A blurb from the book Childhood Leukemia; A Guide for Families, Friends and Caregivers

Chemo is such a horrible thing to do to your child, but at least you are actively fighting the beast, so when it ends you feel a bit like you're flying without a net. You get so used to this bizarre new "normal" of treatments ad blood tests and doctor visits and then suddenly you stop, but you don't get the old normal back.
I think it's probably best to approach the end of treatment as a chance to see your child get his healthy color and energy back and a opportunity to create and explore a new "normal" for your family that is richer and more meaningful than the one you left behind. It's also really nice to finally have the chance to reconnect with your spouse (and other children) and heal all the relationships that have taken a beating during the stressful treatment period.
As for me, perhaps a year after Joseph's treatment I existed in a dazed mix of emotions and thoughts. I was fearful of relapse, thrilled that Joseph had survived the cancer and the treatment, concerned about what late effects lay around the corner, all tempered with a warm and thankful feeling that I knew I would never, EVER take my kids or my good life for granted anymore or sweat the small stuff the way I used to. There were days I felt like I didn't want to crawl out from under the bed, and other days I couldn't stop singing and being silly.
I think off treatment is a lot like on treatment-you just have to take it one day at a time.

Today I am obsessed with highlighting, copying and writing down points about the effects of cancer treatment. I have a meeting with the school staff tomorrow and I'm going in armed. I just logged onto my e-mail to look up another blurb about long term late effects and found that a child from my leukemia support group has relapsed. Just three months after finishing treatment. *shudder* Isabel is almost five months off treatment. She's okay. She's fine. The cancer is not coming back. Gah. I just want to put this shit behind me and well...I can't. Because it won't let me. I can't just shake it off because it's always there, hovering like some ghastly ghost. The further she gets from her initial diagnosis the better, no matter what happens, so I will continue to put one foot in front of the other and keep on keeping on.

I have three books on childhood leukemia stacked by my feet, a binder from the hospital about what to expect off treatment, and four papers I'm highlighting, plus the two pages I've typed out and need to print.

I'm in firm denial that Isabel will have any problems whatsoever. Serious denial. I don't want it. I don't want cancer to take away part of her brain function. No, unacceptable. Therefore, I will prepare for it, but refuse to believe it will ever happen.

I belong to an online support group comprised of parents of children with acute lymphoblastic leukemia. The other day I asked a question about Isabel's schooling. I was wondering whether or
not to keep Isabel's 504, since she is now off treatment. A 504 plan spells out the modifications and accommodations that will be needed in school.

Isabel has had a 504 since starting kindergarten. She still had over a year and a half of daily chemotherapy to go at that point. Isabel's plan had basic things like no penalties for absences, being able to leave school at the drop of a hat due to steroids/chemo side effects, strict hand washing, rapid notifications about any school illnesses, etc.

Now that she is 5 months off treatment and doing very well, I wondered if I should keep it. Isabel's immune system is back to normal, her internal chest port has been removed and she is off all medications. Within a day of asking the leukemia support group, I was flooded with wonderful reasons, great tips and excellent references to keep the 504 in place.

I am now fully prepared to sit down with the school staff and keep them up to date on what we need and want for our daughter.

I realize now that part of me just wanted to throw the 504 out, close the cancer book and be done with it. Then there is the part of me that knows that it never really ends. I can shut the book, but it will forever remain on my coffee table, much too big and awkward to slip back into my bookshelf.

By keeping this 504, I'm not inviting relapse or defining us by cancer. Rather, I am honoring the strength, resilience and creativity that got us through the long dark tunnel and out to the other side.

I'm so thankful for the invaluable internet support group. They help me both logistically and emotionally.


http://www.curesearch.org/for_parents_and_families/endtreatment/article.aspx?ArticleId=3323&StageId=4&TopicId=82&Level=1

This is the link I will be using to educate the staff about late cognitive effects. This is not an area that most educators are aware of. God willing, I'll never have to worry about it but I don't want to miss it, should they occur.

On Sunday Isabel, Gabriel and I are going to a reception at Studio Gallery in San Francisco to see another piece of my brother's art on display there. I love being able to take my children to see such fun and inspiring art (and I just love being able to say "that's my brother!").

Today I discovered my eldest brother was featured in Image.

I'm very proud of both my brothers for all their many accomplishments and for being such wonderful uncles to my children.

Announcing the 2009-10 Milton Center Fellow: Agustín Maes

The Milton Center at Image is pleased to award its 2009-10 postgraduate fellowship in writing to Agustín Maes. Born in New Mexico, where his family has lived for over three-and-a-half centuries, Agustín grew up thirty miles north of San Francisco in Novato, California. He holds an MFA from The New School writing program in New York City, and an MA in theology from the University of San Francisco. His stories have appeared in The Gallatin Review, Blue Mesa Review, Turnrow, and in Ontario Review, and his work was selected for inclusion in New Stories from the South: The Year's Best, 2007. He has served as an assistant editor for Underground America: Narratives of Undocumented Lives (McSweeney's Books, 2008)—a collection of oral histories by undocumented immigrants in the United States—and worked as a coordinator for the Prison Writing Program at PEN American Center, as an assistant editor at publishing house Bloomsbury USA, and as a grant writer for St. Anthony Foundation, a Franciscan-run nonprofit charity for the hungry and homeless. A Roman Catholic, Agustín is a parishioner at St. Ignatius Church in San Francisco. We look forward to welcoming Agustín to Seattle in the fall, where he will work on a collection of thematically related stories—narratives concerning characters marked as social pariahs, people who are in some way rejected by their peers because of the grim burdens they must carry.

It's barely been two days at the children's new school and they are just filled with excitement over it. Listening to them chatter about their fun day over dinner last night really showed us what a great choice we made in sending them to this elementary school.

Isabel spent the past two years at our neighborhood school more for it's close proximity to our home than the education they provided. Isabel was in active leukemia treatment and our focus was dedicated to her health, the many side effects and the ability to retrieve her easily at any given time. Now that she is off treatment and growing into quite the pre-teen, we found a school that fits her learning style perfectly.

We've been very impressed with the school thus far. The educational program is organized into two hubs, Visual & Performing Arts and Environmental Education. Rather than being in age-segregated groups, students work together across curriculum with other students of all ages.

They have a wonderful kitchen and a gorgeous garden full of fresh vegetables, both fabulous places to foster our children's sense of curiosity. Parental involvement is a big part of the school program and that suits me just fine!

Here is Isabel with the self portrait she drew. I love the details, from the earrings to the sentiment on her shirt. Right on, Isabel!

Gabriel is turning into a great little artist also. Rather than play the other day, as we took our dog to run off leash, he sat down and colored this awesome "Rainbow Dog".

Here I am reading a book to Isabel this morning. Notice her brand new wristwatch she received in the mail yesterday from our friend in Germany. It was such a great surprise and suits her perfectly.

Here are the kids at a pajama birthday party this past weekend. I stare at this photo, amazed that there are two children in it who fought cancer with heavy doses of chemotherapy, lots of hospitalizations and more than a few surgeries between them. You'd never be able to pick out which children are cancer survivors.

Isabel is one of them, of course, and the little girl with the lovely curls sitting next to her is another. That's Maya, who we met and became friends with while our families spent our days living in the hospital. She is now two years off treatment for burrkitt's lymphoma and doing absolutely fantastic.

I don't think I'll ever underestimate the strength or resilience of children.

Today is the first day of school for Isabel and Gabriel!

Isabel is very excited to be in the same second grade class as her best friend, Jaz.

Gabriel started kindergarten this morning!

We checked out the classroom, found his cubby and settled in on the reading couch.

Gabriel loves school and is a very social guy, so he was ready to start his elementary school experience.

We said our last goodbyes and I left, feeling very strange to be driving away in such a quiet car!

Another afternoon spent at the pool. It was the perfect way to beat the 90 degree weather.

It's the last day of summer vacation for the kids! Their first day of (year around) school is tomorrow!