Oscar The Scientist

Happy 12th birthday

Tomorrow my beautiful boy would have been 12 years old......I've got a picture in my mind of how I think he would have looked. I can't believe he is not here, next to me & Ian and next to his brothers. The world seems an evil place tonight. Tonight I won't pretend I can manage. I will go to bed and cry all night and there will be no talking of how lucky I was to have him or how wonderful a life he did have in the 9 years he was here. There will just be a black hole of hurt and pain where nothing makes sense and I will allow the question of why to stand. I will ask it again and again knowing I will never get an answer and certainly knowing that there could be no answer justifying ending my beautiful boys life. Tonight is a dark vicious night. And tomorrow we will get up and take his brothers out and we will be together and try and make it a good day, but we will all know that it won't and can't be. It will be one more day without Oscar that he should have enjoyed, one where he should have been excited about family and a birthday party with his friends and his presents. Oscar's last normal birthday was his 7th - On his 8th he was ill and a few days later we got his diagnosis and on his 9th he was going through treatment and unbeknown to us had potentially already relapsed. I can't remember what we did for his 7th birthday, but I sure hope it was good.


Leavers 2016

Leavers 2016

Guest Blog by Phil Martinez, Trustee of OSCAR's PBTC, friend, teacher and football coach.

“I’ve always got the memories while I’m finding out who I’m gonna be. We might be apart but I hope you always know, you’ll be with me. Wherever I go…” they sang, that fabulous little group of ten-and eleven-year-olds, closing the pages on their time at primary school, a time filled with beautiful and fun memories but also marked with great sadness: the death of their friend, Oscar.

But kids, eh? Kids brush these things off, don’t they? They play and laugh and smile and busy themselves with worrying about whether they will get the next big X-Box game for their birthday, or how many sweets they can eat in one go at Hallowe’en, or if their trainers are as cool as the trainers their friends have.

Not so. Oscar is always with them and they showed this time and time again, particularly as their time at primary school drew to an end.

“We have to include Oscar in the Leaver’s Assembly, Mr.M. He is part of our class,” said one girl to me many months ago. So they shared memories, chatted, wrote stuff down. Those of you who knew Oscar, or who have come to know of him from the words on these pages will find little surprise in what they said, but for me it was the depth of feeling that he brought out in them that touched my heart.

“He would always lift your day,” said one.

“He never doubted himself or anyone else,” said another.

“He could make anyone smile.”

“He was an inspiration to me: a boy I always wanted to be like.”

What a legacy Oscar has left these children. Not the tears and the sadness, although that is certainly there, but the friendship and the happiness of days lived in smiles and with enthusiasm.

There were plenty of fun memories too. The time in the infants when he whispered to some of his mates a rude word (don’t worry, it wasn’t that rude) and then they ran round shouting it loudly to each other at playtime. And the time when their Y2 teacher left the school and they had a small surprise party, that Oscar - unable to find a suitable hiding place quickly enough – stuffed himself in a cupboard but fell out ahead of time as she walked in, adding a wry ‘Surprise!” to his impromptu arrival.

“He’s always with us,” one of the children said at the end of the tribute in Leavers’ Assembly. And he has been. His picture is in their Leavers’ Book and they wrote messages in one that was printed for him; his name appeared on the shirts that they signed for each other; each one of them on their last day at school proudly wore a wristband for the charity that bears his name.

And they talked about him, and thought about him, and shed a tear for him. Most importantly of all they keep his memory alive and hold him in their little hearts.

On the last day of their residential, a double rainbow appeared over their accommodation, a sign that Oscar was there with them. They were elated. They stood proudly in front of it for pictures. Then they went in to their rooms and I could hear their upset. They miss him in so many ways.

“A true friend who will never be forgotten,” reads one comment of many similar ones in Oscar’s Leavers’ Book.

“I miss Oscar every day,” says another, indicative of the sentiments written by so many of them.

“I remember chasing you all the time across the field. I still really miss u.”

“Well, where do I start, I used to always look up to you, and you’re still my best friend.”

 

Still my best friend…

 

 

“I hope you get remembered forever and forever.”

In the hearts and minds of these beautiful children, and of so many of us, we all know he will be.


Oscar leavers book 2016

Now life has killed the dream I dreamed

One of Oscar's friends sang a song at a street party recently and, although I do take some pride and strength in not breaking down just anywhere and everywhere, on this occasion I ended up in proper tears.  This is very unusual for me and was in full public view of way too many people for my liking. The song was I Dreamed A Dream from Les Miserables and admittedly I wasn't the only one touched by the song, especially as she sang it so well, but it really got to me that I couldn't stop my feelings showing. This has happened a lot to me in the last few months and it is not something I enjoy.

 

I don't like not being in control of what I let others in on. It baffles me that more than two years after losing Oscar I am struggling more than I was just after he died.  The pain is still physical - I am not sure how to describe it but it just hits me sometimes; a pressure on my chest, a tightening of my throat, and I breathe deep and try to relax though it; the moment passes and with it the pain, but I am always left in a bit of a shocked state realising that it is so forceful- it is such a cliché really, but no less real. Just lately there have been many of these.

 

There are many things we all push ourselves to do; we push for a normal everyday life, we push for the boys to keep being kind and diligent at school and we push for finding joy in all that we do. But there are limits to how much we need to put ourselves through and we’ve hit one of these limits, as we approached the week that Oscar’s school friends finished at the primary school he loved so much.  There was just no point in adding to our pain by seeing all the lovely happy and smiling faces of all his friends so we went away to Italy to try and escape.  So this past fortnight has been a mixture of joy and profound pain for us all. We have gone away with family for the summer, which always makes me feel better – even before Oscar got ill it was always our escape from everyday life.

 

Of course escaping totally is impossible, but we were at least far enough away that we didn’t inflict any pain into what very rightfully should be a happy and exciting time for his friends and their families. I know for a fact how much he would have enjoyed this day and how much he was looking forward to going to secondary school with his friends.  Even back in Year 4, when we all thought he was going to sail though his illness (although looking back at this there was nothing plain sailing or remotely easy about what we were doing but somehow we managed to convince ourselves that we were rocking it), he told me how he couldn’t wait to walk to school with his friends, he couldn’t wait for the day he was going to take the school bus every day and he couldn’t wait to play for his school football team. Those were the three big things Oscar was looking forward to, as any normal 8 year old would.

 

But he didn’t get to do any of that. And we didn’t get to go to his Leavers’ assembly or see him enjoy his last disco, or pick him up from the Year 6 residential.  And as we have done all of this before with Sebastian, we know exactly what we should be doing, and how we should be feeling and it hurts. It hurts to see his friends do all of this, especially as they are all so lovely to us all - you really wouldn’t believe they are only 11 years old the way they show us they still care and miss Oscar in so many different ways. But no amount of trying to be happy for all of them (which we really are trying and most of the time succeeding in) will ever take away the fact that Oscar was stolen from us, Oscar’s chance to have these simple lovely experiences were stolen from him and we have had a lifetime of great experiences and joy with Oscar stolen from us.

 

Life definitely killed the dream I dreamed and it was such a simple dream; truly all I ever wanted was a happy and healthy family.

 


This month I became someone else

I have never been an over-protective mum. I think having four boys I would absolutely run myself to the ground if I had to protect them from every danger the world around them represents but that being said, since Oscar died it is probably natural for me to be a little more cautious when they are ill.

Logic, in my opinion, should still prevail… but now it doesn’t. Milo was behaving differently last week and I acted like a first time overprotective mum – one of those I used to laugh at even when I was a first time mum. It’s just a virus, right? He is lethargic, has had some cold sweats, a little fever here and there and really just wants to be in my arms or sleeping. Apart from when his dad or his brothers are here, then he perks up, at least for a while, and plays and laughs before getting tired again.

So the question I asked myself over and over again - virus, hot weather, teething or nothing – he is a baby after all.  Or do I go to that dark place and consider a brain tumour? There, I said it. Because that is where my mind went – I looked on the HeadSmart card to check what the symptoms for brain tumours are in babies.  I watched him during his sleep to see if I could magically get a sign from him that his head hurts, I checked his eye co-ordination, tested to see if can he still stand. And yes he can stand perfectly fine now and with all the practice from my little tests, he can even stand on his own for a while (something good is coming out of my overprotectiveness!).

I know he is most likely fine and just doing what babies do, but I have become that mum who frightens herself into thinking the worst.  This is not helped by the fact that Milo can not, of course, tell me why he is a little out of sorts. It is not helped by my current terrible mood and the fact that this month missing Oscar is hitting me at full force at the moment either. I cannot get away from the fact that I once went to the doctors thinking my son was ill, never imagining being sat in a little room at a hospital and told by three doctors that my son had a brain tumour and an ambulance was now waiting to take him to a different hospital and that all of our lives would be forever changed…..forever saddened, forever traumatised, forever knowing life could change in an instant and we would be powerless to do something about it then.

Normality in the form of everyday family life with an ill baby has all of the sudden turned me into a crying wreck. I need to acknowledge it and keep moving. Let’s look at the positives; my eldest turned 13 and we made his weekend a wonderful birthday party with family coming from all over. My other son will turn 7 soon and we will celebrate that in style. We will go on holiday, we will watch Euro 2016 and Wimbledon with our friends and cheer at the TV.

I am hugely excited by having met Sarah Hewson, our new patron for the charity, and she has confirmed she will be at our ball in September. We met for lunch and she is one of these people who I was just instantly attracted to. She is a mother of two and understands the fear I go through. She understands the need for me to be part of changing the future of paediatric brain tumour treatments.

As a mother who now worries just that little bit more than I used to, I push through it by the strength the positives in my life bring me. The charity, other mums and dads, my children and my wonderful husband who secretly worries just as much as me!


oscar hospital

A year of treatment

I remember exactly when Oscar got ill; it was a lovely Sunday in February and he’d played in a football match with the team in the year above him in which he scored three goals.  Nothing unusual in that, but I remember Ian saying he had played really badly but had just kept at it. When he got back Oscar went to sleep and didn’t get up for three hours. He missed his tennis lesson and was furious because I didn’t wake him for it, but I just figured that because he never slept during the day he must have needed it.

The next day I got called into school to pick him up because he just wasn’t himself; he was lethargic and very pale. Over the next two weeks we saw GPs and doctors in hospital on seven different occasions before the doctor in A&E finally agreed with me that something wasn’t right. What started with Oscar feeling tired had, over the course of a few days, turned into him falling over with balance issues, being sick when getting up from a lying down position, and keeping his head in a strange upright position even when sleeping (the tumour stopping the fluid in his brain flowing freely down his spine causing a build-up of pressure in his brain). All of which was being put down to a virus by doctors – they saw a tired young boy with parents who pushed their sporty son too much. This of course couldn’t be further from the truth; Oscar pushed himself so hard and we always fought to keep him back and stop him from overdoing it (but proudly so).

I started this month’s blog with the idea of sharing a little more detail around living with the day-to-day reality of a brain tumour.  But as I got started I wondered if I needed to go into details of Oscar’s treatment, as surely we can all imagine what it is like.  But then I remembered that before Oscar was ill, I would see stories of sick children and think ‘poor child’ - but I would never really understand the full extent of the devastation this disease brings to a child or their family.

You and your entire family end up living from treatment to treatment, blood result to blood result, scan to scan. Siblings have parents who are there but not really there, because any time that’s not spent in hospital is spent cuddling, administering medicines, caring, cleaning them up and sitting in front of a computer researching (just in case there is some miracle treatment out there that’s been missed). Friends are called in to help with basics, and meals happen as and when they can be fitted in. Meal times become focused around what your child can cope with smelling, or what they suddenly feel a need for. Healthy living can easily go out of the window – something we realised after looking at ourselves and the kids and our strange new eating habits months after Oscar died. And it takes a long time to get back into a good routine again!

As I started to recall all the things that Oscar went through in just over a year, I decided that this was something I wanted to write about.  We set this charity up to join the ongoing fight to stop other people going through what Oscar did.

So here goes; a small but significant insight into one hell of a year of our lives.  One which, if only by pure measure of what he had to go through, surely Oscar deserved to have survived.

It was 23rd February 2013 that I sat in an ambulance to Leeds General Infirmary for the first time – with blue lights and loud sirens - after being told Oscar had a tumour. This was also the first time Oscar had blood taken. Over the course of the next year our little boy went through the following:

  • One brain surgery lasting for nine hours – leaving him with an impressive 15 cm scar right down the middle of the back of his head. This was also the first time doctors and nurses had the pleasure of meeting our brave stubborn boy; only two days after that complex brain surgery (which leaves most children with balance issues) he decided to demonstrate to them that he was ok and of course could walk just fine, getting up and walking and then ending his little walk in front of the nurses station with the words “Well, that was certainly a refreshing little walk” – it earned him an early discharge!
  • One gastrostomy tube operation to insert his feeding tube through the abdomen – leaving him with an infection under the skin where the tube went in, causing him to scream in pain (one of the only two times he ever screamed through treatment). This was when the real lion mum came out……..and never retreated again.
  • One operation to put in his central venous catheter and port to allow for frequent venous access for drugs and bloods– about 30 needles went through his skin into the port alone during that year. He took it like a man every time.
  • Three tattoos for radiotherapy precision (though he was asleep so does that count?)
  • Four MRI scans (and two CT scans). Each a horrifying 1.5 hrs spent with loud banging noises around you and locked down so you can’t move your head – Oscar hated these.
  • 30 radiotherapy sessions under general anaesthetic on 29 consecutive days and on one of these days he had two anaesthetics and treatments in one day. The mask that was created to keep him still made him look like something out of a horror film. The nurses made a mistake when they took the soft mold off him so the next time they put it on him, it stopped him from being able to breathe, which lead to panic attacks. So we moved to general anaesthetic from then on.  And yes the room looks like it is taken out of one of those alien laboratory movies. This was when he lost his hair the first time and is also when they burned his ears so badly and kept having to do it. The pain for Oscar was unbearable. It looked like someone had taken a flame torch to his ears – imagine how the insides of his head must have felt and he never complained. Amazing staff, both nurses, doctors and Candlelighters staff at this clinic – to watch children go through that every day and still smile and keep their spirits up must be one of the toughest jobs there is.
  • Nine rounds of vincristine chemo over nine weeks – this is when he started having foot drop and needed splints because the nerves in his feet wouldn’t work to lift his feet up when he walked. I personally threw the splints across the floor at least once a week in anger over the pain he was going through to get them on – he patiently waited for when the time would come when he didn’t need them, and chose football themed ones to wear.
  • Eight weekends of three different chemo drugs over eight months, each one making him sick and tired – this is when he lost his hair the second time and the foot drop got increasingly worse. He would stay in hospital only for the barest minimum time possible, getting ready to leave as soon as they pulled the drips out and took plasters off (this was usually at 2am). The nurses loved his consistent stubbornness and fighting spirit, and who wouldn’t?
  • 177 school days cut short or missed. Obviously not causing physical pain but the mental challenge of not being with his friends and teachers, not being able to play football at school, missing out on everything they were learning about.
  • Plasters - too many and too big to even count over that year but hundreds, maybe thousands.
  • Kidney function tests every month meaning even more needles and they had to stick him both in his port and in his hand.  A small aside - don’t ever use the freeze stuff that’s provided for skin numbing, it hurts more than the needle. I know because Oscar made me try it and I had to sit and pretend it was all fine – it wasn’t!!
  • Using a feeding pump for the best part of four months every night and sometimes during the day.
  • 687 hours of hospital downtime – thank you for Candlelighters who do amazing work at the LGI for cancer patients
  • An immeasurable number of times throwing up
  • Three blue light ambulance trips
  • One episode with stroke like symptoms
  • Five nights of being woken with sharp brain pain
  • One day of weird brain function testing – it wasn’t a stroke but a relapse
  • One birthday party (his 9th) at Lightwater Valley with his friends coming for a sleepover cancelled
  • One very long brain operation to insert an Ommaya reservoir into his brain for intrathecal chemo drugs – they shaved the front of his head after his hair had finally grown back a little, but mostly he was too tired to acknowledge what was happening. Ian and I were in state of shock and functioned by alternating between hope and researching treatments
  • Five days of daily intrathecal chemo injections into his brain – and it didn’t even work
  • One end of chemo party swapped for a funeral – one big family, friends, teachers and colleagues devastated and marked for life.
  • One amazing boy taken from this world by a brain tumour – the reason OSCAR’s PBTC was formed. This must not happen to any more of our children

This month we announced our first big piece of fundraising activity, a charity ball in September.  The board and I discussed if this is the right thing to do for a long time - it’s a big leap for a young charity and it’s an event we have to invest a fair amount of our hard-raised money into.  And an event in which we all have to work incredibly long hours to make happen. I am asking the trustees to work long hours, after their already long working days, and all for free and using their passion for changing the brain tumour medical arena. When we set the charity up we knew that if we wanted to grow and get national awareness we would need to widen our reach out of our immediate network, and this is our first big step towards doing that.

As we begin to approach businesses and people who don’t know us, explain who we are and what we do, it reminds me of why we set the charity up and the importance of continuing to push ourselves and raise as much money as we can to fight this disease.  I’ve seen first hand the devastating effects of brain tumours in children and how hard they have to fight.   It’s our hope that the money we raise can go towards new and pioneering treatments that will change things for children in the future so they won’t have to go through what Oscar did. Let’s not let other families suffer like mine has.


The Major Series North Team

THE MAJOR SERIES NORTH - NO MUD NO GLORY!

Earlier this month we had 125 brave people running 10km through swamps, mud, water, fire and countless other mad obstacles for the charity in the Major Series. Four of our trustees, including Oscar's mum, ran the course and there was a lot of laughing, falling and struggling going on.

We’re very proud that this is our biggest fundraiser yet with an amazing £20k donated by the family, friends and colleagues of our runners. Our group was the biggest ever in the history of the Major Series which was an equally proud moment.

We are extremely grateful to Sewell Group who sponsored this event for us and we all ran proudly in t-shirts showing the Sewells logo and our logos, both of which stood out in great contrast to all the mud!

Sewel Group

Please have a look at some pictures from the day here:

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Running with Oscar

Earlier this month I joined 124 fantastic people to take on the challenge that is The Major Series North. This is a 10km run through thick and deep mud, adding in lots of strange, fun and hard-core obstacles. Training had been a little slow for me – it is not easy training when you have a big family and a 6 month old baby - but I can’t make too many excuses as I am lucky enough to have friends around me who will happily sit with my very smiley son (I secretly think he is the happiest baby ever, which really is strange considering the family he has entered, but perhaps there’s some meaning to be found in that).

I had fully expected to go at a leisurely pace and share some fun ‘falling in mud moments’ with friends but instead I ended up running mostly on my own. You see, there was a warm up at the beginning and the ‘Major’ said a few words about the charity, as we are the biggest team they have ever had participating. Had I just looked straight at him and done the warm up I might have been ok, but as he spoke I turned around to look at the whole group.

Seeing all 125 runners in OSCAR’s t-shirts really got to me.  Many of them were friends, or friends of friends, some were total strangers, and the realisation of what we have been doing for the past two years suddenly hit me.  All these people were there to show that they care – they care about our family, they care about Oscar, they care about all the children now and yet to come with brain tumours, they care about making a difference, and they’ve all trained for months and travelled to be there to support us.

The feeling was overwhelming but inspiring, and of course as ever the double-edged sword of ‘if only’.  If only he was here to watch us, if only he was here to support us, if only he was here to enjoy the run with us – because he would have, he would have run as fast as he could and he would not have stopped until the end.

And as I set off I could feel him running with me, so instead of running with friends I ran alone, just Oscar and I. And I laughed through most of it, a rare two hours for me of pure Oscar indulgence doing what he would have loved - pushing myself, working hard and laughing.

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Oscar Hughes

Oscar's 11th birthday

This month it is two years ago I last celebrated Oscar’s birthday with him and I find myself trying so hard to be normal that I have to remind myself that it is ok to grieve and that it is important that I sit down and think about my boy. Every day is hard but the run up to big family occasions like Oscar’s birthday is even harder. But grieving is not only ok, it is something I need to do - take time every day and dedicate that time to Oscar, mentally going through what has happened, why it has happened, why I can't change it and why I must accept it and how I can keep going. And it is mind blowingly tiresome, both mentally and physically, but there is no way around it. I still cry every day, sometimes a little and sometimes a lot.

This is one of the hardest parts to explain about losing a child - it is not a wish to keep torturing ones self, it is just unavoidable. And it is definitely easier to pretend to friends, family and people around you that you are coping, because not only does it stop the pity looks and comments, it stops the focus on you as the parent who lost a child, the one you have to tread carefully around. And herein lies a big problem - because I am fragile, yet I don't want to be treated as fragile. I am in pain, yet I don't want people acknowledging my pain all the time. I want to pretend all is normal, yet nothing really is. I want to go out and have fun, but when I try an emptiness comes over me and I look at the people I surround myself with, whose whole lives evolves around them having fun and I can't feel the fun - although I think that I hope it rubs off on me. I am there physically but I might as well be sat watching a show; the chat, the laughter - it just doesn't penetrate the world I often retreat to.

I am aware I have to keep trying to find the joy in everyday life. And I do feel happy when the five of us are together - me and Ian and our three boys -but that is too much pressure on them, particularly the boys, if for life they are my sole source of happiness. I cope well in one to one situations as well because I am forced to "be present" and probably one day I will get better at big groups again. Until then those close to me will just have to tell themselves that it is nothing personal when I don't howl with laughter with them. If I am there it is because I choose to be and that is as good as it gets for and from me for a while. There will be no quick fix - grieving parents are far beyond fairy tales.


oscar_one_hand_pushup

A New Year

It is 2016, and I can no longer say “my son died last year” – I didn’t know that something like that would upset me, but it has. He died in May 2014 but I still have his memory so vividly playing in my mind and I am suddenly, with the start of a new year, reminded of how long Oscar has been gone from this earth for. I have no idea how to continue yet another year without him. Will the start of a new year continue to baffle me or will this also become my new normal?

We spent New Year’s Eve with close friends and kids this year after a lovely family time in Denmark at Christmas. Our friends very cleverly and thoughtfully turned the start of New Year’s Eve into a small surprise birthday celebration for me as it was the first time they’d seen me since I turned 40 on Christmas Day. I never cease to be amazed by the people surrounding us. There is no handbook to how you help parents who have lost a child so I am pretty sure they are having to make it all up as they go along.

It was still a tough evening and one during which I would go and spend time with Milo. Sitting in a dark quiet room (music in the distant background) looking at a sleeping baby is bound to get anyone contemplating life and I am no different. I thought of Oscar and all the life he enjoyed and I promised myself and him that I would take him with me everywhere I go. I am not afraid to admit that there are times I give up and let go – just for little moments at a time.

It is in those moments I am thankfully always reminded of Oscar’s strength and character, and if I didn’t have this I’d always be down. He deserves that I keep standing up and fighting. He deserves always, that I and everyone else remember his happiness in life. I will undoubtedly keep the tears flowing for the rest of my life, but Oscar will be defined by happiness, not tears, and by achievements and celebrations, not sadness.

Give it all you’ve got, cause’ you’ve really got a lot, give it heart, give it soul, give it mind – don’t stop. This is what Oscar used to sing and what I will soon be singing as I have decided to challenge myself and make Oscar proud this year through various sporting events for our charity. We haven’t finished yet – we will keep fighting for all the other children out there and for Oscar himself. Oscar’s story does not end…..


oscar_brother

You. My answer will always be you when they ask what I am thinking about.

This will be our second Christmas without Oscar and it is filled with conflicting emotions; it is Milo's first Christmas and my 40th birthday, but it is also the first Christmas where we are no longer numbed by the shock of losing Oscar. You see, what I didn't realise is that the first year is not the hardest - you assume it is because of all these things you have to do as a first without your loved one. But the hardest is now and forever, when you realise you don't just have to go through the "first Christmas without, the first birthday without, the first school run without, the first holiday without" This is our forever without Oscar, every day and every milestone for our family.

Ian and I went Christmas shopping with Milo the other day and I had written a list of the usual suspects that I still needed presents for. What I didn't realise was that Lucas had taken it upon himself to correct my list with his Christmas wishes as he and his brothers were missing off it. So there was Seb getting feefer ponts (FIFA points), Lucas wanting mach artax (Match Attax) and Milo having sox (a pair of socks I guess, not an exciting Christmas for him!) and then there was Oscar on his list, with just 'Oscar back' written after his name.

A few days earlier we had gone to town for a family day out just enjoying the Christmas atmosphere. Later that night Seb asked how we would have done that if Oscar had still been here. I wasn't really sure what he meant, so he explained that with Milo's pram in the back of the car there wouldn't have been room for Oscar so how would we have gone to town as a family?

It is not only Ian and I who have Oscar in our mind with everything that we do, the boys thankfully (but painfully) have, too. It seems a blessed pain we will all have to live with for life.