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

 

Instinct

I believe that if you are a parent your strongest instict is that to protect your child. What parent would not trade their own life for the life of their child?

That is why I just can't seem to figure out how a parent stops fighting for their child's life. If there is the slightest hope that your can save your child's life, how can you not at least try?

What about prolonging your child's life? Here is where the waters get muddy. Your child is terminally ill. To what lengths do you go to prolong your child's life? After all, does not each day bring a new day where a new teatment may be discovered? Isn't each day precious?

Several months ago I watched the documentary, "A Lion in the House". It followed families of children with childhood cancer. On more than one occasion in this documentary, the lengths to which parents went to prolong their child's life were questioned. They were questioned by doctors, nurses and even other family members. They were criticized for causing more pain and difficulty for thier children in their final days. One father took his daughter in to get chemotherapy on her final day against her mother's wishes. Another father fought the doctors who wanted him to sign a DNR on his son.

These other people clearly wanted to save the child from pain and suffering. These parents wanted to save thier child's life. I don't blame them. How can a parent let go? It is a lose/lose situation. There is no feeling good about any of it. When the child dies the parent wonders if they should have done more or they wonder if they should not have put the child through so much.

I don't know how I am going make the decisions I am soon to be faced with. We have already gone down a road we swore we wouldn't. In a last big effort to save Nathan's life we have ended up with a 6 week hospitalization and three months away from home. The doctors had no idea that this would happen and if we had known it would we would not have chosen to try this treatment.

Parents just shouldn't have to make such choices in life. It sucks the soul out of you.

Sick

I am sick. I am sick in all ways that a person can be sick. Physically, I have some kind of virus that Lauren gave me that involves a fever and a cold. Mentally, I am in a very bad place. Here I am over a thousand miles from where my son lays in a hospital bed. My stomach feels sick. I am sick with fear. I fear that he will not come home in 10 days as planned. I fear he will get an infection with no immune system to fight it. My heart is sick during this holiday season with the likelihood that this will be Nathan's last Christmas.

I am sick - and there is no cure.

Checking in

I have been neglecting the blog and I actually have too many things running through my mind that I want to put here. It is currently well past my bedtime and so I am afraid tonight will not be a good time to sort through them.

The girls and I arrived home yesterday after spending almost 3 months in NYC. It was like some kind of out of body experience for me today to be doing the suburban preschool drop-off thing in my minivan after months of walking the streets of NYC and spending every day in a medical facility. It has my head spinning.

More blogging to come soon....I hope.

Day job

The day hospital at MSKCC has a number of "session assistants" on staff. These seem to all be recent college grads and it is an administrative job where they keep the flow of patients moving from the various places they need to be (fingerstick, exam rooms etc). I have a particular favorite session assistant because she goes out of her way to be helpful and you can tell she genuinely enjoys the kids. To get things done it this very busy clinic you have to be proactive and so I am always asking her to call the nurse to see if Nathan has orders for this or that. If you don't do that...sometimes you sit there for hours. Anyway, she always seems happy to help even if I feel like I am harassing her!

I recently found out that she is a singer/songwriter. I went "home" (the Ronald) and googled her and she has a new album out and a video. She has a very nice voice. I wish there was a little less synthesizer but I am sure that using the synthesizer is a cost-efficient way to go when you are funding an album.

Funny to learn what people's other lives are. I hope she find success in her music career.

Sarah Ferguson: Put me on 'Dancing'

There's MY princess, Julia - black dress and reddish hair .

I just can't think of a good title for this entry

Those of you who know me would probably say that I am very even tempered and fairly calm. I don't get excited about things and I keep a cool head about things others might get flustered about.

So - you will know that things are not good when I tell you that I broke my computer tonight.

My computer is old and crappy. It was barely working. I would have had a new one if I was in Colorado but have been waiting until I got home. Tonight, it started giving me shit as I was trying to write an email to Nathan's doctor asking him to let Nathan out of the hospital even though it is against all the policies and procedures they have.

So - I gave it a good thump with my fist.

It still didn't behave itself - it froze a little and then was not letting me do what I wanted.

I pounded on it a little more with my fist and now it is toast.

I truly had to restrain myself from putting it on the floor and jumping on it. The thought of wrecking the computer makes me smile and feel giddy. That computer has been such a DOG and pissed me off so many times and I am so pissed off about so many other things right now that I am itching to pound the thing. If it didn't have its hard drive in it (which I am hoping to later recover some files from) I would totally beat it up and enjoy every minute of it.

Oh - and there is also the problem of the six year old in the hospital bed next to me watching me pound it and me setting a very bad example for him.

So - now what do you think of me?

I keep telling people - one of these days I am going to crack under the strain of it all. It's not happening yet but every day it seems more feasible.

edited to say that I am posting this from Luke's computer - which is having a sticky "E key" lately but is otherwise an obedient computer and I promise I will not abuse it

It's in the details

Nathan is currently inpatient for fever and neutropenia. We have spent time hospitalized in 4 different hospitals and our current hospital, has the best peds floor...hands down. The unit is about 3 years old and you can tell they had a lot of input from both parents/caregivers and nurses. Some of these details are very small but can make a big difference in parent and patient happiness.

Here are the elements that make it great.

1. Fully dimming night lights low on the wall by the parent bed/chair. You can actually read or use the computer when your child is asleep instead of sitting on the floor outside the bathroom door with a crack of light coming through.

2. LAN ports all over the room to get online with. Connecting with the outside world keeps parents sane and also lets the patients get online to help entertain themselves.

3. A locking cabinet for the family to use in the room. It is good to have somewhere to lock up the laptop if you are heading to the playroom.

4. Flat panel TVs for each bed with a DVD player and FULL cable. The shared rooms at our home hospital have one TV for two patients to share. How the heck is that supposed to work when you have kids aged from 1 - 18 and parents having to decide what to watch.

5. 2 window blinds - 1 to block out light and the other to let it some through. It sucks to sit in blackness during the middle of the day because your child wants the blinds closed. I find I am able to pull up the darkening one a little and get a small amount of daylight. I usually do this while he is not looking, in small increments, so he doesn't notice.

6. Parent menus. One of the hardest thing for a parent to do is find a way to feed themselves when they are with a child at the hospital. Here, there is a menu for the parents and when you call to order your child food you can order some for yourself as well.

7. A room door with full panes of glass in it that has blinds for all glassed areas. I can't tell you how much I hate being stuck in a hospital room with a closed windowless door. I like being able to see people walk around out in the halls. I feel much less claustrophobic. However, I have been in rooms where there are no blinds on the door or only one of the panes has a blind and at night so much light pours in that you can never really get into a good sleep.

8. Thermometers at every bed. I can't tell you how many hospitals or clinics I have been in where there is a never ending search for a tympanic thermometer. I was in the PICU of a very good hospital and they had 2 thermometers for the whole ward. I get so sick of watching the nurses or techs scramble for them.

9. Window for every bed. In shared rooms if there is only one window the curtain gives each patient half a window. Other rooms have at least one window per patient. There is nothing worse that sitting in a shared room on the "door side" of the room with the curtain drawn and the window on the other side of the curtain.

10. Ability to use cell phones on the ward. I know cell phones can interfere with some patient monitoring equipment but whatever they use here they do not have a problem with cell phone use and I can actually call my husband for free whenever I want.

11. Non-fluorescent wall light. After a while the fluorescent room lights can drive you mad. There is a regular, incandescent light on the wall that is bright enough to light the room.

12. Showers in the parent bathrooms. The ability to get clean without leaving the hospital is a very nice perk.

13. Washer and dryer on the unit for parent use. Many parents are basically living in the hospital so they can actually do their own laundry while they stay with their child.

14. Parent kitchen. The kitchen has a fridge and microwave for parents and a drink dispenser and most importantly a coffee/hot drink machine. No urn of coffee that has been burning all day. No feeling guilty because you have to ask the nurse to bring YOU a drink from the secret juice supply. There is even a small table for you to eat at if you wish.

15. Parent lounge. A no-kids room with comfortable chairs and a window to get away and clear your mind for a few minutes.

16. Enough pillows and blankets to go around that the parent can actually have some to sleep with. I have slept many a night without a pillow and blanket at hospitals. They never seem to have enough and it is such an easy way to make a parent comfortable.

17. Chair/bed that is actually comfortable and doesn't separate while you are trying to move around on it. What more can I say about that?

18. Room chair with footstool. They actually have a little footstool for the non bed/chair chair. When sitting in the hospital room all day it is nice to be able to put your feet up after a while.

19. Playroom volunteers who will come and sit with your child so you can leave the hospital or even just take a break from your child for an hour.

20. Room doors that open and close quietly. I have been in so many rooms that the doors make a racket when you open and close them. Forget sleeping through a vitals check in the middle of the night.

Nice views

First off - a view of Nathan who seems to be feeling alot better this morning.



Then - some views out the hospital room window. We are spoiled by the views out the hospital room windows in Colorado Springs but this view isn't half bad.

Rare allergy

The other morning I came to the hospital and Nathan was just waking up. He suggested I open the blinds. I opened them but it was too bright for him.

He said to me: " Mommy, in the mornings my eyes are just allergic to light"

I guess he is kind of right.

Walking - the video proof

I previously mentioned that Lauren is walking now. I finally caught her on film with my camera phone today. That's why the quality is so poor.

Fumbling in the dark

So - here at the Ronald we have two twin beds pushed together and one end table which is next to Luke's bed. This means my glasses and other things I am using in bed are put on the floor when I go to sleep. This also means I have no clock next to me.

The other night Lauren woke up and I needed to find out what time it was so I could see if it was too early to nurse her. I reached down off the bed groping for my glasses.

Instead of my glasses, I produced the lovely pair seen in the picture, If it hadn't been 4 in the morning I might have laughed.

Walking

I have failed to mention that Lauren has started walking. She will take off and walk a few feet and then sit down. It is by no means her primary mode of getting around but it will be soon. She will be a year old in a few weeks. Eek! my last baby is not going to be a baby for too long.

This reminds me...

I was having a talk with Nathan about more serious types of things and I asked him if he was worried about anything. He said that there was one thing he had been thinking about. He said that if I had another baby he was worried that there would not be a bedroom for that baby. I told him not to worry because his Daddy and I were not planning on having any more babies. That was not enough for him. He told me sometimes it could happen anyway. I told him not to worry - that doesn't happen very often to people (little white lie). Geez.

And no - I am not pregnant. Not even possible.

TV free life

Normally I watch alot of TV. That is what I do with my evenings. The new season started in September and so there are alot of shows to watch.

The first night we were in the Ronald McDonald House I tried to watch TV on a little handheld TV. The reception and sound were too crummy. The next night I tried to have the TV on quietly but it was too distracting for Lauren and Nathan to sleep with it on.

So - I haven't really watched any TV (beside hours and hours of Boomerang and Cartoon Network) since before Labor Day.

I don't miss it nearly as much as I thought I would. I wonder about some of the shows. I know my TIVO will contain a few episodes (but not all of the weeks I have missed).

I DO miss having a life after 9:00 pm. Sitting in a dark room reading a book with a booklight or using my computer in the dark is not my idea of fun.

That said - I fully intend to go back to my TV watching when I am back home again.

If this is 49, what does 50 look like?

I am blogging a dream....more for my benefit than my readers I think.

I walk into a hotel with some wealthy person. The people in the hotel apologize profusely that room 50 is not available but take us instead to room 49. We walk in and it is palatial. The floor and walls are marble with the ceiling several stories high. The main room is the size of a football field. There are stairs everywhere. One stairway leads past a very fancy swimming pool. We keep touring until we find we have exited to the street. We are in NYC and we had left our Maclaren stroller while we have been inside. Someone has taken ff the wheels and is replacing them with plastic wheels the same blue color as the stroller. There is apparently quite a bustling black market for Maclaren stroller wheels. We catch him in the act and he puts the wheels back.

The dream ends there because I am awoken by a crying baby at 4:30 am.

Anesthesia Joke

Nathan: I know why it is called propofol !
Me: Why?
Nathan: because when they give it to you it makes you FALL asleep and then you wake up and try to walk and you FALL down.

I had Nathan tell the anesthesiologist who said it was her first propofol joke. It is cuter coming out of Nathan because he says "purplefall" instead of "pro.poe.fall"

Gravity

How does one explain the concept of gravity to a child?

Nathan got platelets on Sunday. Here in NY they do not use IV pumps for platelets since they do not want to lose any of them. They actually used that IV rack hanging on a track on the ceiling. I have never seen one of those used in all these years.

Nathan wanted to know how the IV could work without a pump so it was time for a lesson on gravity.

I'm starting to get sick of all thing medical (no pun intended). I guess living at the Ronald McDonald House doesn't let me get away from it like I do at home when I can fell that I have a normal life from time to time.

I had to share...

 

Goodbye Nevaeh

Luke and Julia got home from New York this afternoon. He told me I had a message from a fellow NB mom to call her. She and I have been chatting now again since both of our children have relapsed and we live in the same town.

A few weeks ago she told me they had decided not to pursue further treatment. I asked her what led her to be able to make that decision because it is something I have been thinking about for the future. She was very open and shared with me all the reasons.

So - I am still in NYC and so I went online to view today's paper and was dismayed to see Neveah's obituary. When I heard I had a message I suspected it meant she had died but at the same time I wasn't expecting it. I was far more upset than I had anticipated. Her funeral is tomorrow and so I will wait until Thursday to call. I haven't a clue what I will say.

I wish I could be at the funeral and give her mom a hug.

I have never been to a funeral. Can you believe that? I have now missed two funerals that I thought I would attend if the day occurred. I fear that my very first funeral will be that of my child...in fact it almost seems destined to be that way...

To close - here is her obituary

Reality sets in

I am starting to get a little depressed about our long haul in NYC. I mean, we had a days notice to get here and I had a return ticket in 10 days. Now I am here at least through the last week in October and if things go well - into November.

It is great that Luke and Julia are here. It will be hard to see them leave. Luke was able to pack more clothes for me and Nathan but I hadn't quite looked at the calendar to see that I could be here in November. I guess I will need more than 3 long-sleeved shirts.

I got some retail therapy today at an Aerosoles store at least. Gap is in my future as well. Lauren has so nice new duds courtesy of Baby Gap. I would not have spent that much on her (or me) at home but I am feeling entitled. Plus there is that whole thing of the more money you are spending the easier it is to keep spending.

I feel like life is going on without me at home and that I am in suspended animation. How will I ever get back into the swing of things? I already feel like some kind of alien among all the humans and when I get back it is really going to be exaggerated. If I do get home the first week of November it will most likely be for only one week. Part of me thinks that will be harder than staying. It helps if I try not to think of home.

So - do me a favor and relish the school drop-off and grocery shopping in a store with normal size carts for me next week.