Our Thursday discharge was the least stressful one ever, we actually did not need to make a trip to pharmacy for the first time (or so I thought) and didn’t need to return to clinic for blood-work in our three day vacation. As soon as we got home Gavin got in play mode and said hello to the toys. The house was sparkling due to our cleaner’s hard work, and we managed to mess it up in about 10 minutes with a stuff explosion everywhere.

This is a weird thought. If a blood transfusion can make a completely ill person feel totally peppy, what would it do for a person who is well? I would google it but I really can’t be bothered. When I got to hospital Gavin was receiving yet another transfusion as his haemoglobin counts were down. (Platelets up though!) After the transfusion he was a ball of energy for the rest of the day. It was quite amazing to see.

I wish I could come up with a better metaphor than a roller-coaster, but am too tired for that and anyway it’s an apt description of today. There were ups, there were downs.

Began the morning with our daily platelet transfusion. Despite having a great WBC count, Gavin still can’t hold onto his platelets. Slightly worrying, but perhaps tomorrow a shift will happen. We knew that we were heading down for the GFR for 9:30 and so expected IV team to arrive an hour or so before. Naturally, they arrived at the same time as Gavin’s French toast, so we sent them away and tried to get him to eat some after a liberal dousing in maple syrup. He ate almost a half of a piece.

Gavin reached engraftment today, which meant that we could leave the room for the first time in 11 days! Yes, it took exactly the same time as last time, which was slightly strange, but a relief to escape and go for a walk.

We went for a walk in the halls and got to visit with Da outside in the lounge. Gavin got pushed around in a toy car, (yes, trailed by IV stand, rather awkward) and stood up for more than an hour playing. The stamina of this child amazes me.

The blog title today refers to Gavin’s white blood cell count. This is not much, certainly not normal, but it means that he’s on the way up. It means that we are on track for getting out of hospital for a couple of days later in the week, and that is my sole objective.

It has been a hard week in many ways and I’ve been avoiding writing. I try not to write if my thoughts are too dark, I don’t want to give life to the negative thinking that sometimes swirls in my subconscious, and it’s much harder to keep those thoughts at bay if I am tired or hurt. Another reason that I’ve been avoiding the blog is that I’ve had tendonitis in my forearm all week, which seems to have developed from carrying an especially large bag of laundry around. This has made the most mundane tasks acutely painful, everything from brushing teeth to holding coffee to changing a diaper sent a shooting pain into my wrist and hand. Luckily, acupuncture and painkillers seem to be helping and I think it’s on its way out the door. I am not good at managing pain, certainly no one has ever called me the stoic type. The timing has just been so frustrating, especially when Gavin needs me so much right now and I’ve been having a hard time caring for him properly. He feels sorry for me too, my little sweetheart, and has been commenting, “poor mama, sore arm.”

I took Gavin to his first Rainbow Songs class when he was four months old. Some terrible cynics may believe that it’s a waste of time to take small babies to music class when, for the most part, they lie there trying to eat their hands while their mums act foolish for their benefit. To those cynics I say, you’re wrong. Although Gavin couldn’t even sit up on his own he was enraptured by music class. He became so animated each week, and loved the part when we pulled out a bag of maracas and tambourines. As a younger baby he wailed in distress when it was time for the instruments to go away. As he got older, he helped distribute the instruments and put them away. At a certain point, I decided we should take a break from Rainbow Songs because he was going through such an inquisitive phase, he couldn’t sit in the circle but insisted on wandering the room rummaging through people’s bags. I would always catch him holding someone’s wallet or trying to open the door to get out.

Far too tired to come up with anything snappy tonight, so am opting for a bullet list of the day’s events:

• Gavin ordered French toast for breakfast and had one bite
• In morning rounds the docs and company were all in agreement that Gavin is doing very well this round, so far
• Gavin’s counts have now gone quite low, but he was transfused for platelets yesterday so is alright for the moment
• He was not quite as energetic today as he was yesterday, but still very playful and even did some exercises
• Played with Bubby for a couple of hours straight, but was a little bit crankypants with his favourite lady
• Although clearly very tired, flatly refused to nap, I was in bed with him half-asleep for more than two hours
• Because of no-nap was quite irritable
• Perked up when Daddy arrived and joked around with Mum and Dad for awhile, getting into tickle fights and being silly
• Obviously rough-housing not so good at moment because had a giant barf the moment I left for the evening
• I went back to help Daddy clean everything up and help get Bean in the bath
• Need to rethink our feeding plan and also am worried that he’s lost half a kilo since yesterday
• Despite barfing was still happy and said good night quite cheerfully
• I came home to find the mystery bag has disappeared - hurrah.
• Hoping tomorrow little man will feel alright.

Last week, I think I finally hit the proverbial wall after these many months of life in flux. I just felt completely done, physically and mentally. Just yesterday I started to feel some semblance of a normal energy level returning after feeling totally fatigued for over a week. I simply could not sleep enough, and my night-time sleeps weren’t very successful. I ended up napping, or trying to, every day with Gavin and sometimes sleeping a two hour stretch with him. I was on caffeine overload, but had little option but to drink yet more coffee, cause little Bean needs me awake. Bubby was kept very busy with the Gavinator as mama kept having siestas all day. Although I spent the last three nights at hospital, I actually managed to get some sleep there and had more solid rest knowing that Bean was safe by my side.

The last time we were here, I counted the days we actually spent in hospital, (18) but for variety’s sake this time I’ll count the days to engraftment, which is usually how it works around here. Transplant day is zero, so today is Day +1.

I had a nice uneventful day at hospital, which is how we like them. We were up at the crack of dawn and starting getting cleaned up and ready for the day. Daddy dropped off breakfast and Gavin and I amused ourselves by setting up the play area and decorating the room. The walls are now liberally covered with cards and drawings. Bean is feeling crafty lately and is very into colouring and using scissors. He finishes each picture with a big flourish and an “Ok! Mama, hang. Tape.” He has yet to grasp that scissors are actually easier to use with one hand, and refuses to be shown how to use them but hacks insistently away with two. Oh well, plenty of time before kindergarten! We carefully cut out the Backyardigans cut-outs (from neighbour Jenn) and stuck them on the wall too. Add to that some funny pictures of our friends Violet and Jem, and the walls look pretty cheerful.

I am extremely satisfied to report that Gavin’s second stem-cell transplant went very well today. The three of us spent the morning packing up our “normal” room to make the move to the isolation fishbowl. Before leaving, we were granted permission to let Gav have a proper soak in the tub, as we were changing the dressing, etc. of his central line directly afterwards anyway, so if things got wet it wasn’t the end of the world.