a wish for ava

7/29/2008

so much has happened since ava has gone....many many dark days and nights, sharply punctuated by the discovery of vows broken, and ultimatums were given.....i have looked down the barrel of a loaded gun and placed a morgue toe tag on my child who had such a rare form of non-genetic cancer.....its a wonder that one can carry on.  but i figure, in the big picture, the hardest thing that i have ever had to do was help my child to not be afraid to help her let go and die.  to tell her "its ok, dont be scared, no more pokes, no more cancer bug"  everything else is just on the surface...ive lived through the worst pain a parent or even a human being can possible imagine.  and i was powerless through it all. nothing can compare to the pain of losing your child.  one who was so innocent.  one who never did anything wrong to anyone, didnt smoke, take drugs, etc...i know ava knew she was so deeply loved by larry and i.    the fact that she is no longer in pain....is our only peace.  i look at her pictures from before she was diagnosed and see the pictures just before she died and realize just how much this disease did to her.  at her moment of death, her face contorted in so much anguish.  its an image that is engraved permanently in my mind.  she knew what death was by watching so many movies about dinosaurs.  she fought as hard as she could, and rather than be sad for her, we have to be incredibly proud of her.  these kids that fight, do the best they can.  they know when they are too tired.  they know when to stop.... just like a parent whose child brings home a great report card, we had a little girl whose report card has A+ straight across for her strength, bravery, fearlessness and love...

someone dear told me: "you can choose to have your heart break open, or stay closed after being smashed into a million pieces"  i guess we have chosen to have it break open.  we are expecting a little boy end of the year, the only true connection to ava.  this little one was conceived in ventura, a place where we took ava when she was just a few months old.  her first laughs were there and larry's first ava tattoo inked.  the city holds very special memories for us. 

we only get one chance at life.  ONE CHANCE!  like my 3 1/2 year old daughter whose life was cut way too short,  we all have to live like there is no tomorrow.  sometimes life is not good, or fair,  but one shot is all we have.  LIVE AS IF THERE IS NOTHING ELSE THAT MATTERS EXCEPT THIS MOMENT RIGHT NOW....make each moment count. 

ava did.

little goose, mommy & daddy love and miss you sooo much.


9/23/2007

ava would have turned 4 years old today. right now, i should be busy wrapping her presents and getting ready to decorate the side room at palermo. 

instead, i spend today crying, reading about other children who fight for their lives, and looking at many pictures of her from birth through death.   i keep a picture of her when she was first diagnosed with me and always look at it before i go to sleep.  in the picture, ava is very weak, with 2 black eyes from tumors pressing on her skull, her tiny arm wrapped with bandages to prevent her new Picc line from moving out of place.......yet she has a smile on her lips.  surrounded by so many toys that were given to her. still, the photo reminds me how during that year, she was so incredibly close to death and how through the magic of chemotherapy, radiation, transplant, surgery and many other things, she was given a second chance, if only for a year more....we had no idea  how short her battle with neuroblastoma would be.  she seemed on the outside to be doing so well.  you would have never known that her bone marrow was 80% packed with cancer by the way she laughed and ran and danced. 

in her last few days, she began asking me how she was when she was just a baby,  sometimes at home, she crawled and made funny faces and laughed as i told her "you're not a baby anymore" she asked me to bring a picture of her as a baby to the hospital (we always brought various pictures to be taped to the bedside wall)  she perhaps was sending us a message to remember her like that, cancer-free.  

in the year that she fought this cancer, she really lived.

a nurse once told us, that sick children know when to stop.  ava fought this as hard as she could, and did her very best to make it look easy for a year.  then she knew when to stop.  we have to remember that to get through each day.  that she did her best, and that she is now and forever pain free.

happy birthday ava.  we are so proud of the way you fought as hard as you could and so lucky to have been your parents.  we are so inspired by they way you lived and laughed despite everything you were going through.  you made it all look so easy, without a care in the world.  you were the bravest and strongest little girl in the world, and those who met you will forever be changed by your spirit.

mommy & daddy love and miss you so much. 
we will never be the same without our little goose.



september 2007

please remember that this is pediatric cancer awareness month.

i have chosen to donate $10 each month to lunchforlife.org

i found out that less than 3% of all donations to the american cancer society go towards children.  it's really depressing....so i have chosen lunchforlife as my cause.  i hope you do too.  there is a "giving tree" in her name that is set up  there too.



4/17/2007

rest in peace my sweet, beautiful little fighter.  no more needles, mri's, ct scans, chemo, zofran, picc line, oxycodone, etc. no more pain.

little ava jaymes cipriani passed away today surrounded by her family and loved ones.  a large tumor was pressing down on her brain, which caused her to lose her speech, motor skills, and ability to breathe.

slowly her vital organs shut down due to her body's inability to function.

our darling girl was the bravest fighter against her enemy.

ava taught us life is beautiful..... live, love laugh, listen.

ava, you  will never be forgotten in all of our hearts.



4/8/07

ava received her Mibg treatment last month at ucsf hospital in san francisco.  so far, so good.  it seems to have relieved some of the pressure in her skull.  we go in for scans later this month to see "internally" what is going on....hopefully there is reduction of tumor, and we can get the Mibg treatment again next month.
the treatment itself was better than expected. i was able to spend a good amount of time in the room as the radioactive material evaporated.
ava was a trooper, and with the aid of a baby video camera, did quite well.  the doctors and nurses at ucsf were amazing. 

we have been going to the cancer center in LA every few days to get blood and platelets since her marrow is still healing.  she is still on some heavy pain medication, which we hope to discontinue soon. her appetite has picked up, and she has gained a pound, after losing about 5 pounds during the treatment.

lauren's beanie drive was a huge success, collecting over 200 beanies (so many hand-knit!!), handmade blankets and knitting supplies.  our heartfelt thanks to dream dinners in tustin, the lost bean, tustin pharmacy and red hill elementary.   they were passed out to the kids in the intensive care unit at ucsf, Cedard-Sinai (los angeles) and more will be distributed to CHOC (orange county),  and CHLA (los angeles). 

also thanks to all the girl scout brownies and daisies for the toys, crafts, cards and special gifts!  it makes her so happy to know she has friends!

we hope everyone has a nice easter.  give your kids an extra hug today from all of us!


2/14/07

we've just returned from university california san francisco hospital (ucsf), and learned that cancer is literally still everywhere in ava's bones and marrow.  she will need to undergo an experimental form of Mibg therapy mid-march.  in fact, she will be the 2nd child in the country to receive it.  though we are very nervous,  it's necessary since her tumors have not responded to traditional therapy.  she will be isolated in a room that has solid lead walls around her, and will be injected with a radioactive isotope and have high dose chemo at the same time.  this study will last approximately 15 days. we have total faith in the doctors who will be treating her, as they specialize in neuroblastoma, and its research.
she will be under the care of dr. kate matthay and dr. louis chesler, both leaders in neuroblastoma research.

In fundraising news,  Ripple Kids Inc. http://ripplekids.com is proudly  supporting her cousin Lauren in a beanie (cap) drive for Ava between Feb 15th - Mar 15th.  If you bring in a new or hand-knit beanie to Dream Dinners (the store is located on 17th Street in the French Quarter Shopping Plaza in Tustin), you will receive a FREE medium meal coupon to use toward your next order.  

Also, the Tusin 2 Girl Scout Service Unit will be collecting new/gently used toys and dvds.  Ava will undergo an experimental radiation treatment where any toys/dvds she brings into the room will become highly radioactive, and be disposed of after she leaves.  In addition, she will be alone for most of the time, since an individual will only be allowed a maximum of 45 minutes per day with her, so needless to say toys/dvds will be a great distraction.  Beanie caps, toys and dvds can be dropped off at Red Hill Elementary School located on Red Hill Avenue, north of SE Skyline.  This will run until the end of March.

Please keep her in your thoughts and prayers.

1/5/07

happy new year everyone.  its been a while since ive updated this...  ava's stem cell transplant went really well despite both her picc and central lines getting infection, and a blood clot in her vein.  we have been very busy with a lot of tests this week.  one test has shown something in her skull or head area.  more testing has to be done to determine what exactly it is. we thank you all for all the loving and supportive messages. getting ready for the wishing well show on jan. 20th.

10/16/06

today we start the stem cell transplant process to rescue ava's bone marrow.  estimated hospital stay will be 6-8 weeks.  please keep our family in your thoughts.  thank you.


10/12/2006

the wishing well show will be at monkeyhouse toys january 20-31st. 2007
proceeds go towards ava's medical bills.

a ton of artists will be contributing pieces ranging from custom hand painted art toys, paintings, handmade plush, photographs, sketches, etc. 

we will have various goodies by:


johnette napolitano (concrete blonde)
kathie olivas
dalek
rc44
joe ledbetter
squidboy (shan michael evans)

edzepln
mark ryden
robt. williams
bilbetsovic
dave wakeling (english beat)
lummage

motorbot
brent nolasco
phuek
kozik
soopaj

doktor A
tim biskup
j2xa

voidx
joules
drilone
greg "craola" simkins
apina

lou pimentel
robbie busch
huck gee
henry brazil
luke chueh
benjamin

atomika (jason jacenko)
mimic
blinky
jim koch
monster decay

and many more...