Born January 14, 2004 Became an Angel on November 28, 2007
MY STORY Alexia Vidaguren Castaneda was diagnosed w/ INFANT Acute Lymphoblastic Leukemia (ALL) pre-B, positive MLL gene (11q23) translocation t(4;11) on November 11, 2004 at the age of 10 months. Our lives will never, ever be the same after that day.
Alexia sadly relapsed exactly after 1 year of very intense chemotherapy treatment while following Interfant 99 protocol. Due to her MLL gene translocation, her only hope for survival was a cord blood or bone marrow transplant. She started heavy chemo again on Nov. 14, 2005 to get her back into remission, however, after only ten days she had to be transferred to the PICU after severe abdominal pain. She went into septic shock, had to be put on a respirator (three weeks total), had emergency abdominal surgery (appendix and part of colon removed) due to typhlitis (also known as neutropenic enterocolitis) and an ileostomy performed, and went into respiratory distress a few days after surgery. Thanks to her strength, the great job of the doctors and nurses at Hospital Austral and God's help, she survived ALL this! She is truly a fighter.
On February 15, 2006, Alexia received an unrelated cord blood transplant. We are thankful for everyday that goes by post transplant. We are also eternally grateful to the anonymous mother who donated her baby's cord blood to save a life. The road after transplant is not easy, but Alexia is fighting everyday to beat the odds against her.
On September 14, 2006, after spending nearly 8 months in North Carolina we finally returned to our home in Argentina. Alexia continued her weekly hospital visits at Hospital Austral, where together with our team at Duke, we monitored Alexia's recovery and fight for life.
Unfortunately, on January 31, 2007, our worst nightmare became a reality once again. We learned that Alexia had relapsed almost one year post-transplant. We tried to get her back into remission, but standard chemotherapy failed. On February 20, 2007, we flew back to Duke to try to get Alexia back into remission using a relatively new drug called clofarabine.The drug worked and Alexia once again defied the odds against her and achieved remission.
On April 10, 2007, Alexia received her second cord blood transplant after undergoing 9 sessions of total body irradiation and more chemotherapy.
On July 31, 2007, a little over 100 Days Post-Transplant, our world was shattered once again when we learned that Alexia had relapsed after her SECOND cord blood transplant.
After one year of intense chemotherapy, plus two cord blood transplants and total body radiation, traditional medicine failed to cure her leukemia.
SHE WAS OUR MIRACLE!
We will try to keep our friends and family informed thru this journey using this journal. They have been a very important source of support for us. Our greatest inspiration continues to come from Alexia, who never ceases to surprise us with her bravery and courage. She's our BIG little hero! Our PRINCESS WARRIOR!
Please feel free to sign our guestbook several times. We love reading your messages!
"The Brave Little Soul" by John Alessi
Not too long ago in Heaven there was a little soul who took wonder in observing the world. She especially enjoyed the love she saw there and often expressed this joy with God. One day however the little soul was sad, for on this day she saw suffering in the world. She approached God and sadly asked, “Why do bad things happen; why is there suffering in the world?”
God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people’s hearts.” The little soul was confused. “What do you mean,” she asked.” God replied, “Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone.”
The little soul began to understand and listened attentively as God continued, “The suffering soul unlocks the love in people’s hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle - for the good of all humanity."
Just then the little soul got a wonderful idea and could hardly contain herself. With her wings fluttering, bouncing up and down, the little soul excitedly replied, "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people’s hearts! I want to create that miracle!"
God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you.”
God and the brave little soul shared a smile, and then embraced. In parting, God said, “Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed.”
Thus at that moment the brave little soul was born into the world, and through her suffering and God’s strength, she unlocked the goodness and love in people’s hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys - some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Peace and love reigned. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased....
"If Children have the ability to ignore odds and percentages, then maybe we can all learn from them. When you think about it, what other chance is there but to HOPE? We have two options, medically and emotionally: give up, or FIGHT LIKE HELL".-Lance Armstrong
Click here to see a special slideshow of Alexia in pictures!! HOW CAN YOU HELP? 1) DONATE BLOOD & PLATELETS!! Prior, during, and after treatment, Alexia has been and will continue to receive numerous amounts of blood and platelet transfusssions. Donate to your local hospital or Red Cross and help save a life! 2) DONATE YOUR BABY'S CORD BLOOD!! Please consider donating your baby's cord blood to a public cord blood bank. There are many children awaiting transplant that do no have a match, and maybe your donation can help save that child's life. Thank you all for your support, generosity, and love. Muchas gracias por su apoyo y generocidad.
January 14th, 2013
Happy 9th birthday in Heaven, princess Alexia!!!!
My sweet Alexia,
Today, we celebrated your 9th birthday in Key Biscayne, FL. I can't believe that you would be almost in double-digits by now!
Your sister Sofi -as good a party organizer as your Mum- made all the arrangements for the celebration to be memorable. She prepared a list of things for your birthday: the cake (an ice-cream cake, actually, as it was our tradition when we celebrated all our birthdays when we were at Duke), candles, decorations, gift bags (Sofi prepared bags for boys and bags for girls!) and balloons (it isn't your birthday without pink and purple balloons!).
We celebrated by the beach, at sunset. It was windy, but you guided those 9 balloons that Sofi, Mati and Gonza released so they flew clear of the palm trees, the buildings and elevated to Heaven as we could see them from a distance.
Alexia, today you even played one of your tricks to let us know that you are always around! When your Mummy bought the balloons, she only bought 8 -time flies and she thought that you were turning only 8. When she realized that she had 1 missing, went back to buy another balloon, feeling a little bad that she had missed one. However, you showed your Mummy and all of us that the number of balloons isn't important when you had that 9th balloon deflate before we released them!
We miss you a lot little Princess. Celebrating your birthday at Key Biscayne was particularly special for us. In this beach you had your first contact with sand and the sea when you were 5 months old! Also, I remember very well when you, Mummy and me came to Duke for your 9-month post 1st transplant check-up and stayed at tios Ana Maria and Pedro's appartment in Key Biscayne. It was only for a couple of days and the weather wasn't that nice -it was November. Our last morning there, I took you to the beach, even when it was cold and windy. We both stood right where the sea water met the sand, looking at the waves. We stayed there for 10 minutes, and before leaving, I rolled up your pants and we both waded the small waves. You didn't care about the cold water. You just wanted to jump and were so happy! How would I love to be able to do that once more, together, with Mummy and your siblings...
We know that you are always watching over all of us. We can feel your presence. However, it isn't the same.
We love you and we miss you, dear Alexia, our Little Princess Warrior. Now that you are 9 years-old I may have to remove the "little" from that!
Mummy, Sofi, Mati, Gonza and Daddy
November 28th, 2012 Dear Alexia,
Today it's 5 years since you became an angel.
Our Princess Warrior, we miss you very much and wish you were here with us, sharing plays with your siblings and making us happy with your laughs and jokes!
Thank you so much for being with us every day, watching over all of us!
Alexia, we always remember you and what you taught us: to never give up, to always have a smile on our face and to make the most of each moment!
We love you and we miss you, our sweat Princess!
Here are some recent pictures of our family:
The Queen and her earthly Princess
Dear friends, thanks so much for your continuous support, visits and messages!
August 28th, 2012
It's been a while since my last posting. Time flies, and more so with 3-year-old twin sons and a 7-year-old daughter!
It's hard to believe that it's almost 5 years since Alexia left. So many things have happened since then, but still there isn't a day in which our Princess Warrior is not present in our lives, by a thought, by telling an anecdote or just by looking at her siblings and seeing in them traits of Alexia.
The hardest part is not being able to know what Alexia would be like now. The image of her that remains in my mind and in my heart is still 3 years old. Sometimes I try to project how she would react to things, what she would look like or what her personality be like, but it's just my imagination...
Beyond missing Alexia everyday, the rest of our things are doing well. Sofi is half-way through 2nd grade and enjoying school very much. She is very responsible with school and cares about her grades, but in a healthy way. It's really good to see how happy she goes to school day in and day out. She is a very good "older sister", leaving aside the typical fights! A few days ago, someone who didn't know about Alexia, asked her how it felt being the oldest sister. She looked at me and answered "Well, I'm not the oldest..." and after a couple of seconds, she added "In fact, I wasn't the oldest but I guess that now I am...", with a face of "wow, that sounds like a big responsibility"!!!
Mati and Gonza are on fire! Everything aligned at once to create two little tireless kids: being boys, being 3 yrs old, not paying attention, challenging limits and having to outdo one another on everything (especially if it's messy!). They put Ursula and I to the test every waking hour! However, they are great kids and they behave quite well when they are out of home ;-)
Ursula and I are doing well, enjoying our beautiful family. In May, we had our 10-yr wedding anniversary, so we left the kids with grandparents and spent 2 weeks in France (Paris, Loire valley and Cote d' Azur). It was great!!
In July, the whole family went to Miami for 3 weeks and had a great time. While I worked there, Ursula saw friends and the children went to summer camps and the beach. We had our Disney getaway and it was a lot of fun! Often we missed the hand that Alexia could have lent us to manage Mati and Gonza; Ursula, Sofi and me wasn't enough!!
We treasure every day with the children very much. I guess one of the many things that Alexia taught us with her fight is that nothing is guaranteed in life, not even enjoying your children. Therefore, we strive to make the most of every day!
Thanks so much for checking up on us!
January 14th, 2012
Happy 8th birthday in Heaven, princess Alexia!!!!!
Today, we celebrated your 8th birthday! It was a beautiful day, all sun and hot weather in Buenos Aires' summer.
It's hard to believe that you would be eight years old already... I can only realize how big you would be when I see your siblings, who continue to grow and shine every day!
The celebration was as beautiful as always! Your Mum and Sofi made an amazing cake, with layers in different grades of pink and pink and purple frosting. I was beautiful and very tasty!! We sang happy birthday in 2 languages and your siblings helped blow the candles!
After that we released 8 balloons, half pink and half purple, which flew towards Heaven, towards you! The twins were amazed knowing that you would be getting those balloons so high up!
Also, we went to your grave to leave some flowers, which were picked by Sofi. We had a "conversation" with you: each of us said something to her. It was fun, moving and sweet!
We spend the previous week in Tandil, at a ranch, and we had a great time! We did all the usual stuff there: horseback riding, tractor riding, hiking, BBQs, swimming pool. It was very relaxing and a great opportunity to spend quality time as a family.
Next week we will be going to the beach in Brazil, to spend a week at a friend's beach-front house. It promises to be another exciting week for all of us, as Sofi, Mati and Gonza love the beach!
Thanks for always watching over us, Alexia! We miss you and we love you!!
Mummy, Sofi, Gonza, Mati & Daddy
November 28th, 2011
Today it's been 4 years. Or 48 months. Or 17,520 days.
Not a single day has gone by without thinking about you, dear Alexia.
Not a single day has gone by without missing you, although knowing that you are watching us from Above.
Not a single day has gone by without being so proud of you, without thinking on how many things you taught us and how many souls you touched in your short life.
We would much rather have you here, with us, than any of the above.
However, we are grateful that we have Sofi, Mati and Gonza here with us. Each of them has a trait of you, Alexia, and they help us imagine what you would do and what you would look like today.
4 years in Heaven.
We miss you, Princess Warrior! We love you.
Sofi, Mati, Gonza, Ursula, Ignacio
October 16th, 2011
Today we celebrated Mother's Day in Argentina. Mother's Day is a special celebration, but much more so in our family.
Ursula -your Mom and Sofia's, Gonzalo's and Matias' Mom- is the best Mother! The love and devotion that she has towards all of you every day of her life is unique. She cares about you and is always making sure that you are alright, even if that implies putting herself and her other responsibilities second. She also has the necessary discipline and determination to be a great educator, a great teacher for all of us, a true Mother.
Today, we celebrated by going the five of us out for lunch for the first time ever. We went to "Kansas", an american-type of restaurant not far from where we live. We had a great time. We felt your company all the time: while we were all tossing ("arriba, abajo, al centro y adentro!"), when we all shared vainilla ice-cream with chocolate fudge, when Sofi gave Mom a beautiful card that she had hand-made...
Every Mother's day we remember the last one we celebrated with you. That day when you gave Mummy those beautiful earrings that she still wears. We haven't been able to watch that video yet, but we will do so some day.
A couple of days ago, it was the day that marked the fact that you have been in Heaven for a longer period of time that the one that you spent among us on Earth. It's a sad statistic. However, I feel like we spent much longer together than the time that has elapsed since you passed. I'm grateful that we were able to spend so many days and nights together! That we spent so many afternoons at the swings, or playing at home or while you were inpatient, or driving around!
Your Mummy and I just came back from a short vacation, the two of us alone. We left your siblings with Mamama and Papapa and spent a few days in NYC and Miami. They were good! I'm grateful that I am married to such as fantastic Mother, Ursula!!
Yesterday, when we came back home, on top of enjoying having Sofi, Mati and Gonza with us again, I had a very memorable moment. I was talking to Sofi and suddenly, out of the blue, she told me: "Dad, you know, I wish I were 1 year old again." I asked her why. And Sofi, with her sweet voice and a little smile on her face, told me: "So I could play with Alexia again".
We all miss you very much, Alexia. And, we are grateful that you are always present in our days!
Happy Mother's Day to Ursula, to my Mom (Abuela Ali), to Mamama Vicky, to my sister Marina and to all Mothers around the world, both those that are mothers and those who are trying to be.
Thank you for watching over all of us, Alexia! We love you and we miss you!
July 17th, 2011 Dear Friends,
It's been a long time since our last update. Our family continues to do well.
Sofi, Gonzalo and Matias brighten up our days and it's amazing how fast they are growing!
Sofi started elementary school and she is doing very well, despite being the youngest in her class. She is a responsible student -she gives her best to learn and do well- and also has adapted very well to her new classmates and school. Sofi continues to make progress in her horse-back riding and tennis classes, and she is a great cooking assistant to her Mom, Ursula!
She turned 6 on June 25th, and celebrated with a great party that Ursula organized for her with a Tinker Bell theme. Sofi made sure that she shared her celebration with Alexia, releasing a bunch of balloons that flew up towards her!
Mati and Gonza are adorable! They turned 2 on May 5th, and celebrated with another amazing party that Ursula organized for them (this time with a Cars theme, which the twins love!). They have so much energy and they are so much fun -especially when they do whatever they want, daring one another to drive us more and more crazy!
They are best pals, even when they are so different both physically and in personality. Each one of them has some traits that resemble their sisters: Gonzalo after Sofi and Matias after Alexia. It's funny, because when they see pictures of their sisters at a youger age, they say that Sofi is Gonzalo and Alexia is Matias. However, they are already starting to recognize her older sister, and we pray to her every night.
Ursula and I are enjoying the kids as much as possible. We often say how exciting it would be if Alexia were still with us here, with two girls and two boys... We know that she looks after all of us from Heaven, but it's not the same!
Also, we try to take a mini-break per year, leaving the kids with Grandparents. This year, we went to Italy for a week, while mamama Vicky and papapa Pepe stayed at our home. We visited Venezia, Verona, Positano and Capri and we had an amazing time.
In February I turned 40 years old and, once more, Ursula organized an amazing party for me! We had about 130 friends coming over to our house, who ate, drank and danced until 4am. We all had an amazing time, and I enjoyed the celebration very much! Alexia was present there in many ways, specially when she made sure that the rain that had fallen throughout the day, stopped just before the party started, giving room to a beautiful, stary night!
We miss Alexia every day and we try to keep what she taught us on the top of our minds. Unfortunately, we didn't get to enjoy her company for very long, but Alexia definitively had a huge impact on all of us.
We want to thank all our friends for their continuous support! You are also one of the great legacies that Alexia left for us!
With love and gratitude,
January 20th, 2011
Happy Birthday in Heaven, Princess Alexia!!
Last Friday, January 14th, we celebrated what would have been your 7th birthday!
We were in Tandil, at Ali and Coco's ranch (that's why we couldn't update until today). Mummy and Sofi had made a beautiful and yummy pink carrot cake, and Sofi, Mati and Gonza blew your candles with the help of your cousin Martina. Many of your aunts and uncles were there as well.
We released pink and purple balloons and Sofi had made a beautiful collage that she attached to the balloons so you could get it. However, you had your own intentions that we kept those balloons and that drawing: a strong wind caught the balloons as they were going up in the air, and they got entangled at the top of a huge linden tree. Overnight, the balloons lost their helium and softly came back down so we could catch them again.
As we still wanted you to have balloons and another collage from Sofia, the next day we released another set of 7 balloons that quickly rose in the beautiful summer sky and after several minutes they drifted away in the horizon. We are all happy to know that you got your balloons and drawing and you are happy that we kept the first set!!
We had a great time in Tandil. Sofi rode her bicycle without training wheels and galloped on a horse all by herself; the twins and Sofi caught their first fish in the creek that runs through the property; they went to see people work with cattle; Sofi rappelled down from a tree using a rope that uncle Fredy had set up... Mati and Gonza loved horseback riding with Dad, to the point that they would refuse to get off the horse! They also were thrilled with cows, horses and cars! On the way to Tandil, they kept on screaming every time they saw a car or a truck!
We love to see your siblings grow and enjoy life the way you taught us to do it. However, it is always hard to try to imagine what you would be doing and saying, what you would look like, what kind of jokes you would be playing to make us laugh... We miss you very much, dear Alexia!
This year, we were lucky enough to have the whole Vidaguren-Castaneda family together for Christmas at home. Santa Claus visited us and brought many gifts, to the joy of children and adults! Still, the Holidays is when we miss your presence even more...
Our friend Agustina -the little girl that we've been supporting while she fights cancer, continues with her treatment and is doing well. With the help of other friends of ours, we have raised money to help her family build a room for her, which is half way done. Also, Sofi has a deep admiration and love for Agustina: she loves to go visit her, go out to McDonalds or the movies with her, inviting Agus to play with her! With Ursula we wonder what kind of connection there may be between the three of you... but for sure there's a strong one!
We are thankful to all our friends and family for their continued support and company through this journey. We love your guest-book entries and messages and we thank you for them!
We wish every one of you and your families a great 2011!
On the one hand, it doesn't feel like it's already 3 years. Alexia's memories are still fresh in our minds and her pictures and videos are everywhere in our house and lives.
On the other hand, when we see how big Sofia is, or how much Mati and Gonzi have grown, we wonder what Alexia would be like if she were still here with us. And we continue to miss her like crazy.
We are grateful to have three beautiful children who are helping us look forward, and try to live our lives in the way that Alexia taught us: facing challenges with strength, determination and joy, and making the best out of each minute. Also, each of them has something that bears some resemblance to Alexia, be it in their physical traces or their personalities.
Sofi is a lady. She is finishing Kindergarten in 2 weeks and getting ready to start Elementary School in Feabruary. She often remembers Alexia, to the point that yesterday she showed up in our room at 7am asking for a picture of Alexia and her, to make a frame!
Mati has the smile and joyful personality of Alexia. This kid is always happy, and his smile is the size of half his face! He is so sweet!
Gonzi is the one who looks closest to Alexia. He is very sweet and at the same time very determined. No obstacle is going to get in his way! (this also applies to paying attention to his parents' commands!)
Today we had a nice very intimate memorial celebration with family, at home, after we offered a Mass for Alexia. Papapa Pepe, Mamama Vicky, Mari, Freddy, Martina and Javi were physically here, in representation of the rest of the family and friends who we now continue to think about Alexia and us.
Thank you so much for continuing to be with us!!!
Ursula, Sofia, Matias, Gonzalo, ^Alexia^ and Ignacio
July 19, 2010
It's been a while since our last update. Our family continues to do well, knowing that ^Alexia^ is looking over us from Heaven.
In a few days it will be 32 months since Alexia left... Even though it may feel like a long time, it's amazing how little things bring vivid memories of Alexia back to life, as if time hadn't passed.
The twins Matias and Gonzalo are in process of starting to walk. It's so much fun to watch them try their first steps! They are 14 months, about the same age Alexia had when she started to walk. In her case, she was already fighting cancer and had spent several weeks inpatient, but her spirt and joy for life was as strong as the twins! She made sure that she enjoyed every minute as much as posible, and spread that happiness to all of us around her.
Each of Mati and Gonza share some physical and personality traits of Alexia. So, often times we half-close our eyes and feel like she is back with us... It's interesting because the twins have a special attraction for pictures of Alexia... I wonder what they feel when they see her older sister, to react in such a way...
Sofi is also doing well. She is growing so fast! She is very good at writing, and she enjoys everything that is related to painting, dancing, singing or drawing. And horseback riding! She loves her riding lessons!
Some time ago we learnt of a 9 yr old girl called Agustina. She lives near our house and is fighting cancer (Ewing's sarcoma). Her Mom and Dad have another 9 children and they all live in small, 2 bedroom house. They are beautiful people, who are doing their best to support Agustina with very little material means. This has given us a real chance to start to give back some of all the love, support and help that we received when Alexia was sick. Please, pray for Agustina so that she will be able to beat the cancer beast!
Besides the good feelings and recharged batteries that we get after visiting Agustina, seeing her often brings back strong memories of Alexia. One thing that has really striken us is to realize how strong Alexia was with the whole treatment... Agustina tells us how much she hates and suffers going for check ups, getting stung by needles, having her port accessed, getting chemo, staying inpatient... Alexia couldn't put it in words, but we are sure she was feeling the same. Hardly ever did she complain; on the contrary Alexia acted as if she had to keep our spirits high, being so resilent and acting as happy a baby as posible...
We miss you Alexia! Thanks for giving us these opportunities to re-live the days we spent together!!!
Ursula, Sofi, Mati, Gonzi & Ignacio
March 28, 2010
Today is 28 months since Alexia went to Heaven.
Every day we remember and miss her. It can be something that Alexia could have said or done in a certain circumstance, or it is a nice full moon, or it is a bright star in the night sky, or it is just a memory.
It is really hard to try to project what would Alexia be like today, what she would do, what she would say, how she would interact with her siblings and with us. Our image of her only goes until she was a little less than 4 years old. For an "older" Alexia, we can only watch Sofi or other kids and try to put Alexia's face to them... Definitively, not the same...
Fortunately, we are doing well. Matias, Gonzalo and Sofia are growing and growing, they are healthy and they are happy. The twins are a blast! They have started crawling and we have to keep a close eye on them because they can cross the entire house in a matter of seconds. Sofi has started Kindergarten and she is in the typical "why" phase: she wants to know everything and absorbs knowledge like a sponge. She has matured so much! Every so often, Sofi would ask or say something about Alexia that leaves us speechless due to the depth of her point... Here are a couple of pictures of them:
Ursula and I recently took one week off, left the children with their Grandparents, and went to Patagonia. We had a great time! The setting was spectacular and we enjoyed this vacation a lot!
Thank you so much for continuing to think about our family!
Ursula & Ignacio
January 18, 2010
Thank you so much for all the messages for the Holidays and for Alexia's 6th birthday!!
We just came back from Ignacio's family's ranch in Tandil, where we spent 6 beautiful days and celebrated Alexia's 6th birthday. Ursula and Sofi had made a pink cake, had arranged pink baloons and had set 6 pink candles! We could just picture Alexia enjoying all that display of pink and blowing the candles many times over, surrounded by her three siblings, Ursula and I and the rest of the family.
Both the Holidays and Alexia's birthday are tough dates. Even when this year we are blessed to have Matias and Gonzalo with us -and they are adorable- there's that empty space that is Alexia's. When Ursula and I look at our children, we are very happy and proud of them, but we always silently try to imagine what it would look like if Alexia were still with us in this life...
Sofi, Mati and Gonza are growing so fast! Sofi surprises us every day with her conversations, her questions, her imagination, being a lovely and caring big sister to her brothers.
The twins have just realized of each other's existence, so when they make eye contact, they laugh out loud and start their baby talk. It so great to see them interacting: it's the first step of a lifetime of friendship, adventures and God knows what else! Often, they remind us of how Alexia and Sofi interacted and enjoyed those few years together...
Thanks so much again for your company along these years! We are still surprised by how deep Alexia has touched so many people and how she continues to teach us lessons...
Here's a picture of our family, including Gipsie (our yellow lab):
Exactly 2 years ago you left this world, become an Angel and entered Heaven.
We have tried to continue with our lives without you in the best possible way, but it is still hard. When special dates like today come, we are reminded how much we miss you and how much we would like to have you here with us.
We know that you share every giggle of Mati and Gonzi with us, that you play around with Sofi, that you watch over all of us from Above, every day. But it still is not the same as having you physically here.
We often wonder what you would look like, at almost 6 years old... We try to guess how you would act in certain circumstances or how you would interact with Sofi, the twins or us...
One thing is for sure: you would be running around with a smile in your face, living your life to the fullest and trying to make everyone around you laugh. As you did throughout your short life.
You must be proud because your three siblings seem to be following your lead! Your Mummy and I strive to do the same, although not always as successfully...
Alexia, our Princess Warrior, we love you, we miss you, we admire you. What eventually conforts us is knowing that right now you are healed. No hospital stays, no meds, no suffering. You running around freely. Just the way it should have always been...
Thank your for those almost 4 years together!! And thanks for still sharing every day of our lives!!
Loving and missing you,
Matias, Gonzalo, Sofia, Ursula & Ignacio
October 18, 2009
Today in Argentina it is Mother's Day... probably one of the hardest holidays to celebrate without my Princess Warrior.
Here is a picture that did bring a smile to my face. Alexia, you really would be so proud!
Missing you more than ever... Your Mommy
September 29, 2009
Yesterday it was 22 months since you went to Heaven.
Even when time numbs the pain that we feel for not having you here with us, your presence around us is permanent. Sofi talks about you all the time, little by little understanding better what it means not having you here. Today she was telling me: "Daddy, I want to give Alexia this necklace but I can't... I'm not a fairy or a bird to fly up to where she is..." Your twin brothers are lovely, and each of them reminds me so much of you! Matias has the same big smile that you had, and he laughs all the time! Gonzalo has the same big eyes that you had, and they are as expressive as yours! They are starting to watch the same Baby Einstein DVDs that we watched together so many times... I just close my eyes and I can feel you in my arms once again.
We miss you very much little princess! Thank you for looking after your siblings, your Mom and I from Above!
With love, Dad
August 17, 2009
Not a day goes by that we don't talk about you, miss you, and wish you were still with us. Your grandfather Pepe asked me to post this picture. We love you, Princess. Big kisses, Mommy
June 9, 2009
This picture is for you, Alexia. You must be so proud!
We miss you more than ever...
May 28, 2009
Eighteen months ago Heaven welcomed a very special little Angel and we said goodbye to our sweet Alexia.
We miss Alexia dearly and many things, every day, remind us of her.
Last Saturday we celebrated Martina's (our niece) 2nd birthday and we couldn't help but thinking of Alexia's 2nd birthday. Alexia had just miracously survived sepsis, emergency surgery, respiratory distress and a month on a respirator. It was just two weeks since she had been released from Hospital and a few days since she had just managed to walk again after being in a coma for 4 weeks. But no one could have guessed that all these had just happened to Alexia when you saw her jumping with joy while she opened the door to Barney, while she asked for the tenth time to have her two candles lit so she could blow them again... Click HERE to watch ALEXIA'S 2ND BIRTHDAY VIDEO
Our admiration for our daughter's strength, resilence and joy of life grows with every day that we gain perspective on what she went through and on how bravely she fought it.
We love you so much, Alexia, our Princess warrior!
Sofi, Mati, Gonchi, Mummy and Daddy
May 5, 2009
Matias and Gonzalo Vidaguren Castaneda were born!!
Today at 5pm, Ursula gave birth to our twin boys Matias and Gonzalo!!!
Matias weighed 2.7kg and Gonzalo 2.4kg and they are both doing well. They were a couple of week premature, so they are spending sometime in NICU, but everything is under control.
Ursula is also doing well, despite feeling sore from the C-section. We are all very proud of her!
The birth of our boys was definitively a very emotional event. On the one hand, the joy of witnessing (by duplicate) the begining of life. That cry of life that babies give when they come out of the womb is one of the greatest things in life. I can still remember when Alexia did that over 5 years ago...
On the other hand, the realization that children's life is a gift that us parents must cherish every day, because it is something finite. This was the first time I was able to grasp the true meaning of this.
We know that Alexia shares our joy from Above and that she is watching over her brothers, her sister Sofi and over us. However, how much do we miss having her here with us!!
In love, peace and gratitude,
^Alexia^, Sofia, Matias, Gonzalo, Ursula and Ignacio
April 12, 2009
Happy Easter to all of you!
Today we went to Easter Mass to Hospital Austral's chapel (the Hospital where we treated Alexia). As we were exiting, it was dark and Sofia started looking at the stars. She said "Look! That is Alexia's star!", and then she screamed "Hola Alexia!". She continued her dialogue with her sister, at the top of her lungs: "I miss you! Why did you have to die?... I love you, Alexia!!". She repeated that a couple of times. Witnessing that was breaking my heart, but Sofi didn't look sad, she was kind of "factual".
We then drove home and, as we got out of the car there, I told her that we could see the stars from there as well. Sofi looked up and then at me, and said: "Daddy, I can't scream loud enough for Alexia to hear me here. It is too far away. She is closer by in the Hospital grounds". Sometimes I wish I could have the same simple and candid way to experience things as kids do...
Ursula is doing well. She is starting week #33 and the twins seem to be very comfortable in her huge belly. She is not as comfortable as you can all imagine, but she is doing a great job!
We moved a few weeks ago. With the sudden increase in family size, we needed some more room. We got some help from Alexia and were able to find a nice house only 5 blocks away from our previous home, in the same community where we live. All the basics are in place, so we can now wait for the arrival of the twins, which should happen in the next 4-6 weeks (hoping that they don't get too anxious!).
Thank you for always being there for us!
Sofia, Ursula & Ignacio
February 28, 2009
Another month goes by since Alexia went to Heaven. It's been already 15.
Ursula's pregnancy is going well; her belly is huge even when she should go for another 12 weeks. The twins definitively take some room! She feels the weight and size of it, but is handling it very well. Sofi is looking forward to her brothers and is a great help. It's amazing how fast she is growing and maturing!
The summer vacation in Panama was great! We all enjoyed the beach very much, and specially Sofi. We also went to Tandil and spent a few days in our family's farm.
A few days ago it was my birthday. We threw a little party with friends, the first one in 5 years. It was good, but I couldn't stop thinking about my last birthday with Alexia. It was the day we arrived in Duke the second time around. Alexia had just relapsed for the 3rd time, wasn't going into remission and was feeling quite bad. However, when time came of lighting my candles, Alexia gathered the little energy she had left, smiled and together with Sofi and Ursula, helped me blow them.
I still wish every day that Alexia were here with us, physically. We feel her presence and her protection, though. This past birthday, when Sofi and Ursula helped me blow the candles, I knew that Alexia was right there, over my shoulder, smiling and helping me once more.
Thanks for always checking on us and leaving your messages!
January 14, 2009
HAPPY BIRTHDAY IN HEAVEN, MY SWEET ANGEL WARRIOR!!!
Today you would be 5 years old... what a milestone! It is so bittersweet to try to celebrate your life and not have you here with us at the same time. But we try to do our best. Sofi and I baked you a special cake, with pink sprinkles on top! Your cousin Martina came with Marina & Freddy to help us blow out the candles! Oh, how you loved to help me in the kitchen... even though you never liked the eating part;) I remember how you helped me sprinkle all the cupcakes we baked for Sofi's 2nd birthday party a year and a half ago. You had so much fun!!! Your little sis is also a great helper. She LOVES to watch and help. She is going to be a great cook!
In the afternoon, we went to the movies to watch "Raton Perez", which Sofi has been wanting to see for a long time:) Sitting in the movie theatre it dawned upon me that the only time we were able to take you to a movie was to watch "Ratatouille" way back in Durham. And here we were on your birthday watching a mouse/rat movie again;)
I want to thank all our friends and family for the messages and phone calls remembering our Princess Warrior, as we make it through yet another milestone without her. It means so much to have you think about her as we continue to keep her memory alive while missing her deeply with our hearts and souls.
On a different personal note, and since many of you have asked, my belly is getting huge. The twin boys are growing fast inside and are doing great! I am now 20 weeks pregnant.
Sofi and I are leaving for Panama tomorrow morning to spend a few weeks at the beach visiting my parents. Ignacio will join us next week;) I can't wait to see the ocean.
With love, U.
December 24, 2008
Merry Christmas and Happy New Year to all our friends and relatives!!!
Even when is still tough to celebrate Christmas without Alexia, she has made sure that we have as good a celebration as it can be.
We will be having both our families over for dinner tonite. We have been blessed by Ursula's pregnancy with two boys. Sofi is doing very well, growing and enjoying life to the fullest (as her sister taught her to do), remembering Alexia in a very positive way.
Ursula and I are happy to see that things are evolving this way. We still miss Alexia very much and this will always be the case. But we see the light in our lives shining stronger and stronger every day. Sofi, ^Alexia^ and the twins are the main reasons behind this. Also, our families and many friends like you -who have been supporting us for so long, help us go on.
Thank you so much for everything! We always pray for all of you, and having Alexia as our ambassador in Heaven, we know that God is listening!
Love and peace,
^Alexia^, Sofia, Ursula, the twins & Ignacio
December 8, 2008
First, and foremost, THANK YOU to our friends and family who continue to stand by our side and have written, called, and emailed during these last couple of days (and past year) as we continue to miss our sweet Princess Warrior, Alexia. One year ago, Alexia became an angel and our life was forever changed. And exactly one year ago today, we buried Alexia’s ashes in Argentina with friends and family from all over the world who joined us.
This past year has been the most difficult so far. They say time heals all wounds, well, I don't believe it heals THIS kind of wound. We are learning to live without her physical presence, and not a day goes by without remembering her sweet smile, amazing laugh, and those eyes. For me, it has been unbelievably emotional to be blessed with a pregnancy (new life inside of me) and at the same time living the loss of another one, forever wondering why innocent children must suffer and die.
The more time goes by, the harder it gets in many ways. The longer it’s been since I was last able to hug her and snuggle togeter (like we did ALOT), the longer it’s been since the last kiss, the longer it’s been since hearing her last laugh. The list goes on forever. Her legacy continues as each day we remember her strength and the furor with which she fought.
On November 28th, Father Tomas held a mass in Alexia’s honor. He spoke beautifully about our Princess Warrior, and at the end Ignacio shared a letter he had written to Alexia. It was impossible to not cry for me during the entire event. I will translate the letter and share it with those who were not able to join us.
Thank you once again! Love, U.
(Following is the letter written by Ignacio):
Dear Alexia, One year ago you became an angel and went to Heaven. To say that we miss you a lot does not really say how much we really feel your physical absence. Not a day goes by without thinking of you. The moments are endless in which your mommy & I think about what you would have said, what you would have done, how you would have laughed… we can only imagine those moments.
The few times in which I have gathered the strength to watch videos of you, your absence is felt too strongly. To remember your voice, your laugh, your happiness to be alive… Little by little we will try to do it with more joy than pain, but we still got ways to go.
In spite of missing you physically, we always feel your spiritual presence. Your little sister, Sofi, makes sure to include you in her play games, in her family drawings, and in reminding us of things the 4 of us did together. Your room, your toys, your pictures are everywhere. Personally, I feel our family is protected by you! It is really a privilege for us to have our own little Angel in Heaven, who looks after each one of us, and stands before God and the Virgen Mary in our names. In fact, I pray more to you than to them…
And what about the Twins!!! I am sure you had something to do with that, and you must be laughing from above watching us enjoy the news, while at the same time being a little anxious of having to take care of 2 babies at the same time! But what gives us comfort is knowing we have your spiritual support and having Sofi who will also help us with the chores.
Alexia, time will give more perspective to what you taught us during your brief but intense passage thru this life; To take advantage of each moment, to live life with happiness and intensity, to always look at the bright side of things, even when surrounded by a sea of problems… It also shows us each time how many good people there are in this world. Many thanks to the family and friends who have helped and supported us, who still offer their help and support today. Many more who continue to think about us from many far away places in the world.
To continue in Alexia’s spirit, we would like to share with you that we have created “Alexia, the Princess Warrior Foundation”, with the goal of helping and supporting children and their families battling against leukemia and other cancers. We will soon give more details, and ask for your generous support to complete our mission.
My dear Alexia, one year since you left, thank you for helping us move forward. We know that without your help with Above, this year would have been even far more difficult. We love you very much and we know that we will see you again some day!
Alexia, The Princess Warrior Foundation
We have set up the foundation in the US, with the purpose of continuing Alexia's spirit and memory with concrete actions.
The foundation will support a broad array of initiatives aiming at supporting children fighting against cancer and their families. This includes: improving the medical equipment and living conditions of Hospitals (mainly in Latin America), supporting training of doctors and nurses, supporting certain research efforts and helping the needs of families of children with cancer.
Our fist goal is to donate materials, toys, games and appliances to Hospital Austral -where Alexia was treated in Argentina- so that the many kids that are treated and transplanted there (and their families) can enjoy better hospital stays.
We will be setting up a website with more information, but in case you want to make a tax-deductible contribution, this is the Foundation's bank account: Bank of America Alexia, The Princess Warrior Foundation account #8980 1393 0382 ABA 063000047 Miami, Fl
We thank you in advance for your generosity, and please, email us with questions and suggestions on how to get this effort off the ground!
Love, Ursula & Ignacio
November 18, 2008
On November 28th it will be 1 year since Alexia entered Heaven.
We will celebrate her life with a Mass at Martindale Country Club Chapel, on Friday November 28th at 7:30pm.
We invite our friends and family to join us, either being there or saying a prayer on Alexia's memory. We will serve some empanadas at our home, afterwards.
Updating on the pregnancy, the twins are growing as expected. Ursula is still suffering from strong morning sickness, although she's had a few better days.
Sofi had her Kindergarden concert last Friday and she did a terrific job, dancing and singing (in English) in front of a huge crowd! She definitively enjoys performing. We are very proud of her! Abuelos Ali and Coco were there as well.
Thank you so much for all your messages and for sharing our happiness!!
^Alexia^, Sofia, Ursula & Ignacio
October 28, 2008
Today it's 11 months since Alexia left.
This time around, we have very special news to share: Ursula is pregnant!! And we think that Alexia has been particularly involved in this, since Ursula is expecting twins!!!!!!!!!!!!!
We are very excited with the news (not to mention some "anxiety" given that it is two babies at once!). Ursula is having quite severe morning sickness; she says that it is twice as strong as in her previous pregnancies! We all hope that she feels better soon. Sofi is aware that Mummy carries a baby in her belly, and she knows it's two. She says that she will look after them, not without a hint of hesitation!
We miss Alexia very much. We know that she is sharing our happiness in Heaven, but it is hard not to think what things would be like if she were still here with us.
Thank you very much for all your support, prayers and love! You have been with us through rough times and we are happy that we can now share great news with you.
^Alexia^, Sofia, Ursula & Ignacio
September 30, 2008
This new "monthlyverssary" of Alexia's departure has been particularly special. We are writing this posting from Durham, North Carolina.
Ursula and I spent a few vacation days in NYC and it was great. We spent great quality time together while Sofi stayed in Argentina with abuelos Ali and Coco (thank you so much!). We saw some friends and enjoyed the City, its energy and its restaurants.
We also decided to come to Durham to pay a brief visit to our friends Valeria and Gonzalo, whom we hadn't seen after their daughter Sofia passed away. Coming to Durham has been tough. Ursula was here in June, but it is my first time since we left in December. It fells really ackward to be driving around the area without Alexia. Memories are everywhere, and Durham equals Alexia.
Durham also reminds us of all the good things that Alexia left for us. We are meeting with many friends from Duke Hospital: Dr K, Andre, Sue and several of our favorite nurses. We are sharing stories about our girls with Valeria and Gonzalo. We are re-living some of the happy moments that we had with Alexia and Sofi here. We are reminded of all the love that Alexia was able to gather from many people around the world.
We miss Alexia a lot, and in Durham we miss her even more. But here is where we can see Alexia's legacy in the most clear way, and this makes us proud. It is still a sad pride, but we know that Ale is helping us from above so one day, we are able to turn it into a truly happy pride.
Thank you very much for your support, love, postings and prayers!
Ursula & Ignacio
August 28, 2008
Another month goes by without Alexia. It's been 9 months already...
We miss her everyday and often wonder what she would do or say in a certain circumstance if she were still around. Alexia continues to be present in our lives; Sofi makes sure that her sister is always in her plays and her imagination.
Ursula and I took a week off and went to Las Lenas -a ski resort in Argentina. We had a great time together spending our first "alone" vacation since Alexia was born.Sofi stayed at home with Abuelos Coco and Ali and she had a great time with them as well.
Slowly, the three of us are trying to rebuild our lives without Alexia. I have always admired Alexia's cheerful personality: she was always smiling and living her life to the fullest, even when things were really tough on her. We know that she wants that we also smile and live our lives to the fullest, and that, from Heaven, she is helping us achieve this.
August 18, 2008
I know I haven't updated in a long while... but I wanted to ask you to please pray for our friends Valeria & Gonzalo Castro. Their little daughter, Sofia, earned her angel wings last nite. She fought a brave war against leukemia for a long time.
We became close to this amazing family during Alexia's first transplant, as neighbors and very special friends through the two years we were at Duke. Sofia relapsed last year and was able to keep her blasts "under control" for about a year. A miracle, to say the least. She reminded me soooo much of Alexia. It breaks my heart for Valeria & Gonzalo as they now feel the same pain we live with everyday. I know the are strong, and they will be okay, but it still breaks my heart.
I'm so glad I was able to visit them in May with my Sofia during our brief trip to Durham. Seeing Valeria, Gonzalo, and especially Sofia Castro was our main purpose of going there. I know some people might have thought it was strange for me to want to go back to Durham after Alexia, but the reality is that I felt close to Alexia while there. It hurt, but sometimes you want to feel the pain to keep the memory alive.
Thank you for listening.
August 5th, 2008
About one year ago, the four of us started the best two and a half months ever. Ironically, Alexia had just had her 3rd and last relapse.
We had lifted up all restrictions, and for once, Alexia, Sofi, Ursula and I were able to enjoy life in the way that families typically do. We went to the movies, we went out for lunch and dinner, we rode horses, we had fun at the carousel, we played with our little cousin Martina, we went inside a shopping mall, we played with other kids and families...
It's good that we were able to build those memories. It's really hard that they are all we have left. No matter what comes in the future, those moments of the four of us together will only happen again in our imagination.
Sofi speaks daily of Alexia. In the last month or so, she has started playing with "Alexia de mentira" (imaginary Alexia), and she pretends that she walks holding hands with Alexia, she pretends that she hugs her, and she wants us to also pretend that Alexia is here with us. Every now and then, Sofi reminds us that "the real Alexia" is in fact in Heaven, and she says so with smile in her face. I guess Sofi knows that Alexia is living a happy life in Heaven and she enjoys that.
I also know that Alexia is living a happy life in Heaven, but I can only wish I could also enjoy that. I still miss her too much...
Thanks to everyone for checking on us and for leaving your messages!
June 30th, 2008
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,
June 8th, 2008
Happy Birthday, Ursula!!
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!
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