Scent memories

Last night Luke drank a cognac mini bottle that he had gotten in his Christmas Stocking. I took a whiff of it and I was immediately transported back to the age of 15. The first alcohol I ever had was Christian Brothers Brandy - swiped from a friend's parents stash. It was just an immediate jolt and for a milli-second I was 15 again. I love it when things like that happen.

Feeling stressed

It has been a stressful few days trying to figure out Nathan's scan schedule in New York and all the travel details. Mostly the decision about who will be going with Nathan is causing major angst. Luke and I have so many mixed feelings. We decided earlier today that everyone but Julia would be going. I am not having second thoughts about that. I just picture it from her perspective...her whole family heading off on an airplane without her. It tears me up. We are trying to balance what would be easiest, money, and emotions and there is no good answer. I am hoping i wake up tomorrow with a more clear idea of what is right.

I called our neighbors to see if they would care for our dog. They have cared for her in the past when we have been away for medical reasons. Their oldest daughter (16) also babysits for us. They told me that this daughter had just been diagnosed with Hodgkin's disease. I was floored. I just can't believe that they are also being affected by childhood cancer. It just sucks and darn it - I feel like since it happened to us that the rest of the neighborhood should statistically be exempt.

We all went to church tonight. I am just so emotionally tired that it was hard to concentrate but I am really looking forward to singing this Sunday. I will do a separate post about that.

I hope my stress level is down tomorrow and we can make a final decision about our trip.

Legos

Nathan got Lego X-pod at the clinic on Friday. He took to it very quickly and was soon making all kinds of vehicles out of it. Of course, I had to first convince him it was OK for him to play with it since it said ages 6 +. I told him that he rounds to 6.

I went out yesterday and got the biggest tub of Legos I could find (and some more X-pods for travel) and brought it home. This tub said ages 4+ and Julia was quite happy about that. The two of them have been having so much fun. I love Legos and am quite excited to now be able to play with them again! I am now wishing for the hundreds of Legos and cool Lego parts I played with growing up that are now residing in South Carolina with my parents.

Missing in action again

I have been remiss in blogging again. Thursday and Friday were pretty busy. We had appointments and errands and Lauren is becoming more demanding as she becomes more aware of the world around her.

As I wrote in Nathan's blog, we are going to be off to New York very soon to do his scans there. Luke got a call Friday afternoon confirming Nathan's bone marrows for Monday morning. He had to tell them there was no way we could be there Monday morning so they are rescheduling. I had given them a range of dates that they obviously ignored. Hopefully we will have a schedule early next week. We still need to figure out how we are getting there and where we are staying so we can figure out if we are bringing Julia with us.

We are in enjoying the company of Luke's parents this weekend. Mike was unable to travel at Christmas and so this is his first chance to meet Lauren. Luke and I took advantage of them being here and ran out to mattress shop. We tried out one of those foam beds. We decided they are comfy and less bouncy - but not worth $1000 more than a regular mattress. We picked one out and said we were going elsewhere to look. They then played the "call my manager" game when we put our price out there. Of course, the manager said yes and the other salespeople went on and on about how suprised they were that the "manager" let him give us such a good deal. Luke and I just rolled our eyes at eachother. Do people really fall for that stuff?

So - we are off to church in the morning. I am looking forward to singing after missing the past two weeks. It does mean me getting up at 5:45 so I can get ready and also feed Lauren - but it is worth it for me.

By the way - it was negative 10 degrees this morning when we woke up this morning. Right now (mid-afternoon) it is a balmy 8 degrees. At least it is sunny....

Finally healthy

I have finally fully recovered from the bug we had as well as a bout of Mastitis that cropped up on Sunday. I was actualy able to go do a full grocery shopping trip yesterday while Nate and Jules were in school. I even made it to Julia's class party. Nathan also had one - but I am completely a "slacker mom" in his class. I haven't done one thing in his classroom. I would like to, but I do not have the time or ability with having a nursing baby. I figure by the time Lauren is Kindergarten I will be able to be one of those moms that does everything and fills the other moms with guilt.

Sleep is still running short in this house because Lauren is not sleeping. We believe she is teething. Nathan and Julia both got teeth at 4 months and I think Lauren is trying to beat them. After crying off and on for 2 or three hours I finally went and slept with her. She laid on my chest and whimpered. It was so sad. She is normally such a happy baby and she has been so cranky. I hope if it is teeth the first one hurries up and pokes through. The first one is always the worst.

I need to cut this short- I have a baby on me who seems to be waking up. She has her mouth burried in my shoulder. Poor thing.

Tagged: Three things

I got tagged by Mommasita

3 names I answer to:
Susan
Mommy
Hun

3 parts of your heritage:
Irish
German
Swedish

3 things that scare me:
losing a child
spiders
nuclear war

3 of your everyday essentials:
my computer
cranberry juice
breast pump

3 things you are wearing right now:
jeans
gray long-sleeved T
diamond earrings

3 of your favorite songs:
Big Log - Robert Plant
Come What May - Nicole Kidman & Ewan McGregor
Jesu, Joy of Man's Desiring - Bach

3 things about the opposite sex that appeal to you:
Intelligence
Kindness
Athleticism

3 things you want in a relationship (other than real love)
equal partnership
ability to laugh together
trust

3 of your favorite hobbies:
singing in choir
taking pictures of my kids
reading

3 Places you want to go:
Tahiti
Australia
Grand Canyon

3 things you want to do before you die:
learn how to ski
take a trip around the world with Luke
speak another language fluently

3 ways that you are stereotypically a female/male:
I scream at the sight of an insect in the house
I love to shop for clothes
I like talking on the phone

I will tag Anna and also tag readers Katie A. and Beth D. to answer in the comments

A pretty ideal Saturday

First off - I slept in... until 7:30. I am not being sarcastic - it was very nice. I was up at 4:00 to feed Lauren but she went right back to sleep.

We lazed around in our pajamas for quite awhile. Now this "lazing" includes nursing Lauren every 2 hours for about 45 minutes each time this morning - but it also involves sitting in my pajamas using the computer with one hand - so it counts.

We all bathed and dressed and had lunch. Lauren took a little nap and so I worked on a puzzle and Luke did something or other on his computer while Nathan and Julia played.

After yet another nursing of Lauren we went out intending to go to Wal-Mart. Thankfully it was actually too crowded and so we did not go in and instead went to Payless and got Nathan some dress shoes. If we had made it inside the insame Wal-mart this day would have definately been less ideal. Only our dinner suffered...more on that later.

We then drove to Dunkin Donuts for afternoon snack followed by a stop at the park so I could nurse Lauren in the car while the kids played. It was only 35 degrees but it was sunny. The kids got a kick out of seeing the ducks walk around on the frozen lake.

We came home - I fed lauren again and we threw in a frozen pizza and pizza rolls in the oven (which meant no dishes). The kids cleaned up toys and showered and are now in bed. Luke is giving Lauren a bottle and then we will entertain her, I will feed her again and then I will fall asleep in front of Saturday Night Live.

Yep - this kind of normal everyday stuff is the kind I like. When I actually write down how often I feed Lauren it is a bit daunting, but like I said before - it is pretty relaxing - it just takes so much of my time.

So - what did you do today?

She's feeling better..

Sick is not just sick (in this house anyway)

Well the blog has been quiet - so that means that life hasn't.

Julia started the morning early on Sunday by throwing up. She couldn't keep anything down all day. She is better now.

Lauren is now sick. She woke up at 4:00 am and was just crying and grunting in pain. She pretty much did this all day when she was not eating or sleeping and she has a fever. She also seems to have aches and pains. I almost wish she had vomiting or diarrhea so I would know she had Julia's bug. But she doesn't.

So - I can't be like a normal parent and call it a virus. No - I have thoughts of "bad" things. It doesn't help that she was crying out when I picked her up under the arms and that she has a low-grade fever. Those were Nathan's first symptoms of his cancer.

So - her pediatrician gamely let me bring her in at 6:30 this evening. She said they would do anything for us. She is, after all, the one who referred Julia for Kawasaki's disease treatment even though she didn't think she had it, saying, "She is a Gentry after all!" And - wouldn't you know it- a week after Julia's treatment her tests showed she DID have Kawasaki's disease. So - her doctor is almost as paranoid as I am.

No obvious infections. Lungs are clear - pulse-ox is fine. They even checked for a urinary tract infection. Yep - they put in a catheter. I really wonder if they would have done that for another patient or if they were trying to ease my mind. If they did it for me - then I feel bad...I didn't suggest it or anything.

Her doctor thinks she just has a virus and her body aches.

We'll see what tomorrow brings.

On a "happier" note - now that Julia has been sick I think we know why Nathan had such weird stuff going on on Friday - his body just handled it differently.

Nathan

I guess it is time for a more journal type of entry.

I just updated Nathan's caringbridge site with all things medical. So you might want to read that first.

So anyway - it was hard seeing him feel so bad today. He has actually felt so good these past 7 months since relapse we can pretty easily shift our focus away from his battle. I have been feeling some angst lately about his disease. There have been several relapses of other neuroblastoma kids and a few others having progression. In particular there have been a few who relapsed and got back into remission again only to relapse again recently. Since we stand at second remission with Nathan right now and knowing that chances of him NOT relapsing are very, very low it is disheartening seeing the evidence of that being true. I "know" these kids through the Neuroblastoma listserv on ACOR. Some of them I have met in person.

We have been waiting for a vaccine trial to open for Nathan. When he had his surgery in August we were told - "have him do 2 rounds of chemo and then come back for the trial in 6 weeks". After six weeks the trial still ahd not opened and we were told it would be another 6 weeks. Then we were told almost certainly the end of January and the latest is sometime in March. Meanwhile he has been doing rounds if chemo that are not very well tolerated by his bone marrow. If his disease comes back he will not be eligible for this trial (though he will suddenly be eligible for a zillion others). The hold up is FDA approval - so we don't blame the institution - we just wish it would hurry up at get approved. Nathan is eligible for so few trials since he has no measurable disease. That is FINE with us - but we know he still needs treatment and so this vaccine trial is ideal since it is not a chemo. I just keep thinking that it will keep being delayed and then he will relapse and we will always wonder if he had just gotten to do the vaccine trial maybe that would have been the thing that could have saved his life. Ughh.

Then - there are the set of non-life-threating problems I mentioned in his caringbridge site. A runny nose and chronic diarrhea/loose stools. I do believe we have now tried every single allergy medicine out there for his runny nose to no avail. His upper lip is always coated with snot. No matter how often his wipes or blows - there it is. It has been this way since he started chemo in April 2003.

Who knows about the loose stools. They have been a problem since his second surgery in November 2003. They are such an annoyance to him and they have contributed to him being skinnier than he should. I think he compensates by eating. He eats more than an adult does.

Anyway - Of all these things - the trial opening ASAP is top on my list. I can't explain how crazy it makes me that his life may be riding on this and there is nothing to do but wait.

Well - I have ignored Lauren long enough and her babbling is starting to sound a little fussy - so I will wrap this up - but I could go on and on....

If you can't trust your own mother....

Nathan has always been a pretty cautious kid. Yesterday he and Julia wanted to watch a movie. Of course, it was when I was nursing Lauren. They never need anything from me unless I am too busy. Nathan hunted down the portable DVD player and battery. I told him to try to put the battery on and he told me he didn't know if kids were allowed to do that. It took much more persuasion for him to try. He is convinced that batteries are dangerous. I suppose I told him one time not to play with batteries. The thing is - he didn't trust me when I told him it was OK. I finally told him that I am his mother and that I, of all people, would not have him do something dangerous. Sheesh.