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

Wednesday, December 31, 2003

The Next Phase: Preparing For Chemo

We arrived in Memphis Sunday night around 10 pm. We didn't actually hit the road on the 26th until 5:45 pm, so taking into account the time change between California and Memphis, we made the trip in about 50 hours. This despite a short but intense snow storm we encountered before we left San Diego County, the nonstop downpour we encountered for the last 300 miles of the trip, and Doug's encounters with the Texas state troopers.

We discovered that Texas, like Provo, Utah, looks at people driving through their communities as an untapped revenue source. The roads were lined with officers ticketing people for speeding violations, and we got two in a 24-hour period.

Currently we are staying at the Marriott in downtown Memphis, where we will be until St. Jude arranges for us to move to Target House. We will let you know our address when we move.

Steven is preparing to receive chemotherapy in sufficiently high doses that it will kill his bone marrow. It is not the goal of chemotherapy to kill his bone marrow, but it is a side effect of chemotherapy at the doses he will be receiving. To help him recover from the chemo, he will receive his own stem cells back, which will help his bone marrow to recover.

Steven will need a central line, a catheter which will be threaded into the veins right next to his heart and which will protrude from the center of his chest. The central line will be used to deliver all IV drugs and can be used to draw blood as well.

Due to time constraints, first stem cell harvest will be done surgically, basically they will stick long needles into his hip bones and suck out enough bone marrow (something like 20 ounces) for his cycle of chemo. Subsequent stem cell harvests will be done between cycles using apheresis, where he is hooked up to two IV's (the central line will be used for one of them) and blood is drawn out of one IV, the stem cells are separated out, and the rest of the blood is returned to his body in the other IV. It takes 6-8 hours to harvest stem cells using pheresis, during which time he will have to remain still and squeeze a ball.

Typically St. Jude's spends 2 weeks preparing a patient for high-dose chemo, but Steven is going through all his preparations in one week, a week where many of the staff are on vacation, which is resulting in very long days at the hospital.

Here's where we are now:

12-29 Monday: We head off to imaging so Steven can get an MRI of his spine (to rule out any tumor growth in the spinal cord). Contrast is necessary, so a nice woman comes in to insert an IV. Steven will have none of it, so we are sent to see his neuro-oncologist to reschedule.

The neuro-oncologist says they will insert the IV and send him back to the MRI. We bring in Child Life, the wonderful staff whose sole job it is to ease the anxiety of children going through different procedures, and they work with him for a while. Two nurses arrive, and I hold him in my lap and attempt to calm him.

It took a third nurse, the neuro-oncologist's nurse practioner, and myself to hold him still while they put in the IV. Steven was reduced once more to a screaming, sobbing, panicked little boy with all hint of rational thought gone. The good news is that we will leave the IV in for the rest of the week so hopefully, no more pokes.

I feel bad because I didn't realize in advance he'd need an IV for the spinal MRI, in San Diego they did it without the need for an IV. Next time I'll arrange in advance for what will hopefully be a better experience for him, using hypnosis or sedation.

12-30 Tuesday: We see the neuro-oncologist, who tells us the spinal MRI is clear.

We meet the surgeon who will be installing Steven's central line. Steven has some abnormalities in the vessels of his heart, so extra care is needed, and they do an echocardiogram.

We meet one of the bone marrow transplant nurses, who explains what we will need to do to prepare him for the bone marrow harvest.

Steven gets an MRI of his brain, the first since radiation, also with contrast. We use his existing IV for the contrast, so all is well this time.

12-31 Wednesday (today): Pulmonary function studies (Steven suffers from recurrent pneumonia) Functional MRI (not diagnostic but for research purposes, they give him tasks and look at his brain function) Spinal Tap (to detect microscopic cancer cells in his spinal fluid)

His doctor tells us the brain MRI looks good.

1-1 Thursday: Short pre-surgical visit with the bone marrow transplant team.

1-2 Friday: Surgical procedure to install his central line Surgical procedure to harvest his bone marrow

1-4 Sunday: 7:30 pm Steven is admitted to ICU, into an isolation room

1-5 Monday: 9:00 am chemo begins, Sean's first day of school in Memphis

We'll update again soon. At the moment our only internet access is extremely limited and only when we're at the hospital. Once we move to Target House, we hope to be able to get broadband access in our room so that we can work.

- Kathleen

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