To say she was glowing yesterday when she returned from her morning school field trip performances would be putting it mildly. Pia loved performing in front of an audience that large...watch out today when it is for the open public. On the way to the theatre yesterday I asked her what she wanted to do next...more plays, soccer, softball, cheerleading, dance...No Karate. Okay, here we go! This is probably one of the best choices she could make...no I am not thinking beating the tar out of something to make her feel better, I am thinking the descipline of mind and body that a good instructor will teach. I am thinking that the focus needed to learn a martial art will help keep the will of iron in check. Yes, I know that she will feel Natalia's loss in ways that we can not even imagine and I worry more about her then any of us. Natalia has always been Pia's anchor. Whenever Pia is in trouble it has been to Natalia she goes for help...to a smaller degree lately but still she looks to her sister to intervene on her behalf...okay, I must admit that a lot of the time it has been because Natalia was the general her told her to do some of the things in the first place. Whenever Pia had success she turned to sissy first to share it. They are peas and carrots and...
We met with Hind's Hospice yesterday and gained some comfort. They will help us control Natalia's pain and show us how to best care for her. I am going to continue to work...it is only 50 feet from our front door...far enough for Edgar and I to be out of each others hair close enough that I can be home in an instant. If I stayed home with Edgar to help care for Natalia 24 hours a day, we would not be good. We talked it over last night and in order for us to be at our best we are going to continue in the way that has gotten us through so far. I will get up early with the girls and handle them until I head to work. Then Edgar will get a break when I take my lunch...I'm going to go in earlier so that I can take a longer lunch and he can hit the gym hard during that time. When work is done it will be my time at the gym then I am on kid duty for the rest of the night...if it is not broken don't fix it just tweak it.
Much love to you all,
Roni
Saturday, February 28, 2009
Sad News
The results of Natalia's MRI were what we were expecting but hoping not to hear. The tumor is growing once again. We knew we would be bringing home our girl but Dr Banerjee wanted to be sure so she asked Natalia what she wanted most in the world, her answer...Sophia. You all knew we had made the decision not to put her through any more but still hearing the words "a few to several weeks" was extremely hard. Hinds Hospice is coming today to help us care for her during the last of her time on earth. She has been slowly slipping away from us since Christmas and now we will do the best we can to make her comfortable and happy. Edgar is taking off work to care for her and I will be working on and off as I can. Today is a day to recharge the batteries and try to get a hold on emotions that are all over the place. I'm at peace with losing her one minute and crying and thinking about time the next. As Edgar says, we must remember and smile at the miracle she is and try to forget the pain we are experiencing now. Those of you that would like to see her please stop by, she loves to see people. We are going to Monterey next weekend to spend time on the beach and in the ocean...cold I know but it is her favorite place. This weekend is all about Sophia. Her show is going on and it is her moment in the spotlight. It has been about Natalia for the past year and Pia finally gets her own gig. She deserves that and unfortunately she is...she is...The peas and carrot team is losing the peas.
Natalia was meant for more from the beginning and now the Lord is calling her for higher duty. We have to let her go and we will do in the manner in which she lived her life...with grace, strength and beauty.
Much Love to you all,
Roni
Natalia was meant for more from the beginning and now the Lord is calling her for higher duty. We have to let her go and we will do in the manner in which she lived her life...with grace, strength and beauty.
Much Love to you all,
Roni
Tuesday, February 24, 2009
How much is too much?
This is a question Edgar and I have been going over in our minds for the past several days and it came to a head Sunday night. I haven't written much this past month because I don't know what to say. We see things that could be improvement followed by much more that is not. The tumor prevents Natalia from crying, however, she is so much pain at times that she is screaming and crying actual tears. She keeps saying she is sorry for doing this but My God what is she sorry for. It grabs you at the heart and rips you apart. The incisions while doing better are still not healed all the way and the largest, and our worst problem, has been there since the end of October. She is now tired most of the time. She will be awake for an hour or 45 minutes and then be so exhausted she can not keep her eyes open. We did family dinner night out on Sunday. We all went to Japanese Kitchen and did the girls first tepenyaki table. We got there at 5pm and by 5:30 she was sound asleep in her wheelchair. Nothing we could do or say could wake her up. Edgar brought her home to bed. Neither of us could sleep last night...and as you can see from the time of this post I'm not sleeping tonight either. We talked about everything thing that had happened and what we saw the future as being. We talked about whether putting her through any other procedures would be more for her benefit or ours to keep her with us. We made the decision together that we were not going to put her little body through more...she has fought with everything in her and we will not bring her more pain. The shunt was put in to help her get off steroids...she is still on them and every time we try to come off she is in worse shape. The port was put in to help make blood draws and chemo easier and more pain free for her...infection and a week in the hospital to have it removed. Now she is on tons of antibiotics and other meds to help her heal and she is still on the decline.
We took her to Children's Hospital yesterday for a CAT scan because she is so tired...usually a symptom that the swelling in her brain is increasing. Yesterday morning was definitely interesting...we called UCSF first thing in the morning Monday when Natalia was bone tired after only having been awake 1 hour...the nurse that answered had the nerve to ask if "we were worried or worried worried". What the hell? I thought Edgar was going to go through the phone...why would we be calling you if we didn't see a problem with her? She then told us to head to the hospital because the Drs would want a CAT scan. Edgar then let the head USCF nurse practitioner have it when he spoke with her because we had been told to call immediately if we felt she was not doing well and we were being made to feel like our concerns did not matter...needless to say when he called a little while later to speak to Dr Banerjee he was put right through. He explained to her our position...we were not going to put her through any more...no more procedures...no more hospital. Every time it happens she comes out worse. So no medivac to UCSF, we have an appointment for another MRI on Thursday to see what is causing this new tiredness.
I'm making special time for Sophia over the next few days...this was supposed to be her week in the spotlight and we are going to try to keep it that way as much as possible. Her show is this weekend and she has dress rehearsals all week. Mom and Dad are going to keep her Thursday so that she does not miss that last one. She has worked so hard for this play and even through crying last night she made us smile by belting out the Ompalumpa song over and over in shower...poor neighbors.
Much love to you all,
Roni
We took her to Children's Hospital yesterday for a CAT scan because she is so tired...usually a symptom that the swelling in her brain is increasing. Yesterday morning was definitely interesting...we called UCSF first thing in the morning Monday when Natalia was bone tired after only having been awake 1 hour...the nurse that answered had the nerve to ask if "we were worried or worried worried". What the hell? I thought Edgar was going to go through the phone...why would we be calling you if we didn't see a problem with her? She then told us to head to the hospital because the Drs would want a CAT scan. Edgar then let the head USCF nurse practitioner have it when he spoke with her because we had been told to call immediately if we felt she was not doing well and we were being made to feel like our concerns did not matter...needless to say when he called a little while later to speak to Dr Banerjee he was put right through. He explained to her our position...we were not going to put her through any more...no more procedures...no more hospital. Every time it happens she comes out worse. So no medivac to UCSF, we have an appointment for another MRI on Thursday to see what is causing this new tiredness.
I'm making special time for Sophia over the next few days...this was supposed to be her week in the spotlight and we are going to try to keep it that way as much as possible. Her show is this weekend and she has dress rehearsals all week. Mom and Dad are going to keep her Thursday so that she does not miss that last one. She has worked so hard for this play and even through crying last night she made us smile by belting out the Ompalumpa song over and over in shower...poor neighbors.
Much love to you all,
Roni
Saturday, February 21, 2009
The Chocolate Factory
Showtime has arrived...Saturday February 28th at 1pm and 4pm and Sunday March 1st at 1pm and 3:30pm...general admission is $11 at the Fresno Memorial Auditorium located at 2425 Fresno St...that is the Veteran's Memorial building on the corner of Fresno and N St right across from the old water tower. Parking is available across the street by the water tower. The kids will reherse downtown this week and have their first 2 shows on Friday morning for school field trips. Sophia is so excited. She has her line, the song and her dance down pat is is rearing to go.
Natalia...Papa has learned that it is much better to take Momma's car to UCSF because Natalia gets car sick in his...it also does not help to take the Elantra instead of the Yukon on one of the rainiest days of the year. Natalia was green around the gills. But this is the warrior she is...after she threw up the second time at Olive and 99(yes, not even out of town yet) Edgar told her they would cancel the trip and go home. "No, I want to get this over with. Let's go!" It was extremely bad weather both ways and it was after 9pm when they arrived back home (they left at 6:30am with a return home to change clothes) She had her first does of chemo in 2 months. She was up until after midnight and then awake by 6:30am. She didn't nap Wednesday because Edgar had court and I was with the company auditor all day. She won't sleep unless one of us is with her. She slept from 8:30pm to 3am then up and down until 6:30am...then more of the same last night. The good news is the pain is better. She is able to stand for short periods and get comfortable quicker. The incisions are healing well finally and she wants to play again.
Start your prayers for the tapering of steriods because here we go again. It will be at a slower rate but we started to lower the dosage on Thursday...
Much love to you all,
Roni
Natalia...Papa has learned that it is much better to take Momma's car to UCSF because Natalia gets car sick in his...it also does not help to take the Elantra instead of the Yukon on one of the rainiest days of the year. Natalia was green around the gills. But this is the warrior she is...after she threw up the second time at Olive and 99(yes, not even out of town yet) Edgar told her they would cancel the trip and go home. "No, I want to get this over with. Let's go!" It was extremely bad weather both ways and it was after 9pm when they arrived back home (they left at 6:30am with a return home to change clothes) She had her first does of chemo in 2 months. She was up until after midnight and then awake by 6:30am. She didn't nap Wednesday because Edgar had court and I was with the company auditor all day. She won't sleep unless one of us is with her. She slept from 8:30pm to 3am then up and down until 6:30am...then more of the same last night. The good news is the pain is better. She is able to stand for short periods and get comfortable quicker. The incisions are healing well finally and she wants to play again.
Start your prayers for the tapering of steriods because here we go again. It will be at a slower rate but we started to lower the dosage on Thursday...
Much love to you all,
Roni
Saturday, February 14, 2009
Long Time I know
This has been a hard 2 weeks...Natalia has been in a lot of pain and has lost quiet a bit of strength. She can no longer walk or even stand on her own and when she lies down it is very hard for her to get comfortable. There has been a lot of crying in our house. After 5 days of solid bed rest her little muscles in her legs have tightened up and that is our culprit. Thank God for the physical therapy evaluation on Friday. I was beginning to think the MRI was wrong. Natalia will finally start PT next week and get all those muscles back into shape.
Natalia got measured for her new wheelchair last Thursday. We made the decision to buy her chair rather then rent because it would be custom fit and easier for her to use. It is going to be kid sized...pink and black with a gel seat, longer brakes and stroller bars. It also has a "grow kit" which means it can grow as she grows. We have seen how much the borrowed wheelchair has helped her mobility and we are told that the custom fit wheelchair will allow HER to be able to move more.
BLOOD WORK LOOKS "GREAT"! Edgar and Natalia head back up to UCSF on Tuesday for Natalia's 1st chemo in 2 month's. Go chemo Go fight that tumor.
Oompaalumpa #10...for any of you who would like to see the FABULOUS SOPHIA in her very 1st role. The Chocolate Factory will be taking place on February 28th at 1pm and 4pm and March 1st at 1pm and 3:30pm at the Fresno Auditorium Theater...ie the Veteran's Center in downtown Fresno. Tickets are $11 at the door. She welcomes all supportors as she is shy...well for the 1st few minutes anyway.
Much love to you all,
Roni
Natalia got measured for her new wheelchair last Thursday. We made the decision to buy her chair rather then rent because it would be custom fit and easier for her to use. It is going to be kid sized...pink and black with a gel seat, longer brakes and stroller bars. It also has a "grow kit" which means it can grow as she grows. We have seen how much the borrowed wheelchair has helped her mobility and we are told that the custom fit wheelchair will allow HER to be able to move more.
BLOOD WORK LOOKS "GREAT"! Edgar and Natalia head back up to UCSF on Tuesday for Natalia's 1st chemo in 2 month's. Go chemo Go fight that tumor.
Oompaalumpa #10...for any of you who would like to see the FABULOUS SOPHIA in her very 1st role. The Chocolate Factory will be taking place on February 28th at 1pm and 4pm and March 1st at 1pm and 3:30pm at the Fresno Auditorium Theater...ie the Veteran's Center in downtown Fresno. Tickets are $11 at the door. She welcomes all supportors as she is shy...well for the 1st few minutes anyway.
Much love to you all,
Roni
Sunday, February 1, 2009
Finally Home
Natalia was DONE by Friday. She did not want to be at the hospital at all. She thought everyone should know it as well. Edgar and Sophia left Friday afternoon to get home in time for the Make A Wish Gala of Stars and Natalia had to stay in San Francisco. My ultra polite, well mannered daughter told everyone doctors, nurses, teachers and the Father that she was DONE and wanted to go home. She was so mad about being there that her blood pressure even went up. She complained about everything, politely of course. They told me Friday night that she would probably be released Saturday if she was still doing well. I told her to calm herself or they would keep her longer...low and behold the blood pressure went back down. Saturday morning the morning nurse came in to say we would be released as soon as the doctors saw us, her drain tube was removed and the wound team saw her. My first thought was holy crude we're getting out of here and our ride is still in Fresno. My second thought was fresh air...we'll walk to Family House. Natalia was all for that idea. Today the main thing she says hurts is were the IV was for the past 5 days.
Today I think she is the only well rested one of us. Poor Sophia has been on a dead run since Tuesday...I have heard she was quite the little diva/life of the party at the Gala of Wishes. Mom said if we charged to take pictures with her we would have made a fortune. Edgar and I both did the drive there and back 4 times and Pia did it 3...I am being to know the names of the cows along our route.
Much love to you all,
Roni
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