Dayssi's counts are still too low for chemo so we are off another week. Her ANC is 476, up from 300, but not 500, which is the "ok" criterion. No cause for concern. This is normal for ALL kids, who will typically have 2-3 episodes of low counts due to viruses, etc. during maintenance. Dayssi is producing a lot of lymphocytes (?), which indicates she is fighting a virus. And she has a cold and a cough. The overall pattern of blood work shows also that Dayssi's platelets and hemoglobin are normal, which is important for ruling out relapse. But we have no reason to think that is going on anyway at this point. I learned recently from parents whose kids have relapsed, and who are reading all of the relevant literature, that relapse is rarely diagnosed from bloodwork, it tends to manifest in terms of the same physical symptoms as the initial diagnosis, and is then only confirmed in the bone marrow. So, my advice to those of you who are feeling panicky is: breathe.
Jim returned this weekend from his annual ski trip with college roommates. The girls and I had a bunch of parties while he was away, including our favorite baby's first birthday party, a lovely grown-ups only dinner party, a ladies-only 40th birthday extravaganza for one of those fabulous friends I was writing about earlier, and a trip to the doughnut factory!!
So it was a busy weekend with many reasons to celebrate. But I spent most of the weekend with a lump in my throat, knowing that two young children whose families I barely know were losing their respective battles with cancer while we were playing. Catie was fighting a brain tumor and, in prepration for a bone marrow transplant, caught a fungal infection that took her life on Friday morning. Donovan was diagnosed with a rare form of infant leukemia shortly after birth, and after nearly two years of trying every treatment imaginable, he finally lost his battle on Saturday night. I have no right to call these people my friends, but having followed their stories, sent messages of support, and witnessed their courage, humor, hope, love and ultimately, their loss, I care for them as though they are my friends, and I am heartbroken.
Monday, January 22, 2007
Tuesday, January 16, 2007
A week off chemo
Dayssi did not make counts today, so we are off chemo for a week. Her ANC is around 300, so she is neutropenic, and we won't send her back to school until it is closer to 1000 (1500 is at the low end of normal). Probably she is fighting a bug -- India missed school on Thursday and Friday last week because of a cold and sore throat, and Kirsi, who stayed home with India last week, has been out every day so far this week with the same thing. Dayssi was full of energy today, although by bedtime she was starting to unravel, and her nose was running a little. As long as she doesn't get a fever we should be able to ride this out at home. Fingers crossed.
The port comes out on January 30, assuming counts are up and Dayssi is healthy. Then we'll have to adjust to having blood drawn from inside the elbow. Whenever I talk to Dayssi about this she says " But I don't like that idea." They tell us they have an even better numbing method for that spot than for the port. But she is not persuaded. Something else to look forward to.
To end, here's a cheery anecdote. I met last week with one of Dayssi's pre-school teachers for a parent-teacher conference. We talked at length about how Dayssi is adjusting to being back at school, her medication cycle and side effects, etc. I mentioned at the end of our conversation that many children do show cognitive and motor deficits (which respond to therapy) after being treated for ALL, but often they don't get noticed until elementary school. The teacher laughed and said, to the contrary, she had witnessed some very impressive problem solving behavior just that day. Apparently, during snack time, this teacher was talking with the children at her table about a recent trip to Spain. She told them that she had seen a very interesting building that had about 25 chimneys! The kids were very interested in that and she asked them where they thought you should leave cookies for Santa Claus if there are 25 chimneys in the house. The first few kids to answer (some of whom are more than a year older than Dayssi, the teacher pointed out) said "the first chimney" or "the chimney with the stockings hanging on it," and then Dayssi said "you could leave the cookies on the roof, and then Santa could eat the cookies first, and then come down the chimney." Pretty good, eh?
The port comes out on January 30, assuming counts are up and Dayssi is healthy. Then we'll have to adjust to having blood drawn from inside the elbow. Whenever I talk to Dayssi about this she says " But I don't like that idea." They tell us they have an even better numbing method for that spot than for the port. But she is not persuaded. Something else to look forward to.
To end, here's a cheery anecdote. I met last week with one of Dayssi's pre-school teachers for a parent-teacher conference. We talked at length about how Dayssi is adjusting to being back at school, her medication cycle and side effects, etc. I mentioned at the end of our conversation that many children do show cognitive and motor deficits (which respond to therapy) after being treated for ALL, but often they don't get noticed until elementary school. The teacher laughed and said, to the contrary, she had witnessed some very impressive problem solving behavior just that day. Apparently, during snack time, this teacher was talking with the children at her table about a recent trip to Spain. She told them that she had seen a very interesting building that had about 25 chimneys! The kids were very interested in that and she asked them where they thought you should leave cookies for Santa Claus if there are 25 chimneys in the house. The first few kids to answer (some of whom are more than a year older than Dayssi, the teacher pointed out) said "the first chimney" or "the chimney with the stockings hanging on it," and then Dayssi said "you could leave the cookies on the roof, and then Santa could eat the cookies first, and then come down the chimney." Pretty good, eh?
Saturday, January 06, 2007
Quick One
All is well. Dayssi is on antibiotics for an ear infection that was diagnosed on Friday, so she's almost done with the medication. She is 4 days into her 5-day monthly steroid pulse, and is beginning to show subtle signs of the side effects, e.g., she is a little more clingy, and little more prone to tantrums, and a little more fixated on salty foods. She also had vincristine on Tuesday and has had a sore jaw. By Monday with any luck she'll be feeling better, in time to go back to school on Wednesday.
Jim and I are ok, too, relieved that the holidays are over and looking forward with hope toward a better year.
Jim and I are ok, too, relieved that the holidays are over and looking forward with hope toward a better year.
Thursday, December 28, 2006
Poofy Dress Greetings
Here, finally, are a couple of shots of the girls at Cousins Mike and Ann's wedding. Unfortunately Dayssi isn't smiling in the close up because she doesn't like to have her picture taken. I don't like to torment her with the camera, which is why there aren't more, better, shots. But, even without a smile, you can see how magical they were in the dresses which, after a crazy shipping fiascoe, finally landed at our hotel, smooshed into a small Fed Ex box, exactly one hour before we left for the ceremony. Phew.Ring around the Rosie was lots of fun though, and the girls were mesmerized by "the bride." Ann, you are officially a legend in our household, right up there with Kim Possible, Oprah and Barbie (who tends to rescue her nameless male counterpart rather than the other way around). Our girls tend to think of themselves as knights in princess clothing. I love that. There's also been a lot of wedding talk, especially from Dayssi, who told me the other night with determination, "Mama, if I can't marry Daddy then I'm not getting married."
Anyway, the wedding was beautiful and it was especially magical for the girls. Thanks Mike and Ann, for including us!
Granny and Grandad were here for Christmas; they just left today. It was a nice, long, 10-day visit, but I think there are still unopened gifts lying around. Granny and Grandad LOVE to give presents, and the girls kinda like it that way!
The holidays have been fun but I have to say I'm exhausted. Jim and I went to the movies today and I started crying during the previews and didn't stop until the feature was done. We saw Dreamgirls -- it isn't THAT sad, either. But I thought it was very efficient of me, to be able to cry on a dime during the only two hour period that I've had to myself (no kids, no guests, no parties) in the past two weeks. I'm kinda like that.
Among other things, I'm very emotional these days about friends. There are some people in our lives who, especially during the past 8 months, have stunned me with their unflinching stamina and presence. We have not always been available, reliable, responsive, or very much fun. We are rarely proactive. Dayssi has often felt yucky, looked scary, and had an immune system that requires constant vigilance on everyone's part to avoid the spreading of germs. But nothing seems to drive these folks away. They aren't afraid of reaching out or assuming too much or saying the wrong thing. They understand that sometimes you need to talk about how awful it is to have a kid with leukemia, and other times you need to laugh at the insanity of it, or just talk about work, or gossip. They ask how we're doing and, whatever comes back, they take it, they listen, they laugh or cry with us, and they do us the great courtesy of trusting us to be able to bear the weight of their own struggles, which allows us to stay close to them.
It is another great gift of Dayssi's leukemia that these kinds of people have appeared and revealed themselves to be the remarkable people they are, showing me, without knowing it, how to be a better person myself.
Friday, December 22, 2006
All is well
Sorry for the lapse. Just busy, and waiting to find the camera, and re-attach the computer, and shopping, and attending lots of holiday parties, and trying to squeeze in our Hanukah celebrations around the edges, and Granny and Grandad visiting. Phew.
Dayssi's counts are holding steady and she feels great. She has a cold and cough but we checked her out at the hospital on Monday and there is no cause for concern.
Will try to post again soon with some pictures.
Happy Holidays!
Dayssi's counts are holding steady and she feels great. She has a cold and cough but we checked her out at the hospital on Monday and there is no cause for concern.
Will try to post again soon with some pictures.
Happy Holidays!
Thursday, December 07, 2006
Celebrations
We are off to cousin Mike's wedding tomorrow in Arizona. I got the girls some gorgeous poofy wedding-ish dresses just for fun. Will try to take some pix and post when we return.
Everyone has a cough right now but Dayssi's counts seem to be stable and nothing is escalating out of control. She did start a new cycle with vincristine and a 5-day steroid pulse on Monday, so she is not feeling tip top. But the side effects should resolve by end of weekend for sure. I hope she'll feel well enough to enjoy her poofy self at the wedding!
We celebrated my birthday on Tuesday too, and that was a lot of fun. The girls bought me earrings (very glitzy, but I will be wearing them!) and India's kindergarten class suprised me by singing happy birthday when I dropped her off. I played hookey and spent the entire day with good friends, acting like ladies who lunch and just generally being decadent. All of this, combined with a little get together on Saturday night, and lots of beautiful gifts, cards, flowers, phone calls and emails from far away friends, made it a fantastic birthday. Thanks everyone!!
Everyone has a cough right now but Dayssi's counts seem to be stable and nothing is escalating out of control. She did start a new cycle with vincristine and a 5-day steroid pulse on Monday, so she is not feeling tip top. But the side effects should resolve by end of weekend for sure. I hope she'll feel well enough to enjoy her poofy self at the wedding!
We celebrated my birthday on Tuesday too, and that was a lot of fun. The girls bought me earrings (very glitzy, but I will be wearing them!) and India's kindergarten class suprised me by singing happy birthday when I dropped her off. I played hookey and spent the entire day with good friends, acting like ladies who lunch and just generally being decadent. All of this, combined with a little get together on Saturday night, and lots of beautiful gifts, cards, flowers, phone calls and emails from far away friends, made it a fantastic birthday. Thanks everyone!!
Monday, November 27, 2006
Happy Thanksgiving
It has been hard to find the focus to write anything meaningful lately. So I've been putting this off.
Dayssi is very well, speeding along through LTM. Her counts have been stable, her mood is upbeat, she is physically strong and full of energy. And her hair is coming back in (peach fuzz at this point and, depending on the light, it looks either white blond or dark brown. hmm.) She is a little obsessed with death and dying right now. And I'm hoping that is just developmental. She seems to be playing right through it, with lots of morbid dialogue among Barbies and their friends, and she is sleeping fine. So with any luck this will pass, soon, as frankly it is a little unsettling for me to have to hear all of this dark stuff coming out of her cheery mouth and little bald head all of the time.
India is thriving -- loves kindergarten (and, we learned from her recent report card, is heartily loved in return), is making lots of new friends, developing new interests, and a new sense of herself as a growing-up girl. Last night at bedtime I leant down and told her "I love you, lots and lots," and she held my face in her hands and said "Me too (kiss on my nose), especially that nose of yours."
Jim is also in a very good place right now. He likes his privacy so I won't say more.
I, however, am a little off kilter -- exhausted, short-tempered, unfocused, and almost incapable of making any decisions or directing my own life in any meaningful way. Confused about what I am supposed to be doing, when. Kind of emotional, but not about anything important. Just not myself. Well, I guess the absent-mindedness IS actually kind of like me. But otherwise, no.
The psychologist in me knows this is to be expected. You keep all of these crazy fears and emotions bottled up inside to help others through a crisis, and when the crisis subsides and everyone else is doing ok, you just start to unravel. So, here it is -- I am officially unraveling -- and now I have to figure out how to deal with it. Concerned people: I am getting help, from loved ones and from a professional. And I am on a mission to reclaim my life.
Case in point: Thanksgiving weekend. We had a small family dinner at home. India and I gathered berries and greens from our yard and decorated the table, same as last year. The table looked beautiful and she was very proud. The food turned out pretty well but not as well as last year, which I now see was beginners luck (until now I thought I had displayed some raw talent!). Or maybe this year was the aberration -- I made a bunch of mistakes with the recipes, consistent with my observation about my current state of mind. So, the cranberry sauce was a little tart (I used a half cup of lemon juice rather than the juice of half a lemon) and the turkey was undercooked on the bottom (it was slightly frozen when we picked it up and it didn't occur to me to defrost before cooking, DUH.) The top of the turkey was delicious. I overcooked the stuffing, and the acorn squash, which was bad in the first case but kind of nice in the second. It can't have been all bad because Jim chowed down on leftovers after wrestling last night. As an aside, if I had realized the satisfaction in watching your man enjoying something you have made for him with your bare hands I would have tried cooking more often much earlier in my life!
We invited friends for dinner after a playdate on Friday afternoon but didn't really have enough food to make dinner for 8. So while the girls were playing under dads' "supervision" (just jokin' guys) I took my friend Carrie (who graciously made it seem perfectly normal) to the grocery store. We made burgers and salad, with ice cream cones for dessert, and it was so great to see them and to have a house full of kids again after all the weeks of isolation and quasi quarantine.
Friday night after they left we solidified a plan to stay in San Francisco on Saturday night and introduce the girls to some parts of the city. We booked a hotel in Fisherman's Wharf and headed up on Saturday afternoon post nap. By 5:15 we were in the Wharf, navigating huge crowds, taking in the sites and smells of crabs cooking and shells flying on the sidewalks. The girls were very excited about having crab for dinner until Dayssi realized that crabs have eyes. That killed it for her and, ultimately, for India. They had sourdough bread and pasta for dinner. Jim and I had crabs, shrimp, mussels and clams (you know how Jim likes to mix it up). Good stuff.
We stayed up until 9:15 (!!) watching the Cheetah Girls movie in our hotel room and finally hit the hay. Next morning we met Carrie, Bruce and the girls at the Glide Memorial Church in the Tenderloin for some great gospel music and so, so much more. I hesitate to describe this experience further, for fear of trivializing all of the truly amazing things about this church. If you want to know more: www.glide.org.
But that is not all. After church we took the girls on the cable car, from Fisherman's Wharf all the way to Powell Street, past Chinatown and the big Christmas Tree in Union Square. We waited in the rain to get back on the car, then rode back to Fisherman's Wharf, checked out of the hotel, and headed over to Chinatown for lunch. We couldn't find parking and it was pouring, so we double-parked on Jackson Street while Jim hopped into a tiny dim-sum place and grabbed a bunch of DELICIOUS treats for a lunch in the car on the way home. Dayssi slept though the whole thing but India enjoyed all of the different varieties of pot stickers and dumplings. When all was said and done, her assessment: "I like the colors better in Chinatown but I like the potstickers better at PF Changs."
This morning I THOUGHT I had a meeting at 8:30, so I drove India to school and sent Jim to the hospital with Dayssi for her blood work. Turns out the meeting is February 7 (as in 2/7), not November 27. Oops. I asked Jim to pick up a Zofran refill in the pharmacy at the hospital, but he couldn't get it and couldn't figure out why. Turns out I had called in the Zofran refill to the drugstore, not the hospital pharmacy. He did get the Septra at the hospital pharmacy, which is what I called in there. Can you even believe this?
I called Jim to apologize about the "wrong day" thing, and then had to apologize for the "wrong pharmacy" thing. And after all of this he didn't even yell at me or sound exasperated or anything. See what I mean? Jim is in a really good place. And I have so much to be thankful for.
Dayssi is very well, speeding along through LTM. Her counts have been stable, her mood is upbeat, she is physically strong and full of energy. And her hair is coming back in (peach fuzz at this point and, depending on the light, it looks either white blond or dark brown. hmm.) She is a little obsessed with death and dying right now. And I'm hoping that is just developmental. She seems to be playing right through it, with lots of morbid dialogue among Barbies and their friends, and she is sleeping fine. So with any luck this will pass, soon, as frankly it is a little unsettling for me to have to hear all of this dark stuff coming out of her cheery mouth and little bald head all of the time.
India is thriving -- loves kindergarten (and, we learned from her recent report card, is heartily loved in return), is making lots of new friends, developing new interests, and a new sense of herself as a growing-up girl. Last night at bedtime I leant down and told her "I love you, lots and lots," and she held my face in her hands and said "Me too (kiss on my nose), especially that nose of yours."
Jim is also in a very good place right now. He likes his privacy so I won't say more.
I, however, am a little off kilter -- exhausted, short-tempered, unfocused, and almost incapable of making any decisions or directing my own life in any meaningful way. Confused about what I am supposed to be doing, when. Kind of emotional, but not about anything important. Just not myself. Well, I guess the absent-mindedness IS actually kind of like me. But otherwise, no.
The psychologist in me knows this is to be expected. You keep all of these crazy fears and emotions bottled up inside to help others through a crisis, and when the crisis subsides and everyone else is doing ok, you just start to unravel. So, here it is -- I am officially unraveling -- and now I have to figure out how to deal with it. Concerned people: I am getting help, from loved ones and from a professional. And I am on a mission to reclaim my life.
Case in point: Thanksgiving weekend. We had a small family dinner at home. India and I gathered berries and greens from our yard and decorated the table, same as last year. The table looked beautiful and she was very proud. The food turned out pretty well but not as well as last year, which I now see was beginners luck (until now I thought I had displayed some raw talent!). Or maybe this year was the aberration -- I made a bunch of mistakes with the recipes, consistent with my observation about my current state of mind. So, the cranberry sauce was a little tart (I used a half cup of lemon juice rather than the juice of half a lemon) and the turkey was undercooked on the bottom (it was slightly frozen when we picked it up and it didn't occur to me to defrost before cooking, DUH.) The top of the turkey was delicious. I overcooked the stuffing, and the acorn squash, which was bad in the first case but kind of nice in the second. It can't have been all bad because Jim chowed down on leftovers after wrestling last night. As an aside, if I had realized the satisfaction in watching your man enjoying something you have made for him with your bare hands I would have tried cooking more often much earlier in my life!
We invited friends for dinner after a playdate on Friday afternoon but didn't really have enough food to make dinner for 8. So while the girls were playing under dads' "supervision" (just jokin' guys) I took my friend Carrie (who graciously made it seem perfectly normal) to the grocery store. We made burgers and salad, with ice cream cones for dessert, and it was so great to see them and to have a house full of kids again after all the weeks of isolation and quasi quarantine.
Friday night after they left we solidified a plan to stay in San Francisco on Saturday night and introduce the girls to some parts of the city. We booked a hotel in Fisherman's Wharf and headed up on Saturday afternoon post nap. By 5:15 we were in the Wharf, navigating huge crowds, taking in the sites and smells of crabs cooking and shells flying on the sidewalks. The girls were very excited about having crab for dinner until Dayssi realized that crabs have eyes. That killed it for her and, ultimately, for India. They had sourdough bread and pasta for dinner. Jim and I had crabs, shrimp, mussels and clams (you know how Jim likes to mix it up). Good stuff.
We stayed up until 9:15 (!!) watching the Cheetah Girls movie in our hotel room and finally hit the hay. Next morning we met Carrie, Bruce and the girls at the Glide Memorial Church in the Tenderloin for some great gospel music and so, so much more. I hesitate to describe this experience further, for fear of trivializing all of the truly amazing things about this church. If you want to know more: www.glide.org.
But that is not all. After church we took the girls on the cable car, from Fisherman's Wharf all the way to Powell Street, past Chinatown and the big Christmas Tree in Union Square. We waited in the rain to get back on the car, then rode back to Fisherman's Wharf, checked out of the hotel, and headed over to Chinatown for lunch. We couldn't find parking and it was pouring, so we double-parked on Jackson Street while Jim hopped into a tiny dim-sum place and grabbed a bunch of DELICIOUS treats for a lunch in the car on the way home. Dayssi slept though the whole thing but India enjoyed all of the different varieties of pot stickers and dumplings. When all was said and done, her assessment: "I like the colors better in Chinatown but I like the potstickers better at PF Changs."
This morning I THOUGHT I had a meeting at 8:30, so I drove India to school and sent Jim to the hospital with Dayssi for her blood work. Turns out the meeting is February 7 (as in 2/7), not November 27. Oops. I asked Jim to pick up a Zofran refill in the pharmacy at the hospital, but he couldn't get it and couldn't figure out why. Turns out I had called in the Zofran refill to the drugstore, not the hospital pharmacy. He did get the Septra at the hospital pharmacy, which is what I called in there. Can you even believe this?
I called Jim to apologize about the "wrong day" thing, and then had to apologize for the "wrong pharmacy" thing. And after all of this he didn't even yell at me or sound exasperated or anything. See what I mean? Jim is in a really good place. And I have so much to be thankful for.
Friday, November 17, 2006
Dayssi Rides
Yesterday both India and Dayssi rode bikes to school. Dayssi is peddling well but still not steering with any sense of cause-effect. The girls had a great time (India was very excited that Dayssi could ride with her) but I was a little stressed about whether or not we were going to make it to school before dismissal. Forget about on time. But, we were not late. Dayssi was mostly interested in showing the other kids that she could ride by herself but once everyone had oohed and aahed she was happy to let me push her trike with the handle, which obviates the need for both steering and peddling, and generally speeds things up (GRANNY AND GRANDAD, SELECTING THE PUSH HANDLE AS ONE OF THE TRIKE ACCESORIES WAS PURE GENIUS, THANK YOU).
India is out of school today with a tummy ache. It is too bad because yesterday her class prepared a Thanksgiving dinner, and they were supposed to eat it today. She was disappointed but is clearly not well, as she opted to stay home with Kirsi, instead of going to school, even though she did not want to miss the "feast". And if India says no to a feast, something is not right.
Jim and I are preparing for a long-overdue night away, as we are headed up to San Francisco on Tuesday to attend opening night at the San Francisco Opera. The preparations are not trivial, since this event is black tie and, needless to say, we have not been doing a lot of black tie lately. I think we've got all of our duds in order at this point, and we have a hotel reservation in the city. We were invited to the show. Now all we have to do is get ourselves up there and stay awake past 9pm.
India is out of school today with a tummy ache. It is too bad because yesterday her class prepared a Thanksgiving dinner, and they were supposed to eat it today. She was disappointed but is clearly not well, as she opted to stay home with Kirsi, instead of going to school, even though she did not want to miss the "feast". And if India says no to a feast, something is not right.
Jim and I are preparing for a long-overdue night away, as we are headed up to San Francisco on Tuesday to attend opening night at the San Francisco Opera. The preparations are not trivial, since this event is black tie and, needless to say, we have not been doing a lot of black tie lately. I think we've got all of our duds in order at this point, and we have a hotel reservation in the city. We were invited to the show. Now all we have to do is get ourselves up there and stay awake past 9pm.
Monday, November 13, 2006
Halloween Pics (at last)
Finally got the computer back up. Here are pictures from Halloween."Dayssi, India; I AM your father!"
Dayssi skates
All is well. We had busy weekend, including ice skating last night. Normally when we ice skate Dayssi rides around in the stroller, but last night she insisted on trying her own two feet. She was all over the place, falling in every direction possible and with very little body control at first, which she thought was HILARIOUS. By the end of the night she was shuffling around a bit without holding on -- maybe up to 5 steps or so without going down. Her determination was palpable, and her giggles just filled up the rink.
Finger poke this morning, no port access. It was a piece of cake. Afterward we went to school where I watched Dayssi hold court at her snack table. It is only her third day back after 10 weeks out, and it is only her 4th day ever at nursery school without India, but she acts like she's been doing this for years.
Finger poke this morning, no port access. It was a piece of cake. Afterward we went to school where I watched Dayssi hold court at her snack table. It is only her third day back after 10 weeks out, and it is only her 4th day ever at nursery school without India, but she acts like she's been doing this for years.
Monday, November 06, 2006
Check!
We have officially started Long Term Maintenance so I can cross that off my list. Dayssi did great this morning, no anxiety, no discomfort. We started her 5-day steroid "pulse" (once every month) and she swallowed the first pill with one sip of juice. She is a pro. She even makes the face of an adult taking a pill, that slack-jaw "I don't want to taste this thing so I'm not going to suck on it or crush it or let it touch any taste buds" kinda face. The Zantac, which follows the steroid, is her least favorite medication right now and I'm going to see if we can get that in pill form too.
We decided not to have Dayssi's port removed today although it was an option. We are having a little post-decision regret, having thought harder about the trade-offs (risk of infection versus discomfort having blood draws and monthly chemo without the port, so using IVs and regular inside of the elbow technology). We will probably have it removed in February, when Dayssi has her next lumbar puncture. No sense having an extra general anesthesia, which carries its own risks.
Her hair should start growing back during this phase, and she will be happy about that. Can't wait to see what it looks like.
We decided not to have Dayssi's port removed today although it was an option. We are having a little post-decision regret, having thought harder about the trade-offs (risk of infection versus discomfort having blood draws and monthly chemo without the port, so using IVs and regular inside of the elbow technology). We will probably have it removed in February, when Dayssi has her next lumbar puncture. No sense having an extra general anesthesia, which carries its own risks.
Her hair should start growing back during this phase, and she will be happy about that. Can't wait to see what it looks like.
Saturday, November 04, 2006
LTM on Monday
Dayssi "made counts" on Friday (ANC 900ish) so we are scheduled to start LTM bright and early Monday morning.
The last few days have felt like a bit of a relief. Dayssi hasn't had any chemotherapy in three weeks and she feels so good! We're watching her exposoure obviously but without all of the meds and their potential side effects there is a lot less to worry aobut. It feels like a window on to what it might feel like someday to actually be done with leukemia.
Today we went to the Monterey Aquarium and it was amazing to see Dayssi's energy and to remember how, when we went last spring just weeks before her diagnosis, she had wanted to be carried everywhere. Of course we had no idea why. Karen and Erin, if you are reading this, Dayssi asked this morning several times if we were going to see Grace and Emily. And she asked a couple of times, "Mom, is Andrew the little one or the big one??" We even went to Bubba Gumps. Boy do we miss you guys!
Anyway, we're hoping that LTM will not slow us down too much, and that we should be able to get back to some more regular activities too, like dance class, and swimming class, and pre-school!! Dayssi's teachers have called me off and on to check in (she's been out for almost 10 weeks straight) and just last week Beth, the amazing music teacher, called to let me know that a CD she produced (on which India and I sang!) had been released. We picked it up on Friday and the girls have been listening to it more or less non stop. Both girls are clearly thrilled to hear the familiar songs and the voices of their teachers. It is perfect timing for Dayssi's re-introduction to school.
There is a kind of cool story about the CD. The producer, Beth, who is an incredibly talented musician and teacher, was the head teacher in Dayssi's "young two's" classroom at the time she was diagnosed. Dayssi was only attending school one day a week at that time but one of the songs they sang there each Friday was "Choo Choo Train." I always loved to sing this song -- had never heard it before -- and I used to try to invent harmonies just to entertain myself while singing it in the class. When Dayssi had to have her first procedure in the hospital I spontaneously started singing the Choo Choo Train song to try to calm and distract her (and myself!). I can't remember if I started this with the intial blood draws and her first IV, or the first spinal procedure, which we did on the first day of treatment, without general anesthesia (yuk, that was not fun). Anyway, it turned out to be a great intervention because the song describes a train ride that involves stopping at various people's houses (in class we sang about stopping at each child's house) and I could see Dayssi becoming completely focused on trying to anticipate whose house I was going to sing about next. And I imagined it was a comfort to hear a familiar song from school and to think about all of the people she loves at a time when she was frightened or uncomfortable. So it became a regular part of our procedure routine for me to sing this song while Dayssi was on the operating table, breathing sleepy air or waiting for some IV anesthesia to kick in. She would specifically request it. During the summer, when Dayssi started going back to school, Beth announced that she was making the CD and asked for parents to volunteer if they wanted to participate. I told Beth and Dayssi's other favorite teacher, Neely, that we had adopted the Choo Choo Train song and that I would love to sing it with them on the CD. Beth jumped all over the suggestion, writing lyrics and coming up with an arrangement that incorporated the visualization of journey past the homes of various story book characters on this train. Recording the song with Beth and Neely was, without question, the absolute highlight of my summer for so many reasons. They are fantastic women and it was so much fun to make music with them. We recorded the song about 10 times over two days. And the result is the first track on the CD. I think it sounds great and am so glad to have this memory preserved for us. Maybe I'll see if we can get the song uploaded on here . . .
I sang in a couple of other recording sessions with some of the other teachers and kids from India's class, including India. I think Dayssi came with us into the studio for a few of those but she didn't know any of the songs, so she didn't even try to sing. And I'm not sure if any of those made it onto the CD. It is hard to tell because I believe some of the songs were recorded multiple times with multiple groups. So India's voice might not be on the CD, but her picture ended up on the insert, which is a fun surprise!!
Jim had a big honkin' deadline on Wednesday and we are all enjoying its passing!
Will upate on Monday.
The last few days have felt like a bit of a relief. Dayssi hasn't had any chemotherapy in three weeks and she feels so good! We're watching her exposoure obviously but without all of the meds and their potential side effects there is a lot less to worry aobut. It feels like a window on to what it might feel like someday to actually be done with leukemia.
Today we went to the Monterey Aquarium and it was amazing to see Dayssi's energy and to remember how, when we went last spring just weeks before her diagnosis, she had wanted to be carried everywhere. Of course we had no idea why. Karen and Erin, if you are reading this, Dayssi asked this morning several times if we were going to see Grace and Emily. And she asked a couple of times, "Mom, is Andrew the little one or the big one??" We even went to Bubba Gumps. Boy do we miss you guys!
Anyway, we're hoping that LTM will not slow us down too much, and that we should be able to get back to some more regular activities too, like dance class, and swimming class, and pre-school!! Dayssi's teachers have called me off and on to check in (she's been out for almost 10 weeks straight) and just last week Beth, the amazing music teacher, called to let me know that a CD she produced (on which India and I sang!) had been released. We picked it up on Friday and the girls have been listening to it more or less non stop. Both girls are clearly thrilled to hear the familiar songs and the voices of their teachers. It is perfect timing for Dayssi's re-introduction to school.
There is a kind of cool story about the CD. The producer, Beth, who is an incredibly talented musician and teacher, was the head teacher in Dayssi's "young two's" classroom at the time she was diagnosed. Dayssi was only attending school one day a week at that time but one of the songs they sang there each Friday was "Choo Choo Train." I always loved to sing this song -- had never heard it before -- and I used to try to invent harmonies just to entertain myself while singing it in the class. When Dayssi had to have her first procedure in the hospital I spontaneously started singing the Choo Choo Train song to try to calm and distract her (and myself!). I can't remember if I started this with the intial blood draws and her first IV, or the first spinal procedure, which we did on the first day of treatment, without general anesthesia (yuk, that was not fun). Anyway, it turned out to be a great intervention because the song describes a train ride that involves stopping at various people's houses (in class we sang about stopping at each child's house) and I could see Dayssi becoming completely focused on trying to anticipate whose house I was going to sing about next. And I imagined it was a comfort to hear a familiar song from school and to think about all of the people she loves at a time when she was frightened or uncomfortable. So it became a regular part of our procedure routine for me to sing this song while Dayssi was on the operating table, breathing sleepy air or waiting for some IV anesthesia to kick in. She would specifically request it. During the summer, when Dayssi started going back to school, Beth announced that she was making the CD and asked for parents to volunteer if they wanted to participate. I told Beth and Dayssi's other favorite teacher, Neely, that we had adopted the Choo Choo Train song and that I would love to sing it with them on the CD. Beth jumped all over the suggestion, writing lyrics and coming up with an arrangement that incorporated the visualization of journey past the homes of various story book characters on this train. Recording the song with Beth and Neely was, without question, the absolute highlight of my summer for so many reasons. They are fantastic women and it was so much fun to make music with them. We recorded the song about 10 times over two days. And the result is the first track on the CD. I think it sounds great and am so glad to have this memory preserved for us. Maybe I'll see if we can get the song uploaded on here . . .
I sang in a couple of other recording sessions with some of the other teachers and kids from India's class, including India. I think Dayssi came with us into the studio for a few of those but she didn't know any of the songs, so she didn't even try to sing. And I'm not sure if any of those made it onto the CD. It is hard to tell because I believe some of the songs were recorded multiple times with multiple groups. So India's voice might not be on the CD, but her picture ended up on the insert, which is a fun surprise!!
Jim had a big honkin' deadline on Wednesday and we are all enjoying its passing!
Will upate on Monday.
Subscribe to:
Comments (Atom)