Planning For The Immediate Future

Lovers around the world celebrated Valentine's Day today, with chocolates and roses and dinner dates. We celebrated today as a family, visiting the Sydney Children's Hospital.

Yesterday, Dr Gray rang us to check on Sean, and I mentioned that Sean was having an "off" day. When he pressed for more details, I told Dr Gray that Sean was a bit more clingy than usual, and he was generally not as happy and active as he had been. Feeding Sean had also become quite laborious, often the task would take an hour to get a decent amount of food into the little man. Prior to Dr Gray calling, I had attributed this shift in mood to Sean's teething - all four of his molars were cutting through, and Sean had become more drooly over the last few days. As Sean didn't have a runny nose, nor a cough, nor a temperature, nor had he suffered any vomiting or diarrhoea, I didn't think it warranted a trip to hospital.

I did, however, think it was necessary for us to visit a speech pathologist to get some helpful hints and tips and tools to get Sean to eat his meals faster. So Dr Gray's call yesterday was timely, as I had wanted to gauge his willingness to allow us a trip to the speech pathologist. Alas, when I told Dr Gray of Sean's mood swing, he made an appointment for us to visit him in hospital for a check up, with a view to revealing some news relating to Sean's life saving treatment.

Jonathan took the day off work to come in to the hospital with us, and he was glad he did. We were greeted by Dr Gray and Dr Percival (the Immunology Registrar), as well as Jennifer the dietitian and Anne from the Bone Marrow Transplant team. Anne was the coordinator for bone marrow tissue typing, and we had had the pleasure of dealing with her during our initial long stay in hospital.

Dr Gray ordered bloods to be taken from Sean for more tests, one of which was to see how his IgG antibodies levels were going. If the count fell below the optimum level, then Sean would require another infusion as soon as they could arrange for Red Cross to send the products over to the SCH.

While we were waiting for the Blood Sisters to come to the Medical Day Unit, Dr Gray and Anne went through the latest news with us. After searching for a match through the Bone Marrow Donors Worldwide, it appeared Anne had found a few compatible cord blood matches. A 6/6 match would be considered a perfect match, and Anne and her team had found one 6/6 match, with several 5/6 matches as backups. This was great news for us, but then the process of a transplant was explained to us.

Sean would have to get really sick before he gets better. Prior to the transplant, Sean has to go through a process called "conditioning", which kills off the rest of his immune system to prepare his body to accept the new cells. "Conditioning" involves radiotherapy, or a form of chemotherapy, and the doctors warned us that Sean will becoming very very sick during this time.

After the "conditioning" is completed, the doctors will perform the transplant, and Anne warned us that Sean will be even sicker for some time. She didn't mince her words - things are going to be really rough for us, and we should be prepared for a lot of stressful days and nights.

With everything that's been going on, it didn't click for me that Sean would have to get very very sick in order to get better. My brain didn't register that there was this conditioning period, and that there would be radiotherapy. And with the plan now laid out in front of me, it was all very daunting.

The timetable that was then discussed was even more daunting. Because of the XSCID, there is a real sense of urgency to get the transplant done, as quickly as possible. The longer we wait, the higher the risk of Sean catching a virus or an infection which would make him unsuitable for transplant. Then they dropped the magic number.

4.

Dr Gray and Anne want the transplant to happen in about 4 weeks. Anne still needed to get the tissue typing finalised, Dr Gray still needed to work with others to find the best course of conditioning for Sean, and we still needed to get Sean much bigger and fatter before we can start the conditioning.

That was where the dietitian came in. Sean was definitely going to need a nasogastric tube for overnight supplementary feeding. We made arrangements to be admitted next Monday (20 February) to have the tube passed, and an overnight stay for me and Sean so we could both get used to the equipment.

Everything was happening at breakneck speed for us. Our heads were spinning with information. There was mention of starting a central line on Sean closer to the transplant date, because the doctors will need to draw a lot of blood from him for tests, and it would be easier for the doctors to administer drugs and all that jazz. Before the transplant, we would meet with Dr Tracey O'Brien, the Head of Cord and Marrow Transplant program who would explain further the entire transplant process. In the meantime, Anne told us that once we get started with the conditioning, Sean would be quite sick for about a month - a week or so for conditioning, and then the transplant itself, followed by a couple of weeks while we waited to see if Sean's body will accept or reject the transplant. We need to be prepared to be in hospital for a while, up to 10 weeks.

So much to absorb. So much to prepare for. So many things we still need to do, and want to do.

For now, we need to come back in a couple of days for another IVIg infusion, and we need to start planning for the long stay. Jonathan and I have started a list of things we need / want to take to hospital, necessities such as toiletries, clothes, etc, and other items like toys for Sean, and the very beloved quilt that Nana made for him. Jonathan and I need to formulate a plan to ensure we still met our commitment to see Mina every weekend during Sean's treatment, but we needed to come up with a way of asking for special consideration from the Evil Witch, and hope that she won't fly off the handle when we do ask. Jonathan also needs to have a chat with his manager and the HR department about his working arrangements.

In the meantime, we need to assure and reassure our family that we are doing the right thing, based on the right medical advice, and that we are doing as much as we humanly possibly can to get through each day and look after our sick little guy. We've faced a few hurdles with my family, who asked a few questions of us that upset us. Whilst we know they care, and they are concerned about us, we are just not up to being interrogated and repeatedly asked if we have done all the necessary research about Sean's treatment plan.

To take our minds off the latest barrage of news, we went grocery shopping after we left the hospital. It was lovely to be doing something normal with Jonathan, and even though the reason we got to spend the whole day together was tinged with sadness, time as a family is blissful. And now, so so precious.