New Family Blog

We just launched a new blog called Thinkfit Family Fitness.  Check it out.   Thinkfit Family Fitness

First Day of School

Dayssi and her 1st grade teacher, Miss Ginna

Dayssi Swim Champion

Dayssi celebrates after her blue ribbon in the 25m freestyle event

Jeja Dayssi and India and the quest for Hap Ki Do

Last night India and Dayssi completed their "Quests" and received orange belts.

More Soccer Pictures

PS: India scored a hatrick in this week's game (that is 3 goals for you neophytes)

Soccer Mom and the Superstars

It's soccer season an India and Dayssi have taken to the field. Mom was on snack duty last week and did a fabulous job... gotta have the sliced oranges.

Bigger and Better Things

Yesterday was Dayssi's first monthly check-up since going off therapy.  Her blood looks perfect and so does the rest of her!  She does have a bit of a rash on her upper body, which started in Hawaii the week we stopped giving chemo pills, and got pretty interesting for a week or so; it is dying down now.  Apparently most kids get this rash post treatment -- no one knows why.  But it is good to know that it is normal, not unusual, not indicative of anything we should worry about, so we can just ride it out.  

Turns out we will not have any more LPs this year, contrary to what we were originally told.  Dr. Dahl reports that all of the ruckus we made earlier this year prompted him to look at the data before requiring us to do the LPs, and the docs all decided that they are not learning anything useful from doing the extra LPs.  So, one (well actually four) less thing(s) to worry about.

Today was Dayssi's first day of kindergarten, and it was a success.  She made a new "best friend" whose name she can't remember, and came out of the classroom jumping, dancing and talking a hundred miles an hour.  India's first day of 2nd grade was also fantastic.  She loves her two new teachers and has lots of friends in her class.  She said tonight "I"ll bet tomorrow will be even better."  I want some of what she is having.

We'll update next month after Dayssi's check up, unless something really blog-worthy happens in the meantime, like good pictures of a soccer match, or something.

No Mo Na-Na

Talk about your major milestones -- finishing treatment for leukemia was pretty big, but it pales in comparison to what happened today:  Dayssi took all of her na-nas to the hospital in a little plastic baggie and gave them away, just handed them out like presents to all of her favorite people, with a big smile, just like that.  She asked only once this afternoon if she could use one when she got home, and then just grinned when I reminded her that they were all gone and that she was done with them.  After dinner she crashed on the couch while watching Peter Pan with India (who finds out tomorrow what role she will play in her musical theatre camp's production of Peter Pan -- more on that later).  I put her in bed and haven't heard a peep.

Dayssi had her first na-na at 10 months -- which is kind of late to start -- and she was instantly hooked.  I have dreaded this day ever since.  But now that it has come and almost gone (seven hours until morning) without incident, all I can say is:  Thank you G*d for creating the na-na, and for guiding my child to it when you did.   It has gotten us through so . . . much . . . crap.

Thank you also for giving us the strength and the wisdom to let her keep using it, until she was almost 5, despite the obnoxious gratuitous comments of many many complete strangers who have felt compelled to tell her that she should take it out of her mouth because pacifiers are for babies.  Who are these freaking people, and why are they bothered by Dayssi's pacifier??

Anyway, our love affair with the ubiquitous na-na appears to be over.  On to bigger and better things.

Aloha & Mahalo

We just got back from a fabulous week in Hawaii. Fun, sun and surf abounded.

See for yourself

No Mo Chemo

Dayssi is officially finished taking chemotherapy.   She has a final bone marrow aspiration and lumbar puncture to examine spinal fluid next week.  We'll update again then.

Waiting to exhale.

final steroids

Dayssi took her last dose of steroids yesterday.  Hallelujah.  She's had two 30-day courses and 2 and a half years of 5-day courses, once per month.  They make her depressed, angry, whiney, physically aggressive (pushy, punchy, slappy), unable to sleep through the night and, as you'll recall from our early posts, hungry all the time but only for very particular things.  We are wondering how much the new, steroid-free Dayssi will resemble Dayssi on steroids.  Whether she is really that demanding, that stubborn, that picky, that physical.  I assume her charm, her affection, her drive and sense of humor, and her tendency to ponder the big questions in life are not drug induced. We are about to find out.

I actually cried as I was getting the last dose together, realizing how much I absolutely hate this drug in particular, not to mention the relentless regimen of remembering to administer all of these medicines, how much energy I have spent over the past two and a half years bracing myself for the steroid week, which coincides with the vincristine week and, every third month, the spinal methotrexate week, wondering how I was going to remember to give her all of her medicines at the right times and when the side effects would manifest, whether Dayssi would go to school or not, whether her legs would ache, her tummy would hurt, or her bowels would shut down, and the guilt: of caring or at least acting like I cared about anything else, of leaving her at home when she felt under the weather, to do anything but especially, to go to work.   These are things I am not going to miss.

Jim and I tried to rally some excitement around the last dose of steroids.  The girls looked shell-shocked.  Dayssi did not want us to document the final dose taking on camera -- in fact she refused to take the medicine until the camera had been put away (remember, she had been on steroids for five days at that point). She does not remember that they were awful for her in the beginning, and for many months -- before she learned how to take a pill, when she had to choke them down in disgusting liquid form.  She doesn't know about the AVN that can be a very serious side effect (especially in older kids) -- the steroids actually block blood flow to the joints, and the bones just die and disintegrate, never to grow back.  I don't think she associates any of the side effects she has visibly experienced with the drugs, although she has learned to make quite a sport of asking for special foods at special times "because I am on steroids."  She knows, I am sure, that this source of her current power is eroding with the end of her treatment.  This is not a happy thing.  India, meanwhile, is I imagine sick and tired of us making such a big deal about Dayssi's dumb treatments.  When I am looking for reasons to feel guilty, India provides plenty.  She has tolerated SO MUCH, on account of the steroids in particular. Endless crying jags, relentless pestering, watching us tolerate things that she would never have gotten away with.  It is not fair, as she reminds us often, what has happened to her over the last 2 1/2 years.  And as much as I look forward to trying to restore the balance in our family, I have no idea how we are going to do it. 

Updates, all good

Dayssi had vincristine yesterday, with daddy. Two pokes. Lots of stickers, gifts from the child-life folks, treats from the cafeteria, the works. She came home smiling. Daddy seemed unruffled. And, only two administrations left. We are going to make it.

Afterward, Dayssi went to her new elementary school for a meet and greet with her kindergarten teachers. She is among the youngest of the kids entering kindergarten (she'll be 5 in October), but she fit right in. Separated easily from me, ran to the front of the room to listen to the story, and looked pretty blase about the whole thing. She is ready.

Meanwhile, India was chosen to represent her class tomorrow at a retirement celebration for the school principal, with an adorable friend of hers whose name I won't mention because I believe they kind of, in a first-grade way, have little tiny crushes on one another. Recently this wonderful young man missed India's birthday party because of a conflict, but asked his mom to bring him to our house after the party so that he could deliver a present and wish India happy birthday. She almost fainted when I told her he was at the door, and he completely blushed when he saw her.  India is not a big talker about what is going on at school, but she mentions this little guy every once in a while, and always with a special gleam in her eye.  Then, today, while I was volunteering during math, one of India's friends (who is from India) asked me why we named India India. I told her that we chose the name India because we think it is beautiful, and our prince charming, who was seated nearby and listening, apparently, looked up from his work and said earnestly, "So do I."

I am sure I've said too much about this because I am now compelled to beg anyone reading this blog to PLEASE REFRAIN FROM MENTIONING ANY OF THIS TO INDIA. This frienship is very special and I do not want to make her feel self conscious about it.  Thanks for your cooperation.