Monthly Archives: August 2009

School Begins for Paco

There have been a lot of changes for our oldest, Paco. He’s had a tough few months; with the sale of our home in San Jose, leaving his beloved Centro Armonia pre-school, moving to Davis, and the added stress of his new brother… not to mention Erin’s medical condition. One of the reasons we chose to move to Davis in April was the quality of the schools here. We had hoped to register him for a K-6 Spanish immersion elementary school run by the city. However, we arrived in town too late to register for the lottery and ended up 14 spaces down on the wait list. We were told not to be too optimistic about getting in.

Davis turned one of their public elementary schools, César Chávez Elementary (por supuesto), into this Spanish Immersion magnet school back in 1982. In years past we understand that getting in was simply a question of requesting it. This year, perhaps partly due to the economy (they can afford fewer teachers and some parents may have chosen the public option rather then private schools) the school was oversubscribed.

Last Friday afternoon we received a call from the school that they had a last minute spot open up for Paco and asking if we wanted it. YES.

Paco was both excited by the prospect of continuing his education in Spanish but was clearly anxious about starting at yet another school (he had been attending a summer program at the English school near our home and made some friends with potential classmates).

Today was his first day of school and I seems as if they sent us back a new child. I think all of his anxiety over the new school and the move melted away after he met his wonderful new teachers and instantly hit it off with a number of his new classmates. I believe he is one of only two students in the class who already speak Spanish. I picked him up at 3 pm and he had a smile from ear to ear and couldn’t stop talking about how much fun he had. Of course, this being Davis, I picked him up by bicycle (he rides on a little bike that is trailered behind mine for now) and we rode to Baskin Robbins for a first-day-of-school treat.

As a side note, his teacher is a Davis native who was a member of the third class to enter Kindergarten at César Chávez, completed elementary school there, and returned a few years ago after teaching at other schools in the area.

Here are some photos of our big boy.

A Toast to the Lion

Reasons I love my mom: I just called her to make sure she knew about Ted Kennedy. I have always thought of our family as Kennedy-esque (a quieter version, with our camp in Discovery Bay, not Hyannis Port). My mom is so…positive. She was happy to know so she could turn on her TV and watch the coverage. We were both happy to see him surviving 4 mos longer than the traditional prognosis for his situation (mine is more optimistic). And, well, we both would have watched the coverage regardless of my shared health condition. For me, I look at it as I hope I am half as productive as he has been. And I will look at his future as mine…sucuumbing at 77 seems young, but that is almost 40 years away.

So raise a glass to a flawed but full-of-life Irish Catholic Liberal Politician. (I need to buy some Guinness). Sláinte (“Slancha” out loud). To Your Health.

Coincidentally, the LiveStrong Conference is being held in Dublin.

http://www.livestrong.org/atf/cf/%7BD0794917-422C-499C-9C48-9ED3DDC42947%7D/Global%20Summit%20Agenda.pdf

Visiting the Radiation Area (Barbara’s Turn)

I was sitting in the lobby today burping baby Tom after he had finished his bottle, when Margaret, a medical clerk, came out and asked if I would like to go in and witness the radiation. She said that she would hold Tom.

I had been as far as Dr. Chen’s office before, but had no idea of what was down a hall to the left. First, I found Erin waiting with 3 other ladies in the ladies’ dressing area. Erin had already found out that one of them had a mother from Co. Sligo, Ireland. Erin said that Steve had waited in the Men’s dressing area when he visited.

Then we got called in shortly. The 2 technicians (Ben and Denise) explained that they were going to irradiate with 2 different photon energy beams. Ben said one was a 6X and the other 16X. (Sounds like children’s or fat sizes.)  The machine is enormous and just swivels around.

I guess I was so busy listening to Ben, that I didn’t even notice his clamping the mask on. Erin says when he does it, it is most comfortable.
I now appreciate Steve’s photos more.

This is Erin: What mom is not saying is that when the head technician, Terri, found out Babs was a retired physics professor. Terri was all excited to show her the area and tracked down Margaret (apparently, they loooove the baby) to watch over Tom so Mom could have some scientific minutes. I think they are unaccustomed for a patient to have such a cool-headed mom present, smiling the entire process of her daughter’s radiation!

Radiation Details

Steve here –

I accompanied Erin to her radiation treatment and visit with the radio-oncologist last week. With the technician’s permission I took some photos figuring that many people might be interested in the procedure. Erin had been pretty cool about the experience. She raved about the kindness of the staff and said that the radiation was was actually relaxing (she fell asleep a few times).

Getting prepared for radiation

Getting prepared for radiation

The radiation facilities themselves are quite impressive. The waiting room looks more like a luxury hotel lobby than a hospital. It’s located in a separate building from the nearby Kaiser clinic. The interior is decorated in warm woods and asian-inspired artwork intended to relax the patients.

There are two radiation treatment rooms, each with a big control panel in an anteroom outside some thick doors with ominous radiation warnings on them. As you can see in the photos, the equipment is quite large. I was expecting something more like a dental x-ray (how it was described to me at some point) but these looked more like something from a James Bond movie. Erin is strapped down to a metal table and a double-sided machine moves around her.


The most difficult part to watch, though Erin seemingly gets through it without as much as a twitch, is the special mask they use to immobilize her head. This plastic mesh device is custom fit to her face and has markings on the side that they align with lasers to ensure that she is in the exact same position each day of radiation. As I later learned, the treatment is administered through six positions of the machine, each of which applies the radiation in over 120 separate segments. They measured everything a few times. Two technicians double check each-other’s measurements and the computer also has a failsafe that won’t allow the treatment to begin if anything is remotely out of position.

The treatment itself only takes about 5 minutes but the measurement process took about 10-15.

I stayed outside with the technicians and Erin was alone in the “hot” room while the treatment was applied. The NASA-esque control room included computer screens monitoring the treatment details and closed-circuit TV screens focused on Erin.

Following the treatment, they removed the mask which had been bolted to the table. It had been so tight that Erin was left with a mesh impression on her face and head. She said that with the mask on she can’t even move her lips a millimeter.

All in all, I was impressed by the facilities, the staff, and most importantly, Erin’s ability to deal with the treatments. I hate to see her having to go through all of this but am thankful that we have access to such great treatment.

I Hab a Cold

The radiation team thought I looked so worn out because of their work. I said, “no, you guys are 3rd” first the cold, then Avastin, then radiation!

Bdub watched “TDub” today and Clark watched him first thing this morning, then watched me as we both took a nap between appointments at Barbara’s house.

Babs came with me for my check up with the Oncologist. We both like him. He does not mince words, not a sappy speaker. Normally Avastin is the treatment for a recurrent tumor, so if I were to get one, he had the alternative drugs. But he seemed, very hopeful, as am I!

Back to bed.

Erin

Fantastic Relatives Are a Great Reason to be Happy

Not enough photos of all who have helped. But today, we have good documentation.

Two Happy!

Two Happy!

Reasons to be Happy

Paco has changed 8 hrs of language a day, a new house, a new town and a new brother. Then he faced a new mom to look at with a shaved head (and a giant question mark engraved) and a rash (which he noticed today was not as bumpy).

He may have temper issues, but here is where he seems to use unlimited love and patience.

View of the City

So this is the coolness of today. This morning I had my radiation at Kaiser, mom watched Tom and the staff was great as always. Now, I am sitting in a room on the 12th floor of the UCSF medical center. I am looking out (ok not looking this minute, but I am next to the window) at a view of the City. I am taking in an innovative and expensive IV that is the cutting edge of cancer treatment. It is freezing here, and having nothing to do with chemo, I am cold (it is really cold!). So I am sporting a warm, comfy hat knit by my aunt. Another aunt is in charge of baby Tomás, Steve’s mom is in charge of Paco in Davis (they are eating steaks like true Argentines, nice and bloody) and my mom is shopping for me at the moment. My sweetheart of a husband (we had a spat, and are on the high road now!) is trying to work and not take too much advantage of Aunt Pat at the same time. There is WiFi, so I am happy.

Erin's first Avastin (UCSF)

Erin's first Avastin (UCSF)

Familial Concerns

So far this week I have received numerous e-mails and text and calls from my cousins.  I have not posted in a week!  More due to a busy life then anything else.  Cousin number 3, (I think she is number 3, my mom will correct me) just called and told me to post! I am at her little brother’s house in Santa Cruz.  They are insisting on watching Tomás, sending me to the guest cottage, (I am taking Paco, despite their set up for him with their kids) and putting my mother-in-law (suegra) in their daughter’s room. Paco is exhausted, Tomás is sleeping and Judy and I are the most relaxed we have been since I don’t know when (for me, in Paris, November of last year).

A quick medical update per the instructions of my cousine…Radiation is going well. The side effects are mild. There is some heat radiating, but the staff is full of a masterful attitude and technical skill. My mom sits with Tom and each staff seems to come out and say hi to him. The side effects from the chemo drugs are decent as well. Steve took some photos of me under the mask. I don’t find it too hard as I fell asleep during the treatment today.  I did get a bout of acne-appearing rash (I look like a 14-year old) but today, got the protocol cream. The rash was effecting my vanity, and thanks to that, I contacted my connection to Genentech (El Quimico, let us say) and he reminded me to call UCSF to have it sorted.

The joy of the last two weeks has been our annual babysitting of cousin # 3′s black lab, Ruby, whom we watch every August. Ruby’s parents did not want to burden us with the fostering of their sweet dog.  We insisted and Ruby gave everyone a nice break from the chaos of juggling radiation, appointments, etc.   Steve especially liked the excuse to leave the house for a while. Normally, I walk Ruby every year, and was counting on her to walk me into shape. This year we actually fought over who got to walk her. I acquiesced.

Steve left on  Wednesday for his annual Pebble Beach pilgrimage to the Concours d’Elegance.  (I got to walk Ruby for 2 days, then was so late, that the suegra and Paco took her to the park for the Frisbee dash). Thanks to my mom and the suegra, juggling is tiring, but doable.

I apologize for not posting earlier, there is more to say, but I still feel so fortunate. I keep getting signs of warmth from everyone. The technician (Ben, the one who thought our family was a gift) told me today he dreamed of a Bentley, and knew what a Bugatti is.

Oh, If you get worried, when I get worried, I go back to this site. This is basically what the expert told me. I am in a great percentage. http://www.medifocushealth.com/OC009/Treatment-Options-for-Glioblastoma-Multiforme_Prognosis-for-Glioblastoma-Multiforme.php

I am sitting outside in Santa Cruz, despite the fire and sharks, it is relatively clear out here. I cannot complain. Life is too good.

Hope you have a wonderful weekend. Love, Erin

Beau-Père.

My mom has been seeing Clark for 2.5 plus years. And they have a wonderful relationship. He is a wonderful man who seems to have the same effect as my brother Brandon in that he elevates the mood of the room when he enters.

Today, my mom had the chance to play bridge and Clark volunteered to hold Tom while I got my burn (I call it a burn to explain it to Paco). He was early, which I love. He fed Tommy a bottle while the wizardly Radiation Technicians took extra measurements to ensure no frying of my optic nerves or brain stem. Because Clark and I were both early, I hopped the appt before mine who had yet to arrive!

Upon my return, Clark had been hearing the stories in the lobby and making friends. Not a surprise. Then he learned I had intended to go to Trader Joe’s and insisted on following me and playing with the babe outside while I shopped in freedom. The great thing about this is that he would have offered regardless of health concerns. He would have offered 6 weeks ago, he would have shopped for me 6 mos ago. He is full of generosity. He sat on the tailgate and let Tom roll around on the blanket and play. For over 30 minutes. When I came out to say thank you for a wonderful shopping trip, he laughed that I was treating it like a splurge to shop for 30 minutes without kid. Yes. Yes. Yes.

Beau-père and Lemon

Beau-père and Lemon

I was annoying in the store and had to tell anyone who asked me how I was doing that I had the best surrogate dad ever. I think I need to start calling him the French for both step-dad and father-in-law: beau-père or bp. Because it translates as handsome father, it seems appropriate.

My list of people who have helped, people who have offered, people who have sent things, people who have obeyed my request to wait until my challenging fall season to help (I have a vision of teams to play in shifts) is massive. But today, I just need to thank the universe for the gift of mon beau-père.

Off to nap. Erin

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