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.

Dayssi's Wish: Backstage at the San Francisco Ballet’s 2007 Nutcracker

Well Dayssi’s wish came true today. We were ushered up to San Francisco in (an embarrassingly long) stretch limo to see the SF Ballet’s performance of the Nutcracker. We’ve seen many versions of this classic ballet, but this one was over the top. The dancers were magnificent. The musical performance was inspired, and the production was sumptuous and magical -- from the costumes, to the set, lighting, and special effects.

After the performance, we all went backstage to meet the crew, the lead dancers, and the managing director of the Ballet. Everyone was wonderful and Dayssi and her sister India were the center of attention. The stage manager made it “snow,” even heavier than it had during the show, and the girls danced and had a snowball fight with their new friend Lorena, one of the company’s prima ballerinas. They got to ride in Clara’s magic couch as well as the Snow King and Queen’s Chariot.

The folks from the Make A Wish Foundation and the Ballet were amazing. The event is one Dayssi will remember for a lifetime.

Some action shots are included below for your viewing pleasure.

Vincristine Shmistine

Mom is more upset about this than I am. Not that she isn't entitled to be angry about what they did to me... but I am OK so don't y'all worry too much.

Love Dayssi

PS: Do you like my stickers?

Vincristine burn

We've had a rough week. When Dayssi received her monthly vincristine last Monday, some of the medicine leaked out of her vein and gave her a serious chemical burn on the top of her hand. This is a rare but not surprising complication; the nurses go to great lengths to make sure the catheter is in the vein, and the vein is in tact, to avoid this problem. We believe it was a tiny leak -- probably the needle knicked the vein but stayed inside -- so very fortunately only a little leaked out. Judging from the damage it did, and knowing what we now know about what can happen when these vessicants leak out of the vein, we know we are incredibly lucky. The injury could have been devestating. These chemicals are designed to kill cancer cells, and when they leak out of a vein they kill everything they touch, potentially including nerves, muscles, vasculature and bones, none of which can regenerate.

Sorry for the drama -- we do not appear to have had this extensive an injury. My only excuse for providing this information is to justify how freaked out I am about this complication, which is not life threatening (although it has been INCREDIBLY painful), but which has shaken my confidence in the ability of the medical experts, and in myself, to protect Dayssi from devestating unintended consequences of her treatment in general.

I am angry at the nurses who, despite the fact that they administer this drug to kids every day, let this happen to Dayssi on Monday. My anger is compounded by the fact that this accident happened against the back drop of escalating errors and incompetencies in our clinic, which make it hard for me to see this as just bad luck, and even more by the fact that almost everyone in our clinic has been in CYA mode with me, trying to minimize the negative consequences of the mistakes they have been making, and who have persisted in believing that there were no signs that this was happening when, as I remind them every day, there was no blood return from the vein and Dayssi complained of pain when the chemo was introduced. This was an error, not an accident. No one has apologized. And what's worse, I don't know how to orient myself psychologically to see Dayssi through another 7 administrations of this drug at the hands of the same people (who are, to their credit, showing immense concern and trying to help minimize any further complications of this injury).

Practically speaking, that is not entirely true. I have already insisted that a vascular specialist be brought in to start Dayssi's IVs from now on; the clinic has agreed. I have already decided also to require only one of two extremely experienced nurses (neither of whom is supposed to be doing this anymore) administer the chemo. But emotionally speaking, I am stuck between a rock and a hard place. Dayssi needs this chemo to produce the outcome we are hoping for -- at least this is what they tell me. But I can barely muster the will to take her by the hand and lead her into this clinic, to hold her down while they poke her, to leave her alone in the operating room while someone I don't get to see administers intrathecal chemo. And I don't know what to do about that.

Dayssi's 15 minutes

Yesterday the Make A Wish Foundation announced at a press conference that Dayssi is their 4500th wish child. So far the only press coverage we've seen is at the Palo Alto Daily News (http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet), where there is a nice story and cute photo of Dayssi hugging the real ballerina who came out from her rehearsal with the San Francisco Ballet just to hang out with Dayssi. She was very kind, and she gave Dayssi a used pair of pointe shoes with her signature on them.

But this was just for the press. Dayssi's real wish (to meet a real ballerina) will be granted next month when Make A Wish and the San Francisco Ballet host us at a performance of the Nutcracker, and invite us backstage afterward, where Dayssi can now reunite with her new friend (who plays the Sugar Plum fairy in some shows).

These other photos were taken by one of the Make A Wish folks. As usual, it was hard to get Dayssi on camera. She turned the photographers into paparazzi who had to wait patiently for most of the morning and then chase her down every time she emerged from behind one of us, shutters clicking madly. Above she is holding a beautiful giant card they made for her with signatures from all of the SF Ballet dancers inside.

Here Dayssi and India are posing between two of the amazing Nutcracker costumes they brought out for the occasion.

http://www.paloaltodailynews.com/article/2007-11-9-pa-ballet

Halloween 2007

We had a great night and collected lots of candy at our old stomping ground (Stanford West).

Goth Girl and Pretty Kitty pics below