Wednesday, January 26, 2011

How to Live When Your Child Gets a BMT

Wash, Wash, Wash.

Preparing to come to the hospital:
  • wash all clothes
  • seal all items in plastic bags (Ziploc), i.e. clothes, pillows, stuffed animals in
  • no toothbrush or opened toiletries
The inside of his suitcase looked so neat and tidy, but looked like it was packed by someone with serious OCD.

Upon arrival:
  • scrub for 2 minutes up to our elbows in the ante room (enclosed entryway with a sink and storage cupboards)
  • William given a sterile bath. Think sponge bath, but with heated, sterilized, bottled water and special antiseptic soap.
  • Put on clean, sanitized clothing from home.
  • Everything we brought had to be wiped down with sanitizing wipes before entering the room. The wipes are so powerful that rubber gloves must be donned.
Daily maintenance:
  • William may not leave the room.
  • Hands must be washed every time upon entering the room.
  • 2 minute scrub to elbows only if you go outside the hospital.
  • Only William can eat and drink in the room. I have to stand in the ante room to eat or drink. This puts a cramp in any snacking urges. And the outside door is a glass door that looks right at the nurses station.
  • No outside food permitted in the room, i.e. restaurant, homemade.
  • Any food not prepared in the hospital must be individually wrapped and sealed.
  • Once the seal is broken, it must be consumed in 2 hours or thrown away.
  • William's food is prepared in a special neutropenic kitchen.
  • William is given a sterile bath each day.
  • He he must swish three times back to back, 4 times a day with a special solution to clean his mouth.
  • Brush his teeth daily with the disposable sponge on a stick toothbrushes.
  • Bed linens are changed daily. The linens for the BMT kids are washed and stored differently to make sure they are very, very clean.
  • No toilet paper is used. Sterile gauze pads may be dipped in sterile water and/or sterile soap solution if needed.
  • Only William may use his bathroom.
  • The shower may not be turned on since the pipes in the hospital are old.
  • Only bottled water is consumed.
I'm sure I've forgotten some things. It's serious mental exercise just adjusting to how to live in this environment with all of the necessary precautions and restrictions. But it's all worth it.

William is on day 2 of chemo. He is receiving Busulfan for 5 days and then Melphalan for 1 day. Then 24 hours after that . . . Transplant (Monday). So far he is tolerating it quite well and continues to eat. The doctors told me this morning that side effects can be slightly delayed, but it's a good sign he's still eating. We are told the Melphalan won't be so pleasant. William is pre-medicated before the Busulfan with Ativan for nausea and possible seizures. It makes him a bit loopy and dizzy, but in an entertaining way. Yesterday he asked why I had two heads. He laughed. That's good.

Soon to come: pictures and perhaps a video tour.


  1. Wow! That sounds like a lot to try to remember. Good thing you have two heads. That should come in real handy! Our kids sometimes forget to bless the food at meal time prayers but they never forget to bless William. We love you guys. Hang in there.
    Love, The Lamb Family

  2. We love you Julie and family. You are in our thoughts and prayers always. Thank you for posting. We are so happy to know how William is doing.
    Love, Peter and Nicole

  3. Your hospital experience gives clean a whole new meaning. Whatever it takes to help him bet better sooner. But it certainly adds to the list of "things we only have to do once in a lifetime!"

    BTW-Here comes grandma! And grandpa!

  4. Thanks for keeping us posted, Julie. There isn't a day that goes by that I don't think of William. lots of love from The Swansons

  5. Just another battle in the war against neuroblastoma. William will win this one too.

  6. Good luck getting used to that fun lifestyle. My father-in-law had a stem cell transplant 1 1/2 years ago, so I remember the restrictions well, though I only got to visit a few times. He couldn't have any fresh fruits or vegetables too... I remember them calling his first day of the transplant, his "new birthday."
    Good luck William, you're in our thoughts and prayers.