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

Checking Out

Yeah!!!!

Natalia gets to check out of the hospital today. She wants "to get the heck out of there". They did the MRI on Monday and it showed the steriods had taken effect and the swelling had gone down. She talked to me on the phone this morning and her little voice sounded so much stronger. She has one more radiation treatment on Wednesday and then they get to come home. Edgar is going to spend today washing and cleaning their room at Family House so they can head home after Natalia's treatment.

Huge, huge shout out to the Koret Family House. We have been staying at the Family House on 10th and Irving. I do not know what we would have done without this place. Dr Banerjee's staff set us up with them when we went to San Francisco the first time. We got to stay there for free. They just ask that you keep the house clean and nice. We have never had to worry about having a place to lay our heads. The staff is incredible!!! They take away that huge worry that you have when you are away from home (a safe, clean, comfortable place to rest and recover).

Much love to you all,
Roni