Monday, January 29, 2007

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.

Tuesday, January 23, 2007

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.

Monday, January 22, 2007

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.

Thursday, January 18, 2007

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!

Saturday, January 13, 2007

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.

Thursday, January 04, 2007

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.

Tuesday, January 02, 2007

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.

Wednesday, December 27, 2006

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.

Monday, December 25, 2006

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.

Saturday, December 23, 2006

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

Saturday, December 16, 2006

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?

Sunday, December 10, 2006

My Girls

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Thursday, December 07, 2006

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.

Thursday, November 30, 2006

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.

Wednesday, November 22, 2006

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.

Friday, November 17, 2006

Tuesday, November 14, 2006

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

Saturday, November 11, 2006

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.

Friday, November 10, 2006

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.

Wednesday, November 01, 2006

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.

Friday, October 27, 2006

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.

Thursday, October 19, 2006

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"

Tuesday, October 17, 2006

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.

Tuesday, October 10, 2006

I had to share...

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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

Friday, October 06, 2006

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.

Saturday, September 30, 2006

Up on the roof

These pictures were taken by my cousin's not-husband on the roof of their home in Brooklyn.

Nathan thoght it was very cool up there.







Thursday, September 28, 2006

In the trenches

So - Nathan has been in the hospital for three nights. Two of my friends are also in with their children. I know them from "way back" which is never a good thing in the cancer world. They haven't escaped this life yet either.

H is the same age as Nathan and has been fighting for 4 years. They slowly chipped away at his disease until a few months ago he was "clear" for the first time since diagnosis. Eight weeks later scans showed the cancer was back. He had a round of chemo and then got a fever and his blood counts haven't come back up and they have been in the hospital for 2 weeks. He is going to get some stem cells on Monday. His mom, G, is great. When we first came here she introduced herself to me and then took me on a tour and gave me the lowdown. They have an apartment in New Jersey because they mostly live here and occasionally get to visit home and Dad. Her mom is here with her constantly to help (thank goodness!). H is an only child. They were trying for #2 when H was diagnosed. G says she can't bring herself to have another because they have been in this fight the whole time and she is not sure how she will manage being pregnant and caring for H. H will probably get this same treatment as Nathan. G was excited to see the trial start. I lent her my copy of the study protocol for some light reading.

J is a teenager. He was doing the cold antibodies at the same time as Nathan back in 2003. His Dad, D is his primary caregiver while his wife and daughter are at home. J and D also have primarily lived in NY for three + years. D is so friendly and caring. D &J are always going on adventures. D took Nathan and I out one Saturday that we were here in 2004 and we went to Fire Island and some other places. Basically - we just escaped the city and the drudgery for awhile and it was so wonderful. J has never been clear. They have made progress at times and then things have gotten worse again. A few weeks ago they were actually at home. The doctors called J to come to NY to start the hot antibody study. D and J had been waiting for this trial. It has great promise and was the only thing left for them to try. J was scanned and they found him to be ineligible for the trial. They are still in NY doing some other chemos but are not given any hope for much time left.

So - Nathan just did this trial J was waiting for. D has been telling me how great it is that it is Nathan doing this first. Meanwhile - it should have been J and the trial basically just didn't get going soon enough for J. He keeps asking me if I am just so happy Nathan got the treatment. Of course I am but how can I look him in the eye and be happy? He came in to talk last evening while Nathan was sleeping. He has been told once again that they will do one more round of chemo and then they should go home. Being "sent home" is something all cancer parents fear. I can tell D just doesn't want to go home. He talked of going off on more adventures rather than going home. His wife is at home and is angry and her anger is directed at D. She has taken very little part in this whole medical journey and has been the breadwinner. The separation between them is total and complete. When I look in D's eyes I can see the pain and anguish of this whole situation. I worry about him. All the while he is asking how he can help. He is chatting and laughing but his eyes can not hide the pain.

I am hoping to climb on out of here in a day or two - but I cannot really leave this place or the people in it behind. My heart is heavy.

Tuesday, September 26, 2006

Torn in two

I knew when we decided to have another baby there could be times I would have to choose between caring for one child over another.

At the time we decided to have Lauren and she was conceived Nathan had not yet relapsed. We knew things would be difficult if he did.

We were pretty lucky that even though he relapsed twice we could juggle what we needed to juggle.

This is the first time I must choose between Nathan and Lauren. Nathan in inpatient and visitors under 12 are not allowed on the floor. So - I can either be with Nathan or with Lauren but not with both.

Today I was mostly with Nathan except for when I needed to nurse Lauren.

Near the end of the day when I was holding her and had to give her back to Kathy ( my mother-in-law) she had a death grip on my arm and cried when I pried her fingers off. It was enough to break my heart. She screamed the whole time I took a shower tonight back at the Ronald McDonald House. I need a disclaimer here that this is not a reflection on Kathy - but merely *not mommy*.

I guess it could be worse. It doesn't matter so much to Nathan who is caring for him. If he cried when I left him that would be torture.

However - I am his primary medical caregiver and he is about to undergo an untested medical treatment and I feel the need to be with him and working closely with the doctors and nurses.

So - this is how it is.

It is hard.

Friday, September 22, 2006

Excited?

So - most of you know that I am in NYC with Nathan awaiting a new trial. Nathan will be the first patient on this trial.

I have been told it has promise.

I saw one of the nurse practitioners briefly and she asked if I was excited. She then saw my face and realized that was not the right emotion and I explained I was very happy Nathan was getting this treatment.

Later we saw the peds fellow and when he learned Nathan was #1 he got excited and asked what did Nathan want for being #1 - a trip to the moon? He obviously also thought that this is very exciting.

So - I guess it is a good thing that the medical professionals are excited about this trial. I am starting to realize what high hopes they have. His doctor even mumbled something about "if Nathan does not have a complete response after the first round but can't continue....." Really? Do they think it could be THAT effective?

I have no expectations. I'll take no progression. I hope he can have more than one round. Those are my hopes right now.

Tuesday, September 19, 2006

Sunday, September 17, 2006

A normal week?

I am on the cusp of what could be a "normal" week. Nathan is slated to go to school all week. Julia will be at afternoon preschool Mon - Thurs. This is my first taste of what my life could be like with a 6 year old, 4 year old and 10 month old.

So - of course it can't all be normal. There will be a quick doctors visit that will cause Nathan to miss about a half hour of school on the the days this week. We may also learn when we are returning to NY and have to get transportation, lodging and personnel worked out.

Still - I am looking forward to it. Shall we see what steps in to change it?

Tuesday, September 12, 2006

Twenty-one

Just some NYC strangeness.....

This morning I went for Dunkin Donuts. I witnessed a streetsweeper driving aggressively through the traffic - swerving in and out of traffic - very odd.

On the way home I was out of place as one of the few people on the street not dressed in a micro-mini school uniform skirt. I don't get the whole school uniform tiny skirt thing - aren't they supposed to be modest?

Later in the afternoon while in Times Square attempting to walk to a restaurant we had to squeeze by a crowd of people on the sidewalk screaming at the MTV TRL broadcast in the building next to us for Justin Timberlake.

Lastly - while spending three hours in the playroom of the hospital today I met a child with the weirdest name ever. There was a little girl whose name was twenty-one. I kid you not.

Monday, September 11, 2006

Unsettled

I am having this urge to just go home. I don't feel good about being here. I want to go home and pretend this all isn't happening.

Those of you who know me well - know that I am not that type of person. I am a realist through and through.

I have been having weird thoughts. I passed a window of a very expensive chidren's boutique today and had this overwhelming desire for Julia to have the very expensive shoes in the window. I have no idea why.

It is so hard being here but having no "real" plan. Thank goodness we are taking Nathan over to the hospital tomorrow to see his doctor - hanging out here with all of this over our heads is unsettling.

Thursday, September 07, 2006

In the city

Four out of the five of us are now in NYC.

I will skip talking about all the medical stuff - you can find that on Nathan's page. All that stuff just makes me feel ill.

So - we are staying the a very beautiful apartment of friends in the city. The have two apartments and the lower one is office space and spare rooms. It is so wonderful to be here and not at the Ronald McDonald House.

I find it disorienting and surreal to wake up in Colorado drive to the airport, and then find myself walking the city streets of Manhattan all in the same day. It couldn't be more different a world.

Here is a picture I took out of one of the bedroom windows. It is looking across Central Park.


This picture is also taken out of the same window at a different angle. There was some sort of photo shoot taking place on the rooftop.

Sunday, September 03, 2006

Up and down

Not only my life - but also my internet. The problem started on August 1 - the day our internet provider was officially bought out by another cable company.

So - while there is a window of access this morning I thought I should post something here.

How about some pictures of my little 9.5 month old sweetheart? She was at the doctor on Friday and she only weighs 15 pounds 6 ounces (less than 5th percentile). Her head and height are aroung the 50th percentile - so she is pretty slim. No worries though - she is breastfed and the charts are for formula-fed babies. She is also doing everything she should be.

I just took these pictures - too much flash....


Tuesday, August 29, 2006

A Pardon

Good news! My car has received a pardon. It was a $16 part that broke. $200 dollars later (some other maintenance done) the car is home.

Monday, August 28, 2006

Is this goodbye?

My car broke today while I was driving Nathan home from his echo/EKG. More precisely it broke down right after we exited Dairy Queen on the way home. So - at least I got my blizzard first. My dad came to get us and made a comment about this being just another day in the life of Susan. I really do need to play the lottery - perhaps I am due for some good luck.

I think this may be the last straw for the Beretta. It was a college graduation present from my parents in 1994. It only has 93,000 miles on it though. However, it is not even worth a couple of hundred dollars so there is a limit to what we are willing to put into it.

So - it has been towed to the shop and we will see how much it will cost to fix it. I will be a little sad if we get rid of it. I've had that car since before I even met Luke.

Sunday, August 27, 2006

Sobering stuff

I wanted to post - but my thought are all over the place.

We are waiting to hear when we will go to New York for Nathan's scans. This time next week we could be there but as of right now we haven't a clue. I hate how last-minute these things are.

There are three senarios for what will happen.

1. Nathan's scans are the same worse than at relapse. They have nothing to offer him. We come home. Mild chemo?, Hopspice?

2. Nathan's scans are improved. They have a trial for him but he needs to wait for an opening so we come home for a week or two and go back.

3. Nathan's scans are improved. He starts a trial right away. We are there for many weeks.

So - when will come home? What will we be doing? All unknown.

There is another child with relapsed neuroblastoma at Nathan's clinic. She is friends with my hairdresser and we talk on the phone from time to time. I talked to her yesterday. They have decided to stop treatment on her daughter (who is five). She has called hospice and been to the funeral home. We talked about how she came to the decision and was actually able to make it. Her answer was that is was prayer. For now, her daughter feels great and is able to run around and ride her bike. They think she may make it to Halloween but doubt she'll make it to Thanksgiving.

I just keep hoping that it is a long time before we are where she is....

Monday, August 21, 2006

Baby you can drive my car

So - we have been dealing with the same group of doctors and nurses for over three years now. We are so lucky because these are a great group of people.

There is a nurse at the hospital that used to work in the clinic occasionally and also is one of the few oncology nurses on the pediatric floor. We have always liked her.

She was Nathan's nurse a week ago when he was inpatient for fever and neutropenia. This is the day I realized I had shingles. I was sitting by Nathan's hospital bed surfing google images for rashes. When I saw a picture of the shingles rash and also saw a map of where it commonly breaks out I started freaking out. When she came into the room I showed it to her and she went and asked a doctor over at the PICU who thought I should get it looked at. I had to go RIGHT AWAY. I was so freaked out about giving Nathan chicken pox and I just couldn't wait for an hour for Luke to get there. I decided it would be fine to leave Nathan alone for a little while. He is so used to the hospital and the nurses and was feeling just fine. I was ready to leave when it occurred to me that I had no car and urgent care was about 2 miles away.

I told his nurse I wouldn't be leaving right away after all because I had no car. Then, I realized I could call a cab and so I did so. I went to the nurses station to tell her that I was leaving right away after all and she offered me her car. She repeatedly offered and I almost took her up on it until I realized her shift was almost over. She said she would catch a ride home with another nurse and then get a ride back with her early the next morning. She had told me earlier that she had the next three days off and so she was actually offering to get up and come into the hospital on her day off just so I could borrow her car. She offered a few more times but I refused and said I had a cab coming anyway and I thanked her profusely.

That is a good example of how caring and just plain nice Nathan's nurses are.

If I ever change careers - nursing is the first career I would choose. Nurses really do make a difference in people's lives. How many other vocations can do that?

Saturday, August 19, 2006

Letter

So - I wrote a letter to the editor concerning the column about the woman and her house in disrepair. I wrote it at 10:00 at night so it is neither as eloquent nor as biting as I would have preferred. Heck - I am just not a writer.

Either way - I am pleased to say it was published. I hope one of those neighbors reads it and will feel even a little bit ashamed.



ADDING INSULT TO INJURY
Gazette should have passed
on reporting woman’s woes
I am appalled at the Sidestreets column in the Aug. 17 Gazette, “Years after neighbor’s death, good will sours as house falls into disrepair.” Since when is it considered newsworthy that someone has had trouble keeping up their house after a horrible family tragedy?
The tone of this article seems to indicate that Han Lee should be “over” this tragedy now that five years have passed. These neighbors should be thanking their lucky stars that they have not had such a tragedy occur in their lives and they should continue to offer their assistance if they are so disturbed by the disrepair. It disgusts me that these neighbors were willing to publicly air their petty grievances and I simply cannot believe The Gazette published this column.

Thursday, August 17, 2006

I am so steamed

Our local paper has a weekly column about neighborhood issues. I am so angry about the column that ran today. I will paste it below since it is hard to link to this paper and then comment on it below.



When masked men burst into the Valli Hi Liquor store on Memorial Day 2001 and shot to death owner Hyung Lee, neighbors rallied around his widow, Han.
Some mowed the grass for the South Korean immigrant, who witnessed the slaying of her husband and was threatened with death along with their 16-year-old son.
In the following weeks, neighbors offered to do chores around the house, such as fixing the sprinkler system and repairing the garage door, recognizing the grieving Han was under severe stress trying to learn the business and work the store six days a week while raising her three boys.
But five years later, some residents in the Gatehouse Village neighborhood of Briargate are frustrated with the condition of Lee’s house.
One of Lee’s garage doors is broken. The yard is patchy weeds and mostly dead grass, unlike the tidy lawns of many neighboring houses. A washer and dryer have sat for years in the backyard, visible from the shopping center across Union Boulevard.
“The house is a disaster,” said Jose Carrington, who lives around the corner. “The yard is terrible. There is trash in the yard. Weeds. Cars parked on the grass.
“It’s terrible. And the whole neighborhood feels the same way.”
It’s so bad neighbors have moved away in frustration.
Current and former neighbors who were interviewed expressed sadness for Lee and the trauma she suffered. They were sympathetic that she endured the trials of three men arrested in the crime.
Some shook their heads in disbelief when one of the men, originally convicted of first-degree murder and sentenced to life in prison, won a new trial. And, like her, they were mortified when a jury in November acquitted the suspect and set him free.
They can’t imagine what it must be like for Lee, having to return to the scene of the murder, day after day, working long hours at the liquor store to support her family.
She gave a glimpse of her life at the sentencing of one of the killers: “This is not just a nightmare,” she wrote in comments to the judge. “It is our horrendous reality.”
Walt Damewood lived next door to the Lees for several years and recalled the horror of the events.
“It was so difficult for her,” Damewood said. “She was running the store; working long hours. The only day she had off was Sunday. And she slept most of the day.”
Meanwhile, Damewood said, the house deteriorated as the boys, now ages 13, 18 and 21, started causing problems in the neighborhood. Damewood said he had confrontations with the boys and their friends over noise and other issues.
“The kids went a little crazy,” he said. “Things started getting worse and it got to the point it felt a little on the dangerous side.”
So he sold his house and moved in 2003. At least three other neighbors, who declined to be identified, soon followed Damewood out of Gatehouse Village.
“It was frustrating,” Damewood said. “We loved our home. And our neighbors. We still have a lot of friends there.
“We tried everything to help her. It was so difficult. But the house was deteriorating. She was having a hard time controlling her kids. It was so hard to talk to her because English was her second language. We really felt bad. But we had to move.”
Carrington, however, doesn’t want to move. He wants to see the house cleaned up, the junk hauled away and the yard landscaped.
News of the neighbors’ comments shocked Lee, when contacted at her liquor store.
“I’m going to clean up the house in two weeks,” she said. “I called a fix-it man.”
In fact, the very next morning the front yard of the house had been transformed by Lee and her sons. She promised the garage door would be fixed soon, along with other repairs.
Still, she was surprised anyone paid so much attention to her house.
“People called the newspaper?” she said.
She spoke in a soft voice as she recalled the days after the shooting and the years spent in court, watching the trials.
“I had never worked before,” she said. “I had to learn the business.”
The demands and stress of the business caused her to neglect her home.
“It’s been very hard,” she said. “I’m working all the time here. Six days a week from 9 in the morning until night.
“I don’t know how to start the mower. My husband always did that.”
When Damewood and the other neighbors moved away, her situation got worse. “They used to help me,” she said. “The new neighbors, they never even talk to me.”
Carrington said he was aware the family had suffered a tragedy. But he had never talked to Lee or gotten involved. And to him, it’s no excuse for years of neglect.
“I feel sorry for them,” Carrington said. “But the house needs to be kept up.”


First of all - I cannot believe they ran this column. This poor woman has to be mortified.

What really angers me is the I think this article suggests that she should be "over" her husband's murder after five years and should now be perfectly able to take care of her house.

These neighbors.....I gues they have never had anything tragic happen in their lives. They don't understand the paralization that can come from such a horrible event like this. If they can't stand the way her house looks, why not continue to offer their help. No - they are just standing in judgment and moaning about how their life is ruined because they have to look at her house. How self-centered can they possibly be.

I am just disgusted.

Here is the other thing. This could be us in a few years. Until recently we had weeds and dirt in part of our front lawn. Our back yard is half weeds and dirt. Our house needs to be painted and there are rotting boards. We are fully aware of all of this but all of our energy and much of our finances are spent elsewhere. I don't know if any of our neighbors are saying these things about us - I hope not. If so - they can kiss my ass - That or trade places with me and have it so they are the ones with a kid with cancer and see if they can do a better job.

Is he kidding?

So - I have watched the TLC show Shalom in the Home a few times. I decided I didn't really like the host and decided that he was arrogant, but had nothing against him.

Well - now I do have something against him. Read what he writes about breastfeeding and its negative affects on the marriage.

Sunday, August 13, 2006

Shingles



I can't believe I have shingles! Can I please catch a break?

Wednesday, August 09, 2006

Dilemma resolution

I didn't go. Nathan went to the clinic and got his counts checked late this afternoon and his hemoglobin was 6.4. It should be above 12 so it was very low. He is going to Denver tomorrow and so can't have one then. So he and I went off to the hospital to get some blood. Luke came around 5:00 and I could have run to the school but I had Lauren who needed feeding. I also remembered there is a back to school night in a few weeks for the parents to meet with the teacher and the teacher will talk about the curriculum so I think I will just attend that. I still need to run over to the school and view the class list.

You guys had some good suggestions and I think I will try to meet with his teacher privately as well.

Tuesday, August 08, 2006

Dilemma

So - I have been trying to not let this blog be dominted by Nathan's situation - but I guess the reality is that my life is dominated by it and so I have no choice.

School starts next Monday. Nathan will not be going. He will be getting a homebound tutor 5 hours a week. It is our intention that he go to school whenever he is able. It is unfortunate that he cannot at least start school with his class so he can feel a part of it.

Tomorrow night is an ice cream social and meet the teacher night. The first graders are meeting in the classroom and I assume will be oriented about full-day school. I think it would be good if I was there. I think it would also be good if Nathan could go.

Here is the dilemma. Let's say Nathan was physically able to go. He should probably wear a mask. He may not be able to walk well - I might have to push him in a stroller. My god - would it be more harmful for him to go meet his classmates in that state? He is looking like hell right now. For him that is not the usual bald and skinny it is also the deathly pale/grayish pallor. The kids will probably be freaked out by him.

It is likely he won't be up to going anyway so it will all be moot. I guess I will go...I hope I can keep from getting teary - it will be terribly depressing to be there without Nate. So - maybe I won't go at all. I would like to meet his teacer though....