Bumpy But Safe Landing

We are at home and all is well, medically speaking. Dayssi's counts are still down so we'll be laying low for the next week or so, hiding out from rogue germs. Dayssi was thrilled to leave the hospital but India is not sure she wants to give up any turf. Upon our arrival there were lots of fightin' words and some crying, but right now both girls are in their respective rooms quietly enjoying their space.

Our release was also kind of abrupt. After telling us that we wouldn't be released until after 1:00pm today, the nurses basically booted Candy and Dayssi out of the hospital room at around 11:45 today. Poor Candy had to pack our room by herself (I was leisurely retrieving India from school) and wait for me with Dayssi and all of our stuff in the family kitchen for over an hour. Kinda rude if you ask me. But then, no one asked (:-)

Crafty Dayssi and the M&M's

Seems to me that Dayssi is pretty much back to her old self. While Deb and India were up in the playroom, she alternately cajoled and berated me into getting her a “treat.” These were M&Ms -- and the new white chocolate kind no less. Then she proceeded to ration them out one at a time, but roughly in the proportion of “5 for me and 1 for Daddy.” When I protested, she frowned and suggested, in not so many words, that I was lucky to be getting any. Trying my hand at what I imagine to be child psychology, I sulked a bit. This got me a hug, a crafty smile, and an “I love you,” but no M&Ms. A little later Dayssi taunted me by sticking out her tongue with an M&M on it and daring me to try to snatch it with my tongue, but knowing I couldn’t because of the possible exchange of germs – though I don’t suppose she was thinking very much about directionality…. She’s clever that little one. But just wait until her ANC goes back up, I’ll slurp those M&M’s off her tongue faster than she can charm an oncology fellow.

On the mend

Dayssi has not had any fever for over 24 hours and they are trying to send us home! Her ANC needs to hit 500 for us to get sprung. This morning she is back at 360 after bottoming out (we hope) at 220 yesterday. We took a chest x-ray this morning and that will have to look good also; we haven't heard yet about the result. But everyone assumes that the infection is under control and it is just a matter of waiting for her immune system to bounce back.

Thanks for the support!

A little pneumonia

This will be quick -- Dayssi was admitted to the hospital on Saturday afternoon with a little pneumonia. I say "a little" because the doctors are not terribly concerned about it. It is a very small infection in the right lobe of her lung. She woke up with a fever on Saturday, no other symptoms, and the doctor hesitated before asking us to bring her in to the ER because her counts were so high on Wednesday. It is a good thing we did because a chest x-ray revealed the pneumonia and we were able to get a jump on treating it. And, Dayssi's ANC plunged from 2800 (normal range) on Wednesday to 800 (just below normal) on Saturday, to 300 (!) (neutropenic) on Sunday. It appears to be a normal dip in the chemotherapy cycle but it is kind of startling how fast it can drop. Dayssi is off chemo until her ANC comes back up to 75o. This morning she was at 360.

Dayssi feels and looks great, and none of us are terribly stressed at the moment. The doctors and nurses chuckle and look perplexed at how perfectly healthy she seems. She's taking 3 intravenous antibiotics and they seem to be helping -- already she is coughing a little, a sign that the infection is loosening up.

Not sure when we'll be released, no one has even mentioned it yet. I think she has to go for at least a day without fever and they'll probably do another chest x-ray beforehand. We will keep you posted.

Skin in the game

I don't know how many people are reading this blog, but I suspect that only a few of you will appreciate the significance of these photos. For those who are incredulous, there is nothing wrong with your eyes. That is Deb riding on a roller coaster.

For those of you without context for the meaning of this event, suffice it to say that only 10 minutes before this shot was taken, I said to Jim that I would not ride on any roller coaster, ever, and that I would be perfectly happy to go to my grave without ever having done so. I'm a big chicken when it comes to dropping, falling, swinging, racing, flying or anything else that is designed to create the sensation of your body leaving your soul. I've been, off and on, a frightened flier -- some of you might remember the story of how I threw my arms around a stranger and cursed in his ear while landing a small plane in Bozeman Montana during a thunder storm.

Those of you who know Jim well will appreciate the irony of his having chosen to spend his life with someone like me. Jim has a serious need for speed and he likes to induce terror, thankfully, mostly in himself, although lately the squirrels (and a now deceased king snake) who think they live on our property have fallen prey to his wrath. Jim has always thought of my distaste for amusement parks as a kind of minor character flaw, and one that, with the right kind of encouragement, could be corrected.

Until Saturday I was sure he was out of his mind. And then, while standing with my family, who were waiting in line to ride the kiddie roller coaster at Great America, with my girls jumping up and down in anticipation, and begging me to go with them, all of that changed. What right do I have, I reasoned, to refuse to do something that scares me, when I ask my 2 1/2 year old every week to come with me to the hospital and cooperate while strangers (now mostly friends) poke and prod her, give her poisons, make her wear masks and breathe sleepy air, and draw blood from her chest while she is watching? The least I can do is get my ass into the seat next to her on the damn kiddy roller coaster!

As you can see from the photo, I was definitely scared. But it was fun, even worth it, perhaps, given how I've felt since. It is one of the only beautiful things about having a child diagnosed with cancer that you get a chance to revisit how you are living your own life and put some more skin in the game.

On the day Dayssi was diagnosed with A.L.L. and we were admitted to the pediatric oncology ward, I bumped into an acquaintance whose child also has cancer, who happened to be in a room down the hall. When I told her about Dayssi she looked at me with tears in her eyes and told me that there are wonderful things that can come out of this journey. Even at that moment I understood that what she was saying had to be true. When your child is diagnosed with cancer, you feel trapped, forced into a house of horrors with no doors or windows. At the same time, you find yourself on occasion, in spite of yourself, feeling free. Priorities become clear. Self imposed responsibilities fall away effortlessly. You spend more time in the moment, loving and being loved by family and friends, and less time thinking about where you have to be next. You take your kids to the fireworks even though it might be too loud, and you might have them out too late. You have breakfast with your husband even though work is waiting. You take your own health and well being seriously because, for the first time, they seem important. And you ride the roller coaster.

Interim Maintenance

We began Interim Maintenance today, without a hitch. Dayssi's counts were high enough to give her new doses of old chemos plus starting her on new drugs. We don't know exactly what her counts are -- the nurse forgot to give us our copy of the labs. We know Dayssi's ANC is above 750 or we wouldn't have started new chemo medications today. But it is probably below 1000. So, continuing to fall, below what is considered normal, but not yet neutropenic.

While at the "hostibal," Dayssi acted thrilled to see her friends the nurses -- she was silly and super outgoing with everyone in sight, including Rita, the hospital's well-trained pet dog, Rita's trainer, and a little girl in the next room who was feverish and had come in to receive IV fluids. Dayssi played chase with Dr. Dahl in the clinic, giggling and galloping after him as he pretended to run away from her. We didn't have an official appointment with him today but he stopped and visited with us for a while, was happy to see her looking so well, and said he could not imagine how she has kept so much hair. She has lost a lot at this point, but, as many of you will recall, she had a ton to begin with. Our friend Karen sent us pictures today that were taken in April, just a month before the diagnosis. Dayssi's hair really was a sight to behold. Anyway, she was chatty and playful for the entire visit, even as her beloved nurse Kim administered the chemo to her port and then proceeded to remove the big bunch of bandages and the access needle that was stuck in there yesterday and left in overnight so that she wouldn't have to be poked again today. Dayssi usually hates having tapes and bandages removed, and I have to hold down her hands and feet while she tries to fight off whoever is working on her. Today, as usual, she was dreading being de-accessed (she said on the way over, "I think we'll just leave it in today, mommy"). But after we got to the clinic, Dayssi walked over to Kim and sat with her while I talked to our nurse practitioner, Tamara, about all of the new medications. As I glanced over my shoulder I could see Dayssi "helping" Kim, pushing the chemo into her PORT with her own little hands, and helping to hold up her shirt, pull off the bandages, and remove the needle without a whimper. I did hear this much of their dialogue:
Dayssi: "Are you going to take that out?"
Kim: "Yep, in just a minute."
Dayssi: "I'm scared!"
Kim: "You are? But you don't really want to run around with this in here all the time, do you? If we take it out then you can take a big bubble bath and go swimming. We're almost done!"
Dayssi: "Then I'll be FREE!"

It was quite the smorgasbord of drugs today. Dayssi received a push of vincristine (this is the drug that makes her jaw hurt, and her tummy hurt, for a few days after getting it, and it also makes her walk and run kind of funny). After returning home, we started a five-day course of steroids (dexamethasone, the original and still worst "yucky" medicine), plus the minty Zantac that goes with it (another contender for most yucky), and a new oral methotrexate, which Dayssi will take one night per week for the next two years. The methotrexate dose consists of 5 small pills, and also requires an empty stomach. So, after returning from the hospital, Dayssi had a drink with extra poo poo medicine (to stave off another undesirable effect of vincristine), dinner (Tacos!), some yogurt with steroids (dexamethasone), Zantac and grenadine. An hour later she had the 5 methotrexate pills, which she took by carefully placing each inside its own raspberry, popping into her mouth, chewing and, on occasion, swallowing without even feeling the pill! Piece of cake. An hour later, she had her regular 6MP pill, which she'll continue to take every night at bedtime for the next 2 years. This is the one that makes her throw up every morning but she doesn't know that, and doesn't mind taking it.

We were pretty stressed about all of the changes, but Dayssi was not. There was little struggle at all this evening. The hardest part was the steroids, but we discovered yet another innovation that seemed to help: Dayssi took the yogurt with a Tic Tac in her mouth, and enjoyed the challenge of trying to swallow the yogurt while keeping the Tic Tac on her tongue. In a few days, when Dayssi's jaw is aching and her tummy is hurting, it is going to be hard to get that yogurt into her. But we've done it before, and it is only 5 days on yogurt this month. Next month we'll have another 5 days.

India saw her therapist today and we think it went well. We spent about 10 minutes altogether in the office and then Dr. Larsen asked India if it was ok for me to leave them alone. She looked at the two of us like she thought that was kind of a fun idea, so I left them alone. At the end of the session, when I rejoined them, Dr. Larsen reported that she and India agreed it would be good for India to come and visit again. Score! So we're going back on Monday. India also started her new Capoeira class (Brazilian dance/martial arts) on Tuesday, and she really liked it although I thought it looked hard! She did complain afterward about her arms and legs hurting. But she is eager to go back.

Party girls

All is well. Jim's 2-week executive ed program for non-profit leaders in the arts ends tomorrow. It will be nice to see him again (:-). It seems to have gone well, as usual, and I even managed to squeak out a couple of days of teaching, as though things are back to normal. It was good to throw myself into work but was also somewhat surreal, watching myself act like a professional who isn't thinking about her kids 24 hours a day.

The girls are doing fine. Dayssi is sleeping in her own bed and, with the exception of last night, when Jim heard talking and found her sitting in her chair with a book at 2:30am, she has been sleeping through the night. India is waking off and on, calling "mama mama mama" in a panic, but then she falls back to sleep without much coaxing and doesn't seem to remember waking up or having had any nightmares. Being the sleep freak that I am, I attribute these night terrors more to exhaustion than anything else and I suspect that once I can get the girls to bed earlier again that this problem will resolve.

We've had a lot of late nights as we are taking advantage of every possible opportunity to party while Dayssi's counts are good and she is feeling healthy. The fireworks were a lot of fun, although they didn't start until 9:45 pm and we didn't get home until 11:00pm. We heard the New Orleans Preservation Band play jazz for a few hours beforehand and enjoyed watching Dayssi entertain the crowd by dancing animatedly on my lap while facing those sitting behind us whowere, on occasion, in tears from the hilarity of it. The next night, on July 4, we attended a barbeque at Liz and Reed's, which also ran a little late as we couldn't bring ourselves to separate from them. We are, as I like to say to the girls, ka-pooped!

I met with India's prospective therapist yesterday and she suggested that while many of India's current behavioral quirks might be attributable to her responses to Dayssi's illness and its ramifications, many are also developmentally appropriate, and some are consistent with sleep deprivation. I think I've mentioned before how difficult it has been to get the girls in bed at a reasonable hour these days, especially with the 6MP which has to be given at bedtime, but 2 hours after eating or drinking. It gets late. Next week India and I will go together and India will get to meet Dr. Larson. I'm looking forward to hearing the assessments of both parties and am going to feel very relieved to have the support of such a warm and experienced professional.

On Friday Dayssi has her first dentist appointment with a dentist who specializes in children with health problems. She'll be taking a big dose of antibiotics before the cleaning. We've received a couple of mailings from the dentist already to prepare Dayssi emotionally for the visit, and at some point soon we are supposed to receive a Dentosaurus book in which, among other things, she gets to record each of her visits. I hear there are lots of toys and other distractions at this office, including a DVD screen ABOVE THE CHAIR where she'll have her cleaning. Shouldn't all dentists have that??

We start Phase III of Dayssi's treatment (interim maintenance?) on Tuesday of next week. Jim checked the protocol and he thinks we'll stay on the 6MP pills for this phase, and introduce an oral methotrexate once per week. This will be confirmed by our nurse practitioner later today. Dayssi's counts are still decent -- her ANC (indicator of immune system strength) was 1600 last week, which is still within the normal range, but is also way down from about 5000 the previous week. So we are headed downward, as expected, because the chemo is taking out her immune system. It makes us anxious to move into this territory but it is par for the course. Soon we'll be washing hands obsessively again and keeping Dayssi away from crowds. And we'll be hoping to keep the serious infections at bay.

Cold Beach

This morning we went to the beach with Sharon, Jim, Cole and Edie. It was a little colder than we expected at 8:30am, which was a bit of a bummer, but it was NOT sunny, which was a plus. We had three kites in the air at once and there was lots of digging going on. As you can see, it was quite a love fest.

Tomorrow afternoon, Dayssi has labs, but NO procedure on Tuesday as far as we know. And tomorrow night, fireworks! We've never been -- it has always seemed too late and too loud for our us (probably just for me actually) -- but this is our year. The girls are beside themselves with antipation. Stay tuned.