2 Cor 12v9

Monday, 30 January 2012

Two Weeks Down, Six To Go

The last two weeks have been incredibly tough. Scooby has been extremely sleepy – even during the few moments that he’s been awake, he’s been so lethargic and heavy eyed that he can hardly interact at all. He can’t hold his head up when the back of the bed is raised, so it lolls to one side and the only movement he makes is to roll over a quarter turn, but sometimes he can’t manage that unaided either. He hasn’t been using his hands at all, and he can only chew three mouthfuls of a meal slowly before giving up. He’s not his usual sparky self at all and seems very confused at times.

This is partly to be expected – apart from the fact he already had minimal movement because of the disease, he is also on more than twenty different medications ranging from twice a week to four-hourly, and he is completely neutropenic, which means he has no immune system whatsoever. His blood is tested every day for traces of infection and each time they find one they have to give him a different type of antibiotic to control it. His blood platelets keep dropping so he’s had about four infusions now to bring them back up. He is also suffering severely from diarrhoea so he is loosing his natural salts and phosphates. He was being fed by a nose tube, but they have now switched his nutrition to IV intakes through his line, and are giving him phosphate infusions too. Even so, the doctors have been surprised at just how much sleeping he is doing.

He’s also had other unexpected symptoms – high temperature for almost a full week, dips in his blood pressure, high and low pulse rates – almost as soon as one thing gets under control, another thing arises. While he’s slept away the rest of us have been on our toes, desperately trying to keep things balanced on his behalf!

The one thing that has remained calm during all this is his seizures, which has been unexpected - he’s only had about three in this two weeks. It may be because he’s hardly moving at all, but we are all glad that even when he wakes and is distressed, he’s not having to deal with that. The other good thing is that he hasn’t been sick from the chemo even once, and considering he struggled with reflux until he was about four years old, this has been a pleasant surprise.

This weekend things have been calmer. His temperature has stayed down, his other sats have been normal, and he has been awake slightly more. Unfortunately most of his wakeful times are dominated by the constant nappy changes he needs, which are extremely painful due to all the toxins that are coming through his body, combined with the diarrhoea.  As well as causing him distress, the raw skin is difficult to keep clean (and can’t heal quickly due to his low platelets) and so we’re worried about infection there too.

Things at home have been ticking over okay. Me and Richard divide the week into two, so I am home Monday to Thursday to keep the homeschooling going while Richard can be at the hospital for the Big Decision Days which we now know seem to happen at the beginning of the week. On Thursday afternoons the kids get to see their brother for a couple of hours then Richard brings them back so he can be around for the weekend for church (although he’s currently having a few weeks’ leave) and I can do the Waiting Around Days in hospital, which I don’t mind. We swap again late on Sunday night, and since Daniel’s been less able to interact we’ve started dropping the other kids off with family so me and Richard get a couple of hours together to see each other face to face. Coffee in the parents’ room and eating a Chinese between cleaning up soiled bedsheets doesn’t make the romantic of date nights, but it’ll keep us going for now!

The other kids are thankfully pretty oblivious to the severity of the situation, because they are so used to the hospital split weeks by now. I’m more glad than ever for the homeschooling because we can base the weeks’ activities on our capacity, and it’s so good being able to throw myself into something else instead of being overwhelmed with one thing all the time. There are no alarms set for the morning or deadlines to rush them into the car for – I get up when Baby does and we slide into our pattern of warm-ups and workbooks, followed by our Arctic and Antarctic topic which involves making paper snowflakes, learning survival techniques, watching internet videos on precipitation, freezing and melting different liquids, learning about the earth’s different climates and its angles to the sun, etc. And if it’s a tough day and I’m running on empty I wait till Baby has her nap then I take one too while the boys watch episodes of Frozen Planet. I have a different person for each day that I’m home to come and help for a couple of hours so we can get more done between us or I can retreat with the laundry for a bit if needed.  On Richard’s days at home he takes them out and about, to historical sites or to the zoo to see the creatures they’re learning about, and this makes sure he keeps up his favourite parent status.

So this is how we are coping for now – we are plodding, focusing on each day at a time and trying to keep things as smooth as possible. If things get worse for Scooby and we both need to be closer, we will take the others to Preston to be with family, but while things are uncertain, we are going with the flow and keeping them protected from the worst.

And in the theme of being protected and carried in the worst of times, I wanted to share this song which I must have listened to about a hundred times this week. It sums up our journey so far (you have to use a cliché before you play a heart-wrenching song – it’s the rule) and exactly what our Father has been doing for us, written by another parent of five kids who has suffered loss. Definitely worth buying the album for.

Tuesday, 24 January 2012

Praying and Hoping

I keep saying it, but I am absolutely BLOWN AWAY by the way people are responding to what we are going through. Friends who are spreading the word, and using their time and emotional energy to intercede on our behalf; churches who are allowing our situation to be the highlight of their prayer meetings and weekly prayer slots; strangers who are joining the Facebook group to pray and fast for us just because they’ve seen links and taken time to follow them; children who have decided to give up their favourite things (including eating pizza and wearing odd socks!) to remind them to pray for Daniel; and non-believers who are putting their own doubts aside to sneak prayers up to a God they’re not even sure about.


I mean, we’re just one family, and he’s just one sick kid. There are many many more in the world, but for some reason people are gathering to get behind us and support us through this dark time. In some ways it seems unfair – I keep thinking of people who lost their children in an instant, with no warning, or those who only had a few minutes or hours to watch their children die, with no chance of a prayer meeting being set up or a Facebook group formed. I keep thinking of big groups or countries of people who have lost children to famine, war, genocide or disease, and there were too many names for people to pray for them individually. I keep thinking how we have four other healthy children, and that we’ve had eight incredible years with Daniel, and some people never even have the chance to have one child, or have struggled to keep their children alive and then have had to see them all wiped out in a single blow.

I keep thinking that if we lived in a different country, or a different decade, or had even ended up in a different hospital, we would have lost Daniel a long time ago.

We are already blessed beyond belief.

I don’t know why people feel inspired to pray for our boy. We don’t deserve any kind of special treatment. In fact, there are many times when I pray and I ask God not to look at any merit Richard and I may have, because I know we would fall so short. I ask God to look past all our failings, and Daniel’s too, and just ask for mercy on our situation, because that’s the only reason we can even ask. It’s nothing to do with what we’ve done, and everything to do with who God is.

It’s completely up to Him if He heals Daniel. It will not alter my faith or my perspective of Him. It will not stop me from wanting to help other people to find Him, or from leading church. It will not make me ask ‘How could You?’ or to doubt that He is any less loving or any less powerful. I know without a doubt that He could heal Daniel in an instant, or gradually, because I know He works miracles. I know that Daniel’s future is in His hands and I trust Him completely. If in eight years He has accomplished in Daniel’s life everything he was born for, then I hold my hands open and refuse to try and manipulate or threaten Him, because my main desire for all my children is that they serve and glorify God with their lives and if this is God’s plan for Daniel, then that is more important than any plans I could’ve had. After he and Joel were born I spent several hours in tears asking God why the heck He thought I could handle twins and telling Him He must have made some sort of mistake. After a day of that, God stopped me in my tracks and told me in no uncertain terms that there was no mistake, that He had planned those boys from the beginning of time, with me and Richard as their parents, because He had a purpose for their lives, and I was to give them the middle names of Joshua and Caleb because they were going to be men of different spirits (from Numbers 14). I had to give up their futures to God right there and then, and I will not take that back now.

Of course I’m asking for a miracle and I won’t stop asking. Whatever happens, I will need a miracle. If he is fully healed and can walk again, that will be a miracle. If he dies and I have to get up every morning and carry on with my life and bring my children up in the way God wants me to, I will need a miracle. And if Daniel survives this next two months but continues to be disabled like before, then I will need the biggest miracle of all - to set aside my many lazy and selfish desires every single day to keep giving him the specialised care and attention he needs. He is the God of miracles. He has new ones every morning. He has given us everything we have needed in the last two years – strength to fight, peace to rest, inspiration to keep moving forward, grace to cover our mistakes, hope when things were dark – I could go on and on.

Thank you all so much for your prayers. I am sure that yours are far more eloquent than mine. Most of the time mine are just little whispers – ‘Please, can we keep him?’ – so it gives me great comfort to know that there is an army of pray-ers out there who are using a vast array of different words and styles and biblical truths.

And if you are praying, I want to promise you something. If you are opening your mouth to God, whether it’s to whisper or shout, to speak His authority over the situation or to praise Him, to quietly listen or to spill your anger at the way He chooses to do things; I promise you, it will change you. It will bring you a step closer to God. It will release things in you that need releasing. It will bring you closer to the answers to your own hopes and dreams. I know this because I have asked God why it should be that we are hogging all this prayer, and this is the answer He gave me. God is using Daniel to stir people’s hearts, to challenge them, to open their mouths, to put faith in something they didn’t believe in, to put aside things that are often in the way to spend time with their Father who loves them, and to open doors of communication with Him. There is nothing, nothing, NOTHING in this world like knowing the God who created you, and if Daniel’s story has made you spend time with Him – for a minute, or day, or for forty days, then this is all worth it.

And that is why, with shaky hands and lots of tears, I can say I COMPLETELY trust God with my boy.

Tuesday, 17 January 2012


So we’ve been given a diagnosis.

Kind of.

It’s a diagnosis for what is happening in Scooby right now. Just before Christmas he was due his fourth chemo infusion but he couldn’t have it because his platelets were slightly low. We went back the next week and they were still low which put the doctors in a quandary about what to do. The plan was to try again the week after but on the 1st January (I know – what a great way to start the year) his hand became red and swollen. We took him into the local hospital and he was treated for cellulitis. He came home on Jan 4th (Turtle’s birthday) but a few hours later had a soaring temperature.

Richard got one of his feelings that things weren’t quite right, and as his intuition on Daniel’s condition has been 100% right so far, we decided to skip the local hospital and take him straight down to Manchester. Within a few days more soaring temperatures, even weirder blood results and an increase in seizures told us he was getting worse again. The decision was made to stop the chemo, and we were gutted. We’d pinned our hopes on it and now we were back to square one. On the two year anniversary of his first hospital trip, exactly the same investigations were being repeated yet again. Blood tests, organ scans, lumbar puncture, MRI, bone marrow sample – he was given the works. But this time they found something that wasn’t there before. All the symptoms added up to something.

Richard rang me on Thursday – the day we were due to swap over anyway and told me to be down in Manchester for a meeting for a possible diagnosis. I couldn’t get down there fast enough but I didn’t dare hope just yet. As much as we’d wanted a diagnosis, there had always been an element of hope in the fact that nobody had ever said the words ‘terminal’, ‘incurable’ or ‘degenerative’ to us yet, and although this time (as well as the previous time in September) I was preparing myself for the worst, I still didn’t want to hear it said by someone as fact.

Our consultant was able to tell us what he knew that evening, but we had to wait until the next day with the other specialist to get the full picture – which gave us time to Google the condition (is that a bad thing or a good thing?).

And this is what we know now. Scooby has a rare condition called HLH - hemophagocytic lymphohistiocytosis. It’s a 1 in 1.2 million people disease, but even then Scooby is showing an unusual form of it so I guess he’s even rarer than that! It’s a blood disorder where the immune system attacks cells it’s not supposed to:

 ‘HLH results when critical regulatory pathways responsible for the natural termination of immune/inflammatory responses are disrupted or overwhelmed. In HLH, pathologic genetic defects alter normal crosstalk between innate and adaptive immune responses in a manner that compromises homeostatic removal of cells that are superfluous or dangerous to the organism. The result is excessive and persistent activation of antigen-presenting cells (histiocytes) and T lymphocytes’.


It’s usually genetic but as Scooby was not a baby when it started, he must have the acquired form of it. What is not clear is whether this has been the problem all along or whether some other disease, or even treatment, has caused this to develop. So we could be treating the mystery disease that’s plagued him for the last two years, or we could just have a new problem on top of the old one.

The treatment for HLH is aggressive. Once it’s found, it needs to be treated immediately as it’s usually fatal. For the next eight weeks he’ll be on new steroids, immuno-suppressants and chemotherapy – the ‘real’ stuff this time, not the very mild form that he’s already had half of. He’s now on the oncology ward and we’ve been told to prepare ourselves for a tough time. He’ll be in for at least four weeks, then the treatment halves and I think there might be the opportunity to bring him home while he has the rest. Also by the halfway stage we should know whether or not it’s working. If it is, then we will go through the process of finding a blood marrow donor, so that once the treatment is finished and the disease is eradicated, he would start from scratch with someone else’s immunity.

We asked what would happen if it wasn’t working. There is no plan B.


So we are starting a whole new phase of this thing. We’ve watched our boy be poorly in varying degrees for the last two years, but we are now into unfamiliar territory. A new ward, a new group of doctors, new medicine that for the first time we haven’t even asked the name of or wanted to know the long-term side effects of because we just want to get it into him before it’s too late. He’s had a central line put into his shoulder which, instead of being traumatic like it would have been a year ago, is a welcome relief from the many many cannulas and individual needle pricks that have riddled his body. No more bruises, just instant access in and out all the time. He’s also started with blood transfusions as he needed more platelets and plasma before he could even go into surgery to have the line put in, and he will be needing more transfusions as he goes along, so to anyone who has ever donated blood – THANKYOU!


I am so so grateful that our amazing doctors found this. I am so so grateful that he is being treated  eight years after the case studies and the agreed treatment for HLH were completed and were made known to medical practitioners everywhere. I am so so grateful that Manchester Children’s Hospital has one of the top haematologists in the country who has had involvement with 60% of all known cases of HLH in the country. And I am so so grateful that we had a fantastic Christmas at home all together before facing this next giant.


And I am so so afraid. I am afraid that after two years of disease working its way through his brain and slowly wearing down the rest of his body, that two months of aggressive treatment might be too much for him to handle. He’s starting this battle at a point where he can no longer walk or use his hands, and is even struggling to hold his own head up now. He is sleeping nearly twenty hours every day and has very little appetite. His speech is slower and his eyesight is weaker than it was just two weeks ago. I want to be strong and to say firmly that we will handle anything the next few months throw at us, but after two years I am battle-weary too and my coping capacity is wearing thin. Fear seems to have displaced hope and is taking over all my internal organs.


But I know I am not doing this alone. I don’t know how all this will turn out but God has been talking to me through Hebrews chapter 11, how faith is not knowing what will happen, but trusting in the One who will make it happen. It’s also about people who didn’t see what they hoped they would see in their lifetime, but who were part of a bigger plan. Some saw miracles and some didn’t. Some saw the fruits of their labour and some didn’t. I am hoping and asking to see our miracle but trying to keep my eyes on Him who is bigger than the miracle.


And as always, we are so amazed by all the people who are taking time to think, hope and pray with us. After two years people should be sick of the ups and downs and the continual requests, but still they are contacting us and wanting to know what to pray. I am blown away by the amount of people who let us interrupt their prayer life, their church meetings and their daily thoughts.


My friend Jacqui has set up a group to pray and fast for forty days for us. Obviously we’re not asking anyone to give up food for forty days, but maybe if enough people feel called to do it, there could be a different person fasting food each day. Or something else – TV, chocolate, etc. It’s here at http://www.facebook.com/events/278897825505045/ if you would like to join or get more information.


2 Corinthians 5v7: For we live by faith, not by sight.