False Start

Happy Halloween! We were turned away from the APU this morning because Dayssi's counts aren't high enough to start Long Term Maintenance (LTM). They have dipped down again since our last post, and this morning she had an ANC of 610, which is 140 points shy of "ok for chemo." We spent a full 2 1/2 hours at the hospital anyway, getting ready for the procedure that never happened. We had to draw her blood and then wait for the counts to come back.

Dayssi and I wore costumes to the hospital, so that was kind of fun, and most of the nurses were dressed up too. India also wore her costume to school and the kids had a parade and Halloween party. Since Dayssi and I were released early we made it to India's festivities and we kind of tagged along so that Dayssi could be in the parade, which she loved. India was a super big sister, calling to Dayssi to come and participate in everything with her, to sit next to her for snack and for a class picture. I was very proud.

So I guess I shouldn't complain. The girls couldn't be happier today. But I'm disappointed that we didn't get the procedure under our belts, after all of the emotional prep work. I feel like we've been through the ringer, but we haven't. Kind of a waste. Oh well. We'll try again next week.

Kicking cancer's BUTT

Sorry if this sounds a little crass. I read recently that an especially spirited A.L.L. family made a slogan out of this phrase and used it to celebrate every milestone along their child's journey (which recently ended with a ritualistic tossing of leftover meds into a lake, witnessed by close family and friends who were all wearing T-shirts that say "I kicked cancer's BUTT," or, "I helped my sister/cousin/friend kick cancer's BUTT.") Fantastic.

We are having one of those days. Dayssi's labs this morning showed that her counts have already recovered. She does not need any blood transfusion today and her ANC is 1200, which is within the normal range. She has been tired and is sleeping a little extra, so I know her body is still feeling the effects of all of that chemo. But her blood is in good shape.

Next Tuesday, on Halloween, Dayssi will start what should be the final phase of her treatment. It is called Long Term Maintenance. She'll have a lumbar puncture to inject some methotrexate, five days of steroids, plus one nightly and one weekly pill. This cycle will repeat every three months until, barring a relapse or some other significant complication, July 2008, at which point she will be Off Therapy. Then we watch and wait for another two years, and if there is no relapse, she will be considered "cured."

Dayssi is a little butt kicker. But you already knew that.

India Lost a Tooth

I am happy to report that this is the big news in our house right now. India lost her first tooth on Saturday night while eating a banana before bed. We never found the tooth, so we assume she ate it with the banana! India burst into tears after realizing she had swallowed it, for fear that the tooth fairy wouldn't come. But we left a note for the tooth fairy, explaining. And she came, and left some money! India and Dayssi were both thrilled. Dayssi is still looking under India's pillow now and then to see if anyone is there.

Subtext: Dayssi is fine. She is full of energy and has no fevers. She has had a bad sore in her mouth, which apparently comes from her low counts, which somehow break down her mucous membranes. It hurts when she forgets to chew on the other side. So, thank goodness there is only one sore. Tomorrow we have blood work and we'll find out of her counts are on the upswing yet. Not sure what to expect.

Oma and Opa came from New York to visit over the weekend. The girls had a great time and were sad to see them go this morning.

Jim, India and I got our flu shots on Sunday. It was insane -- thousands of (medically high risk) people standing for hours in packed stairwells at the medical clinic. There were elderly women holding on to one another and folks with walkers, just standing, standing, standing. And it was disorganized, people were angry and fighting about their respective places in the line. At the time we were there it seemed like about a 2 1/2 hour wait for a shot. I can't imagine what went wrong logistically, but it was seriously frightening.

With the concentration of people and lack of ventilation, I am sure that it was one of the most dangerous places we've had Dayssi in the past six weeks. After waiting for about 45 minutes, someone, whose voice I did not remotely recognize, opened my mouth and asked a health care worker with a badge to help us get Dayssi out of there. We were moved to the front of the line.

Tonight is my last night of teaching. Fantastic students, as usual, and I will miss the weekly dose of their intelligence, idealism, charisma, and love of life! It has been a breath of fresh air.

More on Giving Blood

Our super-hero friend Jennifer once ran a bone marrow drive and tells us that the Red Cross is a great way to go for giving blood because you can also be included in the National Marrow Donor Program (NMDP). Bone marrow transplant is the treatment of last resort for leukemia kids (usually not necessary if chemo does the trick), so with any luck Dayssi will never need one. But there are many, many kids (and adults) with leukemia who do.

Here are links to the red cross.

HYPERLINK http://www.marrow.org/ http://www.marrow.org/
HYPERLINK http://www.redcross.org/ http://www.redcross.org/

Thanks J!

TO GIVE BLOOD

A number of you have expressed an interest in giving blood. To make this a little easier here is a website that lists the locations of local blood mobiles this month (San Francisco Bay area).

http://membersforlife.org/stanford/mobilesch/search.php

You can also schedule a time to donate at the Stanford blood center (see above site), or, I assume, at your local medical school.

Thank you.
Deb

Crash

Dayssi's counts have officially crashed. We went to the clinic for her weekly blood work this morning and I could see the nurses expected it. "She looks pretty pale," sang the nurse as she led us into the exam room. And she does. She has what the nurses affectionately call "white lips," which refers to the monotone grey of an anemic child's face. They called me an hour after labs with the results. Practically no hemoglobin, and so few white blood cells that they don't even count the neutrophils (infection fighters). I think that qualifies as an ANC of zero. Her platelets are still in the ok zone.

So what do you do when your kid is grey, with blood that is less useful to the body than beer? Transfusion. We went back in to the hospital around 1:00 and they gave Dayssi a big bag of blood. "We're going to make you pink!" exclaimed the transfusion nurse. And, they did. By the time we left, at 5:00pm, Dayssi's lips were red and her cheeks had a little flush going. She looks better. And it really perked her up, although I hadn't really noticed that she was flagging. The nurse told me that if one of us (meaning, an adult) had hemoglobin as low as Dayssi's we wouldn't even be able to stand up. Meanwhile, Dayssi went to dance class this morning before we learned the results of her labs.

So that's where we are. Still no fevers, thank goodness.

Tonight Dayssi will eat the final trace of delayed intensification, the one thiaguanine pill remaining in the bottle. She ate dinner late so I'll have to wake her to give it. Then we start two weeks off therapy. I don't know how long a blood transfusion lasts, but I doubt this one will carry her through the next two weeks. So I suspect there'll be at least one more. And her platelets could still crash, which would require their own transfusion. Dayssi also had two transfusions when she was first diagnosed.

So many people have reached out to us in so many ways in the last six months, and we are very grateful. But for anyone who is still looking for a way to help, I have finally thought of something: donate blood.

Dayssi Turns 3

Great, great day.

Superstitious

I am starting to feel a little nervous about how well everything seems to be going. We gave Dayssi her last dose of Ara C for this week, this morning, and she is acting like she is perfectly fine, strong, healthy, like her body is not under any kind of attack. I know this is a ridiculous interpretation but we were expecting this past five weeks to be a lot worse than they have been. I don't know where Dayssi's counts are and one of these days we're going to get scary news on that front. But for now, thank you, she does not appear to be in any kind of imminent danger.

This feels like a reckless admission. Like I might actually be punished for wishful thinking, for failing to worry enough, for rejecting the gravity of our situation, or for forgetting to thank whomever is responsible for our current (relatively) good fortune. And I am puzzled by this kind of thinking, by me. Who exactly would punish me? Neither Jim nor I has any first hand experience with belief in God -- no one who raised us believes in any public or systematic way. Yet, I am finding it is nearly impossible to go through this experience without looking up, on a regular basis, to ask why, or to say thanks, or to beg for help, or for mercy. It feels foolish to me, but I don't know what else to do. There is no one on this earth who can tell us why, or offer any promises. But this does not stop me from wanting them.

Another Quick One

Chugging along. Dayssi spent a big day at the hospital today (10am until 7:45 pm) starting the second half of delayed intensification, which involved administration of four chemo drugs, one in the spine under general anesthesia, the other three of which are new. It is my understanding that one of them (the dreaded Ara C shot, which it turns out does not have to be given as a shot) is really hard on the stomach, and that we are likely to have some vomiting over the next two weeks. Many families tell us also that anyone who had hair up until this point tends to lose all of it now.

But today Dayssi did great and she went to bed tonight feeling fine. We decided to leave her port accessed for the next four days so that we could administer the Ara C intravenously without poking her. And actually, they did the first dose for us in clinic today, we'll do two at home this week, and they'll do the fourth at the hospital on Saturday, before de-accessing her (taking out the line). Same drill for next week. So, as long as she doesn't dislodge the thing while she has it in, and as long as we are careful about keeping everything sterile, this should be easier for all of us.