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.

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.

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.

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.

My three sweethearts

 

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?

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.

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.

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.

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....