Port Removed

Well, so much for our hope that the port would help Natalia get poked less...it got her another surgery. Edgar and the evening nurse, Steve, were looking at Natalia's incision sites last night and thought there was some oozing from the insersion point at her neck...nope it was the tube coming out. Rather then take a chance and push it back in the decision was made to remove the port, then the arguement as to what to do next began. She was supposed to have the surgery at 9am but it didn't take place until 2pm. Good for Pia and I because it allowed us time to get up here. They were going to put in a picket line but the final decision was not to create any more incisions that she would need to heal...just let her heal these ones first. She is being pumped full of the antibiotics and the incision on her tummy looks a bit better then when I left on Tuesday night. Still do not know when they are going to release her but our current plan is for Edgar and Sophia to head back to Fresno tomorrow afternoon. The Make A Wish Gala under the Stars is tomorrow and Edgar has been asked to speak before the auction. Anything that can help them make one more dollar for a child in need is a priority in our lives. We were all supposed to go and the girls got their new beautiful dresses for the occasion...that earned another "this sucks" from Natalia. Good night for now, I have hospital duty tonight so that Edgar can finally get some solid sleep. Thank God, Family House had room for us at the 10th Street house. It is so comforting to know that when we really need it they pull through to get us a place to sleep and shower. The staff is so incredible, it is hard to know just what we would do without them. Just taking to them helps to lift some of the burden of having a child in the hospital.

Much love to you all,
Roni

More Tests Return Delayed

Well, in Natalia's own words, "This sucks!" She is not at all happy to be in the hospital and she is not feeling to good now on top of it. She is mad and sad. The doctors have now told Edgar that it will be a few more days because they need to do more testing to see how far the infection has spread...they even have an infectious diseases doctor checking her out. So much for coming home tomorrow. But at least she is up at UCSF...if she had been home they would have had to medivac her back up there. Even the incision on her neck is now oozing...they are pumping her full antibiotics and now we wait...this sucks! I am going to disinfect the entire house now...I can't fix her but I can fix the house...don't think it was anything here that caused the infection but I can make sure it is the safest environment for her to come home to.

Much love to you all,
Roni

Back in the Hospital

What a day...It's just past midnight and I just got home. Natalia had an MRI today...the results were>>>good, the tumor has stayed the same. No shrinking but no growth either. However, the incisions she had for both her shunt (on her tummy) and her port-a-cath have become infected. So it was decided the best thing to do was admit her to the hospital to give her antibiotics and see what can be done for delicate skin. It is the steriods she has been taking for so long that have caused this to happen. Even the area of her tummy shunt incision that had been closing is now back opened. They are doing all kinds of tests to make sure the infection did not spread anywhere else in her body. We made the decision that since we weren't prepared for this to happen that I would head home to be with Sophia and Edgar would stay with Natalia. We are going to see if we can rent a car and have it dropped off at the hospital on Thursday so they can get home without me driving back up there to get them. Now it is off to bed because I know think that I have wound down enough to pass out.

Much love to you all,
Roni

Happy Birthday Natalia!

Hey all, I will write more about this incredible day later but right now I am wiped out & I wanted to post some photos of the day...Huge and special THANK YOUS go out to Conner for filming events with the Sophia Cam and to Savannah & Karissa for helping Natalia with the presents.

A Good Day

Yesterday was a VERY good day. The morning started off awesome...my parents' next door neighbors, Cecil and Charlotte, lent us a small adult wheelchair while we wait for Natalia's. Natalia is in love. She and Papa went out and about running morning errands. She then came to the clubhouse for her school lessons with Mrs Hansen because Papa had to take Sophia to play rehersal. The 25 yards from our front door to the clubhouse was like travel across the city for her. It was exciting to do something different and with the wheelchair she was able to sit at a table to do her lesson rather then use her lapdesk on the couch. After her school, we all went to pick up Pia then off to Build-A-Bear for a Make-A-Wish send off party. Natalia's godmother Marcy's company made a large donation to Central Valley Make A Wish in Natalia's name...so Natalia was able to help sponsor Kassie's wish vacation for a Disney Cruise. The whole party was a blast to watch.

These wishes are so important to kids in medical crisis. You can feel the strain that they are under and know that these wishes help relive that pressure for long enough that they are able to take up the battle with renewed hope and vigor. Just to have that breathing space that that that......For some kids it is a trip, for some it is a laptop, for others it is to meet John Elway (yes old school Bronco fan here). For a moment just remember being a child...if you could wish for anything what would it be? That's is the big question that wish grantors ask and then try to grant. What this organization does is truely amazing.

Two more days, then Natalia turns 7. I think I am going to have it down to the seconds by the time Saturday arrives. It is almost as bad as the Christmas count down.

Much love to you all,
Roni

Passage of Time

Normally, with the 24th fast approaching, I would be thinking OMG my baby is going to be 7 years old. Where did the time go? When did I get so old? I would be looking forward to the next mile stones of youth like school dances, soccer games or dance recitals. This year I'm thinking...Thank God, she made it to seven. I am looking forward to the next mile stones of physical therapy, wheelchair mobility and port use. Natalia is like any kid. She is counting down the days until her birthday. There are only six more to go. She wants a small party with family at the Elbow Room and coloring books...Strange for a 7 year old you might think but at 5 she wanted dinner at Red Lobster with Grandma & Grandpa and lip gloss. Edgar and I have a good feeling about Natalia's seventh year. No matter what it brings it will be met with all we have and all we can give. Every memory will be cherished and loved.

As usual in the week before her sister's birthday, Sophia is testing her boundaries...I haven't decided if she will make it through the week without being tied and gagged. Actually, it is just me that she tests. She gives me THAT look before she does something she is not supposed to...looks right at me then does it anyway. Then before, during and after punishment she says she loves me...she is making sure that no matter what she does she will not lose my love. Stinkpot!

Much love to you all,
Roni

Feeling Better

Monday it was back to the Family House on 2nd and Irving right across the street from the hospital. This makes it very convenient for us to go back and forth. Sophia and I walked to our favorite Italian restaurant Pasquale's to pick up dinner. It was so beautiful, we only had on light sweaters. Then at 615AM Tuesday,Natalia and I walked across the street and checked in for surgery. Sophia was still asleep and it best for the rest of the world to let her wake up naturally. Natalia likes the hospital because "everyone is so nice to me." The surgery took about 2 hours and then 1 hour in recovery. Then it was up to 7 Long. Our regular floor, great nursing staff and very quiet. She was very sore from the surgery but otherwise pretty well. She has some bruising where they ran the catheter and inserted the port. The only bad thing is her asthma was irritated by the breathing tube so our pediatrician at home has put her on a nebulizer. She was released Wednesday afternoon and of course we sprinted for Fresno.

Huge shout out to our pediatritian, Dr. Cesar Vasquez, of Fresno Childrens Medical Group. He is very proactive with treatments. As our journey has progressed we have learned how wonderful he truely is. The stories many parents of children with brain tumors tell is very different from ours...they had to fight their doctors to get that intial CT Scan to see if anything was wrong with their child's brain, we were sent immediately to Valley Childrens to get one after he did a nuerological exam. When we learned just what type of tumor Natalia had and what they (UCSF) were going to do to treat her, Dr. Vasquez called St. Judes to see if they would offer an alternate treatment. Instead of increasing puffs and seeing if that helps stop the weezing and coughing, gave her a nuebilizer(like an air pump that turns liquid medicine into vapor with a mask attached) to get more medicine into her quicker and controls her asthma for several hours.

More later...time for her medicine...

Much love,
Roni

Faith

I came to a realization yesterday at the car wash...I give a incredible amount testimony to the Grace and Power of God. Before Natalia's diagnosis I was hard pressed to give testimony. I just don't like talking to strangers. And I really don't like talking about something very personal to me but over the past nine months that is exactly what I have been doing. Kind of like Jonah, the faith and the desire was there but I needed to be drug kicking and screaming to spread my faith. I spoke to several women about God at the Red Carpet yesterday. Sophia was talking to another little girl and let out that her sister was home sick with cancer. The "oh, I'm so sorries" started and then we all began to talk about miracles and the power of prayer. We stood in a circle and said prayer there in front of the popcorn cart and it was wonderful. I have met so many believers in our journey but I think we effect the non-believers more than anything. Our faith has been tested, but it is only growing stronger...the message, everyday is a miracle and it is to be treasured. People always say to us miracles do happen...our answer is everyday is that miracle. You can always find some joy in every single day. It can be as simple as a beautiful flower out your front door or as big as getting that job you wanted. For us it is the fact that no matter what has gone on medically, Natalia is home with us. The girls laugh and play, they fight like only sisters can, the smile that Edgar and I share...these are miracles that happen all the time right before our eyes.

I get angry when other parents tell me how strong we are for not curling up in a ball and crying...not going on and living life to it's fullest. The sheer frustration wells up at not being able to yell..."wake up" you are good parents put your faith in God and know that no matter what happens He is with you. This blog has become my outlet because with Natalia not being able to go out and about we are chained to the house most of the time. Adult conversation happens at work and that is definitely not the place to let out feelings. We have met some incredible people on this journey and you need to know how wonderful you are. I can not remember the names of many of these people but what I do remember is faces and deeds that have helped to lift our burden. One small act of kindness that might seem like nothing to them meant the world to us. It lets me know that in everyone there is the capacity to do wondrous things. I just want you all to know that while I do wish any of you to have to go through what we are, you are all capable of it. It is amazing what mountains can move with God's help. You just have to have faith...in yourself...in others...and most important in God.

We are leaving for San Francisco today. Yeah...it is 20 degrees warmer there then here in Fresno. Usually, it is 20 degrees cooler. Tomorrow morning is Natalia's surgery to put in her permanent port. Miracle...3 months ago they wouldn't consider it because they didn't think she would be here. Well, little miss is tired of getting poked twice every two weeks for blood work and then then chemo. It is time for some relief.

Much love to you all,
Roni

What a Week

I had to have the talk this week...Natalia is not the center of the universe and her sister needs a life too.

A four year old should not have to know that the world does not completely revolve around them and they are not the only focus of their family's attention. Sophia has had to learn this far to early. Most kids are in kindergarten when this realization begins and it is wonderful to watch their eyes open to the rest of the world. Natalia became a nurturer and was game to try everything. Because of her sister's illness, Pia has spent the past year becoming much older then most 4 year olds. She has become the little helper because it makes her invaluable to her family. The most mundane things like cooking dinner become much more interesting because Edgar and I need to think of ways for Pia to help without her getting burned or chopped up...she has become the official "pass the spices" girl...she has become the "duster" of the house(this is actually good as I hate dusting). Swimming lessons started back up this week and Pia almost didn't go because it was "too long". Pre-school is "too long". "Too long", we asked..."too long away from sissy" was the answer. Sissy needed her to keep her company and play with. Pia went Monday missed Tuesday & Wednesday went 1/2 day Thursday and missed Friday. She actually had a dermatologist appt on Friday, so I guess that doesn't count. But I had the talk with Talia on Thursday morning about her sister needed a life away from her. Pia needs her own friends and time to be a little sister. She needs Natalia to be proud of the things she is doing not be made to feel guilty about spending time away from her.

Soooo...in a move to give Sophia more time to be Pia...she is now part of The Stage Door Children's Theatre production of The Chocolate Factory. Yes, Paparazzi Pia(as she has been called) is now an actress. She is Ompaloompa #10, has 1 line and gets to sing the ompaloompa song in the show. Wednesday and Thursday afternoons are rehearsals and she has made lots of new friends, the "bestest" being another 4 year old Sophia...they think it's a hoot to call for each other across the room. The performance will be on Feb 28th and March 1st at the Fresno Auditorium Theatre. I have to sell 7 tickets(parent requirement). I think I can do it...LOL.

Natalia and I went to pick her up Thursday night and then to visit Talia's godmother. She was happy to get out and about but is still very scared about moving. Her balance is her biggest challenge. She is so much better then before the shunt but she does not see it all the time. As long as she is sitting down, she feels she can conquer a lot but the minute she stands the world tilts. She also knows her limits and lets you know when she has reached them. It is like flipping a light switch. One moment she is laughing and enjoying herself the next it's "I'm done let's go home now" and there is no arguing. You can see all energy has left her little body. She is excited about getting the port on Tuesday. She like the hospital as long as she knows it is only short term. She knows she is only spending the night and then going home.

Much love to you all,
Roni

Fiesty & Fun

That says it all about the Valle sisters right now. Natalia has gotten very spoiled by having her sister around all the time. First Pia was sick and out of pre-school for a week then when Talia got sick Pia was at her side constantly, even spending 1 night in the hospital with her. Sophia started back to school last week and by Wednesday was so guilt ridden about leaving her sister alone at home she didn't go on Friday.

Talia has been perfecting her one liners lately and truly keeping us in stitches. She is trying to do more with her hands and body while sitting. Standing and walking still scare her a lot. The good news to us is that other then the headaches and nausea we don't see a difference between the steroid she is on now and when she tapered off of it. We talked to her about getting a wheelchair this afternoon. We have the all-terrain stroller but it is hard to get it into restaurants and through stores and other enclosed spaces that we may want to go. The stroller was perfect when she was still walking a little and we only needed it to go long distances but now there is no way we would be able to get her to walk in a crowd. It is hard enough to get her to walk with assistance through the house. She is also getting that puffy steroid look again. It has to be water retention because her appetite has tapered down. We are going to talk to our nurse-advocate about getting a chair on Monday. (Note:we love Carolyn, she has been with us since April. She has wonderful ideas on things to try with Natalia and we feel like we can ask her anything and if she doesn't know the answer she will find out for us.)

Pia...Pia...Pia...I want to bottle her energy and take huge sips throughout the day. We have discovered the key to channeling all that energy in a way that we don't feel the need to strangle her. Sophia loves to help. Give her any task to do and it is done with all her attention and drive. When she cleans her room and the playroom, there are complete stories going on with all the toys...and it looks incredible. Need something dusted...need the kitchen swept...need something out of the fridge. Her current goals in life (in order) are to be a skateboarder(she does not even own one) a hip hop dancer, a singer and an apartment manager like Mama. She has her blue moments but she has so much happiness flowing through her that they don't last for long.

Natalia's birthday is coming up on the 24th. She has decided that she wants to go to the Elbow Room for dinner. She loves their food and has always been made to feel at home there. She also wants a Tinkerbell chocolate ice cream cake. We are just so happy she has made it to 7 years old that she can do whatever she wants for her birthday it is going to be incredible.

Much love to you all,
Roni

Prayers For Mason

Hey all, I am asking all of you to pray for baby Mason. He is 3 months old and having heart surgery at UCSF on Monday the 5th. It's a very complicated surgery and will take a long time to perform. Give the surgeons and nurses the endurance and focus needed for the operation and his family the strength to carry on through not only the surgery but Mason's recovery.

Much love to you all,
Roni

Resolutions

#1...make Natalia do more herself. We have been bad about this. Let's face it, she can put on her own chapstick, she can do more to get dressed and undressed, etc... We do too much for her and it is not doing her any good. We need to back off, buck up and make her try.

#2...carve out more Sophia time. While she does not like to be apart from her sister for long, Pia needs more one on one attention. She needs her own I'm special time too. We have been trying to do this it just gets very hard when Talia isn't doing well.

#3...find another stress reliever besides food. Yes, my butt is getting big. If any one has ideas (yes I know exercise going to try to get that in too) please let me know in the comments.

#4...get out of the house more with Natalia. She needs to have more contact with the outside world. We have been keeping close to home because A)she didn't want to move much and gets tired easily B) we didn't want her around people during cold season and last but not least C)it's hard for just one parent to move a 80lb child that fears getting in and out of the car. Edgar and I have different days off. This mostly works in our favor because we only need someone to stay a few hours with Natalia on Mondays and Fridays...sorry it is now 2009 and the matrix has changed...Thursdays and Fridays. ANY...and I do mean ANY ideas on fun things to do in the Fresno area please let us know in the comments.

I think these are reasonable and achievable goals.

Happy New Year Everyone! Much love to you all,
Roni