Journal

June 30th, 2008

Dear Friends,

Winter time has come upon us in Argentina. This is kind of a new feeling, given that we hadn't been here for the last two winters.

Even so, we still miss Alexia very much. Her presence goes beyond seasons, temperature or leaves' colors.

We are fortunate to have Sofi with us. She warms and lightens up our days! Alexia continues to be part of her daily games and our nightly prayers.

A few days ago, we celebrated Sofi's 3rd birthday with a lot of friends and family members. She had a blast!

Ursula had prepared a beautiful "animal" theme and lots of food. This is a picture before everyone arrived:



The day after the party, we went to see Alexia. Sofi released several baloons for her. Coincidentally, it was also Father's day. Lots of mixed feelings...

Two days ago, it was 7 months since Alexia went to Heaven. I put together some pictures in honor of Alexia that I want to share with you:



Thanks so much for always being there!

With love and gratitude, and missing Alexia,

Ignacio



June 8th, 2008

Happy Birthday, Ursula!!

Dear Alexia,

Yesterday, we celebrated Mummy's birthday.

We went out for lunch and then visited your grave. Sofi left some pretty flowers for you. We know how much you enjoy birthdays and that you shared the whole day with us!

Also, Mamama and Papapa were there with us, having arrived from Panama to spend a few days in Buenos Aires.

Sofia's birthday is coming and we are preparing a big party for her. She continues to talk about you everyday; a couple of days ago she even told me: "Daddy, I miss Alexia". It's amazing how Sofi is able to express her feelings about you, and fortunately, almost always it is in a positive way!

This is your gift for Mummy: a sample of how much you loved her, always!



We miss you very much. Thank you for always watching over us!!

Love, Daddy


May 28, 2008

Six months ago today…

My Sweet Princess,

Not a day goes by where we don’t talk about you, and remember your amazing smile. Your little sister is growing up so fast… she LOVES watching mini videos of you stored on my computer, and at least once a day asks to watch them. She also likes to include you in her nonstop conversations!

I love you with all my heart and my life is just not whole without you.

Your Mommy

To all our Friends,

We have been traveling all month long. We returned from NYC & Durham last week. Sofia had fun with her Uncles Pepe & Juancho in the Big Apple, and we also got to see some friends. We then made a quick stop in Durham to see our friends, Valeria & Gonzalo Castro, and especially their daughter, Sofia. They were our neighbors during our years in Durham with Alexia, and many of you already know that Sofia’s leukemia returned and cannot be cured by traditional medicine.

Many might wonder why we would ever go back… for me, North Carolina will always be a special place. We have wonderful memories with Alexia there. And many amazing friends. Even though we did not get to see all the people we had planned on seeing (my Sofia got sick with a nonstop cough), we plan to return next year in honor of Alexia for the Rainbow of Heroes Walk in May. (By the way, a HUGE thank you to all those who donated in honor of Team Alexia the Princess Warrior this year!)

We are now in Miami and will be returning to Argentina next week… My mother joined Sofi and I for a week so we've been quite busy.

Thank you for your continued support and love!

With love, U.



May 18, 2008

Dear Alexia,

Yesterday, it was your cousin Martina's 1st birthday! She had a beautiful birthday party, with many children, friends and family.

You would have loved the party: a large inflatable castle, a pinata, lots of toys and obviously, your favorite: blowing the candle! Martina enjoyed it very much and she was even trying her first steps.

We missed you very much even though we know that you were there. We also missed Sofi and Mummy, who are in Durham visiting many of our friends there, after a few days in NYC with Uncles Juancho and Pepe.

A memory of the good times you spent with Martina

I love you very much!!

Papi


May 11, 2008

Dear Alexia,

Today we are celebrating Mother's Day. We miss you so much, even though we can feel you taking part in the celebration from Heaven.

I know how much you love Mummy and how grateful you are for all that she has done for you, for Sofi and for myself. We are very fortunate to have Ursula as Mummy!

We are in Miami, after spending a great week in California. We got to see many friends and their families, from all over the world. Sofi had a great time, as all of our friends had daughters! We want to specially thank our friends Connie and Joaquin and their wornderful 3 daughters for hosting us in the Bay Area! We missed you, Alexia, very much, thinking how much you would have enjoyed each moment, but on the other hand, we felt your presence and company all along the trip.

I'm heading back to Argentina tonight, while Sofi and Ursula will stay in Miami a little longer, including escapes to NYC and to Durham, NC.

We want to wish a happy Mother's Day to all Mums, and especially to my Mum Ali, to Mamama Vicky and to Aunt Mari!!

Thanks so much to all our friends for your continuous support!

Love,

Ignacio


April 28, 2008

5 months in Heaven...

Seems like only yesterday I was with my Princess Warrior in clinic hearing her laughter and making silly video clips on my computer.



I miss you SOOOOOOOO very much, Princess.

April 27, 2008

Dear Friends,

I know many of you have asked for me to post pictures of Sofi, to see how she is doing. Today I will post some of my favorite pictures of Alexia throughout her fight against cancer. Followed by a few pictures of Sofi all grown up;)

This is another one of my favorites... I MISS that SMILE!

Being silly with mom:

And those EYES:


And now I will post some pictures taken in the last two months.

This is how we celebrated Ignacio's birthday in February:


Sofi's 1st day of "pre-school":


LOVING her riding class:


Thank you for letting me share our Princess Warrior and her little sister with you all!

Love, U.


April 23, 2008


Dear Friends,

Even though this year we will be unable to personally attend the Rainbow of Heroes Walk at Duke NEXT weekend, please remember the importance of this event for the Family Support Program at Duke. We will continue our tradition to raise funds for team Alexia the Princess Warrior in honor of Alexia. You can read about all the amazing things this program does for transplant kids and their families by clicking on Rainbow of Heroes Walk homepage or donate directly by clicking on Rainbow of Heroes Walk donation. (Make sure you click on "Alexia the Princess Warrior" team.)

The Walk is on May 3!

THANK YOU!!!!!!!!!!!!!!

Love, U.

p.s. Pictures of Sofi coming soon;) Also pics of Alexia that I've never posted before:)

April 21st, 2008

My dear Alexia,

Last Saturday, Aunt Luciana and Pablo got married in Tandil. Luli (as you always called her) was beautiful in her white gown, and the celebration was amazing!!

Sofi walked up the Church aisle together with Martina and Pablo's cousins, just before Luli and Abuelo Coco. Sofi acted as the little Princess she is, walking straight and with elegance while hundreds of people were watching her. I know that there was a little angel, a brave sister, showing her the way and giving her courage! We all felt your presence throughout the celebrations!

There were many people at the party. Even Mamama and Papapa had flown in from Panama to be with Luli, Pablo, Ali, Coco and the rest of the family and friends.

Mommy and Sofi were also beautiful in their party dresses. I even got to dance the waltz with Sofi, just the same way we used to do it together, and she loved it, just as much as you did!

Alexia, we missed you very, very much at the wedding. When Luli and Pablo announced their engagement about a year ago, your Mommy and I kept our hope high thinking about how much you were going to enjoy the wedding when the time came. Even though it wasn't in the way we had hoped for, you got to be part of and enjoy the celebration. Luli and Pablo showed several pictures of you and I shared two brief videos of you joking around with both of them. They are your gift to them. They are also a gift to all of us, and yet, other examples of your courage, your spirit and your joy of life.





In a few days, Sofi, Mommy and I will be traveling to California for my 10- year reunion at Stanford. I know that you will be there with us as well, as it will always be the case.

Thank you for being my inspiration and source of strength, every day. For being my Alexia, the Princess Warrior.

I love you and I miss you,

Daddy

PS: Thank you very much to everyone for your messages, prayers and support!!


March 28, 2008

My Sweet Princess,

Four months today. I went to visit your burial site yesterday just in case it would be too hard to go today. I don't know why "dates" are so hard. I saw butterflies around the fountain while I was there. It was beautiful and peaceful to watch.

When I get too sad, words are even harder to come by. Just wanted to share something I received today:

"People will forget what you said,
People will forget what you did,
But people will never forget how you made them feel."
-Maya Angelou

Thank YOU, Princess, for making me feel life.

I love you, Mommy

March 19, 2008

Dear Friends,

I wanted to make an update before the Easter Holidays arrived upon us. I have mentioned before how hard it has been for me to write about our grief and put into words my feelings, which I believe, are much stronger than words could ever express. I do want to thank everyone that continues to pray for Alexia and our family. I will not even try to explain the myriad of feelings that continue to be part of our daily life. Instead I will try to update a little bit on what been going on in our lives... I try very hard to stay positive, and busy… very busy. I still struggle with little things like keeping up with incoming e-mail, and answering back, as well as writing out thank you cards. Those things, I am failing miserably.

There are a few things, though, that we have been doing that keep us going. For one, we enrolled Sofia in “school” and she loves it! She started 3 weeks ago, and despite the fact that it was bittersweet for me (since Alexia never got to go), I found a kindergarten school very close to home which I truly love. It is literally 4 minutes away by car! She goes every afternoon for a couple of hours to play, paint, sing, etc. with a group of five 2-3 year olds. She even had a friend from her class over at our house one day to play with after school! She is growing up so fast and we are enjoying every second with her. We continue to keep Alexia’s memory alive with her by sharing stories and always mentioning something Alexia did to make us laugh or say. Sofia continues to ask to watch some of Alexia’s mini video clips from my camera, and some when Sofia was a baby and Alexia used to kiss her many times. They are precious memories.

We are also trying to make new memories for Sofia to have as well. She started horseback riding lessons two weeks ago and loves it! She gets to ride on a horse led by a rope with an instructor and with a group of kids her age every Saturday and Sunday. She was so proud her first day, making sure Ignacio and I watched her the entire time. Very, very cute! As for me, I started Pilates again 3 times a week (after 3 years of doing nothing). I also plan to start yoga again. The yoga part I will start after the Easter weekend and I’m very much looking forward to it. And most importantly, I do want to start running again. It has been way too long since that. I know running will be good for me, it’s just taking me too long to get started again. It will all help me to stay busy, busy, busy;)

This week, we also did something we have been working on for the past month. We transferred Alexia’s ashes from Jardin de Paz (original burial site) to Memorial. Memorial is a burial place much closer to our home and where I found a place for Alexia’s ashes next to a water fountain (with angels), and under beautiful trees behind a colonial chapel. There is also a bench nearby to sit if you wish. It’s hard enough going to your baby’s burial site, so I wanted something more “special” for her. I think watching the water fountain next to her burial site with the angels gives me more peace now. Even though I knew it would be hard to place the ashes again in the soil, I felt it was something we had to do.

We will be traveling to Tucuman (northern part of Argentina) for the Easter weekend to visit a very special friend I met many years ago when we first moved to Buenos Aires. It should be a beautiful trip and we are very much looking forward to it. We will also get to see our other Tucuman friends who live here but will also be flying to Tucuman for the holiday weekend.

Ignacio and I have been lucky to be surrounded by many friends and family members, and have started to attend a few social gatherings. We even attended another wedding this past weekend. It was a beautiful day wedding, and Sofia got to go and dance the day (and evening) away. She loves to dance! (Just like Alexia used to love it!) I got to see my good friend from Peru whom I haven't seen in 6 years and her entire family. (Her brother got married with an Argentine girl). It was very nice for me to be able to attend.

Wishing everyone a safe holiday weekend!

Lots of love, U.

p.s. I miss you SOOOOOOOOOOOOO much, Princess!!!!

Thursday, February 28, 2008

A special treat: one of my favorite pictures of Alexia. (I don't think I've shared it before.) This was taken on July 2005. Sofia had been born two weeks before and Alexia had just finished the roughest part of her treatment. Those EYES...! I will never forget those eyes.



Wednesday, February 27, 2008

"When a parent dies, you lose your past; when a child dies, you lose your future." - Anonymous

"Children are not supposed to die...Parents expect to see their children grow and mature. Ultimately, parents expect to die and leave their children behind...This is the natural course of life events, the life cycle continuing as it should. The loss of a child is the loss of innocence, the death of the most vulnerable and dependent. The death of a child signifies the loss of the future, of hopes and dreams, of new strength, and of perfection." - Arnold and Gemma 1994, iv, 9, 39

As they also say, we are not getting over our grief (one never really does), instead we are trying to find ways to get through our grief one day at a time. I am often asked how I’m doing. I have good days, and I have not so good days. The not so good days are actually pretty bad, but somehow I manage to make it. I try to keep busy alot.

On the outside, I am trying to make things as normal as possible for Sofia. Our "new" normal is actually very different than anything we experienced before as a family. A piece of our family is missing, a very BIG piece, and that hole is felt everywhere. Even the simple task of driving alone in the car reminds me that one car seat is missing. As Sofia swings away in the backyard (one of her favorite things to do everyday), one swing is empty. The list is endless, and my grief for the loss of my Princess Warrior will be with me until the end of my journey on this earth.

I actually don’t ever want that pain to go away. The pain I feel keeps me close to Alexia, and reminds me everyday of her journey with us. I especially miss her laughter and her smile. And all those little things about Alexia that made her so special. Her memory is alive and vivid in my heart, and I was honored to be her mother.

Tomorrow will be three months since Alexia went to Heaven. They have been the hardest months in my life.

I love you, Princess!

Love to all, U.

Saturday, February 16, 2008

One year ago, Ursula and I made the decision to move back to Durham to try to give Alexia a chance for a second transplant, as she wasn't achieving remission.

Throughout Alexia's fight, we tried to stay focused on doing our best to support Alexia and give her the best possible chances to defeat cancer. This focus, together with Alexia's strength, resilence and joy of life, helped us move forward without paying much attention to some of the side effects that the fight was having on Alexia.

Now, by just observing how Sofia is evolving and growing up, we realize how much harder it was for Alexia and how many "normal things for a kid her age" she missed. However, we have no regrets. On the contrary, we are happy that we were able to get the extra time with her, and enjoy her company, her laughter and her love.

We miss Alexia dearly. The three of us are working on getting back into a new, more "normal" routine. Sometimes this helps, sometimes it doesn't.

We think that Sofia also had a hard time realizing we were back home from our trip and that Alexia was no longer with us. As soon as we arrived, Sofi started asking why Alexia didn't live in our home. After a few days, she stopped mentioning Alexia with the same frequency as before, in which she acted quite weird. Probably, it was her reaction to so many changes, including the realization about her sister not being here with us.

Lately, Sofia has been mentioning Alexia more and more, in a more natural way, and always highlighting the fact that she is in Heaven, playing with the Angels. We've gone to visit her grave, and Sofia has released baloons for her.

Ursula and I have been able to start watching some mini videos of Alexia taken from our digital camara. At the begining it was imposible. Now, it is still painful but we treasure hearing her voice and feeling as if she still were among us.

Thanks for all your messages, prayers and support! We know that Alexia, Sofi and your support will help us navigate these first, more difficult times, until when we can truly honor Alexia's memory.

Love, Ignacio



Sunday, January 27, 2008

Dear Friends,

Tomorrow marks Alexia's two-month "Angel-versary". I came across this poem and wanted to share it. Even though it brought tears to my eyes, it did manage to bring me a smile at the End.

“My Mom Lies”

- Author Unknown

My Mom, she tells a lot of lies
She never did before.
From now until she dies,
She'll tell a whole lot more.

Ask my Mom how she is
And because she can't explain,
She will tell a little lie
Because she can't describe the pain.

Ask my Mom how she is,
She'll say, "I'm alright".
If that's the truth, then tell me,
why does she cry each night?

Ask my Mom how she is,
She seems to cope so well.
She didn't have a choice you see
nor the strength to yell.

Ask my Mom how she is,
"I'm fine, I’m well, I'm coping".
For God's sake Mom, just tell the truth
just say your heart is broken.


She'll love me all her life,
I loved her all of mine.
But if you ask her how she is,
She'll lie and say she's fine.

I am Here in Heaven.
I cannot hug from here.
If she lies to you don't listen,
Hug her and hold her near.


On the day we meet again,
We'll smile and I'll be bold.
I'll say, “You’re lucky to get in here, Mom
With all the lies you told!"



Thursday, January 24, 2008

Dear Friends,

I have been failing miserably at updating our life without Alexia in this journal. Just writing those words brings tears to my eyes. Ignacio has made a few posts, and I did actually manage to write a long update on Alexia's birthday but due to a computer error it was erased and I lost it all. It was too hard to rewrite it again (hence the short message on that day), so here I am almost two weeks later attempting to share a bit of what's going on again...

As you all know, we are back in Argentina. I knew coming back here would be hard, but you never imagine how hard it's going to be until you actually walk thru the house, the yard, and the neighborhood again realizing how much you miss Alexia and how much you desire to hold her again. People always say time will help heal us, but I don't believe this to be true. Your soul is left with an empty hole that will never be able to be filled again. Yes, I believe you can fill your heart again with new memories, happy memories, but the void will always be there. We do try to keep her memory alive by talking about Alexia, sharing stories with Sofia about her sister and all the little things she did to bring joy into our lifes.

Yes, Sofia is a blessed distraction but it does not make the pain any easier to bear. It does force us to get out of bed everyday, though, and make life as normal as can be for her (and for us, obviously). I found out today that there is a Summer Camp in the Club House for the 2-3 year olds that live in our neighborhood. So sure enough Sofia will likely start next week. (She is still getting over her cold so she hasn't started yet... she is still coughing a bit but no longer has fevers.) We all actually ended up getting really sick but I think it was bound to happen.

In other news, we picked up Gypsie (our dear yellow lab)from a very special person who was taking care of her all this time we were away. Thank you so much, Silvia, for taking such good care of our baby! Sofia is THRILLED, to say the least, of having Gypsie back in the house! So are we:)

Well, today I have two things to share. First, it's a song I love listening to (and I'm sure many of you have heard it)... but here is the video anyways for entertainment purposes only;) It truly describes how one feels when they "Can Only Imagine" (by Mercy Me).



Second, we met many AMAZING nurses and doctors and friends during Alexia's journey. I want to share with you what Sue (her "personal" Nurse Practitioner wrote in her honor and framed for us) in the most special frame with a picture of an elephant at the bottom of the frame (Alexia and Sue always played together and Alexia would show Sue her tummy so she could listen to her during clinic visits, and tell her that an elephant was living there...) Alexia would laugh histerically and her laughter would be contagious.

Anyways, this is what Sue wrote and framed for us in honor of Alexia:

Alexia... the WARRIOR PRINCESS

"According to Wikipedia (that's for you Ursula), the warrior princess is a strong female personality of royal background, determined in pursuit of her goals. Her prowess usually exceeds what she would be capable of in real life. Princess Leia in Star Wars was an example of a warrior princess who helped the rebel team destroy the dark side. She was beautiful and sweet... much like Alexia.

Alexia is certainly a warrior princess who has fought the dark side of this terrible disease. For 3 years, she fought internal battles with a courageous spirit and a zest for life. Some warrior princesses are evil and kill and destroy things around them leaving behind a trail of destruction. Alexia, however, won over the hearts of her "people" as special princesses do and led her "team" in waging this war against the bad cells. No warrior princess is capable of success without the support of her "team", a family that extends across generations and miles with unconditional love. Alexia's name means "defender or helper of mankind" in Hebrew. She has truly lived up to her given name. For she has helped each of us to understand the true meaning of life: to live each day to the fullest, to love family uncoditionally and say "I Love You" 100 times a day, to give lots of kisses, to laugh, to smile, and to persevere in the face of trials in our lives. And although there are many questions we do not understand, there are some things we do know without a doubt. One, that Alexia the warrior princess had her pink foam crown in clinic... I know because I have one Alexia made for me... but now she has a crown of gold. Secondly, that the time she spent with all of us has left an indelible mark across many nations and upon many hearts. We had the blessing to have our paths crossed by a sweet and precious yound lady, by true royalty, by a warrior princess." by Sue 12-1-07

Thank you, Sue for allowing me to share this tribute you made in honor of Alexia. And thank you to all the friends who continue to check up on our Princess Warrior and hold us close to their hearts.

Love, U.

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Hospital Information:

Home address:
Av Peron 2375 cc 1111
Pilar, 1629 - Pcia Buenos Aires
Argentina

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