Monday, March 28, 2011
Leo had the cataract in his right eye removed and replaced with an IOL at the end of February ... so far, so good! His close vision was nil with the right eye alone and at distance was 6/48 which means that just using his right eye, he'd have to be at 6 metres for something I can see with my glasses at 48 metres. So his sight in that eye is 6/15 and with no close vision as the IOL (implanted lens) does not accommodate as 'normal' lens do. He can see distance but not focus. He's therefore currently using his left eye for reading and close work such as writing and once the cataract in his left eye starts affecting him day to day, the doctors will replace that lens with an IOL also. This then means he'll need bifocal glasses.
So all was going well and the bit PJ and I dreaded most after finding out the doctors may not be able to put an IOL in i.e. he'd be blind in his right eye with no lens, was the eye drops post-op. Sounds very silly doesn't it? Leo has had chemo and radiotherapy, blood transfusions and far too many drugs to name here ... and yet, we were worried about the eye drops. Purely because Leo has always hated eye drops. Having his blood taken ... no probs. Eye drops ... forget about it!
But lo and behold, why should we be surprised that Leo steps up and does a grand job with his eye drops and even goes back to school one week early after his op because he's just on awesome form.
BUT then he develops this 'growth' of sorts on his eyeball itself. You couldn't see it to look at his eye. You could only see it if you pulled the eyelid down and he looked up at the ceiling. So it's kind of hidden away and his eye feels hot. Leo described it as having a 'hot force field' around his whole eye. Not good. The long and the short of it all is that after seeing four eye specialists, he has a hole in his eye from an injection given during surgery. The injection was for a steroid which 'may' have been injected at the time of the op. I say 'may' as the steroid and injection are not listed on his surgery notes. I know because not only have I seen them but I asked the surgeon to show me where this injection and prescribed drug he thinks he injected into my son's eye was not listed anywhere. This after the same surgeon had 3 hours earlier said he didn't know what this 'growth' was, had nothing to do with the surgery and that we should start looking at other issues medically such as leukemia or tumours relating to radiotherapy or sarcoidosis???
I am now happy to say that after a week of the hole in Leo's eye getting bigger, it is now staying the same size. So nothing is needed intervention-wise just yet. He is on 3 lots of eye drops - steroids to help it heal, antibiotics to help prevent infection and also a lubricant as he has a very dry eye due to radiotherapy. None of the 4 eye surgeons we've seen including Leo's surgeon have ever seen this type of thing before so we're not sure what the future holds for that right eye. I hope the eye heals on its' own with no surgery as surely if it requires surgery, then that's at further risk of not healing also. The feeling is that because the eye has had massive doses of radiotherapy, the eye is not healing as it should do.
No one tells you when your son has cancer at the age of 3 about the emotional turmoil which continues to ravish their lives. On the one hand, we're soooo very thankful he's alive today as that was a very real danger we had to deal with throughout his treatment. But on the other hand, is it wrong for a mother to just want to never see the inside of another treatment room or to have to hold their son's hand so tightly whilst he undergoes his 62nd general anaesthetic in nearly 3 years? I just kind of want him to be left alone and yet, as soon as I write that, I know that as long as he doesn't relapse or succumb to a secondary cancer or tumour, Leo will always be in the medical system. Whether it's the growth hormone or the thyroid issues, or his kidneys, or his eyes or x or y or z .... but at least we have him here with us and we're able to hug and kiss him as much as we want every day. I know other mums whose children have had to fight the battle with cancer again and who are very unlikely to make it, so I shouldn't complain about yet another hospital visit, I know.
Leo's planned scan for the end of April has been scheduled a little earlier than planned and is this Friday so we'll cross our fingers, toes, legs and anything else we can that the MRI shows an unchanged picture to the lump which has been left behind. His usual chest x-ray which again, should have been at the end of April, is also on Friday so this is the one we kind of get more concerned about. We know if it comes back, it's more likely to be in his lungs which is only detectable by an x-ray and no outwardly obvious symptoms - and also if it starts to grow again in his head, we're likely to see some change in his eye again as we did at diagnosis.
As I write this, Leo is still not right from the iron deficiency anaemia he's had since early January. The fabulous thing about our son is that whilst he's missed every morning of school since mid-January, he's keeping up with his classmates with work. A maths test on Friday saw him score full marks despite not being in school for any of the work! Now that's my boy! His daddy was pleased ... being a maths teacher and all!
He'll have his bloods checked again on Friday and so we'll find out if the iron he has twice daily and having any affect on his iron stores. We've been told it can take a good year to develop good iron stores again and as he's still not quite right in terms of energy and appetite, we don't think his blood work will show anything new!
Right, off to bed. It's a new week and lots going on including a Coffee Morning on Tuesday to raise money for Clic Sargent, the children's cancer charity in the UK who do so very much for children just like Leo.
Tomorrow's a new day ...
Wednesday, December 01, 2010
Leo has also fallen down the stairs at school and hurt his leg, but shook him up quite a bit. So much so, he doesn't want to go downstairs at home without someone there as he says it's too blurry. We're not sure whether he just wasn't concentrating at school or whether his perception of depth is altered due to the cataracts.
It appears our initial fears over the lack of answers provided by the surgeon are unfounded - it led us to believe he wasn't sure what he was doing however, it's much more clear having sought out further info, that the surgeon literally cannot tell us if Leo will ever be allowed to drive and all our other fears because he doesn't know. His primary objective is to prevent Leo going blind. Without these operations, that's the absolute end result. So we've no option but to lead Leo back to the hospital in January for his operation - followed by eye drops every 30 minutes, 24/7 for at least a week post-op and then every hour, 24/7 for another week or more so as to try and prevent infection in the eye, which again leads to loss of sight. It's a strange one as normally when you sign a consent form for surgery or a general anaesthetic, as we've done over 70 times for Leo from May 2008, you usually have a fair idea of the outcome and associated risks. We don't in this case so we'll have to literally wait and see.
I also feel bad that I assumed cataracts ops are the same regardless of whether you're in your 80's or a child, however the more I've learned, the more I realise this was a foolish conclusion to come to. Last week we met another surgeon at the Eye Hospital after Leo's right eye swelled up in a similar way to when he was first diagnosed. Turned out it was eczema inside and on the outside of his upper and lower eyelid - which in itself is not an issue and is no reason to prevent the operation in January going ahead, but can slow the healing process and again increase risk of infection. I digress ... this particular surgeon we met said that he would want Leo's surgeon to do any op on his or any of his family if they needed it, and that he has even operated to remove cataracts on a two week old baby.
It was therefore good to meet this doctor despite the circumstances where PJ and I thought we were very much dealing with a relapse. How on earth do we then tell our son of nearly 6 years of age that he'd need to have the meds which make him sick again? I spent the night before we went to the A&E thinking through how we were going to tell our families and the new friends Leo has made at school - and so when the nurse at the Eye Hospital A&E told us to go get some lunch and come back in an hour, we both felt (but didn't tell each other) that they were rounding up the troops! Anyway, it was eczema not cancer so phew! And it would not have been great timing as my Uncle was taken very sick that same weekend so not sure our family could have coped with any more stress or bad news.
Chest x-ray on Monday, Dec 13th with check-up with his oncologist also, followed by three more visits to hospital (egg challenge, eye hospital checks and psychology / play therapy) before the day of his first operation in early January. Then his op and then another head MRI under a general anaesthetic at some point in January, plus weekly eye checks post-op so plenty going on for our brave boy.
Monday, November 01, 2010
On a sad note and a real wake up call, two children who had treatment at the same time as Leo, have sadly had to start their battle again - Harry who is undergoing further treatment for Ewing's Sarcoma and also Timmy, whose cancer was very similar to Leo's, and he is battling embryonal rhabdomyosarcoma again. Our thoughts are with their families and we hope all goes well for them.
Thanks for all your support and prayers for Leo, and I will update soon - as soon as we know more about his forthcoming op.
Monday, June 21, 2010
Leo's appointment with the neuro-endocrine people has been brought forward to tomorrow so we await their findings from the Insulin Tolerance Test of two weeks ago. He also endured 3 cannulas in his hands in order to enable to oncology day beds staff to administer a kidney function test. A blood result from a month or so ago, I forget now, showed that his kidney function / urea was not right and we already know his kidney function is damaged from the chemo but it's decreased since the last test about a year ago which is the last time his kidney function was tested.
So the neuro-endocrine test was not too pleasant but the nurses and doctor were fantastic, although very serious, given the circumstances. Essentially the docs administer insulin which made Leo very faint and sweaty and reduced his blood sugar to less than 2, which is why he felt unwell. They then gave him some glucose intravenously, waited for a minute or so, checked his blood sugar again, gave him crisps and strong squash but his blood sugar was not responding - and then gave him some more glucose via the IV to bring his blood sugar up again. Then they check his blood sugar every 5 minutes plus take samples at regular intervals - then finally he was allowed some proper food after the final blood sample....
and so tomorrow, we'll find out what's going on for sure and whether a lifetime regime of growth hormone injections are on the cards.
Leo is doing great with his thyroid tablets and I learned that it's not actually his thyroid which is a problem - it's the messenger signals from the pituitary gland in the brain to the thyroid which is working too hard, hence the thyroid tablets. Make sense? No, nor does it to me some days.
PS. Hope you like the Disney pictures above!
Monday, June 07, 2010
So hospital stuff over with....we have returned from what could be called a Dream Holiday - it was all about Leo and what he needed, but was restoring for all three of us. We've returned to the UK with a renewed vigour despite returning to 3 appointments for Leo in the first ten days home.
Pics of the whole Disney part of the trip will be posted as soon as the CD arrives from Disney.
Tuesday, May 04, 2010
And he's doing great. Loving school, loving life and soooo looking forward to his holiday in a few weeks - not that he knows the details....if only he knew about Give Kids the World and all the Disney treats he has in store! He's excited enough about the 9 hour plane ride, nevermind how he'll be when we start telling him all the details!
I watched a truly inspirational programme about Major Phil Packer this evening which has helped me to put our life into perspective and give me a bit of a kick up the behind. I've needed it as the scare we had over Easter, when we thought the cancer had made a return, has really struck me down emotionally..and physically as I've had neuralgia and a dodgy tummy bug for the past two weeks, which seems to happen when there's been major emotional roller coasters to deal with.
Major Phil Packer was significantly injured on duty for the British Army and yet, his strength of mind has seen him walk again when only 2% would do so given his injuries. This is the man who completed the London Marathon in 14 days in 2009 amd this year, he completed it in just 26 hours with each hour relating to fundraising for a specific charity. The Major's 'thing' is to inspire and he's certainly done that and then some. Here's a man who has taken his new path in life and made it work for him.
This is what we must do. Yes, we do live day to day wondering if the cancer will return although the fear is not as crippling as it was one year ago, so that is good for the future. A letter today from the neuroendocrine specialist has said Leo's thyroid is not working hard enough so he'll need a daily tablet and our GP will sort this out for us. This morning this upset me as it's another 'thing' for Leo to deal with. Tonight, I am just thankful that he's still with us, living, laughing and cancer-free.
Tomorrow is a new day and I cannot wait...
Sunday, April 11, 2010
Very weird fortnight and probably the most stressful since the end of Leo's treatment in Dec 2008. His eye started to swell in a similar way to before he was diagnosed with cancer and so his docs decided to do an MRI which isn't really scheduled for another month or so. It really looks like nothing very much if you look at the picture above but given the speed at which the tumour grew last time, it was crucial we made sure nothing untoward was happening behind Leo's eye to make it swell again. Luckily, and thankfully, nothing is growing again and the tumour bit left behind is behaving and not doing anything which is cause for concern. So we're not sure why his eye is doing this but hey, let's see how it goes.
The strange thing was that this family were staying at Clic House where we spent over 3 months at the beginning of this journey - not only that but they were living in room 6 which is the same room we had, so I felt a real affinity with them. It was also the first time we met a family newly-diagnosed since we finished treatment with Leo. All the dread and worry came flooding back and I hope I didn't transfer those emotions to them. We went from thinking the cancer had returned at 12 noon to confirming it hadn't with Leo's oncologist and radiologist at 5pm - phew. But the Felix family were just starting their new life with cancer now a major part of it.
Thursday, March 25, 2010
1. Thyroid seems to be working as his weight has not slowed in terms of growth as much as his height - last time he was on the 9th percentile on the growth chart and now it's not on the chart so under the zero-th percentile, whereas his weight is steady around the 20-25th percentile. Leo had bloods done Tuesday (and was awesome, again watching the needle go into his hand without a squirm or a squeal - very proud).
2. He seems to have developed a pot belly and although we're now buying Leo aged 4 trousers, it's not due to needing the length but needing to have enough room for his tummy!! His specialist says that a pot belly is indicative that his thyroid is fine but his growth hormone is stifled.
3. These two above indicate his thyroid is working (although we'll know for sure once the bloods confirm this) and the two things which could cause you not to grow are thyroid and lack of growth hormone. So if his thyroid is okay, then it's lack of growth hormone and damage to the pituitary gland as a result of the radiotherapy to his brain.
4. Finally, and this bit PJ and I are really confused about, but the wrist x-ray Leo had last June was examined for bone age and his wrist showed that his bones are those of a two year old? Not quite sure how that happens as he was only diagnosed with cancer at aged 3 years, 3 months? So how does one have a bone age of a two year old? Will ask that question next time we see the doc but it was all a bit shocking to hear all these things on Tuesday that you forget to ask the things that you really want answers to because you're busy listening to things you don't want to hear and your brain takes time therefore to process that info.
It's the first appointment in a while that PJ and I feel very tested about because it's all so real now - yes, we should be grateful that Leo does not have cancer any longer and he's not relapsed as yet, but as if having cancer isn't enough, he now has these other issues. Okay, yes, so kids all over have daily injections if they've got diabetes but they're not our children. Leo is our child and it's just heart-breaking that given all he's been through, it doesn't end. And it won't end...
Anyway, Leo is great at having his bloods done and he even reminds us at night for his daily eye cream when at the beginning he hated it...so perhaps after a few weeks of heartache with encouraging Leo that he needs to have this little painful shot, he'll be fine and it'll be the norm!
The next step is a day in the hospital as an in-patient and they'll give him insulin to make him hypo to see what his body does, as this is meant to provoke the body to send out growth hormone - and chemically, if his body doesn't do this, then he'll become poorly, at which point they'll give him glucose to bring him back out of it - and that's the final proof they need that chemically his body does not respond the way it's meant to. After that, we'll start on the road to daily injections of growth hormone.
Eye hospital next week so a good check on his cataract growth so who knows that that'll bring...
Thursday, March 18, 2010
After 4 weeks of no hospital appointments, we're now back in the realms of plenty of hospital appointments and so the latest was on Monday. Thankfully, Leo's latest cancer check-up has been clear - no cancer in his lungs / chest which is the main worry as that's where it's most likely to return. Leo was once again fantastic having his chest x-ray done and really, truly, could probably get his x-ray done every two months on his own! He knows exactly how to get to the hospital, which floor he needs for his chest x-ray, what he has to do once the radiologist calls him in for his x-ray and then where he needs to go to meet with Dr. Steve for his follow up.
Last week, we did have a few moments where Leo had said he didn't want to go to the hospital but we've managed to allay those fears for now and he behaved very well on Monday.
One aspect did break my heart as the doctor says it's extremely likely Leo will need to start growth hormone treatment very shortly and after a few more tests to confirm this. Basically his feet have not grown since May 2008 when he was diagnosed and his height is going downhill fast on the growth charts doctors are so fond of. He's now 101.7cm and I think he was 98 cm in May 2008 which means very little growth in nearly two years.
The other scary thing therefore is if his pituitary gland has been damaged which means he's not growing properly, it's therefore much more likely that Leo will develop learning disabilities which affect his memory. We have though decided to not go down the route of neurologists just yet as they cannot give us an accurate basis of what Leo's needs will be for a couple more years.
We are however very worried about Leo's nightmares which he has regularly, pretty much every week. I've managed to eventually get to the bottom of what his nightmares are about and one example from last night is that there are 'people trying to kill me' - again, you can imagine PJ and I being rather concerned about what's going on that he consistently is having nightmares about death ... and not just anyone's death but his own. We've never, ever, ever spoken to him about dying - certainly never approached anything about him dying - he was too young to ask if he was going to die when he was on active treatment, but perhaps he's realising how serious things are despite the cancer not returning as yet? He's most certainly very aware that none of the other 23 children in his class miss so much school due to so many hospital appointments.
PJ and I have therefore decided to ask his oncologist to refer him for some help with his thoughts and fears about who he is and what's happened to him so far.
Another example of where Leo's head is right now is something which happened after the hospital on Monday - when we go to the hospital, we usually have to go to the Oncology Day Beds Unit where it's shoved in our faces about how serious things have been, still are and could be more so in the future - children with no hair and that sick cancer stare are pretty much everywhere (or so it feels) when we return to the hospital. I hate going there but would never let Leo know or feel this from me. But on Monday, he said to me he wished Morgan was in his class and when I asked why, he told me it was because Leo was like Morgan (and this wasn't Morgan, the lovely girl in his class ... this was Morgan, with whom he'd played for about 10 minutes whilst I discussed cataracts and growth hormones with his doctor).
So after just 10 minutes of playing with another child who was bald through chemo, Leo felt so comfortable with him, he wished they were in school together! I think it also shows that Leo somehow does not feel connected with most of the children in his class. To look at Leo, you'd never know his history unless you knew why he wears his sunglasses so much (to protect his eyes and also due to the cataract in his right eye causing so much discomfort in daylight).
Despite trying to keep away from any families we met throughout our journey during treatment, purely to protect ourselves from the reminder of what Leo has been through, we know feel that perhaps as Leo grows up, he may need a circle of people and friends around him who really do know exactly, 110% how he feels at any given time ...and we've now realised from his comment on Monday, that he needs to have those friends and associates now.
So we've got in touch with one other family whose son had the same type of cancer at the same time as Leo, but a year older. We'll go meet them on Sunday and God willing, once those boys are 15 years of age, or 25 years old or older (please God...), if they come across things such as job problems, or cataracts problems or not being able to have children - all due to their cancer treatment - they'll be able to talk through their fears and thoughts together, as they'll most likely know more about how the other one feels than we will!!
Tomorrow's a new day and please let Leo have a few nightmare-free nights...please...
Monday, February 22, 2010
Just back from a lovely family break in Cornwall - Leo loved it with all the swimming and playing on the beach at Watergate Bay. He struggled with the sun a lot despite it still being February, but his sunglasses were a constant so no complaining there!
Leo's back to school on Tuesday and looking forward to it, for sure. No appointments coming up although waiting on his hearing test which should be soon (to check it's not been damaged by the chemo although I think Leo is a typical male - listens when he needs to) and I think the kidney test that his oncologist had planned will be done when we see the neuro-endocrine consultant again in March.