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