I took Lauren to the doctor today for her two year old check-up. She is the weight of the average TEN month old girl! 21 pounds. Her height is around 50th percentile. Her weight is listed as 1% because I guess 0% is not an option. Her doctor is not concerned because her growth curve looks good – it is just off the charts. She was 19 pounds at 18 months so she has gained 2 pounds in 6 months and is about and inch and a half taller (she is 33.5 inches). Her head is very small – that is in line with both Nathan and Julia as babies and toddlers. There is no concern about her head – she is speaking in complete sentences and has amazing comprehension. It’s funny – because when you look at her body it seems normal in proportion but that is normal for an older child. She has none of the chub that toddlers are supposed to have.
We talked about how pale she is and that it is probably just genetics but we did a quick toe poke to check her hemoglobin. It was just fine at 12.3.
Finally – a listen to the chest brought new news. Lauren has a heart murmur. Most likely nothing to be concerned about but “because she is a Gentry” the doctor (her words) wants a pediatric cardiologist to listen to it. We already have a pediatric cardiologist thanks to Nathan’s chemo and Julia’s Kawasaki’s disease. So – Lauren gets to join the fray. Why not!
I am trying not to worry about it. I have known plenty of kids with harmless murmurs. Even if it is a little more than that – I can handle anything short of a deadly disease. There is no exemption for the other children once you lose one child. There ought to be.
In my previous post I mentioned we had to have birthday cake for breakfast on Friday. The reason for that is we had to go to Denver right after school so we could spend the night and get on a plane early Saturday morning.
This is how we spent this morning…..
We are in Hilton Head Island, SC, spending Thanksgiving at my parent’s house.
I hope all of you have a Hapy Thanksgiving as well!
I am remiss in posting this. I have a good reason, which is the same reason we had birthday cake for breakfast. I will blog about that reason in a few days with some pictures.
We have now interred Nathan’s remains at the columbarium.
Luke wanted to go be there when they put them in and so I decided to bring Lauren and go as well. I didn’t really want to but I also felt compelled to go.
It it a gorgeous fall day with temperatures in the low 70’s. The ground at the cemetary was covered with leaves and Lauren had fun crunching around in them.
We followed the cemetery manager (Luke tells me that is his title) to the columbarium and they had a little pedestal and a fake green/grass carpet thingy on the cement in front of Nathan’s niche. That kind of made me cringe but I guess I should have expected that with it being a cemetery and all. I have to remind myself that most people like that kind of stuff – it was just that we were kind of trying to avoid it ourselves.
The drawer was open and the door was propped up on an easel. We looked at it for a moment and then the manager handed Luke the container and he put it in the drawer. We asked him to have it closed so we could take pictures of it and so he called someone over who closed it up and he went on his way.
We took some pictures and wandered over to the nearby stone chapel. Lauren picked up leaves.
After that, we went back home. We will talk to Julia, explain all the stuff (cremation etc) and take her over there sometime soon.
This was Nathan’s Halloween costume when he was 16 months old. When Julia was 21 months old, we were in Denver following Nathan’s transplant. We were given the green light to return home on Halloween. After the rush to pack and come home I could not find the costume I had purchased for Julia. I rummaged in the crawl space and came back with Nathan’s superman
costume and she wore it. As it turned out – it totally fit her personality. I have been waiting to put Lauren in it and the opportunity arose today. It is enormous on her – she is very petite!
I guess I have been told grief is like this. You are doing OK and then something or things knock you down.
I am still frustrated with my voice – did I mention I had laryngitis 10 days ago? I still cannot sing. I couldn’t even talk at first so there is progress but my voice is not better yet. Singing is one of few joys I get out of life right now.
Last night I walked into Hospice to take Julia to her grief group and to go to the parent group. There is a woman on the couch and I recognize her. It takes about 3 minutes and it comes to be who she is. She is the last nurse to come to try to help Nathan the morning he died. He had been in incredible pain all night. They finally sent her with some medicine for him. I remember how hard it was for her and she mentioned that she doesn’t usually go see kids because it is too hard for her with her own at home. She was visibly upset – and has every right to be. There in front of her was a seven year old child in pain and dying. She offered to stay until more of the ordered medicine arrived but I told her she could go – and she did, with much relief. That medicine arrived about a half an hour after Nathan died.
So – I went up to her last night and told her who I was. Tears started flowing immediately, automatically for both of us. She was there at the worst moment of my life and all those memories came back. She was there with her own second-grader. He daughter had just lost a good friend and was having trouble dealing with it. She was apologetic about being there since it was obviously hard for me. I told her it was probably better running into her there, in such a place where tears are normal, than in the grocery store or something. She asked me, with hope, if she was able to take care of Nathan’s pain that morning. I had to tell her that it helped for a few minutes but did not last.
We had our group and it was fine that she was there. The whole thing just took a lot out of me. I came home pretty much useless and Luke took care of the girls and I went out for some dinner. I am still kind of shaken up about it.
Today I read about another child with Neuroblastoma. She is in the ICU after having a reaction to her treatment. This treatment is the trial that Nathan was the first child to do last fall in NYC. This is the trail we were told could “CURE” Nathan. I have followed some of the children who did this trial after Nathan did. At least two others are also dead. NONE had any overall improvement and several progressed while on the trial. A few were stable on the trial and progressed afterwards. It has been a big fat failure while having some serious side effects. High blood pressure – crazy bleeding – obliteration of bone marrow – respiritory difficulties during the infusion – I am sure there are more. Not to mention spending all that time in NYC away from home for 99% of the kids. This sick child is on a respirator. Whatever happened to her happened during the infusion. During Nathan’s second infusion his sats went in to the 60’s for a couple of minutes. It was scary. There was much medical action going on even though he was being infused with a radioactive isotope and was emitting high levels of radiation. The study doc was actually the one that went ahead on got right there next to Nathan to try to help him and took the radiation. In my mind – I see this child in this situation, but instead of the problem being resolved – they had to intubate her. That could have been Nathan – almost was, probably.
It makes me uneasy. My first reaction is to wonder why this trial is going forward with such dismal results horrible side effects. Then I remember the situation that we were in. We were grateful that there was a trial for Nathan. He didn’t qualify for any other trial, really. The trial represents hope, even though it is now known to be very slim hope. When we did it, there was great hope. Either way – I guess I DO want the doctors to be able to offer this trial as an alternative to going home to die. The problem is, I want that for the PARENTS. Would we have put Nathan in that trial if he was just getting to it now? Armed with the knowledge of potential side effects and chances of having any sort of reduction in disease burden being slim? It is hard to say. I am sure this doctor is still serving up a very optimistic view of this study. I am sure the truths we know about it are being sugar-coated. I just don’t feel that any more kids should be put through this study. I guess it is just as well that it isn’t up to me.
So – all of that, plus the insurance crap leaves me not in the best state today. Oh well, what can I do?
I don’t think I have anything eloquent to say. I’ll try though. I’m still battling with our health insurance over Nathan’s medical bills. He hit his out-of-pocket maximum on January 23, 2007. They never stopped billing us for his coinsurance anyway. I spent 45 minutes on the phone arguing with the “specialist” about what an individual maximum meant versus a family maximum. She told me , once he hit the individual maximum then he just started accruing on the family maximum until that was hit. Huh? What is the purpose of an individual maximum then? 5 minutes before I needed to leave the house to pick up Julia from school she FINALLY got it. However, it was too late to make sure she was going to do anything helpful about it and I had to get off the phone. This is coupled with the fact that on October 2 I called and they told me they would issue an out of pocket audit. They have now told me that for some reason, even though I called on October 2, they did not start the process until October 29. It will be 30 business days. Gee – Thanks Uni+ed HELL Care.
So – we may be left with the dilemma – pay bills we don’t owe or be sent to collection and have a black mark on our credit report.
What a great choice. I just love the way insurance companies leave the patient with zero recourse when they can’t add two numbers together and their system even shows negative numbers as a balance due by us.
Oh – and the emotional cost to me is almost as bad. I just don’t have the extra emotional energy to battle with stupid people.