Things Working Out For Good

In the five days since I was last in hospital, Scooby has been through some tough stuff. Last week’s chemo effects kicked in with a vengeance and his skin started erupting with blisters. Like his asthmatic activity, it was unexpected and although the staff weren’t really sure what to do, there are so many weird individual reactions to chemo cocktails that apparently there isn’t a ‘normal’ expected outcome so we have been told not to worry too much. One of the few remaining departments of RMCH that hadn’t been a part of Scooby’s case have now joined in – the burns and plastic specialists came up to have a look. Their plan is to break open all the blisters, clean them out, medicate and wrap them for three days at a time so that there is no risk of infection to them. This was done last night, and although they turned Scooby’s morphine up to the max for it, I admit that I was so very grateful not to be the parent there to witness it. Richard’s stomach is definitely stronger when it comes to things like that. After two years, I am only just into the being-able-to-watch-a-blood-test phase, which unfortunately we are back into as Scooby’s central line can’t be used at the moment for having some of his blood tests taken, so he has to have needles again which creates another point of possible infection....

The sores also include ulcers in his mouth and throat, so he is being fed IV nutrients again, and he’s back to sleeping a lot because of the huge amounts of pain medication. Oh, and they couldn’t completely wrap the skin around his groin and bottom obviously, so that part is extremely sore again and has open wounds which are at risk of infection.... And he is still retaining all that fluid which means his beautiful face is stretched and distorted and takes my breath away every time I come back after my turn at home. He has no neck whatsoever – just a huge bloated mass that starts under his temples and rolls over to his collar bone. Some days when he wakes up, extra fluid has settled onto his eyelids, turning the bottom ones over so they fold into his eye and the lashes are touching his eyeball and he can hardly see for them watering so much.

So this week pretty much sucks. We know this is progress, even if it looks like going backwards in time, but it’s hard to see him going through all this knowing we let it deliberately happen to him after he was starting to feel better. We are on day 5 of a 180 day process which sounds like nothing really, but apparently the first two weeks are the hardest, and we’re already a good way into them, so we just have to grit our teeth, have the occasional weep, and keep going till we see it through.

So to balance it out this week I have been thinking of lots of other things that remind us in the sucky times that things really are, and have been, working together for good, long before we realised they would. There are too many to mention, but here’s some I’ve been focusing on this week:

1. The fact that although we’ve been staying at hospital almost every week since the end of the August, the break came from mid-November to the end of December when we had six weeks with only regular outpatient visits to hospital. Scooby had been so upset at the thought of having seizures or being in hospital at Christmas, but it didn’t happen. We were able to enjoy the run-up to Christmas and all the church and family events we wanted to be at, and we had an absolutely fantastic Christmas and Boxing Day, before spiralling into the next phase on January 1st.

2. The fact that the other four children seem to be so very very secure and happy despite what’s going on. Last autumn we had a few tricky behaviour issues, but they seemed to have worked out and they find the situation so normal now that there is no distress or worry involved in me and Richard swapping over. They have spent loads of extra time with our wider families and this has given them lots of changes of scenery and plenty of opportunity to talk to different people about how they are feeling if they want to. Scooby is frequently talked about – in fact, Turtle always assigns him a role when they play games: ‘I’ll be the cavalry/expedition leader/iguanodon, you’ll be the infantry/scout/allosaurus and Scooby’ll be the archer/cook/pterosaur....’ – even though he’s not there. He is prayed for, asked about and talked to on the phone, but they rarely get upset about the situation. Although their scattiness and ability to zone off into other worlds drives me mad sometimes, I am never more grateful for it than now.

3. The fact that Scooby got an infection in his hand on New Year’s Day which meant he was taken into hospital and had his bloods done daily which gave them a record of unusual activity. The fact that although he was sent home, Richard’s instincts told him to get him down to Manchester straight away (despite his tearful wife saying ‘But we’ve just got him home from hospital – I don’t want to take him back!’). The fact that although there was nothing urgently wrong, the doctors decided to repeat all the tests just in case, even though they’d been done many times before without showing anything conclusive. The fact that our amazing immunologist knew to look for HLH because his haematology buddy was a leading specialist on it, which is such a fast-acting and rare disease that every week makes a difference when it comes to diagnosis and treatment. I still can’t get over all this.

4.  The fact that we decided to home educate them all this year before we had a clue what was going to happen. We made the decision when Scooby was still mainly at home and running around, and so we pictured it very differently, but it has turned out to be the right thing for lots of different reasons! We couldn’t have smoothly managed the two weekly swap-overs, including all the times we were stuck in traffic, if we had to factor in school pick up and drop off times as well as two pre-schoolers. This way they’ve been able to see their brother once or twice a week until the isolation regulations kicked in, and we’ve been able to use our support network in Preston to look after them when we haven’t been able to take them down. I have loved that being at home means being absorbed in whatever topic we are doing instead of the stresses of getting them in and out of the house and having to face lots of people on the worst days when I (and the kids probably) just wanted to think about anything other than what might happen.

There are more, but those are the ones I have been dwelling on this week. Tomorrow I will drop the kids off with my auntie and go and have dinner with my husband before he heads back up for a well-earned rest, and I have a day and a half to gather my courage before it will be time to change those bandages and I have to face what my boy is facing.

So glad we are never alone in this. 
So glad there is always a way through all circumstances. 
So glad He has gone before us. 
So glad all things work out for good, even if it takes us a long time before we understand it.


  1. Hindsight is a wonderful thing (praise God) but if He gave us foresight we would make a much worse mess of stuff than we do already

  2. You're all coping amazingly well Esther. I think focusing on the good makes you realise how much worse things could have been in any situation, and makes you grateful for small mercies. I can't imagine how difficult it must be to stay positive and focus on the end goal when you have to endure watching him suffer like this, but you two are amazing parents and you're getting him through this with such strength and adversity. Allow yourself the bad days and the tears, that's to be expected and you wouldn't be real people if you didn't have these moments. Sending you all love and hugs, especially the man himself xxx

  3. Praying with you and standing with so many others to hold your arms high in this battle.
    Isaiah 40:28-31
    Do you not know?
    Have you not heard?
    The LORD is the everlasting God,
    the Creator of the ends of the earth.
    He will not grow tired or weary,
    and his understanding no one can fathom.
    He gives strength to the weary
    and increases the power of the weak.
    Even youths grow tired and weary,
    and young men stumble and fall;
    but those who hope in the LORD
    will renew their strength.
    They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

    Love you all so much!! xxx

  4. We think of you often, pray for you daily, check facebook for updates so that we can pray specifically and your blog...well we are so blessed to read your honest words. xx

  5. Don't know what to say ~ you and your family are so amazing! You continue to be held in our continually in my prayers ~ really I think about Daniel SO often and pray for him every time I do!! God has a plan for your little man ~ and an army of pray warriors behind him. Many ((hugs)) and much love. Cx

  6. I'm so sorry to hear everything your family is going through. Praying for you all and that you keep your eyes fixed on Jesus. Your faith is such an example and encouragement. I find these verses really encouraging:

    'God is our refuge and strength, an ever-present help in trouble.
    Therefore we will not fear, though the earth gives way and the mountains fall into the heart of the sea, though its waters roar and foam and the mountains quake with their surging. There is a river whose streams make glad the city of God, the holy place where the Most High dwells. God is within her, she will not fall; God will help her at break of day. Nations are in uproar, kingdoms fall; he lifts his voice, the earth melts. The LORD Almighty is with us; the God of Jacob is our fortress'.
    Psalm 46 v 1-7

    Becky x

  7. Please Lord make him better x


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