History

Journal History

Thursday, July 8, 2004 11:45 AM CDT

As of yesterday, four years have passed since you've been gone
from us. In a few more months, you will have been gone
longer than you were here. That's hard to believe.
We still miss you and think of you daily, my sweet girl.
Yesterday, Billy said, "I want Rebecca to come back home."
How do you explain to a 2 year old why you won't come back?
I told him that you live in Heaven now and that you can't
live with us anymore. I also told him how much I miss you and how much I wish you could come back too.
Even though July 7 is a day we commemorate as the day you
left us, it's really no different than the other days.
We miss you the same all the time. I can't tell you how many times I see something that I know you'd like or go somewhere that I wish you could be and wonder what you'd be like now as an 8 year old.
Several friends called us to let us know how much they think of you, too. You are loved a lot by many people that will never forget you.

Thurday, March 4, 2004

Well, you would have been 8 today, my sweet little girl.
I wonder what you would have been like now....so much more grown up! Of course, you will always be 4 in my memories, though you acted so much older. I miss you more than you could ever know.

Billy still reminds me of you in many ways...he has an enthusiasm for things, likes things to be a certain way (or he has a tantrum....), and doesn't like it when I wear certain clothes! I wish you could be here to play with him. He looks at your picture often, points to it, and knows you're his big sister.

We all went to the cemetery today with flowers and balloons. We let the balloons go and watched them sail up to the sky until we couldn't see them anymore. Then we had your favorite dinner (Newport Seafood lobster) and a chocolate cake. It seemed so empty without you, as it does every day.

I wish I had the strength to watch the videos of you, but I don't right now. It's too painful to hear your voice, your laugh, your songs out loud....sometimes it's easier to just have it in my head, which I do all the time.

Happy Birthday, my love.

Monday, July 7, 2003

It seems like I only write on those "special" dates....like your birthday and today, the anniversary of the day you died. But then every day really feels like
every other day. No one is really more painful than the next. You are still gone and you always will be. I miss you so much, my sweet little girl. Has it really been three years? Sometimes it seems like it was another lifetime when you were here with us, while other times as if only a short time has passed. Billy has now been part of
our family for two of your anniversaries. In some ways, he reminds us a lot of you; his devilish smile, the way he likes to hit us on the head, and the way he does just what we tell him not to do as if to mock us. Of course, his big brown eyes look like yours, too. And I always think how much you would have loved him and how much he would have loved you.
Our family will never seem complete to me without you here.
I love you, Rebecca.

Tuesday, March 4, 2003 11:59 AM CST

Happy Birthday, my sweet Rebecca! Today you are 7 years old....I often try to imagine what you would be like now if you were here with us. I miss your sense of humor and love of life. I miss hanging out with you and laughing. I miss reading books to you, pretending with you, and of course,
talking about food with you (and then eating it)! Alex and I made you a cake (chocolate, of course) and decorated it with lots of sprinkles and candy hearts. We
used glitter candles, too. I'm sure you would have loved
it. We had your favorite dinner (lobster from Newport Seafood). Alex wrote you a poem, also, and read it aloud
at the cemetary. We let 4 balloons go up to you, one from
each of us.
It's hard to be here without you, and I always feel
the weight of it. I know Billy would have loved you, too,
and will definitely hear lots of things about his
amazing, courageous, funny, sweet, inspirational big sister!
We love you, Rebecca!

Wednesday, December 25, 2002 at 11:06 AM (CST)

I've been thinking about Rebecca even more than usual lately.
It might be because of the time of year, which of course reminds me of the time of her diagnosis and relapse.
It's hard to believe that 2 days ago was the 4th anniversary of her diagnosis. And now she's been gone for 2 1/2 years. I miss her so much...she really did make every day fun for all of us. Her enthusiasm for life is so notably ABSENT now. And since I've been working on jewelry making a little lately, I really miss having her around to offer advice, help, and admire my work! Alex and the other two "boys" really couldn't care less about jewelry or cooking or any of those "girl things." But how Rebecca loved
them! I miss her little voice, her funny and quirky
ways, and just her "joie de vivre".
Billy has kept Rick and me very busy, so it's hard to
have time to do anything or even think about anything for too long without being interrupted. That's good and bad, I guess. But sometimes I really miss having that time to
think about Rebecca and grieve and just be in my own thoughts. Going to the cemetery doesn't really give any
comfort these days. It's a nice peaceful place, but I don't really feel like she's more "with me" there than anywhere else. I think it's in her room that I feel the most connected to her...her art and her "vibes" are in there.
Lately, we've been using the room to play with Billy and sometimes to watch TV or a DVD. It's nice to be in there
in a way. We are going to put Billy's crib in the room for the time being, but are not at the point where we feel
like it's OK to make it "his" room. I don't think I'll
ever feel like taking her stuff off the walls or out of her
drawers. Those things were things she loved so much and really enjoyed looking at. I feel better knowing they are still there.

Well, enough for now.

Sunday, July 07, 2002 at 11:52 PM (CDT)

It's hard to believe that 2 years have passed since our sweet little girl died. We went to the cemetery today with Alex and Billy. We brought flowers that we picked at our house and at Barbara's house where Rebecca used to love to pick flowers to give to me. We talked about some of Rebecca's funny and endearing qualities, and wondered how she would have liked her baby brother. I know he would have loved her and that she would have made him smile and laugh with her funny expressions and cute little voice. Alex and I read some
of the things that he and Rebecca said and did when they were toddlers. He didn't remember too much, but laughed at a lot of the anecdotes. Rebecca really was an amazing child. I think someone on the newsgroup summed it up best when she said "... it feels like yesterday, 100 yrs ago,
and in a different lifetime all together all at the same time..." It's hard to explain this to someone who hasn't been through it, but it's really true. Sometimes it seems like Rebecca was never here, and sometimes I can't believe she WAS here and that she actually died.

Monday, March 04, 2002 at 5:48 PM

Well, today our precious little angel would have been 6. It's really hard to believe.
I will always remember her as she was, of course, so as time goes on and more birthdays come, she will still be 4 in my heart.
Today, I watched videos of Rebecca from February to June of 2000. It was the first time I had seen them since her last birthday. I have wanted to many times, but it just seemed like it would be too difficult. The last part of the tape was recorded just under two weeks before she died, and she looked so miserable. It amazed me
how much sharper it made the memories of her; I had almost forgotten that unique quality her voice had and some of her incredibly expressive expressions. In most
of the videos, she seemed to be happy in spite of her illness, and that's the way
I want to remember her.
We picked Alex up after school and went to
the cemetary. We brought flowers, shiny beads, a necklace, and a beaded girl that
Alex had made for her. We each let go of
a balloon and watched them fly away until we couldn't see them anymore. I hope Rebecca grabbed them and is playing with them somewhere.
We decorated a cake I made with lots of sprinkles the way she liked, and will be eating her favorite food for dinner -"Newport Seafood Special Lobster", which we
have not had since she died.
It was nice that so many people remembered her birthday with phone calls, emails and flowers.
I know how much she was loved by so many.

Sunday, December 09, 2001 at 11:47 PM (CST)

Tonight was National Children's Memorial Day. We went to a candle lighting ceremony
put on by Compassionate Friends in the park. It was very cold and we all huddled under a gazebo to protect us from the rain.
We lit candles at 7 PM and then commenced the program with readings and songs. I was so proud of Alex. He read Rebecca's dream over the microphone to the whole group and did it beautifully. These were his words:

"My sister, Rebecca, was 4 years old when she died of cancer last year. She was in the hospital for the last two weeks of her life. My mom was always with her.
A few days before she died, she woke up suddenly from sleep in the hospital. She was already on oxygen but excitedly and breathlessly told my mom about her dream. She said she was in a special place with raspberry and blackberry bushes, a tree with jewels on it, and a waterfall going into a pond with red rubies and red pearls. There was a garden with green onions, radishes, chile peppers and pork.
There was a rainbow you could see every day and there was always a perfect sunset. Best of all there was a place you could camp out. Her dream was very vivid and she repeated over and over how it all looked. Then she went back to sleep.
I think that could have been heaven for her. I hope she's having fun in that place now. We miss her very much."

I think that pretty much says it all.
I know I've been thinking about her and missing her a tremendous amount lately.
I just wish she could be with us again.
She was such an amazing little girl.

I am expecting another child in April, and it is going to be a little boy. I think Rebecca would have wanted it this way.
She was and will always be my one and only precious girl.

Monday, July 09 at 23:46 PST

Yesterday was Rebecca's unveiling. Rabbi Meyers was able to do the service at the graveside and it was very moving. It was incredibly sad, but I think also a beautiful tribute to an amazing child. Here is what Alex wrote and read by himself:

Remembering Rebecca:

Rebecca giggled at jokes. She liked Pokemon a lot.
We played together all the time. We were great friends and I really
loved her. I can't believe Rebecca died at age 4, because most kids
don't.

Sometimes, mommy feels sad about Rebecca, but I cheer mommy up by
saying Rebecca is having fun in Heaven.

Then, the Rabbi read what I had written; I'll put a copy of it here as well:

t's hard to believe you've been gone from this earth for a whole year,
my precious angel.
You still live in my heart and are part of the air that I breathe.
Sometimes, your face and smile and voice are so vivid in my mind that it's
as though you never left. But then the real silence reminds me. I miss
you so much. And I hope that one day, I'll be able to see you and hold
you and hear you say "mommy" again.

How can I go on without you? Many days, it is a challenge,
to be sure. But then, I try to remember how much you loved life and
how you lived each day to the fullest. I remember your passion for music
and dancing, for flowers and beautiful shiny things. I remember how you
would make the best of even the worst situations, and somehow always
manage to have a good time. I try to look at things as you would have,
to appreciate them in a way I never would have before.

I feel lucky that you were my daughter. How could someone
so young, who had lived life for such a short time know so much about
what was important? And be able to share that knowlege with others in
such a delightful, innocent way. You touched so many in
your 4 years... what a privilege it was to be your mommy and feel your
love and that special bond all the time.

I am grateful to my friends and family for helping me through this
difficult time. And for knowing that it feels good to talk about or hear
stories about Rebecca, even when it makes me cry. Because when the
words are not spoken she is still always on my mind and part of me.

I often think of Becca's dream that she had a few days before she
died. Maybe she had already been to that specialplace, and was coming
back to tell me about it before she went there forever. I hope she is
playing among those raspberry and blackberry bushes, the chile peppers
and pork, and camping out by the waterfall to the sight of
a beautiful sunset.

I will never forget my sweet little girl: her smile, her voice, her
wicked sense of humor, her bravery and her zest for life.

I think that just about says it all.
I just miss her so much.

Monday, March 04, 2001 at 11:15 P.M. (PST)

It's hard to believe that today Rebecca would have been 5 years old. It was a hard day, as I imagined it would be. We went to the cemetery and let some balloons go. We sang Happy Birthday (in English and Hebrew-that was Alex's idea) and told Rebecca how much we love her. Then we went home and I spent most of the day watching videos of her and Alex beginning when she was only 18 months old. I'm so glad I have those. It's hard to believe that that adorable, energetic, happy child with the "larger-than-life" personality is no longer here.
I miss her so much. Alex and I made a cake
and decorated it with sprinkles that Rebecca would have liked. We made wishes and blew out the candles together. Alex said he wished that Rebecca was having a good time in heaven. I told him I wished that I would see her again. And Rick said he wished that there would be some miracle and Rebecca could be back with us.
Every day is hard and painful, but her birthday was a day without distractions where we could just focus on her. That made it a particularly sad and poignant day.
Lots of people called to let us know they were thinking of us and of her. That meant a lot to us, though I didn't really feel like talking to or being around anyone. I just wish I could hold her and hug her again.

Wed Jul 12 6:19:03 CST 2000

On Friday, July 7 at 10:30 A.M. our
precious daughter, Rebecca Miriam Guzner,
died peacefully while holding our hands.
We miss her terribly. Her service was
on Monday and was as beautiful and emotional
and moving as could be.
We are going to make a book of remembrances
to honor her memory.

Wed Jul 5 3:49:28 CST 2000

It's been a long time since I've written
and a lot has happened. Unfortunately,
most of it has been bad.

Rebecca continued to deteriorate at home
and needed radiation to her abdomen after
developing an obstruction of her bile duct and vena cava. This resolved just as we
were admitted to do a trial of monoclonal
antibodies last Sunday. I had noticed the
night before our admission that Rebecca seemed to have an increased respiratory
rate and her lung exam had changed. A
chest x-ray showed a new large mass which
had developed in only a few days (since
her last scan). Needless to say, we were
dumbfounded. We were given the choice of
providing comfort measures only or to try
a course of radiation to the chest to try
to shrink the tumor and relieve the obstruction there causing pleural fluid.

We opted to try the radiation. On her fourth
day of radiation , the antibodies were
started when there had been no change in
her exam or x-ray. Soon, however,
she began to need oxygen and things became
worse after that. Now she is on 100 percent
oxygen by mask just to keep her oxygenating
at 90 percent, the bare minimum. She is also
on a large amount of morphine to keep her
sedated in addition to benadryl and thorazine. She seems comfortable now and
has been pretty stable since yesterday evening. We know she cannot survive this
disease but we are having a hard time saying
goodbye. She has been pure joy to us and
all that know her. We will miss her terribly. Still hoping for some kind of
miracle to the end.

Wednesday, June 14, 2000 at 12:33 AM (CDT)

Rebecca has continued to feel lousy for the
most part, with a few occasional moments
where she seems more animated. She's
mostly in bed or on the couch.
She's been eating, but remains on the morphine pump and often needs extra morphine or benadryl when she eats. She
was put back on TPN and her liver enzymes
went way up even after it was stopped.
She also became jaundiced, prompting an
ultrasound yesterday which showed dilation
of her common bile duct. She had a CT
scan tonight, but we won't find out results
until we see Dr. Miser tomorrow morning.
MIBG is on hold until we figure out what's
going on and whether the three cycles of
irinotecan and cisplatin she's had have helped. On the positive side, Dr. Miser
feels that her tummy is less distended and
the tumor area is less prominent. Her LDH
has also drifted down from 4000 to 2000.
If it's working, we might continue the
cycles before doing the MIBG.

I hope she cheers up soon. It's hard to
see her feeling so bad in bed all the time.
I miss her happy smiling self.

Tuesday, May 30, 2000 at 12:59 AM (CDT)

Rebecca continues to be in bed most of the
time. She still has abdominal pain fairly often but is feeling better since being started on the morphine pump a week or so ago. She still asks for benadryl every two hours or so which seems to help her pain and relax her. She started a new type of chemotherapy on Thursday since we didn't
feel that she was making any progress on the
oral VP-16. She tolerated the irinotecan
and cisplatin well and went home from clinic after a long day. Her appetite was poor for the first couple of days after the
chemo, but it has picked up recently. She
was taken off of the TPN last Tuesday because her liver enzymes were elevated,
probably from the TPN (we hope).
Tomorrow we will recheck them and see if
they have come down. She looks very thin
now; as thin as we've ever seen her.
Her spirits have been a little better in the
last two days, but she still is far from
being her usual happy self.
Duke is obviously on hold for now.
We are scheduled for another cycle of chemo
on Wednesday. I don't know if she will have
a scan anytime soon. We just hope she
starts feeling a little better, getting up,
and smiling more.

Wednesday, May 17, 2000 at 01:25 AM (CDT)

Well, a lot has changed since I wrote only nine days ago. We were all set to go to
Duke on Sunday morning. Our bags were packed. Rebecca hadn't been feeling too well Saturday, but we thought that she'd
still be able to go. Saturday night was
terrible for her. She had increased abdominal pain and nausea, and was up the
whole night getting morphine and benadryl
to try to control things. At 6 A.M., it
was clear that we wouldn't be able to go.
Instead we got admitted to the City of Hope
after an x-ray showed dilated loops of
large bowel. She felt better the next day
after being started on a duragesic patch
and getting an enema and so we were sent home on Monday evening. Unfortunately, a
CT scan showed the tumor had again increased
a small amount in size. And now we have
lost our place at Duke for MIBG, at least
for this week. We are still hoping (and
pushing) to go as soon as possible. She
is more comfortable now, but still has
intermittent pain. She doesn't have an
appetite and when she does try to eat or
drink, feels full and has pain, sometimes
requiring morphine. She has lost a lot of
weight and looks very thin. Tonight she
said, "I'm totally full and wiped out."
(She apparently learned "wiped out" from
those educational Pokemon videos) I hope
she has a better day tomorrow. We'll find
out then when we might be able to go to
North Carolina.

Sunday, May 07, 2000 at 11:51 PM (CDT)

It's been quite a while since I've written.
Rebecca took the fenretinide three times a day for a week. When she
started it, it was felt that she was quite stable and that it would be a good time
to try this. During the week, she seemed to be increasingly lethargic, weak, and
with decreased appetite. A few days after finishing, we repeated a CT scan
which showed that the tumor had again increased in size. Last Friday (9 days
ago) she was started on oral VP-16. Since that time, she has been more energetic
and has been eating more and gaining some weight. We are encouraged by
this and are now waiting to hear when we will go to Duke in North Carolina
for her MIBG treatment. We hope that this will shrink the tumor enough to
either do a debulking surgery or to use the monoclonal antibody at that point.
Today she went to a salon in Beverly Hills and had a makeover. It took
her a while to get warmed up to the event (planned by Chai Lifeline); she
first took one look and said, "This isn't what I expected. This is no place for me."
Then she had a great time with makeup and nails and a beautiful headband.
(see photo album).

Friday, April 14, 2000 at 01:04 AM (CDT)

Yesterday was Rebecca's CT scan following
her third cycle of ifosfamide and VP-16. Unfortunately, the results were not what we
had hoped. We really didn't expect that the
tumor would shrink, but would have been
happy if it had just remained stable.
It seems that the tumor may be a little bigger, though it is a subtle change.
In addition, she's been having low grade
fevers for at least a week, which are not
explained. Dr. Miser is worried that
all this combined with her weight loss (she's now only 10.6 kg) may mean the tumor
is more active.
Now we will try fenretinide while waiting
for MIBG treatment. The earliest opening
is in early July (if Rebecca is accepted into the S.F. protocol). She is also going
to have a biopsy (in Houston?) in order
to try to grow the tumor to make a vaccine.
Today Rebecca seemed pretty happy, though her energy level was a little low.
We went to the grocery store and then to a
friend's house. Tomorrow she might visit
her old school and go to see a movie.
Her appetite could be better. We are trying
to take things one day at a time.

Friday, April 14, 2000 at 12:54 AM (CDT)

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----