When you're feelin' blue

The girls favorite song...imagine cruisin' down the highway singing at full volume...you can't stay sad. The chipper sea sponge always can always brighten our day with his words...listen close, there is always something to smile about, no matter how bad things seem at the time.

Natalia

Smiles, Laughter, Playing, Joy!! All these things are Natalia. While she is still not wolking, she is becoming more vibrant every day. She still has small headaches that are mostly brought on by loud noise but nothing like a week ago. She loves to play catch and toss the rings. She loves to color and talk...boy can that girl talk. She is sharpening her humor and makes us laugh almost constantly. Of course, the new tool of "ow,ow,ow it hurts" to get us to her quickly that really doesn't hurt she just wants our attention immediately, is not cool. It is to her because we scramble like crazy when she says it. Also, there are the things that only Mama does right and others that only Papa does right and she is very vocal about letting us know which one of us she wants help from. She has definate ideas on what her meals should be...eggs with salsa for breakfast, soup for lunch and we must tell what dinner is going to be at lunch time. The day after a chemo visit is Sushi night...yes, she loves sushi. Her blood work looks great once again. "Great" is the nurses word for it. Once again thank you Juice Plus+. Edgar and I swear that is what is helping her blood stay in such good shape. 9 months into cancer and (knock on wood) she has not had any other health issues but the tumor & its side effects. She has only had short term hospital stays and gets to come home with us. She gets to return to Fresno where the city has shown her such love and support that it helps give her the will to carry on the battle. She cheers when she hits Herndon and 99. Yes, we are home!

Much love to you all,
Roni

PS...I want to do a movie night soon so I'll be in touch. It's the one thing I can think of to do that she won't have to move around much...any other ideas let me know.

Explaination of Tiraid

Hey all, Edgar made me talk everything out last night so now I will talk it out with you.

Those of you who know me well will understand part of the rant that I had yesterday. When people tell me I'm such a strong person for being able to do the every day things I do such as go to work and carry on with Sophia's lessons, I feel like such a fake. I'm not any stronger then any other parent would be if this happened to them. I cry at the drop of a hat when I have to talk about what Natalia is going through. There is a huge reason Edgar is the public voice of this family. He can keep it together in public much better then I can. My morning showers are my breakdown time. I get my 5 minutes crying in before having to face another day of not being able to fix Natalia's booboo. I feel like fragile glass. I try to carry on through the day as if nothing is out of the norm because cancer is now our norm. It's there and there is nothing we can do about that.

I can not honestly see how any of you would not be doing the same thing. Where our children are concerned a good parent is willing to move any mountain to make sure they get the best from us that they possibly can. If you curl up in a ball of grief and ignore the rest of the world so will they, what kind of life is that? Positive thinking and positive behavior go miles toward recovery. When you get knocked in the face with bad news you take the hit and respond with "now what happens next". You begin to recover faster and do not let the bad take over your life. People who claim they are at peace with the beast of cancer (at least to me)have to either be glossing over the truth(notice I did not say lying) or out of touch with reality. This is a war and we are not going down. Strong I am not, stubborn I am totally. I made my peace with God in July when it looked like he was going to take Natalia. He gave gave her back to us and told us the fight was still on. Well, I am not going to give her back any time soon. While I love the warm blanket that your support and kind words wash over me and help to make the booboo a little better, do not tell me I am strong...stubborn, tenacious...those I'll take.

Much love to you all,
Roni

Merry Christmas

I hope you all had a wonderful Christmas. Ours was good...no great because we were home. We spent Christmas Eve at my parents house having homemade chicken noodle soup...my family seldom does the can stuff unless we are in a hurry. The girls love to be around their grandparents, aunts, uncles and cousins. Natalia can't run around and play so having Pia and Preston out of her sight was hard on her but they both made an huge effort to reign in their energy and play in front of her...not to mention all the really, REALLY bad knock knock jokes. I guess you have to be 4 and 6 years old for some of them to even make sense but they laughed their little butts off. It was wonderful to see them all playing together. My great nephew Preston is only 5 months younger then Natalia and they have always been thick at family do's. It was amazing to see how gentle and attentive he was to Natalia. She lasted far longer at Mom and Dad's then we expected. Expanding lots of energy trying to keep up with everything going on around her tires her so quickly that we only last about an hour at most events. Even just walking around the mall wears her out.

Christmas morning...wonderful gifts, bright happy faces and tons of mocos. What did the girls and I bring back from San Francisco? Head colds! Pia was finally getting over her head cold (she had it for a week) when we rushed to UCSF. She had generously shared it Natalia and I. Between a small cold, little sleep and high amounts of stress by the time our bodies relaxed at home we had massive head colds going. We were supposed to go out to my brother Tony's for Christmas Day. The girls love going there. They have horses, dogs, cats and tons of room to run. Did I mention the trampoline? It is kids paradise there. We held out hope until about 2:30pm but Natalia's cheeks kept getting redder (a sign her body is not doing well) and the coughing had begun. Natalia has seasonal asthma on top of every thing else that seriously flares when she has a head cold...out came the inhalers. Pia's eyes had dark circles under them and she just wanted to lay in bed a watch her shows. My head felt like it needed to be removed and washed out. Edgar and I spent much of the afternoon trying to convince Natalia that she desperately needed a nap but she fought it all afternoon and instead constantly blew her nose. A good thing because by 6pm she was feeling and looking a little better. We still have the dumb colds but they are on their way out the door.

Natalia and Edgar head back to UCSF tomorrow. It will be a follow up to the hospital visit, regular clinic and chemo visit all rolled into one. Once Christmas was out of the way, I began to focus on this visit. It's not that I am freaking out but I am feeling some tension about this visit...the same kind that I get before an MRI. I feel good about how she is doing but I have spent the last few days on the web looking for blogs about people going through the same experiences we are. All of the support that we receive from you all is awesome and makes me feel incredible but there are times that I just need to know that someone else out there knows what we are going through. That all these emotions that I keep feeling aren't a sure sign that I am slowing going insane. A few of them just irritated me and a couple truely touched me. The words "you're such a strong person for being able to carry on" no longer bring comfort...the numbness has worn off and those words just tick me off now. What do honestly think you would do if it happened to you? Crawl under a rock and hide? NO! Not just NO but HELL NO. When you are a parent part of the job description is you carry on and try make your child's life, no matter what they are going through, the best it can be. I read a lot of different children's stories over the past 2 days and been up until 1-2am doing it...major thing for a person who is usually asleep by 10pm. I learned that yes even going through cancer there are some people out there who wax on in their stories about the peace that their God has brought them during their child's illness. That also irritates the bejezzers out of me. My God has given us trials that need to be faced on a daily basis and they are not fun and they don't always bring understanding...but they do bring growth and awareness, which leads to moments of peace before the next battle begins. Do Edgar and I fight more often? Yes, because who else knows the pain we go through on a daily basis? Does it bring us closer together and are we learning from these experiences? Yes, we are! I think without our occasional battles and yes some of them are epict proportion we would break rather then bend with all that we handle. It was comforting to know that I am not the only person feeling and handling the battle this way.

Thus finishes my tirade...Love to you all and thanks for listening, Roni

Home for Christmas

Yes, we got to come home last night. We spoke with Dr Auguste, the nuerosurgen who put in Natalia's shunt, on Monday bright and early. He said it was a fine line between the shunt being moved from 1.5 to a 1 on the 9th and the lowering of steriod. He did not want to touch the shunt for fear that it would cause greater pressure and more symptoms. It would be best for now to go back to the dexamethasone (steriod) and let it lower the swelling in her brain so that we could be home for Christmas instead of in the hospital. We could see a big improvement by Monday afternoon and by Tuesday she was doing well. When the doctors did rounds Tuesday afternoon they asked how we saw her and if we felt she would do well at home. We said we thought she could handle it so.....with strict instructions to bring her back if there were any other problems we made it home last night. She will go back on Monday the 29th for clinic and chemo.

Kudos to everyone who helps to make the holidays for children in the hospital a bright time. While nothing can replace being at home, the girls enjoyed their time there. I think , no I know, it is because they scored in the gift department. They have lots of new "cuddles" as they call stuffed animals. Natalia's favorite is a brown bear from the SFPOA (San Francisco Police Officers Association). Sophia's favorite were the barbie dolls from the Public Works. They took theirs minds off being stuck in the hospital for a little while and for that Edgar and I are very greatful.

Merry Christmas to you all. Thank you for being a part of our lives. Much love and warmest wishes to you all,
Roni

No News

Well, at least we have a place to stay. I called Family House yesterday afternoon and left a message asking if they had room at the inn. They got back to us that they had a 2 person room at the 10th street house. Thank God! A place to lay our heads and 2 person is perfect because it is only one of us and Sophia that will be staying in it. Edgar spent last night at the hospital and just now left for a nap and a shower. Sophia and Natalia are watching The Wizard of Oz and chillin in the bed.

They still don't know what is causing the swelling in Natalia's brain. It's frustrating for us because we physically see the signs from her last MRI on the 9th. They lowered the amount that the shunt was letting out because she was having minor headaches. Then on the 12th the bad headaches began but they would only come once a day...then they began to increase in not only intensity but frequency. The nuero teams says it is not the shunt from what they can see comparing the CT & MRI scans. So now we are left trying to find what else could be causing the swelling to occur. Not much is going on today, they did blood work but that is it. The hospital sucks at anytime but with Christmas just days away...The good point is we love the nursing staff here at 7 Long. They are friendly, cheerful and most important great with the girls. I just wish we could grease the wheels to find out what's happening with her little head.

Natalia had a special visitor today...Robin Williams stopped by for a visit. He brought an Eve toy from WALL-E and took a Polaroid. The staff came by to ask if it was ok for him to visit first. Well, YEAH! We tried to think of the last movie the girls watched with him and it was Mrs Doubtfire so they were impressed once we explained who was coming to visit. But the brightest point of her day...she was finally allowed to eat once the nuero team said they weren't going to do anything today after 11AM. I went down to the cafeteria to scavenge...they have hardly anything on a Sunday. She wolfed down a lot, she had 36 hours without food to make up for.

Love to you all,

Roni

Prayer Time

Hello all,
We are all currently at UCSF. Natalia has been suffering increasingly painful headaches and Friday began vomitting with them. Not a good thing to have when you have both a brain tumor and a shunt. We took her to Valley Childrens first thing this morning. They did a CT scan (all under the watchful eye of UCSF staff) and it was determined that she would need to be transported to San Francisco. Natalia and I flew and Edgar and Sophia drove. They believe there is a problem with the shunt. I will write more later when we know more but please everyone, pray Natalia gets relief from her headaches. She says they are a 9 on the 1-10 scale. It is not very often that she says something hurts bad but these are really wearing on her.

Love to you all,
Roni

News Front

Hi all,
We got some news yesterday. Natalia will do her regular clinic and chemo on the 29th and then we will all head up to San Francisco on January 12th. Natalia will have surgery at 7:30am on the 13th to insert her permanent port. They need to keep her overnight to make sure there is no infection but after that she will be poke free. Whenever they need to draw blood or give her an IV or injection (she currently gets poked twice every 2 weeks) they will just hook up to the port and there ya go. This is going to take so much stress off of her. While she is not afraid of needles they are really beginning to hurt and because she was on the steriod for so long her veins are weak and collaspse easily. This is just one more step on our journey and we feel it is a truely positive one. They were not willing to even discuss a port 2 months ago because they weren't sure she would be doing this well. Well look out cancer, Natalia is kicking butt.

Love to you all,
Roni

Life is Strange..but Wonderful

Hello all, long time I know. First off, the Stories of Light campaign for the Central Valley Make a Wish was a huge success. They raised over $94,000 to give children with life threatening illnesses a wish of a lifetime. Thank you to everyone for your support. Natalia and Edgar even did our local morning talk show, Central Valley Today with Alex Delgado, to promote the event. http://www.ksee24.com/programming/cvt/35394954.html?video=YHI&t=a Check out my little comedian.

Our Thanksgiving was wonderful. It is always a fabulous time when family and friends gather together. Not to mention the excellent food. I had a sinus cold that felt like my head was going to collapse at any moment but that was not about to stop me from having some pecan pie. Priorities you know...Both girls have decided Mama is correct, while pumpkin and apple are very tasty, pecan is the best pie.

The latest UCSF visit was interesting to say the least...Mama didn't sleep much between Thanksgiving and last night. Natalia had an MRI on the 9th. I always get tense while waiting for these. I have flash backs to others that weren't so good even thought I can see she is doing better. Dr Banerjee told us that the results were puzzling considering what she could observe Natalia doing. She was going to hold off on giving Natalia chemo until after the tumor board met on the 11th to see if a different course of action was needed. Finally, the morning of the 12th we had news...I love the tumor board. The great thing about the doctors at UCSF (in our experience) is that they get all the most experienced people into one room to go over cases and give you the benefit of their combined knowledge. The new spots that the radiation people had seen on Tuesday were not new at all. They were showing up more because contrast die had escaped into her spinal column. We are going to stay the course because it is working. While the main tumor has not shrunk in the past month it has not gotten any bigger. Natalia & Edgar will head up to UCSF on Monday for the regular dose of chemo. Also....Natalia has been steroid free since Thanksgiving day. She is taking increasingly smaller doses of hydro cortisone and is doing very well. She is becoming more active, while still not walking on her own, we finally got her to start playing Wii. Cooking Mama is her favorite.

Christmas fast approaches...thank you Marcy & AJ for the Snoopy counter, I don't have to answer how many days until Christmas. The girls know it, even down to the seconds(12day, 15hours, 4minutes & 26seconds). Sophia is hysterical...she wants absolutely everything advertised on TV...for her Birthday.(Not Christmas) I finally got Natalia to nail down their Santa wishes to only one thing, thank goodness. Pia wants everything, Natalia wants a My Little Pet Shop coloring book and special markers...I think Santa can handle it. I also have Santa's phone number on speed dial if any other parent requires it. It is truly amazing how quickly ANY undesirable activity stops when you look at them and raise the phone at this time of year.

Talk to you all later. Much love and kisses to you all,

Roni

What a Week!!!

Well everyone, she is down to 2mgs of steroid a day let's all pray for the best. She had a very exciting week...she started home/hospital school and guess who her teacher is...Mrs Hansen her 1st grade teacher. Natalia was about to burst on Tuesday waiting for her to arrive and then on Wednesday...and Thursday. She is excited to be doing school work again.

Words from Natalia..."Thank you everyone for checking on me. I am doing fine. I hope to have a fun day tomorrow."

I have explained the blog to her, that she has lots of people who check on her and want to know how she is doing. She thinks you all are cool to do that. This Tuesday she and Edgar (Sophia too if they can get her out the door) are heading to UCSF for clinic and chemo. Everyone is looking forward to Thanksgiving dinner at my Mom & Dad's house. Natalia wants to take something that involves broccoli...yes she loves veggies.

Then it is hold our breaths for December 9th and her next MRI...

Stories of Light...Light the Tower for the Central Valley Make A Wish Fondation...from now until December 4th The Central Valley Make A Wish partnered with PEAK Broadcasting & EYE-Q Cares are starting their annual fundraiser. The goal is to raise $80,000 to send kids with lifethreating illnesses on their wishes. The average cost of a wish is $5000. The money would help children up and down the Central Valley. We taped our story a few weeks ago and it is being aired on the radio. Edgar will be using his awesome speaking ability by going on channel 4 Central Valley Today on December 2nd. Come out to help celebrate the campaign Thursday, December 4th at 7pm...Palm Bluffs Tower @ 685 W Alluvial Ave Fresno, Ca 93711 (parking is available at Sebastian at the NE corner of Palm & Alluvial) Santa*Hot Chocolate*Carolers*Snacks*Carriage Rides We hope to see you all there, it is not only going to be a fantastic time but it is a cause that is extremely close to our hearts. Please click on the link on the right side of the blog to learn more about campaign and how to give.

Much love to you all,
Roni

Check Up Time

Edgar and Natalia headed up to San Francisco on Thursday for her check up with Nuerosurgery and regular clinic & chemo. The shunt is doing good and she is healing well from the surgery. Everything looks good. Thank the Lord! We can see it by looking at her but it's better when the doctors agree. Dr Banerjee wants Edgar and I to discuss putting in a permanent port. Many of you have asked us whether she has one and are surprised that she doesn't when she gets as much chemo and blood draws...well come to find out Dr Banerjee has not brought it up with us before because the doctors did not believe that Natalia would be doing as well as she is right now. With the grace of God and her new chemo Natalia is kicking her prognosis in the B-U-T-T.

Today we made it to Sunday school. Both girls are in new classes and they were glowing from the excitement of being back. We have almost made it several times over the last few weeks but Natalia stops us before going out the door because she hasn't felt up to it. The desire to go was there but her little body wouldn't let her make that step out the doorway. Today we not only made it to class but after her nap we made it over to her godmother's new home. Wow! Out twice in one day...of course she was wiped out when we got home but she managed to take her shower and stay up through the new Hannah Montana episode.

We also have begun to decrease the steriod dose. 1 mg every few days until we reach 2 mgs a day. We are currently down to 4mgs a day and I don't see any side effects but...so prayers from all that she does well this time with the decrease. We made it all the way to 0mgs for 3 days the last time before she hit the wall.

Love to you all,

Roni

The Next Big Adventure

Natalia has spent the past several weeks virtually chained to her favorite spot on the couch. She did not want to move from this spot and just watched the world go on around her. While her little body trapped her in place her mind was free to travel...and so she did. She quickly grew tired of watching cartoons so she searched for something new to watch...the Travel Channel. She could not only watch one of her very favorite shows (Anthony Bourdain...No Reservations) but she could venture off to different places. She spent the week before her shunt surgery talking of nothing but Hawaii so as we see more and more improvement we are making it our goal to get there for April...it will mark the 1 year anniversary of her diagnosis. She was originally given 6mos-1yr and we are going to kick that one in the teeth by celebrating life.

I ask any of you who has been to the islands for advice. Just click on the comment note below the blog and leave your thoughts. We'd love to hear from you...that doesn't just mean about Hawaii, if you just want to say hi that's great I read them all to the girls.

Improvements...to understand how far she has come you need to realize how limited she had become. She would go from the bed to the couch and no where else. She was frightened to move even the slightest bit. Every move would make her think she was going to fall. She tremors were getting bad again and there was no hope of getting her to recognize when she had to go peepee. But even during this dark time her mind has been at its sharpest. Her body would just not cooperate. She is practicing her standing without holding on...she is up to 25 seconds, she is doing leg and arm lifts for exercise. She starting to walk with a little more confidence, so instead of having to wrap our arms around her to get her to walk she will now just hold your arm while slowly moving. She is reaching for things and stretching while sitting. She is on the road back. What we see now is miles from where she was before the shunt.

Love to you all and thank you soooo veryyyy much for your prayers,

Roni

How to tell...

How to tell Natalia feels better...she wants to stand up for long periods...she wants to exercise her legs...she's joking with everyone...the sisters are argueing as only sisters can. If she is up to it after the long drive Tinkerbell and Ariel will be attending our church's Halloween carnival. Thank you all for your prayers we can see the evidence right before eyes.

Love to you all,
Roni

The Surgery

Good morning all,
It's bright and early Thursday morning and I can no longer sleep. Therefore, I've started laundry at Family House and am updating you all. It has been an exhausting couple of days. Natalia's surgery happened on Tuesday and went off without a hitch. She has 2 small incisions and a couple of bruises from running the cathiter(?) from her head to her tummy. She is beginning to move about the bed with more ease and we are beginning to see improvement with her overall movement. She gets a little woozy when you move the bed up and down so there has been no playing with it this trip to the hospital.

The really good news is that they should release her today. The doctors are doing their evaluation around 9am and hopefully after that off we go. We will stay one more night at Family House that way we are close to the hospital for one more night...just in case. This will also give us time to do all the sheets and towels laundry...or I should say gives me the chance. Edgar will be sound asleep. He has spent the last 2 nights at the hospital. He tried to get some sleep yesterday afternoon but...

Sophia has not done too well this trip. She has yelled, screamed, cried, thrown raving tantrums and generally been a nightmare. Morning tantrums I'm used to (Natalia and I are morning people, Sophia and Edgar are not) fact of life get used to it. Yesterday afternoon went to new heights...Edgar brought Sophia back to Family House for some R&R and let the fun begin. She left the room when he was falling asleep, played dress up in our clothes, played in Moma's makeup and pounded on the bathroom door while he was showering yelling that he had been in there to long. Did I mention she has taked mouthiness to new levels? I should also mention that she is her cutest and sweetest in front of everyone else. Papa looked like he had been throught the ringer when they got back last night. When Sophia and I headed back here about 8:30pm I asked her what was up, she might be a little wild but nothing like she has been this trip. She told me she was jealous. Sissy was getting everyone's attention and there was nothing left for her. While my heart was crushed, I had to explain to her that no matter what this type of behavior could not go on. She agreed after my hand was applied to her naked butt after another incident and I had my little helper back. The little stinker knows she can get away with more in front of people and does not fear most reprisals.

Anyway...we should be home in Fresno by Halloween night/afternoon.

Love to you all,
Roni

Surgery Tomorrow

Hi all,
Tomorrow is the day. Natalia will go into surgery to insert her shunt at 10:30am...of course we have to be there by 8:30am. Thank God! Dr Auguste will preform the surgery. We met with him today and he explained that unlike a normal brain that floats in its moving stream of water, Natalia's has clogged up and now her brain is becoming saturated, along with the added pressure. This is part of what is causing her problems right now. The surgery should take approx 2 hours and she will have 2 incisions, one on her head and the other at her tummy. We can't wait, it said if all goes well she will begin to fell the effects within a few hours.

The shunt itself will be programable. They are going to start with a generic "normal brain" setting but if she needs to have more fluid come out they can adjust the shunt valve with magnets. The tubing will run from the shunt to behind the ear and down to her tummy just under the skin...once again Thank God...does everyone remember how fun the feeding tubes were for us. I had visions of it being outside and looping down so she would be pulling it out of her brain...the nightmares we think about.

She is looking forward to having it done...not only to feel better but because she gets cool shaped bandage dressing and the beds move up and down.

Love to you all,
Roni

SOPHIA...Sophia...sophia

We get a lot of questions about how our youngest daughter is doing through all of this. Therefore, today's blog is dedicated to Sophia. She is little sister, best friend and partner in crime. She is a four year old going on fifteen. She is our "Pia". She does not miss a step. For instance, Pia on a typical day like last Monday...I had to go to Turlock for a managers meeting so Edgar was in charge of getting Natalia to Valley Childrens to do her blood work and Sophia to the pediatricans off ice for her flu shot. Pia held Natalia's hand through her blood work and then Natalia held her hand (Pia shares Edgar's fear of needles) and told her how to breath during Pia's shot. On their way home, Edgar received a phone call and of course he answered it and spoke on his cell phone while driving. When they got home, Pia got her pen and spiral notebook, wrote a few letters on it, ripped it out and gave it to Edgar. When he asked what it was the answer surprised him..."It's a ticket for talking on the phone while driving. It's against the law and you shouldn't be doing it."

She also wants things to "go back to normal." She wants her old house with her Winnie the Pooh curtains. She wants Momma & Papa's old bed and most of all she wants sissy to be able to play with her like she did before. She is a tough little cookie that does not want to be separated from us at all. If she is going to school..."who is picking me up?" If she goes off with her godmother..."when am I coming back?" She remembers being left when we were first going to UCSF to find out just what was the matter with Natalia and she is making sure that it does not happen again.

Sophia has 2 speeds in life...full throtle and complete stop. The closer she gets to complete stop the faster she moves. She can be talking to you one moment and the be passed out the next. She believes that her big sister has to try something before she will do it. While her sister is the general, Pia is a tactical master and nothing stops her once her mind is made up. She gives determination meaning. She is also completely adorable and uses it to her full advantage. Most people melt with just one look into those liquid brown eyes.

Simply put...she is Sophia.

Love to you all,

Roni

Made it Home

Hey all,
Just a quick note before I pass out from travel and stress. The results of the lumbar puncture were that Natalia's brain pressure was very high. They decided that, yes, she does need a shunt and they did not give her the Avastin part of her chemo because it prevents healing. That gives them a window to do the surgery. Thank God, we got a phone call when we got home this afternoon that they want to try to do the surgery next Tuesday or Wednesday depending on Dr Auguste's schedule. So, please pray that this surgery goes on as planned and goes well. Several people have told that we should see a difference in her within a short period of time.

Love to you all,
Roni

What's going on?

Hello All,

Natalia is still trying to get over her cold. She starts off good in the morning but by 11am is wheezing and coughing again. As long as she gets a nap in the afternoon, she is usually ok in the early evening. She has a tough time trying to cough so it is hard to get the flem out of her lungs. Edgar and I spent a sleepless Wednesday night as she tried to get it all out. We kept in contact with UCSF (tells you how bad it was) through the night and managed to keep her out of the ER. About 4am she coughed up a mucus plug and she drifted peacefully off to sleep. She has watched a lot of movies over the last several days, as she is not allowed out until this cold gets under control. Her new fav is Indiana Jones and the Crystal Skull. We watched it for a slumber party (I figured she would last 20 minutes then want to sleep) and she made it through the whole movie and wanted to chat about it afterward. Indy is truely a hero for the ages.

We are preparing for our next UCSF visit this upcoming Tuesday. They will do the spinal tap, chemo and ultra sound this visit. While it is kind of frightning because it just is, I can't wait for the news to see if they are going to have to do the shunt or not. She has reached a plateau and just can not get any better.

I finally included the sites for Family House and the Central Valley Make A Wish. If anyone would like to make donations to these wonderful organizations please check out the web sites. These organizations have helped make a huge difference in our lives.

Talk to you all soon,

Roni

The Haps

Hi everyone,
It has been a while since I updated www.natliasfriends.blogspot.com so I thought I'd send out a personal note to our closest supporters. We love all of you and want you to know that without you all there what we are going through would be unbearable. I've really seen these last few weeks how blessed we have been by having you in our lives. God put another family going through a similar situation in our path. The difference...they don't have the advantages we have been given. They don't feel the love of their community and God's infinate wonder. It makes you stop, not just once or twice, but multiple times and thank God that we know his grace. This disease that Natalia has has made us open ourselves up to the world more then we would normally be comfortable with but in return we have been shown more love and support then we ever thought possible.

In August, we were given the news that her tumor was shrinking. The new chemo was working and we began to lower her dose of steriod. She began school and was so excited to be there learning with all of her friends. NOTE: We love Weldon Elementary, it's like wrapping up in your most comfy blanket when you visit. Natalia truely feels like she has a second home there. During her third week of school, she hit zero steriods for 3 days and we had to go to the ER. She was sleeping all day and had no strength at all. She got an IV dose of steriod and we began our latest chapter in the battle. Natalia's been having trouble with hydrocephelus or "water on the brain". She is now afraid to go to school. She spends a day or two at school and then goes to the ER because the balance between the steriods she takes to keep the swelling down and the hydrocephelus shifts. We have now undergone 3 CT scans and an MRI in the past month. First the really good news...the tumor has shrunk more since our last MRI at the end of August. The bad news...the hydrocephelus has gotten progressively worse. She may need to have a shunt put in to drain the fluid into her tummy. The Nuerosurgeon wants her to have a spinal tap on the 21st to see the amount of actual pressure her brain is under and to drain some of the fluid out to give her some temporary relief. He has looked over all her CTs and MRIs and this is the final step before he makes the decision to operate.
Hopefully soon, she will start Home/Hospital school. This should keep her mind busy. That is the only thing that hasn't been affected and she is getting bored. Our pediatrician is recommending at home physical therapy to get her left side into the game. The left side has quite a bit of strength but the tumor casues her to forget to use it. She also has a urinary track infection and a cold...life is not the greatest right now. On the 22nd she will have an ultrasound to check if her bladder is fully emptying. Our pediatrician is treating the cold aggressively due to her tumor. We are to keep her in and away from other kids until this passes. Another plug for JuicePlus+...her pediatrician was amazed by the fact that her blood has remained rock steady through everything. She chews 6-8 sweet tart like chewables a day and loves them. They are now like candy for both girls...God forbid I forget to sit their "fruit & veggie" next to their breakfast in the morning.
But through it all she has been awesome. She has a smile for everyone and a great attitude.

Much love to you all,
Roni

Feeling Better

Hey there,

Well they moved Natalia up to 6mgs of dexamethasone a day from 4mgs and it is helping a lot. It is so much easier now that she is doing better to tell how different the hydrocephalus effected her this time compared to back at the end of June. Back in June when they were bringing her down off the steroid she only made it to 2mgs a day before she could not swallow, had difficulty with her thoughts, could hardly walk and was one constant tremor. She had to be hospitalized for a week before she began to improve even a little bit. This time she was off the steroids for 3 days before the hydrocephalus was bad enough that we had to take her to the ER. She was boosted to 4mgs a day for 5 days and because she wasn't gaining strength in her legs we have been on 6mgs for the past 5 days. She is doing much better but not up to school yet. Monday she will do her labs at Valley Children's and then we're all leaving in the early hours of Tuesday for San Francisco for a CT scan at 9am and clinic at 11:30am. From this meeting with Dr Banerjee we should have another game planning for the reduction of steroids. It is Natalia's wish that Sophia go with her. Sophia keeps Natalia's mind off the treatment and makes her laugh like no one else can.

Those of us who know Sophia the best, understand that although she has a will of solid steel and the total ability to do the opposite of what you want, she will do everything in her considerable power to make her loved ones feel better. She has the instinct to know when you're feeling down or feeling sick and will do all she can and some stuff she shouldn't to make everything right in your world. Right now she is playing catch with her sister trying to keep her occupied because Natalia is bored with siting around.

Love to you all,
Roni

The Roller Coaster

Sorry, I haven't written in a while. It is hard to know what to say sometimes. Natalia is experiencing a setback right now. She was coming off the steroid 1 mg every 5 days and all seemed to be going well until she hit 1 mg a day. About the 3rd day in the cycle she began to get really tired and then when she went off the steriod she began to sleep the majority of the day. She did her chemo and clinic on this past Tuesday and they discovered she had a urinary track infection. By Wednesday she still was not doing any better, in fact, now she was so weak she could barely walk. We called up to UCSF and they told us to take her to the emergency room to get electrolytes & steriods by IV and get a CT scan. The CT scan showed she had hydrocephalus or "water on the brain". This happened the last time she was coming down on her steriod dose and she ended up in the hospital for a week then. We brought her home late Wednesday night. She is now back on the steriod at 4mg a day and we have seen a slight improvement. UCSF should get the scan today and contact us about what we should do but still...everything was looking up then we hit the down of the rollercoaster ride, it rather sucks. Her spirits were so high about going to school and starting to do things on her own steam again now this.

Love to you all,
Roni

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

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

A Step Back part 2

Yes, she scared us pretty bad. She had slowly been retreating into herself for the past week. She had been drooling and swallowing was getting progresively harder. She was also extremely weak. She took a couple of nose dives to the carpet while she was at home last weekend. All things we had been told to expect from the radiation/chemo and decrease in steriod. But Thursday was just too much. When she could not even swallow soft food, something had to be done. Edgar called me Thursday afternoon from Dr Banerjee's office. They were ordering another CT scan to be done. He called me back later in the afternoon to let em know that the CT scan showed her ventricals (the areas that hold the liquid in the brain) were swollen. They didn't know if was because of...the decrease of steriods...the radiation...or the worst senario, the tumor had grown and was blocking drainage. An MRI was needed to find out the cause. The quickest way to do this would be to admitt Natalia to the hospital. They increased her dose of dexamethasone to 6mg and began an iv to pump her full of fluid. I finally got fully calm enough to drive to San Francisco Friday morning.

Natalia's increased dose of steriod began to show its effect by Friday afternoon. After not having any food or drink all day we got word that the MRI would not be happening. They could not get an anestesiologist. She was hungry and was able to eat AND swallow dinner. By Saturday she was doing a lot better. The resident nuerosurgeon, and Dr Gupta's assistant, said they would probably not do the shunt becasue she was responding so well to the increase of steriod. We also got a better explaination of how radiation treatment works...the results do not show right away, it may take days, weeks, months afterward to see the full results of the treatmetns she is currently undergoing. At least now, I feel Sophia and I can go home on Sunday and Natalia will be ok.

Love to you all,
Roni

A Step Back

Hello All,
Edgar called me on Thursday morning to say Natalia was not swallowing very well. He was very concerned about bringing her home on Friday for the weekend if she was having difficultly. When she awoke from her midmorning nap she still had food in her mouth and could not make her tongue move to swallow it. He got her in to see Dr Banerjee, who, ordered another CT scan. Natalia's ventricals were swollen. Her brain was not properly draining fluid. The decision was made to get her an MRI asap. The quickest way to do this was to admit her to the hospital. They got her into a room on the 6th floor by 9pm on Thursday night. They also increased her dose of steriod. Sophia and I took off 1st thing Friday morning to be here for her. Edgar didn't tell her we were coming so she was very surprised and happy when we walked in. We spent the day waiting to see if they could squeeze her in for the MRI. Dr Banerjee and Dr Haas-Kogen were both talking about inserting a shunt into her brain for drainage but the nuerological team wanted the MRI done. Finally at 4pm we were told that it wasn't going to happen. By then Natalia's increased dose of steriod was beginning to kick in. She was better able to swallow. We were then moved up to the 7th floor....to the same room she was in after her biopsy. The MRI is now scheduled for Monday 6/30/08. They are keeping her in the hospital for observation until then. Sophia and I will head home to Fresno on Sunday afternoon.

Talk about curve balls. She was 3 treatments away from being done with radiation and Thursday night was her last dose of chemo. Then this...She had been showing more symptoms during the past week and a half but her dose of steriod was down to only 2mg a day. We started all this at 12mg a day. She scared us all pretty bad.

Here we go...

As you might be able to tell I like to wait until I see Natalia for myself before I do a post. She had a good weekend at home. The water was warm enough for her to go swimming on Saturday. She loves all forms of water, whether it is the pool, river, lake or her favorite the ocean. She spent the first five months of her existence in my tummy onboard the Ocean Princess. She has always been drawn to the ocean. When she first started to show what we now know were symptoms of the tumor, she insisted that we had to go to Monterey so she could walk on the beach. When we finally learned that it was a stage 3 anaplistic astrocytoma we took the girls to Monterey before coming home. Natalia and Sophia walked along the beach and Natalia was straight into the water before we could stop her.

I am remembering all this because a friend asked me tonight if I really thought she was making progress in her treatments. Your views change quiet a bit when your child has a lifethreatening illness. Every moment become precious and even the smallest bit of progress is huge. After her biopsy, they lowered her steriod dosage and her syptoms became extremely pronounced. Edgar and I became very worried and Thanks to God they started her treatments. The symptoms began to lessen and those who know her well could begin to see the differences. Now they have once again lowered the dose of steriod because they need to see how the radiation and chemo are doing. But now the difference is she is fighting it more. She has her laugh back. She wants to be involved in things rather then just be content to watch the world go by. She walks on her own without having to hold tight to your hand. Her face shows how she feels once again and those who know her yes the sarcasm that is part of her comes through in those expressions. When Sophia jumps on her she pushes back. These otherwise small steps are giangantic to us.

It was warm in San Francisco today so Edgar and Natalia went to the beach after treatment. What did she do...walk straight into the water, with no one holding her hand, laughing all the way!

Love to you all,

Roni

Monday's Doctors visits

Edgar and Natalia spent the afternoon seeing Dr Haas-Kogen for radiation and discussing how Natalia was progressing. So far they are only saying that the pictures they take every Monday look good. But that could mean anything. We are encourged by the fact that she wanted to take Natalia down to only one dose of dexamethasone a day. Edgar said no to that. Natalia is just beginning to feel confident walking and doing things for herself again. If the steriod is cut now then maybe the symptoms could become more pronounced and she would lose the ground she has gained. So they will wait another week before cutting it to once a day. They are very good at including the parents in the care program.

Next up was Dr Banerjee. We have not seen her since the first week of radiation. She also thought Natalia was doing well. She has ordered a CT scan for the 19th to see if the tumor might be effecting other areas. This is good for us because we might get a better feel on how the radiation and chemo is working. Then she went up to do her regular Monday blood work. Nurse Lizzie called Edgar and told him the results of the blood work looked "wonderful".

They have all received their Natalia's Friends bracelets and wear them with pride. I am beginning to see them all around town. It's hard to miss that bright lime green. I feel a gaint hug every time I see one. Thanks so much Weldon Elementary Parents Club you made that happen.

Love to you all and remember God is there waiting to help you...you just need to take the first step and ask for it.

Love, Roni

Small Steps, Big Results

Hello everyone,

Well, this weekend was special for me. When Edgar and Natalia arrived home Friday, she walked to me without anyones help. It was so amazing. She is so much more animated this weekend. She received a visit from her friends Kirsten and Ashley this Saturday and was on cloud nine. It was wonderful to watch her play with the girls and their sisters. She actually took part in the fun. Sunday she spent relaxing. While she is tired tonight, she looks refreshed and ready to head back into the fight.

She is begining to lose her hair. It is coming out in the spots that the radiation is concentrated. The radiation not the chemo is causing it. Luckly her hair is so thick that most of the loss is still covered by other hair.

New Update

Sorry All,
I know it's been a while. I've been trying to get my home computer back up and running. Now here we go. Natalia is now 1/2 way through her 3rd week of radition and chemo. When Edgar and Natalia left last Tuesday for UCSF without me last week I felt like the worst mother in the world. How could I possibly send my baby into medical treatment without me there? I knew Edgar was going to be caring for with everything in him but it didn't make any difference. I know that morning at work was not my best. The look in Sophia's eyes when I picked her up from Pre-school completely reminded me why we were doing it this way. I could tell Sophia hadn't really believed that I was coming to get her and that I was going to UCSF as well. She glowed when she saw me there to get her and bring her back to her own house. That one moment made it all worth it.

When they returned for the weekend Natalia's personality was coming back full force. I could see some improvement in her physical symptoms but her laugh was coming back. This past weekend was special. Friends had arranged for the girls baptism and first communion at Our Lady of Mount Carmel. Father Micheal did a wonderful ceremony that was from the heart. The girls godfathers made us all laugh when it was time to light the candles. Anthony attempted to lift Vince up to reach the candle. I thought Natalia was going to start crying she was laughing so hard.

Edgar and I have both really had our faith tested these past weeks. I think the lessons at Sunday bible study came in handy. During the beginning of Natalia's diagnosis, one of the main themes was to think vertically not horizontally. Your weight is lifted by remembering that God has a plan and will be there to lift you up when you think that you can no longer go on. You do all that you humanly can and let God take care of the rest. Then you take a deep breath and dive back into the fight.

This weeks parting was much easier as we all knew what was in store. Edgar tells me Natalia's physical condition is beginning to improve this week. I know she is talking alot more on the phone. She is also remembering all the words to her favorite songs and singing them to us.

I started the new job as manager this past Monday. The best part is that it is challenging to make sure that Merit is a good home to the 500+ residents that call it home. The worst part is that the former manager is one of my best friends and she will no longer be living next door. Marcy I know you're reading this, you are off to better things because you deserve them, just remember we love you and totally believe in you.

Good Bye for now...now that the computer works again I'll be better at keeping updates.

Love to you all,
Roni

Fresno Family Struggles To Help Sick Daughter

By: Kyra Jenkins

The Fresno Police Department held a silent auction and fundraiser to help a little girl battling cancer, on Sunday.

Natalia Valle-Sandoval is the daughter of Fresno Police Officer Edgar Valle-Sandoval. Doctors recently found an inoperable brain tumor in her and said surgery isn't an option because it's too risky. The family hopes chemotherapy will help her and she is scheduled to start treatment next week in the Bay Area.

Six-year-old Natalia just finished radiation treatment last week and now the family said bills are beginning to pile up.

The Valle-Sandoval family will take her to a San Francisco hospital for a 6-month treatment, a plan that will cost thousands of dollars.

"All the donations will go toward the family; medical and travel expenses for the 6-month treatment plan. They will spend five days in the Bay Area and come home on weekends," said family friend Jeannie Foraker.

Officer Sandoval said he's just grateful for all the help people are offering him. Hundreds of people showed up to the fundraiser at the Elbow Room on Figarden, many people he didn't even know wanted to help him and his family.

"There are so many people I am grateful for that if I spent the whole day calling them, I wouldn't get to all of them. I want to thank every one for their thoughts and prayers, anything that has helped us get through this time," said Sandoval.

The officer is on leave, along with his wife, while caring for his daughter over the following months. Family members and friends have set up a bank account at the Central Valley Community Bank for anyone willing to give donations. The account number is #001521993 and checks can be made out to the Central Valley Community Bank, attention ‘Donation for Natalia Valle.'

Friends of the Valle family are planning another fundraiser in the Elbow Room in July.

Special To The BEE

Fresno girl, 6, fights brain tumor

Friends held a $22-a-head benefit Sunday and had raised $3,000 beforehand.

By Jim Guy / The Fresno Bee
05/25/08 21:30:07

Fresno police officer Edgar Valle-Sandoval and his family are facing the crisis of having a child with inoperable brain cancer. But they don't feel as though they are facing it alone.

Sunday, as friends and fellow officers rallied around the family at a benefit at the Elbow Room in Fig Garden Village, Valle-Sandoval wept as he thanked his friends for turning out to a $22-a-head benefit lunch. Before the event began, $3,000 already had been raised.

"I feel like the guy in the Verizon ad who turns around and there are 1,000 people behind him," he said as he fought back tears.

Valle-Sandoval's daughter, Natalia, 6, was diagnosed in early April with a cancerous tumor on her brain stem.

Because of the location of the tumor, surgery is not an option.

So she is undergoing six weeks of radiation and chemotherapy at UCSF Medical Center in San Francisco.

That has put a hold on everything in the family's life as both Edgar Valle-Sandoval and his wife, Roni, take time off from work to be with Natalia for the treatment. Monday through Friday, the family stays in San Francisco with Natalia and their other daughter, Sophia, 4. Expenses are adding up, too: the daily parking fee alone is $22.

The family leaves Fresno on Monday morning, and Natalia goes straight into radiation treatment. After an afternoon rest, she then has a chemotherapy session. Valle-Sandoval says it's a very tiring day for his daughter. He and his wife do their best to explain what is going on to Natalia.

"She knows something is wrong and that we are going to the hospital for a reason," he said. "I don't think she gets the magnitude of what it is, however. We try to talk to her as much as possible. The doctors at UCSF have just been incredible in explaining to Natalia what is going on at her level. They've been very considerate to us, and to me, that makes the situation a little bit better."

Family friend Jeannine Foraker said she already has seen some improvement in Natalia's condition and was heartened that so far, the treatments have not made Natalia ill, which can be a side effect.

Valle-Sandoval said it means a lot to the family that they can get back to Fresno after the weekly sessions.

"Every week, we come here to recharge our batteries," he said. "I'm definitely overwhelmed," he said of the support he has received from Fresno.

"I'm very humbled by it. I want to express to everyone our deepest gratitude. Even if I spent a whole day on the phone, I would not be able to get to everyone."

Police officer Pat Dalbec, who knew Valle-Sandoval when he was a manager at the Elbow Room and then became his training officer when Valle-Sandoval joined the department, was not surprised at the support for the family.

"This is a community that cares about little kids," he said. "He's a very good man and it's a great family."

To help:
A bank account has been set up for Natalia Valle-Sandoval at Central Valley Community Bank in Clovis. Donations may be made to account number 001521993 with a notation in the memo area reading ‘‘Donation for Natalia Valle.’’

The reporter may be reached at jguy@fresnobee.com or (559) 441-6339

Home for the long weekend

Good morning everyone,
Well, Natalia finished her 1st full week of radiation and chemo. She only got sick once. We think it was because she woke up at 4:30am and did not go back to sleep...we give her her anti-nausea meds at 6:30-7am. It was just to long of a time to be awake without help. We got into a good routine this last week. Go for her 9am treatment, get some breakfast, Natalia takes a nap, wakes up refreshed, eat lunch, go for a walk in the park or do other necessary chores, have dinner, take a walk, shower, take chemo, go to bed. Fridays mean time to come home. We have been leaving by 10:30am, so we get home about 2:30pm with stops for lunch and potty.

News on my front. My regional supervisor called yesterday and offered me the manager's position here at Merit. It was with a heavy heart that I told her no. I believed that all my time a effort should be with Natalia right now even though Edgar would be the one taking her to San Francisco for the next 5 weeks. Since the future was unclear, how could I say yes to the promotion. Then when I got off the phone and told Edgar what had taken place he asked just what I was thinking. Was he not the one who had the time off work to spend with Natalia for treatment, did I not make sacrifices when he was making a career change, could I accept anyone else telling me how to run the property that I had helped build up to what it is today and most importantly, was Natalia's illness going to get any better if we did not keep living and moving forward. The answer to all this was life is for the living and if Natalia was not sick I would have jumped at the chance so why let this disease win in any part of our lives. I called Patrece back and told her I wanted the job.

Tomorrow is the fundraiser event at the Elbow Room. At first we were going to leave going up to Natalia. If she didn't fell like it no go but now the Fresno Bee is coming to do a story and this will be our chance to say THANK YOU to all those people we have either never met or hardly see. To say a personal thank you for everyone's support, not just monetary but all the prayers and kindnesses that have fallen upon us.

Much love to you all,
Roni

Small Steps

Good Evening all,
Sorry it has been a few days. As they say, no news is good news. Radiation and Chemo have been going well so far. We walk up to UCSF and catch the shuttle bus over to Mt Zion for Natalia's radiation. Then we catch the shuttle back and walk back to Family House. Natalia will then take an hour long nap followed by lunch and a walk somewhere. She takes her chemo just before falling asleep by 7:30pm each night. So far she hasn't gotten sick from any of this. Praise to the Lord that this continues. While her symptoms have not gotten any worse we are beginning to see little steps...she now reaches for things and tries to do more with her hands. She is also becoming stubborn again. "No, I'm done." Is her current call of battle.

We attended a family circle support group that Family House organizes every week. It was good to talk specifically about what we are going through and feeling with other parents in the same situation. We were reminded to live in the minute not tomorrow. This is something kids do all the time and adults need to be reminded that happy is right now, not when you get something or finish another. We also cemented in ourselves that while we accept the diagnosis we do not accept the prognosis. The fight will go on no matter how long it takes.

Yes, we are setting up a blog web page with www.caringbridge.org but all this is still to raw and I'm not sure what to say. I'll probably be working on that next week when I can't sleep. I run out of time off for work this next week so back to work I go. I am filling out my paperwork for the Family Leave Medical Act but it is up to each employer whether the employee is to be paid. If nothing else this will allow me 12 weeks additional time should I need it paid or not. It should also protect me from losing my job because of time I need off. Edgar and Natalia will be returning to UCSF without me starting the 26th. I will be home with Sophia keeping the home fires burning.

Note: the picture is of Natalia's radiation treatment room. The lady with short hair is Pat and the other is Carolyn. Pat is awesome and always has a smiling face at the start of our day.

Bye for now...Love to you all,
Roni

First Day

Morning everyone,
Sorry, I didn't write yesterday, but we all hit the physically exhausted wall. Natalia was incredible yesterday. She walked right in got onto the table they put her mask on and locked it to the table. Sophia gave her Patches the Cat AKA Kitty Canoli to hold while it was going on and then she held still for 15 minutes while the machine went all around her. Amazing for a 6 year old. We then went up to the main UCSF campus and got her chemo meds. She took those just before going to sleep last night 8:30. And so far at 5:30am she is still asleep. They also are having her take antinausea meds 2 times a day.

Of course, she is probably still asleep because we had her walk a ton yesterday afternoon. We came back from getting her meds, fed her lunch then made her take a nap. After that, Family House is right next to Golden Gate Park, we walked to the Japanese Gardens, all around them and then through the Botanical Gardens. She prefered the Botanical because there were turtles in the pond. We are trying to get as much good food into as we can, good thing she likes fruit and veg. As well as, keep her as physically fit as possible. We head home today...yeah!

Love to you all,
Roni

Starting Thursday

Hey everyone,
Yes, I said starting Thursday. We got to our appointment this afternoon expecting them to take pics and plot courses and things, then we may have another appointment Thursday to finish things up...but oh no...Treatment starts tomorrow. God truely understands all you can do and takes that into his plan. When the doctors said they were ready to go ahead last week they meant business. Natalia is handling it like the little champ she is. She just goes with them hops on the table and looks at the starlights they have above the machine. Very cool by the way. She can listen to any CD that she wants during the radiation to help her relax and chill. The sessions should last about 15 minutes.

We got her an ipod to help with the waiting room monotony. She was jazzed today to watch Hannah Montana while she had to wait her turn. We got the headphone splitter so there will be no "it's my turn" with the sisters. We feel very positive now that all Natalia wanted to bring on this trip was her sister. Now Sophia can see just a little of what her sister will be going through on a daily basis.

We get to try out the shuttle service tomorrow. We will walk up to UCSF and then catch the shuttle to the Mt Zion campus for Natalia's treatments. This way we get our exercise and we don't have to search for parking. The shuttle service is free and runs every 20 minutes. We have to wait and see if we can get our butts in gear to catch to 8:20 shuttle for our 9am appointment.

Principal Lonzono(I know I messed that up please excuse me I had to deal with sisters in the back of a small car all afternoon) called this morning to say they were in the process of starting "Natalia's Friends" bracelets. Rubber ones like the Lance Armstrong "Be Strong" bracelets. That is way too cool. Just to know she has that much support behind her and now it will be not just in love and hugs but is a visable sign. I'll probably cry everytime I see one.

Note...Mary tell Ann thank you so much we got it Monday and began the prayer that afternoon.

Much love to you all,
Roni

Where we are heading

Good Morning everyone,
Well what a week! I must admit Edgar and I weren't in the best of shape after hearing the words cancer and won't go away. But we are back on track and ready to kick serious butt. We were all eady to leave San Fran on Wednesday afternoon when we got a call to tell us they had an appointment for us with the Radio-Oncologist for Thursday at 12pm. Wow! So much for maybe next week. When we arrived the Tumor Board was just going into their meeting and we had to do all of Natalia's vitals and Dr...Scott...examed Natalia. When the Tumor Board let out within the hour Dr Haas-Kogen...Daphne...said it was the decision of the board to go ahead with treatment rather then wait until early June and that was only if she got a spot on the medical trail. So we did some of the preliminary work for radiation and we will come back next Wednesday to finish the prilim stuff then begin treatment on the 19th. We then went back to Dr Banerjee loaded up with Orange Chicken from Panda Express, Natalia's favorite...Note while waiting for her CT scan Natalia & Sophia kept asking the doctors who would be bringing her lunch as she was very hungury Scott was so taken with their pitiful cries of hunger he found them m&ms and jelly bellies. Anyway back at Dr Banerjee's we got all the blood work done to start chemo and for homone checks becuase the radiation might affect those.

While this type of cancer will not go away it can be treated and contained and that's what we are going to do. They can treat this for many years to come and in the cancer game were new things are discovered all the time that is great news.

Much love to you all,
Roni

Appointment Set

Hey all,
We got a call as we were finishing up the last of the cleaning up here at Family House. We were set to head out when we got the call from Fabienne, Dr Banerjee's nurse practition. We have an appointment tomorrow at noon with the radio-oncologist. So at least we are moving ahead with some stages of treatment. Dr Banerjee will once again be bringing Natalia's case before the Tumor Board so more minds can see and suggest treatment options.

The time for tears is past. The time to get it in gear and start to kick butt is here. Every moment is a wonderful memory and miracles do happen. So chins up everyone, no sad faces.

Love to you all,
Roni