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.
Wednesday, December 31, 2008
Tuesday, December 30, 2008
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.
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.
Monday, December 29, 2008
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
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
Sunday, December 28, 2008
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
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
Wednesday, December 24, 2008
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
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
Sunday, December 21, 2008
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
Saturday, December 20, 2008
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
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
Wednesday, December 17, 2008
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
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
Saturday, December 13, 2008
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
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