Ivy's Thread

[jdhowland]

Thought about posting something in the qigong/medicine thread about this, but since some were kind enough to inquire and send good wishes in the quit smoking thread I thought this might be worth a separate vein that I can track more easily.

My daughter, Ivy, is home after a nearly a year "outside," as we say in Alaska. She has been a patient at Seattle Children's Hospital for all this time. After a year of suffering a life threatening and undiagnosed illness she eventually developed a peripheral brain tumor that could be biopsied. It was medulloblastoma, a common form of childood brain cancer, but her symptoms presented in such an odd fashion that the medicos had no clue. We were calling it "Ivy's disease."

After carving a chunk of muscle out of her thigh and a three-month wait for results, the tests for mitochondrial disorders came back negative. I was relieved, sort of. Her oncologist said that what he saw on her brain scans were lesions, but he was "95% certain" that they were not tumors. Her scans were sent all over the country in hopes that someone had seen something like it. Lyme disease? Probably not but the tests aren't reliable. Thyroid malfunction? Some felt certain, but that turned out to be a symptom rather than the cause. No treatment for over a year for anything but secondary symptoms for my thirteen-year-old girl.

Then, last September, we got a call from our local hospital where we had just completed another round of imaging. "Seattle wants Ivy there tonight." I had never been so afraid for my child. The Lear jet showed up three blocks from my house. The handsome young medics flirted professionally with Ivy and made her smile. My wife, Danette, got on board after they strapped Ivy down and started her IVs, (she still rolls her eyes when anyone mentions Ivy's IVs). That was the last time either of them saw their home until the day before yesterday.

The latest tumor now proved to be operable. A little mass just behind her left ear. Then the waiting. You parent's know what it's like. Ivy was relieved to finally have a diagnosis. Her mom and I were stunned, not least when hospital staff members blurted out "medulloblastoma" during rounds, not knowing we had not been consulted about the results. The rest is inoperable, too deep. But Ivy was admitted to a clinical trial of a new proceedure involving a course of radiation + chemo followed by another course of chemo.

Her neuro-psych exam last week showed that her mental faculties are back and appropriate for her age, slightly better than average in language and math concepts, as we might have expected. She's a poet/songwriter/ singer and artist. Everyone was amazed that the chemo didn't damage her hearing. She still hears like a bat. I call her "Lum Gwai" for her notorious ability to spy on conversations. Most of all, the docs were amazed at her strength and her lung capacity even when she lost 30 pounds and looked like a walking stick (except she couldn't walk, but you know what I mean).

So here's the thing: Ivy has been a gung fu girl (didn't the group Blondie do a song by that title?) since she was three years old and has been able to stagger me with her kicks since she was nine. She's 15 now--spent her birthday in the hospital--and still shows that amazing strength even when she can't walk or talk normally. I asked Ivy to continue doing her noi gong whenever she had the strength. Her mom called me up a few months ago to report that she walked into Ivy's room and found her standing on one leg doing slow-motion exercises. So I think she kept at it.

Sorry for the rambling letter, but this won't mean much unless you know her. I'll try to update this once in a while, with her permission, of course and see if I can be objective about her progress. I'll let her rest for a couple of days and then Ivy will join me for my next internal class on Monday.

Be well.

[jdhowland]

My daughter corrected me when I mentioned her standing on one leg a couple of months ago. She said that when Mom walked in and found her exercising she was actually holding on to something for balance so it didn't really count. Then she looked thoughtful for a moment and squatted into a diu mah stance. She slowly lifted her "hanging" foot and grinned broadly. "Daddy, I can do it if I go low!" That was a good moment.

She has fallen three times since coming home, yet she wants to try her bicycle. Hope she waits a few days. The first thing I want to focus on is her balance and spatial awareness.

She does breathing exercises regularly. The docs in Seattle were impressed by her lung capacity. That could be a genetic inheritance. My cousin and I were in a high school biology class together when there was a class experiment involving hyperventilation and timing how long each student could hold his breath. Only a few students made it past the one minute mark--I think the 3rd longest time was around 1 min 15 sec. My cousin and I both passed the three minute mark. I think my record was while driving with a friend through the Pali tunnel. He wanted to know if I could hold my breath until we saw daylight. He timed me at 4 min. 20 sec. Funny how our brains seem to be screaming for air but it's really about getting rid of the CO2. Anyway, we have no concerns about getting Ivy's breathing back to normal. In hospital when she was on a ventilator the nurses kept having to adjust the monitor so the alarm wouldn't go off every time she stopped breathing for a few seconds. I told the nurse, "Hey, she's a Howland. Four breaths per minute is normal for us."

Ivy suffered some cerebellar damage so our main effort will be toward getting her coordination back. Muscle response is normal. Qigong/kung fu training is a great way to measure her progress without depending on the evaluations of those good folks in physical rehab.

For a year my daughter's symptoms were undiagnosed and I started calling the disease "Ivy's BLUEs" as an acronym for Brain Lesions of Unknown Etiology. This is sort of a blog about using every weapon in the arsenal to fight the BLUEs and noting the progress.

[jdhowland]

Ups and downs...and, gradually more ups than downs.

First of all, Ivy now has some hair. Good for the old self esteem. She never wears wigs but has a lot of cool hats. I like it when she goes bareheaded--it shows her confidence. She has a kind of Annie Lennox thing going on and it looks great.

Ivy wanted to go to training last night so we dragged little brother along and worked a lot of drills. Our style has a lot of groundwork and my daughter really likes breakdancing so we spent a lot of time on the floor. Her flexibility and strength are unimpaired but balance is tricky so the floor is a nice place to be, especially since some of the groundwork drills make even me dizzy.

Got through the whole of jaahp mah with modified stances and kicks. Single-leg is risky at this point so we tried a diu mah/hanging foot stance and I had her place her toe on objects of various heights to give some feedback. Ivy discovered on her own that she could practice heel thrust kicks by doing the seven-star step with the heel skimming the floor.

Steady progress in push up drills: When she came home she could do three good ones. Last week it was ten. Last night she did twelve.

One of our best exercises is walking meditation. It takes about 30 minutes to circle the room once. I generally walk at about 2 steps per minute and when we started doing this together Ivy's pace was about twice that. Last night she was able to slow it down considerably and had to step only a little quicker to find her balance.

Worked on a line from ting gong kyuhn for coordination. Lots of twisty moves with the arms doing very different things at the same time.

Tossing the mung bean bag was great. I was afraid it would knock her down. No way. She intentionally practiced using peripheral vision, not turning her head to look at it. The neural links are all there, good fine motor skills.

We finished with some visualization training using the idea of running or climbing as the cue and a little vocal work.

Lots of new discoveries and lots of smiles.

Be well.

[jdhowland]

Kung fu girl made a good discovery during last Friday's training session. Her sense of balance is unimpared, only the muscular coordination to correct her position is lacking. The cerebellum BLUEs, again.

She's off to Seatown today for testing. This will include her first post chemo MRI. God, i'm scared.

She, apparently, is not thinking of such mundane things. While in Seattle she will make a music video for a song she wrote and recorded a couple of years ago. The Make A Wish Foundation has made arrangements to have the video professionally produced.

I'm actually more proud than scared.

Be well.

[Northwind]

I only today found this thread.
Congrats on the great leaps forward and definitely keep us posted.

[jdhowland]

I only today found this thread.
Congrats on the great leaps forward and definitely keep us posted.

Thanks, Northwind. Always appreciate the good wishes. I hope Ivy will join the forum and add her own progress notes someday. I only post with her permission and I think she knows this is largely for my own peace of mind.

By the way, "Northwind" was the name I gave to my first school back in the '70s to honor the northern roots of my training methods, my own Alaskan heritage, and to carry on part of the Bak Sing name. I'll have to follow up on your suggestion and ask you how you chose the name.

Be well.

John

[jdhowland]

Ivy's MRI indicates no growth in the tumor areas over the past three months. Heavy sigh of relief.

Metastatic medulloblastoma is considered a "high risk" form of cancer. We cannot say that she is cancer free but she has a fighting chance and she is a fighter.

The filming has been completed for the video of her song "At Ease, My Men." It was written to honor one of her teachers who was on duty in Iraq at the time. I think of it as a kind of anthem for returning soldiers and the ones who didn't return. Hope to post a link to it when production is finished in December.

Thanks, everyone.

jd

[jdhowland]

After several days of relative weakness and fatigue she felt better and made it through a full training session last night.

Standing jong: 2 postures @ 5 min. ea. On her own, she experimented with sei pihng mah, thighs parallel to floor, arms extended. Slightly modified gwai mah (thighs adducted-- not sure why)--she was unable to do this last week.

Most improvement shown in modified duhk luhp mah (20 seconds, up from previous best of 12 seconds) and feet are beginning to pivot (less w/ full che san--seems to need more stability on the floor but full 90 degree pivots w/ less trunk rotation).

Nice work, Lynners.

[jdhowland]

A rough ten days. Had to fight off a virus with meds, then several days of fainting. Doc can't offer any explanation for why the fainting came back but doesn't think it has anything to do with her meds.

Then a big change last night: when I got home from work she was dressed and ready for training!

Did 45 min. of slo-mo stuff and loosening, concentrating on the upper back. Upper traps and L parascapulars are tight. SCMs are good. Our basic hei gung ex has a move in which the neck is supposed to release and "float" as the hands are brought down, but Ivy reported an increase in tension as the shoulders sank. Must do some hands-on and see if it improves.

10-15 min. of yiquan style freeform. Ivy really seems to like backfist moves like gwa and deng cheui. Lots of elbows, too. Did some bag tossing and Ivy noted that her right hand grip didn't feel as strong as it should. Then she put on the gloves and whaled on me. I held a shield so she could do head shots. We worked on basic jab-cross for about ten minutes and then some freestyle. Trunk rotation is somewhat inhibited and her jabs tended to hook until we corrected her elbow position and she got it. The most surprising thing is that her footwork never faltered. After a few days of barely being able to stand she was chasing me all over the floor.

[mickey]

Hi,

This is my first time seeing this thread. I hope your daughter's recovery is a full one.

Are you aware of this?

www.medicalnewstoday.com/articles/63544.php


mickey

[jdhowland]

Hey, thanks mickey. Nope, I hadn't heard of that one. Sounds promising though. Knew about the low carb aspect. Since surgery isn't an option we are looking for the healthiest lifestyle approach.

[mickey]

Hi,

Do as much research about it as you can and get your doctors involved, too.

mickey

[jdhowland]

Back in Seattle Children's Hospital with good news today. Ivy's MRI looks great--not only no new growths, but some areas seem to have cleared up a bit.

The music video premiere was also a success. It was held Wednesday at Seattle's "EMP" in Microsoft co-founder Paul Allen's private lounge and theater. The video was great in itself, but also good as a log of progress: Ivy still had difficulty walking when it was filmed and now looks and sounds so much better. The credits have yet to be added and a couple of slight adjustments of technical details, then it's all hers--she has full copyright to post as she pleases.

Will head back to Alaska tonight, very tired and happy.

Be well, everyone,

jd

[Northwind]

W00T!
Great news all around!

[jdhowland]

http://www.king5.com/new-day-northwe...111628844.html

This shows a minute or so of the video.

The media got the message garbled again and posted what they thought the public wanted to hear. Ivy kept insisting that her wish was completed at the end of production and had nothing to do with later publicity dreamed up by the Make A Wish Foundation. She wanted nothing to do with pretensions to being a rock star. She wanted no mention made of her cancer. To her it's all about the music, not about her. She does not travel to Seattle for "chemo." That is so over for her. She does not want to be viewed as the sick girl who used to be able to sing. She wants her message to be heard.

The video is almost completed (only needs titles, now). The tv studio was having trouble formatting the disc that was brought to them so they weren't able to show it all but this is a good glimpse. We will save the dramatic ending for later when we have the completed version.