Monthly Archives: January 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.


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.


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.


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.