The "Big Talk", AKA The Talk We Had To Have

I feel numb.

And scared.

But mainly numb.

It's been 30 hours since the doctors gave us the "big talk", and we are still trying to process the flood of information that was poured into our laps yesterday afternoon.

Late last Friday afternoon, after Sean was discharged from hospital (after the doctors inserted the central line), Dr Gray called us to change the "big talk" from this afternoon to yesterday afternoon. We were also informed in this conversation that the lead physician was not going to be Dr Tracey O'Brien, but Sean's case will now be managed by Dr Toby Trahair.

When we first heard of Dr O'Brien, I had Googled her to find out what her position at the hospital was, and found she was the Head of Stem Cell Transplant Programme. I was impressed that we had managed to get another senior doctor to look after Sean, and even though I was anxious to get through the "big talk", I was somewhat appeased by the fact that we were going to speak to head doctor.

So when Dr Gray threw a new name into the ring, we were a bit put off with the latest change. Dr Gray had mentioned that there may be a change of personnel closer to transplant time, but he was quite sure that we would be working with Dr O'Brien. After Dr Gray's phone call, I Googled Dr Trahair, and was dismayed to find his title was "PART-TIME staff specialists in Haematology / Oncology". The caps in "part time" were not my doing - this was how his title appeared on the website for the Centre for Cancer and Blood Disorders at Sydney Children’s Hospital.

We went from having the head of the programme looking after Sean's transplant, to a part time specialist. That didn't sit well with me.

All weekend, I tossed up the idea of calling Dr Gray and grilling him about Dr Trahair's experience and reputation, as well as calling Dr Allen to ask the same question. After raising my concerns with Jonathan, we decided to grill Dr Trahair himself when we met with him yesterday. I was still uneasy about the change of doctors by yesterday morning, and knew I had to call someone before the meeting with Dr Trahair.

Yesterday morning, we arrived at the Prince of Wales Hospital's Nuclear Medicine department to get a Glomerular Filtration Rate (GFR) test done on Sean. The test involved injecting a dye into Sean, and drawing blood from Sean one hour after the dye injection and 3 hours after the dye injection, so the doctors could measure the difference between the two lots of bloods to see how well Sean's kidneys were working. This was the first time Sean's central line was used to perform the procedure, and Sean didn't seem to mind the nurse doing her thing.

While we waited for the test to be completed, my anxiousness about the change of transplant doctors caught up to me and I called Dr Allen to have a quick chat. Since Dr Allen admitted us to hospital on 5 January, we had been keeping him apprised of Sean's condition and treatment plan and given him updates where necessary. We like Dr Allen and we trust him, and he also consulted at the Sydney Children's Hospital, so he felt like our best bet to ask questions about Dr Trahair. Dr Allen was pleased to hear about the impending transplant, and when we asked about Dr Trahair, his exact words were "Toby's great, you're in good hands, you'll like him". Nice. Fears allayed.

The GFR was completed by 12.30pm, so we had 90 minutes to wait until our meeting with Dr Trahair, so Jonathan took me up to the Royal Randwick Shopping Centre. In my outings to the shops during previous hospital stays, I had only wandered up to the Coles supermarket in the Randwick Plaza, so it was an eye opening experience to know that the shopping centre was just a little way further down Belmore Road.

The Royal Randwick is only a small shopping centre, but it had a passable food court and several takeaway outlets, as well as a Woolworths, a large fruit and veg shop, and on the upper level, a Post Office and Best & Less. We'd fed Sean some lunch prior to leave the hospital grounds, so we only needed to look after ourselves for lunch when we got to the shopping centre. I had some fairly decent sushi while Jonathan enjoyed a BLT burger from McDonalds.

On our way back to the hospital after lunch, Jonathan pointed out other important shops that I may want to take note of, namely the Gloria Jeans coffee shop and the Subway outlet. These two shops were about 20 paces further along Belmore Road from the entrance of the Royal Randwick, and it was nice to know they weren't too far away from the hospital. I also spotted an EasyWay bubble tea shop across the road, which made me smile. I love EasyWay! It will do me good to go for a walk to get our coffees every now and again once we are in the hospital for the long stay.

We were about 15 minutes early for our meeting, and upon arrival at C2N, the nurses immediately put us into an isolation room. It seemed everyone had warned them of our impending arrival, and it was nice to be ushered in like VIPs. The people who would attend the meeting with us slowly trickled in - we saw Dr Gray first, then Megan, then Anne (filling in for Laura who had a day off yesterday), and finally, Dr Trahair appeared. We moved to a meeting room and dove straight into the "big talk".

Dr Trahair seemed nice. His wild unkempt hair made him look like a mad scientist, but he sounded professional and intelligent, and we slowly warmed to him as he tried his best to get through a huge amount of information in a very short space of time.

In short, the situation is this: if we don't consent to a transplant for Sean, then he will die. If we do consent to the transplant, then he could still die. If something happens during the chemo, then he could die. If something happens after the transplant, then he could die. And even if everything goes well, there is still a chance of further complications and he could still die.

For nearly 2 hours, we were given information about the chemotherapy the doctors will use: the drugs Dr Trahair mentioned were busulfan, cyclophosphamide and anti-thymocyte globulin (ATG). There are various possible side effects relating to these drugs: hair loss, nausea and vomiting, diarrhoea, and mucositis (ulcers in his mouth, throat and gut), darkening of his skin, seizures, bladder irriation, fever, chills, low blood pressure, skin rashes. There are various potential complications that may occur, such as liver damage (veno-occlusive disease or VOD), bacterial or fungal infections, heart damage, lung damage, secondary cancer, and infertility. We were warned that 40% of all transplant patients develop a degree of Graft-Versus-Host Disease (GVHD) somewhere along the treatment journey, and this ranged from some mild vomiting to a stay in the Intensive Care Unit.

We were assured that the doctors have all sorts of measures to prevent complications from happening, and if they do happen, then there are all sorts of measures to treat the complications. They also have all sorts of measures to treat any side effects that may occur. If at any point Sean's condition deteriorates, there may be a need for him to spend some time in ICU. But the doctors are prepped for that too, if it does happen.

A lot of the discussion around the chemotherapy had to do with the level of intensity and toxicity relating to the drugs. Dr Trahair explained there were 2 types of chemotherapy: "standard conditioning" and "reduced intensity conditioning". He went through the pros and cons of both, and explained to us that after length discussions with the transplant team and a large number of their colleagues in transplant centres around Australia and the world, it was decided that Sean will receive the standard conditioning.

During the meeting, we were also given some information about the transplant itself. Dr Trahair confirmed Sean was definitely getting stem cells from cord blood, and that it was already at the hospital, waiting to be transplanted into Sean when the conditioning has been completed.

I won't lie to you. The "big talk" was awful. And there was a lot of information. At one point, I actually saw words flying out of Dr Trahair's mouth, words with razor sharp edges that cut me and hurt me as the words hit my face. Jonathan and I must have looked an unhealthy shade of grey, for Anne asked if we needed a break and reminded us to breathe.

I started sobbing. Big horrible sobs of despair. I didn't want to hear any more. I just wanted to throw my hands up in the air and run away. Scream. Beat my chest. Shake someone. Scream some more.

Jonathan put his arms around me and somehow, we managed to get through to the end of the "big talk". While we were receiving the information, Sean was happily and busily tearing the meeting room apart, playing with all the toys, climbing up and down the foot stool, climbing in and out of the toy box, and generally being active and inquisitive. The heart wrenching, heartbreaking paradox of this full of life little boy and his life threatening disease was not lost on anyone in the room.

There was only so much information we could take in, and thankfully, after our enforced tears break, Dr Trahair had only a small amount of information to get through, before asking us to sign all the paperwork consenting to the transplant. Once everything was signed, we confirmed the admission date, being next Monday (19 March), to start the chemotherapy.

If all goes well, we should be able to say Sean is cured 12 months after transplant. It was a question we needed to ask as it impacted on a number of things, such as my return to work, and when and if Jonathan and I can safely discuss having another baby. Sadly, it is unlikely I will be returning to work any sooner than April next year, so here's hoping I will still have a job to go back to. As for another baby, the chances of that happening grow slimmer as each day passes.

Sean fell asleep towards the end of the meeting, so it was nice to not have to look after him when Anne talked to us about putting together our support network. We needed to give the hospital the list of people that we feel would be the best people to support us through the arduous transplant period, especially during chemo and the first 3 weeks after transplant. As neither of our families are in Sydney during this time (Jonathan's family lives in New Zealand, and mine has seen fit to continue their holiday plans), we needed to have a serious chat about which of our friends we can ask to be part of our support network.

Even though the "big talk" was moved to yesterday, Jonathan still chose to take today off work to spend time with us. We are both trying to make the most of our time with a happy, active, and fun baby, before the chemotherapy sets in and make him very sick.

We had a good long chat with Jonathan's parents this morning on Skype. We gave them a good summary of what the doctors told us, and when they asked us questions, we were able to answer them. Mum and Dad offered to fly over to be with us during the most stressful part of the treatment, and we thanked them and told them we would definitely call if we needed them to be in Sydney. Mum offered to make a few more awesome romper suits for Sean - she'd altered 3 suits to add a row of snaps to each of the shoulders and along the top of the sleeves, so that we could get the suits off Sean without having to pull them over his head - and we told her we would definitely place an order if we needed more. It was great to see them and we felt a bit stronger from having taken them through the summary of the "big talk".

We took a calculated risk and went out to have lunch with Dad and Mum. It was the first time we'd had yum cha together this year, and it was likely to be the last. After lunch, we wandered around Chatswood Westfield, trying to work out if we needed to buy anything for our long stay in hospital, before heading home to relax for the afternoon. As we had arranged to have dinner with Dad and Mum tonight, we only had a short time at home before heading out again.

Over dinner, we explained things to Dad and Mum. We opted to leave out some of the harsh words, as I felt it wasn't in their best interest to get all the gory details; plus my passable conversational Cantonese was only good enough to explain the procedures and some of the potential side effects, and I only touched on some of the "if this happens, Sean could die" parts. In hindsight, we should have been more explicit with our explanation. Jonathan and I came away from the dinner wondering if Dad and Mum had a true and real idea / appreciation of how sick Sean will be, and how dangerous the whole treatment is.

I still held a glimmer of hope that after we explained the chemotherapy and transplant treatments to my parents that they would immediately cancel their holiday plans and remain in Sydney to be close to us and Sean, or at the very least offer to cancel their holiday plans. How fanciful of me to have that hope.

The "big talk" and the smaller talks with our parents have left us a bit numb. There was so much information, and it was quite exhausting having to repeat the information in summary form. Every time we repeated the information, the gravity of the impending treatment sank in a bit more. And we become more scared. There are still more people to tell - we are seeing Grace and Vinay and their kids on Saturday night to go through the information with them, and we still need to draft an email to our families and close friends to explain everything.

Less than a week to go before our long stay, and still so much to do. We have been collating a list of things we need / want to take to the hospital, and the list grows longer every day. We haven't even started packing yet, and I wonder if we will be able to fit everything into the largest suitcase we own! We haven't started cleaning the toys we want to take for Sean, nor have we even decided which toys to take. I'm dreading the start of the "cure", and it still doesn't seem real. I don't know how I'm going to be on Sunday night. Probably messy. Most likely teary. But hopefully ready to face this almighty challenge.