Significant Shrinkage!!!

Hey all,

It has been a busy week around the Valle house. Monday we headed to San Francisco. After getting her bloodwork and a nap in Natalia wanted a dinner of her newest fav...SUSHI! Edgar asked her if she wanted to walk or drive, she said walk. As we were staying at the Family House on 2nd & Irving, right across the street from the hospital, we were about 3 blocks from the resturant. Natalia made 3/4 of the round trip on her own steam. After a goodnights sleep, we went over to her MRI at 8:30am. At 9:30am, we were told it would be another hour before they could do the MRI. She was scheduled for chemo at 10:45am, needless to say we didn't make it. We were told to go straight in to see Dr Banerjee when we finished the MRI and then to chemo. Sophia was not impressed that we left her sister with the MRI people but at least we got some food down her while we waited otherwise she would have been impossible to control. Natalia got out of imagining at 12pm and we got up to Dr Banerjee's by 12:30pm and waited. Finally, Lizzie, the nurse practitioner, told us to go get Natalia some food because we were in for a long wait. Yes very long...Just before 4pm the doctor came into to see us. Asked how Natalia was doing and Edgar gave a run down on all she had been up to. When he ran out of steam, that is when we heard "well all this concurs with what the MRI shows. There has been significant shrinkage in the tumor. Enough that you can see even with the naked eye." Praise to God! Chemo started at 5pm and finished just before 8pm. Since we wanted to celebrate at home we left San Francisco just after 9pm and got home just before 1am.

She was too wiped out to go to school on Wednesday so our first day back was Thursday. Boy was she glowing when we picked her up at lunch time. She had accomplished a lot more then we expected her to be able to. She is excited and happy to be back. She will have another 4 treatments of the Avastin & Irinotecan (chemo). So 8 more weeks then another MRI. By the end of the 1st week os September she will be off the steriods and hopefully her body will produce its own.

Love to you all,

Roni

Weldon Elem Here I Come!!!!

Well, it's Monday afternoon on what is the first day of school, and we are at Family House in San Francisco. Natalia is taking a nap after doing her blood work at UCSF. Tomorrow morning at 9am she has her MRI and then clinic with Dr Banerjee at 1pm. The new chemo seems to be working but we won't know for sure until tomorrow.

8/12/08 Edgar and Natalia were up here for her last chemo session and clinic. Dr Banerjee asked Natalia if she would be starting school soon. Edgar replied "I don't know. Can we?" Dr Banerjee "I don't see why not." Praise to God....Mama got on the phone the next day to Clovis Unified administration, after not making much head way we all just went to Weldon to find out what she would need to do. Just walking into the office was a rejuvinating, strengthening and warming experience. We love Weldon!!!! Come to find out they had started the process for her at the end of last school year. They were just waiting to see if she was strong enough to come back. Wednesday morning she will enter 1st grade in Mrs. Hansen class. A huge thank you to Mrs. Yager for helping Natalia to finish kindergarten and for being there with awesome support. She helped to instill a love of learning in Natalia that made her want to come back for fall. Natalia will be doing half days for now and with more strength will come more time at school. I was able to sit down Friday with Mrs. Hansen and we talked about Natalia's strenghts and weakness and how to give her more of the ability to just be a 1st grader. I truely felt like a weight had been lifted off my shoulders. Not only is Natalia getting stronger but she will have the opportunity to be a kid again. What an incredible blessing!

We must name a few of our pillars of strength at Weldon: Deanna, Principal Lozano, Mrs. Yager, Gail, Sandy, Mrs Hansen, and the PTC. I know there are more but I'm already crying. Thank you for being there because you helped get us to where we are now and there is no better place in this world then in your hearts.

Love to you all,

Roni

Cancun!

Well, what can I say...it was hot, it was beautiful and it was the experience of a lifetime. First we would like to say thank you to Lori and Shelly, Natalia's wish grantors. Without them our special time would not have been possible. We would also like to thank The Law Offices of McCormick, Barstow, Sheppard, Wayte and Carruth for sponsoring Natalia's wish.

We had an awesome send off from Fresno. We were picked up at 3:45am by a stretch white limo...both girls eyes almost popped from their heads. Natalia only said "oy yeah" while Sophia danced around. Friends and family met us at the airport to send us off in style. It truely made it special to have them all there. It took nearly 5 hours to get to Cancun...needless to say we were tired and ready to tear our hair out when we finally got to our room. All we wanted was food, showers and sleep. We had an excursion early the next day to get ready for.

Xcaret! We send tons of thanks to Viangy Rocha and the staff at Xcaret. She told us that anything thing can happen at Xcaret and that dreams can come true. For this family she truely made that possible. The girls swam with sea turtles, fed a manatee, lounged on the beach under an umbrela sipping mango daquaris and then the 4 of us (the 4 of us only) swam with 4 dolphins. We have so many happy memories from this place that our vacation could have ended there and we would be happy. It was the adventure of a lifetime.

The sea turtles were incredible. Xcaret is raising them from eggs to around 7 months old before releasing them to wild. they have a goal to release 7000, so far, they have released just over 2000. We went to a little beach in the turtle lagoon and their handlers started with a small turtle for the girls to pet and moved up to several larger ones. Then it was into the water were they got to swim with these beautiful creatures. Then it was quick over to the manatee lagoon for feeding time. These are big, strangely beautiful, peaceful creatures were amazing. They are so flipping big but are extremely shy. When Natalia 1st sat down she had on her Tevas, they have a bright green swoosh on the bottom. That poor manatee must have thought it was strange new lettuce because he wouldn't accept the fruits being offered just kept smelling her feet. Well, we took the shoes off and then the manatee was happy to eat all her fruit but kept tickling Natalia's toes. We were going to swim in Xcaret's underground river next but Natalia said no she was tired so Viangy took us to the beach for some relaxation time before her next surprise. The girls rested, ate and swam in the ocean while relaxing under the beach umbrela. Then off to our last surprise...a swim with the dolphins. Fifty thousand cheers to the staff for making this one of the most beautiful peaceful experiences of our lives. We were by ourselves with 2 trainors and 4 dolphins. We got to interact and just swim while they swam around us. Yes, they even gave us pics and video of the experience. We were so touched by this whole day that even now I still cry when I think about it. They went above what we could have dreamed of experiencing. Thank you from the bottom of all our hearts.

We met up with Edgar's father, his wife and sister on Friday night. Both girls needless to say were sound asleep after the day at Xcaret. Saturday morning we had a wonderful breakfast together and they got to meet the girls. Then off to Isla Muerjers to the Dolphin Discovery. The girls 1st boat ride. Spohia loved it, Natalia not so...the rocking while her balance is off...Anyway we got to experience dolphins with a larger group. It was a good day with the family and when we got back to the hotel one of Edgar's lifelong freinds (and best man at our wedding) Enrique was waiting for us. Having his family and friend there truely helped bring some peace to Edgar. It was the first time in almost 7 years that he had seen them. We all went to dinner at The Shrimp Bucket that night. It is the Senor Frogs for the family crowd. Edgar explained our trip to the manager and he and the staff helped make another incredible memory for our family. We had so much fun. Our waitor made tons of balloon animals for the girls and then had all the staff come out so we could take pictures with everyone who helped create this wonderful night. Sunday was our day at the hotel beach, just chilln and playing in the water. We made our sand castle and got our sunburns. Nagcheilli and Enrique left Sun night and it was sad goodbyes. We relaxed Monday with the grandparents and they left that night. Tuesday it was back to Xcaret for their evening Extravaganza. This show is amazing. It starts with pre-hispanic Mexico and goes through the regional music of today. The girls loved it and we had reserved seats so it was easy access for the all terrain stroller.

Wednesday we headed home...another 5 hours travel with 2 busy girls...this time though they slept most of the way. We were met by wonderful freinds at the Fresno airport that helped to revive us and remind us why we love home. Back into a limo for the trip home and straight to bed. We had to rest up because another of Edgar's freinds Gabriel and his son Pablo were coming over the weekend to visit. It was wonderful to visit with them. Natalia kept singing "Pia and Pablo sitting in a tree..." The 4 years olds were fast freinds.

Love to you all,

Roni

Are We Having Fun Yet?

Hello All,

God has truely blessed us by sending wonderful people to enrich our lives. We feel everyone's love and support just like Sophia's fishy blanket wrapped around us. We really believe that it is thanks to all of you and God above that we are able to carry on. We have been on some wonderful adventures over the past 2 weeks. We visited Fresno PD Skywatch, toured the Cat Haven, watched the K9 unit train and were able to express our gratitude to the community at the Elbow Room fundraiser.

Where to start...Natalia has grown stronger every day. She continues to put back the weight she lost over the past few months. She is eating and drinking like a champ. We still stick to softer foods that are easy for her to swallow. She is able to finish her sentences and talks and talks and talks...awesome! She makes it to the bathroom again and walks around the house with little to no aid. Her balance is still off and when we are in unfamiliar territory she is shakey but all in all much, much stronger. Elbow Room day...started at 5am with Natalia asking if we were ready to go...hold on tiger not till 1pm. She was excited to meet and greet everyone. Once again she walked the room and spoke a little to people who came out to show her their support and love. Boy, was the vibe in that restuarant incredible. But when she was done that was it. "I'm done let's go home." and away we went. We got the opportunity to personally thank some of the people who helped us with this journey. A HUGE HUGE thank you to EVERYONE who made this event possible.

We started our adventures by visiting Skywatch. The girls got to sit in the helicopter and feel like big shots...how to know Natalia was feeling better at this point...people who didn't know her that well could tell she was excited just by her facial expressions. Of course, the OH MY GOD when she saw the copter helped a bit. Melissa Herring took tons of pictures for us.

The Sierra Endangered Cat Haven...WOW! A huge thank you to Julie for this opportunity. If you love the big cats you must head up Hwy 180 toward Sequoia National Park and visit this place. They house all different types of cats, tigers, leopards, jaguars and many others. This was a wonderful chance for all of us to see these animals up close. The volunteers are knowledgable and make the tours a blast. The enclosures the cats are housed in allow them a fun enviroment while giving you a chance to get a really close look at them. The girls screamed and laughed their way through the park.

Cats one day dogs the next. We were a bit afraid for this one. While the girls love dogs and have met Sepp before how were they going to react to seeing the K9 unit train. I lost my fear of that when the first dog came up and licked their faces and begged to be petted. Now keep in mind these are BIG dogs. The smallest of them is bigger and heavier then Sophia and some rivaled Natalia in size. The girls giggled their way through the whole beginning of this adventure. Then came the for the bad guy to suit up and the dogs to go into action. The girls cheered the dogs on. They really understood that, just like Poppa, they like to play and have fun on their down time but when they go to work they are all business. They cheered the loudest when Edgar put on the arm glove and Sepp grabbed him..GOOOOO Sepp! Get Him!!! A huge thank you to Gene Johnson and the rest of the officers...PS Natalia doesn't take off her K9 t-shirt.

This Sunday, there is a party at the FPOA headquaters for Natalia. Make A Wish is giving her a donut send off party before we go to Cancun. We can not wait...more adventures to come.

Love to you all,

Roni

The Best Medicine

Hello to you all,

I know I left you all with bad news the last time but we can not dwell on that. Natalia is home with us and that is truly the best medicine for us all.

The change in her has been incredible. From the time we got home late at on Friday the 11th to now, we have 2 very different little girls. The girl on Friday was tired, weak, drooling and close to the edge. The Natalia today is vital, loving, fiesty and ready to conquer. She has enjoyed having many visitors this past week and has glowed with each visit. We had a nurse from Valley Children's Home Care visit us Monday to teach us how to us the feeding tube and pump. I learned how to put it in and set the pump so she could get enough nourishment to keep going...Edgar woke up to check her at 3 am and found her nose bleeding and formula coming out. We stopped the feed and called the nurse. They told us that it was probably reflux due to her tummy being full and it was causing irritation in her nose. Her tummy was full because she ate and drank like a champ all day Monday. Tuesday afternoon she took the tube out of her nose again. We made her a deal...keep eating and drinking like she had been the past few days we would leave the tube out otherwise straight back in with the tube. I am very happy to report that she is eating and drinking more today then she was on Tuesday.

We also had 2 more wonderful people enter our lives...Shelly and Lori from Make-A-Wish. They our Natalia's wish grantors. They came Monday night to ask Natalia what she wanted most in the world to do...she said go to the beach. Tuesday Shelly called to say Make-A-Wish would be granting her wish and they are sending us to Cancun on the 31st July. They even helped us rush all of our passports.

Yesterday, we took family portraits at Milne Photography. They turned out incredible. His studio is off on Cedar and Nees and those of you in this area need to check out his work. The portraits he has showing in his studio and books are brilliant. Today is the benefit at the Elbow Room. Natalia is strong enough to really enjoy seeing everyone. Should be a blast.

I will write all about our adventures in the next blog. We are doing some fun stuff for the memory books.

Love to you all,
Roni

Hello All,
As many of you may know we are at UCSF for Natlia's evaluation. It is with a heavy heart that I must tell you that the tumor has grown and spread to her brain stem. We are spending the night in the hospital where they have inserted a feeding tube because she lost another kilo in the past 10 days and is having difficulty swallowing. The MRI she had today showed that the tumor has grown since the last MRI 10 days ago. She will undergo a new chemo tonight. It will be administered by IV and will have to be done once every 2 weeks. This will only slow the growth down some not stop or contain it.

Funny how small Fresno can be at times...Edgar called John Herring (his liaison officer) with the news. John was in Diane Dyer's (detective w/ Fresno PD) office. Turns out she is good friends with Shelly, Natalia's wish grantor for the Make a Wish Foundation, she called Shelly. Shelly called me before I could even called Mom back to ask her to go over to my house to find Shelly's phone number. We would like to take Natalia to Cancun so she can enjoy the ocean. The ocean has always been her peace. She spent the first 5 months of her existence in my tummy aboard the Ocean Princess. She asked several times just before she was diagnosed to go to the beach. It is time to give her a beach and ocean place that she can truely enjoy. Cancun has always been special to Edgar's family and now it will be to us.

God has more need of her in Heaven then we do here on earth. She a special angel to all who know her and now she will be able to serve more in need. He is just giving us a little more time to make memories and say goodbye before he calls her home. Please do not think we have given up hope for a miracle or will just roll over. We just want her time here to be as special as we can make it. Please do not look at her and feel pity. She is a warrior without equal who has fought the good fight. She is a 6 year old girl who united a community as well as people across this land with a common purpose. She has shown many people to look outside their own problems and see into the lives of others in need. She has lived her life with compassion, joy and humilty. She is someone I admired above all others.

Much love to you all,
Roni

Home Again

Hi All,
Natalia and Edgar came home on Wednesday. Both exhausted and ready just to relax at home. She shines when she is at home. She gets tired very quickly and like the Energizer Bunny is back in shape after a quick nap. Almost impossible to get her to do if Sophia is anywhere in the house.

We are in the process of moving...next door. The manager's unit is next to our apartment. It comes with a small laundry room and the VandenBerghes have allowed us to use the addtional attached room for a play room for the girls. We were able to separate the bunk beds and give them their own space. Natalia's bed was the top bunk and we didn't want her to try climbing the ladder at all. So now they have their bedroom and their playroom. It is wonderful. Natalia thinks its funny and can't wait to finish moving.

We head back to UCSF on Wednesday to do her re-evaluation work. She will do blood work on the 9th have her new MRI on the morning of 10th and we meet with Dr Banerjee at 3pm on the 10th to discuss everything. We will be staying at the Koret Family House once again but with the small difference of it being the one on 2nd and Irving. Right across the street from the hospital.

Much Love,
Roni