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.

I wish for the werl to have pees.

This was India's contribution to an big Earth Day poster at her school on which kids wrote their own wish for the earth.  I love everything about it.  

One more down

Dayssi had vincristine on Monday, business as usual.  This time even the vascular access team had trouble.  There were three of them, with an ultrasound to look for good veins, and when the leader announced after her second unsuccessful poke that they were going to try once more and then quit, I almost fainted.  What do you do when the vascular access folks walk out on you??  But the third poke worked, and they got the medicine into her, no burns, and we are one step closer to going off therapy.  

I wrote last time that Dayssi will receive a year's worth of additional spinal taps (LPs) after going off therapy (OT) and inadvertently created a stir on the ALL kids email list.  Apparently we are the only family on that list that expects extra LPs after going OT.  I asked in clinic on Monday, and it turns out we are having LPs only to check for leukemia cells in the CNS, not to inject more chemo.  I believe this is still unusual, but hey -- that's life at Stanford hospital -- way out here, apparently, on the cutting edge.  

I know that sounds cynical.  Despite our recent frustrations, we know we are blessed to be here and not somewhere else, and to have our oncologist and his 35 (37!) years on the cutting edge in our corner.    

So there you have it, just the facts.  Will try to post again with something more entertaining when I have a few more minutes to spare (ha!).   There is lots to say about India's new, fabulous haircut, Jim's new wrestling accolades, my adventures in bluegrass harmony singing, and the ways in which Dayssi and her enormous spirit continue to stomp all over her cancer. 

 

One more down, four to go

Dayssi had vincristine and a lumbar puncture yesterday and it all went well.  The vascular folks are on board and there was no trouble accessing Dayssi's vein (above the wrist).  We were at the hospital from 11am until 4:45pm -- Dayssi had to fast until 3:30 -- but she didn't complain and was her cheerful silly self throughout.  We have only four monthly vincristine administrations left before Dayssi goes "off treatment" in July.  We have exactly five lumbar punctures left, during which they inject chemo into her spinal column.  There is only one more  LP before going off treatment, but this procedure will continue every three months for a full year after she goes off treatment, as a precaution against a relapse in the central nervous system.  It is nice to be starting the count down.  

 

India's 7th Bithday

India had a "science" party with lots of experiments and activities.



A good time was had by all.

update long overdue

Hi.  We are still here.  Dayssi's illness and its treatment are continuing to inch their way into the background of our lives.  Since Dayssi's vincristine burn and our assertive follow up, we are getting better care, and Dayssi has continued to do well.  After the burn, we called in the experts (the most experienced clinic nurses), who literally broke into a sweat trying to get the IV started  (successful only after three sticks).  The top gun was out the following month, so we brought in the vascular access team.  Within second we learned that the veins in Dayssi's hands are totally shot and cannot be used anymore.  I don't know whether the damage is permanent.  This explains of course why it has been so difficult to use the veins in Dayssi's hands, but it does not explain how the most experienced pediatric oncology nurses at Stanford hospital wouldn't have known or at least suspected that this was an issue.  The vascular specialist took one look at Dayssi's hands and said, "See that?  See how the veins are dark and look different from yours?  They are done.  Her hands can't be used anymore."  THen she used an ultrasound machine to look for good veins in Dayssi's forearm, and started a line with no trouble that worked beautifully.   She explained to me that the hands are not the ideal place to administer vincristine because of the potential for damage to bones, joints, nerves etc, noting that the forearm is less dangerous.  When I asked why the clinic administers in the hands, she looked me right in the eye and said with more than a hint of irony, "I  have no idea.  Next time you are coming in, call me."  Great.  But at least now we know whom to call.  Well, I can't call her myself of course; the clinic has to call her.  But I have already put in the request.  Dayssi has a lumbar puncture and vincristine on March 26.   With any luck there will not be a fight.   We will not access her without the vascular team.

In other news, India turns 7 on Friday.  She is having a few kids over for a science party on Saturday.  Having searched high and low for a science cake, it is looking more and more like I will make one, in the shape of a beaker, with icing fluid and bubbles inside and flames (candles) shooting out of the top.  Wish me luck.  

India has started a pre-competitive swimming program at our local pool, and she loved the first day.  Dayssi was also eager to join of course, but the coach suggested she wait until fall.  Meanwhile, she is working on her freestyle and backstroke moves in the baby pool while India does her thing.  She is also working on her letters and numbers with great zeal, filling pages and pages with letters and numbers strung together in random sequence and asking, "What does it say?"  She is particularly focused on making a perfect S, and she has started spelling signs: s-t-o-p, e-x-i-t, t-o-y-o-t-a, etc.  It is pretty amazing.

I've been volunteering in India's class once a week, during math, which is an enlightening and humbling experience.  I used to think teaching MBA students was hard -- ha!  Try taking five 6-7 year olds who are struggling with number sentences into a room to complete a work sheet.  They are struggling with the math so they don't like it.  They want to talk about everything except the math.  They need to sharpen their pencils, get in arguments about who is looking at who sideways, and test whether if they act helpless ("I just don't get it!!"), refuse to try long enough, I will just tell them how to do it.   Of course I don't, but then I worry that the teacher will think I am not being helpful (my assignment is to get them to finish the worksheet).  What's funny also is that most of these kids can do it actually, they just put it off as long as possible, or try to get out of doing it (time's up!).  As an aside, it has been very gratifying to be in class with India.  She is a fantastic student and the most wonderful human being.  I am very proud of her, every week.     

Thanks for checking in; sorry it has been a while.   Will try to post some pictures after the birthday.