Tuesday, November 29, 2005

Little T's speech evaluation

Little T had his speech evaluation on Sunday. Both of his OTs suggested it at the end of September. We knew he was somewhat delayed, because he spent January to May on Vincristine a chemotherapy drug, which paralyzed his vocal cords. For months he could make no sounds at all. Before Vincristine, he was starting to babble. After Vincristine and until he was 11 months old, all he said was "gah." Then he started saying other syllables like "bah" and "mah". Then finally earlier this month at 13.5 months he said "bye" his first word. Now he says "hi", "yeah yeah yeah yeah" a lot and "uh oh" once. I thought that four words was good enough, but apparently not. None of his words label a person or object.

He points. He reads books for about two minutes. He occasionally answers questions with yes. All good. However he doesn't repeat any sounds. He doesn't respond to no. He doesn't follow any directions.

The thing that worries me the most is not repeating sounds. He stares at you intently with furrowed brow and then tries to do something, but he just can't do it. So he laughs or says "gah". Even if you say something he can already say. Something seems broken there.

Now I'll have to say what his speech therapist said, which is there's a huge variation amongst kids, so if you have a normal kid who doesn't have any medical issues and is like Little T, then I probably wouldn't worry about it.

The speech therapist will recommend therapy obviously through Early Start. We'll see what happens.

I've been talking and reading to him everyday, and asking him to do things. That's how I always treat him, but it's apparently also good speech therapy. The therapist also suggested giving him a choice of two objects and asking him to point to one.

Little T's slow rise

I guessed Little T's platelets would be 95. They were 97. That's not normal, but also not dangerous. If his platelets continue to remain at this level or above, he's going to continue on the same high dose of steroids for another month, then gradually wean down.

He's finally started gaining weight again up to 9256g, though the steroids are definitely stunting his growth, because he hasn't grown at all since he last measured on 11/16 when he measured 69.7 cm.

We had to wait over half an hour for his blood draw, but we had Sean again, so once again he got it smoothly on one try.

We're going down to once a week appointments now. Phew!

Despite the high dose of steroids, Little T is still laughing, scooting, and babbling most of the time. He only flies in rages about twice a day. His arm continues to shrink and his elbow now bends ever so slightly as the tumor slowly shrinks milimeter by milimeter. Though I am concerned that with the steroids, he seems to have lost his desire to walk or cruise. When I try to walk him, he won't hold his legs straight. However he pulls up on C and me all the time. Go figure.

Saturday, November 26, 2005

My birthday and Thanksgiving

C took me out to dinner for my birthday so we actually got to spend a couple hours alone, a rare treat these days. C gave me the new Madonna album "Confessions on The Dance Floor" It goes back to her old 80's dance roots, except as C says "now she can sing". I enjoyed the album, especially "Hung Up". C also gave me some amber.

Thanksgiving was somewhat stressful. No family drama or anything. Though we did have an expected visitor who stayed on Friday for 4 hours. We could only stay one night, so that cut down our family time a lot. It's very difficult and stressful to sleep with Little T. His pump is very loud. He wakes up easily, so he woke up when we came to bed. Special K sleeps with us and gropes us in bed. So nobody slept well.

First Non-fiction Manuscript

Zokutou word meterZokutou word meter
26,146 / 80,000 (32.7%)

Wednesday, November 23, 2005

Polyamory on Montel 11/29

Montel will be airing an episode on polyamory featuring a poly couple I know, as well as the couple listed below, and other poly people. In the SF bay area, it will air on Channel 2 at 4pm. I'm Tivoing it if anyone local wants to see it.

Someone reviewing the show blogged "This is the episode that was filmed a couple weeks ago, and will feature X and Y (who were on the Bullshit episode). The chatter is that the taping went quite well, and X was as articulate as ever. Apparently the audience was initially a bit hostile, but she turned it

One of the people I know blogged "My favorite bit, though, has to be the fact that Montel chose to close the show with a video clip of Z's daughter (a very poised age 15, and a TV actress, among her other talents) saying how GREAT it was to be raised in a polyamorous household."

I haven't seen the show and I'm not sure how out the people are, or if they used real names on the show, so I'm not using real names for now.

I'm skeptical that Montel can produce a fair show on polyamory or indeed anything controversial really, but I'll watch and see. I just hope that Montel showed my friends in a good light since they are good-hearted people. And I understand their desire to talk about polyamory on tv to try to dispel myths about it. Like any sexuality that goes outside of societal norms, there's a lot of ignorance and prejudice against it.

But I have to say that if you've never heard of polyamory or know little about it, I suggest you go to polyamory.org rather than watch Montel.

Tuesday, November 22, 2005

Little T's platelets and MRA

Unfortunately his platelets have dropped to 67. Below 50 is when we need to worry about him pulling up and cruising, but it's a downward trend. Also the clinic is closed on Friday, so instead of going in then as we would normally with a number like that, we have to wait until Tuesday.

The doctors have increased his steroids to 2.7mg/kg, so I expect him to get angrier. Right he flies into 'roid rages 2-3 a day. He already has a "moon face" from the steroids.

Poor guy had 3 sticks today to get an IV in him, because he had to go under general anesthesia for an MRA(an MRI with contrasting dye) to look at the tumor on his left arm. The MRA showed that his tumor is smaller than his last MRA in April. Not too surprising, and that it's not growing into anything important.

He came through much better than we expected. For the first time in numerous times under anesthesia, he woke up before he got to the recovery room. By the time I got there he appeared alert and pointed at me to try and get me to pick him up. Within five minutes he was drinking and then proceeded to drink 6oz over the course of an hour. That's a new drinking record for him. Poor guy he'd been off food since midnight the night before. And usually we give him a 600ml feed overnight through his g-tube.

Monday, November 21, 2005


I had a lovely time at owlmoose's Moose Day tea. Owlmoose and her friends originally started Moose Day as the Friday after Thanksgiving and you always have a tea. I think it's a fine tradition. We celebrated a week early because anzubird and luvmoose were in town.

I also enjoyed hanging out at Ethan's afterwards. Then we all went to Supenkuche and met C and my dad and ate hearty German food.

Afterward C, my dad and I saw Fidelio. I've heard Fidelio can be wonderful, but neither the singing nor the music of this performance moved me. C said "I can see why Beethoven only wrote one opera." That seems rather harsh to me, because this was just one performance.

Christine Brewer the heroine Leonore/Fidelio sang with neither the range nor the depth to make me believe she would die for her husband. She stood like a man throughout the entire show even after she had revealed she was a woman. In fact when she pulled off her cap to reveal short hair, I think it took the audience a little bit to realise "Oh, that's right she's a woman." I think the role calls for a bit more vulnerability that she portrayed. And certainly better acting. The best singer Thomas Moser as Florestan the prisoner convinced me how horrible prison life that even though his portly frame indicated that he was clearly well-fed. Unfortunately the singing of Juha Uusitalo who played Don Pizarro the villain of the opera lacked the power to creep me out and at times was drowned out by the orchestra. In fact at times it was rather pathetic, because portly Florestan was singing over Don Pizarro.

The staging did a great job of portraying a grim prison setting, but was otherwise awful. Fidelio and Florestan are supposed to drive off Don Pizarro, except the way it was staged, the two singers were left singing in the dungeon and the door was closed behind them. So instead of reveling in the moment that they're free, you're worrying that they're trapped in the dungeon. Then finally the stage changes and they're out in the sunlight. Phew! What a sigh of relief. The opera's almost over. Though the denoucement was gorgeous and made me wish that the rest of the opera had been as good. Though I also had to admit it was also the most symphonic part of the entire opera.

We've seen all the operas for the fall season so we won't be going to the opera again until June.

Sunday, November 20, 2005

Burma tries to hide its capital. The world notices...a little

C sent me this NY Times article on the day, Burmese government moves the capital to a secret mountain compound

Today I finally had time to gather more details about the latest bizarre behavior from the Burmese goverment and international reactions.

Web India
states "Myanmar's new administrative capital at Pyinmana will be named Nay Pyi Daw (place of a king)...Sources told Mizzima News that Nay Pyi Daw is less than fit for a king with telephone lines the only modern amenity available."

It's drawing attention to Burma (renamed by the military junta to Myanmar), which is a good thing since most of the time the world doesn't even realise it exists.

According to the SJ Merc,

Secretary of State Condoleezza Rice said Wednesday the military junta in Myanmar is "one of the worst regimes in the world" for its record on human rights and free speech...President Bush also criticized Myanmar on Wednesday.

Wow, Bush actually mentions Myanmar by name. I didn't realise he even knew Myanmar was a country. Not that any actions followed these words.

U.N. envoy Paulo Sergio Pinheiro told reporters last month that "megaphone diplomacy" wasn't working with the increasingly isolated regime in Myanmar, and said human rights victims whom the West could help are being held hostage to politics.

I am frustrated, I am not happy with the approaches that the main countries concerned with Myanmar are having," Pinheiro said. "If this course will continue, I don't see any reason for optimism."

Pinheiro has not been allowed to visit Myanmar, also known as Burma, since November 2003. Appointed in 2001, his term expires in April."

The Boston Globe had a great editoral arguing
If the president wishes to show he is as concerned with fostering democracy in Asia as he has been in Lebanon, Iraq or Egypt, he will lobby the 21 members of the Asia-Pacific Economic Cooperation Leaders' Meeting to have the UN Security Council take up the issue of Myanmar, formerly known as Burma, and the depradations of that country's military dictatorship.

Unfortunately I think the chance of that happening are a snowball's chance in hell. Bush is fighting an unpopular and costly war in Iraq which is draining most of the US foreign policy resources. Myanmar is a mere bit player. China backs Myanmar. He doesn't want to annoy China.

I found this quote from the Malaysia Star somewhat amusing:
Myanmar should inform Asean if it has shifted its capital from Yangon to Pyinmana, said Foreign Affairs Minister Datuk Seri Syed Hamid Albar.

“When an Asean member country shifts its administrative centre and the others don’t know about it, it can be quite embarrassing,” he told Malaysian journalists here yesterday."

With less government presence around them, perhaps people in the capital will be more free to get on with their lives. But it also strikes me as somewhat disturbing. What will happen to Aung San Suu Kyi who is periodically placed under house arrest by the Burmese government? I couldn't find anything about that on the web, so I hope she's okay. My prayers go out to her and the other Burmese political prisoners.

As I hope you know, Aung San Suu Kyi won the Nobel Peace Prize in 1991. If you don't know anything about Aung San Suu Kyi, I encourage you to go your bookshop or library and read one of her books.

Letters from Burma, is a series of 52 essays (in English) she wrote for a Japanese newspaper. They talk about her travels in Burma, her family life, her beliefs and Burmese life. Whether you love or hate politics, I think you'll find it moving.

Freedom From Fear is also a collection of essays . The first essay is an essay written by Aung San Suu Kyi about her father who was also a revolutionary, the second part of the book contains political essays written by Aung San Suu Kyi and the third part of the book contains essays by other people. If you don't know Burmese history, then this is a good place to start, because her essays might confusing without this context.

Friday, November 18, 2005

Little T's platelets stay low

Little T's platelets today were 87, so really about the same. That's what I thought going in. But I didn't hear what I was dreading: he would have to go back on Vincristine. I'm very grateful for that.

C came with me and really it's far easier to ask hard questions when he's there. So I asked what would put Little T back on Vincristine. The short answer is his platelets would have to drop below 20. His doctor actually mentioned Vincristine when his platelets were 211, but she tends to be a pessimist. The time before, his platelets were down to 40 and she was envisioning them dropping down below 20. Of course the long answer is his platelets do have to improve over time, but he has some time.

In addition he could get a higher dose of steroids. He's on 2mg/kg and he could go up to 3mg/kg for a short time.

Sadly he is definitely immunocompromised on this dose, so he can no longer be in occupational/physical therapy in a group setting.

He lost about 50g. I think it's the effect of the steroids. He eats more and loses weight. What a great diet except that you

My writing continues. I caught up on the days I missed and my non-fiction book is at almost 24k now. I also finished an article on my breastfeeding experiences with both kids, which I plan to submit once I get critiques. Please let me know if you want to read it.

Thursday, November 17, 2005

"Uh oh" and good news about Special K

I'm having a really hard time not worrying about Little T going back on Vincristine. I know we can get through it. We went through it before. But I feel sad when I think about him getting another Broviac, losing his voice, getting weakness in his legs. I don't know why I can't stop thinking about it. It does no good, since there's nothing I can do. And I'll feel silly if he does okay with the steroids.

Yesterday Little T said "Uh" Pause. "oh" when I dropped his bottle. He also said "Bye" to Roberta when she left. For the first time he said two words in one day. He hands out his words like precious gifts. Is that because he spent months unable to use his voice due to Vincristine? Prolly not because he sure says "Gah" all the time. He also says "Ahh!" when he's particularly pleased about something. Like when he got hold of the Tivo remote. He also gave me a big grin.

And I just went and read someone's blog whose baby is in the NICU teetering between CPAP and canula. Little T was on the canula for a day or so. To the doctors' amazement, his cardiovascular system held up even with the strain of supplying blood to a vascular tumor that was literally bigger than his head. I had forgotten about how worried they were in the first days with lots of tests and close monitoring. I guess I wasn't looking back far enough. In some ways, my boy is medically fragile, but in other ways he's incredibly strong.

I should add that Special K seems cheerful again. She's been dry for days. She's rushing about. She's bouncing again.

Her preschool schedules a phone call for every parent at this time. During our phone call, her teacher said that Special K was "smart, sweet, talkative. She finishes her work. She looks out for other kids. She wants to be a leader." After we talked more about that, we learned she's bossy. She also sometimes talks too much, but after she was removed from circle time once, she stopped talking when asked. That's my girl. Though I wouldn't know where she gets it from...

The best thing about the whole call was when I asked "How's Special K doing with her brother being sick off and on?" and her teacher said "I had no idea about her brother." We had written a note about Little T's tumor in the little form about your child you fill out at the beginning of the year, but evidently the teacher didn't read it. I hardly ever see her teachers because Special K likes to stay for lunch and different teachers look after the kids for lunch. Special K is certainly capable of saying her brother is sick, but obviously that's not on her mind when she goes to preschool.

Mostly Special K interacts with her brother by making him laugh, holding his hand, and telling him or us not to pull her hair or not to eat things (yes being bossy).

I'm so grateful Special K is doing well. I feel a bit better now. Thanks for reading.

Wednesday, November 16, 2005

Little T's milestones

I'm trying to stay positive since Little T is still smiling.

On Thursday (11/10) Little T sat up from lying to sitting all on his own for the first time. Previously he could do so with a little touch from me on his hip to help stabilize him. He spent a good hour Thursday night in his crib sitting up over and over again with a big grin on his face. It's a huge effort involving rolling over and half getting up on his knees, but you try getting up with a huge left arm that doesn't really work.

On Wednesday Little T discovered the joys of pointing at people. Yesterday he discovered the joys of pointing at objects. He pointed at a picture of Einstein and clouds. Maybe he's telling me his dreams.

He's gaining weight. On Friday 11/4 he weighed 8.5kg. On Tuesday 11/8, he weighed 8.7kg This past Tuesday, his weight was back down to 8.7kg (19.18 lb despite eating more. His arm shrank some, but I dunno where that 100 g went. He's still very short at 69.7 cm (27.4 inches) far below the charts. He's still below the charts in weight too.

Tuesday, November 15, 2005

Roller coaster down - tumor growing

Today Little T's platelets fell back down to 80, so Little T is back on massive amounts of steroids. We're not in the "fall down brain bleed" danger zone, but in the "fall off changing table" danger zone. Like most parents, we're already cautious about that type of falling anyway. He's already immuno-compromised. I'm bracing myself for more 'roid rages and days of holding Little T. Right now he's still scooting about on the floor, but we haven't given him the big dose of steroids yet. I'm enjoying the scooting while I can.

I had a bad feeling before I went in. His tumor seems to be growing at the back of his shoulder. He has two weird unexplained bruises on his thigh.

It's all very strange. His tumor is the smallest it's ever been in his life by several cm. And of course Torin's also the largest he's ever been. As the tumor shrinks or involutes, it also consumes platelets and fibronogen, because it's a vascular tumor, so it has to clot itself in order to shrink. Somehow he's managed to keep up with his clotting needs for months. Before this latest bout, he was KMS free since February. His bouts of Kasabach Merritt Syndrome seem to be related to the tumor's growth. But the growth itself seems to be small related to the amount that's shrinking. Overall the tumor itself is still smaller. Yet now he has KMS again.

My theory based, but on my reading of various KMS papers and my understanding of biology and no scientific testing whatsoever. But hey it's my blog. I can type whatever I want. I like the idea that hemangiomas/vascular tumors are placental tissue that wound up in the wrong place. It explains why they're relatively common and why most grows rapidly for a time and then eventually shrink. The tumors that cause KMS have a higher percentage of placental stem cells and that causes problems. Stem cells can morph into other cells. They can also call other cells to help them. The placental stem cells calls what it thinks are maternal blood cells, but are actually the kid's own blood cells. The poor blood cell platelets get trapped and so you have KMS. You get KMS when it grows, because of the influx of blood cells. It would also explain why some KMS tumors don't go away. The stem cells got morphed into kid cells aka tumor. Anyway, that's just my way of making sense of something that upsets me and doesn't have a well-understood mechanism right now.

Sunday, November 13, 2005

A bittersweet milestone

Last night Special K, C and I went to our first party without Little T. He had to stay at home, because he's still immuno-compromised. We had a good sitter through the respite care agency. By odd coincincidence she has the same name as our wonderful teenage babysitter.

The party itself was lovely. Lots of friendly people. Good food. Lots of kids. One kid had the exact same hair as Little T, said "gah", and took the same delight into moving about as Little T. He was also about the same size as Little T. He's 10 months old, so I guess that means Little T is functionally about 10 months old. Watching him really made me miss Little T. We came home after 2 1/2 hours and Little T seemed happy to see us, but continued to play contentedly with the babysitter. What a relief!

The holiday season is upon us. So we'll attend more parties without Little T. I feel sad for him. He loves parties. But I count my blessings that he's still here, he's at home, we have time to go to parties, we have people who can babysit him so we can go to parties, and of course we have friends who have parties.

Gateway drugs and opera

Organic milk is the gateway drug C said. Though organic milk wasn't my first foray into organic foods.

On Friday night C, my dad and I had a good meal at Indigo. I really enjoyed the Butternut squash soup with pesto, but the salmon was overcooked, though the bed of miso noodles was delicious. Then we saw The Force of Destiny. The singing blew me away, but for the first time in a long time, the plot of an opera disturbed me. "Leonora and Alvaro attempt to elope but are foiled by Leonora’s father. Alvaro’s pistol goes off accidentally and mortally wounds the old man, who curses his daughter. Leonora’s brother Carlo seeks to avenge their father’s death." Carlo and Alvaro save each other's lives in war, but Carlo is unpersuaded by this fact nor by the fact that his dad's death was an accident. He goads Alvaro into a duel. Alvaro escapes and becomes a monk. However Carlo finds him again and goads him into another duel.

The plot both stretched the limits of my incredulity and struck me as terribly immoral and illogical even by the standards of opera. Usually operas follow a terrible moral code. I don't agree that unfaithful lovers should be killed or that women should kill themselves for love, but there's a certain logic to the whole thing. In this case it just made no sense to me.

The scenes between the men were among the most improbable. They switch from fast friendship to dueling in five minutes. But through their impeccable gripping singing I was most transported. Vladimir Kuzmenko and Orlin Anastassov made their SF opera debuts. And I'd happily go hear Vladimir in any opera. He exhilarated me. Zeljko Lucic as Carlo made me believe in his vengenance, even though once he was done, I remembered again how it made no sense. Unfortunately Andrea Gruber as Leonara wasn't so alluring and I had time to think and maybe that was the problem. However I thought dressing Jill Grove in a bustier and shiny vinyl coat as a gypsy was inspired, but maybe I just felt that way about her singing.

Thursday, November 10, 2005

Little T speaks

Little T's smiling and scooting again. I feel such joy that I'm starting to have my son back.

He says "gah" a lot. Gah means something in Little T language, because it has many intonations, but I just don't get what it means. I asked him yesterday if he wanted a bottle and he said "yeah." I haven't heard any more intelligible words since. The previous word I heard was "bye" on Thursday though C says he said other words to him. Little T now has a vocabulary of four words: hi, bye, no, and yeah. However he says at most one word a day, so nobody but C and I know he can talk. When Special K knew four words, she said them over and over to anyone who would listen. The entire world knew she could talk. She had one Special K word "meh", but she kept saying it until C and I got what it meant -- food. It's such a contrast.

I took a few days off. Kinda hard to write when you have to hold a baby. Also Special K is having regression problems i.e an accident once a day usually accompanied by crying. I guess it's to be expected. This is the first time she's had any real problems, but it's also the first time Little T's been sick and not gone to the hospital and she's older now and perhaps better able to understand. So I've been holding her a lot too. A friend's taking her on a special outing tomorrow, which I hope will help.

But I started writing again yesterday. My non-fiction book's at 21,205. I'm hoping to have my book proposal done by Thanksgiving, but it may be unrealistic given how much baby and child holding still remains in my future.

If you enjoy the show Lost, you may enjoy this Lost Rhapsody.

Monday, November 07, 2005

Amazing news...but

This morning we had amazing news. Little T's platelet suddenly bounced back to normal (211) We're totally stunned. His tumor has never responded so quickly. We were expecting weeks of treatment.

This is our third round with it. The prior two times, it took weeks of steroids and Vincristine (chemo) before his platelet count returned to normal. Change was so slow. This time you can see drastic change. His arm circumference suddenly shrunk from 25cm to 20cm.

A slight worry is that his fibrinogen is now down to 156, which is below normal. It's probably because it's being used to clot off the tumor. At least we all hope so!

We'll give him two more doses of massive amounts of steroids. Then we'll cut back to half doses of massive amounts of steroids. We go back next Tuesday to see how things are going.

Steroids are awful. Not as bad as chemo, but steroid change his personality for the worse. I think of athletes on steroids all the time. No wonder they get into fights all the time and beat their wives. His doc says they're different 'roids. Whatever. They suck.

Yesterday I looked at the four syringes of medicine that C was going to give him and my heart broke just a little. In his early days, we gave him as many as 8 drugs at one time. Gods knows how all these drugs interact and they don't run drugs trials on babies. But my little observations are these. He used to smile at least once an hour. Now he smiles once a day and cries at least once an hour. He wants to be held most of the time if he's awake. He used to like to scoot about on the floor most of the time.

He flies into 'roid rages a lot. Little things just tick him off. Like if I hover over him too much. If I take away a toy. If someone is too noisy. His face contorts into this furious mask like the Incredible Hulk. He starts screaming very loudly. He behaved this way as a baby and I always said he was really a sweet guy. Sometimes the nurses would just look at me like "yeah right." Now I know he is normally a sweet guy.

At least I've removed one source of his rage. Normal platelets means no more hovering over him whenever he scoots about or pulls up. And I can count the doses until we cut back to half doses. Maybe that will take away the 'roid rage. Or at least bring back the scooting.

Anne Lammot's book Bird By Bird is one of several that changed my life. People ask "how do I get through this?" One way is dose by dose, day by day, hour by hour. Sometimes minute by minute.

I will tell you we also learned today that this will probably not be his last relapse. That some kids with his type of tumor are on Vincristine aka chemo for 3-5 years. So in some twisted sense, Little T's "lucky". Or maybe we're just parents and a doctor who won't take that course of treatment. Who knows? There's no standard course of treatment for Kasabach Merritt Syndrome, because it's so rare.

I also learned that the relapse may have been triggered by his getting the stomach flu. Or maybe not. So no more playdates. And we have to treat him as immuno-compromised for the rest of the winter. Though he is in fact immuno-compromised right now, because of the steroids.

But honestly right now that's more than I want to deal with right now. I'm mostly telling you, so you won't be surprised if you read that he had another relapse. And if you live locally, why you won't be seeing Little T anytime soon.

But I guess if they keep resolving as quickly without the complications that have landed him in the hospital five times, then it seems somehow manageable. I dunno. I can't really think about it too much. So I just think about today and how his platelets are 211 and just two more doses.

Saturday, November 05, 2005

Scare leads to better news

We had a bit of a scare last night, because we saw petechiace on his left forearm. We were worried that his platelet count might be dropping to the dangerous internal bleeding level. So this morning C took him into for another blood test. His platelet count was 97! Not normal, but definitely out of the worry if he bumps his head stage.

The platelet numbers are points in time. We have two numbers. So far, they indicate an upward trend. We hope it stays that way. We hope it means the tumor has started shrinking again. But we need more data and more time to know anything. We just have to watch and wait.

We also had another small victory. Armed with my list of best blood drawers, the blood draw took only one try. Previously it took at least three tries with lots of painful digging around the vein. Last time in desperation I asked what I should do and I got the list.

Friday, November 04, 2005

Little T's tumor is regrowing

Little T's tumor is regrowing at the ends, though it continues to shrink around the middle. It would all be fascinating if it weren't my son. He's back on Amicar and Prednisolone (steroids), which means that he's immuno-compromised again. His tumor consumes platelets again. Kasabach Merritt Syndrome returns again.

Unfortunately his low platelet count (40) means that if he bumps his head, he can have a brain bleed. He's starting to cruise and he's wobbly. Normally he falls on his head every day. Not a hard fall, mind you. Just a slight bonk on the head. Not even enough to cause crying sometimes; certainly not enough to cause a bruise. He only has one functional arm, so he can't brace himself. So no more cruising or pulling up for him until his platelets come back up on their own. And we have to watch him very carefully. His platelets get measured again on Tuesday. It'll be a long few days.

We thought very carefully about getting him a platelet transfusion, but we decided that we don't want to risk platelet rejection, and the IV would be very tough on him. We'd still have to watch him just as carefully since we don't know what his platelets will do between now and Tuesday. And Wednesday was probably his lowest platelet point anyway when he had the bruising and petechiace. Each platelet transfusion increases the risk that he'll reject them. He's had so many platelet transfusions.

Thursday, November 03, 2005

Health care frustrations

Little T's bruises and petechiace are fading. I take him to Hemo tommorrow. Something bothers Little T a lot. Probably his left arm, because whenever I move it, he screams at me. Actually he's screamed at me all day unless I hold him. I'm typing right now, because I have a respite care worker here. Thank the gods for that.

Yesterday I spent the entire day wrangling with our broken health care system in some form or another. I did get excellent care for Little T. I also emerged with a flu shot for Special K. I got special dispensation from the kids' ped to get it ahead of the flu clinic, which is two weeks away. I need to get us vaccinated before the Thanksgiving relative germ fest. So Special K got her shot today. She said "Shots hurt" with some surprise. I feel a little bad that the shot contains thimerosal aka mercury. But I'd feel even worse if Little T catches the flu and winds up in the hospital again.

However I failed to get anywhere in getting care for myself. I may end up paying for my physical therapy (PT) out of pocket. Through C's friend and Little T's OT, I found Nancy Byl a wonderful PT at UCSF who treats people with dystonia. I want to drive on the highway again. I need PT to retrain myself. Regular PT won't work. Telling me "do this" just results in jerking. And in fact when I had PT after my car accident, they just wouldn't do certain exercises with my upper body, because I would jerk too much. But tomorrow is another day. I just emailed someone else to get help with my appeal to the insurance company.

I also failed to get an apt with a local neurologist who specialises in movement disorders. I'm not sure if she's the right person to see anyway. I saw her in 1999 and she was very keen on brain surgery! At that time she told me to try a few drugs that didn't do anything for me. Her nurse suggested the Parkinson's Institute. I just gave them a call. Unfortunately they're not covered by any HMOs and it would be $385 a visit. We would cheerfully pay that much if we knew it would do any good, but no-one knows if my movement disorder is related Parkinson's. Maybe my maternal grandfather had it. But he was never officially diagnosed. It's all so frustrating.

But still, I started writing again on Wednesday. Back to my daily word quota of 500 words. Book's at over 20k now. I worked out a chapter outline on my non-fiction book. It will be 13 Chapters. Chapters 1-4 are basically done.

My big gay post

My college friend Beth Stroud lost her case on appeal and has been officially defrocked from the United Methodist Church for being gay. I think she's very courageous. And her case has opened some minds, even if the outcome wasn't what she wanted.

About the same time that I learned that George Takei (Sulu from Star Trek) came out as gay. And I just shake my head when people wonder why it's a big deal. It's still a big deal to be a gay Asian male. How many do you know who are out? In fact how male celebs do you know who are out who aren't basically retired? I know... um George Michael. And he was always singing about sex.

I can't think of a single female Asian celeb who's out as lesbian or bi. Maybe I'm just not up on my celebs. I'm not exactly a celeb follower. But what I do know is the number of known lesbigay celebs is not anywhere near 10%.

I wish it wasn't such a big deal. But we still live in a world where being queer still has serious negative consquences.

Wednesday, November 02, 2005

First word and worrying symptoms

Yesterday Little T seemed quite recovered from his illness. He said his first word. He said "bye" clearly and distinctly as his sister left the car for preschool. He has uttered no other intelligible words since unless you count 'gah' and 'yeah yeah yeah yeah'. At this age, Special K loved to repeat words over and over again. She made sure everyone knew she was talking.

I think Little T might have said 'mama' and 'dada' on several different occasions, but I'm not really sure. He combines it with other noises and says it once. He has a speech evaluation on Saturday. I'm not sure what the speech therapist will make of him.

Today we woke up to find that Little T's left upper shoulder was covered in huge bruises and petechiace. We tried to remain calm, but this has heralded trips to the ER leading to one diagnosis of a relapse of his tumor and several false alarms. I lean towards the latter. We call the Hematology nurse practioner. She's very nice to me. She said "We're keen observers." We decide that the stomach flu combined with the antibiotics has probably lowered his platelets sufficiently to cause the symptoms. We watch and wait. We'll see if the bruising gets worse. So far so good. We'll take him in on Friday. He was scheduled to go see Hematology on Tuesday anyway.

I go to my previously scheduled neurologist appointment. I get the flu shot. I call Special K's doctor to arrange for her to get the flu shot. I tell C to get the flu shot. Little T can't get the flu shot until December. He can't get any shots until six months after his last chemo. Until then, his immune system won't produce enough antibodies to make the shot worthwhile.

I thought Little T was at the point where he could just get sick and we wouldn't have to call doctors, but clearly I was just wrong. And I really should stop saying things like 'it's nice to have a normal illness." It just tempts fate. And he's just not normal. I'm not normal either, though my disability is far less serious. And the expectation of normality hurts.

So please send Little T lots of platelets and tumor shrinking vibes his way.