Yesterday we were up at CHLA to meet with Dr. Finlay and Anna to go over Lauren's autopsy ( I had mistakenly just wrote MRI) report. While this was something we didn't really want to do, it was something we needed to do. The hardest part, it turned out, was not the findings of the report but just going to, and physically being at CHLA. Just the drive to CHLA brought back so many memories. The landmarks of when we'd start putting on her numbing cream. The exit we'd get off to go to Sen Shin Gumi (her favorite ramen restaurant). The police building where we'd guess how many helicopters would be parked on the roof, but the drive there was nothing compared to the emotion of arriving at CHLA -- driving down into the parking garage and trying to find a spot, wondering if we'd be on the ladybug or the butterfly level, checking in at the reception desk. The old musky smell of the place brought back so many memories. Walking down the halls I could almost imagine Lauren being there walking between me and Hilary, holding our hands.

Going into this meeting I didn't know what I wanted to hear. Did I want to hear that the tumor was dead and the coughing from the lung infection caused the dead tissue to hemorrhage? Did I want to hear that the tumor was growing and she had no chance anyway? Did I want to hear she had a chance, or that she had no chance? One of my fears was I caused Lauren to get the lung infection when I was cleaning some mold off the garage floor a few weeks prior to Lauren getting the lung infection.

Autopsy Report
We met Dr. Finlay in his office. That was first time we've ever been in there. The autopsy report indicated that yes, Lauren was battling a fungus infection in her lungs, and yes, there was some hemorrhaging in her tumor, but that neither the lung infection nor the hemorrhaging was the cause of death. The cause of death was due to the tumor transforming from "anaplastic astrocytoma" into a higher grade "glioblastoma multiforme" tumor. These types of tumor are common in men and women in there 50's to 70's. It's stats like these that really piss me off. Not only did Lauren beat the odds and got a tumor, but she got one of the more uncommon types of pediatric tumors. The autopsy findings found that the tumor had spread into the area of the brain that supported her breathing. Her panting during the last couple of weeks was not due to her lung infection, but due to an explosive growth in her tumor. And it was this panting that caused Lauren's heart to finally give out. Like running non-stop for a week. The tumor cells was intertwined in good brain cells, which made it impossible to pick up on an MRI.

We did ask if she was in pain. One of Hilary biggest worries was whether Lauren was in pain. The thought of Lauren being in pain and mommy not being able to help has haunted Hilary since Lauren's passing. Dr. Finlay said no. The tumor didn't invade her spine, which can be very painful and she didn't show signs of having hydrocephalus, which is also painful. The tumor did grow into a part of the brain that affects caring. That is what they think caused her incontinence towards the end. She didn't care where she relieved herself. This was also why she was so indifferent a lot of the times when we sat Finlay by her. Except on occasion towards the end, Lauren would reach out and touch Finlay and Marissa affectionately. So I do believe and take comfort in fact that Lauren's love for her sisters was so strong that the tumor couldn't totally suppress those feelings.

While it was tough to go to CHLA (the original plan was to meet Dr. Finlay and Anna somewhere else and have drinks), it was nice to see everybody, even though a lot of nurses were not there. CHLA and the people were such a big and important part of our lives for so long. While we never want to be a patient there again, we miss everybody there so much.

So did we find closure? No, not completely. Maybe a little. I think it'll take time to absorb everything from yesterday. I do know that I miss Lauren so much. But it was comforting to know how much everybody there loved Lauren and how they thought she was a very special girl. Dr. Finlay told us it was an honor to be Lauren's doctor. And I will always be so proud of Lauren for how she handled her self through this whole ordeal. I wish I could be as strong as she was.

Well, Hilary and I attended a grief support meeting for families that have lost children. We were late of course, and as we walked in I felt like such a loser, surrounded by other losers. Don't get me wrong they were all very nice people, but this room was a losing team's locker room. I didn't want to be there, I wanted to either be in the winners' locker room or back out on the field, battling.

This is what I learned from the meeting:

* I am not very good at verbally expressing myself. I hate talking in front of people even if it is in front of only three other families.

* I thought maybe I'd been overreacting about the amount of sadness and grief I was still feeling, turns out people still feel the same way I do after 3+ years. It's good to know my grieving is normal, at least compared to the other family in the rooms.

* Holidays will be tough, which I figured they would be.

* Talking with the other parents about our children's treatments, and hearing how some of the other children would freak out over being accessed or given shots, reiterated how blessed we were in that Lauren's non-fear of needles sure made our weekly visits to the hospital so much easier. However, at the same time it's heart breaking to know that these innocent children have had to deal with such awful stuff at such a young age. It's just so unfair.

* I also learned that my "smart alec" sense of humor doesn't play well at a grief counseling meeting, especially when I said jokingly, after Hilary mentioned her cousin, Auntie Say also has a brain tumor, that I blame her side of the family for Lauren's tumor. I could hear the whole room gasp at that remark. I was joking!

All and all, even though I didn't want to be there, since I don't like to discuss my "feelings" (I'd rather suppress them), it was good. I think it was also good for Hilary.

When Lauren and Kiera got their ears pierced towards the end of '08, I only allowed Lauren to get it done because not only did she really want it, but because her hair was just beginning to grow back and she kept being mistaken for a boy. I remember one time visiting the Golden Gate gift shop (Lauren always had to stop at every gift shop), the lady behind the counter said directly to Lauren, "What a cute boy. You are a boy, aren't you?". She only had a pink sweatsuit on, or whatever they are called. Kiera's dad wasn't too thrilled about it, but not only was it Kiera's idea, but Lauren really wanted to get them done together, so what could he say?? When we asked Marissa if she wanted to get her ears pierced, how could we not ask her at the time, she said "No. I don't want them done until I'm 19 (that was her favorite number at the time)."

A little side note: Marissa is transforming into a mini-Lauren. There was a Sketchers commercial on the other day. Marissa was uninterested in the shoes, but when I mentioned that Lauren would have loved them, she yelled, I want them! Lauren loved dresses and didn't like jeans (because pants were uncomfortable due to her puffiness), now Marissa loves dresses and hates to wear pants. Marissa didn't want to play basketball, but she saw Lauren's basketball trophy and basketball pictures, now she wants to play basketball. Marissa also asked when she could start Daiseys. Almost every morning Lauren use to call granda and invite him to breakfast, now Marissa has been calling Granda inviting him to breakfast.

Fast forward 8 months or so later to this past Sunday. Marissa noticed that Hilary was wearing different earring. She ask, "Are those granny earrings?" Hil told her, no they are Lauren's. Marissa then asked, When can I get my ears pierced? Hil asked her, "When would you like to? Marissa said, "Today." But it was late, so she changed it to tomorrow. So yesterday, with her ears coated with some of Lauren's old numbing cream, Marissa, mommy, granny, and Finlay, went to the mall and got them done. Since the girl at the body piercing/tattoo parlor or wherever little girls go to get their ears pierced, was by herself she had to get each ear done one at a time. It also didn't help that the girl who went before Marissa cried. Once in the chair she said she was nervous. So Granny held one hand and since Hilary was taking pictures and couldn't hold her other hand, she told her to hold your hand out and hold Lauren's hand. She held her hand out and clutched it as if she was holding Lauren's hand. This might be a surprise to a lot of people, but when it comes to formal things like this, doctor's appointments, face painting or swim lessons, Marissa gets very serious, quiet and really concentrates. Not moving a muscle. After the girl did the first ear, everybody was watching her face to see how she would react. Everybody thought she was going to cry, when a huge smile came across her face, she yelled, it didn't hurt at all!

While we are sad that Marissa is sad and misses her big sister, it's nice to know that she hasn't forgotten about Lauren. They truly loved each other. The other day her friend Tyler was over and he was watching TV. She came up behind him and gave him an affectionate head lock hug, just like she use to do to Lauren. I think she did it subconsciously. This is when we can tell she really misses Lauren and is lonely. Too bad Tyler will be moving to Hawaii in August.


Other stuff:

* Father's day was very hard. One of the hardest days for me yet.

We've been staying busy. Went camping at Doheny Beach the past two weekends. Camping, however, will always be bitter sweet since we pretty much got the camper specifically for Lauren. I'm not saying we're not going to use it, since we've been using it every chance we get, but it will always remind us that our family is not complete. This weekend was particularly hard since we had this camping trip planned since Dec. (you have to reserve this camp site 6 months in advance) when Lauren was doing well.

We went with Lauren's best friends (other than Madisen), Hannah and Hailey and her cousin Kiera. It was hard to watch the girls playing and not think Lauren should be running around and playing with them. Even though Marissa was playing with them, she had a sadness about her. Of course we also wondered if Lauren would have been able to play with them, or would she have just sat there and watched them.

Some people have been telling us that they have felt Lauren here and there, and gotten a sense of peace whether it's during a trip to Disneyland, or surfing in Columbia at sunset. Uncle Steve had a dream of Lauren coming to him and telling him she loves him and that she is taking care of Brooke and is okay. Am I jealous of these people? Yes. I try to imagine her up in heaven and being happy. Every morning that we've camped, I've gotten up at the crack of dawn to take my morning hike along the beach (I am in training to climb Mt. Whitney in Sept) or in the hills (depending on where we're camping). I admit I do this in hopes I too will feel Lauren's presence and maybe find some peace. How much more peaceful and beautiful can it get than a stroll down a deserted beach in the early morning with the only sounds you can hear are from the sea gulls and the waves crashing? Even still, things seem to be a little less pretty these days and I have never felt any sense of peace. Apparently I'm not ready to be at peace. Maybe I'll find it on the top of Mt. Whitney. Then again maybe I'll never find it. I just wish I knew for sure that Lauren, wherever she is, is okay.

Other stuff:

Auntie Say's neurosurgeon in SF is recommending radiation. That makes 2 out of 3 doctors recommending radiation, with Dr. Finlay the only one, who continues to recommend only chemo.

This was written by the parents of one of Lauren's classmate.

Lauren was so amazing and brave,
To see her gentle smile again is what we all crave.
Lauren was so special and smart,
Her story and spirit warmed everyone's heart.
Her eyes had a twinkle that couldn't be beat,
She was always playful and ever so sweet.
Thank you for sharing her beautiful life with us,
She was a wonderful student that never caused a fuss.
She had such fun when she was in a group,
Working on projects with the rest of her troop.
Her courage each day was a lesson to us all,
Her heart was so big for a stature so small.
After getting to know Lauren our lives were all changed,
Going to class without her will be so strange.
With parents so optimistic never seeming sullen or blue,
Keeping all of us updated on what she went through.
It is comforting to know she is no longer in pain,
Yet her loss makes us feel like we've been hit by a train.
Although we find comfort in knowing that she has gone on to heaven,
It was much too early to let her go before she was seven.
Even though her time was far too rushed,
It's amazing how many lives Lauren has touched.

By Scott and Tara Agajanian

I know there are a few people out there wondering how we're doing since I haven't posted an update in awhile. I would say we're still not doing good, but we're coping as best we can. We've been keeping busy, having gone to Disney, camping and Las Vegas/Phoenix (the girls went to Phoenix to visit Uncle Steve, while I went to Vegas with the fellas), the past three consecutive weekends.

Disneyland was tough, since not only did Lauren really love Disney, but we were planning to take her there when she got out of the hospital and also this specific visit had been planned for awhile. My friends from NorCal were coming down and we had planned to hang out with them (with Lauren) for three days. It was tough. Lauren was constantly on our minds, especially when we sat on rides or attractions that she loved, like It's a Small World and the Tiki Room. But even rides that she didn't go on, like the Matterhorn, was tough. On this visit, Marissa decided reluctantly, to go on the Matterhorn since all the other older girls were going on it. She ended up LOVING IT. Which brought a smile to my face, but at the same time made me sad inside knowing that Lauren never did get to go on it. It's strange but the happier I feel on the outside, the more sad I feel on the inside. Every time I feel happy or laugh at something, I also feel sad because I know how much that something would have made Lauren laugh or how much she would have liked it. Obviously, we just don't feel complete being there without Lauren. Marissa told us more than once during the day at Disney that she misses Lauren.

The following weekend we went camping with three other families. It was tough. My one friend have two daughters, 5 and 7 years old. Seeing them and Marissa playing was really hard. Also seeing the older girls there was hard because Lauren would have really liked to hang out with them.

And this past weekend, the girls with granny/granda went to visit Uncle Steve in Arizona. Hilary said the house seemed a little quiet without Lauren's contagious laugh. She also had a way of egging Marissa on, usually to do something funny and mischievous. Once again, Marissa told Hilary that she misses Lauren.

Other stuff:

Marissa has started swim lesson. Of course, this is something Lauren always wanted to do. Marissa was so determined to lean how to swim and to see how much fun and how well Marissa is doing it makes me both so happy and sad. I know it's painful. Everything we do makes us think about how much Lauren would have liked it. Like those silly pillow pets. They are stuffed animals that fold open into a pillow. She really, really wanted one. But I wouldn't buy her one. She had too much stuffed animals already. Granda has spent a fortune on stuffed animals for her. She'd play with them for a few minutes, not even a day sometimes. But now that Marissa has two of them, I'm thinking how hard would it have been to buy her one.

Auntie Say is heading to SF to meet with her neurosurgeon. There has been some changes in her MRI. There has been discrepancy between the doctors (that includes Dr. Finlay) on what is happening. They can not tell if the tumor is growing or if part of her brain has shifted due to the removal of part of the tumor. It is amazing how much interpretation goes into reading an MRI. I would think it would be more black and white, yes or no.

Finlay has stopped holding her head at those strange angles. We're hoping that she was just fooling around. It doesn't help that we're extremely paranoid. Also, she was 21 lbs. at her last weigh-in. Marissa is only 31 lbs. Lauren and Marissa didn't hit 20 lbs. until they were over 12 months. Chunky Monkey.


Here are pictures of some of Lauren final days: When the tumor hemorrhaged and we thought we were going to lose her. We never talked to her again after this; Moments before she passed; Mrs. Little visiting; Uncle Mike painting her nails; About to leave CHLA for the last time; ....and Lauren at peace.

Tough weekend. This was Hilary's first Mother's day with Finlay, but her first Mother's day without Lauren. People who are wondering how we are holding up, we're doing okay, at least on the outside. This week is harder than last week, and last week was harder than the prior week. Some people are surprised when I tell them it is harder now than when she was going through her chemo. When she was going through her chemo, at least we had hope. We could reach over and touch and kiss her. Now we have nothing and the thought that we'll never see her again keeps eating away at us inside. There are times where I wonder how we are going to be able to go on without her. Maybe if we felt she was suffering or in pain, it would have be easier, but she never gave the appearance that she was ever suffering.

Other stuff:

Finlay has started to hold her head funny. It will tilt to the side, she's also been tugging at her ear. We're hoping it is just an earache. But seeing her do that is freaking us out. It very reminiscent of the symptoms Lauren showed right before she was diagnosed. They thought Lauren had a sinus infection. Hilary is going to take her to the doctor today. Are we worried? Yes, very. Are we over-reacting? Probably. Are we paranoid? Extremely. You can't tell us not to worry about it, it's probably nothing. We've heard that before. Having kids is too stressful.

Short story:
So the other day Marissa wanted me to play house with her. I said, okay I'm mommy. She said, No, I want to be mommy. I said okay, you can be mommy and I'll be daddy. She said, okay…CLEAN UP!!!! I ignored her and turned up the TV.