Thursday, April 28, 2005

A Different Referral

Early yesterday morning, I received an e-mail from Dr. Negrin, the head of bone marrow transplant at Stanford, saying that he would be seeing Adrienne. The previous day, I had been told that another doctor would see her. We now have an appointment Monday afternoon after we return from the Avenue of the Giants 1/2 marathon.

While we're not sure why there was a sudden change of plans, we can only assume that Adrienne's case is complex enough that they want the most experienced transplanter to work with her. Adrienne said she doesn't think she's had all that much treatment and doesn't understand what all the fuss is about. I wonder what she would consider to be a lot of treatment since she's maxed out the doses for virtually everything out there.

We found out that another girl that Adrienne has known since elementary school, Ashley, will be going to CMC, and she lives just about three blocks from here. They will be the only two from her high school to go to CMC and both are very excited. We received confirmation that Adrienne is enrolled and will begin orientation in late August. Adrienne is even considering a wilderness outdoor adventure (WOA) that the college sponsors for incoming freshmen. Of course, not being an outdoorsy person, she's considering the least dirty option, which is at Yosemite.

Daniel is very excited about his prom on Saturday. Last night, he put on his new shirt and tie (with his jeans) and put on a suit jacket of Curt's that's the same color as his suit, which is currently at the cleaners. The new shirt and tie look very smart. On Tuesday, we filled out all the papers and wrote a bunch of checks so Daniel can go to football camp this summer at UC Berkeley and play in the fall.

Tuesday, April 26, 2005

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.

Saturday, April 23, 2005

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.

Tuesday, April 19, 2005

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.

Sunday, April 17, 2005

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.

Wednesday, April 13, 2005

Another Quiet Week

Actually, a really, really quiet week. Adrienne and Daniel are at their dad's house in Santa Barbara but they will be home around dinner time on Thursday. They are having a good time but there isn't a whole lot to do down there. Adrienne says she has a lot of homework, mostly reading, that she hasn't gotten to but hopes to work the next few days.

Adrienne has been training with the Santa Barbara TNT team. Her dad walked with her for 2.25 hours on Saturday and she's off to their track training tonight. She says she'll miss the pilates since they don't do them there. We're very lucky to have such a great group of coaches up here that focus on core strengthening. Adrienne's hips continue to hurt even though her xray last week didn't show any problem. She might need an MRI afterall, but we'd prefer to wait for awhile.

Curt had his skin cancer removed from his nose and looks like he was in a bad car accident. His mom is having her other hip replaced in a couple of weeks. I will sure be glad when everyone is healthy again.

Thursday, April 07, 2005

No Hives!

I hope I'm not celebrating too soon, but Adrienne hasn't gotten any hives from her chemo on Monday. She took half the premeds before the infusion and no meds since, and all is well. Except for being tired, she's doing great. She has no hospital appointments next week so she and Daniel will visit their dad while they are off school for spring break. The next chemo is scheduled for April 18.

Curt went to the dermatologist today over some odd looking "things" on his nose. Turns out he has skin cancer in two locations and a number of precancerous growths, which will all be removed next week. He also has inguinal hernias but we'll wait to see if the hernias repair themselves since he has no pain. That's what happens when you marry an old guy.

Monday, April 04, 2005

Good Report from the Doc

Thankfully, Adrienne's scans from last week look really good. The PET was negative. The CT shows some very tiny lymph nodes (less than 5 mm) with no uptake. Uptake indicates active disease, and she shows none. The plan right now is to continue chemo for another two months and then watch and wait. If Adrienne relapses more than a year out, we can even try this chemo again. There are several promising treatments on the horizon but we will wait until they are more proven and the side effects are known, particularly in young people.

Claremont McKenna College it is!!! After all the hard work and nervous waiting, Adrienne has decided that CMC is her choice. With the McKenna Achievement Scholarship and her National Merit Scholarship, they've made the offer hard to refuse. Adrienne loved it during her visit there and felt that she would be happy there. We're all so excited for her.

Daniel has been sick with a cold but is feeling better this afternoon. Curt seems to be over his jetlag, enjoying the baking I did while he was away. Adrienne and Daniel are off to visit their dad in Santa Barbara on Friday, leaving a quiet house. Hmmm.

Sunday, April 03, 2005

Claremont McKenna

Sometimes, all the signs point in one direction and it seems to be Claremont McKenna. Adrienne received her acceptance on Friday along with notification that she has been awarded the McKenna Achievement Scholarship. Even with that scholarship and the National Merit scholarship, a private school education is very expensive so we are scrambling to find the funds. Adrienne has worked so hard and has been through so much to achieve this and we all want her to have the best. We are keeping our fingers crossed that her scans last week show that she is in remission so she can go away to school. We'll know tomorrow.

I thought you might like to read Adrienne's main college essay written to the prompt: "Evaluate a significant experience, achievement, risk you have taken, or ethical dilemma you have faced and its impact on you."

“We wanted you to get some exercise. We didn’t mean you should train for a marathon!” So said my nurse practitioner when I told her I had signed up with Team In Training to walk the Honolulu marathon. I’ve always been motivated to do the best I can at everything I take on, and Team In Training gave me the perfect opportunity to stay active while supporting a cause about which I’m passionate. I’ve had two bone marrow transplants for Hodgkin’s Disease during high school. My experience has made me think about my life in a way I never thought about before, and I’m trying to improve other patients’ lives.

My involvement with The Leukemia & Lymphoma Society, especially the research I help fund, has a direct impact on people’s lives. The fundraising is critical because people are still dying from blood-related cancers. My own grandfather suffered a painful death at the age of sixty-six to Non-Hodgkin’s Lymphoma, and some of my young friends died because the treatments currently in use didn’t stop their diseases from growing. The treatments that exist today often cure the cancer but kill people later. I must endure long-term effects from my own cancer treatment, and I know that the funds I raise and resulting research will help others avoid what I’ve been through.

I know what it’s like to need help and not get it. After lunch at school recently, a mentally disabled girl was stranded on some stairs in the stampede of students rushing to their classes. Instead of ignoring her like the others did, I stopped and helped her up. A friend who was with me said she admired me and confessed that she would not have stopped if I hadn’t. I’ve been in that situation, and I appreciated it when someone helped me.

I understand how it feels to have people stare because you look different, or to shy away because they think they might catch something. My mom often tells the story, “Days after Adrienne’s first transplant, we were looking at the new babies through a window to the nursery. Adrienne was wearing her mask to protect her from infection. A young mother looked at her in horror and rushed away, covering her baby because she thought he might catch something when the actual purpose of the mask was to protect Adrienne.” Because of instances like this one, I always stop to think about other people’s feelings. I now understand and have compassion for people and the challenges they face.

Cancer doesn’t define me as a person but it has certainly affected my view of the world, the role I’ve chosen to help others, and the way I interact with others. I’m grateful that I’m healthy and don’t need help anymore. Now I can help others in a way I could not have foreseen.