Today is “day +46” since David had his bone marrow transplant.
In the world of bone marrow transplants, it’s fair to say that David is doing okay. If you would’ve asked me a week and a half ago how David was doing, I likely would’ve said, “He’s doing great. Yes, he’s still taking six medications a day, and, yes, he still has a port in his chest, but when it comes to his blood levels, they’re looking good. For this, we are very thankful!”
Today, though? David is doing okay (not great), because on day +37 we noticed a change in David’s skin. He had a red, raised rash on different parts of his body. Ultimately, the doctors confirmed that what David has is graft versus host disease of the skin.
GVHD (graft versus host disease) is a serious complication that can occur when you’ve had a bone marrow transplant. Essentially, it’s when the bone marrow donor’s cells start to attack their host.
David is the host in this case. 🙁
The doctors are keeping a close eye on David, and his medications have been increased. We’re making the trip to the Children’s Hospital in Chicago twice a week, and we’re dealing with this one day at a time.
Graft versus host disease can attack a person from the inside, too. It can affect the liver and the gut, so we have to keep a close eye on David and watch for other symptoms that can signal that the GVHD is elsewhere in his body.
For me personally, going through all of this is depressing and scary. I already knew GVHD was serious and that it could happen. But when it did happen and I started googling late at night…
Oh, I shouldn’t have done that.
But I did.
Looking at the bright side, I’m thankful that God is in control, and He’s blessed us with many wonderful family members, friends, and even people we don’t yet know who pray regularly for David. I know that prayer works and makes a difference.
So that’s where things are at this point. I’ll try to write again in a few days and not take such a long break in-between updates. 😉
For those of you who’d like a little more in-depth information about what life has been like for David the past 20+ days, here’s that update:
Day +22: David had a clinic visit in the hospital’s infusion center. At first, he was very uncooperative, and this was hard to handle because he’d been doing so well since he was discharged on day +19. It was like as soon as he realized that he was about to step into a hospital room, he stopped in his tracks and wouldn’t go in. It took awhile before we finally got him to agree to go into the room and have blood drawn for labs. He also ended up having a dressing and cap change on his PICC line. Overall, David’s labs are good, and he’s doing exceptionally well.
*He keeps asking why his hair is gone on an almost daily basis. I explain over and over that it’s because of the chemotherapy drug, Cytoxan, that his hair has fallen out. I reassure him that it will grow back. David notices that “Caillou is bald,” but I’m not sure if this makes him feel better or not.
Day +23: Good day. Grandma and Aunt Sarah visit us at the Ronald McDonald House where we’ve been living since David was discharged from the hospital.
Day +24 and +25: David continues to do well and take him meds. He’s on eleven doses of medication a day.
Day +26: David has severe stomach pain and diarrhea. The doctors are concerned that he may have graft versus host disease of the gut or an infection. We make a visit to the clinic where they draw blood for labs and get samples/swabs for other tests. The diarrhea lasts through the entire day but is gone the next day. David’s white blood cell count and absolute neutrophil count are elevated which signal to us that David’s body is fighting an infection.
Day +27 and +28: The stomach issues are over, and he has a couple good days.
Day +29: David has a clinic visit and is doing so well that the doctor thinks it’s okay to start slowly weaning David off of PrednisoLone, the steroid he’s been on. It’s the steroid that I hate because of all the side effects that come along with it. There’s a drastic change that happens to a person physically when they’re on this steroid. Then there’s the mood swings, anger, increased appetite…oh, it’s bad.
I realize that the steroid is necessary, but I’m ecstatic to start weaning him off.
Day +30 to +36: The days are good, and David is doing well. In fact, David is doing so well that the doctor has David’s nurse remove the PICC line in his arm, and she clears him to leave the Ronald McDonald House and go home!
Day +37: I feel like a bomb explodes in my life again. The moment that I lay eyes on David this morning, I can tell that his skin doesn’t look quite right. He has a rash, and it’s spreading. I call the hospital, and they want David to be seen that afternoon. The doctor prescribes a steroid cream for his rash, and the graft versus host of the skin continues to spread over the weekend.
Day +38: The GVHD is worse, and now it’s itchy, too.
Day +39: The GVHD continues to spread and bother David. 🙁
Day +40: David has a clinic appointment, and the doctor confirms that the rash is indeed GVHD. She doesn’t want to put David through a skin biopsy, because she knows that at this point there’s no real need for it. This makes my heart glad, because I don’t want David to have to go through that painful little procedure.
In order to try to stop the GVHD, David is given a dose of IV steroids in the infusion center. This day, he also has a 2-hour infusion of Pentamidine to prevent pneumonia. His oral dose of steroids is tripled. 🙁
Ruben and I continue to apply steroid cream to David’s body twice a day.
Day +41 to +46: The GVHD gets worse but then starts to look better in some areas. Today (day +46), it looks a lot better. Praise the Lord! We’re supposed to visit the clinic for an appointment in the morning, but because of dangerous weather conditions, I’m going to call and reschedule for Tuesday.
More to come. I’m planning on sharing updates until David reaches his day +100 milestone.
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