Monday May 3
There is an infection in Nick’s central venous catheter (CVC, central line) so it was removed, and now he is back to a femoral line. That means his blood work no longer can be taken from the CVC. It means more pokes with needles. But his veins are hiding and damaged from chemo so the staff digs with a needle to find them.
I am fit to be tied and it takes all of my strength to be sane today. I can’t believe that patients used to endure the harsh treatment through IVs in smaller veins in the arms. Chemotherapy eats tissue and the fragile veins would blow and then the IVs would have to be restarted. Poke, poke, poke.
The result from Nicholas’ bone marrow biopsy is that his bone marrow is dead. There is no activity – no good cells or bad cells.
His expression grave, Dr. Kent our main oncologist told us, “It’s possible that the chemotherapy has over achieved and the environment that houses his bone marrow (stroma – the garden inside the bones where the bone marrow grows) has been damaged.”
Nicholas received enough noxious chemicals to destroy his bone marrow. Just like what poor Kendra is going through. After the infected bone marrow is killed off then they can transplant the donor marrow, a healthy new blood factory.
But Nicholas isn’t having a bone marrow transplant.
I don’t know if a stroma can repair itself and no one is speculating on the outcome.
It was 100 days since diagnosis and today is 50 days since starting the last round of chemo and still there are no blood counts. Nick has no natural protection from infection. He is a sponge and every freakin’ germ, virus or bacteria on this godforsaken alien planet are looking for a place to land.
And where do you think the craziest infections hang out? In the freakin’ hospital!
A group called Child Life is in daily to visit Nick, to coax him into interaction. My usually outgoing son is withdrawn. He lies quietly with his eyes closed, feigning sleep so people go away and leave him alone.
The fevers are fierce and slowly consuming what is left of his emaciated body. I leave the room to cry buckets of tears. Sometimes they fall down my cheeks before I can make it from the room.
His Dad flew in for a visit and to please him Nick ate a few licorice Nibs. The House gave us two tickets to see a Rod Stewart concert. It would have been great, but under the circumstances it was just OK.
Gerry E. came back to Vancouver again on April 30th and Nick smiled for his friend.
It turns out the infection is not in the CVC. It never was the problem because the fevers rage on.
“Where does it hurt?” They ask him.
“Everywhere. I just feel awful.” It hurts me to look at him.
I hear the discussions as the doctors visit Nick and the nurses rotate through. Everyone looks perplexed.
They say the pain isn’t localized because he doesn’t have a White Blood Count (WBC).
“But, we’re not sure.”
I ask, “If his body is depleted of a WBC or too sick to recognize an infection, then why the fevers?”
Fevers are a base line response to infection – it is the first thing your body does to fight an infection, and send warrior cells to do battle.
But he doesn’t have any warrior cells.
I hate the vague answers I get. There is something very weird going on and I’m terrified.
The buzzing is often in my ears. I’m getting used to waking up in the morning with crusted eyes from sniffling and snuffling through my tears before I sleep.
Sunday May 9, 1999
Happy freakin’ Mother’s Day.
We just had the second night of the drug Ampho Terracin. It is 10AM and Nick has a fever of 39C.
Day 54 since the last round of chemotherapy.
104 days since diagnosis.
The nickname for this anti-fungal drug is “Shake and Bake” or “Ampho Terrible.”
We are very lucky that Nicholas does not have a reaction to it. I’ve heard of children shaking crazily, almost convulsing and having to be held down on the bed. Then having wicked sweats that soak the bed.
I’ve watched the Ampho Terrible appear on Nick’s orders for three days prior to him actually receiving it. I guess someone figures that Nick might have a fungal infection. Go figure, he hasn’t had an immune system for weeks. He is a piece of Velcro for any bacteria, virus etc. on this planet to attach to.
Some action needed to be taken. When I finally get to talk to a professional I hear a sense of loss, and no one has any answers.