India and Dayssi have been bonding of late. Here are some pics from thier sleepovers and first day at school together.
Thursday, June 29, 2006
So Happy Together
India and Dayssi have been bonding of late. Here are some pics from thier sleepovers and first day at school together.
Monday, June 26, 2006
Growing up, despite everything
Not much to report from the front lines these days. Dayssi has completed her course of antibiotics and she appears to feel great. We've read that kids with cancer tend to regress, and we've had some of that (we're back to using a pacifier full time) but we are encouraged byDayssi's recent reaching for developmental milestones. Without any suggestion from us she has decided to start working on potty training, and she woke up one day last week and announced that she was ready for a big girl bed. We've made progress on both counts. Dayssi hasn't worn an actual diaper for over a week now and she alternates between underwear and pull ups, using the potty successfully during the day and actually waking sometimes to go during naps. We've rearranged her room so that it now contains a crib and a big girl bed, and although she hasn't yet slept in the bed she is, finally, back in her crib. Since returning from the hospital in May we were letting her sleep with us (I can hear all of you who remember my sleep-training obsession howling out there) but as of last night we have our own bed back. We miss her little soft warm body in there but do not miss sleeping with her scratchy tulle ballet skirts (which she has been wearing all day every day and most nights). India helped with the transition, offering to sleep in the new bed in Dayssi's room with Dayssi in the crib. It was a real joy to see them comfort one another last night; they both seemed to love being in the same room and nodded off peacefully facing one another. It was the easiest bedtime since Dayssi came home from the hospital. And, the girls played so much and so nicely together this weekend that I was reluctant to leave the house! We are still waiting for parts of the bed apparatus -- there is an actual frame coming from Ikea and a very romantic princess net as well. We've been working on India's room too -- recently hung some new art work, got a new duvet and sheets, and made some new space for a little desk and chair which she won't need for a while but which she thinks are very cool and grown up. We'll try to send pictures soon.
India is still fragile and stressed. She is overtired, and she is anxious; she now knows what the word anxious means and uses it correctly, often. She has been waking up at night terrified, insists she does not want to go to kindergarten (has she ever said that she didn't want to do anything before?) and has been fixated on recounting an unfortunate incident from our past (over a year ago) when she got stuck in an elevator by herself. We've talked with our pediatrician about India and how best to help her, and we now have the names of a few counselors who specialize in treating siblings of young cancer patients. The other night when we were talking about her feelings I told her that when daddy and I feel anxious we sometimes see a special doctor who takes care of people's feelings and I asked her if she would like to see a doctor like that. She smiled and nodded. So this will be a new adventure for India starting soon.
Tomorrow we have a spinal procedure scheduled to inject some more chemo into Dayssi. It is the third weekly spinal procedure since we started phase 2 of treatment, and after this one we get a break for a while. It is a grisly procedure when you think about it but she sleeps through them and does not seem to be aware of them, only worries about the band-aids that mysteriously appear on her back and when they will have to come off. There'll be some new challenge, drug wise, coming soon I'm sure, but for now we are enjoying the relative ease of familiar drugs adminstered at familiar times that evoke little resistance.
India is still fragile and stressed. She is overtired, and she is anxious; she now knows what the word anxious means and uses it correctly, often. She has been waking up at night terrified, insists she does not want to go to kindergarten (has she ever said that she didn't want to do anything before?) and has been fixated on recounting an unfortunate incident from our past (over a year ago) when she got stuck in an elevator by herself. We've talked with our pediatrician about India and how best to help her, and we now have the names of a few counselors who specialize in treating siblings of young cancer patients. The other night when we were talking about her feelings I told her that when daddy and I feel anxious we sometimes see a special doctor who takes care of people's feelings and I asked her if she would like to see a doctor like that. She smiled and nodded. So this will be a new adventure for India starting soon.
Tomorrow we have a spinal procedure scheduled to inject some more chemo into Dayssi. It is the third weekly spinal procedure since we started phase 2 of treatment, and after this one we get a break for a while. It is a grisly procedure when you think about it but she sleeps through them and does not seem to be aware of them, only worries about the band-aids that mysteriously appear on her back and when they will have to come off. There'll be some new challenge, drug wise, coming soon I'm sure, but for now we are enjoying the relative ease of familiar drugs adminstered at familiar times that evoke little resistance.
Tuesday, June 20, 2006
Sunday, June 18, 2006
Listening to Keflex
Dayssi's UTI appears to be on the way out, no match for the Western medicine being practiced at LCPH. I have to say, this experience is having quite an impact on my appreciation for what can be accomplished with some hard science and the use of pharmaceuticals. You start to feel like the doctors can fix anything, which I guess explains Dr. Dahl's swagger. I wonder how many children he has rescued from the brink of oblivion.
I am also reassured about the critical role of psychology in all of this, particularly in Dayssi's illness and treatment. Her discomfort, so far, has been all about feeling out of control. It is the only part of this (besides the series of pokes she received in initial emergency room visit) that has really bothered her. Jim and I are teased often about the plight of our poor children, having two psychologists as parents, but I am so glad right now that we can appreciate the psychological aspects of what is going on. We try to manage her expectations and give her choices whenever we can, and it really seems to help. And sometimes we just refuse to do what makes life easier for the doctors and nurses when it makes life easier for Dayssi. For example, we now refuse to put Dayssi in hospital pajamas because it freaks her out. She goes into the OR either naked, in a diaper, or in her own pajamas. The doctors are pretty understanding about this in general, the nurses are not always as easy going, but we are now insistent about letting her choose what she wants to wear. And typically, she rides happily into the OR on her gurney and sits quietly with us until she is asleep (usually they let us go in there with her, depends on the procedure).
We spent a good part of every single day at the hospital last week, between Dayssi's routine stuff and then treating and checking up on her infection. The oncology clinic is very aggressive about everything and I like it. After our emergency room visit I called to check in with our nurse practitioner and, even though Dayssi's counts are normal, they brought us in for a bunch of checks just to make sure the UTI was the only infection in Dayssi's body. Her little PORT has been getting a serious work out. It frightens her to have it accessed but it doesn't seem to hurt, at least not when we can get the anesthetic cream on early enough (an hour is good, less than 30 minutes not so great). They tell me in the oncology clinic that after a while the kids are entirely unaffected by having the PORT accessed. I'm looking forward to that.
We're doing ok with the new drugs but, just like our first venture with the steroids, the pattern with new meds seems to be, initial curiosity and acceptance, followed by rage, fury and resistance to the point of having to be forced, to finally finding a bunch of ways to feel in control of the situation and then accepting the meds as a necessary but only slightly annoying part of life. It can be fun to watch how resourceful Dayssi is in terms of her ability to gather her wits and figure out how to feel like she is choosing to do this. She is very deliberate in her choices of who will give the medicine, in which room, with which kind of dropper (right now she is hooked on a teeny tiny dropper from a bottle of infant tylenol which takes forever to use since we have to fill and refill it many times to get her a single dose). We are struggling with the pill, which she only took in pieces twice. We are now crushing it and mixing with cranberry juice concentrate, but it tastes gross even with the concentrate and the more you add the more she has to take. Tomorrow we'll try what the pharmacist recommended, which is to crush the pill with a drop of water in a spoon, then add just enough syrup to fill the spoon, suck it up in a dropper and try to administer in one squirt. I don't think the baby dropper is going to do it, but we'll see. She might come around to the idea of only one squirt.
We are seriously sleep deprived right now. Since Wednesday there have been a lot of hours every night that both of us have had to be awake. While Dayssi was feverish she woke often, uncomfortable, but didn't want to take any Tylenol (which she used to love). And we've had to wake her to get her to take her antibiotic too, which you can imagine is really fun. Sometimes it takes over an hour just to get the Tylenol in her, before the antibiotic, including watching a movie on Jim's portable DVD player and spending time in three rooms. BTW, for any of you whose kids don't like to take Tylenol, Jim bought some little dissolving tablets today and Dayssi liked them alot. If they are like the anti nausea meds she takes they dissolve in like 3 seconds. As she says, "It disappeared!" Anyway, we are hoping that with her UTI clearing things will fall back in to an easier rhythm. But we also feel like we are getting a realistic preview of what much of the next 3 years might be like. It was very hard this week, and she was actually in pretty good condition, relatively speaking.
Blah blah blah. That is the latest. A few words here about India: she is doing ok, worries about Dayssi with all the crying at medication time, but it seems to make her feel better when she can offer Dayssi something she wants.
Speakinawich, she is on my lap waiting for me to read her some books. Gotta go.
I am also reassured about the critical role of psychology in all of this, particularly in Dayssi's illness and treatment. Her discomfort, so far, has been all about feeling out of control. It is the only part of this (besides the series of pokes she received in initial emergency room visit) that has really bothered her. Jim and I are teased often about the plight of our poor children, having two psychologists as parents, but I am so glad right now that we can appreciate the psychological aspects of what is going on. We try to manage her expectations and give her choices whenever we can, and it really seems to help. And sometimes we just refuse to do what makes life easier for the doctors and nurses when it makes life easier for Dayssi. For example, we now refuse to put Dayssi in hospital pajamas because it freaks her out. She goes into the OR either naked, in a diaper, or in her own pajamas. The doctors are pretty understanding about this in general, the nurses are not always as easy going, but we are now insistent about letting her choose what she wants to wear. And typically, she rides happily into the OR on her gurney and sits quietly with us until she is asleep (usually they let us go in there with her, depends on the procedure).
We spent a good part of every single day at the hospital last week, between Dayssi's routine stuff and then treating and checking up on her infection. The oncology clinic is very aggressive about everything and I like it. After our emergency room visit I called to check in with our nurse practitioner and, even though Dayssi's counts are normal, they brought us in for a bunch of checks just to make sure the UTI was the only infection in Dayssi's body. Her little PORT has been getting a serious work out. It frightens her to have it accessed but it doesn't seem to hurt, at least not when we can get the anesthetic cream on early enough (an hour is good, less than 30 minutes not so great). They tell me in the oncology clinic that after a while the kids are entirely unaffected by having the PORT accessed. I'm looking forward to that.
We're doing ok with the new drugs but, just like our first venture with the steroids, the pattern with new meds seems to be, initial curiosity and acceptance, followed by rage, fury and resistance to the point of having to be forced, to finally finding a bunch of ways to feel in control of the situation and then accepting the meds as a necessary but only slightly annoying part of life. It can be fun to watch how resourceful Dayssi is in terms of her ability to gather her wits and figure out how to feel like she is choosing to do this. She is very deliberate in her choices of who will give the medicine, in which room, with which kind of dropper (right now she is hooked on a teeny tiny dropper from a bottle of infant tylenol which takes forever to use since we have to fill and refill it many times to get her a single dose). We are struggling with the pill, which she only took in pieces twice. We are now crushing it and mixing with cranberry juice concentrate, but it tastes gross even with the concentrate and the more you add the more she has to take. Tomorrow we'll try what the pharmacist recommended, which is to crush the pill with a drop of water in a spoon, then add just enough syrup to fill the spoon, suck it up in a dropper and try to administer in one squirt. I don't think the baby dropper is going to do it, but we'll see. She might come around to the idea of only one squirt.
We are seriously sleep deprived right now. Since Wednesday there have been a lot of hours every night that both of us have had to be awake. While Dayssi was feverish she woke often, uncomfortable, but didn't want to take any Tylenol (which she used to love). And we've had to wake her to get her to take her antibiotic too, which you can imagine is really fun. Sometimes it takes over an hour just to get the Tylenol in her, before the antibiotic, including watching a movie on Jim's portable DVD player and spending time in three rooms. BTW, for any of you whose kids don't like to take Tylenol, Jim bought some little dissolving tablets today and Dayssi liked them alot. If they are like the anti nausea meds she takes they dissolve in like 3 seconds. As she says, "It disappeared!" Anyway, we are hoping that with her UTI clearing things will fall back in to an easier rhythm. But we also feel like we are getting a realistic preview of what much of the next 3 years might be like. It was very hard this week, and she was actually in pretty good condition, relatively speaking.
Blah blah blah. That is the latest. A few words here about India: she is doing ok, worries about Dayssi with all the crying at medication time, but it seems to make her feel better when she can offer Dayssi something she wants.
Speakinawich, she is on my lap waiting for me to read her some books. Gotta go.
Friday, June 16, 2006
Blip
Just when you thought it would ONLY be good news here we have a very minor blip in the pattern. Dayssi and Deb spent the night in the emergency room on Wednesday because Dayssi had a fever and, it turns out, a urinary tract infection (ow!). Her counts are all normal so she'll fight this off like a normal kid, with a big honkin' course of antibiotics (every 6 hours for 10 days) on top of everything else. Poor kid.
She is out right now with Jim getting a bagel with cream cheese which we promised at 3am as a reward for taking a bunch of Tylenol and antibiotic when she was feverish, exhausted, and apparently nauseous (she gagged a few times BEFORE taking any medicine, so she also had to take an anti-nausea pill before all of that).
Anyway, nothing serious at this point, thank goodness.
She is out right now with Jim getting a bagel with cream cheese which we promised at 3am as a reward for taking a bunch of Tylenol and antibiotic when she was feverish, exhausted, and apparently nauseous (she gagged a few times BEFORE taking any medicine, so she also had to take an anti-nausea pill before all of that).
Anyway, nothing serious at this point, thank goodness.
Wednesday, June 14, 2006
pill shmill
The jello was a bust and Dayssi can't seem to get herself to swallow a pill but, amazingly, she doesn't seem to mind having pieces of 6MP tablets dissolving in her mouth. We had cut them into quarters and as she took each piece into her mouth she would swallow whatever was with it but the pill wouldn't go down. When we asked "Is it gone?" she simply shook her head, nonplussed, and showed us the pill on her tongue. We started giving her spoonfuls of frozen cranberry juice concentrate to wash it down and eventually she exclaimed (hands up, big eyes) "It's gone!" But I would have to say that she ate, rather than swallowed, the pills. Anyway, she took them, no problem, and she seemed proud of herself afterward. What a relief.
Tuesday, June 13, 2006
More good test results
Dayssi's MRD test result came back from St. Judes looking great: less than .1% of blasts in her marrow. This is equivalent to what you'd see in a normal healthy person. So we are now on the low risk arm of the treatment protocol. We had a long meeting with Dr. Dahl to discuss the results and whether we want to stay on the protocol, which entails random assignment of Dayssi to treatment condition. Before making the decision, Jim did a ton of research and I warned the doctor ahead of time so that he could prepare. Having had a few meetings with Jim already he knew what to expect. "I'd better study up!" he told me. Jim executed the classic Phills tete-a-tete and I would say that Dr. Dahl held up relatively well, barely breaking a sweat when Jim grilled him about the relative effectiveness of different doses of PEG aspariginase, and maintaining both his swagger and sense of humor for the duration. In the end, we opted to stay on the protocol, and were assigned to the standard treatment arm (Dayssi will not receive anything experimental). We are as comfortable as we can be with this outcome, knowing that the standard treatment is the best known treatment at present and knowing that we will not have to contend with additional uncertainty about side effects and outcomes.
Yesterday the fabulous nurses in the oncology clinic accessed Dayssi's new port with incredible ease -- she did not even seem to know that she was being poked in the chest. This morning we had a rougher go of it: the nurse preparing her for her spinal procedure was less experienced apparently and failed to hide the needle, and then missed the opening so that it had to be done again (luckily, next time under sedation while her other procedures were being completed). They used gas to put Dayssi to sleep this time and it seemed to go very smoothly. However, the doctors also forgot to remove the line from her port during the procedure, and it was taped down pretty tight, so Dayssi had to endure having it all removed while she was awake in the recovery room. She put up a pretty good fight but once it was over she dried her eyes and asked for chicken nuggets. And that was the end of that. There are good things about going through this kind of stuff when you are only 2.
Tonight we are back on chemo and we have to try some new pills (Mercaptopurine or 6MP). Jeepers creepers. They can't be given with milk products (no yogurt) and they have to be given on an empty stomach. We have the option of crushing them (but they are a biohazard, we have to wear gloves, and apparently they taste nasty) and mixing with a syrup of some kind OR trying to get her to swallow the pill (but she has to take 3 pieces of pill). We are going to try putting a piece in a jello jiggler tonight to see if she can suck it down without feeling it. She thinks it SOUNDS like fun, so that is a start. We'll let you know how it goes.
Yesterday the fabulous nurses in the oncology clinic accessed Dayssi's new port with incredible ease -- she did not even seem to know that she was being poked in the chest. This morning we had a rougher go of it: the nurse preparing her for her spinal procedure was less experienced apparently and failed to hide the needle, and then missed the opening so that it had to be done again (luckily, next time under sedation while her other procedures were being completed). They used gas to put Dayssi to sleep this time and it seemed to go very smoothly. However, the doctors also forgot to remove the line from her port during the procedure, and it was taped down pretty tight, so Dayssi had to endure having it all removed while she was awake in the recovery room. She put up a pretty good fight but once it was over she dried her eyes and asked for chicken nuggets. And that was the end of that. There are good things about going through this kind of stuff when you are only 2.
Tonight we are back on chemo and we have to try some new pills (Mercaptopurine or 6MP). Jeepers creepers. They can't be given with milk products (no yogurt) and they have to be given on an empty stomach. We have the option of crushing them (but they are a biohazard, we have to wear gloves, and apparently they taste nasty) and mixing with a syrup of some kind OR trying to get her to swallow the pill (but she has to take 3 pieces of pill). We are going to try putting a piece in a jello jiggler tonight to see if she can suck it down without feeling it. She thinks it SOUNDS like fun, so that is a start. We'll let you know how it goes.
Sunday, June 11, 2006
Saturday, June 10, 2006
Don't Worry. Be Happy.
Just an update. Turns out the red patch was not an infection, but just an irritation near the site of the LP due to the bandage. We were treated like royalty at the ER. Dr. Schiffman, the oncology fellow on call, had called ahead and we were whisked in right away. Overall, we spent more time on paperwork and flirting with Dr. Weiss than having our "boo boo" examined or treated. While waiting to be discharged, we passed the time watching the Little Mermaid in our room and then, a bit giddy with relief, went out (at 10 pm) to indulge ourselves on ice cream.
We are home now and going to bed; exhasted after a night of excitement.
We are home now and going to bed; exhasted after a night of excitement.
Haircuts etc.
We haven't blogged much about Dayssi's hair yet but we could have. Those of you who know Dayssi know all about the luminous golden ringlets that were kind of her trademark. What many of you don't know is that it is a big job to keep that kind of hair looking groomed -- challenging for both groomer and groomee -- and that May 9, the day of Dayssi's A.L.L. diagnosis, was the last day that anyone tried seriously to comb it out. In the past month it became kind of like one big dreadlock, and what to do with it became a stimulating topic of conversation for Jim and I, as well as a variety of curious observers.
Late Wednesday of this past week we agreed it should be cut, rather than wrestled with, especially considering the typical effects of chemotherapy on hair. We asked Dayssi whether she wanted a short hair cut, and when she giggled and nodded, we sped into action. I had an appointment at Juut in Palo Alto for myself on Friday, so I called right away and was able to book cuts for Dayssi and India at roughly the same time.
The salon was fantastic. I've always thought of Juut as a kind of snooty place but when I explained what had happened to Dayssi's hair they offered to comp the haircut, and put both Dayssi and India into the very kind and competent hands of a stylist-apprentice named Beth. Beth has great energy, she was very patient and gentle with both girls, and she she did an excellent job. India got an fantastic trim (her hair looked beautiful during the dance show today), and Dayssi got a really adorable little pixie kind of thing. I also got a nice pixie-ish haircut from a very sweet and talented stylist named Phil. Normally I wouldn't use this blog to promote a business but after how they treated us on Friday, I think they deserve it. BTW, for anyone looking for a stylist for your kids or yourselves: a haircut from Beth is very reasonable but a haircut from Phil ain't cheap.
We've had a great week and weekend. Dayssi off steroids is so familiar -- if she didn't look like someone else I would say she is just like her old self. It is amazing to realize how much the steroids affected her mood. She was very subdued while on them, occasionally smiled but almost never laughed, and was much less social than usual. We assumed that this was partially due to her illness and what she had been through. But it appears to have been largely due to the steroids. For the past five days she has been super social, giggling and laughing almost constantly, and playing like a regular almost-three year old. We'll be on steroids again in the near future, but for much shorter and more intermittent stints.
Today was India's dance recital and we all enjoyed ourselves there. Later we went to a neighborhood picnic, which was also a lot of fun. About an hour ago Jim took Dayssi in to the emergency room because one of the small wounds from the pokes on her back from Tuesday was looking red and irritated. I am blogging now to keep myself distracted, waiting to hear from him, hoping this will not turn out to be a big deal. She was not in pain today and did not have a fever.
When Jim gets home we'll update on Dayssi's wound and I will try to get him to post some hair shots as soon as possible.
More thanks: fantastic meals and gifts keep pouring in, as do the phone calls, emails, blog comments, and generous acts of support from close friends and family. As always, each gesture is a comfort. Thank you.
Late Wednesday of this past week we agreed it should be cut, rather than wrestled with, especially considering the typical effects of chemotherapy on hair. We asked Dayssi whether she wanted a short hair cut, and when she giggled and nodded, we sped into action. I had an appointment at Juut in Palo Alto for myself on Friday, so I called right away and was able to book cuts for Dayssi and India at roughly the same time.
The salon was fantastic. I've always thought of Juut as a kind of snooty place but when I explained what had happened to Dayssi's hair they offered to comp the haircut, and put both Dayssi and India into the very kind and competent hands of a stylist-apprentice named Beth. Beth has great energy, she was very patient and gentle with both girls, and she she did an excellent job. India got an fantastic trim (her hair looked beautiful during the dance show today), and Dayssi got a really adorable little pixie kind of thing. I also got a nice pixie-ish haircut from a very sweet and talented stylist named Phil. Normally I wouldn't use this blog to promote a business but after how they treated us on Friday, I think they deserve it. BTW, for anyone looking for a stylist for your kids or yourselves: a haircut from Beth is very reasonable but a haircut from Phil ain't cheap.
We've had a great week and weekend. Dayssi off steroids is so familiar -- if she didn't look like someone else I would say she is just like her old self. It is amazing to realize how much the steroids affected her mood. She was very subdued while on them, occasionally smiled but almost never laughed, and was much less social than usual. We assumed that this was partially due to her illness and what she had been through. But it appears to have been largely due to the steroids. For the past five days she has been super social, giggling and laughing almost constantly, and playing like a regular almost-three year old. We'll be on steroids again in the near future, but for much shorter and more intermittent stints.
Today was India's dance recital and we all enjoyed ourselves there. Later we went to a neighborhood picnic, which was also a lot of fun. About an hour ago Jim took Dayssi in to the emergency room because one of the small wounds from the pokes on her back from Tuesday was looking red and irritated. I am blogging now to keep myself distracted, waiting to hear from him, hoping this will not turn out to be a big deal. She was not in pain today and did not have a fever.
When Jim gets home we'll update on Dayssi's wound and I will try to get him to post some hair shots as soon as possible.
More thanks: fantastic meals and gifts keep pouring in, as do the phone calls, emails, blog comments, and generous acts of support from close friends and family. As always, each gesture is a comfort. Thank you.
Tuesday, June 06, 2006
Day 29: The PORT is in
Today was a big day for Dayssi in the operating room. She had her PORT-A-CATH implanted, her PICC line removed, a bone marrow aspiration for Day 29 biopsy (this specimen will be sent to St Judes Hospital for the very important Minimal Residual Disease prognostic test), and a spinal tap to inject some more methotrexate into her spinal column.
She came through it all just fine and we felt very supported by the surgeons, nurse practitioners and anesthesiologists who came by a number of times before, during, and after the procedure to update us on her progress. It was another day of feeling lucky to be at Lucille Packard Children's Hospital.
Dayssi is off steroids as of last night, but it will take another few weeks for the drugs that are already in her system to work their way out. This is good in the sense that they will be continue to track down and eliminate any remaining leukemia cells while they are in her body. So, while we were looking forward to closing the "open all night" restaurant, it looks like we will have to wait for a while to send the staff home.
The labs from yesterday are in and looking good. Her ANC (a key indicator of immune function) was way up to 2000, well into the normal range, as were her platelets at 343.
We saw Dr. Dahl today and he was at his most swaggering "We are kicking some serious cancer butt” self; and tonight, so are we.
She came through it all just fine and we felt very supported by the surgeons, nurse practitioners and anesthesiologists who came by a number of times before, during, and after the procedure to update us on her progress. It was another day of feeling lucky to be at Lucille Packard Children's Hospital.
Dayssi is off steroids as of last night, but it will take another few weeks for the drugs that are already in her system to work their way out. This is good in the sense that they will be continue to track down and eliminate any remaining leukemia cells while they are in her body. So, while we were looking forward to closing the "open all night" restaurant, it looks like we will have to wait for a while to send the staff home.
The labs from yesterday are in and looking good. Her ANC (a key indicator of immune function) was way up to 2000, well into the normal range, as were her platelets at 343.
We saw Dr. Dahl today and he was at his most swaggering "We are kicking some serious cancer butt” self; and tonight, so are we.
Friday, June 02, 2006
More dancing
We've been making the most of Dayssi's good counts, running around to as many regular activities as we can handle. Yesterday was India's dress rehearsal for her upcoming dance recital. We made it to class, on time, with all of the pieces of India's costume, and with a complete picnic for Dayssi. I remembered my new cell phone/camera (thank you Jim!) but, alas, couldn't get it to work. So these pictures are courtesy of Annika's mom Susan Chao. Pretty cute aren't they? Susan is trying to send a video clip from the rehearsal which I will also try to post. The show is on June 10 and we are bringing a big cheering section. Apparently no photographs or video taking allowed.
Today we went to Dayssi's gymnastics class, at her request, but she wasn't interested in doing any gymnastics. We put on her pink leotard and said hello to the teachers and her little participant friends. But she stayed in my arms and it seemed to satisfy her for today. She said that next week she wants to come again and to wear her black leotard. If counts allow, we will.
We also picked up India from pre-school and watched her acting out the song "I'm a little green frog . . ." with some classmates and the origami frogs they had made. On the way out we bumped into our friend Sharon and her daughter Edie, who were going to pick up Edie's brother Cole from kindergarten. We followed them to the International Day celebration at the elementary school (which is right next door to our pre school). The celebration was pretty exciting: when we arrived all of the kids were on the playground, and there was an announcer with a loud speaker calling out the names of different countries. As each country was named, all of the kids from each place ran up to the front of the crowd, took up their nation's flag and fell into a parade, kind of like at the Olympic ceremonies. It is a very international school and some of the kids wore native costumes, so it was pretty colorful. India marched hand in hand with Cole behind the American flag (sorry Jim!), and Dayssi stayed in her stroller but urged me to "catch up with Cole and India," so we ran around behind them. Finally we went to India's gymnastics class, and then we went home and collapsed.
The hospital called today to schedule the PORT surgery, so barring some kind of illness this weekend, it will be inserted on Tuesday (could be Wednesday, I didn't actually talk to anyone there yet). We will keep you posted.
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