2 Cor 12v9

Tuesday, 27 March 2012

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However, as always seems to be the case, one problem has been replaced by another.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.'
'What?'
'Korma has almonds in it.'
'WHAT?'
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.

Friday, 23 March 2012

Two Weeks Post Transplant

As predicted, this week has been a very tough one. The skin around Scooby's torso, neck and arms is just starting to heal up now, but on his lower body it is still very raw. He has been catheterised to keep urine off his skin but he still has diarrhoea which hurts on his broken skin and when we keep having to wipe the same areas over and over again to get it off. 

Over the weekend the mucusitis in his mouth, throat and stomach was so bad that he couldn't talk and he struggled to breathe properly. They decided not to intubate him as it would mean moving him to ICU and compromising his isolation precautions. Instead they turned down his morphine (which can hinder breathing) and added some ketamine to help with pain instead. 

Thankfully by Monday he was able to start coughing and by the end of the day his throat was much better. The little whispers that he'd been struggling to force out on Sunday became real words and suddenly we were projected into a new phase. The 'I want a...' phase. 

Presumably as a result of the Ketamine, his mind started running overtime and for the last five days he hasn't been able to settle at all. He is fixated on certain things, from wanting to go home, to wanting certain visitors, to wanting to stop himself from pooing so it doesn't hurt his bottom - all of which are perfectly acceptable things to want when you're eight years old and have spent thirteen weeks in hospital - but he is asking for them repeatedly, robotically and very loudly, at all hours of the day and night. He is obsessed with asking what time it is, so that he doesn't miss the Mr Men show at 7:20 every morning, but by far the weirdest thing he will not let go of is his persistent request for an ambulance. Every doctor, nurse, cleaner, physio, visitor and support worker gets begged several times whenever they come into the room and no amount of explanation, persuasion, firm telling or ignoring will make it stop. At approximately 200 requests a day (yes, that's how hard I am trying to fill my mind with constructive activities!) I think we may have just passed our thousandth time of the same question. He only seems to be able to sleep for an hour and a half at a time before waking and frantically asking all the same questions again. The ketamine was taken down a couple of days ago, but his erratic behaviour continues, so we don't know if it triggered something, or is still in his system, or whether it is sheer frustration at his situation that is driving him.

The worst thing about it is not the incessant questions and howling in the day and night, but the fact that he seems so very unhappy. He hasn't cracked a smile or joined in with any of the activities he usually loves all week. He asks for things then dismisses them straight away, and yells at people when they try to help him. Even his sweet talk with the nurses ('You're my favourite nurse... Please don't leave me!') is a strategy to try and rope them into joining him in his escape by ambulance plan!

So that's the ground level, on the surface stuff, which is pretty overwhelming this week. The underneath stuff however is still good. Organ functions are all still high, and his neutrophils are up high enough to show that engraftment is already taking place, which is early, and a very positive start to his post-transplant recovery. So we will keep going, slogging it out and patiently answering the same questions another thousand times until he starts to feel better and turns back into his usual perky, resilient self. But a little prayer for sanity (his and ours) wouldn't go amiss in the meantime - thanks.

Wednesday, 14 March 2012

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.

Saturday, 10 March 2012

Day Zero


It is done – the bone marrow in one of our boys has been completely destroyed, and replaced with bone marrow from his brother. I don’t really get it – it’s too mahoosive for my non-medically-trained brain to deal with, but that’s what we have been told has happened.

It was all very straightforward and understated, as we expected. Rocky arrived on Thursday, and for him the biggest trauma was having a cannula inserted into his hand, but once it in, it was all forgotten about. His bloods were taken and he was weighed, measured and checked over for his basic stats. The nurses had done a little bit of undercover manoeuvring to ensure that the room next to Scooby’s was kept free (as there are only seven beds on the BMT ward and patients fill them for at least two months at a time, this was quite an accomplishment!) and this made a huge difference to Scooby, as he is so homesick and desperate for any time with family members as possible. Instead of Rocky having to stay in his own room for meals and observations, he spent most of his time with Scooby, and Scooby soaked up every minute of it.



They ate and played games together and we all watched a movie (Despicable Me) then went to our own beds. The next morning Rocky was first on the surgery list and went down fine. The anaesthetists were fantastic and so fast at putting medicine in his cannula while distracting him that he had no time to panic. Our consultant himself carried out the procedure and made small rows of biopsy sites along both sides of the pelvis. He had assured us in advance that the amount taken was dependant on the mass of the donor, not on the needs of the recipient, so that he would only take a small enough percentage of Rocky’s bone marrow that he wouldn’t feel ill or need any blood replacing. As Rocky is smaller than Scooby this would mean that he would have less than the ideal amount to start with, but eventually the cells would reproduce inside his body to the correct amount so it would just take a little bit longer for the process to happen. So Rocky’s marrow was sucked out and then the area was anaesthetised so it didn’t hurt once he woke up.



His recovery was quick and straightforward and helped by complete uninterrupted access to the iPad for the next few hours, including Angry Birds Rio which was the thing he had wanted more than anything else. He was kept on fluids until he started eating and drinking and holding it down, which happened soon after, and so he and the iPad spent the rest of the day in Scooby’s bedroom.

A few hours later, the bag of marrow arrived back, having been checked for usable cells and having had all the red blood cells removed (as they are a different blood group) and was transferred through Scooby’s central line straight into his body. It took thirty minutes during which we just stood and stared at every last little drop going through. Later Scooby asked when the rest of his ‘Bow and Arrow’ transplant was going to happen and couldn’t quite believe that it was over without him actually feeling anything!



When the consultant came in later he was ecstatic to tell us that thanks to his accuracy in surgery, and some expert precision by the lab workers, the amount of usable cells given to Scooby was actually much higher than expected and rather than it being less than the recommended amount for the recipient, it was actually more which will give him a head start!

Once Rocky’s blood count was taken, he was freed of his cannula and discharged to go home. So Richard stayed with Scooby while I drove Rocky home in the new car which Richard had spent days acquiring from Scotland as our family car had been laid to rest the week before.

So it is done – the act which quite possibly could mean that Scooby’s deteriorating disease is gone forever. Whether it will work, and whether the damage it has left behind is irreversible, we won’t know for a long time, but we know we have given him the best chance possible of it happening.

After a very long time of feeling like we were tumbling down a steep slope – sometimes stumbling, sometimes pausing and sometimes freefalling with no idea how hard the final impact would be – it feels like we’ve hit the bottom and today woke up to start the ascent back up the side of the mountain.

I especially love that when Richard asked Scooby what he wanted to do today, he thought about it and said ‘I want to go out onto the walkway (in the middle of the hospital) in my wheelchair to the end, and then I will try and walk back.’ Richard had to explain that not only could not leave his room for several weeks, but he wouldn’t be able to walk for a while as his body hadn’t been walking for months. Scooby was a bit disappointed, and wanted to at least try standing by the side of the bed to make sure. When he realised his legs couldn’t bear weight, Richard explained he would have to try and retrain all his muscles to work again and so Scooby  is now determinedly doing all the exercises that the physios have been doing with him in the last few weeks. He has taken what we said literally – ‘After the bone marrow transplant, that’s when your body will start to get better again,’ and decided to make it so.

He gets it - the old destructive elements in his life have been destroyed. A sacrifice has been made, blood has been given, and his life has begun again. He knows he’s not all he’s going to be yet and there’s going to be some painful processes of letting that new life taking over every area of his body, but doesn’t want to stay where he was and he wants to start putting this new life into action until he becomes all that he can be, focusing all the time on the goal of going home.

After receiving a day zero in our own lives, why would we ever want to look backwards ever again?

Thursday, 1 March 2012

Step Two


It has begun – we are now into step two, where we are going to destroy our child’s vital life-producing marrow forever. It feels very very weird that we have now started an irreversible process and in a week’s time, it will be replaced with someone else’s.

Here’s some interesting stuff we found out this week – Scooby and Rocky are different blood types. You’d think that having the same type would be the number one thing on the list of things that needed to match,  but apparently it’s a secondary issue that they can sort out, and so after the transplant, Scooby will change from O+ to A+ (like me). And here’s another thing – Scooby will then have two different types of DNA in his system. His blood will continue to carry Rocky’s DNA, but all his other body tissue will carry his own original DNA. How crazy is that? That’s a crime novel waiting to happen right there.

We haven’t told the kids yet that they won’t be able to see each other for at least a month, possibly longer. We’re just going to take it a week at a time and tell them it’s not time yet. Only Richard and I and two other named people (my mum and dad) are allowed to come into contact with him and we need to be ultra-careful not to let anything pass to him. He’s been neutropenic before, but never at the severity where his immune system doesn’t even exist. Even once the total isolation has lifted (once the bone marrow has begun to engraft), he has to be on a really restricted diet for the next six months – a ‘clean’ food diet, which involved mainly fresh ingredients with sources that can be traced to make sure there is no chance of contamination at all. So all the little bits and pieces we bring him from outside the hospital, like strawberry milkshakes, Quavers crisps and the occasional Happy Meal, will not be allowed.

The first two days (yesterday and today) have been about destroying the T-cells in his body, and he had a reaction to the first dose and needed to be put on a nebuliser for the rest of the evening, but as with most reactions to this medicine, it passed and he tolerated the second dose okay. Unfortunately, for the third day in a row, his seizures have made a comeback and he’s had about three a day without any clues as to why. As he physically deteriorates in the next week, we really hope and pray that they will subside, as his poor little body will be going through enough already.

On the plus side, we got to enjoy being all together on Saturday for Baby’s second birthday. We’re pretty darn good at hospital parties by now and we had lots of fun with music, dancing, games, bubbles, presents and a movie. A good way to celebrate Scooby’s period of respite between the two treatments, and our baby not being a baby anymore. She had a great time there and with the extra relatives she got to see on the way home, and today she even began a new song she made up which consisted of the lyrics ‘Birthday to you again!’ One of her presents included a photo book for her of family members and friends because she loves books and people and now she can sit and chatter to herself to her heart’s content: ‘Ooo’s dat? Auntie Beth! Ooo’s dat? Uncle Phil! What’s Daddy doing? He’s weeding a book to me – that’s me!’ :)