David 2 Lymphocytes 0

His lymphocyte count remained at zero for the 2nd day in a row.

It is a teeny, tiny shred of hope.

Shortly before starting today’s dressing change, David was finally able to bring his core body temp up to 96.8.  It took 24 hours and it’s still not normal, but it was a small victory, albeit short-lived. After this morning’s dressing change, his temp had fallen to 92 degrees. 8 hours later, it is still only 93 degrees.


Each day will be like this. The gut-wrenching anticipation of what the day will bring. My days don’t seem to have an ending or a beginning. Each day is just a continuation, hour by hour. I may sleep for a couple of hours then I may be awake for 20.

Time is irrelevant.

Except in terms of his comfort, then time is everything. David is on outrageously high amounts of pain meds,all running constantly. Fentanyl,  Versed, Dexmedetomidine,and  Dilaudid, these run continuously in an attempt to keep him comfortable and sedated. He needs to be sedated while intubated lest he self-extubates, again. And he’s in pain. Lots and lots of pain.

These meds are not enough.

He also receives scheduled doses of Methedone and Ativan, one every 3 hours.

These meds are not enough.

He receives no less  that 6 PRN’s approx every 1/2 hour. Fentanyl, Versed, Ativan, Morphine, Ketamine, Dilaudid.

Theses meds are not enough.

If you or I ingested all of these doses in the course of a single day, it would kill us, no doubt about it. His body just chews it up like candy, enough just isn’t enough.

So high is his current need that they decided to try a ‘Propofol holiday’. Tonite he’ll get 12 hours of constant Propofol, increased when needed, additional PRN’s every ten minutes, if needed. The pain meds will be turned down. If they could get through the 12 hours and wean him off the pain meds completely, that would be ideal.

Right now his pain receptors are so overloaded, the pain meds aren’t working. Propofol is used in anesthesia,  so it acts differently than all the drugs he’s currently on. This plan gives his pain center a chance to re-boot. They’ll re-start the pain meds at the end of the 12 hours, hopefully at a more manageable level.

He’s five hours into his propofol holiday.  He’s resting comfortably for the first time in days. So far, so good.

Another tiny shred of hope.

All the doctors come to the re-dressing of the babe. The most important are the Oncology docs – they are the ones who treat the GVHD with a fair amount of regularity. They are the ones who determine his course of treatment.

They gather around inspecting his skin for the tiniest bit of improvement.  Even though his skin is angry red from where the top layer of skin is sloughed off. Even though there are signs of new blisters forming on what little bit of intact skin he still has. Even though it’s only been 2 days since they administered the campath. They uttered words that were music to my ears…..

We are cautiously optimistic.

I will tuck it away and not flash it about, some things are meant to be savored, shared quietly among friends.

Maybe sleep will come a little easier tonite with that wee gem tucked under my pillow…..

Categories: Life | Tags: , , , , , , , , , , , , , , , , , , , | 12 Comments

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12 thoughts on “David 2 Lymphocytes 0

  1. mooney=mc2

    I have thought of you all day. Actually, I dreamed of you both all night too. I can hardly wait for your posts each evening. I think of you constantly. You are so strong. I don’t really have something different to say each night but I want you to know I am here. I am listening, waiting and praying.

    Sleep well with your gem under your pillow tonight!


  2. I was about to put the computer up for the evening when I saw your post. I was almost afraid to read it but I am so, so glad I did. So grateful for a glimmer of positive. Praying that it’s just the first of many. I hope you and your sweet boy get the rest you need to face this monster you’re fighting with renewed energy.

  3. Keep holding on to those tiny bits of hope! I’ve been thinking and praying for you all day! I pray that you get some much needed rest tonight and that tomorrow keeps getting better for you. I’ll be praying.


  4. Amy – I echo the words of Mindy!! I just want you to know that I am here, reading, praying, thinking of you and your beautiful baby!!

  5. SBellour

    You are one brave mama of a very brave boy…We haven’t met, but I have been following your journey and wanted to let you know that I am thinking of your family and sending healing energy from my faraway corner of the word. Wishing you much-needed rest and a good day tomorrow.


  6. Amy, I have no words – hang on in there.

  7. May those teeny, tiny shreds of hope multiply and snowball. I’m already waiting for your next update. You are in my thoughts.


  8. Luann

    Some things are so hard to understand. This is one of them. Things are not as they ought to be, and so we grieve. And we pray. And we trust that somewhere, in a dimension higher than our own, there is a reason for this suffering. A reward for those who endure. A light at the end of the darkness.

  9. A Roselyn

    I just wanted to let you know that we are praying for your boy and yourself.

  10. I’m hoping and wishing that the shreds of hope you received today snowball into lots and lots of hope and recovery. Hang in there, Amy. We are all rooting for David and your family!

    Veronica Samuels 🙂

  11. i’ve got typos, i couldn’t even view the keys of my laptop. my eyes are wet, it clouded my views. but my heart is all out for you my dear. you are a strong woman, and being a mother at that, you have been into ups and downs of life, of death and living. i bet you’ve grown numb to the pressures each lab results flashed of you, or in each talk to the doctors, or the sympathetic eyes of the people surrounding you. i cant say ” hang in there “, though we all wanted to, coz we are feeling your pain. how much painful these loads are we have no right to say we felt the same magnitude as you.
    you are a mother, you sons are your life too. you will always wished to have them grow, graduate, take up a girlfriend, get married. but sometimes you just have to leave a piece of your heart with them…
    such an odd life you have, moving, and it makes us cling to our loved ones, to cherish life, to never take for granted everything that holds dear.
    thank you for your posts. you just don’t know you are also helping us realize things from your perspective.
    i will pray for David. we will be.

  12. I’m so glad you joined the special needs blog hop. Not just for you to get the support, but for us to get to know you and your story. Just in time, too. My daughter and I are about to light our candles, which we light every friday night, and I get my 30 seconds of quiet to shout (in my head) all my hopes and prayers to the forces of the universe. I’ll be thinking of you during these 30 seconds 🙂

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