Steven's February Scans

I requested Steven's scans on CD and put together a video of the different scans.

The video shows all the different slices they take, with and without contrast. The colored images at the end are looking at white matter changes.

Steven's February MRI.

- Kathleen

Eye Clinic and Celebration Dinner

Steven has really droopy eyes, with a pronounced droop on the left side. The droopiness has been getting increasingly worse over time.

During his opthalmologist visit, they noted a decrease in his peripheral vision on the visual field exam. The doctor who saw him on Tuesday recommended we see the oculoplastic surgeon who would be in the eye clinic on Thursday.

So we rescheduled our return flight from Wednesday to Thursday so we could see the eye surgeon. The tentative plan was for him to examine Steven, then do the surgery when we return for our August visit.

The surgeon determined that fixing Steven's droopy eyelid would be more involved than a single outpatient procedure, so we will pursue treatment in San Diego and hope that we can get our insurance to cover it.

We celebrated the clear MRI by taking the trolley downtown and eating some very excellent barbeque at Rendezvous.

After dinner we went up to the top of the Peabody Hotel and enjoyed the nighttime view.

We then sought out our duck friends in their Duck Palace on the hotel roof.

We are ever so grateful to be home again with good scans.

And many thanks to all of you who think of and pray for us-- we appreciate it more than we can show.

- Kathleen

Waiting for the All-Clear

Tuesdays are clinic days in the E (neuro-oncology) clinic. I am always sadly amazed at the sheer number of new faces, the never-ending stream of new families seeking desperate treatments to keep their children with them.

Waiting is part of the game in E Clinic. We wait to be called, to see the doctor, to have our fortunes told. Steven plays Age of Empires and I chat with other families and we all pretend that we're not nervous.

Dr. Gajjar walks through the clinic waiting room and waves, but doesn't give a thumbs-up as he does sometimes. Steven wonders if the absence of the thumbs-up portends bad news.

On previous visits while we wait, sometimes a child life social worker walks through the waiting room attended by the chaplain, they head through the clinic doors and enter a patient room. We pray for those families.

On Tuesday we are called to a room about an hour after our appointment time, where we wait some more. The E Clinic rooms have I Spy posters on the wall, a distraction while we wait.

Dr. Gajjar's nurse Lizzie comes in and says she still hasn't seen the MRI results but thinks all is well. She gives Steven a neurological exam.

Finally, Dr. Gajjar enters with good news, the MRI is clear. We are grateful for another six-month reprieve.

- Kathleen

President's Day in Memphis

Our flight to Memphis was thankfully uneventful and on-time. We even got there in time to eat in the cafeteria, where I harassed Steven by taking pictures of him while he was eating.

The scheduling gods at St. Jude smiled down upon us this time and granted that Steven wouldn't have to have a fasting blood draw at 7 am (5 am California time), mercifully the first appointment was 9 am.

Steven and I spent 3 hours down in the Behavioral Medicine clinic participating in a study entitled, "SADHD1: Pilot Study of Primary and Secondary Attention-Deficit/Hyperactivity Disorder Among Survivors of Childhood Cancer". I fill out multiple detailed forms, and Steven more neurocognitive testing, as well as detailed interviews.

Our hope is that one day these studies reveal something useful that can be used to help the kids who've had to go through such rigorous and toxic treatments at such a young age.

Despite making progress, Steven still has a full-blown phobia about IV's. He began worrying about the IV he was going to have to get before it was even February.

But the IV is a necessity, that's how they inject the MRI contrast solution. So I start by teasing him and taking pictures, trying unsuccessfully to get him to laugh.

This time none of our familiar nurses can be found. It's been over 2 years since anyone failed in their first IV attempt, but on Monday the first attempt resulted in a blown vein.

Steven is shaking and drenched in ice cold sweat from head to toe, trying hard not to cry.

The second attempt was successful, but barely. Steven de-stressed with a little Sonic the Hedgehog.

The MRI in the new Chili's Care Center allows Steven to watch a movie. They mount a mirror to the MRI head frame and Steven wears headphones.

This works great for Steven, whose biggest problem in the MRI has been falling asleep and then twitching. The movie helps keep him awake.

I accompanied Steven into the MRI and about 20 minutes or so into his 1-hour-plus scan, I heard a sound, through the ear protectors and over the screeching and jackhammering of the equipment.

Standing at Steven's feet and peering into the tube, I could see that the mirror had fallen off the head frame and one corner of it was poking directly into his eye.

So I stand at the glass waving my arms and pointing at Steven and finally get the attention of the MRI techs, who mount a new mirror and the scan continues uneventfully.

They want to pull the IV since they think it won't work well enough for Steven's Tuesday blood draw but Steven is adamant that he wants to give it a try.

So, we leave the IV. It's late, the cafeteria is closed, too late for the Grizzlies House dinner and we don't have a car this time, so Domino's delivery it is.

And prayers for clean scans...

- Kathleen

The End-of-Summer Blues

Pulmonary testing

We're back from Memphis. Everything healthwise looked good. We're still waiting to hear from endocrine, his labs weren't back by the time we left.

Steven's oncologist took me aside alone on Tuesday, the day after his MRI, to tell me his MRI was clear. This good news was immediately followed by a really blunt discussion about Steven's future academic and vocational prospects, a discussion that left me in tears and that I just can't reconcile with what I see in him.

We arrived home late Thursday night to see that his STAR test results had arrived. He got a 484 in English and a 513 in Math (out of 600), placing him well into the advanced levels. Shouldn't college be at least a possibility for him if that's what he wants?

I'm trying to strike some sort of balance between what I see in Steven and what his doctor, who has seen first-hand the after-effects of radiation on hundreds of children, sees.

Parenting a child in this situation isn't easy. I want to push him to perform to the best of his abilities, and no more than that. But it seems the doctor and I have different views of what his abilities are.

School starts on Monday for Steven and Sean.

So much of what I had hoped to accomplish this summer hasn't come to pass, but I think I can still say we've had a great time (photos later).

- Kathleen

All Clear

Practicing for the functional MRI

Steven completed his cognitive testing today, another three-plus hour marathon.

Then the oncology visit and results, everything was clear, for which we are so, so thankful.

Next was the functional MRI. First, Steven practices some exercises on a computer.

The scan begins

Afterward they put him into the MRI where he does those same exercises while he's being scanned. The MRI measures post-radiation white matter changes in the brain and they are trying to correlate white matter changes with cognitive deterioration.

Our friend Kevin is out of the hospital and getting ready for his final round of chemo on the same protocol as Steven. God willing, he will be going home to Michigan soon.

Steven's pterygium (cloudy area starting near his nose and covering part of his pupil) - click to enlarge

The oncologist today noticed that Steven had a pterygium in his right eye. We looked at her blankly, but I was a little shocked after seeing it that I could ever have missed it.

They are very uncommon in children, but Steven is always full of surprises.

Tomorrow we see the opthalmologist and test his hearing.

I'll write more tomorrow, for reasons I don't completely understand myself, I've been weepy since we got here and even the good MRI results haven't banished my bad mood.

So for tonight we'll try for a good sleep.

Many thanks to all of you who have prayed for us, held a good thought for us and supported us in so many different ways.

- Kathleen

A Milestone In Our Journey

We're baaack...

Sometimes I feel selfish calling it "our" journey, because more than anything, it is his journey.

Steven and Kevin Saarela, 8 yr old brain tumor and in the same treatment that Steven did.

Memphis dry ribs at Corky's

When all is considered, he's the star of the show and I'm one of the groupies.

The new Chili's Care Center

Steven fighting his anxiety over the coming IV

September 9, 2008 will mark 5 years from the day Doug and I sat staring disbelievingly at the image of the glowing ball in Steven's head. There's nothing magic about that date, with Steven's sort of cancer they say to take the age of the patient at diagnosis, (9 years for Steven), add 9 months for gestation, and that if that much time passes with no recurrence, chances are it won't come back.

A new MRI nurse and no Elomax (numbing creme)

The IV is in and no tears!

But every year, every month, every day, every hour, every minute is a milestone.

Prepping for the scan

The new MRI has a prism so he can watch movies

Steven got his MRI today. Tomorrow we hear the results.

Steven chose to watch "A River Runs Through It"

The head frame is attached and in he goes

If everything is clear (please God), he will officially be considered by St. Jude to be a longterm survivor, he will be moved from E Clinic (neuro-oncology) to the ACT clinic (After Completion of Therapy), and we will go from 6-month to annual visits.

Measuring arm span

Measuring his height

This is one (of many) things we've been praying for and something that I, his mother of little faith, have never taken for granted.

Steven posed an Elvis Gumby on his chest

Closeup of the Elvis Gumby

We're here in Memphis until Thursday.

- Kathleen

Tornado

Steven started out thinking this storm thing was kind of cool. He voiced to me that he wanted to see a tornado firsthand once in his life.

I told him there is really no safe distance at which to watch a tornado.

After eating dinner and returning to our rooms for an hour and a half or so, the tornado alarms started up again and they announced a "tornado emergency" on the news. Time to return to the stairwell.

Some people showed up in their pajamas, Steven tried to take a nap, we made ourselves comfortable until the door from the stairwell to the outside started leaking and we had a rapidly developing flood.

Steven and I abandoned the stairwell and huddled in the preteen room. On the news we heard that eight people in Memphis were killed.

So now we think it's done. We're waiting for the promised 40-degree temperature drop and the accompanying golfball-sized hail.

Steven doesn't think it's cool any more. We got back to our room and he took off his Science Olympiad shirt, saying it was bad luck. His team was the Tornados, and there's a tornado on the back of the shirt.

Next thing he goes into the bathroom and doesn't return and I find him sleeping in the bathtub. I promised to keep vigil until the temperature drops and was eventually able to convince him to get in bed.

If it gets bad again tonight, I'm going to pack our rental car and drive it to the underground parking garage at the hospital and we'll sleep there.

I was kind of hoping that the wildfires in October were going to be the end of our adventures in natural disaster this year.

- Kathleen

Mardi Gras

Memphis storm radar 02-05

We got to E Clinic to speak with Dr. Gajjar this morning and he was fashionably late, we waited for an hour.

But this is the same man who responds to my panicked wee-hours-of-the-morning emails, sometimes within half an hour, so there isn't much I won't forgive.

Monday dinner at Corky's

We got to meet Dr. Gajjar's new nurse, Lizzie. His previous nurse, Valerie, moved to Texas to get married. There was an entirely new staff in the clinic this time.

MRI results show no change. In the case of a malignant tumor, any change at all is bad change, so this is the best possible news and in the absence of new symptoms, we're good for another six months.

Steven and Dr. Gajjar's new nurse, Lizzie

I don't know why I was so on edge this time, but for me this was a particularly stressful visit. The IV fiasco yesterday made it bad for Steven too.

After we got the results, a nurse helped me and Steven remove his IV, again he ended up trembling from head to toe and drenched in sweat, but we got it out and his relief was palpable.

Lizzie finally got Steven stopped talking enough to examine him

Now IV'less, we headed over to our first visit in the new Chili's Care Center to do the bone age X-ray we couldn't do yesterday with the IV in.

We saw the neurologist and finally headed back to Grizzlies House.

Steven and the great man himself, Dr. Gajjar

When we're in Memphis, it's like living in a world unto itself or something, we don't hear the news or read newspapers or pay attention to much of anything except the anticipation of MRI results.

There was a severe weather warning today that we were unaware of. Since we arrived, day and night temperatures have been in the 70's, cloudy, humid, and no wind. We lived in Memphis long enough to realize the warning signs of bad weather, but we were too stressed to notice.

The aquarium in the new Chili's Care Center

So today upon leaving the hospital a flash of lightning and a crack of thunder sounded that just about laid us on the ground. We started to run toward Grizzlies House, the sudden rain pelting us as we ran.

We got inside and I watched out the window as the winds picked up, blowing the rain and water in the parking lot into waves. Steven went downstairs to celebrate his clean MRI results with a few rounds of computer games and I turned on the TV.

Sonic The Hedgehog in the new Chili's Care Center waiting room

After about an hour someone pounded on my door and told me to get downstairs immediately. I went down and they gathered all the Grizzlies House residents in the stairwells on the first floor.

We huddled down there for about an hour as half a dozen or more tornadoes touched down in Memphis, the tornado watch sirens at the fire station blaring.

Crafts in the B Clinic waiting room

There was a Mardi Gras dinner planned for the St. Jude families at Grizzlies House, but it was postponed while we waited for the tornadoes to pass.

Finally we were permitted to eat dinner, but weren't allowed to return to our rooms for another hour.

The airport was closed and a 737 on the ground was blown two feet or so across the ground. The Fed Ex hangar at the airport was trashed, and a local shopping mall was severely damaged.

Grizzlies House residents taking shelter from the tornado

We were originally scheduled to fly out of Memphis today and they decided to move us to Wednesday. Someone must be watching out for us after all.

We have one visit tomorrow, then we head home.

And we are so ready to go home.

Mardi Gras dinner at Grizzlies House

I am unspeakably grateful that Steven continues to do so well. I don't understand it, but I'm grateful. Countless times I've cried and prayed and not believed he would make it this far.

Yet here he is and it has nothing to do with me. I love both my boys so much.

- Kathleen