Dom's Journey

This is Not a "Normal" Cancer (if you can call cancer normal) it's different, (you've probably never heard of it before) it's rare, it's LCH - Langerhan's Cell Histiocytosis to be exact. It has no rules it can appear anywhere and in so many different ways. it can attack the skeleton, the muscle and tissue, the organs or even the skin basically it is able to attack any and every simple tiny cell in your body there is no limit, which means because of how rare it is, others think we are making it up. And honestly I wish they were right.

Dom and Mum, (Coralie/Me) planned on spending 1 night in the hospital for some tests to be done and ended up being there for 2.5 weeks awaiting answers. They did blood tests and deprivation tests, they did CAT scans and MRI scans, they did Lumbar punctures and constant heel and finger pricks, they sent all these things to Doctors all over the country and even a few to Australia to get answers for what was happening to our beautiful boy. But when it came it was as if my world had just stopped but everything else kept going because the answer I got was Cancer. Calling Dom's Father Sam, unable to say nothing except What time do you finish work? Please come straight to the hospital when you've finished" Then I asked the Dr to come back at that time to explain it again to my husband and Mother-In-Law, Dom's nana.

After hearing that one word your world stops. You don't hear, you don't see, you don't feel and only one thing keeps going through your head Cancer..Cancer..Cancer.. You look at your gorgeous wee boy and all you hear is Cancer...Cancer...Cancer... Everybody asks Are you all right? Is there anything we can do? but you can't answer them honestly so you lie. Yes we are fine, No there's nothing anyone can do?

The truth is much harder No we aren't fine, we don't know from one day to the next if we are going to have our wee soldier with us. We don't know if he's going to make it to his next birthday. All we want to do is live and enjoy each and every single second with him because we don't know if and when we will have another. We tell people "Yeah he's doing great..." we don't add ...at the moment or ...today, because yesterday was a nightmare". Our lives have become a pretence, a portraying of normalcy. Our other two Sons 9 and 11 years old, trying to keep going without it effecting them too much. We are lucky enough to live in Dunedin instead of a small town on the west coast. Dom's chemotherapy treatments are at this stage still able to be done in Dunedin and we can live at home, although, we have had a number of times in Ronald McDonald House and CHOC in Christchurch for surgeries, treatments, tests and specialists. Living under this storm cloud of Cancer means we don't know from one week to the next whether we will be at home in our own beds or up in Chricstchurch on the CHOC ward or in RMH. We talk to Dom's elder brothers every day and every day they ask When are you coming home? And we can't answer because we dont know. We get told - "Get to Chch hes in surgery on Friday" We dont get told "its only for a couple of days" we don't get told when we will be sent home, until the day before and by then its been weeks missing our family and our home. We dont know what the future holds all we know is tomorrow is another day.

In the Meantime Dom has Chemotherapy which can cause him to be sick, tired and generally miserable. It's meant that he's taken alot of time off from Kindy and I thank goodness its not school YET. We have Good days and We have Bad. We have 3 boys NOT 1 and we want to enjoy our time together as a family without the weight of the world pressing us down. We just keep going under this umbrella made of that one word. Cancer...Cancer...Cancer...