Frustrating Day

After a very long and frustrating series of phone calls, we finally got a referral to the Stanford Hospital bone marrow transplant service. Tomorrow, Wednesday, we should know when Adrienne's appointment is, hopefully next week. Our goal is to proceed with further treatment (either donor lymphocyte infusions or cytokine-induced killer cells) as soon as possible so any side effects can be treated before Adrienne goes away to college at the end of August. We want to ensure that nothing stands in the way of Adrienne going away.

This weekend, we are off to Humbolt for the Avenue of the Giants 1/2 marathon. Adrienne won't be doing the race but will greet all of the runners and walkers when they finish their event at the Team In Training table. She loves doing that kind of thing. We'll return home Monday afternoon.

Daniel has his junior prom this weekend. He decided just a few days ago to go "stag" so we've been running around getting his suit dry cleaned, a new shirt and tie, and so on. Since Adrienne and I won't be here Saturday night, he's going to dress up for us on Friday night so we can take pictures. He looks very handsome in his suit, as he does in whatever he wears.

Curt's nose looks amazingly good after having the skin cancer removed and skin grafts in its place. He needs to be extra careful in the sun from now on.

New "Do"

Adrienne got a cute new haircut on Friday. This is the first time she's really had a cut since her hair started coming back in almost two years ago. Before that, she just got her bangs trimmed. It looks really good.

This has been a fairly uneventful week since Monday's chemo. Adrienne felt "yucky" until Thursday but now says she feels back to normal. She even went for a one hour walk this morning with minimal pain in her hip. She won't do the half marathon in Humbolt next weekend but she will come along to cheer the team on and help the coaches with whatever they need.

I've asked Dr. Negrin, the head of BMT at Stanford, to take Adrienne as a patient. No word back yet on whether that will work, as I've heard he isn't taking new patients but Adrienne is hardly new to transplant. Apparently the transplant doc at the children's hospital finally talked with him (after promising to do so a month ago) but never got back to me with a plan. We would like a doctor that is responsive and offers Adrienne some more alternatives.

Daniel had a "fun" day at traffic school today for making an illegal U-turn. He thinks he was the only one in the class that didn't have a speeding ticket. Two other kids from his high school were there.

Tonight is Passover at our house. It should be fun.

Chemo, Pain, and Some New Info

Adrienne got her chemo yesterday, which went fine. We finished quite late because the nurses became engaged trying to get an NG tube into a boy who struggled and was stronger than they were. We had to wait for labs and then for chemo. Adrienne's blood counts remain good so we've been able to stay on schedule. We rescheduled the next chemo for May 9 since Adrienne has AP exams the week of May 2 and wants to feel good for those.

The pain in Adrienne's hip isn't neuropathy and is probably something more structural. She's going to try a therapeutic dose of Naprosen for two weeks to see if that helps the problem. It probably won't help the pain in her feet but we'll deal with one thing at a time.

After Adrienne's chemo, we went to a Team In Training event where the speaker was the head of bone marrow transplant at Stanford, Dr. Robert Negrin. He is also a participant on the cycle team. Go Team! We got there late and missed his presentation, but were able to pull him aside and talk afterwards. We got some very interesting and useful information. He thinks Adrienne should have DLIs, explaining that the potential benefits outweigh the risks. Since she has full donor chimerism and it has been two years since her transplant, the risks of GVHD are very low and likely to be chronic in nature and easily treated. There is also a clinical trial of "cytokine-induced killer cells" at Stanford that Adrienne would likely qualify for. I've asked Adrienne's transplant doctor to talk with this doctor. She hasn't been very helpful in this regard and if we don't hear back by Friday, we'll make an appointment to see Dr. Negrin at Stanford.

Hip Pain

I asked Adrienne to really think about the type and intensity of the pain in her hip. After walking on Wednesday night, she says the pain feels like that in her feet, which we've assumed is peripheral neuropathy. Adrienne's problems with peripheral neuropathy began after her second transplant while in Seattle. The pain and weakness were so severe then that she was unable to walk. Physical therapy and medications helped resolve the problem, but the pain in her feet has continued when she does any sustained walking (like for marathons and half marathons).

One of Adrienne's chemos, Vinorelbine, causes peripheral neuropathy. That drug, combined with the damage from previous chemos, seems to be causing the current problem. Adrienne took Neurontin for this problem a couple of years ago and it was very effective, so she's going to try it again. We'll get the prescription on Monday when she goes in for her chemo.

Adrienne and Daniel had a very good visit to Santa Barbara to see their dad this week. They said the weather was perfect. Next time, I think Daniel will take his friend Brian because they really like to pal around together.

We sent the initial enrollment paperwork into Claremont McKenna this week. Now Adrienne needs to complete the forms to turn down the other schools. She is looking forward to her senior prom and graduation in the next couple of months.