cloyingly sweet with lots of pet names of the other members of the family and words like "ouchies" and "Boo-boos".

Not my thing.

Baby cuteness

I think it is time for a baby picture. Sometimes - I just need to bask in her cuteness.

Keep me in your heart

Luke recently blogged about Warren Zevon's album, "The Wind". He wrote it when he was dying of cancer. I am not a huge Warren Zevon fan but I really like this album. It's got some really good music and most of the music was written from his perspective of someone who is dying, which is a unique perspective. It is horrible that he died but I can't help but think that, in spite of that, how lucky he was to be able to create this music about it and to say goodbye and leave his mark on the world the way he wanted to. (I don't think that came out the way I wanted to but I can't think of another way to say it. He is certainly not lucky that he got caner and died)

As I drove home tonight, I had my iPod on my"everything but" playlist which is all my music except classical and religious and one of his songs came on.

What would you say, in song, to your spouse if you were dying? I think he nailed it.

Shadows are falling and I'm running out of breath
Keep me in your heart for awhile

If I leave you it doesn't mean I love you any less
Keep me in your heart for awhile

When you get up in the morning and you see that crazy sun
Keep me in your heart for while

There's a train leaving nightly called when all is said and done
Keep me in your heart for while

Sha-la-la-la-la-la-la-li-li-lo
Keep me in your heart for while

Sha-la-la-la-la-la-la-li-li-lo
Keep me in your heart for while

Sometimes when you're doing simple things around the house
Maybe you'll think of me and smile

You know I'm tied to you like the buttons on your blouse
Keep me in your heart for while

Hold me in your thoughts, take me to your dreams
Touch me as I fall into view
When the winter comes keep the fires lit
And I will be right next to you

Engine driver's headed north to Pleasant Stream
Keep me in your heart for while

These wheels keep turning but they're running out of steam
Keep me in your heart for while

Sha-la-la-la-la-la-la-li-li-lo
Keep me in your heart for while

Sha-la-la-la-la-la-la-li-li-lo
Keep me in your heart for while

Keep me in your heart for while

Why we need a cure

These Pulitzer Prize winning photos are of a boy dying from neuroblastoma. They show the truth. Sure - people know that kids die from cancer but what they don't know is how barbaric the death can be. Who would want to know that? I know some horrible details about the death of some children. Dying from neuroblastoma is often a extremely painful process with tumors growing and pressing on internal organs, tumors growing visibly on a child's head and orbits. It is truly horrifying.

I hope these pictures make it to the computer screens in front of the lawmakers who will vote on the Conquer Childhood Cancer Act of 2007. How could they vote no after seeing this?

You don't have to watch...

It's a first grade music program - something only parents and grandparents could love.

It was a bittersweet thing for me. His first and maybe (probably?) last school music program. The music teacher gave him the best part. Her son had cancer years ago - she knows.

There were 94 first graders participating!
(if the video is blank - it is still being processed - check back later)

I am your worst nightmare

Ok - so hopefully not - but recently I came across a blogger who (I think) read Nathan's story. It clearly left them shaken and I could tell it was one of those things they wished they had never read so they wouldn't have to think of the possibilities of losing their own children.

I guess after all these years I have become a bit numb to it all. I am also blessed by wonderful friends who take my lead and treat me like any other friend but will also allow me to talk about the realities of losing Nathan. If I scare them, or they feel horribly sorry for me, they do not let that show to me and I appreciate it.

So - I guess I forget how shocking it all can be. I think there are people out there who have never really contemplated losing a child and the thought is horrifying. I remember reading on a parenting board a few weeks before Nathan was diagnosed, about a young child diagnosed with brain cancer. I remember being upset and crying and wondering how someone could bear it. Then it happened to me.

The thing of it is, no matter how bad things get, I personally know people who have it worse than me. Imagine my situation, but also imagine a parent who has left the picture. Imagine losing more than one child or losing a husband and a child.

I guess I will go back to my world with my normal. I just forget sometimes how abnormal my life is!

Playmobil

Nathan is very into Playmobil toys. They are pretty expensive but very cool. I am feeling good about the expense after the following conversation that took place after Nathan got home from school:

Nathan "Mommy, can I use the computer?"
Me "Sure"
A minute later....
Nathan "Nevermind - I found something much more fun to do!!"
Me "What?" Wracking my brain for what fun thing dropped from the skies into my family room
Nathan "Playmobile!"

All three kids* are now playing with the Santa House happily.

* yes - including the 16 month old and yes she is way too young but what can I say - she is a third child.

Easter Sweeties

Sick

I am sick.....

Probably the flu

will post again when I am better.
I have a picture of my three cuties on Easter

I can't keep from singing!

I thought I would acknowledge the title of my blog this week. It happens to be very true right now. My choir is preparing the Brahms Requiem. We have been preparing this since February - but only committing a 1/2 hour per week as a whole choir with 4 weeks of hour long sectional rehearsals. I didn't think it was going to come together but it has. It is a very difficult and demanding piece.

So this has been our schedule lately.

Last Saturday - Requiem rehearsal 9am - 12pm
Sunday - usual 2 services and rehearsal 7:30am - 10:30am
Monday - Requiem rehearsal with orchestra 7pm - 10pm
Tuesday - regular weekly rehearsal for Easter Sunday 6:30pm - 8:30 pm
Wednesday (today) - dress rehearsal for Requiem 7:00 pm - 10:00 pm
Thursday - NOTHING rest my voice
Friday - 6pm - 9pm - rehearsal and performance
Saturday - Easter Sunday rehearsal 10am - 11:30am
Sunday - Easter services - 5:00am arrive for sunrise service, followed by 7am, 8:30am, 10:15 am and 11:45 services.
It is exhausting but I love to sing and so I am enjoying it immensely.

Oh - and of course, thank you to Luke for taking care of the kids so that I can do it!

None of the above

So, if you will recall in my post so awkwardly titled, "Not good, Bad or the Worst" we were testing Nathan's bone marrow. I am cross posting this information from Nathan's website, but I wanted to update in here as well.

His bone marrow is not failing. That is very good news.

His bone marrow aspirate has some scattered clumps of neuroblastoma in it. The bone biopsy was negative for neuroblastoma. So there is some cancer but not very much. To put it in perspective, the bone marrow in Nathan's left hip was almost completely replaced with cancer when he was diagnosed. When he relapsed last June, he had, I think, about the same amount of cancer in it and it was gone for the past few times it has been tested. This news is fine. I'd rather there be no cancer there but I expected there to be some, and there is. Nathan's doctor said he felt it was good news that there is so little and had there been 25% or more it would have put us in a very bad situation.

His bone marrow is 70% cellular. I don't quite understand this but this means there are various blood cells doing their thing and appear to be doing on OK job. What the test could not tell us is the state of his stem cells in his marrow. What we have to conclude is that the stem cells are not very good at making new blood cells and that is why his counts are poor. ...

...So - I am not convinced that the chemo is not affecting his platelets (sorry for the double negative) but it doesn't really matter because we want to start chemo anyway. Nathan is having increasing pain in his hip (in his illiac crest - the big bright spot on the MIBG scan) and we are hopeful the chemo will help with that. He will receive the irinotecan at home tomorrow through Sunday.

I am very relieved his bone marrow is not failing. That option seemed so horrific. His bone marrow packed with cancer was a pretty awful option too because that meant he would soon be in severe pain and unable to walk. It is hard to say which form the the cancer is going to come out and be the thing that starts him down the very bad road to the end. I am just so relieved not to have the answer to that today. Today Nathan has been running and riding his bike, despite the hip pain and that is what I want to see.

April Fools

I never really cared too much for April Fool's Day and for the past four years, it kind of makes me cringe to hear April Fool's jokes because Nathan was diagnosed on April Fools day, 2003.

I have mixed feelings about this day. Some are positive and some negative. I wrote about my overall feelings about it on Nathan's page. I will cut and paste it here.

It's April 1, 2007. Four years ago, today, we first heard the horrible words "your child has cancer". Unfortunately, no one followed that statement with "April Fools!"

Nathan was two. Now he is six! I think at the time, I naively assumed that four years later Nathan would either be dead or be cancer free, not still in the battle.

I am so very grateful for these four precious years! They have been filled with terrible things, but mostly, they have been witness to a toddler growing up into a school-aged boy and I am so thankful we have gotten to see that happen.

I can't put into words how much I wish that this anniversary could be joyous, that Nathan was cancer-free, but I am full of joy that Nathan is here today. I am listening to him sing as I type this. He is happy and so am I.

This approaching anniversary has had me thinking about diagnosis. The utter horror of it all is hard to describe. I have been feeling an urge to put into words the events than unfolded. Bear with me, I don't know how long this will be.

In March of 2003 or perhaps a little bit before, Nathan started to have recurring low-grade fevers. We took him to the doctor once or twice and they wrote it off as a virus. These fevers from from the cancer. Then, on March 22 he woke up with a swollen eye. We were concerned about it and I took him to urgent care because it was during the weekend. They couldn't figure it out and sent us home. It was basically gone in a day or two so we didn't think much more of it. It turns out this was from the cancer in his orbital bone.

I also remember, around that time, changing Nathan's diaper and having him wince in paid as I lifted his legs and also when I picked him up under the arms. Once again - I didn't think much of it. The last weekend of March, I went to California by myself to visit my best friend, Lisa. I remember Luke calling me to tell me that Nathan was limping and then not wanting to walk. It seemed to come and go a bit. These symptoms were from the cancer in his bones and bone marrow.

I got home on a Sunday and Monday morning we took Nathan to the doctor once again and they immediately suspected he had a septic hip. They got him an appointment with the pediatric orthopedist and she also suspected the septic hip. He was feverish and feeling lousy. She managed to pull off getting him a sedated MRI at 6:00 at night. I think she was very worried and probably suspected some other serious things. We went right over to the MRI and witnessed him getting an IV for the first time and watching him put asleep. Then they put him in the MRI and Luke and I sat outside in a little booth and listened to this horrible racket and could only imagine his little body in it. That was awful.

The MRI showed "something" and so the orthopedist took him into a procedure room to draw fluid out of his hip. If I recall, there wasn't much in there and she concluded it was probably not a septic hip. She admitted him so further tests could be run. We were told that perhaps he had juvenile arthritis or some weird infection. I think leukemia was mentioned. At this time, I don't believe he had a CBC done yet. They brought him into a room and place different IV in him and that was simply awful. It was my first experience, with many more to come, of holding him down while someone did something painful to him. As a parent, that really sucks the soul out of you. I went home to be with Julia and Luke stayed the night. He spent most of it in a chair with a screaming Nathan who came off his sedation very badly.

The next morning I went back to the hospital and we had a consult with infectious disease. We were told that perhaps Nathan would need to receive IV antibiotics directly to his hip for several weeks. It all sounded horrifying. The orthopedist was his doctor at that point. She ordered a bone scan. He had the scan later in the afternoon and we had to keep him still on the scanner for a half an hour. I remember singing songs and making up stories about Dora the Explorer to keep him happy. During the scan, I remember the tech asking me if he had anything wrong with his kidney, but I brushed it off, because after all, his hip was the problem.

Around bedtime, Luke went to get Julia and spend the night at home with her. Shortly after he left, the doctor came in to talk to me. She took me to an empty room and I felt panicked. (My heart is beating fast just thinking about this). She sat down and drew a picture and told me they were pretty sure that Nathan had cancer. She kept trying to show me the picture and kept saying that "it was very, very bad". I remember being confused and not understanding how cancer on his kidney had anything to do with his hip. I think she tried to explain it to me and I was not getting it. She was also crying and kept saying how bad it was.

Afterwards, I went back into Nathan's room and tried to gain my composure. The nurses were also teary. I got on the phone and called Luke. I just told him he needed to come back to the hospital but I didn't tell him why.

They started moving up to a private room. His roommate's mom had overheard everything and told me good luck. Nathan was as happy as a clam. He had no idea. The nurses took him to color at the nurses station. Luke arrived and I had to tell him that Nathan had cancer. It was one of the hardest things I have ever had to do and I am tearing up just thinking about it. I remember feeling so physically sick. They settled Nathan in and he went to sleep and Luke and I sat on the floor of the hospital room with our backs against the wall and cried and talked. There was not going to be any sleeping done that night. My friend worked the night shift on the maternity floor so I went up there to see if she was on. She was and I told her and she said she would come see me when she had her break. There was a chair sitting in the hallway and I recall just sitting in that chair for a long time and she came and I sat with her while she ate. Morning finally came and Nathan had to have a cat scan. They brought us the oral contrast and told us he had to drink it. He didn't drink out of anything but a sippy cup and when I saw the volume I knew there was no way he would drink it. Now I know a syringe works well - I wish I had known that then. So, they had to put a tub through his nose into his stomach. We had to hold him down while they did that and that was just awful. He struggled and gagged and they got it in but he threw it right up and so they had to do it again. They got the contrast in and took him to get his scan. I remember the tech joking with us as we brought him and and I could not believe he would joke at a time like that. Now, of course, I joke right back. He had the cat scan and then later that day we met his oncologists for the first time and they confirmed the diagnosis and told us all about the treatment. My brother (who is a surgeon) had come down and was there for the talk. I asked him to go with them to see the cat scan but I didn't want to see it at the time. He took me to get some food and home for a change of clothes and I remember feeling dizzy and completely spaced out. It was all so unreal.

The days that followed held a surgery and more horrors as we watched Nathan go through unthinkable things. The damage to my psyche was severe and some of it took its toll on my relationship with Julia, who was only 14 months at the time. She must have been bewildered that her mommy, who was always with her and cuddling her, all of a sudden was either not there or having trouble even looking at her. Her robust health seemed like a slap in the face, it seemed grotesque to me.

So - four years later and a lot of water under the bridge, I find I have not gotten over those events. I am clearly shaken just thinking of them.

I don't know why this happens to children. I don't know how, as parents, we are able to get though the horrors of it all. No parent should have to assist in something that brings pain to their child. They should not have to watch a child suffer. Life is not fair.

I could not have imagined at the time, the ways all this would change me for the good. I would not imagine the wonderful times we had in the midst of the bad. I just wish, with all my heart, that no other parent would ever have to hear those words. I hope there is a cure some day.

I hope.

Not Good, Bad, or the Worst

I have had a lot of experience with Nathan getting tested for this or that and running over the different scenarios in my head. This (testing Nathan's bone marrow to see why his counts are so poor) seems to be the first time when NOT ONE of the possibilities is acceptable to me. Sure - we have gotten plenty of news that was the worse-case situation, but we always had hope for the better outcomes.

So - for tomorrow's bone marrow aspiration, options are all crappy. I went over this a bit on Nathan's web page but I tend not to speculate there too much due to the very broad audience. I know that some who read that page have found their way here - and that is fine, but I do tend to let more out here.

Not Good - Nathan's bone marrow has been brought down by the chemo he is currently on. This is one of the only chemos out there that supposedly does not cause bone marrow suppression. If he can't continue on this - or needs to have more weeks off of it we essentially have to stop treatment on him.

Bad - Nathan's marrow is chock full of tumor. The tumor is crowding out the good bone marrow and that is why it is struggling. If this is the case - we will probably continue on with the chemo and support him with transfusions and neupogen.

The Worst - Nathan's bone marrow has failed. All the treatments he has had have killed it and it will not be coming back up. This one scares me to death. We have to stop all treatment and Nathan's white counts will continue to drop and he would inevitably get an infection and die from it.

All these outcome may point to stopping treatment on Nathan. That might be the right thing but is not something we are ready to do. The most important thing has been Nathan's ability to live a normal life and be a kid. So - we have to make a choice that supports that goal. If his white count drops too low he cannot go to school or to public places and that is not a good life for him.

So - all options suck. Who knows - perhaps there is another outcome I am not foreseeing. We'll just have to wait and see.

Living Donors

I want to share a news story with you. It is about a woman who received a kidney from a woman she didn't know whom she met through Matching Donors online.

This woman used to be my sister-in-law and is a wonderful person. She and my brother divorced a few years ago. I am so happy that her story is having a happy ending/new beginning!

Much debate can happen over the ethics of living donors and what ulterior motive people may have but this is an example of how this can work out for the good of both parties.

http://cbs4denver.com/topstories/local_story_069185256.html

Little People

I have a fondness for Fisher-Price Little People. As I child I spent many hours playing with them. Now, of course, Little People are not as little because of safety rules.

When Nathan and Julia were toddlers we acquired quite a lot of Little People toys. I think we have so many because I like them so much and I wanted to possess them.

Anyway - they have been mostly put away for a couple of years and now Lauren is old enough to enjoy them. It has been fun to get them out and make a Little People town withe them once again. Nathan and Julia have been having a great time too. There's nothing like rediscovering old toys, no matter how babyish they are.

By the way - I have to share this flickr set I came across of "old school" Little People". It brings back fond memories for me.

This is what it is all about

Me and my sweeties having a wonderful picnic today in some glorious weather.

Unsettled

I have been in this limbo land lately. While I am constantly thinking about Nathan's condition I haven't had to really immerse myself into it and have been able to go about my daily business as a mom.

I am starting to get antsy now. Nathan's platelets are dropping and his doctor swears that the chemo he is on is very unlikely to be causing the problem. I have reached out to the wonderful Neuroblastoma Family and have found one other child who had this happen while only on this chemo (irinotecan). So - I don't know if it is the chemo or his bone marrow starting to give out from all his years of treatment or from tumor in his bone marrow taking over.

Since we have been doing this chemo we get to feel like we are doing "something". Luke and I are not at a place where we feel we can stop treatment. We are very conscious of how the treatment effects Nathan and we have promised ourselves we will not put him through anything harsh anymore. It is clear his body cannot handle any chemo.

There are several parents on the Neuroblastoma listserv who are physicians and a few other who are very knowledgeable and they have started taking matters into their own hands. They are attending conferences for neuroblastoma researchers and some have significantly funded research. I have been contacted by these parents (and have met most of them) and have heard their ideas for possible treatments for Nathan. These are things that have shown promise in the lab. I am not sure how I would even go about getting some of these things for Nathan.

I just don't know if perhaps we should be trying to do more for Nathan. He still feels SO good. He does normal activities and it is so hard to just know we are letting the disease take him. We have fought this for almost four years. We have tried many experimental treatments. We have gone further than some would be willing to go. However - there are those out there willing to go further and we have witnessed it. How do we live with our decisions from here on out. How do we decide what measures are worth doing to buy more time? We have said in the past that we won't to anything that won't buy us at least as much good time as time spent in treatment, but we can only guess about that.

I can't say we wasted our time spending three months in New York last fall but if hindsight were 20/20 no WAY would we have done it. We were told the treatment could be curative. We were told it would be unlikely Nathan's counts would drop and even more unlikely he would need stem cells. We figured we could go back and forth between Colorado and New York for treatment. We learned a big lesson about clinical trials. They are Experimental!! Nathan was the first child enrolled on the study and so instead of 10 days in New York he spent 3 months. He spent 6 weeks in the hospital and had ZERO neutrophils for over 6 weeks and almost daily transfusions. I could go on about the horrible nose bleeds and high blood pressure. Then there is the fact that Nathan's disease is far worse after all this. That is the hard part to take.

We definitely made the best decision given the facts but we did get burned and we are afraid to get burned again.

So - I am feeling fairly helpless right now and it is a bad feeling when it is my child's life I am dealing with. I have been in a similar place before and I think that something will shift soon and it will be made apparent to us what we need to do next. I have a feeling it won't be a good thing when it happens but if it makes it clear what the best thing is for Nathan I will feel better.

Happy News

My brother and his wife had a baby girl yesterday. Her name is Jasmine Hope and she was 6 pounds 6 ounces and 18.6 inches long.

I am not sure when we will get to meet her - hopefully in a few weeks.

Embarrassing Tunes

I am doing some housekeeping on iTunes (to benefit my iPod). There are some songs on there that I am always pleasantly surprised to hear but I hope no one else can hear them.

I thought I'd share....

Please share yours in the comments (or on your own blog)


1. The Final Countdown - Europe
2. Don't Know What You've Got - Cinderella
3. I Just Called to Say I Love You - Stevie Wonder
4. Baby I'm Amazed - Lonestar
5. Groove is in the Heart - DeeLite

My old house

I lived in the same house my whole childhood, until I went to college. My parents had the house built and moved in when my mom was pregnant with me. They sold the house and moved to South Carolina when I was in my early twenties. I loved that house and the neighborhood. If you stuck me in the house today blindfolded I could walk around the whole thing without missing a step. I often have dreams about the house. In some of the worst it has been torn down.

So - "my" house is for sale right now. It has a nice tour so I got to see many of the rooms. I was surprised that it actually brought tears to my eyes. In my alternate life I would buy it and move back to Illinois.

Of course, it wouldn't be the same. I am sure this is all about childhood nostalgia. I had a really good childhood and that house represents that time in my life of innocence and happiness that can never be recaptured. Oh - to be back living in that house with my parents taking care of me and to has my most serious problems be about school and boys and clothes.

Untitled

I have been neglecting writing anything personal here lately because I have had a post brewing. Some have asked me how I am doing. Here's what I am struggling with.

How do you live your daily life with a child who feels fine but has a terminal illness?

I have the most inane thoughts throughout the day related to this.

I'm cleaning - I have a thousand papers from school and preschool. I don't have room to keep them all but how do I throw away anything that Nathan creates? When he is gone will I hate myself for throwing it away? Will it be more of a burden because after he is gone because then how can I ever throw it away?

I am setting up my Upromise account. I have to funnel the funds into 529 accounts. I put it all into Julia's - why bother putting it in Nathan's - it will go to Julia eventually anyway.

Nathan is throwing a fit. He wants something that I have said no to. I am being consistent with our rules around the house by saying no. Will I hate myself when he is gone for making him upset?

I recently made a bad decision. I decided not to get new hearing aid molds for Nathan. This was right after his most recent scans and I felt that maybe things were going to start going south fast. I took him in because his hearing aids needed to be adjusted but I told the tech that for several reasons I wasn't going to get new hearing aid molds. They are a little pricy - but not out of reach or anything. It was a decision made with my emotions. It turns out that with his hearing aids being turned up the fact that the molds were too small became a problem. Fortunately for me - the tech called the school audiologist the next day and she and the teacher of the deaf (who I both know) decided that they would go to the school and take the impressions and give Nathan new molds.

I just don't know how to make decisions about Nathan. Sometimes I feel like I am doing things right and other times I know I am not. I know people who turn their lives upside down for their children in this situation. They let them stay up all night - take them to buy tons of toys etc, etc. I just don't think that is the best thing..especially because we have Julia too.

I am glad we went to Disneyworld. That was one decision I made that was right. Otherwise I still tend to feel that life as usual is the best thing.

So - I am just left with my own struggles. It is awful but that movie title keeps coming into my head "Dead Man Walking". He's here but I can't shake the thoughts of his future. He talks about being a teenager, or middle school or when he gets married and I just answer him as if that will happen when I know it won't. It breaks my heart.

I know, I know.....people tell me that I can still hope for a miracle and I have not given up all hope but I am a realist and so I know the most likely scenario.

I try to be positive on a daily basis. All that matters on a given day is what is happening that day. Nathan feels great and I have plenty of time to feel awful when he feels awful so I really try not to think about it all - but then when I am doing the mundane things I can't but help but be confronted with something that reminds me of the situation and there I am factoring in my decision Nathan's future (or lack thereof)

So - there you have it. That's where I am with all this right now. I could not think of a title that I could live with so untitled it is.

Evangelical Oncologist

I read several medical blogs. One of them is a blog written by pediatric oncologist. I wanted to share a recent post that really touched me.

Here is a snippet
"I can tell you that nine out of ten people who learn that I’m a pediatric oncologist look at me as if I just told them that my dog had been run over by car. One out of ten, on the other hand, “get it”. They understand how amazing this work can be, how lucky we are to be able to serve our patients, and the joy of living that comes from living the full range of emotions with your patients. In order to make the other nine people open their eyes to the needs of oncology, it’s going to take a little something more than just showing them pictures of kids without hair. It’s going to take a little evangelizing."

Evangelical Oncologist

Night terrors

Some of you who know me well know that I have some form of night terrors/vivid dreams. Sometimes, they are relentless and other times I have weeks and weeks without them. I had been mostly without them for a while. The last night in Florida they came back and I can't shake them. Fortunately they are not the scary variety but they are the repeating kind. This means that I awake with the same "visions" and scenarios over and over again. this goes on for what seems like hours. Right now I am stuck with a dream that I am on a disney ride and my bed is the "car". Luke is asleep next to me and they are waiting for us to get out of the car and move along.

I probably woke Luke up several times last night. I just kept sitting upright and seeing everything in the room plus seeing the extra things in my dream.

That is the weirdest thing about my sleep issue. Whatever it is that I am dreaming I can still see in this state and I can also see my surroundings. I cannot be convinced that something is not there because I am hallucinating. Luke has learned the hard way not to debate me when I am in this state. He still does try to catch me when I leap over him running for shelter from the thing coming at me from the ceiling.

I guess I am lucky that I am not having the terrrifying version right now but I really would like to get off the ride tonight.

Field Trip

Last Thursday night at the fundraiser held for Nathan, his teacher casually asked me if I would like to go on the field trip with the class that happened today.

I stuttered out a yes and wondered out loud about childcare and such.

Then we went on our trip. I got an email yesterday from her asking if I could go.

The thing about it all was that I am not the type of mom who really wants to go on the field trip. When his teacher asked me I could tell she was offering something she felt was desired. Isn't that what the typical stay-at-home-mom does?

I feel guilty because I am not one of those moms. I don't volunteer in the classroom. If it weren't for having to pick Nathan up for school to go to the doctor I wouldn't ever set foot in the school because he rides the bus.

So - I kind of felt I should go on the field trip. What would that say about me if I didn't want to go?

So I went. I am glad I went. I can't say it was fun but I am glad to have done it. I got to bounce around in the back of a bus with 40 some first graders. I sat in an auditorium with several thousand firsts graders from schools throughout the city. There was a play with a boy and a mouse and they said the word underpants enough times to send the audience into hysterics. I fought falling asleep many times because it was dark and I am very sleep-deprived.

I got to sit by Nathan and see what his world is like with his class. I think that is why his teacher asked me to go.

I suppose I need to get out of my box a little more often.

Gemma

We have returned from our trip to some very sad news. Our friend Gemma has passed away. Gemma was a beautiful little girl from Barcelona that we met in New York. She was very fun and affectionate and such a sweetheart. Her parents, Delors and Jordi, are wonderful people. We got to know Delors and Gemma very well and we are so very sad for the whole family.

We love you, Gemma

The party

First off- I big thank you for all the ideas for Julia's Birthday party.

Secondly - I have to admit that in addition to not having good party ideas - I also lack the desire to pull off most of them.

This was her LAST at home party. In the future she could have a couple friends over but no more official parties at home!

Lauren is next....so the misery is not over yet.

Anyway, it went fine. The kids started out by playing Cranium Hullabaloo. I picked it up a few weeks ago hoping it would be fun for a party and it was. We had fun trying it out the night before also.

We had some board games in the dining and room and the kids played some of those with help from some of the parents who stayed. Parents always get roped into helping at my parties due to all the activities Julia wants.

Forty minutes in the kids got restless. We decided to go ahead and get the pizzas and the kids were wandering in the family room so I got out Julia's Star Station (kiddie karaoke). It worked! The kids took turns singing and ended up running around and around in circles screaming. They were happy so I didn't care.

Then there was pizza, cake, presents and more running.

Not the best party ever but I think everyone had a good time.

Lauren

I just had to share.

Birthday party stress

Julia turned 5 years old yesterday! We had a wonderful family celebration at dinner last night but of course she also is having a birthday party. For years she has been talking about having her 5 years birthday at a inflatable bouncing play place because that is what Nathan did. She had recently shifted to wanting a Build-a-Bear party. I was more than happy to shell out the big bucks because the last few years she had craft parties at our house and I would rather spend money on a party somewhere than have to clean my house and entertain little children for two hours .

You can imagine my dismay when Julia announced she wanted a party at home this year with crafts and board games. I asked her several times hoping she would change her mind but she didn't. We went out a few weeks ago and got party supplies and invitations. The party is Saturday and the crunch is on.

I did knock one item off my list - putting away the rest of the Christmas decorations.

I thought very hard about cleaning the bathroom but decided that it will be just as messy on Saturday and I need to wait.

I still need to pull out our games and make sure they will be sufficient.

I need the dreaded party favors. I REFUSE to do gift bags and plastic stuff. If I can find one good craft that they will enjoy keeping that will be their favor. I have told Julia that it will be far more game than crafts and there may be no crafts.

I suppose I should come up with some party games for those kids who might have no interest in board games. I always hated pin the tail on the donkey and I am anything but creative so I am not going to be able to come up with anything.
I feel faint at the thought of entertaining these kids - especially with some if their moms bearing witness.

UGH!!!!

Meanwhile I am using the coping method of not doing anything, hoping that procrastination will be the best motivator and even force creativity upon me.

Wish me luck.

Insurance stupidity

Nathan had an MIBG scan last week and has a CAT scan tomorrow. His oncologist's office calls the insurance company to notify them about the scans.

Both times the oncologists had to get on the phone to get the scans approved. For the MIBG scan the woman couldn't find the scan on her computer screen. She said the if she couldn't find it on her screen it must not be able to be approved. Nevermind that Nathan has had this scan a zillion times with this same insurance. A talk with the medical director b y the oncologist finally sorted that one out.

Today his doctor told me he had to get on the phone with the medical director to get approval for the cat scan. Since they are scanning so many parts of Nathan's body each part is listed as a separate scan. They did not want to approve so many scans at one shot. Hmm - should he go tomorrow for the scan of his abdomen, maybe do the chest another day and how about the head and orbits on a third day? His doctor tried to explain to the medical director that they needed the cat scan to compare to the MIBG scan. Apparently the medical director then asked what a MIBG scan was......

Geez - I am not so impressed by these people.

Disneyworld

We've decided to take the kids to Disneyworld. We went there two years ago for Nathan's Make-a-wish trip and they LOVED it! They have been talking about returning there ever since and they want to stay at the Nickelodeon Hotel. Those commercials they run on Nick pay off!

Anyway - we are unsure how long Nathan will feel good enough to enjoy a trip like that and so we are going very shortly!

I am hesitant to look forward to it since after all we have been through I wonder what the chances are that it will actually work out and we will be able to go. We booked a package and added cancellation insurance and so if we have to cancel it will be ok.

My parents will drive down and meet us there and my mom will be taking care of Lauren so the rest of us can have fun. It is not going to be a very fun time for her (Lauren that is).

We decided to just spend the money and pay off the credit card debt in the future but it looks like we will be getting some financial help for the trip which is wonderful.

Nathan might need to start treatment by then but I don't know what difference a week or two will make at this point. I think that we will just have begun figuring out what to do when we leave anyway. We can start when we return. I hope his disease cooperates and lets him feel good for this trip. He deserves a whole lot of fun!

Anyway - keep fingers crossed that this will work out. We NEED a vacation!
We are also hoping for warm enough weather to swim since the hotel has a waterpark at it. If it is too cold to swim outside the kids will be heartbroken. Luke thinks we will just have to buy us all wetsuits!

Negative six

Negative six degrees that is. It is a cold one this morning. I love extreme weather and so it is fine with me. Although as I listen to the furnace chugging along I can see the $$$. It has to pretty much run all the time to keep it 66 degrees warmer in here than outside.

Yesterday I waited for the bus for about 8 minutes in 3 degree weather. It was fine as long as I kept moving.

As I write this I can see my neighbor in his backyard (at 7:30 am). I can't imagine what has prompted that!

I hope you readers in central Illinois are not getting too much ice.

Back to School

By request......

This is a picture of Nathan before he went out to catch the bus yesterday.

He took the bus and I met the bus at school. I was glad I did because the bus was late due to snow-packed streets from the recent blizzards and our city's practice of not plowing neighborhood streets.

I dropped him off at his classroom and the kids were happy to see him.

After a full day with no phone calls I met Nathan at the bus. He seemed a little tired but upbeat. I didn't get very many details of how his day went but we had a nice conversation after dinner about some parts of his day.

He was happy to head off to school again today so I guess all is well.

I had calls from the school nurse and school counselor this morning but they were just checking in and making sure Nathan's needs were being served. They both wanted to make sure that I knew he could get some extra tutoring if he needed. I explained that my goal for Nathan was that he enjoy school and not him keeping up academically unless he is upset about being behind.

I have had to convey to several school people over the last few days that our hope for Nathan is to keep him stable and keep him in school for as long as he is able. It has gone unspoken, but I think, understood that once Nathan cannot attend school anymore he will not be coming back but that I don't expect this to be anytime soon. I have been impressed that I have not had anyone get audibly upset by this and that we are on the same page of dealing with the now and making school the best experience for Nathan that it can be.

Hang 10

I am not a surfer. I have never surfed in my life. However today, while driving alone and therefore able to actually think, I was thinking about the usual Nathan stuff. I was thinking about the decisions we are having to make about Nathan's treatment and how unsure we were that these are the right decisions. What we have been doing lately is a lot of going by our gut feelings.

Suddenly, an image appeared in my head as if I was on a surfboard riding the top of a wave and using subtle body movements to keep myself up there.

It captured how I feel about the decisions we are making. We are right up there in the middle of violent natural forces. We make subtle small decisions based on where we are right at the moment and sometimes they are directed more from within than from a lot of analytical thinking. I suppose when you wipe out while surfing there is a little second guessing that comes along with it but the focus seems to be more on the ride and the ability to stay up despite the terrible churning going on underneath you.

Somehow this makes me feel better. We are doing the best we can. We are trying to do the best thing for Nathan and for our family. Only WE know what IS best and that comes from within and not from the doctors or laboratories.

We know we are going to come down from the wave and eventually crash. Meanwhile we tilt and dive and have moments of perfect balance mixed with moments of lost control. Pure joy mixed with sheer terror.

Singing again

I finally got to go back to choir practice tonight after my three month absence. It was a wonderful thing! I even got to stay for the whole rehearsal since Lauren is no longer nursing.

Now - to make it to church on Sunday......we are expecting another foot of snow tomorrow and Friday.

Merry Christmas!!!

To all who celebrate Christmas - wishing you a very merry one! I hope you all have been able to spend the day with the ones you love.

As you can see in the picture - I got everything I wanted for Christmas this year.

Christmas tasks

I spent the evening wrapping Santa presents in the basement. Afterwards I went upstairs and spent time drawing up medicines in syringes to adminster to Nathan.

For some reason - doing those tasks back to back really got to me.

It just isn't natural.


p.s. Believe me - I am grateful that Nathan is at home. I am happy to be filling those syringes at home instead of at The Ronald or not filling them at all at the hospital

Killing time

I have nothing of interest to say because I am just sitting here waiting for Tuesday to get here. On Tuesday I get to get on a plane and go get my guys from NYC.

Meanwhile I have been doing mundane things like cleaning, surfing the net, listening to Christmas music, oh and taking care of the girls.

I have been selling a few baby items on Craigslist. Someone came over to buy a car seat base today. Julia and I were making cookies. The house was clean - the Christmas lights were on - Christmas music was playing the background and I was holding Lauren. I thought to myself that it must look like I am living some sort of ideal life. Me and my "two" children, nice house at Christmastime. Meanwhile - I am living a life no one would want to trade for. Well I guess I have to take that back - I know plenty of angel moms who would trade me....one more day with their child alive...

Still - it always reminds me not to assume things about people. Occasionally I will see a family I do not know - with a boy about Nathan's age and I think to myself "they have no idea how lucky they are" and then I realize that I have no idea what their life is like. Perhaps they have already lost a child.

Can't judge a book by its cover, I guess.


p.s. I actually DO judge a book by its cover...so that saying doesn't work for me. I totally glance at the cover first and make assumptions about the book...isn't that what the cover is for?

My Girls