100% Engraftment — Still a Long Ways To Go

Dear Family & Friends,

We received terrific news on Friday.  Barry is fully engrafted, meaning his (angel) donor’s stem cells have taken over and he can now  begin to recover.   This is a milestone that he never reached on his first transplant and it is the reason he was given a tougher pre-transplant regimen this time.  David Miklos, who came up to the ITA to celebrate with us within 3 minutes of getting the news said that maybe the fevers he was having were engraftment and not infection.  We’ll never know.  There is so much of this that is a mystery to us, and unfortunately, still a mystery to the doctors as well.

So while this is wonderful news, there are many obstacles ahead of us. Barry’s liver function is impaired.  They have discontinued some medications to see if they could be the cause, but if it doesn’t get better, he will have a liver biopsy.  This could be graft vs. host disease and no one seems really freaked about it, so I will not be freaked about it.  The doctor who gave us the engraftment news (he popped his head into the room we were in and said “Barry Willdorf – 100% engrafted!) said that prednisone might become Barry’s new best friend.

So there’s graft vs. host (GVHD) both acute and chronic to perhaps endure and hopefully successfully treat (can be fatal). There’s the underlying cancer that no one really believes is ever completely gone, but with a new blood supply, now can be fought.  There’s chance of relapse (50/50 within the first year post-transplant).  There’s the risk of infection for a long time.  Immune systems don’t bounce back easily.  It takes one to two years and there’s no test to let you know when it’s functioning again.

And Barry’s still feeling lousy.  He’s very weak, fatigued, having some intestinal problems, still some low-grade fevers, headaches, etc.  Yesterday we spent 8 hours at the ITA while he got two units of blood.  Many of you have asked what happens when we go to the ITA (Infusion Treatment Area) at the Cancer Center.

1.  We wait for his appointment

2.  He gets weighed and “roomed” (either in a chair in a big room with other patients, all BMT or Hematology, or in a private room with a bed if he’s feeling poorly or has an active infection)

3.  His nurse takes blood through his PICC line (his central venous catheter was pulled when he was in the hospital in case it was causing the infection)

4.  They start a liter of fluids.  Barry has to have 3 liters/day of fluids to counteract the cyclosporine immunosuppresant he’s taking and he might as well get one while we’re there

5.  He often gets one or two bags of magnesium.

6.  After about an hour we get the blood results, CBC, differential (BMT) and chemistries and maybe some other treatments, like yesterday’s red blood.

7.  We see a PA, usually the same one, and he gets examined.

8.  The nurse goes over all of his medications and dosages with me

9.  Sometimes we see a BMT doctor, the attending, or Wes Brown comes over to examine him and chat with us

I read a lot while he’s there, sometimes listen to music if the room is too noisy, and often take the time to go to the grocery store and do errands.  I only leave if there’s nothing happening, if we’re not waiting to see someone or for some significant results, because those would definitely occur while I’m gone.

All of the doctors are very reassuring about Barry’s symptoms.  They keep saying “After all you’ve been through, with two transplants, two courses of Campath, chemo, radiation, etc., of course you feel lousy.”

So is this transplant harder or easier than the last?  I think harder.  Even though Barry’s hospitalizations haven’t been life-threatening like the last time, this is the second-time around, and the risks are higher.  (David Miklos also said the other day that very few people get 100% engraftment on a second transplant — glad he didn’t tell us that before.)  It’s completely exhausting and also a very isolating experience.  We’re living in a beautiful apartment complex, with nice places to walk, a pool, and a hot tub and the weather has been glorious, as seen from our closed windows.  I guess I’m sounding whiney.

In reality, we are very encouraged.  While before Friday we were guardedly optimistic, now I would say that we are cautiously optimistic.  Not sure if that explains it but it’s the best I can do.

With much love,

Bonnie

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2 Responses to 100% Engraftment — Still a Long Ways To Go

  1. Barbara Dwyer says:

    hello, you darlins. I know you’ve gotten my emails so I won’t carry on except to say that this is wonderful news in the scheme of things. Baruch ata Adonai; May the Goddess smile on you, and even Dominus Vobiscum. All blessings are wonderful

    I’m looking for your Palo Alto address so that I can send you a card. If you’re up for a visitor this week, I’d love to see one or both of you, One day I need to go to SF to take care of toilets, dryers that don’t start, and dishwashers with stalled stinky water (how do these guys call themselves”engineers)?

    I hope you got out to feel the sun on your faces today (Saturday). Bonnie, touch base with me, OK? Please send your Stanford address in case I can’t find. Let me know if you need anything brought up from SF; I’d be glad to pick up a key (or meet one of the kids there) and bring you back what you need.
    Love,
    Barbara

  2. Barbara Joan Tiger Bass says:

    Hi there. Finally got here, to the site, to read the latest update. Bravo. I hope the liver, the fevers, and the general malaise are all under control and you’re both feeling strong and hopeful.

    Bonnie, you’re such a good writer. Not AT ALL whiney, fyi, and even if you were, it would both make sense and probably add a little comic relief. We often forget to be exceedingly grateful and a little complaining every now and then reminds us.

    All’s well on our end. Especially since we got to see Silas last Friday. OY!!! What a jewel, deliciousness, doll baby. And it’s also fun to see Julia and Nick so completely happy and relaxed. Reminds me of the joy of that era in my/Elijah’s life and how the marvel of it continues.

    He’s at Interlochen Arts Camp for 3 weeks (I only wish I could peek in at him to see how he’s liking it!). We’re relaxing in Ashland for a few days of theater and then home to the quiet of a house sans children and a short, sweet period of UNINTERRUPTED writing/revising for me.

    I’m thinking of you often and sending love, good cheer, and the hopes that soon you’ll be out and about.

    xoxoBarbara Joan (and Jeff too)

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