Treatment

As the weeks slip by, we are now beginning to live a somewhat normal life, but also to get a glimpse of what the coming months and years will bring medically. Now we watch, wait and maintain. Gavin is officially out of active treatment and back in the care of the neuro-oncology team. It has been an adjustment leaving our friends in BMT and starting Gavin’s maintenance treatment with neuro-onc. There have been many things to consider for his health, many tests to do, and many adjustments to be made.

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.

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.

DAY 2

A few years back, when I was gainfully employed as an ESL teacher at the erstwhile Aspect International language school, my colleagues and I got into a hilarious debate about germs and hygiene in the staff-room. I believe I have mentioned before that both Craig and I err on the lax side when it comes to being germ-conscious. So the items on the table in the staff-room dispute were:

• hand-washing, how often is necessary?
• drink-sharing, if so, with whom?
• soap-sharing, is it okay for a couple/family to share a bar of soap?

And the list went on. As it happens, there were several people present who were serious germophobes and were disgusted by the fact that I happily admitted to washing my hands only after bathroom visits, drinking out of the same glass as most people I know and not having any issues with using the same soap as my husband. There were those amongst us who never held onto escalator railings or subway poles and carried hand-sanitizer in their pockets. I’ve never subscribed to the belief that the world at large is coated with icky germs just lying in wait, ready to pounce. Never, that is, until now.

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!

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.

In order to do this procedure he needed a femoral artery line inserted, back in IGT. Some of you may remember that we haven’t always had the best experiences there. This time, I was convinced that things would go better, and spent 15 minutes chatting with the anesthesiologist ahead of time as to how we could minimize the chances of a negative anesthesia reaction. Unfortunately, as soon as the process was over and done with, and we were out of recovery and upstairs on the ward, Gavin went completely ballistic. He’s just incredibly sensitive to these drugs and his reaction is to scream and thrash for half an hour as it works its way out of his system. I have begged every doctor and nurse in the place to help me resolve this issue, as Gavin has many more generals to go through down the road. Let’s just say there is a lot of buck-passing going on. Both my mother and I were reduced to frustrated tears as we had to restrain Gavin in the bed to prevent his line from being displaced. He only calmed down after getting a shot of morphine, and then a bit later resumed behaving like a normal child.

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.