Reflecting on 11 Years

At Thanksgiving, 1996, Adrienne showed me the lumps at the base of her neck. Since then, we've had 11 years, 132 months, 572 weeks, 4004 days of worrying and fear. Adrienne has been through more than a dozen chemotherapies, 21 weeks of radiation, two transplants, and too many procedures, surgeries, scans, and doctor's visits to count. If I hadn't seen it myself, I wouldn't believe it would be possible.

People often ask how I do it, how I cope with having a sick child. My answer is always that you do what you have to do. My emotions have ranged over the years from sheer terror to simply being thankful that Adrienne is still here, that she's had the best doctors and medical care possible, and that we've had the privilege to meet the most amazing people. I am continually in awe of the parents who are there for their children no matter what the situation, who get by with no rest and always full of worry, and who sometimes have to hold their children while they take their last breath.

We have a lot of uncertainty in our future. Adrienne's cancer hasn't been this big since her original diagnosis and it's obviously concerning that three treatments haven't worked. Conventional chemo with its side effects are definitely not what we wanted to do but we are desperate to get this back under control so Adrienne can live her life without fear as a normal college student. At least for the next few weeks, Adrienne can be that college student. Today I bought her plane ticket to come home on December 19. We are excited to spend this holiday season with our friends and family, and are thankful for the blessings in our life.

Much Better

We are in NY visiting with Adrienne for the Thanksgiving week. Today, Curt, Adrienne, and I went to visit the doctor and it was all good news. Adrienne's platelets are up and she's looking just great. We didn't get the liver numbers yet but are hopeful that things continue to improve there. Adrienne will go back in two weeks for labs just to make sure things are still okay.

The nurses printed some charts that show her labs the last six months. Adrienne's ESR, a general sign of inflammation from lymphoma, has been working its way up and her hemoglobin has been trending down, both signs of her disease. She is still wheezing as well. The plan now is for her to start chemo with gemcitabine and oxilaplatin at the first of the year at City of Hope.

It looks like Broadway isn't going to be back this week but we're finding plenty of other things to do. Adrienne has school and work until Wednesday afternoon so Curt and I have been exploring. Sunday, we went to the Guggenheim and walked all around Central Park. Tomorrow is our visit to the Met. On Friday, all three of us will be at the MOMA, Adrienne's favorite museum in New York City. In between we're having lots of great food and are enjoying people watching.

Improving

Adrienne had labs drawn today and things are looking much better. The liver enzymes are half of what they were last week. Hopefully they'll be back to normal in another week or two. The only lingering concern is that her platelets are down again to 72 (normal is 150-450). They are falling slower than before but we really need to see an upturn soon. Adrienne now gets a week off until she sees the doctor and gets more labs next Monday while Curt and I are in New York. Hopefully we'll see more normalcy by then.

In the meantime, Adrienne is busy with school. She's mostly caught up with the exception of her accounting/finance class. The prof and TAs have cancelled office hours several times so she is having trouble getting the help she needs. Hopefully this will be resolved soon.

We are looking forward to Thanksgiving in New York. The last time we were there this time of year was in 2002 for Adrienne's wish with the Make A Wish Foundation. It was a wonderful trip in many ways but Adrienne had a lot of pain from the chemo she was getting at the time and we had to make a visit to the emergency room. This time, we're planning on an event free trip and a resumption of Broadway shows this week since we have tickets for Avenue Q.

A New Wrench

Adrienne had a late appointment on Monday so her labs weren't done when she saw the doctor. I spaced it yesterday so I called today, fully expecting that everything was back to normal. Well, it isn't. The liver enzymes are higher and the platelets are lower. I spoke to the doctor late this afternoon and he's stumped. The plan now is for Adrienne to stop all of the antibiotics she's taking and have labs drawn again on Monday. In the meantime, her doctor wants to call Seattle to see if this could possibly be related to her allo transplant nearly 4.5 years ago. I spoke to the long term follow-up group last week and they think it's highly unlikely that this is related to the transplant, but he wants to talk with them himself.

Adrienne is feeling pretty fatigued but otherwise is well. She noticed that she has several new bruises. Her platelets are at 80K now, which isn't low enough to cause life threatening bleeding but much lower than her "usual" 400-500K. We'll just have to be patient and hope that things right themselves on their own.

Taking a Break

Adrienne says she's feeling just about normal now. (See her post below.) She saw the doctor yesterday and everyone agreed that it would be good for her to take a little break from treatment. Admittedly, this makes us a bit nervous but starting something new now doesn't make a lot of sense when she'll be coming back to the west coast in about six weeks, seeing her old doctor at City of Hope. This will give her a chance to totally recuperate and finish her exams while still feeling good. The only issue is that she seems to be having fevers caused by her tumors. The doctor suggested very low dose prednisone if these fevers become too annoying. Ugh! Besides the awful side effects of the drug, prednisone caused the AVN in Adrienne's hips so she typically stays away from it, but low doses don't have the same side effects as high doses.

Update From Adrienne

Adrienne here. I just wanted to let everyone know that I'm feeling much better but still recovering. I really appreciate all the well wishes and the packages people sent. It really does brighten my day when I get something in the mail, so thank you.

For now, I'm just trying to catch up from missing mid-term week. In terms of treatment, I probably won't continue on ABT-263. My mom and I have heard that other patients have had problems with respiratory infections and liver enzymes, so it seems safest to quit while I'm ahead. The next step will be conventional chemo which I'm not looking forward to, but I'm pretty confident that chemo still works for me and will quickly put me back in remission.