First, an update on Darcy.  She is doing very well since she came home three months ago. Once each week she has returned to Ann Arbor for bloodwork and appointments with her doctors. Last Friday she saw Dr. Levine (her transplant team lead and the director of the transplant program at UM), who said that she is doing great! Every index they look at shows that she is exceeding their expectations in every area. Most importantly, the transplant has taken root in her body and by every indication is doing exactly what they hope it will. While she doesn’t feel great all the time yet (and we certainly didn’t expect that she would), she generally feels a bit better week over week. Fatigue is still a frequent companion, but she is getting stronger. She walks 15 minutes every day on the treadmill, and is doing more around the house than before. In time she will be back to normal, though we know it may be a long time; full recovery takes anywhere from 1-5 years after transplant. Obviously, we’re hoping and praying that it is on the shorter end of that scale.

All three of us are making the adjustment to normal life once again. Connor is playing baseball this spring, and seems to be doing pretty well. Next year he will be in middle school, and we are trying to impress upon him the need to be diligent about homework. He is able to skate by and still get good grades now, but he won’t be able to next year.

Darcy is easing back into normal activities, such as the day a week or two ago when she went grocery shopping by herself. She was tired afterwards, but it felt good to be able to do it once again. She goes to all of Connor’s ballgames and practices, spends time with her sister and friends, and does a little more housework each week.

Six weeks ago I switched from second shift to days, giving me afternoons and evenings with Darcy and Connor. I’m enjoying it a great deal; I don’t even mind getting out of bed at 4:30 a.m.! Things look brighter with Darcy home and doing well. Though it may be a while before I can get back to student teaching etc., I did register for some classes, and I’m very excited about getting back into the classroom.

Thanks to all who have followed this blog over the last nine months, for your prayers, your encouragement, and your support. Please continue to check back from time to time, but if it is not updated, please understand it is because things are going well, and that no news is indeed good news.

•Starts tomorrow until April 16th

•Darcy will receive 40% of all orders

•Pass out attached flyers to your friends and family – taking  orders just like a school fundraiser works (flyers can be emailed directly if you are having problems printing)

•Not interested in handing out flyers/taking orders?  That’s okay, you may place a personal order

All questions should be directed to Julie at prplerose23@yahoo.com.

THANK YOU

We have another benefit coming up to help the Sullivan’s defray the rising medical costs and expenses associated with Darcy’s leukemia. Join us this Monday, 3.1.10 at Rak Thai Bistro – 5260 Northland Dr NE, Grand Rapids.

20% of meal proceeds this evening will go to the Sullivan’s. Yes, you read that correctly – (20%) twenty percent!!

-Take-out is included in this promotion
-Valid from 4pm – 9pm
-Just mention you are part of the Sullivan benefit to your server, or when you call in the take-out order

BE SURE TO PASS THIS ON TO ALL OF YOUR FRIENDS AND FAMILY! And yes, Darcy WILL be attending!! :]

Thank you!

We have another benefit coming up to help the Sullivan’s defray the rising medical costs and expenses.

Monday, 3.1.10 at Rak Thai Bistro – 5260 Northland Dr, Grand Rapids – [www.rakthaibistro.com].

15% of meal proceeds this evening will go to the Sullivan’s.

Hope to see you there! More details to come…

It’s nice to have something to report that doesn’t require adding any context or explanation. It’s just simple good news that I wanted to pass along to you.

Last Friday she had an appointment at the clinic in Ann Arbor, the first since she came home. Dr. Levine told her she “[is] doing great, but you’re not out of the woods yet.” This is a reminder to us all that while things are going very well right now, this fight is a long way from being over. Next week she goes back for the 100-day bone marrow biopsy, which will tell us, among other things, whether the leukemia is still being successfully suppressed by her new immune system, and give some clues to how the transplanted cells are reproducing and flourishing. Graft versus host disease is still a concern; indeed, it most commonly manifests after the 100 day mark after the transplant.

I am given to making historical analogies, and this is no exception. While many diseases and (especially) injuries have serious, even deadly consequences, there is a point at which it becomes possible to declare victory and no longer worry about its return. For example, pneumonia can be deadly, but after recovery one is hardly more likely to experience it again than he was before. Some heart conditions are treated so effectively that the same is often true. The analogy that comes to my mind is the Second World War, indeed most wars up to that point: an existential struggle characterized by pitched battles, perhaps a long struggle, but which ends in a dramatic surrender or treaty that signifies a clear end to the hostilities.

Cancer (and, I believe, especially non tumor cancers such as leukemia) is not like that, but more like our current war against the terrorists. The only way we know it is over is when there aren’t any more attacks. Similarly, we will only know that Darcy is cured when she no longer has any relapses or recurrence of leukemia in her bone marrow. What that means, as a practical matter, is that we will never be able to say with confidence that she is cured. The most we will be able to say is that at this point she has no leukemia. Of course, that’s not nothing; we will be very happy if we can say that for the next, say, 40 or 50 years. But I am just superstitious enough to be very wary of actually saying she is cured.

Yesterday we moved the rest of our things out of the apartment in Ann Arbor. I now have my wife and all of our “stuff” here at our home in Sparta. Darcy and I have somewhat different viewpoints on this. While I am thrilled to have Darcy home permanently, I will miss spending time in Ann Arbor. As I’ve written before, I truly fell in love with the town. It fits my sensibilities very well, and any town that has that many good used bookstores is bound to have an attraction. I lived for many years in a college town (Iowa City, IA) and enjoy being around the intelligentsia that inhabits those towns. Finally, and most importantly, I view Ann Arbor as the place where the doctors saved Darcy’s life; without the treatments she received there, she would no longer be with us.

On the other hand, Darcy tends to view the town as the place where she was so sick, and no doubt felt  like a captive of the hospital and the town at times. Being there necessarily took her away from her family and friends, and those who know her know that nothing is more important to her. In time, I hope that she will view Ann Arbor in a more positive light as the memories of how awful she felt during most of the time she stayed there recede into the distance.

We will have many opportunities to revisit Ann Arbor, since she will be making many return trips for checkups and appointments. Anything having to do with cancer and leukemia will be dealt with at U of M, since any treatment going forward must apparently be viewed through the prism of the transplant. They are the experts on that. For the next few months Darcy will be returning once every week or two as they remain vigilant of a relapse or complications.

It is amazing how events change our outlook. While I have not given up on pursuing the career change we’ve been working towards the last few years, we did put it on hold indefinitely once Darcy’s diagnosis became known to us. I had gotten used to not knowing when, or even if, I would be able to return to school and finish the two semesters of student teaching that stands between me and teacher certification. Suddenly last Friday when Darcy came home, it seemed far more possible than it has for the last six months. We are still a long way away, as Darcy will need to return to work (in order to obtain health insurance) before I can take the time off from work to finish school. But it feels much, much closer than it did two weeks ago.

Thanks to all of our friends and family who have supported us so faithfully over the last half-year. Your prayers, thoughts, visits, gifts of time, money and food have been and continue to be very important to us. Without them we would be…I don’t know where we would be. You and our Lord have meant everything to us on this journey so far. Please continue walking alongside us for the rest of this odyssey; we so want to share the good times we know lie ahead as we have the bad. We’re excited to see what He has in store for us next.

Stay tuned!

Six months ago today we learned that Darcy had a form of Acute Leukemia. She had been in the hospital for a couple of days at the time. Over the next few days we would learn more about the disease and the road that lay ahead for us. It seems so long ago…now.

Early that morning I was unable to sleep, the first of many, many sleepless nights. Not knowing what else to do, I began writing. At around 6:00 a.m. I posted the first post on the blog that was to become so central to our lives, and our connection with so many friends and family. I titled it “Here’s what we know so far…”, and outlined Darcy’s situation as we then understood it. Since that time I’ve posted a total of 173 items, some serious, some funny, some poignant, some downright silly. We’ve had fun with it, and it has been a lifeline between us and our friends and family. You’ve posted 457 comments on the blog, and as of this afternoon there are an astounding 30,936 total page views! My goodness, I never dreamed when I sat in this very chair six months ago in the wee hours, typing wearily on my computer, that even a hundred pairs of eyes would ever read them. Thanks everybody for paying attention!

Three months ago today, Darcy and I drove to Ann Arbor for pre-admission testing in preparation for Darcy’s bone marrow transplant. We didn’t leave the hospital for many days. She endured two days of the vilest chemo they had to offer, followed by three days of TBI, an innocuous sounding acronym for Total Body Irradiation. It made her sicker than she had ever been. It made her wonder, no doubt, whether the “cure” was worse than the disease. And in the days, weeks, and indeed months ahead it surely made her wonder whether she would ever feel good again.

She feels good again.

Which brings me to the Red Letter Day. Darcy is coming home today.

Let me say it again, in case you didn’t hear me the first time: DARCY IS COMING HOME TODAY!!!!!!!!!!!!!!

Thank you Lord, for watching over her!

However, as I thought more about my immediate family, it occurred to me that we all owe our lives directly to modern medicine in one way or another. Dad has had three heart attacks, and likely would not have survived them if not for modern procedures to open blocked arteries. I had an appendectomy in 1988; the first such successful procedure was performed in 1885. My brother has type I diabetes, diagnosed at age 14. The only effective treatment -insulin injection- was introduced in 1922. Prior to that, both diabetes and appendicitis  sufferers died after an agonizing (and relatively short, in the case of a burst appendix) period of illness.

My sister is a cancer survivor, having been successfully treated seventeen years ago. Those treatments have kept her free of cancer since. Her husband Dan recently passed away following a tenacious battle against Lou Gehrig’s Disease, for which there is still neither a cure nor effective treatment. And as everyone reading this blog knows, Darcy is currently being treated for leukemia, which according to the doctors would have taken her life within weeks of diagnosis without the chemotherapy that drove it into remission.

Connor was born six weeks premature, and spent a couple weeks in the neo-natal ICU before we were allowed to bring him home. He might have survived a similar beginning a hundred years ago (my grandfather was born in 1911 weighing less than three pounds), but chances are against it.

Being a student of history I am given to feelings of “Wow wouldn’t it be cool to have been there for the signing of the Magna Carta” or any other significant event from throughout history. Who wouldn’t be thrilled to witness the American or French Revolutions, or the Battle of Hastings? However, it seems that had any of my immediate family been born even a hundred years earlier, it is unlikely that we would be alive at our present age, given the history of medical advancement, and its prior limitations. Which raises an important (and somewhat vexing) question: How did so many of my ancestors live to such a ripe old age?

I’m sure the answer is a combination of many, many factors. Though my paternal grandparents were both fairly heavy, most of the pictures of previous generations show them to have been fairly trim. Being farmers, they all did a great deal of hard work- this being the era before big tractors, or tractors at all for that matter- and they didn’t have a McDonald’s down the road to tempt them. I do know that their diet was anything but low-fat; lots of butter, beef fat and bacon to flavor the many vegetables and other staples they ate, and meat was the centerpiece of every meal. I think, however, that Michael Pollan’s new book Food Rules: An Eater’s Manual provides some important clues. For those who haven’t read any of his books or seen him on television, he advocates a sort of back to basics approach, especially avoiding highly processed foods that are so pervasive in so many of the foods we eat.

Other factors that might contribute include the sedentary lives most of us lead as compared to our ancestors, the plethora of chemicals that bombard us from all directions, and and perhaps the stress of modern living (though I’m not necessarily inclined to believe our lives are that much more stressful than those of our ancestors; we may be less equipped to deal with the stress due to the factors mentioned above.).

In any event, I find it interesting that a majority of the increases we have made in life expectancy over the last few centuries come down to two factors: gains in infant mortality, and (especially) drastic reductions in the number of women who die during childbirth. Modern medicine has made many advances in the treatment of many serious diseases, and Darcy has been the beneficiary of those improvements in technology. The price of such technology is very high, as we have also learned. However, I wonder if the gains made by modern medicine aren’t mostly offset by the hazards of life in today’s environment. As Paul Harvey used to say, maybe we’ve outsmarted ourselves after all…

Since returning to the hospital nearly 2 weeks ago, they have been trying to determine the reasons for her ongoing lack of appetite, relentless nausea, and subsequent weight loss. They have run numerous tests, from GI scopes to CT scans to ultrasounds, and have eliminated a number of potential causes. Apparently she has some sort of a bug that she has been unable to get rid of on her own; they have treated her with steroids and various other drugs that seem to have helped. She has been able to eat better in the last few days; she even told me that she has been hungry a couple of times! She also has kept everything down, and feels much better than she did the last several weeks.

We are hopeful that after a few days at the apartment she will get the green light to come on home to Sparta, if she continues on the track she is currently on. Connor and I are so looking forward to having her here with us. It has been a very long time- three months since she went to Ann Arbor, and six months (on Wednesday) since she was admitted into St. Mary’s- since we have all spent an evening home together. We are ready.

Though it is not yet official, I expect that I will be switching to a day shift in the next couple of weeks. If we are fortunate, that will coincide with Darcy’s return home to Sparta. We are looking forward to being able to spend evenings together the way a family should.

The toll this ordeal has taken on all of us is substantial. That Darcy has been through considerable trial is obvious; the difficulty for Connor and I has been great, if less apparent. Connor misses his mom terribly, though he doesn’t say so explicitly, and has had trouble focusing on his schoolwork, especially since going back after Christmas break. I think that having some normality at home will help him immensely.

I am exhausted, emotionally more than physically. Some normality will help me too, no doubt. Talking to Darcy on the phone once, maybe twice a day doesn’t cut it, although the couple of days that she didn’t feel like talking at all were agonizing for me. It was better when I was there with her; at least I could see that she was okay, or at least I knew exactly how she felt without having to decipher her words over the phone. I have run out of days to take off work to care for Darcy, and so must go to Ann Arbor only on the weekends. Of course that is draining too, though not seeing her is in many ways worse. (We stayed home this weekend to try and catch our breath a bit.) We will go over next weekend, assuming she is still in AA then. Please keep Connor and me in your thoughts and prayers as well as Darcy. We all need them.

IF you are able to help us out this week anytime between Monday and next Saturday, please contact Darcy (446-4033) or me (446-4077) or Dana (260-3567) or sign up on the Helping Hands website .

Thanks for your help and have a great day!