Wednesday, 7 May 2014

What next

He's in hospital, he's out.

He gets a fever, he's back in.

The fever subsides. But while he's back for a routine check-up, it returns with a fury.

This is war.

Our team mobilizes. Trish goes to pack her bags for another week. I agonize while trying to put together another day at work, told over and over there's nothing I can do.

Every test he's had has shown that he has beaten his leukemia. From the very first round of chemotherapy to the latest tests on his bone marrow, all indications are that the bad cells are gone and his blood transplant has taken hold perfectly.

But the fear every time he spikes a fever, every time he shows even the most minor symptom makes us squirm.

Yesterday's re-admission to hospital wasn't just about fever. The doctor noticed enlarged lymph nodes and spleen. At first he thought it was mono - technically known as Epstein-Barr Virus (EBV). I was told it was probably no big deal.

Today he thinks it's post-transplant lymphoproliferative disorder, or PTLD. That's because Dominic's white blood cell count is high.

If you want to read up on PTLD, go to http://www.cancer.ca/en/cancer-information/cancer-type/non-hodgkin-lymphoma/pathology-and-staging/types-of-nhl/post-transplant-lymphoproliferative-disorder/?region=on. The gist of it is that it's rare and is related to EBV in patients who have had a transplant of any kind.

Extra white blood cells used to be good news when he was in recovery from chemotherapy. Now the fear is that they're cancerous again.

We won't find out for sure until the weekend.

We have to be brave and march on.

4 comments:

  1. Thanks for the link to the PTLD info. It sounds interesting. The EBV does some weird things to people. Hope continues that it is the bumpy road of recovery and soon all will be well again.

    Emotionally, I can only imagine you are feeling the exhaustion of these sudden ups and downs, and I bet hard to let down your guard. I hope you can join Dom and Trish soon. Even when there is nothing you can do, it does bring peace to be there. I get it. :-) You and Trish are both caregivers. Honour it. There is more to "doing something" that being the Dr.

    You will be there soon and Trish and Dom will have big smiles for you.

    You are brave and courageous. This is a quote that helped me often in the past:
    "Courage does not always roar. Sometimes it is the quiet voice at the end of the day, saying,"I will try again tomorrow." - Mary Anne Radmacher

    Hugs to all,


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  2. One more thing - more than once I sat at my desk at work, staring at the computer, and cried. No shame in that. Tears heal - let them flow!

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  3. Crappy that he's back in, but all our love and thoughts are with you all as you and he continue this fight. oxxoxoxxoxo Betty and Al

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  4. My heart dropped when I opened my email to see this. I'm so sorry Dom and your family are struggling with this after all you have been through already. If its one thing we know, Dom's a trooper and is fighting this with all he has. You are in our family's hearts as always.

    Wishing you all the very best <3

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