A Bean’s Life

We’ve shed more tears today. More than yesterday, more than Diagnosis Day. Gavin went back on the oscillator around 1am this morning.

It is excruciatingly heart-wrenching to be so close to being free of ventilators only to go all the way back to where we were after the biopsy.

Gav has not been muscle relaxed (pharmaceutically paralysed) like he was last time on the oscillator so he has been able to express his frustration more. The breathing tube is below his vocal chords so he can’t make sounds and there’s nothing more distressing than seeing your child silently cry.

The hardest part of today was the discussion we had with his doctors when they told us that if he doesn’t improve in the next few days that they want to try Etanercept. The drug is extremely risky with a low success rate, but it may be our only shot.

We need the steroids to work. They must.

We all have to believe in our little warrior and his invincibility. He’s going to stand up and fight for his lungs and prove all the doctors wrong once again.

By my reckoning Gavin has had 9 separate operations and procedures in less than 6 months.  There may have been more, I’ll have to check with Erica.

He’s also had 6 rounds of chemotherapy, 3 MRIs, at least 6 CT scans (I lost count), 6 GFR kidney tests, 3 ECGs, 6 echocardiagrams, dozens of X-Rays, and innumerable needles.

He has been nauseated for weeks at a time and as I write this he hasn’t had any food for 10 days – all his nutritional needs have been met through TPN. Oh, and he’s currently on oxygen 24×7.

And yet every morning the first thing he says is, “Dadda, wake up. Let’s play!”

This kid is unstoppable. Inspirational. He’s my hero.

We got some very, very good news today from the stroke team! They feel that Gavin has been on blood thinners long enough to fully resolve the blood clot in his brain.  We knew from the last CT scan that the clot had almost entirely disappeared, but they wanted him to remain on Enoxaparin for another month as a preventative.  The thrombosis team will keep an eye on him in future MRIs, but hopefully for now he should be in the clear.  This also means that Craig is now cleared from having to jab him in the legs morning and night.  ONE thing off the table, thank you!

Of course, I was a little bit disconcerted when a member of stroke research was asking me about “Gavin’s stroke.” Meanwhile, I’m thinking, he didn’t have a stroke. But apparently he might have.  Who knew?  My grandmother informs us that she had a “mini-stroke” awhile back which is why she’s been on coumadin for the last thirty years.  Again, huh? It’s all far too mysterious for me.  I just know that Gavin didn’t suffer any outward signs of having had a stroke, so hurrah for no more blood-thinners!!

Once again though, the good news is always followed by some typically bad news.

Gavin and I had an early start down in the dialysis unit and played hard as I tried to keep him entertained while plugged into the machine.  We played Recycling Truck, Max and Ruby, Little People, Monkey Does Stuff, and Blankie Peek-a-Boo for a couple of hours.  Our lovely friend Amanda came to visit bringing a trilingual Dragon as a birthday gift for the Bean.  Gavin enjoyed opening up another prezzie and I tried to convince him to say “el circulo” like the dragon but he wasn’t quite up for it yet.  Unfortunately, Gavin accidentally ripped off the face tape of his NG tube during a heated round of Peek-a-Boo and went a bit nuts, but luckily did not lose the tube due to my whip-like reflexes.  Amanda then went in search of berry smoothies to tempt Gavin’s tummy, and returned triumphant.  Thanks Amanda, for helping us relieve the boredom of four tethered hours.

Of course the Bean then spotted one of my reserve birthday gifts and insisted on opening it – a play-dough kit I’d picked up for him, quite a winner but hard to keep play-dough bits out of various sterile lines.  Argh.  We were finally finished, returned upstairs and Bubby came to play for awhile.  She and Gavin covered his bed in finger-paints and inky stamps, vanilla yoghurt and smoothie.  Finally, the little man passed out in sheer exhaustion at 2:30.

Somehow, I knew that the harvest wasn’t successful, I’m not sure how.  When the doctor came to tell us that it wasn’t I was disappointed but not surprised.  This means that we have to return to the dialysis unit tomorrow for another session.  I’m not sure just how much more entertainment I have in my bag of tricks!  I can only hope that somehow, miraculously, we manage to get enough tomorrow, but for now it doesn’t look good.

The plan is apparently to start chemo as soon as the harvest is done – so unfortunately we’ll be in for awhile.  We’d love to see any friends that can come by over the next few days as Gavin’s counts are good.  Of course, it depends if we’re off the isolation ward so let me know before you come!

Just a quick hello for the most recent treatment developments.  We returned to hospital this week for a procedure which is called a stem-cell harvest. (Apheresis) Essentially, Gavin is given a drug that forces his bone-marrow to produce so many new stem-cells that they are forced into his bloodstream, and are then collected from there on a type of dialysis machine. (more…)

Just flying by to do quick update.  Tonight is the last night we are running chemo and it’s starting to catch up to the little man.

Yesterday he was feeling quite alright, still very playful and we spent most of the day walking Monkey around in a pink dolly stroller Gavin picked up in the playroom, dragging his IV pole behind us and charming the pants off of everyone. Bubby and Da (Grandma and Grandad) came to visit and so we had a lot of playtime with them, and were busy as only a toddler can be.  Gavin painted some quite wonderful abstract expressionist pieces and we hung them in our room.

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