New Chemotherapy = More Information + Date Change

Yes, today IS Monday, and we are still at home.

There has been a slight change of plans. We are going into hospital TOMORROW.

It all came about last Friday, when I received a phone call in the morning from Laura, asking if we could go back to the hospital for another chat with Dr Trahair about Sean's chemotherapy. We teed up an appointment at 4pm, so as to allow Jonathan to work until 3.30pm and leave the office for the afternoon to join us for the meeting. Last Friday was also Jonathan's last day of work for the next 4 weeks - he had arranged for time off with his managers so he could be at the hospital with us during the most difficult time.

We arrived at the hospital just after 4pm, and went straight to C2N for the meeting. Dr Trahair was running late, but he joined us before too long. Also sitting in the meeting were Megan, Laura and Dr Gray's associate, Dr Brynn Wainstein. Dr Trahair looked less like a mad scientist on Friday, having gotten a hair cut some time during the 4 days between our meetings.

Dr Trahair jumped straight into the information about another proposed course of chemotherapy for Sean. He had had a number of discussions with all of the other stem cells transplant centres around Australia, as well as the team at SCH, and everyone agreed that the new course of chemotherapy might be better for Sean.

Three completely different drugs would be used, and they are treosulfan, fludarabine and alemtuzumab. Dr Trahair went through some data that he had gleaned from his extensive research, and told us that this new combination had been used in the UK, and the studies showed a reduced occurrence of the liver disease called veno-occlusive disease (VOD). This combination also had a reduced toxicity, AND the duration of the chemotherapy was shorter - 6 days instead of 7. The potential side effects were pretty much the same as the previous combination of busulfan, cyclophosphamide and anti-thymocyte globulin (ATG), and the doctors and nurses have all the measures and protocols to treat anything that arose from the chemotherapy.

Dr Trahair was firm in telling us that although there was data to support the use of this new combination of drugs, it was taken from a small group of cases, and as such, this course of chemo was not the "standard" course. However, the findings made him and the transplant team think it was the better course of chemo for Sean, and hence he was offering the information to us, and letting us decide if this was what we wanted as well.

Jonathan and I agreed to the new course of chemotherapy, and Dr Trahair gave us a new start date for the chemotherapy. We were then told we would not be admitted until Tuesday 20 March (tomorrow). Since we were trying to maximise Jonathan's leave days from work, it was a "face-palm" moment when we were given the new date, as Jonathan could have worked today and saved the leave for later down the track.

In the end, it didn't matter that Jonathan had already taken today off. We spent the day together as a family, and had a lovely relaxing day which included a final outing for Sean for the next few months.

We saw my family on Saturday night, and we told them about the new start date and the new course of chemotherapy. Vinay had all sorts of questions for us, and it was clear that he and Grace had done a fair bit of research on the drugs the doctors will be using on Sean. They are both pharmacists, so they already knew a lot of things about the chemo drugs.

Sean had a great time playing with his cousins Renée and Kiran and Danielle, running around and laughing, generally having fun. Sean was able to keep up with his very mobile cousins and they were delighted to see him chase after them.

After all the discussions with our medical team, Jonathan and I knew we would need a strong support network to get us through the hard part, so we could flake out to our support people and have a good cry, and then get up and get on with being strong for Sean. I really wanted my family to be around, but I hadn't asked them directly if they could be around. I had hoped my parents would innately know I needed them to be around, and at the very least offer to cancel their holiday plans. It was very clear that this was not going to happen, not even close. I had also hoped Grace and Vinay would also change their plans, but alas, being hopeful was not enough.

Vinay was quite vocal about the support people Jonathan and I had chosen. Since no one from my family was going to be around when we needed the most support, we asked our close friends Elissa and Penny to be part of our network. In fact, we didn't even have to ask them - they had offered and told us they would have been offended to not be asked. Vinay was against us allowing extra bodies into Sean's room, and said that if it was his child going through what Sean was about to go through, he wouldn't let people who weren't family into the room. I was upset enough to bite back. I told Vinay that if it was his child, Jonathan and I would have cancelled our holiday in a heart beat. I told him that as it was, we just need people around us who can provide comfort and support, even if it was to just be in the room with us, hugging us while we cried. Elissa and Penny were happy to do that for us when my whole family was heading off on a holiday. That made Vinay back off a bit.

Towards the end of the evening, I asked my mother if she had considered cancelling their impending holiday to stay in Sydney and to be near Sean and us. In short, she said "no". She said she had made a promise to Uncle Patrick to attend my cousin Emmie's wedding banquet in Hong Kong, and she had also made a promise to Uncle Charles to go to Japan for their holiday. After making all these promises, it seemed nothing would stop her and Dad from fulfilling these promises, not even their grandson who was about to go into hospital for life threatening treatment.

We spent the rest of the weekend just hanging out, enjoying our last few days at home. Yesterday, Jonathan started cleaning the suitcase and the toys we were going to take to the hospital. This morning, we started putting all the things from our list into the luggage. For all intents and purposes, we are packing for a 2 month stay away from home, so there was a lot of stuff to take. What started out as one suitcase has grown to a suitcase and the smaller carry-on case, as well as a bag full of toys. Not to mention the foam mattress and a pillow. It is going to take 2 trips from the car to get everything into the hospital room.

There is still a bit of packing to do, but it's late and we need to get some sleep. It will be the last night Jonathan and I will sleep in our bed together for a while, so we're going to make the most of it. Sean has been asleep for hours - we think he must somehow know something is happening tomorrow, and he is going to be away from home for a while.

I don't want tomorrow to arrive. I'm not ready. But I'm going to have to be ready. Suck it up, put on a happy face, and be brave, for me, for Jonathan, and for our little man.