Steven and Sean on the Polar Bear Cam
Steven and Sean on the Polar Bear Cam

Monday, January 31, 2005

Nothing Is Ever Easy

7:22 AM (5:15 AM California time) I wake up. Thing is, I set the alarm for 6:30 AM, but something went wrong.

Steven's first appointment (bone density CT scan) is at 7:45 AM. I panic and drag Steven out of bed.

Steven is moving slowly, I can't light a fire under him for the life of me. We run out the front door of Grizzlies House at 7:55 AM, 10 minutes after the start of his appointment. We run to the hospital, spurred on by the fact that the temps are in the 30's and we aren't wearing jackets. When we run, we are faster than any of the shuttle buses and we have no time to waste.

We arrive at the hospital and stand in line for a wristband. At St. Jude, the wristband is everything. It has the patient name, medical record number, and the number they use to bill our insurance. They have a computer network across the hospital, and after the patient is checked in and a wristband issued, you are in their computer system and they know you are there.

We run to the radiology waiting room. Jake and Stephanie are sitting there, their appointment is after ours. We wait.

Steven is called in at 8:15. The CT scan is no big deal, he lies on a table with his arms over his head and the scan takes about 7 minutes. Despite our tardiness, Steven is just getting dressed when we hear him paged for Assessment / Triage, which is where they measure him and take vital signs.

They measure his weight and height. He has grown some since his last visit and gained weight. The increase in height is a good thing, the weight gain isn't so good, he's carrying around a few extra pounds like his mom.

We go to the cafeteria and grab some breakfast to go. I run into the mother of a little girl we met the first day we arrived in Memphis in September 2003. Her little girl was three then, her name was Morgan, but I can't remember the name of the mother (all the St. Jude mom's are used to being known as their kid's mom).

The last time I saw this mother, who clearly can't remember my name either, was in March of 2004, when she was at St. Jude for a bone marrow aspiration for her daughter Morgan. Morgan was diagnosed with leukemia as an infant, at that time the family lived in San Diego. They, like us, came to St. Jude for treatment, but unlike us, St. Jude was not able to put Morgan's cancer into remission.

Two bone marrow transplants later, Morgan still isn't in remission and the family has moved to Memphis. In March of last year, they had stopped all of Morgan's treatments and when I saw them, they were there just to monitor what was going on, Morgan was clearly dying.

I gave her a hug and asked how she and her family were doing. She has two other children, now age 3 and 5. She said we're plugging along, but the nights are horrible. Today was her first time back to the hospital since Morgan's death, she was visiting Morgan's plaque and having lunch with Morgan's doctor.

It's time for us to go. We run over to the endocrine clinic, which is in another building and requires that we brave the 30-degree weather again. They order more blood tests and measure Steven's private parts with a ruler. I try not to pay attention.

Steven modeling the hospital pants prior to his DEXA scan

Back across the parking lot to the hospital for Steven's DEXA scan, another bone density test usually reserved for post-menopausal women, but apparently also for little boys who have had their spines irradiated.

Then a short break and they call him early for his eye exam. The eye doctor has had to leave town suddenly due to an illness in the family, but they test Steven with the eye charts and color blindness images, then they do a visual field test, everything but the dilated eye exam, which hopefully they can do on Wednesday when the doctor returns.

Next an evaluation of his speech. His speech has improved quite a bit since he was last evaluated, this is good news.

As soon as the speech therapist is done with him, I give him a hefty dose of ativan, in preparation for his #1 feared medical procedure, inserting the IV. We wait half an hour, then go to the brain tumor clinic so they can put EMLA (numbing cream) on both arms, the potential spots for inserting the IV. Then another half hour wait.

Steven trying not to stress before they put the IV in.

Steven is drugged up now, acting goofy and very relaxed. We put him in a room, turn down the lights, and play one of his DVD's on my computer. His two favorite nurses Tara and Leslie come in, along with Angie from Child Life.

Steven right after the IV went in.

Angie makes bird noises and fake ocean sounds and Steven tries to concentrate on his DVD while Leslie and Tara choose a good spot to stick him with the needle. Lesie is awesome as usual and gets it in the first time. Steven cries, a little from the pain of the stick but mostly with relief over getting this part over with.

I'm looking at our crazy schedule, the freezing cold rainy weather, and wishing I had a car. I call our friend Cedric at Avis in Memphis, who comes to pick me up at the hospital so we can rent a car. Cedric knows our preference for a non-smoking car and he's got a car ready for us-- all new-car smell and not a hint of smoke. We love Cedric.

We drive back to the hospital with about 90 minutes to kill before Steven's MRI. Steven is suddenly not feeling well.

I hope it will pass but it doesn't. Half an hour before his MRI, Steven is asking for a basin.

We head to the medicine room (the only place open after 5:00 PM). I ask for some ondansetron (zofran), a powerful antinausea medication, Steven took it every day during radiation and chemo. Probably every St. Jude patient has taken ondansetron at some point.

They say OK, we'll have to order it. The MRI pages Steven. I walk over there and tell them what's up. They want to go home, but more than that they don't want to put a child into the MRI tube who might throw up.

The ondansetron eventually shows up, but it takes over an hour. I walk to the far side of the hospital to pick up the IV bag personally. I carry it back to the MRI, now we have to wait while it infuses.

Steven on his way into the MRI tube.

Steven's 6:15 PM MRI starts at 7:40 PM. He's still not feeling great, but better. The MRI takes an hour and he does fine, sleeping through most of the scan while I fret.

Now it's 8:45 and we're looking for something to wrap up his hand with the IV. The MRI room doesn't have anything, so back to the medicine room. We wait while they order Koban to wrap his arm with. It takes 20 minutes, and he's still feeling sick.

We get back to our room at 9:30 or so. Steven falls asleep. Praying for (1) good MRI results, (2) that the MRI that broke down today is back up tomorrow (it's the only one equipped so they can do his brain), and (3) that he feels better.

- Kathleen

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