Day 18 and A Re-Post

A quick update:

Scooby is so much better than he was last week. The disorientation, the moods, the anger and the panic have gone and he is back to how he was a few weeks ago – a subdued and sleepy version of his usual self. He’s sleeping at nights and awake enough in the daytime to do a few more activities – listening to stories, having a conversation, doing a tiny bit of physio, etc. He’s off the IV painkillers (ketamine and morphine) and although it still hurts when we change him as the skin hasn’t yet properly healed, he’s as willing as we are not to go back on the medication that made him slightly psychopathic.

However, as always seems to be the case, one problem has been replaced by another. Last week he had a couple of scary looking bleeds into his nappy. We went to change him and it was full of dark red jelly clots, each about the size of 5 or 10p, but both times it was while he had a low platelet count, so he was given plenty of platelet infusions to try and keep them at bay. We thought the problem was over until he started bleeding again last night and wouldn’t stop. Then this morning his stomach suddenly swelled up to twice its normal size, and his platelet count was fine, which indicated something else was going on. Lots of doctors got involved and although scans seemed to show a perforated bowel, they weren’t happy with this conclusion as he didn’t have any of the other symptoms to go with it. Out haematologist told us that there is an extremely rare infection that may be causing it (to which Richard replied ‘Extremely rare? That’s our speciality - that’ll be it then!’) so he is researching it further and treating him for it while we wait for test results to come back. We really hope it’s something that can be treated with medicine as Scooby is too early post-transplant to be operated on.

So in the meantime, while we’re on the topic of unpleasant bodily emissions, to lighten the mood I thought I’d repost an entry from my old blog, from December 2008 when Turtle was 6, Scooby and Ace were 5, and Rocky was still known as Baby. Who knew back then that we were just being prepared for even more drama to come?
Sunday 14th December
We woke up this morning rather rudely to vomit. Ace got into our bed and announced "I feel shick."
There are good reasons why I allow used coffee mugs to linger in our bedroom longer than deemed normal and this was one of them. I caught it all [smug face].
We were then faced with that parental dilemma - do we now quarantine him to save the others (who probably have it in their systems by now anyway) or do we let him roam free and assume it was phlegm based, (as is usually the case in our house)? We waited for the rest of the morning and nothing else unusual presented itself, so we assumed he was okay. In fact he was so okay that he managed some very successful wrestling with his brother, which ended with an unintentional headbutt and Scooby's nose exploding. This fortunately happened just as I was approaching Scooby to wipe his nose so I got hold of him before any blood hit the shirt (successful catch of the day number 2). Unfortunately (and embarrassingly) I was not approaching him with a tissue in hand as one might think, but, due to an empty tissue box and a knack of resourcefully using the mess my children leave on the floor, I was actually about to wipe his nose with a sock. Yes, I collected my son's bloody emissions with his own used sock. And after a while, its pair as well.
Once the bleeding had stopped, we decided Ace was probably okay to go out as he had been bouncing off the walls all day and so we braved it to church. We were right, he was fine. Baby, however, was not. One minute he was toddling around in the main room where we were doing Sunday School with the kids. Then he was pulling faces at the adults having their discussion meeting through a glass door panel. The next thing he was spewing forth all over the door, the carpet and himself. This was not a successful catch - I was in a tidy room with no used receptacles and no verbal warning at all. My friend Catie and I managed to clean up the mess and Baby toddled around semi-naked for the rest of the meeting. His was also a one-time thing and he showed no symptoms before or after that.
No, it doesn't stop there. A couple of our friends had come up from Preston to see our church so afterwards for a change we decided to get an Indian take-out. I am no Indian connoisseur and so I just ordered one korma for me and another for the kids to share, because I know that it's not spicy - but that's as much as I know. Half way through the meal, Turtle started making agonised noises, gurning and holding his throat. Uh oh.
'What's up?' I said.
'Nuts!' he started wailing. 'I've had nuts! My throat is itchy and my ears hurt!'
I started searching round the table, looking at the naam bread, pittas and everyone else's meals.
'You can't have had nuts, there aren't any here.'
'They're in me! Get them out! Waahh!' (I know he will win an Oscar one day)
'Did anyone get a meal with nuts in?' I asked around.
Blank faces stared back at me and then the bravest of our friends spoke up.
'Erm, you did.'
'Korma has almonds in it.'
I ran to the kitchen and fetched water and Piriton and got Turtle to drink down as much of it as possible. Then I had to go and make him a weak cup of tea since the first time he had an allergic reastion I lied to him convinced him that having a cup of tea would make him feel better (I was desperate for something to distract him and didn't know what else to do - tea always seems to cure all my problems anyway). He drank the tea and then doubled it all back into his bowl, along with the half-eaten korma. That was the third successful catch of the day, but my victory was somewhat overshadowed by me shrieking at the poor guests; 'Don't look! Shield your eyes so you won't be able to see! Save yourself from the horrific sight!' or something similar. We managed a quick clean up and shunted the other three off to bed, had a polite coffee with our guests (who are currently childless and we think after today, may permanently choose to remain so), said goodbye and then made it back into the house just as Turtle brought up what was left of his guts onto the dining room floor.
So this day was less than perfect. Yes, I did get lots of cleaning done, but not really the kind that progresses you any further along than you were before. And I did spend a lot of time with the children, but none of it was what you might class as 'fun' activities.


  1. Oh the days of sporadic vomitting. Here's hoping you'll be back there soon Esther with nothing to worry about but 24hr bugs and the odd skid mark.

    I'm thinking of you all and hoping that this latest battle is nothing too serious. Glad to hear he's more himself too, the temporary psychopath must have been a little scary. Give him a kiss from Sam and love from us all x

  2. thinking of you all. Just found your page. My son aged 13yr is 6 months post BMT for HLH. I read your pages with a lump in my throat- the similarity was startling. Alot of what you and your family have been through we understand- my daughter was a match, a good match and this resulted in less complications post BMT. We are being treated in Alder Hey hosp, Liverpool. My son is now doing great, weaning off his tablets, up and walking again. He too had alot of muscle wastage and was in a wheelchair.
    Im hoping and praying that as the days go on things will improve. xx Mandy Giddins .N.Wales

  3. Hi I am Stephen Collins of Beyond Imagination Ministries in the UK. We are a small charity that has a webpage in Facebook that specifically is set up for prayer, its called, Wave of Pray - I am letting you know that I have put your blog link on this wall.
    Be very assured of our prayers and thoughts at this time. We know that the power of prayer is awesome, be assured that the Lord will be close to your heart and that you are all held in prayer at this difficult time. God bless you. Stephen


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