As the Beatles song goes, I've been getting by with a little help from my friends (and my family).

Yesterday Little T got among his best platelet numbers so far this time -- 146, fibrinogen was 156, so I hope his course of vincristine will be short. He cries more and I think he's lost some weight, but so far (knock on wood) he doesn't seem to be losing his voice/hair and his pain seems manageable without drugs. The effects seem to be cummulative, so I hope the tumor responds as well as it is now and he only needs four doses like they're telling us.

On Saturday our respite care worker bailed on us, because Little T has a cold. They're not supposed to babysit kids who are "sick". How that's interpreted is left up to the respite care worker.

On Sunday my parents came to visit for supper. My mom helped out a bit too which was nice. On Monday we visited our friends Jenny and Sam. Little T had a great time pulling up on their stuff. I also did a bunch of shopping and bought some art supplies for Special K and a pile of binkies for Little T among other things.

I've basically been dealing by not dealing with too much. I got overwhelmed and started having bad thoughts. I hadn't thought them for a long long time. Not since college really. It just means I'm too overloaded and need to cut down on my responsibilities. Since I can't cut down on my family obviously, other parts of my life go dormant. And I'm afraid part of that (at least from the standpoint of my readers) is not posting here too much. When I get on the computer, I can choose whether to write, or to post here, or to play World of Warcraft, and lately the complete fantasy has been winning. I know this phase will pass. Because both C and I played WoW intensively around Christmas when things were really bad. Then things got a bit better and we got tired of it and did other things. C is already showing signs of getting tired of things as we're starting to resolve our financial thing. Though it still majorly stresses me out.

It really hasn't quite sunk in yet, even though we knew it was coming, but Little T is going back on chemo, perhaps as I'm typing this. Little T's platelets today were 67. Not good enough to stave off Vincristine. I would say my heart is breaking on Valentine's Day, but right now I mostly feel numb. I'm still quite sick. My head is all stuffed up and my head aches. I was too sick in fact to go to clinic today. Poor C had to take Little T on his own. And it will take several days for Little T to show the effects of chemo anyway.

I've turned off comments, because I know you care, but I guess I'm okay with being numb right now. If you want to help and can visit, you can take Special K out if you like kids, or go out with me for tea or a meal if you like me, or bring by treats if you like treats. Or you can send a real or a virtual card or little treats. Special K in particular is cheered up considerably by cards, little presents and little outings, but it helps all of us more than you know. Not something I admit very often, but I'm in this weird state right now.

Little T's platelets hold a steady state at 91. His fibrinogen went up to 188. He gained weight to 10490g. His hemo doctor is concerned about his blood pressure though it looks like we don't have to put him on meds, and we're approaching the 3 month mark. So we're going to try weaning him just a little bit and hope that his platelets don't plunge like they did last time. His hemo doctor gave us this scary paper about Who knew? is a much harsher form of chemo given a couple times. Vincristine is a "gentler" form of chemo given over longer periods. But was given for a different type of hemangioma and some of the papers we've read contain very similar language about Vincristine.

He was measured at 70.6 cm. I thought that was growth, but I looked back and he measured at 71cm in November. So I think he hasn't grown at all since the steroids. He lies down to get a height measurement, so the height depends on hard they pull his leg.

Today he also had a renal ultrasound, urine bag for urine test and extra blood taken for extra blood tests.  Unfortunately the lab's computer was down, so the tech didn't know to put the blood on ice, so he has to get his renin level checked next week instead.

I called in his BP stats just now.  They'll call back and let us know if he needs to go on BP meds.  I think the answer will prolly be no.  His measured BP got lower as we got more competent at measuring it and making him fuss.  We don't get 120 or higher anymore or scary stroke 150 anymore (knock on wood) I removed the life-threatening tag from the first BP entry. Whee! It felt more good to do that than it probably should.

( More BP stats )

This morning Little T's blood pressure was 98/61. Keep with that number, Little T! I'm so relieved that things weren't as bad as they told us on Tuesday. I'm not sure if he'll have to take another medication or not, but really it's a minor worry compared to everything else. I'm assuming for now that his high blood pressure is due to the high doses of steroids, a limited time condition. His hematologist is telling us that around Feb 7, he has to be weaned off steroids whatever his platelet numbers. And that actually leads to my big worry -- Vincristine. He'll have to go on Vincristine/chemo or something else if his platelet numbers aren't normal and he's not on on steroids.

The signs don't look good right now since platelets of 91 aren't normal, but we have some time. Still it hangs over my head. And not being able to take Little T anywhere weighs me down. On rainy days when it's dark and gloomy, I hide. I drizzle. Today when it's sunny, and friends have contacted me to come play, I feel almost my old self. I've adapted to this strange life of constant handwashing, isolating my sunny social baby, and visiting the hospital once a week.

At the same time I'm embarrassed that I "made a fuss" about his high blood pressure. I was brought up to believe you don't make a fuss about anything. Like my grandmother had breast cancer and no one talked about it. In fact for a while I wasn't even sure if she actually had it. I still find it hard to talk about this stuff. And often I don't mention things we're told might happen when I don't think they will. This time I really did think there was a good chance he'd have to stay at the hospital for high blood pressure. That's what his hematologists were telling me and unfortunately they haven't been wrong about hospitals stays before.

The funny thing is that whenever I have "talked" about things as they happen, for whatever reason, we've had a better outcome than when I "talk" about it after the fact. I guess that should encourage me to do it more often. I'm trying.

Little T's platelets came back today at 87, the lowest in a while. His hemo doctor talked about putting on Vincristine again, aka chemo if his numbers don't improve. Little T has been on high doses of steroids for over two months. His hemo doctor's not comfortable having on him high doses for too long due to steroids' long term effects. He's reaching the time limit where he needs to be weaned off, or put on Vincristine. Damn. His platelets were 112 last week, the highest in a while, so things were looking like we could wean him off steroids, and he was going to make it just on steroids. We're hoping that today's number was just an anomaly. We'll find out more next week. I can't help worrying. I need a hug. I need good vibes.

Through it all, Little T laughs and smiles, except when he flies into 'roid rages. He wants to play with other kids. He doesn't understand why he can't. The social isolation of the steroids is hard to take, but it will break my heart if Vincristine takes away his voice again.

The Water owl is a rare strange bird, so I provide you with this field guide to the medical issues that form a background to her daily life. I hope this background makes things less confusing, but maybe not. Learning the habits of a new animal tends to be confusing for anyone. I chose thirteen questions, because it worked out that way and thirteen is my lucky number.

1. Why does Little T have a feeding tube? He doesn't eat enough on his own. The treatments from his vascular tumour messed up his eating. The tube allows us to pour liquid food aka formula down the tube into his stomach. At first he had an NG tube The tube went through the back of his throat down his esophagus and into his stomach. Now he has a Mic-key gastronomy tube that's a tube directly into his stomach. Click here for more details about his Mic-key
2. What is a vascular tumour? A vascular tumour is a proliferation of nonfunctional blood vessels. Picture if your blood vessels grew uncontrollably and formed tangled balls. Hemangiomas and vascular tumours are relatively common, but fortunately most are pretty benign medically. Unfortunately Little T's tumor got so large he developed Kasabach Merritt Syndrome(KMS) It's very rare like .1%. For most, KMS is the bogey man that doctors state is a risk like how they state there's a risk you could die during routine surgery.
3. What is Kasabach-Merritt Syndrome? Kasabach-Merritt Syndrome (KMS) is a very rare condition in which a hemangioma or vascular tumour gets so large and invasive that blood flows into the tumour and gets trapped there. Like cars stuck in a traffic jam, enormous amounts of platelets and fibrogen (blood clotting factors) are consumed. If untreated with blood transfusions, KMS kills. Sometimes patients don't make it anyway. C and I have read mortality rates anywhere from 10% to 37%.
4. What do you mean by giant? How big is his arm now? When Little T was born, the circumference of his left arm was 24 cm, or about the size of my arm and looked like a balloon. My brother said he looked like Popeye. Here's a photo. Now his arm has shrunk a lot and at its widest point is about 15cm. It's also much more differentiated like a proper arm.
5. What treatments made his arm shrink? In the NICU, he was on Interferon. It made him lethargic, and possibly depressed. It killed his appetite. After his relapse of KMS in January, he was put on Vincristine, a type of chemo instead. It caused neuropathy (temporary partial paralysis) of his legs and vocal cords. Vincristine made him feel nauseated and gave him reflux. It also made him lose his hair. Both times he also took massive amounts of Prednisolone, a type of steroid. When he was on Prednisolone, he ate about 3/4 of his recommended daily calories, according to his nutritionist but the steroids retarded his growth. When he was taken off the steroids, he started eating even less, because the steroid stimulated his appetite. I wrote a lot about his eating in my personal essay "His Tube Ate My Boob and other Feeding Fables" that I've submitted to Brain, Child.
6. Why was Little T on chemo? Did he have cancer? Well, that depends on how you classify cancer. By the strict medical definition, no, he doesn't have cancer. However if you consider cancer to be an invasive tumour that is lethal if untreated and therefore you must attack the tumour with harmful methods like chemo and massive amounts of steroids, then yes he does. And we're actually part of an Children's Oncology support group. We went there at first, because there was nowhere else to go. We wondered if we belonged there, but as we told our story, all the other parents there had had similar experiences. It was incredibly sad and comforting at the same time.
7. Can his tumour regrow? Unfortunately it can and has. His hematologists thought that it wouldn't and he had his Broviac (central IV line) removed in December. Unfortunately it regrew in January and he had a reoccurrence of KMS and was hospitalised.
8. Does it hurt? Well, the doctors tell us that the tumour itself doesn't hurt. However the tumour compresses the surrounding tissue and nerves and causes Compartment Syndrome. The massive swelling from his tumour cuts off sensation and ironically blood flow to his lower arm and fingers. At first he didn't move his arm or fingers at all. Now he moves his fingers somewhat and shrugs his shoulders. So the process of growing doesn't appear to hurt, but the process of shrinking does, perhaps because circulation and sensation return to his arm.
9. What's the long-term future for his arm? No-one really knows. We're hoping he'll be able to use his arm. Right now he's rather lopsided, and he just learned to roll over at 10 months, because his left arm is so heavy and non-functional. We're hoping that through physical and occupational therapy, he'll be able to regain strength enough to crawl and eventually walk.
10. How many times has he been hospitalized?
    1. NICU - Birth to 6 weeks old for KMS
    2. December 2004 (5 days) for a urinary tract infection caused by being without liquid because he had an operation to get his Broviac removed. He had another Broviac installed after his relapse in January.
    3. January 2005 (10 days) for a reoccurence of KMS
    4. February 2005 (7 days) for RSV a few days after he was released from the hospital, so he probably caught it from the hospital.
    5. June 2005 (7 days) for line sepsis. His Broviac got infected.
    6. July 2005 (48 hours) recovery from G-tube surgery
11. You mention you have a movement disorder. What is it? I have Myoclonic dystonia a very peculiar rare neurological disorder that affects fine movement. Neurologists get excited when they see me, because it's so rare. Basically my head or arms or hands will randomly jerk when I perform small activity. It appears to be nonprogressive and in my case, it also only affects my upper body. Myoclonic dystonia is thought to be caused by a defect in the basal ganglia. The analogy that works best for computer geeks is that I have line noise in my basal ganglia that causes me to jerk. I agree with this theory, because it does seem to take me longer to learn fine motor activities. But once I've learned them, I do just fine, except for the random jerking.
12. What's the basal ganglia and what does it do? The basal ganglia help the brain perform more complex tasks. For example, after you've learned how to write or type, you don't consciously think about how your hand moves, you just think I want to write or type a particular word. Your basal ganglia helps you coordinate all the complex movements needed to perform these actions. Remember how when you first learned how to write or type, you had to think about everything and it was very slow at first. Well that was because you didn't have the proper neural pathways in your basal ganglia yet.
13. Is your medical condition related to your son's? I'm told they're not related as they affect two entirely different systems. However I think the answer is that no-one knows the true cause of either condition, so it's impossible to know with current medical information and technology.