Tuesday, 1 February 2011

I don't like Mondays...

Monday sees us at the Birmingham Children's Hospital again for a meeting with Dr. Martin English (Joel's oncologist) and Dr. Dan Ford (Radiologist) to discuss Joel's treatment regime.

Dr. Ford is fantastic with Joel - very down to earth, charming, funny, and really puts Joel at ease..  I guess it's because he deals with so many children, but you forget that and think that you're the only child he's ever dealt with...

Dr. English is amazing too - explains things very well, so I'm not expecting what hits us in this meeting.


It's explained that Joel will need a course of radiotherapy every day for 6 weeks (8 cycles!) - and at least once a week, a dose of chemo as well.  That means trips to the Queen Elizabeth hospital AND Birmingham Children's Hospital for quite some time..  The thought of the parking bill frightens me.  Thankfully, they say there is a free car park next to the radiology clinic.  Relief!

Then Dr. English tells us about the chemo..  he reels off the names of the chemicals and why they use those particular formula as opposed to others..  he's very thorough.  Then he comes to the side effects.

I expected hair loss.  No big deal..  it'll grow back..  maybe curly next time..  but at least Joel can wear a hat.  I knew about stunted growth, but that's treatable with growth hormone...  although Dr. English said that there can be a 1-2 inch shortness in the torso, while the arms and legs grow at their normal rate..  but that's hardly noticeable.  I have trouble finding clothes to fit me anyway, so it can't make it any worse for Joel when he's older.

Then the bombshell I did not expect.


It's likely that he'll be infertile due to the chemo.



I'd never thought about it.  Louise said she expected it - I'd not seen it in anything I'd read.  She said it's usually in very small print.  Dr. English said that given Joel's age, it's too early to take a sperm sample now for storage to be used later...  but possibly in 20 years with the progress of stem cell research, they may be able to generate some from tissue - but at the moment, it's unlikely.  For now, he can't have children.

That came as a kick in the teeth.  He might not want children..  some people don't do they?  But my god, what if he wants them?  I've talked to him so many times about when he grows up and has a family of his own, how much he'll love them - and then understand how much we love him...  as a child, you never understand how much your parents really love you until you have kids of your own.  NOTHING else matters in the world except them.  He'll no doubt find a good wife, but will he ever feel that love for a child, the love that hurts so much because you can't explain what it means to them?

When we say to Eve, "Do you know how much we love you?" - she'll say "Infinity".  When we ask how much she loves us, she'll reply "infinity plus 1".  You can tell kids that they could never love you more than you love them..  but they won't understand..  not until they have their own.

I can't bear to think Joel might never have that - and not to know that despite how much I've shouted at him, I love him with all my heart, more than he'll ever know.

Then I realise Eve will never be an aunty..  not by blood at least.  So many consequences..  but what is the alternative?  To lose Joel?  Not an option.  Dr. Ford asks which of us would like to sign the consent form..  I motion to Louise that she can..  neither of us object.. why would we?  We want them to do everything they can to get Joel better..


After the meeting, I think I'm in a state of shock.  I'm pretty numb.. don't really have any emotion..  I feel sad, but I haven't cried.  Louise cried in the meeting.  It hasn't hit me yet.  It will.


It's lunchtime, so we decide to eat at the restaurant at the hospital.  The food is lovely..  Joel has a 'make your own salad' from the deli counter..  Louise has a baked potato..  I go for the steak and onion pie with chips and lots of brown sauce (has to be brown with that...).

We sit and eat, I'm sat opposite Joel.  I look at him and then it all hits me.  I make my excuse to go to the toilet where I cry in private.  Not the most comforting place if I'm honest, but better than a restaurant.  I calm myself and return to the table.  We have a dessert, and again, I break down..  Louise holds my hand and comforts me.  Joel just looks at me and smiles.  What must he be thinking??  Does he understand what we've told him?


We go home, and I fall asleep on the sofa..  it's only for 20 minutes before the phone rings, and it's nearly time for me to go and pick Eve up from school.  On the phone, it's Mrs. Barnes, Joel's form teacher.  She'd like to come and visit him "if that's ok"..  it is - he's happy, he's doing ok, all things considered, so she says she'll make her way here straight from school.

I silently motion to Louise "Is she going to bring Eve home with her???" in a half joking manner..

When we get home, it's not long before Mrs. Barnes arrives.  Joel is playing Angry Birds (as if you wouldn't guess by now), and seems oblivious to the fact his teacher is here..  she's brought him some work that he's missed out on (we encouraged it - not just because we don't want him falling behind, but also because it will cure his boredom..  he's always wanting to be challenged - and it would do him good to get off his iPod for a while!).

She also brings a few presents for him, and a card signed by everyone in his class.  She also brings both Joel and Eve some chocolate.  I try to steal a bit of Eve's chocolate, and she takes it upstairs to hide.  I'll find it.  At least I know which half of the house it's in.

When Mrs. Barnes leaves, I need to go have a rest before I leave for work.  I'm shooting Roxy Music at the LG Arena, and after the problems on Saturday, this will be my first job since Joel's diagnosis.  I'm looking forward to getting back to normality, or as close as it can be..  but I'm also not looking forward to it.  I can't imagine I'll be as chipper with the people there as I am normally.  Truth be told, I think I've turned into a miserable sod in the last week.  Moreso than normal I should add.

I'm at the concert, the second support act is on, and I get a voicemail..  Why my phone never rings when someone is calling I don't know, but I got the voicemail.  I go out into the concourse area so I can hear it, and it's Louise, in a panic, begging me to call her urgently..  She went to move Joel and his bandage was soaking wet..  he's leaking CSF from the wound where the tumour was removed.  I panic..  I rush back to the pit and grab my cameras..  hastily telling Rob, the pit supervisor, that I've got to go...  I call Louise back and she says she hasn't got enough petrol to get to A&E..  She's waiting for her mom to come and look after Eve, so I tell her not to panic, that I'm on my way.  She sounds really flustered.  I get back to the cloakroom, pack my gear and leave.  I hand my pass to the door staff and tell them that I'll try and arrange someone to come and cover the job for me.  Thankfully, they know me well, and I manage to get someone reliable to go and get some shots so the paper won't go without.  I just hope they run a pic so I can afford to pay the guy for covering it for me.

When I get home, I don't bother getting my camera gear out of the car - I bung Joel's wheelchair into the boot, grab the cases that remain unpacked from Friday, and Louise puts Joel into the childseat.  Eve is on the doorstep in tears...  I think she's now realised the severity of Joel's condition.  It's heartbreaking to see her crying for Joel, worried sick about him.

We head to Birmingham Children's Hospital and I follow the signs for the A&E department.  It's a different entrance than the main one, but as I leave Lancaster Circus and follow the directions for the A&E, there are no more signs..  where the hell is the A&E entrance?? I'm then stuck in the one way system around Colmore Row..  I follow a car through the 'no access' area to come back down by the law courts and eventually back to the main entrance area where you can see the A&E department..  but it's no entry to the A&E.. I park on the street to drop Louise and Joel off, in a 'motorcycle only' marked bay..  it's the only space around - all the other on street bays are full, and while I've got a swipe card for the multi storey car park, it's the the other end of this long street, as far from the A&E department as you can get.

Louise heads off with Joel to the A&E, I leave the headlights on the car and run in to the reception of the hospital to see if I can park in the main car park for a bit until I know if they're putting Joel back on the ward...  They say "Well, you can park for 10 minutes on there..."  Great.  Another guy says "Tell him he'll have to use the multi storey"..  Thanks a lot, jobsworths.  There's loads of spaces free on the main car park, but they won't let me park there..  The guy I'm talking to says "Well, it's free on the street after 6 anyway...  "   I thank him, and run back to the car as a traffic warden see's me approaching and asks if it's my car...  "Yes, it is"..  I say.  He insists "You can't park there!" and starts to get his ticket machine out... I tell him that I've just dropped my boy off for the A&E and was trying to find out where to I can park, and he says "Ok, that's fine"..  I get back in the car and drive up the street.. there are NO on street parking spaces available..  so I head to the multi storey..

Fortunatley (relatively), there are spaces on level one..  so I only have to walk two flights of stairs with an overnight case and a holdall..   for ages.  Two lifts, and about 3/4 mile of corridors.  I get to the A&E department and I can't see Louise and Joel anywhere.

I wait at reception and then I see through a window, one of the doctors I'd seen on Ward 10..  I ask the receptionist if that's Joel Sheldon, she confirms it..  looks at my bags and asks if I'd like to go in the room..  As I enter, I hear the doctor say that Joel is going to have to be admitted for a few days, and a scan tomorrow.

He then takes us to the Resuscitation Room..  I immediately fear the worst, but he explains that Joel will need a stitch to close the wound. He removes Joel's bandage and gauze which has been on for about 30 minutes, and it's soaking wet.  He sniffs it, and tells Louise that it does smell like CSF.

I actually feel my legs turn to jelly at that point.. the bandage is soaking wet - and that's the SECOND one tonight after Louise initially became alarmed..  how much CSF was he leaking?  What is the safe level?


The doctor tells us that he'll have to stitch it..  after a bit of prodding, he confirms that it's coming from a channel near the top of the wound.  He wants to use a freezing spray rather than a strong sedative for Joel..  but then they can't find any of this magic spray..  apparently only one bottle exists in the A&E department, so he says that they'll have to do it without any anaesthetic..  two stitches, no anaesthetic, where he's just had major brain surgery.

Joel is very good...  very patient, very calm..  calmer than me I think.  The doctor gives him a 10ml syringe and asks him to try and blow into it..  as if he's blowing a balloon.  I wonder if this is some kind of avoidance technique to reduce pain - but no, it's to force pressure in the head to see where the CSF is leaking from.  This grosses me out completely.  Joel becomes agitated, but as the doctor is threading the needle through his scalp, he hardly winces.

Then the doctor applies a pressure bandage, and wraps surgical bandages around Joel's head - tightly..   Very tightly.  Then another, then another.  There's four or five bandages in total (possibly even six, I lost count) around Joel's head.  His ears are covered, and one eye is being forced closed because of the bandages.  They're taped very strongly to secure them, and Joel is complaining that it hurts.  It needs to.  Pressure needs to be applied to the back of his head where the stitches are , but Joel is in agony.  He didn't cry this bad when he was being sutured without the anaesthetic.  About 30 minutes later, we're back on Ward 10..   Joel is still crying out...  while drifting in and out of sleep...

When I eventually leave the ward at about 11.15 - I still hear Joel screaming in agony outside the ward.  I pity the other people in the ward at having to spend the night with Joel crying..  then I think to myself, they've got it easy.  We've got years of this to come.



  1. Thanks for these blog updates Jason.

    Everyone leaves my head spinning at the amount that you are all going through and its testament to you and Louise at how amazingly well that Joel and Eve are dealing with it all.

    I wish i could say something really profound but lets be honest a sentence without a swear word is a struggle for me;)I have said it before and but you have my number if you need anything just call.
    keep fighting all of you

    Lee (and Ada)

  2. To louise,jason,eve,and espically joel

    i am so shocked to hear about joel, it was only christmas that you sent me card, saying you was going to buy some lego with the gift card i sent you.try and get nurse x next time your lego goes across the floor ha ha.
    Get well soon,wishing you all the luck in the world,love to you all xxxx
    wendy darby
    (mommy patient)