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

Natalia's Results

Goodmorning everyone,
I'm sorry that most of you had to wait for news but we had to process everything. Natalia's tumor is a stage 3 Anaplystic Astrocytoma. It's cancer. We are in for a long road of treatment and trying new things. But as they say DRs say the worst and expect the best. We do not know much about the treatment phase yet because we were not hearing much yesterday after "it's cancer, and we can't make it go away." The worst means we only have a year or two left with her. The worst means that the tumor will never go away just be held at bay for a time. I've said the worst but I refuse to let go of the best. The best is miracles happen everyday and new treatment methods are out there.
Dr Banerjee would like to speak with Edgar and I without the girls to distract us to go over what steps we need to take for treatment. As I said Edgar and I were not processing much yesterday. Currently we are planning to head back to Fresno today. We want to come back, just us, to speak with her and find out what our next and future steps will be. She would like Natalia to take part in a study with a new chemo drug that has been effective in adults for making the radiation work better. We would need to wait several weeks because there is one course in session right now and we need to wait for that to complete. We know they are getting us an appointment with the radio-onogolgist but they said that probably won't be until next week.
Natalia was pretty tired last night but I know she feels the vibes going on. I know Momma and Papa crying all over her yesterday didn't help. Cara, the social worker here, is going to get us registered with different organizations. But again I wasn't processing much so we need to call her to find out what's up.

Much love to you and please keep praying,
Roni

Biopsy Results

Sorry all,
I just kind of left most of you hanging. We will head back to UCSF on Monday so as not to tire Natalia. We have a meeting with Dr Banerjee on Tuesday at 1pm about what grade of tumor we are dealing with and what we are going to do about it. We all went to Sunday school today and now Natalia is napping. I can not wait to finally start kicking this tumor's ass.

Much love to you all,
Roni

Update

Good Evening All,
Tonight, I get bedside duty. Edgar has taken Sophia back to Family House for the night. They wanted to keep Natalia for observation. They have moved her to her own room on the pediatric floor, so, we are out of ICU...YEAH! Sophia helped keep her sister occupied most of the afternoon and even helped to feed her lunch. We have met some wonderful nurses, nurse practioners and residents during our stay here. Felix, her current nurse, says she has now set the bar for med taking. Natalia prefers pills because the nasty taste is over much faster so she just downs them while he has other patients that it will take him a half hour to convince just to open their mouths. We should be able to head home tomorrow after they release her. But that all depends on how fast we can clean up at Family House. They do not charge anyone to stay there but you do have to wash all your sheets, blankets, quilts and towels and clean your room before you go. That way it is ready for the next family in need. We spoke to DR Gupta around 4pm and he said we should know the results sometime early next week and to take her home where she thrives. Next week after he and Dr Banerjee have pow-wowed over the results and discussed treatment methods they would call us in for the go ahead.

Sue: I said hello to Korrine's father this afternoon but he was very distraught and looking for his wife. Please say an extra prayer for family strength at this time.

Much love to you all,
Roni