• Barring any unanticipated delays, I’ll start the conditioning regimen for my myeloablative stem cell transplant next week, on June 3.  I’m scheduled to get three days of chemo (fludarabine and cytoxan), a “rest day,” and then four days of total body irradiation (TBI).  The goal of the conditioning is to eliminate (ablate) my existing bone marrow (and immune system), and kill remaining leukemia cells in my system. 
  • On or about June 11, after the chemo and radiation conditioning is complete, I’ll get my new stem cells via a transfusion.  The idea is that these new stem cells (from two units of umbilical cord blood donated by parents after the birth of their children in New York state and somewhere in Italy) will then be able to engraft in my marrow space, begin producing new blood cells (and thus a new immune system for me), and eliminate any lingering remnants of my leukemia.  I’ll be getting two cord blood units because research has shown that total cell volume–even when achieved by combining two separate cord blood units–is crucial to the success of the engraftment process.  (The amount of stem cell-rich cord blood that can be collected after the birth of a single child is, not surprisingly, pretty low compared to the volume of stem cells that can be harvested from an adult donor.)
  • Remarkably, the two cord blood units only need to be matched to me (and to each other) in four out of six major HLA types.  Because umbilical cord stem cells are “naive,” they are able to demonstrate significant flexibility and adaptability as they engraft and establish a new immune system.  By contrast, adult stem cells need to be matched in ten out of ten HLA types to ensure a comparable level of success.
  • The chemo and radiation will take a lot out of me.  While they will target my faulty marrow and the leukemia it is producing, they will also affect other fast growing cells in my body.  It sounds like one of the least pleasant side effects of the conditioning will be the mucositis that results when the cells lining my mouth and GI tract temporarily stop regenerating.  Fortunately, the medical team here at the Hutch is tremendously experienced at dealing with mucositis, and all of the other side effects and complications that can crop up, so I feel like I’m in good hands.
  • After the June 11 transfusion of my new stem cells, it will take anywhere from 10-30 days (the sooner the better) for the new cells to engraft.  Once the cells have engrafted, and as long as my blood counts are starting to recover and I am able to drink, eat, etc., I will be released from the hospital and be able to head back to our apartment near the out-patient clinic.  The best case scenario for my upcoming hospitalization is probably a 25 day stay; more likely, I could be in for 30-40 days.  It’s not my idea of the ideal way to spend the beautiful month of June, but considering my options, I’m certainly not going to complain.
  • It’s been a long haul to get here, so we’re eager to get started.  There’s lots of worrisome stuff ahead (mucositis, the possibility of graft versus host disease, the nagging fear of relapse, and probably many things I haven’t even begun to consider), but it’s good to be moving ahead towards a cure.
  • Thank you for your messages of support.  Lisa, the girls, and I are grateful for them all.

17 Responses to “Transplant Schedule Firming Up”

  1. lea Says:

    Roger- You have a date set! You have been on your way but the feeling of moving forward must be exciting for you as well! Try your very best to take one day at a time. This is a long long journey and one that you will get through with a few bumps- but you will get through it. REST REST RES- EAT whatever you possibly can. SOme extra weight going into this will help.


  2. Roger, Lisa, Amelia, and Izzie,
    We are sending thoughts your way, along with much love and strength for the upcoming days and weeks. We will breathe the Vermont June air and send it along, too, waiting to see you in late summer here in Addison County-or points close by. We hold you close.

    xxoo,
    Holly and Bob

  3. Cindi Says:

    Roger, my heart goes out to you. I am so glad you have so much support. Hang in there (which I know you are!) My love to you, Lisa and the girls.

  4. Kevin Hicks Says:

    The Italian cord blood, I understand, is robust and spicy, with hints of oak and foot. Y’88 gathers this weekend in New Haven for their 20th. Looking forward to having you and the family here next year at this time. Hal Brooks sends his best. We shared a cheeseburger at Louis’ and thought of you.

  5. Jan Schrader Says:

    Roger, I continue to be in awe of your blog and your understanding and communication of what’s happening. You are no doubt unique!

    As always, love and prayers as the journey continues.

    Jan and Bill

  6. kristin gerlach Says:

    hey roger, you make this sound so matter of fact – you are truly amazing! i’m sure your brave positive attitude is going to continue pulling you through this process. the photos of the girls at the garden are terrific. looking forward to seeing you all soon.
    kg

  7. Suni Says:

    Dear Roger,Connie, Lisa and girls,
    I’m with you in prayers.
    Love Suni

  8. Ted Prince Says:

    Roger -

    Saw Kevin Hicks and a bunch of Yale 88ers this weekend – many old friends. Our thoughts and prayers are with you. Am in DC and would love to reconnect when you get back to town. My niece – Eliza – had leukemia and a bone marrow transplant from chord blood 6 1/2 years ago. She is doing GREAT. If you would like to talk to my sister – am more than happy to arrange.

    Look forward to seeing you soon.

    Ted

  9. Chip Kenna Says:

    Roger,

    Good to hear there’s a date set. This is amazing technology… one of our RM’s had this done 7 years ago and it still going strong!

    Best wishes from the East Coast.

    Chip

  10. Ken Nash Says:

    To Roger and family,

    Thank you so much for keeping us in the loop regarding your challenges. Roger, you are really on top of this medical lingo. Not many people could do that – not even you clever foreign service officers who know lots of languages.

    We see that the girls have your linquistic gift. How are they doing on their stories and drawings?

    Our thoughts and prayers are with the family every day. And we look forward to seeing everyone in August!

    Suzanne, Jennie, and Ken

  11. Judy Olinick Says:

    Dear Roger, Lisa, Amelia and Iszy,
    It’s wonderful to read all the messages wishing Roger the best possible outcome and fastest possible recovery.
    As always, we send our most positive wishes too. We’ll be thinking of you and listening for good news.
    Judy and Mike

  12. Yael Says:

    Roger:

    Sorry for disappearing for a bit – was in the US for the past 9 days visiting family and going to a friend’s wedding. I am thrilled to hear that your treatment is moving forward – the mucositis sounds vile, but at least it is a step on the road to your getting better. And hurry it up – you’ve got a front row seat waiting for you at some November nuptials in Cairo, where the bride will insist on a dance with you – no lame excuses about how you’re tired from the chemo and transplant, ok!?! As you can imagine, Andrea and I are delighted not only that you are moving forward with treatment, but that NY-ers and Italians are playing a role!

    Good news is that, after a horrid battle (details to be provided over a glass of liquid gold when next we meet), I am paneled for Tripoli. So, if you’re looking for a destination for the 2009 Kenna family vacation, there’s a beachside villa waiting for you in Libya …

    Miss you, and sending all my best to you, Lisa, and the girls,

    Yael

  13. Karen Thune Says:

    Hi, Roger,

    I am so sorry to learn of your recent history of cancer, but so very thankful that you and your family are now committed to a course of treatment that sounds so promising.

    I am so thankful for the medical science that, if successful, will give you your life back. I’m also thankful for God who has all of our times in his hand.

    Your honest but positive explanations of what’s happening to you are amazing. Your “family” of supporters are a tribute to you and your own family, as you forge ahead with the paradox of infusing “killer chemo” in order to regain your health.

    My prayers are with you today and this week. I’ll be eager to hear of the complete success of the treatment plan. My love to Lisa and your girls.

    Karen

  14. Roy Says:

    Just to let you know, we’re following the treatment and praying in our own particular way. How’s Mr. Watson?
    Roy

  15. Peter Mulrean Says:

    Roger, Just read your latest posting. I hope that all is on schedule and going well. You, Lisa and the girls are in my thoughts. Keep strong and positive.
    Yours,
    Peter

  16. Greg Felt Says:

    I have a few lines memorized from a 70s book on running big water. For me, the metaphorical value of some of the big drops I’ve run spreads throughout my life. Think of your next step as shoving off from shore…it goes like this:

    The big drops contain a certain “all on the line” finality that is not often found in other pursuits. You can brake a sports car, check to the side of a ski slope, or luff a sailboat into the wind. Commit a raft, kayak or dory to the power of the river, though, and you must make the run, in the boat or out of the boat, in one piece or in several. What does it take to face this point of no return? Ernest Hemingway defined courage as “grace under pressure” and that is essential. So is the ability to be energized and not paralyzed by fear. Boatmen know what Winston Churchill meant when he said “Play for more than you can afford to lose and you will learn the game.”

    Go forward, brother!

    Greg

  17. Sean Bourke Says:

    Dear Roger:

    Have been thinking of you lately as I turn the pages of 3 Cups of Tea and harken back to some magical memories of our brief time in the Karakoram. I’m only a few pages in but Mortenson’s saga sends echoes of the hospitality and warmth of spirit that we experienced on our journey and I can’t help but think of you fondly as I reminisce about the rapturous beauty of those numinous heights. Here’s to the next trip to the Baltoro but in the meantime, I’d would love to pay you a visit to Rainier country if and when you’re feeling up to it. Not sure when that’s likely to be but I am game and eager any time. Let me know of a window if sometime soon seems appropriate and I’ll wander up to the great northwest in search of bigger fish and time with a remarkable fellow.

    Thinking of you and sending our love,

    Sean

    p.s. my Dad asks not infrequently if you need anything up there. Please holler if there’s anything he (or we) can do while you’re in the ‘hood. You’re, frankly, surrounded by Schwaegler’s up there eager to do penance for childhood sins yet unpaid for :) .


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