Well, I will start off by making my regular apology for the long delays in updating Chris' status. There is no viable excuse other than too much going on. I guess by definition that is a good thing. Yet I also know so many people have been so supportive for over a year now that it is my responsibility to keep the supporters informed. There is a great deal of news to pass on, so I will do it in my normal bullet fashion. Let's start off with the most important:
-Chris continues to do well and in my opinion is getting stronger every day. She has recently been saying with great conviction she "feels better now" than she did in January of 2008 when things started going downhill. I am amazed at her energy and it even tires me watching her. She is bound and determined to enjoy this summer after losing all of last summer. As such, I need to almost drag her into the house at the end of a weekend day after working on her gardens for 10 hours straight. She is exhausted when she gets into bed, but it is a great exhaustion, not from feeling ill but from working her rear-end off. She continues to go to the gym regularly, multiple times per week. Rarely has she been feeling any sense of nuaseau, and really has had no significant side effects from the coumadin (blood thinner). She still takes a fist full of pills every morning and evening, but rarely does she complain about that. I think it is just part of her routine and in the end she knows it is good for her. Chris recently had a bone density test as we know that the chemo is so strong that it can do damage to the bones, such as the hips. The test came back as borderline with some minor weakening and thus she has been told to increase her calcium intake, e.g. lots of milk. I hate to admit it, but I have been telling her this for years, she just does not get enough calcium (I know what her two grandmothers looked like in their late eightees), and since I plan on being with her for another 40 years, I don't want her to be bending over too much (but I'll take it if that is the biggest problem she has).
-Chris had some tests (blood and urine) done a few weeks ago at BU. The markers continue to improve as indicated here:
Lambda free light chains 7/2008: >760, 1/2009: 39, 5/2009: 32 Normal: 6-26
This shows further reduction from January to May, great news as still heading down
Lambda/Kappa Ratio 7/2008: could not calculate, 1/2009: .29, 5/2009:.30 Normal: .26-1.6
This is within normal range
24 hour urine protein: 7/2008 3700 mg/Day, 1/2009: 2800 mg/day, 5/2009: 2200 Normal is under 150, so we have more to go here, but it is still heading down.
So overall everything keeps heading in the right direction and when you combine this with her overall general health, we remain optimistic.
-Chris continues to read the other blogs of amyloid patients. She wants to reach out to them and tell them how important hope is, and show them that there is light at the end of this long tunnel, but she doesn't want to insert herself either. Some are having very tough battles, others doing well, and others have lost their loved ones. The latter is the one she wants to reach out and help the most, but she doesn't know how to. We both pray for all.
-Our friends from Ohio, Tim and Connie, have been making a tremendous, unselfish contribution to others less fortunate patients by creating a home in Boston for Amyloidosis patients who need additional support. They have provided and furnished an apartment close to BU and have been out raising awareness by contacting the medical community with some outstanding information pamphlets. I cannot overstate the passion they have to help others in the midst of Tim's own fight, which he is winning. Secure Harbors will help so many who need the help to win this battle. Here is their web site: http://www.secureharbor.org/goals.php
Chris went out today to furnish it with some of the funds Connie and Tim have already raised. It will be a much better option than living in a bad motel for many weeks or months. This is another way for Chris to give back. Connie ands Tim are in Boston this week and will continue to get the new apartment set up. This is really exciting.
Chris really struggled with whether she could go to visit Melissa in Australia in June. She wanted to badly, but in the end was worried that travel seems to still take a toll on her. She was also invited with some great friends to Paris but turned that down as well. Now her objective is a trip to California for one of Stephen's Junior Elite National Triathlon Championships in July.
Chris is due to go back to BU for the one year evaluation next month, possibly July. It will be her one year anniversary from the stem cell treatment this month and they want to do a full evaluation on their patients at that milestone. It is not scheduled yet, but will happen late June or July. As always, they will do the complete head to toe and organ examination. We honestly have no idea what the diagnosis will be and hat the treatment plan will be. Anything from another stem cell transplant/high dose chemo to a 6 month regiment of oral chemo to doing nothing.
The really exciting news is that Stephen and Aislinn were asked to come and present their senior project to the doctors and researchers at Boston Medical. Dr. Skinner and Dr. Seldin, who run the program asked them to come and make a presentation about their fund raising efforts, their ride from Florida to Boston, how they planned it, etc. It was really great to see two high school students in front of some of the worlds leading experts, explaining their senior project. It was a great presentation, they were both very comfortable in front of a large group making a powerpoint presentation. and it was very interactive. The doctors asked questions about the ride, who they met, the good and the bad, etc. They wrapped up with an update on the total amount raised: almost $58,000. This is against a goal of $10,000. So many people gave so much support, whether in dollars, hosting parties for fundraising, sponsoring the ride, letting them stay in their homes. The support just continues to be amazing. Every single dollar raised has gone directly to the Amyloidosis Research Foundation. Stephen and Aislinn were also invited back to do some "shadowing" with some of the doctors and possibly discuss internship opportunities. After the presentation, they were given a tour of the research center. Filled with graduate students, interns, etc, it was an exciting place to see. The tough part was seeing the station where they do the test to determine amyloidosis. This is where tissue samples from all over the world are sent, to be stained with congo red and placed under a polarized light looking for apple-green birefringence (effectively a green glow seen under the microscope). I am sure this was the exact station inside the lab where Chris' cells were first confirmed as having amyloid deposits. To me, my own personal feeling, was that this is almost the place where many peoples lives are determined. Do they have amyloidosis or not? Well, just look into the microscope and we will know one way or the other. Yes or No. Hundreds of peoples lives: patients, spouses, children, family members and friends of all types will be affected by what shows up in that microscope. Very strange for me to see where Chris' diagnosis was confirmed. I should have asked the question but did not: How many are postive for amyloidosis vs negative? My guess is that because this disease is so hard to understand and the awareness is so limited, that the vast majority are positive. Patients are well down the road before anyone does a test. In fact, one would hope that through greater awareness, more testing for amyloidosis would be done earlier and the ratio of positive vs negative would go down. In other words, testing for this was more routine, thus lowering the percent of positive diagnosis but more importantly catching this earlier by being more aggressive with the testing.
So this month of June, 2009 will be an important one for Chris and all of us. It represents a real milestone - 1 year since treatment, and we will know this month or next what the future course of action holds. I never assume this thing is beaten, and I worry that people start taking her progress for granted. This will be a lifelong fight that we can never let our guard down against. Being an aggressive advocate, all the time, never easing up, is the name of the game in this fight. It is easy to forget that there is no cure for amyloidosis. It does not exist yet. Until there is a cure, the research, the support, the aggressive advocacy all have to continue.
Thanks for reading. I'll post more often as some very important milestones are met this month.
Friday, May 29, 2009
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