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We’re Here!

Just a quick note to everyone that we are here at UM Hospitals, Darcy is in her room and is getting settled. It has been a very busy two days, but she’s doing great. As soon as we get organized and figure out where everything is I will start posting more frequent updates. For now, know that Darcy is feeling good and looks forward to getting started with the chemo tomorrow morning. If you would like to call her on her cell phone, she would love to hear from her friends. For other correspondence, I will update her contact info on the “Contact Darcy” tab above. Here is her new address and phone # in the room:

Send mail to:

Darcy Sullivan

University of Michigan Hosp.

1500 E. Medical Center Drive

Room 8A-117

Ann Arbor, MI 48109-0110

In room phone:  (734) 936-8117

We’ll let you know the news as it happens over the next few days, and I have some posts about some of the procedures and treatments that Darcy is going through that I will work on over the next few days.

Full Steam Ahead

We’re home from Ann Arbor. Both of us. Darcy is happy to be home for the next 5 days, and we’re very happy she’s here!

Darcy met with some of the doctors today, had a couple of tests done, and was pronounced ready to begin the process of stem cell transplantation. Doctor Levine  inspires plenty of confidence in us, and his optimism is reassuring.

We have appointments next Thursday and Friday, and then Darcy will be admitted to the hospital on Friday afternoon. She will begin two days of chemo on Saturday, and then gets three days of radiation therapy (twice a day) to zero out her bone marrow. On Thursday Nov 12th they will begin infusing the stem cells harvested from Angie.

And then we wait.

We wait for Darcy to recover from the treatments that will save her life.

We wait for the marrow to begin producing blood cells on its own.

We wait for Angie’s immune system to engraft itself onto Darcy’s body.

In 10 to 14 days, the “graft” cells should overtake the “host” cells, and create a phenomenon known as “graft vs. leukemia.”  Instead of having to wait for the leukemia cells to multiply and reach a point where they make Darcy sick (as they did back in August) and then treat it with toxic chemicals, her “new” immune system will work the same way any other healthy immune system does. A few leukemia cells grow in her bone marrow, and the immune system recognizes them as enemy cells and immediately kills them, long before they pose any threat to Darcy’s body. In this way we have lots and lots of the good guys on constant lookout for a handful of bad guys. And they know exactly what the bad guys look like and where they are. Easy huh?

I will likely spend most of the month of November with Darcy at U of M. From next Thursday until around Thanksgiving, when she should begin feeling better and when we will know whether the graft was successful. Dr. Levine said that if things go as expected she might be discharged within four weeks of the transplant- but not any sooner. From there she will go to an apartment in Ann Arbor, where she will need to have someone with her all the time, to help her with meals, etc., to monitor her and drive her to the clinic when necessary. Those who have volunteered to help in this regard will be needed during this phase. Hopefully after a month of this she will have had no serious complications and will be able to come back home.

We are not looking forward to the unpleasant aspects of the treatment that lies ahead. But we know that this represents a good chance for a cure for this plague that has invaded Darcy’s body. The sooner it begins, the sooner she is back at home with Connor and me, helping him with homework and making our house a home once again. For good.

Full steam ahead.

Corner Bar Benefit

Save the date!

Invite your friends and family and raise money for the Sullivan’s to help defray medical costs and expenses:

  • Monday, 12.14.09 
  • Corner Bar in Rockford
  • 15% of all sales this evening will go back to the Sullivan’s 

Further details and confirmed times will be posted at a later date. Thank you for your continued support!

 

To My Brother, Dan

The passing of my brother-in-law this week came as a shock to us, even though we all knew it could happen any day. Such incongruity seems unfair somehow; we should be able to prepare ourselves with a little notice, right? Doesn’t seem to work that way.

I’ve thought a lot about Dan and what he means to his friends and family. Based on the outpouring of support from his hundreds of friends, it is obvious that they regard him as a true-blue friend, one who makes them feel special not because he wants something from them, but because he feels he has something to give to them. I’ve never seen the kind of love and loyalty poured out to someone as I have since Dan became ill.

I can only speculate as to precisely what Dan means to his family. I have a pretty good idea what he means to my immediate family. However, the only thing I can write about authoritatively is what he means to me. I’ve tried to put that into words in the last twenty-four hours but I can’t find exactly the right ones to describe it. I recalled that I had written a letter to Dan in the days following his diagnosis on Aug 21, 2007. I wanted to let him know what having him in my life meant to me then. I’m afraid I can’t improve upon what I wrote then, and I want to share it with those who read this blog. Since Darcy and I will be in Ann Arbor on Friday and must miss his funeral, let this be my eulogy to Dan. Here it is in its entirety:

Aug. 25th, 2007

Hey Brother,

I am so sorry to hear the news about your health. I can’t say or do anything that will change anything, except to attempt to put into words what having you in my life means to me.

You’ve been the older brother I never had growing up. Someone to look up to, someone whose accomplishments have been cheered from afar, if not always from within your own earshot. You never failed to make your family proud.

I recall the first time I met you, at Valley West Mall. I remember wondering if anybody could truly be good enough for my sister, but it didn’t take long for you to win us over- all of us. You will remind me that after we bid you farewell, I couldn’t find where I had parked the car. We had to wander around until I remembered where the car was. I was lost that day, and to tell you the truth I’ve been feeling pretty lost this week too.

One time when I was in Des Moines I came to visit you at your work downtown. We went someplace to grab some lunch- I don’t remember where- but what I do remember is thinking that you knew EVERYBODY in downtown Des Moines. And that everyone sure seemed happy to see you. I was proud to be seen with you, as if some of your charisma might rub off on me. It didn’t.

There were certainly times when you embarrassed the heck out of me, too. Like when- before I met Darcy- we’d be in Walmart or some convenience store and you’d randomly try to set me up with whatever girl happened to be at the cash register. Very funny. I’m sure you thought you were helping me out. Thanks buddy.

One time when I lived in Marshalltown you were in town for a softball tournament or something and we played a round of golf together. I’ve always been amazed at how hard you hit the ball. I was impressed that day, as I recall you played pretty well, but you were by far the best I’d ever played with. Still are.

Though not always does the ball fly straight and true. Remember the back nine at Edmundson in Osky when you hit the ball straight into the crapper? Did you get a ruling on that? You probably salvaged par out of that somehow. I played in the same foursome with you several times, but I never ever played the same game as you.

We’ve all laughed about the first time Lisa made a home-cooked meal for you. I don’t remember whether you ate any of that leather-tough steak or not; Lisa says I wolfed it down after she invited me over to “share a meal” with you guys. It may have been bad, but not as bad as what we were cooking in my apartment. You probably chewed it up and swallowed it, smiled and lied through your teeth about how good it was. I doubt you’ve ever lied about much, except to spare the feelings of someone else. That’s part of why we all love you: you help us feel good about ourselves, through kind words and encouragement.

The day you married my sister stands as one of the happiest days of my life. You made my parents both very happy too, as we could all see that Lisa had made a wise choice. I know that mom in particular was beside herself with joy. That was the first day I could officially call you my brother; you’ve never been an in-law to me.

I’ve been inspired by things you’ve done that have made a huge impact on my own life. When I saw that FedEx was a pretty good gig, you encouraged me to pursue it for myself, though I know your wife had some grave reservations about my record of punctuality. It has been a good career for me, as it was for you too, but the time came for you to pursue other opportunities and you moved on to the next chapter. That too inspired me, for I don’t know if I would have had the gumption to decide to return to school without having watched you make the leap first.

The time we all went fishing in Canada will stand as one of the high points of my life. That was a lot of fun, even if the boat was way too crowded. It’s a wonder nobody got knocked overboard! Those shore lunches sure tasted good, and it was a real kick just being out there. The only time I’ve ever seen a Customs agent smile was when we crossed into Canada, and when he asked some question about what was in the back of the Jeep, you made some disparaging remark about Roger and I- I still don’t know what you said, but I was pleased no guns were drawn. The most amazing thing I’ve ever seen while fishing- apart from the time I caught that snake at Lake Keomah- was in Canada when you had something on your line, and you said “I think I’ve got a crawdad on the line.” Sure enough, you did, and how you could tell that’s what was moving your line is beyond me.

When Darcy was pregnant with Connor, we talked at great length about what kind of parents we wanted to be. As is often the case, I imagine, we discussed how we would handle different aspects of child rearing, and of course we disagreed on a number of things. The one thing upon which we instantly agreed was in response to this question: if we could be as good a parents as any one we know, who would we be like? Dan & Lisa. Next question?

The measure of any tree is the quality of the fruit it bears. By that measure, you guys score extremely well. I know I’m not telling you anything you don’t already know when I say that you’ve got a pair of first-rate kids in Brette and Blake, and that of course doesn’t happen by accident. For most of us, unless we win the Nobel Prize or something, our most important legacy is our children, for they are the most likely part of our lives to survive well beyond our own years. Rest assured that your legacy is in pretty good shape. Well done!

As I’ve spent time this last week thinking about you and what your friendship has meant to me, I couldn’t help but focus on something that must strike all who’ve thought of this as the cruelest of coincidences. I know you’ve worn number 4 on the back of your jersey for as long as I’ve known you, and for a long time before that. As you well know, that is also Lou Gehrig’s number- the first to ever wear it and the first number ever retired in Major League Baseball. What people remember about him is his will to continue through adversity, first during those 2,130 straight games he played, and then as he fought against ALS.

From what I understand, the most important thing you can do is remain positive in your outlook. As tough as that sounds, I’m certain you’re up to it. Pray for a miracle. A preacher at a mega-church in Grand Rapids, Ed Dobson was diagnosed with ALS 7 or 8 years ago. I heard him say a couple years ago, “Every day I ask God for a miracle. Whenever I meet him in heaven, I’ll know then his answer was no. Until then, I assume he’s considering it.” He still spends his days traveling around the country speaking to groups, raising awareness of ALS, and spreading the Gospel of Christ. Pray for a miracle every day. We are, and so are several hundred of our closest friends, in churches all across West Michigan, in Florida, Texas, in Ireland, and in places we don’t even know about. Maintain hope; hope is never wasted. It can see you through the dark days, and make the sunny ones even brighter.

Dan, the way you have lived your life for the last 40+ years has netted you an enormous group of friends who will do anything they can to help. Take advantage of them. Both you and they (us) will feel better. Remember that you have been there for us in the past, and now it’s our turn to help. Nobody offers it out of obligation, but rather out of love and admiration.

So, Brother, we’ll see you when we come back in October. West Michigan is pulling for you. Hope is never wasted.

Love,

Blaine

Dan is a devoted husband, father, brother, son, and friend. We miss him already. We know that he is in heaven today, that his legs are once again strong, his grip sure, and his words crisp and kind, as always. Our loss is The Lord’s gain, and when we meet again someday I will say to him, “Well done, Brother.”

The Next 2 Weeks

I know many of you are wondering about the schedule of Darcy’s upcoming treatments at the Univ. of Michigan. I haven’t posted anything about it because, frankly, we don’t know much more than you do. But here is what we DO know:

This Friday  (Oct 30) we go to Ann Arbor to meet with the doctors and transplant coordinator so they can inform us what will happen, when it will happen, and what to expect when it happens. Darcy may be released from the hospital (Lacks) just for the day or maybe permanently prior to Friday; it all depends on the blood counts, which haven’t been rising as fast as we’d like.

Next Thursday (Nov 5) we have appointments for a number of pre admission tests and will spend the night in a luxury hotel suite (i.e. Motel6, Super8, etc.) in Ann Arbor. The following morning at the un-holy hour of 0630 Darcy is scheduled to have her central line installed, through which they will administer drugs, blood products, stem cells, coffee, etc. Then we will have several hours to gallivant about Ann Arbor until she officially becomes a resident of U of M Hospitals in the mid-afternoon. Then, depending upon which email we choose to believe, the chemo and radiation used to prepare her bone marrow for the transplant (i.e. kill it), will begin on either Saturday or Monday.

These schedules are notoriously slippery things, as we’ve learned, and are so because of the rapidly changing environment of the hospital and Darcy’s medical progress, or lack thereof. Historians have long known the maxim of the Generals: No battle plan survives first contact with the enemy. Thus it is with treatment plans and schedules. We will learn many more details this Friday, and will pass along as much of that information as possible over the weekend. And of course we will keep you updated as the process moves along.

Please keep us in your prayers as we enter into this new phase of treatment. Specifically, pray for safe travels, rising white blood cell counts, and wisdom on the part of the doctors (and Darcy and I too!).

A Death in the Family

I just received word from my dad that Dan Dowson (my sister’s husband) passed away early this afternoon. We all knew this was coming but are finding that doesn’t make it any easier. Please pray for Lisa, Brette, and Blake as they mourn the loss of this wonderful man, and find the means to cope with his loss. Keep the rest of us in your prayers as well.

 

Volunteer Website

We have found a website to help us better communicate what the needs are for Darcy, Blaine and Connor. There is a calendar that details by day what the needs are. All you have to do is click on the item that you would like to help out with and it will put you in contact with the “Coordinator” for that item. It is a fabulous site!

To get started click on this link: http://www.lotsahelpinghands.com/c/619245/ and request “to be a new member.” Signing up does not commit you to volunteering.

Thank you for your continued support of the Sullivan’s!

We just got word from Susan, Dr. Scott’s NP. And that word is…………REMISSION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

After 79 days of praying, and waiting, and worrying, and waiting and praying, and dealing with the chemo, and waiting (again) and praying (every day), the news is finally good. We will hear more details from Dr Scott later, either tonight or in the morning, but for now we relish the good news.

We will find out more details in the next few days regarding what comes next. She will still be going to Ann Arbor for the bone marrow transplant in a week or two, and the road ahead is long. However, this should smooth out some of the bumps. Tonight, we rejoice!!!

Prayer Request

This past weekend I traveled to Iowa for a brief visit to my sister and her family. As most of you know, my brother in law Dan has been battling Lou Gehrig’s disease (ALS) for over two years. He was recently taken to Bright Kavanaugh house, a hospice facility in Des Moines. After several days of increased difficulty sleeping, they have adjusted Dan’s medication, allowing him to rest. Over the weekend the doctor detected pneumonia in one of his lungs, as Lisa wrote in their blog yesterday:

“The congestion that Dan has been battling has turned into pneumonia.  He can’t really fight the pneumonia since he can’t cough and clear away any of the congestion.  Since he is much more comfortable sleeping, they have increased his medications so that he is sleeping most of the time.  When he is asleep, he is not struggling to try to cough and clear his throat or feeling like he is short of breathe.” -http://www.caringbridge.org/visit/dandowson/journal

Please keep Dan, Lisa, Brette and Blake in your prayers. Pray for Dan’s comfort and that he be free of pain, and for peace and strength for Lisa, Brette and Blake. They have all shown such enormous strength and grace throughout this long, tragic journey, and are a daily inspiration to Darcy and I, as well as their many, many friends in Iowa.

Biopsy Tuesday

So, Dr Scott confirmed that the bone marrow biopsy will be done on Tuesday morning. We will then get the results on Wednesday evening, if past results are a reliable indicator. We are praying that the results will find her in complete remission, and she can move on to Ann Arbor with a stronger hand to play in the transplant phase. Darcy continues to feel better each day as her strength returns following the latest round of chemo. Her blood counts are rising now after bottoming out early last week.

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