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.

Dudes in hats

In the midst of cancer treatment, it can be difficult to remember that there is still life to be lived. Sometimes you feel like you’re in freefall, careening from one desperate situation to the next, with little control over where you end up each day. The countless tests and procedures dictate your days, and I’m sure as an adult or teen the situation would feel hopelessly depressing. But for children, especially toddlers - their mandate is simply to just play. They want to keep having fun and learning about their world. The countless hours waiting in clinic aren’t boring to them, they just pull out their toys and get on with the serious business of play.

I thought I’d take Erica up on her offer to post on her blog. Our lives have certainly changed a lot in the past three months and my role has become that of Medicine Man.

Gavin receives a dizzying number of medications now, and we quickly realised that the more of them that we can administer ourselves, the more freedom we would have.

When we’re at home a nurse comes by each day to flush his central line and do any other maintenance tasks that need attention like dressing changes etc. Of course that means we need to be home instead of out in the world enjoying our hospital-free days. We wanted to go away for a night over the Labour Day weekend so I had to learn how to do most of his daily nursing tasks.

It has been a while since I last posted anything, as we’ve been BUSY.

Nana, Pop and Gav at the park

Nana and Pop arrived on the 26th from Australia with a truckload of Vegemite, Violet Crumble and other Aussie delights, plus incredible hand-knitted jumpers for the Bean. They stayed with us for about 10 days and luckily were here to celebrate Gavin’s 2nd birthday with us. Their stay was a bit low-key, as we felt it was important to keep Gavin at home until his counts became good enough to venture out places. Once he was feeling a bit better, we managed to get out to the zoo, the park and other outings.

Good news. Yesterday Gavin passed his second feeding study, and is now cleared to eat certain textures! For the moment we are limited to thin purées and thickened liquids, but we are all ridiculously over the moon about this new development. Both Craig and I had suspected for some weeks that Gavin was capable of swallowing something, but because of the danger of aspiration, couldn’t allow him to try anything at home.

I often ponder the human relationship with food. Our omnivorous diet is astounding when you think about it. We eat pretty much everything out there, and each culture scorns the dietary choices of other tribes. (“You eat horse? Eeeew!” “You eat pork? Barf.” etc.) Who was the first person to have a crack at a lobster or a chili pepper, and think, huh, not bad! Life would be a lot easier as a koala, munching away on eucalypt leaves and never having to stand with the fridge door ajar going, hmmmm, now what do I feel like eating?

Just a quick status update as I don’t have time for a long thoughtful post! We came home from hospital on Friday afternoon after a pretty long week.

The Good: We met with our speech therapist on Thursday and she felt that Gavin’s voice is much stronger, and that whatever mistakes he’s making are just down to age. Although he isn’t the most articulate compared to some of his peers, he’s still communicating with us and hopefully the problems he’s got now will resolve before he turns three. Because of that she didn’t feel that he’ll need later therapy before school. In other good news, our physiotherapist also felt that he’s made great strides and is kind of doing his own physio just by being a toddler, so formal physio is not a complete necessity for him either. Awesome!

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.

Before Gavin was born, Craig and I attended a one-day prenatal class at our birth hospital, in which we learned nothing apart from the fact that we would all most likely be having c-sections. (Incidentally, I did.) We had a little circle time where we all went around and talked about our partners’ attributes that we would like our children to have. I remember inwardly rolling my eyes as each mama and daddy-to-be said things like, “I hope he’s got his father’s kind heart.” “I hope she’s really sweet, just like her mother.” Sweet!? Kind!? I mean, of course you want your child to be sweet and kind, doesn’t that go without saying? Dream big people! I think my response was that I hoped Gavin would be logical, rational, and really good at math like Craig. Also a great swimmer.