Day -10

 

Leaving for BMT (with his medical kit, of course).

Leaving for BMT (with his medical kit, of course).

We have made our return to the hospital, and this time, we managed to be gone until the morning we were due back, which is not the usual for us! It was hard to return after such a short and lovely time at home, but once here, we got down to the business of BMT.

We have been talking about Caemon about life beyond the double doors quite a bit lately. You see, the children’s oncology unit is a pair of hallways that both end at a set of double doors. Beyond the set of double doors is the bone marrow transplant unit. Caemon has known about the double doors for some time but had never seen behind them until just before we left when he had his first glimpse. He knew there were things to look forward to here, so once he moved past the difficulty of leaving home again, he began to anticipate his new experience behind the double doors. He knows it is special here, and so far, we have worked to make it even more so by putting up special decorations (many lights and even large tree decals on the walls to give the feel of a forest), giving him some special gifts, and helping him become acquainted with the new rules here (moms can’t eat in the room, a bath must be had every day, no more disconnecting from the IV pole or leaving the room, etc.). I would like to share more about this when I am less tired, but today has been a series of adjustments for us all, and I imagine we will continue to learn how to live life beyond these double doors.

 

Playing with a special gift.

Playing with a special gift.

Tonight, Caemon is receiving the first of his conditioning chemotherapies. He has already had one dose along with the drug Attivan, which is meant to prevent seizures (one of the side effects of this particular chemotherapy), but which can cause children to either become relaxed and happy or out of their minds and a bit wild. We were fortunate to see the first reaction and not the second tonight, so we are pleased about this. We all need our rest.

Because this is the first day of Caemon’s chemotherapy, or “conditioning,” it is called “Day -10.” We are counting down to Day Zero, which will be the date of transplant. We are told this will be December 20th (on the eve of the Winter Solstice). Beyond the transplant date, we will count days as +1, +2, and so on. Such is the way beyond the double doors. As far as we know, our donor is having her surgery to harvest her bone marrow this week. I don’t know the exact day, but my best guess is that it will be the twelfth. Those cells will then be frozen in anticipation of Caemon’s transplant on the 20th.

So here we go. We’re on our way up the mountain. More to come later.

Advertisements

17 thoughts on “Day -10

  1. Helen

    Glad you got to go home before your big “mountain climbing” adventure. Praying it all goes well and that Caemon (and moms) will remain as strong as you have been all this time. Will be continuing to send love and light to you all!

    Reply
  2. Olive

    I’m thinking of you all the time. I’ve been listening to Vienna Teng’s “Atheist Christmas Carol” this week and last in honor of Caemon. The line, “you are safe here, you know” reminds me of the BMT unit and how you’ve talked about the hospital as a healing place. Much love and light on these dark and hopeful December days.

    Reply
  3. roger126

    The double doors: Keep in mind that a door is an opening, not the barricade used to close it. It is an In and an Out.
    And…Donovan (I think!?) said, “first there is no mountain, then there is, there is no mountain” or some such. Maybe this applies.
    Mountaineering-wise: This is First Pitch. Put in plenty of protection, keep the stockpiles full, pace yourselves, rest often and watch the weather.

    Reply
  4. Adam and Lauren

    We are thinking of you and still lighting candles. This is a time of great transformation and soon the light will begin to grow.

    Reply
  5. knightlizard

    It must help to be aligned with the solstice. Lighter days are coming!

    With cats and kids we can’t keep candles lit constantly, so instead I am thinking of you whenever we turn on the tree, the fireplace, or even the house lights sometimes. (Perhaps that’s why Fiona insists on turning the light-switches she can reach on and off repeatedly?)

    Reply

Thank you for your replies. We appreciate every comment.

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s