A month ago we saw our Immunolgy consultants who were really pleased with Woody's progress and they decided to go from monthly monitoring to two monthly. Then three days after this appointment we got a phone-call completely out of the blue from Great Ormond street who told us Woody was being admitted 3 days later and that he needed a Bone Marrow Transplant.
We had gone from thinking Woody might need a bone marrow transplant sometime in the future to being told - he needs one and needs one now.
That next week was incredibly hard and we just felt shell shocked, but two weeks later day to day life continues and for small moments in the day - normality takes over and you forget.
In these moments of ‘normal life’ Woody IS going to school and we go to work and life feels like it’s like anyone else’s, but then you’re punched in the stomach when you remember that life as we know it is about to change dramatically.
This is the thing that is the hardest. It’s hard to wrap your head around the fact that Woody is poorly when he is running around with his brothers and doesn’t understand why he can’t do the same things as everyone else.
He doesn’t feel poorly, he wants to go swimming, to the cinema, play with his friends, go skateboarding etc.
How do you explain to an 8 year old who cries and says “it’s not fair.. why me… please don’t let them put another cannula in” that his bone marrow is failing and he has to go into hospital for months on end.
The thought of being separated from Bodhi and Josh for weeks breaks my heart, I know some families do this all the time, but I have never spent more than a few days away from them since they were born. Bodhi is so little and he is becoming more clingy the more time I have to spend in hospital with Woody. Josh is struggling and is worried Woody is going to die.
How do we put our trust in the doctors who say now is the time to transplant. When our other doctors say it isn’t. How do you stop your mind from thinking - what would have happened if we kept going like he is now. He seems to be doing so well since the diagnosis - so well - to the point we still can’t believe this is happening.
I gently try to discuss the next stage with woody, he immediately wants to change the subject. He is scared - so I stop.
I want to cry but if I start to the kids start to get upset and worried - what am I crying about?
I feel guilty about being away from the children - I feel guilty about doing anything fun - I don’t want to do anything because why should I be able to enjoy life when my baby can’t.
I went to the theatre last week and mid show I had a panic attack and when I got home I sobbed and said “I’m never leaving him again”
This is the hardest thing I have ever had to go through and I know this is only the beginning.
When we go in for the transplant and I watch my baby being made so poorly in order to be able to accept the new bone marrow and Woody begging me to not let them give him any more drugs is something that is already giving me nightmares and it hasn’t even started yet.
I can’t sleep properly. I wake up and the first thing I think about is Woody. I lay awake for hours thinking how will we cope. I panic that after all this will we still be a family of five?
The ‘parents guide to bone marrow transplant’ is literally THE WORST BOOK I have ever read in my entire life. And I want to rewind my life two years to when everything was perfect. Or someone please invent a time machine and tell me that we will get through this. All of us.
I know reading this peoples natural reaction will be to reach out and tell me to think positive- I’ve got to be positive and everything will be ok.
Believe me, we are being positive 95% of the time because we have no choice to be anything else, because the children are around. But that 5% of the other time that we NEED to talk and get stuff off our chest, when you are met with - ‘don’t worry’ ‘everything will be ok’ ‘you have to be positive’ it makes us feel like we're being told we’re not allowed to express our feelings. We have to take small moments of time to actually process what is going on and to talk about our worries in order to get through this.
Also, being told - you and dave are the strongest people I know, you’ll be amazing through this - is also bullshit. We’re not stronger than anyone else. We are absolutely broken, mentally and physically exhausted and completely petrified.
Why would anyone ever think that was an okay thing to say to someone? Is it because they think - I wouldn’t be able to cope if I was in their situation. Well if it is, let me tell you, I would have the same thought if I’d heard someone else was in this situation. But unfortunately for us, we are the ones that are having to go through it.
Just needed to get this down and out of my head.
I’m ok. This isn’t written to get people to feel sorry for us, or reach out and help. It’s so I don’t have to explain to each person that says “ think positive- don’t worry” that believe me, we are bloody positive - but if we feel able to offload our 5% anxieties / worries to you, then please feel privileged and please, just listen. No advise necessary.