This Is Our Normal Now..

People keep asking me if Dylan will be home soon, and that now he is on treatment they hope things will get back to normal soon. It's a lovely sentiment and it makes me smile to know people are thinking of us. I find it difficult to respond at times or say the right thing, I think unless you've ever been in the situation it's hard to understand the implications a long term and life threatening disease has upon a family and what they consider to be 'normal' or for how long that will last...

Chemotharapy for example can last anything from 6 months to 6 years plus. In Langerhans Cell Histiocytosis it is not uncommon for treatment to be up to 5 years! This means more than just 'hair loss' it means stomach problems, bowel problems and soreness, muscle aches, sickness, infection risks, decreased or increased appetite and general fatigue amongst other symptoms depending on which type of drug you are on.

Dylan's constant collapsed lungs, these are happening daily now and whilst eventually it should slow down now new cysts cannot form, this process can take MONTHS. Whilst this is happening he needs constant tubes to drain the air from his chest or it can compress his lungs causing respiratory failure or even compress his heart and cause cardiac arrest or worse. These tubes have to stay below heart level as they are water sealed to prevent air going back in. This means he cannot leave the bed properly, run around, or even go and play in the playrooms.

This is but a glimpse into our life at the moment, and we are only 2 months into a very long journey...

I have only slept in the same bed as my husband for a maximum of 14 nights since Christmas Day 2015.. or even under the same roof for that matter!

We spend one night at the hospital with Dylan each, then swap and spend one night at home with Bryce..

The house feels so empty!! Bryce goes to sleep in a bedroom with an empty bed in it, a bed that his brother only moved in to on Christmas Eve whilst poor Dylan sleeps in a hospital bed away from all his family, as there is no bedside space in HDU only parent rooms down the corridor.

Bryce and Dylan don't see each other 5 days a week, there just isn't time to sit in the rush hour traffic back to the QMC after school and then be back in time for dinner, homework and bedtime.

Dylan is scared, confused, bored and in a strange environment being poked and prodded and he only gets the comfort of both his parents in the same room for 4/5 hours a day at a time before one has to head back to fetch Bryce from school. Bryce also only has one parent at home with him each night / morning.

Mike isn't able to work at the moment..

We have another baby due in June and haven't brought a single item yet. All the boy's old clothes are still in the loft, the nursery needs re-painting, we don't have a pushchair, bottles, steriliser, baby monitor or even a crib anymore and we just haven't had the time to get anything yet! To be honest it has been the last thing on our minds.. it felt like all the excitement of a new baby was ripped away from us at only 3 days after our 12 week scan when Dylan first became ill..

Dylan's birthday is in 2 months.. He missed Bryce's and will no doubt be spending his special day in his hospital bed..

THIS is our 'normal' now and could be for quite some time.. it is exhausting, emotional, stressful and downright lonely at points BUT I would rather have it this way than not have Dylan still with us at all..

And that's what it is all about I guess, putting life into perspective despite the struggles we all face daily <3