News & Initial Diagnosis

For the second time in less than a week, our hearts broke, with news of an initial diagnosis on our precious little man.

After being subjected to a myriad of blood tests, and having endured a number of people poking and prodding him, drawing blood and taking various other samples, the doctors were finally able to tell us what they have discovered so far. It appeared Sean has Severe Combined Immunodeficiency (SCID). This disease is a life long illness that will require regular treatment to keep Sean alive. We had never heard of this disease, but over the next week or so, we were to learn all about it.

We learned today that Sean was also suffering from a form of pneumonia - the doctors rattled off some acronyms, and PCP (which we later found out stood for Pneumocystis jiroveci Pneumonia) were the 3 letters that kept coming up. Sean's compromised immune system led to this infection, which would now need to be treated with antibiotics.

For the third time in 4 days, we moved again to a different room, this time on to the oncology ward to a private room. We only hope that the doctors would be able to find us.

If you are interested in finding out more about SCID, please click here and here. The information on these sites comes from USA. For Australian information, it's best to go here.

◦•◦♡◦•◦♥◦•◦♡◦•◦♥◦•◦♡◦•◦♥◦•◦♡◦•◦

Hi Mum and Dad,

We wanted news, and we got some today.

After waiting most of the morning for someone to see us, almost every specialist in the hospital came by for a chat. We saw the respiratory team, the haematology team, and the immunology team. One after another, they filed in to see us, and told us what they had found so far. In a flurry, the need for surgery to remove the lymph node was erased, and the surgical team was put aside for the time being.

As each new team stopped to talk to us, more and more medical terms were sprouted. Our heads were spinning by the end.

News isn't so great though. In a nutshell, Sean has no immune system, and will require monthly transfusions for the rest of his life, most likely through a central line. The doctors think he has an extremely rare form of this immunodeficiency and may at some point require a bone marrow transplant. They are going to do more tests tomorrow to see which form of immunodeficiency Sean has before devising a definitive plan.

We have been moved again; we're now in a "clean" ward in a room of our own as the doctors do not want to run the risk of Sean picking up any more bugs. As it is, Sean has a pretty bad chest infection. They are looking to start the immunoglobulin replacement therapy tomorrow, and start the process to see if me or Jonathan are a match as a potential donor. For now, we are in hospital for at least another week.

Please keep us in your prayers. We need some good vibes. I'm a little low on the smiles but I'm trying hard to be brave for Sean, and Jonathan is barely holding it together too but is being solid as a rock.

So many things to consider now, such as if we will have another baby, if I can go back to work with Sean's condition (there's every chance he can't go to day care at all), and the worries of the mortgage, and how to ask for assistance and special consideration from M's mother (to be vigilant about M's health as we would not be able to have M stay if she's sick).

We wish we can give all of our bone marrow to Sean right now to make him all better. It's so heartbreaking to see him hooked up to so many things and yet still manages to smile and giggle and play. We just want our little man to be healthy and not have to deal with a lifelong disease. We just want to take him home, now.

Alas, we don't have a magic wand. We have to trust the medical professionals looking after Sean to treat him and make him better.

Jonathan has gone home again. I have a bed tonight - huge step up from last night when I was in a very uncomfortable recliner. Little man is happily sleeping away, oblivious to all the fuss he's created. I look at him and wonder if I'll ever be able to hold him without worrying about detaching the oxygen line or getting a kink in his IV line.

Sorry to be a bit sad. Trying to stop sobbing but not doing so great right now. Will try and sleep tonight so we can fight on tomorrow.

We'll write again tomorrow night.