Life is Fragile and Precious

Steven and St. Jude patient Elizabeth

We attended a fundraising dinner last night for St. Jude. It's an annual event, we went last year also.

I bought new clothes for the boys for last year's dinner. After that buying experience, I was most grateful to see that last year's clothes still fit.

Steven's friend Elizabeth was there again this year. Steven loves her, she's adorable. She's almost 8 years old, but she's the size of a 3-year old.

Her small size is due to her condition, osteogenesis imperfecta, or brittle bone disease. Children with this condition used to die young, St. Jude is one of the main places doing research in the treatment of this rare disease, and recent advances have greatly increased the life span of these kids.

Elizabeth has had four broken bones this year, but she looked great and was walking on her own with the help of a walker.

Zach got moved to a regular room yesterday and he's started rehab. He's able to walk on his own, but with weakness on his left side. He may get to go home tomorrow, an answered prayer.

I keep trying to sit down and write something cheery, but I'm not having an easy time with that this week.

We just found out that our four-year old St. Jude friend Jay lost the battle with his brain tumor today. Jay was at Ronald McDonald House when we were there, with the same sort of tumor as Steven.

The last time we saw Jay was at Steven's followup visit last August, Steven danced with Jay (dressed up as Woody from Toy Story) at a country western dance for the patients.

Godspeed, little Jay.

Life is fragile and precious...

- Kathleen

Zach Continuing to Improve

Zach is continuing to improve.

There is a possibility if things continue in the right direction that he will be moved from ICU tomorrow.

He's got some weakness from the stroke, but as long as he doesn't have another the chances are that he'll regain what he's lost in rehab.

Zach has had such a rough time with his tumor, which is slow-growing and which many patients live with successfully for a long time, sometimes decades.

Zach's problems are due to radiation-related side effects. Zach had radiation the same time as Steven, we met them in the radiation waiting room.

Zach's radiation was targeted, not to his whole brain like Steven. The radiation was targeted at his tumor, which was inoperable due to its location in his optic tract.

Following radiation, there was a lot of swelling in Zach's brain, which was controlled by large doses of steroids (hence the weight gain in the photos).

Zach also suffers from debilitating migraines, most likely due largely to the location of his tumor.

After nine months on steroids and massive weight gain, six stress fractures were found in his spine after a fall. Zach had developed osteoporosis from the steroids.

Zach started calcium and vitamin D supplements to help strengthen his bones and counteract the effects of the steroids. After several months on the calcium supplements, Zach developed kidney stones.

He spent most of last summer in and out of the hospital in horrendous pain as he passed one kidney stone after another. Needless to say he stopped the calcium, and I took Steven off of his calcium also after seeing what happened to Zach.

Over the summer, Zach had a couple of episodes that seemed to be TIA's, or mini-strokes.

After a followup MRI last fall, they noted that Zach's tumor was stable but that he was developing stenosis of the arteries in his brain.

He had an angiogram in November and that's where they discovered that his carotid artery was 80% blocked and that he would need surgery to correct the problem.

Bypass surgery is not very effective in children, it doesn't last very long, if Zach had bypass surgery he might have had to have it repeated again in a couple of years.

Zach had a procedure called encephalo-duro-arterio-synangiosis (EDAS) to correct his condition (called moya moya syndrome). A very simplified description of the procedure is that it's like taking a cutting of a plant and sticking it in water and waiting for it to grow roots, basically some pieces of blood vessels were stuck into Zach's brain and the hope is that they will grow and make new connections.

The surgery itself was a success, but it will take 12-18 months for the new blood vessels to grow.

And sadly, it seems that Zach was one of the 8% of patients who have a stroke after surgery. And he is still at risk for another stroke.

His condition is improving now and we pray he keeps moving in that direction.

Hang in there, Zach.

Update on Zach

All our prayers are being heard...

Zach woke up this morning and was responding to his visitors.

He's been improving throughout the day and is amazing everyone.

He's still in intensive care, but things are looking up.

Steven was taking it really hard, we are so grateful...

Please Pray For Zach

April '04 Zach came to visit Steven during his 4th stem cell transplant

Please, please pray with us for our buddy Zach.

We met Zach at St. Jude when we arrived there in October 2003 for Steven's radiation treatments. Zach is a year younger than Steven, and he had radiation at the same time for a different sort of brain tumor.

August '04 Steven and Zach at Elepalooza during Steven's first followup visit

We've become very good friends with Zach and his family (he has four brothers).

Although Zach's brain tumor is considered a benign, low-grade tumor with a relatively good prognosis for a pediatric brain tumor, Zach has had a very rough time of it.

November '04 Steven and Zach waiting for their brain MRI's

Zach has stenosis of the arteries in his brain, a somewhat rare side effect of radiation to the brain. Last fall they discovered that the carotid artery in Zach's brain was 80% blocked.

Last Thursday Zach had revascularization surgery in an attempt to cause new blood vessels to grow in his brain to compensate for the blocked blood vessels.

November '05 Steven and Zach at Le Bonheur hospital after Zach's angiogram

He came out of the surgery like a champ and went home Saturday morning.

But he returned to the hospital late last night due to a debilitatingly painful migraine and coordination issues.

March '06 Steven and Zach playing foosball at Grizzlies House

He worsened through the night and an MRI today revealed that he had a stroke. Zach's symptoms continue to worsen and he's been moved to intensive care.

They can't do anything but observe him, because of his recent surgery he is not a candidate for any of the treatments for stroke.

We love you Zach.

- Kathleen

Zach's caringbridge site
Zach's thestatus site (id=ross, pwd=reason-mail)

An Octopus's Garden

Steven with two sea sponges

Steven's fifth grade class had a field trip to the Floating Sea Lab in San Diego Harbor to experience our local sea life.

The dock was teeming with sea birds

We took a small boat, just Steven's class was on board, along with the teachers and parent volunteers.

The boat was equipped with all sorts of equipment for measuring the water temperature, the depth of the water, the color of the water (an indicator of the amount of plankton), the direction of the current.

One of the creatures captured was a sting ray

Also on the boat were nets for capturing sea creatures and for scooping up samples of the sea bottom.

This sea bird caught a fish

The kids functioned as deck hands, lowering the nets into the water and bringing them back up with sea life.

They sampled mud from the bottom and sifted through it to find mud-dwelling sea creatures.

Steven with a sample of plankton

They trapped plankton in nets and then looked at them under the microscope to identify the different types.

We learned that the reason the water in Hawaii is so clear and lighter in color than the water in California has to do with the large plankton population in our southern California waters.

A sea bird with seals and sea lions in the water behind the dock

The boat pulled up to a dock while we ate lunch and watched the sea birds, sea lions and seals catch and eat fish.

A lost gray whale in the harbor

On the way back to the dock we encountered a gray whale that was lost, they don't normally come into the harbor. We hope he found his way home.

It was sunny, blustery and cold, a stunningly beautiful day for exploring our Octopus's garden.

- Kathleen

Home Again

The San Diego city skyline with snow-covered mountains in the background

We arrived home from Memphis to some very un-San Diego-like weather. The day after we got back Doug had just made some arrangements to meet his dad for golf when the skies opened up and our balcony and all our lawn chairs were filled up with hail.

We've even had a few days where the temps haven't climbed out of the 40's, cold weather indeed for us weather wimps who live along the Southern California coast.

A friend called me after we were home and said how does it feel to graduate from 3-month followups to 6-month followups?

Steven holding Sarah, Sean's best friend's little sister

We both agreed that the feelings are mixed, we're ever so grateful to have reached this point, but we're always a little uneasy about the longer intervals of not knowing what's going on inside his head. When Steven was diagnosed, the doctors surmised that the tumor grew from nothing to the size of a large plum in about 6 months.

There's a little piece of me that would be perfectly happy to haul him in for an MRI every week, but that's just my anxiety speaking.

Despite the cold weather, spring must be here because Little League just started.

Sean at bat

Doug is an assistant coach this year and Sean's team won it's first game.

We are just so happy to be home again with good news.

- Kathleen

Everything Was Good!

Thank God. No matter how many times I do this, I still feel like I'm going to throw up every time we're waiting on the final word.

More later, we've got a plane to catch...

The Music of the Machine

Steven and Zach playing foosball at Grizzlies House

Last night we had dinner at the Spaghetti Warehouse with Steven's buddy Zach, who had radiation the same time as Steven for a brain tumor.

Steven was dragging this morning, after a little wheezing last night. Memphis is the allergy capitol of the world, something to do with the proximity of the Mississippi River, and we'd lost or forgotten his allergy medication somewhere along the way from California.

MRI preparations were the first order of the day. Elomax (numbing creme) and Tegaderm (sticky plastic film) so that his arms are feeling no pain by the time it's time to put the IV in.

Then a bone age X-ray, helps see if he's growing according to schedule or not and helps the endocrine docs determine if he needs growth hormone or other supplementation.

Miss Leslie removing the tegaderm

We saw Dr. Gajjar before the MRI this time because he's not in the clinic tomorrow. A physical exam, everyone thinks he's looking great.

Then Steven's personal IV team arrived, Miss Leslie the nurse and Miss Angie of Child Life.

Miss Angie asked him if he wanted her to stay this time. Steven said yes but I think he's getting to the point where he's a little embarassed to ask.

It's finally getting so that putting in an IV gets a little easier each time he does it. In November it was the first time he did it without Ativan, this time was the first time there were no tears.

The needle goes in-- shock, but no tears

Plenty of anxiety, but no actual tears. I'm so proud of him, and of all these kids who have to repeatedly endure feared medical procedures, they're true heroes.

We saw the speech therapist, who evaluated him and gave him the highest score she could give, even after his cleft palate and his other trials, he's continues to improve.

Then Dr. Khan, Steven's neurologist. Dr. Khan prescribes and follows Steven on Concerta, which we started this year to address attention problems post-radiation.

Dr. Khan was happy to hear that Steven is getting A's and B's this year, after the struggles of last year, and we decided to keep the medication as it is for now.

Then the main event, the scan. Steven fell into a deep sleep for the hour or so it took to get the detailed pictures of his brain.

A couple of scans had to be repeated because he was moving, so it took a little extra time.

I stayed in the MRI room with him. It may sound odd, even though I'm always anxious, it's a peaceful time in a way.

Steven settling in for the MRI

It's my time to just watch him sleep while I meditate, pray, and bargain with God. On some occasions it's been a time I can cry without him seeing me.

All to the accompaniment of loud thuds, bangs, ear-splitting shrieks and whistles. Each scan they do sounds different, some sound like a jackhammer, some sound like a screaming teakettle.

There's a special sound the machine makes as they inject contrast.

King Steven

It hit me today for the first time that I've done this so many times with him now that I would notice if they changed a scan, or the order in which they do them, just by the sound.

The machine has it's own kind of music.

We get results tomorrow. Thank you all for your kind thoughts and prayers.

- Kathleen

A Visit With Some Old Friends

The big male Komodo dragon at the Memphis zoo

We had some time this morning before our first (and only) appointment, so we rented a car and drove to the Memphis zoo.

Steven and the 21-foot reticulated python

The zoo was one of our main diversions when we were living at St. Jude, being only a mile away from Target House and free to St. Jude patients.

The reptiles would be fed on Saturdays at 1 pm and the Komodo dragons on Sundays at 3 pm and we went whenever circumstances would permit us to go.

When Steven finished treatment in May 2004, there was the promise of a new exhibit, The Northwest Passage was cordoned off as a construction zone with the promise of an eventual Arctic exhibit.

Had we traveled to Memphis mid-February as originally planned, we wouldn't have been able to see it, it opened just three days ago.

Steven said to me today, "I think it was a gift from Kyra", since the reason I moved our visit was because it was the tenth anniversary of Kyra's death, it just didn't seem like a good day for an MRI.

The polar bear exhibit was awesome, I don't remember seeing the polar bears in San Diego ever as active and playful as the polar bears were in Memphis today.

Memphis was having ice storms two weeks ago as well, today it was warmer than the weather we left behind in San Diego, sunny, warm and beautiful.

Endocrine evaluated Steven and confirmed what we already know, he's moving ever closer to puuberty, but on schedule. His growth is keeping pace with where he's been since he was an infant, 25th percentile, so no growth hormone for now. Such a blessing, growth hormone injections are common for kids who have had radiation to their whole brain.

- Kathleen

Dusting Off Our Blue Suede Shoes

Put on our blue suede shoes
And we boarded the plane
Touched down in the land of the Delta Blues
In the middle of the pouring rain.
- Marc Cohn, Walking in Memphis -

It's that time again.

Steven's been feeling fine since our last brush with the ghosts of the past. Well, except for a short bit Friday evening, but it was probably nothing, I am nothing if not neurotic about all of this.

So, we pray that this visit is a good one. Clear scans mean we will be on a six-month instead of a three-month schedule.

Because nothing is ever easy, it's almost 10 pm and Sean is at urgent care right now getting the oozing sores that just kind of popped up out of nowhere on his arm looked at.

I was at church tonight with the kids and Sean silently had tears streaming out of his eyes the whole time, these sores were so painful.

Weird thing is, he had the exact same thing happen almost exactly a year ago, and it was the day before Steven and I were leaving for Memphis. People were guessing poison oak (doesn't look at all like poison oak or poison ivy) or shingles, but could never figure it out. Now he's got them again.

Early tomorrow morning Steven and I are off to the land of the Delta Blues. Supposed to start raining about the time we get there.

Our schedule is here. We fly home Wednesday afternoon.

A sweet woman from my church gave me a bracelet to wear on our trip that was blessed at Medjugorje, such a compassionate and touching gesture.

If you would, remember us in your prayers and hold good thoughts for clear MRI scans and smooth travels. Or even if the travels aren't smooth, we'll settle for clear MRI's. And for Sean's sores to heal and not cause him pain.

Now if I can just get the butterflies out of my stomach...

- Kathleen