Day -7: And So It Begins

And so it begins.

Sean and I left our home this morning for the last time in a while, and headed to the Sydney Children's Hospital to start the arduous road to what we hope will be a cure for the Severe Combined Immunodeficiency.

We still had so much to do this morning when we woke up - we still had to finish packing, and I had wanted to alter the length of 2 pairs of pants I was hoping to take to the hospital to wear. Jonathan had set up the sewing machine for me last night, but we ended up spending the night watching TV and enjoying each other's company. After feeding Sean his breakfast this morning, I got on to altering the pants. It took us 20 minutes to find all the bits and pieces for the sewing machine that were still in the linen press, but once I got going, it only took 15 minutes to get the job done.

The last of our big list of things were packed and we ended up with a large suitcase, a smaller suitcase, a bag full of Sean's toys and a bag full of food, not to mention some last minute items that were thrown into Jonathan's backpack that he was going to take to and from the hospital. There was also the foam overlay for the uncomfortable sofa bed and my pillow to add to the pile of stuff we were taking with us. The boot of our car was full by the time Jonathan finished loading everything in.

Sean was so cute. He waved goodbye to the house, and he waved goodbye to the neighbours, and just after 10am, we drove away from our little home, our stomachs in knots with nervous tension. Our transplant journey had begun.

Sean slept for most of the way to the hospital, and Jonathan and I tried to keep the conversation light and non-specific to try and keep our minds off what was ahead of us. Sean woke as we were parking the car, in good spirits and smiling.

We looked like refugees lugging all of our worldly belongings from the car park all the way to the ward. We started off with me carrying Sean on one hip, the bag of food over the other shoulder and trying to balance a bag of toys on the small suitcase and dragging it behind me, and Jonathan carrying his backpack on his back, dragging the bigger suitcase with one hand and carrying the pillow and the foam overlay with the other. By the time we got to the ward, Jonathan was carrying Sean and his backpack and wheeling the bigger suitcase, and I was carrying everything else.

Today was really the "prep" day. The chemotherapy will actually start tomorrow. The team wanted to get us in today to get a few tests done, some baselines measured, and to get some medications started on Sean in readiness for the first dose of treosulfan, fludarabine and alemtuzumab tomorrow. For the next 3 days, Sean will get a dose of each of these three drugs, then the treosulfan would be stopped and the fludarabine and alemtuzumab would continue for 2 more days. On Sunday, Sean will also receive a couple more medications, before being granted a rest day on Monday next week. The cord blood transplant will happen on Tuesday 27 March.

We met a flurry of doctors from the Transplant programme. There was Dr Adam, Dr Andy, Dr Cris and Dr Juan, and Dr Gray paid us a visit too. Laura took us through the transplant schedule, and told us how often the nurses would be checking on Sean during the chemotherapy part of the schedule. We are going to be expecting a few sleepless nights. Laura also mentioned a few practical things for us to think about, such getting Sean's hair clipped to a buzz cut, so that when he starts losing his hair from the chemotherapy, the hair won't fall out in clumps and get smooshed into everything.

Laura also took us through a bit of housekeeping information, such as how our negative pressure room worked, what we were allowed to have in the room, how to wash and sanitise our hands properly, and how meals would be delivered to our room. We also went through who would be allowed to visit, and we registered my parents, my sister Grace, and Elissa and Penny as our support crew. I joked our room was to be known as Club 2W17, an exclusive club where only those with their names on the door were allowed entry, and the door bitches have a strict "no name, no entry" policy.

Our nurse Trish hooked a large number of lines with offshoots to Sean's central line, and hooked all those lines to a large number of machines all hanging from a pole. While it looked like there were a million lines, this was only the start of it. There will be more lines snaking around my little man, and we can expect the lines to be hooked up to more machines. Before long, Sean should have enough machines to fill two poles.

Jonathan and I joked that Sean was turning into a cyborg. Poor little man.

Laura managed to snaffle a thick mattress for us to use on the sofa bed - she saw it in another room which no one was using and thought it would be good for me. It looked very comfortable, and as I type this, I'm sitting on it and it IS quite comfortable, so I hope I'll get a good night's sleep tonight on this thick mattress.

During our discussions today, Laura told us that the stem cells Sean will be receiving came from the cord blood of a Caucasian female in the USA, and the cells were a 5/6 match. We are so grateful to these wonderful generous people for their donation.

Around mid-afternoon, Trish told us she had to reinsert the nasogastric tube into Sean. She went through in great detail what she would do during the insertion, and what would likely happen after the insertion, especially if it was a traumatic insertion. Jonathan had never seen an NG tube being passed into Sean, and appreciated having the procedure explained to him. I only wished Trish had been the nurse responsible for passing Sean's first NG tube - I would have appreciated the level of detail Trish gave us.

It was a hugely traumatic insertion. Sean kicked and screamed, and kicked and screamed, and kicked and screamed some more. I couldn't watch, and sat away from the action, crying and listening to my heart break as my little man struggled against the nurses and Jonathan. The first attempt through the left nostril was unsuccessful, as I had predicted based on previous insertions and told Trish as much before she began the procedure, so they gave Sean a short rest before trying the right nostril. Fortunately, the passage was less tricky and Trish passed the tube quickly.

As much as he was upset with the procedure and being held down by three people, Sean recovered quickly and even ate a decent amount of food for dinner. Jonathan and I took turns to eat our dinner - takeaway from Simon's Wok (across the road from the hospital) - we are going to get to know Simon and his wok very well in the coming weeks.

Even though we have been given all the information about Sean's chemotherapy, I still feel not quite ready for things to kick off tomorrow. I don't want the doctors to put deadly toxins into my son's body. I don't want them to muck around with his insides and make him sick. I don't want Sean to lose his hair. I don't want to be in hospital. I don't want my darling little man to be sick. I want someone to wake me from this nightmare and tell me it was a practical joke gone horribly wrong. That Sean doesn't have XSCID. That Sean isn't sick. That Sean is as healthy as healthy can be and that there is nothing wrong with him.

Life isn't fair, is it?

So, tomorrow, I'm going to put on my bravest face, and put my son's life into the hands of the transplant doctors and nurses, and trust that they know what they are doing, and hope that the transplant cures Sean. I'm going to give my son cuddles and kisses when he wants them, and hold him and comfort him when he cries. And I'm going to try to remember to breathe. And hope for the best.