It Never Ends

It's taken a few days for me to update on Leo's latest trip to hospital and once you read this post, you will realise why. We've had to take on board lots of info about Leo's future yet again and so we've has to take it on board properly before committing it to paper!

I guess we always knew and were made well aware that there'd be further treatment needed, as a direct result of the chemo and radiotherapy but, I think once the neuroendocrine doctor explained it all to us face-to-face on Tuesday morning, it really hit us that Leo will never be out of the medical system.

Even if our dreams come true and the cancer does not recur ever, Leo will always be seeing one doctor or another for something relating back to the cancer and its treatment. Tuesday's appointment to see the neuroendocrine doctor was all about the effects of radiotherapy to Leo's growth, early or late onset of puberty and his thyroid function.

To quote the doctor, it's 'highly likely' he will need the expensive growth hormone treatment starting in about 1 to 2 years time which consists of daily injections of growth hormone into his stomach until such a time as the doctors are happy with his height. This is expensive but vital treatment as the function of his pituitary gland will almost certainly have been affected due to both the high doses of radiotherapy as well as the region of his brain which controls growth which was irradiated. It's not just about height either but about his bones and organs growing properly and healthily also.

The second aspect is about puberty which will also be very likely to be affected by the radiotherapy. Early onset could mean it could start in the next couple of years and late onset would be just as detrimental, so this will be monitored and again, once there's a concern, another course of treatment will be started.

Finally, Leo's thyroid may not be functioning properly as a direct result of radiotherapy. Not as likely to happen but is still a huge possibility so next time he has an MRI scan, the doctors will do a blood test to check the thyroid function. Any problems on this front can be 'easily' rectified by one tablet a day for life - I say 'easily' because the thought of trying to get Leo to take a tablet every day is not something I'd like to think about, but then it's easier than the growth hormone treatment which is more likely! But then I guess children with diabetes type 1 take daily insulin injections into their tummies so no doubt with some help and training, we'll have this off pat too.

Apart from all this, Leo's been in summer school all week and spent the mornings up at Clifton College doing lots of jumping in puddles, painting and playing. His eating regime is improving slowly but surely so that's quite pleasing and he is still very tired, but getting stronger day by day. By the time he starts 'big' school in the middle of September, he should be just right!

Still Clear

Another chest x-ray clear so another booked for 2 months' time. Dr. Steve was pleased with Leo this morning, who once again was quite hyper, as he always is when he sees his oncologist. He giggles when the doc tries to examine his tummy and glands, and then proceeds to try to look at his chest x-ray and play with the doctor's stethoscope! At least he's comfortable in the hospital, I guess!! Leo was so god having his x-ray too - so much so that we when we came out of the x-ray room, PJ thought something was wrong because we'd been so quick.

We've decided to start the MRI scans on his head again as the doc asked us what we thought - confused? Me? Yes - because we had decided against having them last time around as there was no clinical worth as such because the cancer he had was so rapidly growing that it would not wait for a scan to show itself again. Having said that, and having had a lengthier discussion with Leo's doc, it appears that if it recurs in his head again, then it may not necessarily grow in the same place or in the same direction and make his eye do what it did. This means it could grow backwards into the brain or elsewhere and so asymptomatic for a while. Albeit if it recurs, there will be little chance of a cure but if they do catch it earlier than later, then maybe more can be done or the teatment could be more bearable.

All this being said, we've had a few weeks of nice family time and relaxation and almost a 'normal' life as it could be called. And then it's back down to earth with a bump with chest x-rays and seeing all the other children and adults on the oncology day beds ward at the hospital.

It feels like yesterday we were there practically on a weekly basis and actually it was a year ago we were preparing to head to the Royal Marsden for six weeks of radiotherapy under a general anaesthetic each day. Seems so long ago but actually, he's not yet a year out of treatment and so we are still so grateful for every day as there were times when we secretly, individually and privately wondered if we'd still have Leo with us.

On a more positive note, Leo is thriving in pre-school although only going once or twice a week and he did us proud when he played Bugsy Malone at his Stagecoach end of term presentation. He had the most lines and is the youngest in his class!

We also saw lots of out family recently as Uncle Andrew was home from Dubai so we were lucky to spend time with Sophie, and Leo just adores his cousin. He wanted me to take lots of pictures of them together and not being shy around the camera, the two of them duly complied with some lovely shots.

We also spent a fabulous day with my cousin's children who Leo also loves seeing. We're lucky to have fabulous families on both sides and I do think one of the great things to come out of Leo having cancer is appreciating family much more plus we're living in the UK so able to see them more than we would do pre-cancer.

Life works in mysterious ways but maybe this is the plan for us...

Doing Just Great ... again

Leo, showing his energy plus his affinity to the Lions rugby team in his new kit, and giving us some tunes!

Okay so Leo is tired and sleeping lots, has a cough, not eating all that great BUT... these can all be explained by other things such as the heat or normal childhood things. Still means the docs will check his thyroid function next time we go to the hospital as the chemo may have suppressed his thyroid function.

He is doing a bit of pre-school here and there and also has been up to 'big' school a couple of times now, and he is so very ready for school. And also looking forward to it, which is fantastic and a real relief. Each week PJ and I see him becoming more and more of a normal child which is heartwarming.

Doing Just Great and an Inquiring Mind

Leo is doing great right now. Oodles of energy and really growing up fast. Not having any other children, PJ and I can only stand and watch as Leo amazes us with his wit, energy, love and artistic expertise, and we wonder whether other kids are the same. I am sure all parents are the same!!

We also wonder what he'd be like without all the stuff which has happened to him. We think he's very grown up as he spends a lot of time around adults, and even more so because of his fight with cancer (which he is winning right now). But we can't help stepping back sometimes and wondering why this happened to him, how has he managed to do so well and what now?

Unfortunately, and I've tried to explain this to a few people recently, we're at a tipping point in our lives, where we're trying to plan a future and permit ourselves to even think about a future - when I say future, I mean, can we imagine Leo as a ten year old? Why do our hearts still sink when we hear people talking about or ask what he'd like to be when Leo grows up?

It's almost as though we're just getting our heads around him starting school properly in September, and that's only a few months away. Believe me when I say that only a month or two ago, I could not have said I was excited about Leo starting school because I could not get my head around him making it that far. And that's about as far ahead as we can imagine at the moment. That's not to say that as time goes by we won't allow our thought process to imagine the next year ahead of us, instead of just the next few months.

Seriously, Leo is doing just great. The most recent check-ups were clear so Leo is winning the fight, but as I write that, my heart skips a beat that he should even be in this position. A child's life should be carefree. And life should be all about what we dream for our children, not what we fear. But that balance will switch - the fear will lessen and the dreams, very different dreams, will show themselves much more. We hope...I guess without hope, we have no life.

A few weeks ago we were all in the car to a charity golf day captained by one of our friend's fathers, and they were raising much needed funds for Clic Sargent. I say this because it was on this particular car journey that Leo asked a rather huge question...it was a rather poignant moment when Leo asked PJ and I why we came back from Spain...

Amongst both our hearts stopping in thinking how do we answer that, I stupidly said it's because I had to have an operation on my tummy, knowing halfway through this answer that it was rubbish and that Leo deserved to know the truth without him thinking it was his fault.

And so through tears, I explained we came home because we needed to make the 'baddy in his head' go away with 'the medicines and wobbly juice'....and then there was a pause....and Leo's voice, sad as we've ever heard, replied, 'I wish I didn't have to go through that'.

Boy, did that make PJ and I sob our hearts out for him as hearing your 4 year old say he wished he didn't have to have all those meds etc and return from Spain where we were really settled and happy, is very sad - and in 'normal' life, children his age should never feel those emotions. I guess this is all part of the healing process and will eventually help us all cope with life a little easier...

Tomorrow's a new day...

And Breathe...

A collective sigh of relief as Leo's MRI scan is unchanged and chest x-ray is clear.

The only things we need to follow now for the next two months until his next chest x-ray is to check whether he's developing cataracts, and also get some decent sunglasses to protect his eyes in this sweltering summer we're due!

Plus we're going to have his height and weight followed up at an oncology-endocrine clinic to ensure he is growing as he should. I did joke that height is not exactly part of Leo's genetic make-up but in all seriousness, this could prove even more problematic.

The damage done by the radiotherapy, plus the 7 months of chemotherapy which arrested his development altogether, combine to slow and even stop his growth over the next year or so. He's grown about 2 cms in one year and whilst he lost lots of weight during treatment, he's only now back where he was when diagnosed. So a close eye is needed to see when they decide the time is right for the growth hormone process to start.

The lump we found on Leo's right arm is not too much of a concern as it's not discernably bigger in the past week. This is good news as rhabdomyosarcomas grow very aggressively and very quickly. It has not grown or if it has, it's growing very slowly so just keeping an eye on things for now.

So life continues for the next few weeks and the process of increased anxiety starts all over again until his next chest x-ray in two months time. This is a completely irrational emotional reaction as cancer does not wait for x-rays and scans. If it decides to grow, it will do so and the rational thought process is that the cancer could now be growing and we won't know about it for 2 months! That might be a good thing to not know about it though as at least we can try to continue as though it's not here? Does that make sense?

If you don't know you have cancer, your quality of life is surely better because as soon as that death sentence is cast, and that's what it would be if it comes back, life then changes in ways I will not allow myself to even think about ...

Tomorrow's another day ... and I will embrace it as though it's our last ... yet again and s I do every day.

I am so grateful to be able to spend my days with Leo. He's a joy and a treat to be with - I may even share with you some of his most recent artwork which is outstanding, but then I would say that as the most proud mum in the world, ever!

Updates

X-ray on Monday afternoon to check Leo's chest - just your routine, bi-monthly pictures to make sure no cancer has developed there.

MRI under yet another general anaesthetic is on May 18th to check the left-over chunk of (assumed dead) tumour.

We've definitely noticed Leo squinting more now the sun is out a little more here in the UK. So obviously, we wonder whether it is actually due to the weather or if he's having a few more problems due to the radiotherapy or initial tumour. I guess we'll find out when we follow up with Leo's oncologist post-MRI scan and in his next eye appointment. Unfortunately without putting any suggestion into a question, it's quite difficult to get a 4 year old to really tell you what the problem is with an eye which he knows has caused problems this past year.

We're also well on the way towards improving Leo's diet and the amount he is eating each day. Until Monday, which was exactly a year since diagnosis, Leo had not put on any weight in a year - well he had lost loads and then steadily got back to the same weight. He weighed 16.5 kg on Monday, May 4th, 2009 which is exactly what he weighed the day we went to the Children's Hospital for the initial MRI which would change our world forever on My 4th, 2008.

However, we introduced a rather quirky bedtime routine last Monday which includes an MP3 track of soothing words about eating well means lots of energy and playing outside, and doing lots of fun things...and since then he's not only put on nearly 1 pound in weight (in 5 days), he has also tended to eat a much wider variety of food without the stress and arguments each time we tried to encourage (and make) him to have food.

We have a treat for Leo lined up tomorrow. All 3 of us are off to ride on the real Thomas the Tank Engine and he doesn't know! Cannot wait to see the surprised look on his face at 11am tomorrow!

Thanks to you all for sending the cards and emails of support at this rather weird time - one year on since diagnosis and I think it's safe to say, we're so very grateful for all your support over the course of the past year. Will report on the x-ray and scan as soon as we know something and hopefully, fingers and just about everything else crossed, that we'll say no change. Nerves will be shredding between now and that follow-up with Leo's doc..yet again!!!!! Am sure it will get better.

Thanks again.
H, PJ and Leo xxx

365 Days

A year ago tomorrow our lives changed so significantly that sometimes it's hard for us to really remember life before the big C! However, despite many negatives which are well documented both here and in the minds of all those who know Leo, there've been many positives too.

I'll say that again because it can sound a bit weird...despite Leo having cancer, we've actually found things to be positive about. And yes, most days are really hard. Hard just to get our heads around life as it is now and any future that's mapped out for us all, but generally, on the good days we appreciate life so much more. After all, we do know families whose children are not going to make it and whilst that's still out there for our family, we're currently not there and so we need to be thankful for another non-treatment / non-cancer day, and every day until / or if our worst nightmares do come true.

And this is why the past few weeks with Leo have been simply amazing. He's not been at nursery as his energy levels are still so low, and therefore Leo and I have been doing things each day which make me so happy and proud to be his mum. Despite wondering whether the chicken pox are not out of his system yet (more spots this week - bizarre or what???), not eating and still tired, him not being at nursery school has meant we have spent some serious one-to-one quality time together. His behaviour has been impeccable which is a significant improvement and those anxiety concerns we had before he had chicken pox have dissipated - so perhaps all he needed was to not feel like we were dumping him at school and more time one-to-one with his parents.

Another scan in a few weeks plus yet another chest x-ray, although if Leo does what he did on Friday again, then we may be back at the hospital before these scheduled visits. He took himself upstairs to bed citing a sore tummy and that his legs hurt? Strange but then I guess there must come a point where if you're not eating properly and constantly tired that you're bound to feel like heading to bed and an adult would have done so before now!

So much has happened in the last 365 days and whilst, yes, of course, we wish life was different and cancer had not made us appreciate things we previously took for granted, it has and for that we're grateful.

Slow Progress

Leo is doing well but getting better slowly - having said that, the doctor did say that if either PJ or I had chicken pox with the immune system Leo has at present, we'd be off work for a further 3 to 4 weeks! So we cannot expect too much of him. I've decided to therefore cut work right back and be a full-time mum, and only working once Leo is in bed. As a direct result, he's been really happy with very few of the temper tantrums and anxiety concerns he was showing before. Big lesson to have to learn and own up to the fact that I am not a good part-time Mum / part-time career woman. I've paid the price and more importantly, Leo has paid the price for having a Mum trying to be all things to all people; he has clearly suffered but at least we're on the right track now.

Despite Leo wanting to go to the hospital a few times this week (which also happened when he's been in hospital a while back in February after his birthday), he's had fun at the park, Avon Valley Country Park and with some new friends too. We've also made the most of the lovely weather and played football and golf out in the garden this week too, with PJ having to forget how tired he is when he finally is home from work, as Leo soon perks up despite being super-tired - Leo does a very good job in the puppy-dog eyes and before you can blink, Leo and PJ head off to play football for 30 minutes or so.

Back to the hospital again over the next month or so with another chest x-ray (how many can children have in a lifetime?), and his third post-treatment MRI in mid-May. May be interesting to have his eye checked too as a few times, PJ and I have noticed his eye-lid sagging a little more, but we're putting this down to his sheer tiredness.

Hard to believe that it was exactly a year ago I returned to the UK for my surgery and on the spur of the moment, booked flights for PJ and Leo. Thank goodness I did otherwise they'd have been in Spain when this all happened and I would have been stuck here recovering from a major and life-changing operation. Funny how things happen...

What could possibly happen in the next year? Actually, as soon as I thought and wrote that down...I wished I hadn't...your brain goes a-wondering where you'd rather it didn't when you think about the future...

About the most we can look to is tomorrow and the next month or so...and tomorrow's a new day!

Home Tomorrow

So the pops are going and Leo should be home tomorrow - yippee! He's practically turned his room into an art gallery so tomorrow we need to make sure we pack up properly and not leave any art behind! He'd know, for sure as he remembers everything. I've added some pictures which show what Leo's been up to with some rather more interesting things to do with a hospital bowl...

Once home, he'll have another 10 days of oral anti-viral meds to take which is in addition to the last 7 days of IV anti-virals. We're also likely to keep him relaxed and not doing too much so as he can get better without any hiccups. Not sure if he'll be back at school Monday but we'll wait and see. As and when he does go back, he's been off for nearly three weeks so we'll need to be careful to phase him in properly otherwise we may end up in the same place as before, where he wasn't eating and having anxiety problems.

Another Few Days

Leo's doing a bit better - well enough to do lots of artwork and sticking and learning, in between sleeping! His temperature is more regulated now and only spikes back up to the 39s once a day so that's better for him, and makes him more comfortable.

He still has new pox coming out each day so the virus is active. Today's new pox were on the soles of his feet and in between his fingers, plus one of the earliest pox has become infected so we just need to keep an eye on it.

Fingers crossed he'll be home Wednesday evening sometime..we hope..as long as the pox stop cropping!