Home sweet Home

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We’re home.

Bede is seemingly over the infection and we have been swapped to oral antibiotics. Whatever remnants of the infection are left are not taking such a toll on him anymore. The hospital comes out to check on him each day and he seems to be pretty much back to himself.

We head back to the hospital on Friday for surgery. Bede will have his Broviac line installed. A Broviac line is a line that hangs outside his body and the doctors use it to administer the chemotherapy drugs to Bede and take blood from him when they need tests. It’s meant to cause less distress than constantly being needled. He will also have a lumbar puncture.

We start the chemo after the surgery.

The plan has slightly changed and we are rescanning to see if the chemo is working after 6 weeks instead of the usual 3 months. The cancer got away from them when they waited 3 months with the last baby they saw like Bede.
We need to be ready to bail quickly and get him on to the more intense, hard core, ass kicking chemo quickly.

We spoke to the brain tumor specialist while we were in hospital and finally got more of an idea of just how rare this disease is in a baby this small.
In his time at PMH he has seen one other baby and in all his time over seas he has seen one other baby with disease like this. So Bede is his third baby. Another doctor told us she thinks there has been something like 6 reported cases ever. It is rare.
The last 2 babies our doctor saw both died very young but even he says there is always hope. The outcome is really dependant on how the individual baby responds to the treatment. You never know until you give it a shot. We just really need to pray and focus on bede responding well.

For all these reasons I am sad to start chemo. Once the chemo starts I feel like there is no turning back and I’m scared. I’m scared that I wont be able to offer Bede enough comfort to help soothe him when the drugs make him feel terrible.

My confidence falters but my faith does not. My faith is firm that whatever is right for Bede is what will eventuate.

I’m also eager to get started. To sink my teeth into this. To give Bede his chance to shine. To prove the naysayers wrong. To dominate cancer. To put one foot in front of the other and carry Bede through this hell and come out no doubt battered but standing tall on the other side.

We’re not aiming for perfection, there is no cure for Bede. But I think in some beautifully imperfect way he may have a few more surprises in him yet.

Bede remains full to the brim of strength and fortitude. He is calm and gentle and strong. He is relaxed and his usual content self. He is happy.

6 thoughts on “Home sweet Home

  1. Surf the waves or surf the clouds, either way right now, as this photo shows, you are our ‘king of the point’.

    • Dear Parents and family, Please pray for a miracle healing for Bede. God is great !! I am sure he feels your pain. Heavenly father please clense Bede’s body from this infection and bring him back his bodily vigour and bring it back to health. thank you lord.

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