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.

Mmmm... Margarita

Luke made me a Margarita the other night. Since Lauren takes a bottle at 7:00 I can drink around dinner time. Anyway.. we have the BEST margarita recipe. I have made it for people who don't like Margaritas and they like it. S0 - I thought I would share....

Makes one drink - a double recipe will fit in most shakers.

1 1/4 oz Tequila
1/2 oz triple sec
1/2 oz fresh lime juice
1/3 cup margarita mix (we use Jose Cuervo mix - does not have alcohol in it)

Combine in shaker with ice. Shake. Strain into a glass over ice. Enjoy!

Chrystal

This is so not going to resonate with any of the male readers out there....

I remember when I was a little girl - I love the name Sindy - yes Cindy but spelled with an "S". That was the name I gave things and used as a pretend name.

Julia has chosen the name Chrystal. She uses it when playing pretend. She often asks Nathan to call her Chrystal when they are playing. Just now she is playing with "birthday cake" playdoh (a set she got) and she is singing happy birthday to the imaginary Chrystal. I have no idea where she heard the name, but I think it is so cute.

Of course - in her mind it could be spelled Kristyl or something.

For Kate

As requested - a few recent pictures of Lauren. Now you must reciprocate!

Quack Quack Quack

I dropped off Julia this morning at preschool and then preceded on my way with only Lauren in tow, asleep.

I found myself singing along to the music playing. It wasn't until it changed songs that I realized I was singing along with "Six Little Ducks" by Raffi. I quickly switched over to my iPod but I still can't believe I didn't even notice that I was singing "quack quack quack" aloud.

Shoehorn

Ok - so this is one of those annoying posts about something my kid did that I find interesting. You can stop reading now if you are one of those (nonparents likely) that are bored by these.

Anyway - Nathan has taken to using a shoe horn to put on his shoes. He is a very inflexible (physically) child - most likely due to a combination of chemo (Vincristine) and my genes. So the shoe horn really helps him since he can't sit down and bend his legs very much. I guess he decided he needed to keep it in a more convenient place.

I guess he went and got the clothespin and stuck it there. Perhaps when he is a little older he can help organize things in this house.

Newest addiction

Luke and I have a new favorite snack food...yum.

I will never be a professional party planner...

Julia had her birthday party today. She wanted it at home. She has been planning a Strawberry Shortcake theme party for a good nine months. Over the months she would occassionally instruct me in a very detailed manner about how she wanted her cake. She decided she wanted a party similar to last year. Last year the kids did crafts and decorated bags with fabric paint. Last year we had the party on a Saturday.

Ok - so this year I planned the party for a Monday afternoon. For some reason I thought it would be good and easier to have it on a weekday afternoon. Well - it really wasn't. First off - Luke had to work and couldn't help much. Also I had to go get Nathan from school. That coupled with the fact that I fed Lauren 3 times for at least a half an hour at a time before the party left little time to get ready. Fortunately I did get everything done.

I had some crafts. The kids did those for about a half hour and then went off to play instead. The two other moms that stayed and I worked on one of the crafts that proved to be too difficult for the kids.....

I actually did get the cake right. Julia wanted me to make it. It was white with pink frosting and strawberries on top. I convinced her to wait to put the strawberries on after she blew out the candles.

After cake, presents were opened and that was that.
All in all - it went fine - but the stress and preparation I could do without. I just do not enjoy throwing parties.

Happy Fourth Birthday Julia!

Four gallons of milk

Is this really my life? I am someone who buys four gallons of milk a a time? When did this happen?

This is what ran through my head today at Sam's club as someone waited for me to get done loading the milk into my cart. I ran to Sam's club this morning since I had an opportunity to do it without kids. Last time I took all 3 kids and it was a bit crazy. The term "3 kids" is also something taking getting used to. I walked out of a friends house briefly without Lauren the other day.

Anyway - these were the contents of my cart...my shopping list only had five things on it.

Aforementioned Milk
Box of 204 size 1-2 Pampers (no explaination needed there)
Box of 1200 paper plates - we use these at lunch and when we are lazy. If we didn't use these we would have too many dishes to fit in our dishwasher. These are the really thin cheap ones and we use more than one at a time if neccessary.
Gallon of canola oil
Socks for Luke
Juice boxes - Nathan only likes the orange juice in Minute Maid juice boxes - fortunately he can get them and do the straw all by himself - so worth buying!
4 large bottles of apple juice - mainly for Julia who has a cup every morning
Potato chips and tortilla chips - $2.44 for the big bags...not bad
6.5 pounds of ground beef - at $1.88 a pound it is worth packaging into 1 pound bags and freezing
Frozen sausage patties - total impulse buy. I love sausage and this way I can make myself one patty at a time.
Laundry detergent - With five people now in this house the amount of laundry is getting out of hand. Our habit is to do laundry once a week but we are getting the point where we can't get it all done in one day.
Clorox toilet drop-in thingies - we have a four and five year old using out toilets.....

I think that is it. Wow - how suburban mom can I be? This is a far cry from my former life as a CPA. I am not saying there is anything wrong with my life now - but sometimes it just seems weird to me that I am that thirty-something suburban mom with three kids buying four gallons of milk at a time.

The Sound of Us

This is the book I am currently reading. I love to read but haven't been doing much reading lately. Luke used to ask me what my books were about but I always told him the same thing - just a book about people's lives. Generally, those are my favorite books.

From Publishers Weekly
Willis (A Good Distance) gracefully explores the world of foster care through the eyes of 48-year-old Alice Marlowe, an interpreter for the deaf living a lonely life in Cleveland. When Alice receives a late-night phone call from a six-year-old girl whose mother has disappeared, the last thing she expects to do is apply to become her foster parent, but one look at beautiful, dark-skinned Larissa Benton changes everything. Alice's maternal impulse surprises her—"How did this child and I become us?" she wonders—as she attends foster parenting classes and wonders if she can cope. Willis allows for ambiguity in her moving story: when Michelle, Larissa's white, wayward mother, returns, she's neither a villain nor a victim; Alice, who converses with her dead twin brother, is not a saint. When Michelle moves into Alice's home to be closer to her daughter, the narrative reaches its height of tension; Willis shows both the safety and generosity of Alice's world and the unpredictable but loving home that Michelle would provide. A careful, tender story of the complex bonds of motherhood, this novel doesn't shy away from its problems, but still comes to rest on the side of its wonders. Copyright © Reed Business Information, a division of Reed Elsevier Inc. All rights reserved.

$1200 dog

Sure... lots of dogs cost that much - so I now decree our dog Ellie no longer a mutt but a pure-bred.

Last night she came down on some metal landscape edging and severed 2 tendons in her back paw. She had to have surgery and is supposed to stay off stairs for 3 weeks.

Did I mention that our house has FOUR sets of stairs?

Our weekend....

We just got back from a wonderful weekend in the mountains.

We took off late Friday afternoon for Grand Lake, CO. The sky was a very unusual color as the sun set so I snapped the shot on the left from the moving car.

We met my brother and his family at the house they have there.

They wanted to go skiing and to put their 3 year old into ski lessons so we put Nathan and Julia in as well. We were not terribly optimistic about either of them enjoying it and were generally concerned about Nathan having the strength and stamina physically - and the stick-to-it-iveness mentally. Well - they both LOVED skiing and did really well. I can't begin to tell you how amazing it was to see Nathan skiing after all he has been through.

















This morning we had fun sledding down the hill behind the house. The snow there is several feet deep and the weather was 30s and sunny so it made for perfect sledding weather.















All in all a very fun weekend. I may blog about it more later - it has been a long day.

My three bears

There is one baby outfit that all three children have worn. I put Lauren in it this morning. She is already in to 3-6 clothes. I can't get over how fast she is growing!

<--Nathan
<--Julia <--Lauren

CNN.com - Offbeat News

It is hard to type while I am nursing Lauren so I browse around. I have been enjoying these video clips today.

CNN.com - Offbeat News

I especially enjoy the Jeanne Moos segments

Why I love my iPod

Luke got me an iPod for my birthday in September and I have been slowly putting music on it. A few weeks ago I was listening to it while folding Laundry. I had it shuffling all songs. I absolutely love shuffle. I enjoy the surprise of what song plays next. "The Final Countdown" by Europe came on. This is a song I would not normally pick to listen to, yet I added it one time after going through old CDs. I thoroughly enjoyed listening to it - at full volume while folding baby clothes - yet none of the rest of my family had to be subjected to it.

I finally put my A-ha CDs on it the other day and while it was just Lauren and I in the car this morning I escaped back to the 80s.

I have not even come close to filling my iPod. I think I am too picky about what music to put on it and so in the end I miss songs that I don't choose to put on it - but if I did I would enjoy. So - I need to have a second go-around with my CD collection and add more music.

Finally, in closing I have to say the iPod makes an excellent buffer from the screams of fighting children.

How I kept from singing...

Well - I didn't get to choir practice or church this week. Wednesday evening I was not feeling well enough to go to practice and this morning we were concerned about Nathan being up to going since he is having some side effects from chemo. We could have gone to a later service this morning after we determined Nathan was OK - but unless we have a plan in place it is hard to get motivated after spending some morning time in our pajamas. We are used to being out of the house at 7:00 am.

We actually had a pretty dull weekend. It was filled with cleaning, laundry and disciplining children. Nathan has really started to develop a mouth on him and an attitude to go with it. At the same time he still cries like a baby when anything does not go his way. We are also in a constant battle to get Nathan and Julia to pick up their toys.

I did get to go out briefly with some other moms to PF Changs. We usually meet at 8:00 for dinner. Since I have to nurse Lauren at 9:00 I could only have dessert last night.

Boy - this is one of the most boring blog entries ever. I felt like I should write one - but perhaps writing for the sake of an updated entry is not wise. Next time I will wait until I have something interesting to write.

Random parting thought: The other day Luke was surprised when he was proofing an email I wrote to one of Nathan's oncologists. He thought it odd and, I think, antiquated that I use two spaces after a period. He said his company went to one space a long time ago. Is this standard now? Am I out of it? Please tell me what you do.

Real life baby doll

At times I like to call Lauren my real-life baby doll. With almost 4 years since my last baby and only 19 months between the first two I really have an appreciation for all the newborn things. I can hold her and rock her and kiss her all I want with no comments!

So - when I saw that Julia had gotten all her dolls out and put them on a blanket this morning I could not resist the urge to take this picture:

Kindergarten and chemo

School resumed today after the Christmas break (or excuse me...winter break). Nathan wasn't feeling so great since he started his fifth round of his current chemo regiment yesterday. Luke and I kind of pushed him into going to school and were justified by him having a good day and even participating in PE. We have always strived for him to live a normal life as possible while going through his treatments. Nathan was semi-famous among his classmates this morning for being in the newspaper during break.

He is having chemo at home in the afternoons the rest of the week. He really takes it all in stride. Here he is playing while attached to his chemo. It is in that ball-like thing.

I suppose I need to post about this in Nathan's caringbridge page. I can't get away from there being some overlap between the two sites since his treatments are a big part of my everyday life when he has something going on.

Thoughts at 5:00 am

I got up at 4:30 last night to feed Lauren. I could not go back to sleep and so all kinds of thought filled my mind.

1. Nathan has now lived more than half of his life as a cancer patient. He was 33 months at diagnosis. He is now 66 months. How warped his life view must be.

Nathan just came in the room as I was writing this - he just asked me did I remember when he had cancer and was wobbly and he had to hold on to the IV pump to walk. So - yes - I guess I just confirmed my thoughts. Before he just told me this he came up and snuggled up to me and said he loved me. I then took his picture because he is wearing a new shirt and looks so handsome.



2. I am trying to put together a birthday party for Julia. She turns 4 on the 22nd. I was working on the details of that. She wants a party at home with a Strawberry Shortcake theme. She wants to do arts and crafts. I really need to send out the invitations. I must try to keep my house clean between now and then so it isn't too much work to get ready.

Hmm - my other thoughts seem to have escaped me. Probably because now I am thinking about getting ready to go and all I need to do today. I am taking Julia to Tammy's (sitter) getting some things from the store and then taking Nathan to the clinic for chemo this afternoon.

Gotta go.....

Dull miscellany

CHOIR
I did sing in church choir yesterday. I didn't have much of a voice - but enough of one to enjoy taking part. Before Lauren came along I sang at the 8:00 and 9:30 services. We normally leave the house at 7:00 am. This was our first attempt to attend the 8:00 since Lauren was born. I set my alarm for 5:50 am in order to have time to get ready and to feed Lauren. We left the house only 7 minutes late. Not bad! There is something inherently unnatural about waking up a 6 week old baby though.

As the choir sat ready to practice prior to the service the minister preaching (not the usual one) came in to pray but beforehand make a crack about us all needing to get a life since we were actually at church at 7:30 am New Years Day. It didn't go over all that well...I don't think he quite meant it the way it came out.

DOG
It is not a good thing for new carpets when a dog eats a whole gallon bag of peanut brittle...'nuff said

FREECYCLE
Yesterday I ventured into the crawlspace and cleaned it out. I pulled out all of the boy clothes stored in there and sorted them. I then offered up 7 boxes on freecycle. Freecycle's goal is to keep items out of landfills by bringing together a local group of people to give and take unwanted things. I have only ever offered items and not taken any since I am just the kind of person who would prefer to jut go out and buy something if I need it - but I am so happy to be able to give my uwanted things to others who want them. Great service.

Bye Bye 2005

What a year! It was a roller coaster of a year for sure.

January 1, 2005 - HIGH - Life was good. Nathan had been NED (no evidence of disease) for over a year. Antibodies were done (no more travelling to NYC every 8 weeks for incredibly painful infusions for Nathan). Luke and I decide to proceed with trying for baby #3 as soon as we are able.




March 14 - HIGH - Very faint positive on pregnancy test!

March 14 - April 7 - LOW - concerns about the viability of pregnancy

March 16 to March 30- LOW - Nathan begins to have hip pain. Hip pain exactly like he had when he was diagnosed. Luke and I fear the worse - RELAPSE. We begin a process of tests and scans. This process takes 2 full weeks during which we are terrified.

March 31 - HIGH - Nathan's test results all come back clear of cancer. He has transient synovitis - a virus in the hip.

April 3 - April 7 - LOW - Julia is sick - no one is sure what is wrong with her. Turns out she has Kawasaki's disease (KD). She is hospitalized twice - doctors are disagreeing about whether or not she has KD. She finally gets KD treatment at hospital. A week later heart and blood tests show she did have KD.

April 7 - HIGH - leave Julia at hospital to get my ultrasound. Ultrasound shows healthy embryo with a heartbeat.

Late April - HIGH - we leave to go to Disney World on Nathan's Make-A-Wish trip.

April - next day... LOW - Nathan's hip pain is back with a vengence. He cannot walk. We enjoy the Magic Kingdom anyway.




May - HIGH - Everyone is feeling good. Julia's heart is normal, Nathan's hip is better. Pregnancy is going well. Enjoy a trip to Arizona to hang out with friends.

June early part - HIGH - Have a great trip to visit my parents in Hilton Head.


June 24 - LOW - Routine scans show Nathan's cancer has returned.







June 28 - HIGH - ultrasound of baby shows all is well.

July 7 - HIGH - Nathan is scheduled for surgery on Aug 1 in NYC. We are releived to have him on the schedule with the best surgeon in the country for this and also intra-operative radiation

July 15 - LOW - Nathan's surgery pushed back to Aug 31 - this means more chemo and a chance for cancer to spread while we wait

July 27 - LOW - Nathan's surgery pushed back more to September 15. We are getting upset about the delays and the chance Nathan's cancer will spread while we wait.

August 1 - HIGH - Nathan's surgery rescheduled to Aug 3...off we go!

August 3 - HIGH - Nathan's surgery is succesful. The entire tumor is removed and area irradiated.

August - HIGH - Nathan starts kindergarten and Julia starts preschool










September - HIGH - My brother Jason gets married - we attend wedding in Grand Lake, CO

November 16 - HIGH - Lauren Elizabeth Gentry makes her appearance into the world.


December - LOW - Nathan has his scans. The anticipation and possiblity of bad news is extremely stressful.

December 9 - HIGH - Nathan's scans are all clear! He is NED once again.


So - it has been a bumpy ride - but I am glad I can say that the year has ended with a high!

More honeymoon pics...

More of my favorite shots:

The Pu`u `O`o vent, Kilauea Volcano. Taken from a helicopter. Definately the coolest thing I have ever seen in person

Luke at Volcanos National Park.

Me at the base of a waterfall at the end of a hike in Maui.

Ah...bliss!

I recently had our honeymoon (September 1997) pictures put onto CD. They were previously on APS cartridges. Anyway - This picture was taken on a sunset dinner cruise in Maui. It was also my 25th birthday. Boy do we look young!

My Sunshine

 

Baby Sleeps in Own Room!

Last night was the first night Lauren (6 weeks old yesterday) has slept in her own bedroom. She has been sleeping in a bassinet at the foot of our bed. She was definately on a trend of waking up only once per night and so we decided it was time. Well - she slept ALL NIGHT wihtout a peep. She woke up at 6:15! I fed her and then put her back to bed until 8:00. Too bad Nathan and Julia get up at 6:30.

Now - I won't jinx myself and say this trend will continue - but I am delighted she did so well her first night.

Choir - rehearsal for Jan 1, 2006

Even though I have a cold and sound like a frog I returned to choir last night for the first time since Lauren was born. I really missed singing and was happy to return.

Introit: O thou that Tellest Good Tidings to Zion (from the Messiah) - Handel
Offering: This Child Is - arr. Fettke
Minstry of Music: Shine on Us - Smith

I absolutely love singing Shine on Us. Now I just have to hope I have a voice on Sunday.

Ok - me too

So - I have been blogging for a few years - but in a different forum. I have kept a website updated on my son's journey fighting neuroblastoma, a childhood cancer. I have been able to put some personal thoughts on this site - but its purpose excludes me from fully expressing myself and addressing other areas of my life. So - on the heels of my husband, Luke I have created my own blog.

Nathan's Story

Nathan was born on June 16, 2000. He was a very happy healthy little boy until March of 2003, when he began having fevers. He then developed a swollen black eye one weekend and I took him to the ER but they never figured out what it was. A week or two later he started to limp. On April 1, 2003 he was diagnosed with Stage IV Neuroblastoma. He had a large tumor on his kidney and cancer throughout his bones and bone marrow.

Nathan's treatment protocol called for 6 rounds of high-dose chemo followed by surgery and an autologous bone marrow transplant (his own bone marrow given back to him after super high-dose chemo). After all of that, Nathan was still not in remission and we took him to Memorial Sloan Kettering Cancer Center in New York City where he had surgery to finally put him into remission followed by a year of antibody treatments. During this year he attended preschool and lived a normal life in between visits to NYC. He finished that protocol in October 2004 and then he relapsed in June 2005 with another tumor. He had more chemo and surgery in August 2005 to removed the tumor. He came home and started morning kindergarten and would have chemo in the afternoons. We found out he was in remission again in December 2005. He continued with the chemo and then switched to a light medication in the spring. In June 2006 we found out he relapsed again, this time with cancer throughout his bones but no tumors and his bone marrow was clean. He had some high dose chemo at home and then we headed to NYC again in September and enrolled him as the first patient in a new clinical trial. We ended up staying there through mid-December 2006 where he was hospitalized for 6 weeks and his cancer progressed. He came home right before Christmas and we spent our last Christmas together. He was still feeling good at this point and we gave him some light chemo to slow the cancer as much as possible. Nathan went to first grade in January where he had a wonderful semester. By the last two weeks of school he was slowing down and beginning to be in pain but he finished school.

Nathan died slowly and painfully, but at home with his family on July 29, 2007.

Nathan loved cars and trucks and legos and playmobil. He loved his little sisters and school. Nathan was an old soul and had a mature appreciation for natural beauty. He remained a happy, playful child despite the treatments and pain. He was a wonderful son.