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.