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.