Monthly Archives: August 2008

Rebuilt

One of the last Lego projects Nathan built was this Lego Star Wars toy. He had very little strength and sitting upright to build it left him in immense pain after each building session, but he was determined to build it, and he did. He finished it on July 3, 2007. 26 days before his death. There are worse pictures than this but I didn’t have the heart to post them – in this one he looks not quite as close to death as he was.

Anyway – It has been in a box that it didn’t really fit in on Nathan’s bunk bed and had been slowly taken apart a bit. When Julia moved up to his bunk I put the box in my room. I finally got a container it would fit in and spent a while Friday afternoon rebuilding it. I kept thinking that many of those pieces were last touched by his hands. Miraculously – all the pieces were still there and it is now complete again. It felt good to do that.

Advertisements

Little Lauren

A few of you asked about Lauren’s size. I decided to measure her since she hasn’t been to a doctor in many months (yay).

She is 35 inches tall and 24.5 pounds (at 2 years 9.5 months). At her two year old check up she was 21 pounds and 33.5 inches. She is 8th percentile for weight and 34th percentile for height. At two she was less than 1% for weight and 50th % for height. So – she is growing.

She doesn’t look skinny – just thin. She is slowly catching up to Julia,but Julia has been growing lately. The way she is eating she will keep at it, too. She is 49 inches and 49 pounds. She has had the same weight as height for at least a year, longer I think. That puts her in the 55th percentile for weight and the 83rd percentile for height.

Back to Lauren – she is now not the smallest kid in her baby ballet and is starting to look more like a little girl than a toddler.

Oh – and don’t call her LITTLE. She may be shy when strangers talk to her but if a stranger dares to call her little she will quickly speak up and say ” I’m NOT little!”

Poor planning

I went with Julia after school to the orientation for her grief group. It was pretty useless since we did it last year but it was mandatory.

Hospice has more than one floor in the building. The child grief therapy room is a converted patient room on the in-patient floor.

I have been thankful many times we were never in-patient there (though maybe some things would have been better). Julia has had a notable glimpse of a dying patient during her time at the group in the past.

Tonight I sat at orientation next to a woman who had lost her husband four months earlier. We were on a different floor at the time. She mentioned her son was upset when they pulled up to the building but felt better that they went to a different floor. When we finally went down to the fourth floor where the kids room is she was in tears.

If that were me – I don’t know if I could have come back there. I can only imagine the memories flashing through her and the emotions she was feeling. There are two elevators and a father made a comment about going the long way around when he got off of one set of elevators. he didn’t have to add that it was in avoidance of glimpsing the room his wife died in.

It just seems to me that they could have foreseen how difficult it might be for parents and children to have to come hang out right by the room their loved one died in.

My cuties

 
Posted by Picasa

Heavy heart

I found out earlier this week that Nathan’s oncologist has been forced to resign by his partner due to a medical condition. This was very upsetting to me. I admire, like and respect him so very much. I immediately suspected why and when I got home I googled the symptoms I had been starting to see near the end of Nathan’s treatment – hand tremors and shuffling gait. I found out today that I was right and that he has Parkinson’s disease.

I am just sick about this for many reasons. He was a wonderful doctor to Nathan. He always spoke to Nathan in a way that made Nathan feel informed and included about medical issues. He teased Nathan in just the right way to bring smiles. He ALWAYS put Nathan’s well-being first. Every medical decision that was made was considered first in light of how it would affect Nathan, as a child, not just as a patient. He was always willing to take as much time as I needed to answer my questions. When explaining medical things to me – he would err on the side of being too techinical with me rather than answer my questions too simply. He never showed frustration or annoyance with my many questions as an intellgent, googling lay-person. I am so upset that future cancer kids and parents will no longer benefit from his excellent care.

I can’t begin to imagine how he is feeling right now. I hope his being forced out was really necessary and not politics or greediness on the part of the practice. I don’t know how old he is – I do know he has one child in college and the other in high school. He is not an old man and he was not ready for retirement.

I am going to write him a note. I am not sure exactly what I am going to say but I hope I will be able to convey my deep gratitude and respect for him as and doctor and as a person.

Brrr

It has been raining for 2 days straight which is VERY unusual weather for us. I am half tempted to turn the heat on but can’t do it in the middle of August.

Check out my desktop weather tool – It is currently 9:00 am.

Oops

This afternoon Julia and Lauren were playing and I put my iPod on and was reading a recipe in the kitchen. After several minutes I looked up and saw Julia in the family room with tears streaming down her face. I hit pause on my iPod and asked her what the matter was. Sobbing, she asked me why I kept ignoring her and wouldn’t answer her.

I pointed out my iPod and she got over it but I was surprised at how upset and hurt she was. Poor thing.