FOR DONATIONS!!            
OUR WAY TO GIVE BACK!!!!

Taking care of us is  TEAM CONTINUUM , a foundation that  helps many families during their stay in NYC in many ways. That is why Valeria's father, GERARDO REYES , ran NYC Marathon with Team Continuum Runners and Fund raised for the foundation . This year Valeria is honored by her father and a cousin that are running the NYC Marathon on Nov. 2, 2008 and raising fund for TEAM CONTINUUM.  Also Gerardo will ran NYC Half Marathon on July 27 '08.  If you want to donate click DONATE .    THANKS TO ALL OF YOU THAT DONATE ON 2006 and 2007!!

JOURNAL

2008-12-25 Merry Christmas! Finally I write! A lot of things occurred since the last up-date. I'll summarize it, but if you can read Spanish you may go to the Journal section at www.caringbride.org/visit/valeria and read all the details since September 2008...

During September after our visit to PR everything went good.. school, hospital and even work. But on October 3rd Valeria's doctors gave us the last MRI results... " they saw a new spot  in the brain"  They were not sure if was another tumor or a lesion or scar from the radiation.  So they did on Oct 9 a Lumbar Punctual Procedure - get liquid from the Spine- and Thanks God came negative to cancer cells. (Click her for pictures) Then on October 16, Valeria had a biopsy at NYU hospital (click her for more pictures). It was confirmed...it is a new tumor on the cerebellum area.  We were in shock! She looked so good! We will never tell.. but it was there and we had to face it! On November 10 after many appointments and dr discussions we decided to start a new trial medicine.  Valeria was in an experimental medication for 37 months, August 2005 to September 2008. And the tumor shrunk in size in the first six months but it was stable since January 2006! During the period of Sept 29 '08 to November 6 she was in NO MEDICATION and and MRI showed that the tumor stayed stable..Wonderful NEWS! but the new tumor grew a little.  So we started the new treatment and she is feeling great...no vomit, no nausea, good appetite, good activity levels, etc... Also she continued twice a week with the occupational and physical therapy for her leg and arm weakness.  After completing 6 weeks on this new medication we had the routine MRI and......GREAT NEWS! The original tumor reduced 10% and the new one kept stable!!!! That was one week before Christmas...so JESUS gave us the best Christmas gift!! Now she needs to continue the experimental treatment and have an MRI each 6 weeks!

Meanwhile a lot of beautiful things and beautiful people had being around us:

1. Montclaire Kimberly Academy - Girls Volleyball Team adopted Valeria with the sponsoring of the "Friends of Jaclyn Foundation" - I invite you to know nore about this foundation that is only about love, friendship and share... http://www.friendsofjaclyn.org  Click here for see pictures of different occasions: 1. when they met Valeria and gave Valeria the jersey from the MKA TEAM...was a very special moment   2. Nov 7 Valeria went to a game 3. Nov 24 - The Team visited Valeria at the hospital 4. Dec 20 - MKA shares gifts and Christmas dinner with us!!  God bless this girls for all the love they are giving to Valeria...is like having 24 more big sisters.  Special thanks to Coach Tully and Coach Donna... what a wonderful people with HUGE HEARTS!!!

2008-09-01 Summer Summary!! Finally I went to my house in PR for 6 weeks! Oh God...what a good feeling! I went to Pr with the three boys and Valeria stayed in NY for her treatment but visited PR in her off days and met with us! During my first days at the house I felt like an stranger because I had to ask my husband where the things were...remember I was not at my house since May 2007(only 5 days) and before that in this last 3 1/2 years I went only for 19 days; some on 2005, others '06 and others days '07.  So I was a visitor at my house!!! But it didn't take too long to get used. During my stay was my high-school reunion (I had a LOT OF FUN...it was so nice to see all my old friends again) the boys played all the time with their cousins and went to the pool or the beach almost everyday.

I need to THANKS some people that made this dream come true!!  My mother, Isolina, my aunt and her husband, Titi Miriam y Tio Cuso, my sister in law, Cary (Rosa) Reyes and specially my husband, Gerardo...who never has a no for my requests!!!  All of them took care of Valeria in New York during her chemotherapy and other appointments.  There are real ANGELS on EARTH!!

When Valeria had no treatment (only 4 week days days each three weeks) she went to PR and met with us and visited some tourist places in the island... we confirmed: PUERTO RICO is BEATIFUL and UNIQUE!!!.  During one of her visits we celebrated her 11th Birthday...click here to see pictures. I'm sorry I could not invite all of you...but hope you understand!! Only with my family was crowd..you know my family is HUGE!  Gerardo and me had an unexplained HAPPINESS to see Valeria sharing with friends and family on her 11 birthday out of hospitals, doctors, appointments, etc...!!!!! God permits to see her many, many more....

In the first week of August we returned to our "reality"..but I have to be honest " this time I didn't feel too sad to go back to NY" Maybe I'm getting used to it, we are having friends, the kids are doing sports and at the end and most important: in the HOSPITAL are taking care of Valeria as a QUEEN and we are living a MIRACLE!!  HOW I'm GOING TO COMPLAINT!!! God bless all of you always!! NAYDA

PS. Please "HELP US TO GIVE BACK" remember to visit: http://www.teamcontinuum.net/athlete_page.asp?eid=22&uid=81712 for donations.

2008-08-23 We continue firm! Thanks to God the result of the MRI of 8-19 came "stable" once again. Don't get confuse, I said once again with joy in my heart… we recognize how unexpected  are these results for some… but GOD continues in control… we do not only depend on science, although personally I believe that the doctors are blessed when having a special capacity to study so much and to try to understand the human complicated body! We pray not only for the patients, we especially pray for the doctors so that God helps them to recognize how them can be used as celestial instruments! Thanks to all for your prayers. God bless… NAYDA

PS. Please "HELP US TO GIVE BACK" remember to visit: http://www.teamcontinuum.net/athlete_page.asp?eid=22&uid=81712 for donations.

2008-05-15 Thanks for your patience! We were VERY busy in these last month...it is not an excuse to keep you posted , but is the true!! First..thanks once again for all those inspirational and lovely messages...

Valeria is feeling good!! Last MRI was on May 6 and again came stable..it is desperate in some point, but when you know about all the other cases around you and you read more and more about her kind of tumor,, then you say "THANKS GOD FOR THIS MIRACLE".  About two weeks I met with one of her Neuro-oncologist and I felt honored with his words "I never thought we will have this conversation almost three years after we met"  Those words gave me more hope than ever, I felt in my heart another way of confirmation that is GOD who is having the CONTROL.  She still out of any second effects like vomiting, nauseas, transfusions, etc...she is a "STRONG" girl!!!!

Her physical therapist with the neurologist recommend transfer her to a specialized rehabilitation hospital to treat her weakness on the right side of her body.  HEr leg is much better (still bumps, but less) but she still does not use her arm.  But about her chemotherapy and antibody treatment that will continue in the same hospital, Memorial Sloan kettering Cancer Center.

Her brothers are doing good in school and GREAT in sports. Gerardo, the oldest, is in a baseball travel team and all of us enjoy going to different places on Sundays to see him play. Is not because is my son, but he plays good!!!! But most important he plays it with passion...  When you have passion on what you are doing you do it better and effortless, because the strength born from your heart!! 

Maximo (6yrs) is doing really great at school and is in a baseball team also. He plays Saturdays mornings and Gerardo two games on Sundays!!  

As you can see, now we don't have free days..Monday to Friday school and hospital FULL DAY and the Baseball and church on week-ends!! 

Last April 21st I had an ambulatory  surgery in my right knee (meniscus & fluids). I feel really good now but need to take physical therapy.  During summer finally I will have the opportunity to be at my house in Puerto Rico for more than just a week!!!!  I will travel with the boys only after school ends and Valeria will stay in NY with my mother, Carol (Valeria's cousin), and Titi Miriam and her husband, Cuso.  I know that Valeria will have very good company.  Then Valeria will go to PR but for just 5 days (treatment off-days) to meet with us.

In the last three years I had being in my house of PR only for 19 days in total.  Last visit was May 2007 for just 5 days...   I miss it a LOT, but I'm not anxious to go back because I know that GOD is having a purpose on keeping us in New York... my heart is missing my house, my people and my island, but my mind is not pushing, is just waiting in CALM with the PEACE that only GOD can give!!!!!

God bless you all with the same PEACE I'm feeling right now......let HIM take the control and you will see your "problems" like nothing....

NAYDA

2008-03-17 God continued in control! Since the last time I wrote Valeria had 3 MRI and Thank God the tumor continued stable! As I have written many times ... on the type of tumor that  Valeria has being stable is  EXCELLENT and OUT OF THE COMMON ... so that we continue to see a miracle every day. She was in-patient in December due to a bacteria. During her hospitalization they operate again to remove the "med-port" that proved to be infected and get a temporary line. Later on January 25, 2008 they remove again the temporary and put a permanent. So far, the latter has been working very well.

Valeria remains blessed regarding  to the side effects of her treatment ... it is good to see her lab results ... sometimes I think she does not have the tumor! REALLY!!??!!  I am not crazy, but I rest on my trust to  God and I feel that my daughter is healthy and we are only waiting for HIS orders to go back to Puerto Rico ... all together (the 6 of us plus the chihuahua, Campanita). 

So, for know we need to stay in NY and we can not go to Puerto Rico.  One curious and important fact of her treatment is that she is the only survival patient. That is sad from the point of view of the others kids, but gives us the BELIEVE that she still out of statistics.  When we asked one doctor what thinks about the results till now, the doctor literally said: “Valeria is a Blessing, we just decided to keep her in the treatment”.  When I heard those words…my heart jumped of happiness….when someone get to the point to admit that unexpected results are caused by a blessing….a miracle is happening, is an unnatural force controlling the situation…and there is only one word for it: GOD!!!  IN THAT CASE OUR GLASS IS NO MIDDLE FULL….IT IS TOTALLY FULL!!!!

Now we are looking to move to another apartment in the same area, near the hospital and the schools.  We are in a really small apartment now because we thought it will be for a year only, but based on the actual situation we need to move. The boys started school last week and Valeria started Home School, now she is in 5^th grade!!!! I just hope that winter does not get to cold this year..JA, JA…

 Nayda & fam.

2007-08-27  THE COUNT DOWN IS OVER...
Tomorrow, August 28 at 9am Valeria will have the exams we were waiting to know if the tumor cells are alive or not. Based on the results, will depend if she will continue in the same treatment, or if will be any change or the best scenario....treatment will over!! No matter the outcome we trust on the will of our Heavenly Father. Without any doubt He had guide us during this past 2 1/2 years under his protection. Why be afraid now? Only knowing Valeria's performance during all this time we have the vivid testimony of HIS power and will over any medical opinion.
Of couse!!! YOU HAVE AN ENORMOUS CREDIT...your prayers are along with us in all times.  Other testimony of the power of praying is Valeria's recovery after the surgery she had on August 20.  That monday she left the hospital at 7pm without problems...just a little pain, but is normal!!! Tuesday she was good, Wednesday she had some nausea, but after that she was great!!!

The exams results are on Thursday, August 30....imagine that is my husband birthday #40. CONGRATULATIONS!!

I will write to you ASAP!!  God bless you all...A BIG HUG! NAYDA




2007-08-18 GREAT VACATIONS and NEW SURGERY....

On Monday August 20 Valeria will have a surgery to place back a "permanent med-port".  the procedure should be like an hour and may start around 10:45am.  SO PLEASE TAKE A MINUTE TO SEND US YOUR POSITIVE ENERGY PRAYING TO GOD TO SEND HIS ANGELS TO VALERIA AND THE DOCTORS DURING THE SURGERY!!!
~~~~~~~~~xoxoxo~~~~~~~~~~
   What a worderful days we had...first we went on 8-06 to Six Flags at New Jersey for two days and stayed in a near hotel. God gave us beutiful summer days with some clouds, but no rain. And He sent everybody to work!! Because the park was not crowd, it means No Lines to the rides!!  We went over & over with no end. Literally we close the park!!  the third day in the morning we visit the Six Flags Wild Safari, in which you go in your car and animals are just free around you...it was fun!  After that we drove to Maryland and stayed in a good friend house, Debbie and her husband Xavier. This family made us feel at HOME!! They have a beautiful nice house with a big patio and kids just LOVED!! Because they are close to Washington DC we visited some points of interest, as the White House...just outside!!! 

You remember that Valeria's birthday-July 14- she was in patient, so we decided to officially celebrate it and she decided Chuck Cheese... so we invited another friends from Puerto Rico that live in MD with their kids, and in a last minute we CELEBRATED!!  She had her cake WITH REAL 10 CANDLES!!!!

Hey....keep in touch!! LOTS OF LOVE, and GOD BLESS!

Reyes Family... 
PS For Pictures click here: VACATIONS PICTURES



2007-08-02 What we can do?!!??!! Valeria was authorized to go to Dominican Republic BUT was not allowed to swim or get wet on the upper body(on her left upper chest corner she has an external temporary line, that can not get wet).... Because it doesn't make any sense to go, we decided to cancel the trip!!!!!  Of course Valeria was very sad and I was not less, but Gerardo & me started to think on a PLAN B....so we decided to go two days to Six Flags in New Jersey, then 3 or 4 days to Baltimore, Maryland.  I have a VERY GOOD FRIEND, that lives there and had invite us many times to visit her. Her name is Deborah, she studied with me since elementary school. 

I'm sure the kids will have a lot of fun on the park....and Valeria finally will have some fun on this Summer.  

It is a blessing to have alternatives when you find a "NO" on your road.  I can not said that I didn't cried...but I was crying more for frustation and thinking on Valeria's reaction. But after few hours everything was in calm!!!  I just want to think of what God is protecting us...?

Thanks for be part of our story!!
GOD BLESS YOU!!

NAYDA



2007-07-26 FINALLY SHE IS OUT AFTER 18 DAYS!!!  YES, Yes, yes!!!!  Valeria is a lot better, no fever, no diarrea, no nausea and no bacteria!! As of today she has no confirmation that the Adenovirus is out, but we believe is over because symtoms are not present. ANOTHER GOOD NEWS is that the brace she had on her right arm because of the fracture is out!! An x-ray showed that her wrist is good now. To see pictures during her hospitalization click here "PICTURES"
     So, only positive energy is around....kids are still going to  the camp everyday, while Valeria goes to the hospital Monday to Friday to receive her Irinotican Chemotherapy plus her other regular appointments: Physical & Occupational Therapy, Neurologist, Psicologist, etc.. This is a full schedule, but as long she comes to the hospital as an out-patient is no problem, we can handle it.

     Another good-news..is a very good chance that we may have few days of vacations at Dominican Republic next week...we had those plans for February 2006 but doctors order to cancel due a fever that Valeria had.  So keep praying that we can make this trip now....

Thanks to all of you that sent a message to Valeria for her Birthday..WE read ALL of them!! I can tell that this was the birthday with more "messages" I never saw!! Valeria received more than 100 emails, guestbook notes and postcards, plus a lot of presents... THANK YOU, THANK YOU, THANK YOU!!



2007-07-18 16 days in the hospital!! Yes, Valeria still hospitalized! As you know she was treated with antibiotics for a bacteria, plus the med-port was removed by surgery.  A day after the surgery she came positive to a virus on the stool. Fevers have not stop, and the same bacteria of the beginning re-appears yesterday!!  The main concern is the fevers and a strong diarreas she is having, maybe caused by the antibiotics plus the virus.  Because of the virus we still on a private room, which is a good thing, we can talk or watch tv, turn the lights on or off whenever we want, etc...
On the 16th at 9pm the MRI she had pending was performed....as a preliminar result, the TUMOR IS STABLE, THANKS GOD!!  This is very important, it means she may continue on the trial medication (chemo & antibody).

sorry, I have to go now, tomorrow I will add some pictures of her birthday and tell you more!! LOVE, NAYDA
THANKS FOR YOUR MESSAGES ON THE GUESSBOOK and most important, Thanks for your prayers.




2007-07-12 Still in the hospital! On the 10th Valeria had a procedure to remove the "med-port" she had placed since August 2005. The surgery last for 1 hour 10 minutes. The port had a bacteria that was causing the high fevers. Also they placed a "temporary port" that will last about 3 to 4 weeks.  As of today she still on pain, so she is having pain medicine that makes her sleepy.  Yesterday morning one of her cultures came positive to a virus so she still with the diarreas and fever. Because of the virus we were isolated and moved to another room. At least we are in a private! For the other side her blood counts are good!! She was not eating to much, but today ate a little more. I don't want to guess when she will be out, HOPE SOON!!!  My mother is here on NY helping and taking care of the kids and Uncle Gino went back to Portland to work!! 
 
THANK YOU UNCLE GINO YOU ARE VEEEEEEEEERYYYYY  SPECIAL TO US!!!!!!    
Also THANKS to all of you that wrote to Valeria on the Guestbook.  I love to seat by her side and read it to her...  And THANKS to all of you that were praying during the surgery and for Valeria's HEALING !!  KEEP SENDING MESSAGES ON THE GUESSBOOK, WE LOVED!!

Because Valeria's birthday is Saturday the volunteers from the playroom area are preparing a birthday party at the her room on Friday....it will be nice!!!

Well, I'm not going to lie, I'm very tired! My mother is going to stay tonight with Valeria in the hospital and I'm going to sleep with the kids in the apartment.  Gerardo, my husband, arrives tomorrow morning...we are so happy!!!  Specially Valeria, she is a REAL DADDY'S GIRL!!!

Keep you posted...A GREAT HUG TO ALL!! NAYDA

2007-07-05  Up and Down!! during the last week of June Valeria and her siblings were scheduled to be on a camp, but it was not possible.  Another family were in the hospital with a kid with chicken pox(even not a patient)!! Can you imagine!?! What they were thinking?...so all the patients around him that day were isolated!! For that reason Valeria and her brothers missed the camp on the only days she had off-treatment during June. I was so frustrated, but what I can do??  Then Maximo got sick for few days...It was a nightmare..
As of today Valeria does not has chicken pox! THANK GOD! But on Monday, June 2, she started to have a high-fever, even with the tylenol it still. So doctor decided to admit her.  She is hospitalized in Memorial Hospital having some blood cultures, her chemotherapy and other tests...as of today fever still present with some nauseas, vomitting and headaches. This is not common on her!!!! Since her first chemotherapy on April 2005, she never had nauseas and vomits and a real fever only on October 2005. (She had one day fever, due to a virus on Feb 2007). 
We are praying that doctors may find soon where the fever comes from, so she may get better to be as an out-patient again and go to the apartment!!  She was not hospitalized since October 2005...so for us is an uncommon event.  Her father left to work to Puerto Rico on Sunday July 1st, without having an idea that this will occur. But God is so generous, that two families of Ronald McDonald House took my other kids with them until July 4 that the famous, Uncle Gino arrives to New York and is taking care of them...or them are taking care of Uncle Gino!!!??? Ja, JA...
Valeria's next MRI is on July 17..we let you know!
WE PRAY FOR HER RECOVERY, HOPE YOU JOIN US!!! WHAT ELSE WE HAVE IF NOT THE PRAYERS AND GOD?

2007-06-11
   Hello! Finally the results!! MRI showed that tumor is shrinked another milimiter!! It is not a big reduction, but is very important to has consistent good news! Her Doctor is very positive with this results. Next MRI will be on July 17 and on August 28 she will have an MRS, in which we may see the tumor chemistry and to know if it still alive or not. PLEASE CONTINUE WITH YOUR PRAYERS!!! 
    Summer is over us and we are very happy with the warm weather!! As you know we are used to it in Puerto Rico. We have no plans to go to PR for now because of Valeria's treatment, but we can enjoy here at NYC visiting the parks, getting wet on the sprinkles, walk by the river..etc.  Valeria loves to get wet in the parks, and her siblings too!! For me is easier because we don't have to wear to much clothes (jackets, etc).  Valeria and her brothers will go in the end of June to camp that is offered to cancer patients and siblings.  For sure they would have a GREAT TIME!!

These next months until the end of August are very important on Valeri's treatment, she will finish her second year on this trial treatment (chemotherapy)....keep you posted!!  God bless you all...a BIG HUG! NAYDA

2007-06-05
Today Valeria will have an MRI at 6pm. We invite all of you to make a short prayer at 6pm!!! She has one each 6 weeks to see her progress.  Please keep with your prayers in order she will have  a calm exam. Her Dad will be inside with her..she loved!! He gives her a lot of peace and good humor!! Next Friday we may have results!!!  Regarding her right hand, it is bettrer, but still needs more time with the brace. Keep you posted!

2007-05-20 
First Comunion!!! Valeria was beautiful on her white dress!  She was so nervous & excited..she cried a lot!  For us were so important that moment in which she received in the Comunion Sacrament the Body and Blood of Jesus!! Jesus gave his blood to save us and now our daughter is receiving it through the comunion!!   In church were a lot of relatives and friends, after the mass we went to the church's activity room and shared with them.  THANKS TO ALL OF YOU THAT WERE PRESENT WITH YOUR PRAYERS, NO MATTER THE DISTANCE!!  To see the short video  you may click HERE!!

2007-05-14
Finally, today we are going to Puerto Rico!! We don't go HOME  since June 2006, almost a year!! Valeria & her siblings are very excited...  On our visit Valeria will do her First Comunion on Saturday, May 19... 

2007-05-07
Yesterday night we were at Ronald Mc Donald House watching Oscar de la Hoya Boxing fight and celebrating 5 de Mayo.  Valeria was playing with other kids and felt.  She fracture her right wrist, she will wear a brace because on that hand she involuntary movements and with a cast on would be to painful.  She will recover with no problem!!