Today was the day of Toms annual cardiac check up. Little Man, due to his Noonan Syndrome, has a congenital heart defect. Had a congenital heart defect. It’s a funny world, this world of modern medicine. At birth, his heart sounded quite the way it should. A few weeks later, this was no longer the case… lots of unpleasant sounds were coming through the doctors’ stethoscopes, resulting in quite disturbing faces on said doctors.
In 2004, the doctors confidently went in through his arteries (starting in his groin), fairly sure that they could open up that pesky pulmonary valve using a clever little balloon. They had not counted on the stubborn plasticity of this valve, which stretched for about an hour, then returned to its former, more comfortable squashed self. All of which would have been fine if only it was letting the blood through!! It was not a wasted endeavour, however, because it allowed the surgeons an opportunity to “see” the heart of the problem (see what I did there, with the punning?!). Not only was Little Man’s pulmonary valve far too narrow (stenosed), but the whole area around the valve was much too small.
Two years later, in 2006, everyone was ready to go in and fix this pesky valve. Open heart surgery is a scary thing. We were incredibly lucky to go through it with a two year old. I know that Tom will have to endure this again in the future sometime, and I am not looking forward to helping him handle the anxiety of what is quite major surgery. A two year old simply takes things as they come. Signing consent is something that is worthy of a post in and of itself (note to self… write about consent).
As it was, Little Man made open heart surgery look simple. We were out of hospital 3 days after booking in. Minus a pulmonary valve, and with a widened tract thanks to a bovine annular patch!
Since then, we see the cardiologist yearly. I’m pleased to say that a thorough echocardiogram today showed almost no change since last year. A very boring result, which is marvellous! Tom was wonderful, lying very patiently while Senetta poked him in the chest, sometimes quite hard to get a good picture. I had my first good appointment with a registrar, and have nothing but praise for Dr Henning Clausen… thank you good doctor for listening.
Next appointment is next year… Hopefully by then we will have a happier overall picture, but it is rather lovely to know that “my heart is really good”, to quote Little Man as he gave the news to his Daddy on the way home.
Today was a day of hearts differently too. The thing is, that Great Ormond Street Hospital is familiar to us because Little Man sees so many specialists there. But unlike for other families, it is not a place we live. Yes, we have had a few inpatient stays there, but never for more than a few days at a time. Some families spend weeks and months there. I’m not sure how the mums and dads manage, other than to know that when there is no choice, we rise to the occasion.
I know the exhaustion of spending hours and days sat in a chair by the bedside of a child who is ill. I know the brain numbing experience of hours and hours of the Disney Channel. I know the desperation of never feeling really clean. Quick showers with a limited change of clothes is no substitute for home washing! I know the sag of shoulders that accompanies that mediocre cup of tea made in stolen minutes in the parent kitchen. I know the endless waiting for nurses, doctors, medication, decisions. I do not know the impact of this life over more than a few days, but I do know that as much as the children struggle and suffer, the parents do so in equal measure. Not to mention that horrific adult component that adds knowledge of the big picture, and parental instinct that makes you ache each time your little one winces.
So… at the end of last week I put out a little post on my Facebook page: “All GOSH peeps, I’m coming up! Who needs a hug? A coffee? Anything else? Care packages can come your way!”.
I was so pleased that two mums were able to respond, and Little Man and I duly made our way first to the bone marrow transplant ward to visit Eric’s mum. Her little boy is battling the same leukaemia that hit our Little Man, Juvenile Myelomonocytic Leukaemia. A real nasty. And Eric is just about to undergo his second bone marrow transplant in a bid to cure him. His beautiful Mama has another little boy, only five years old so she is juggling an impossible situation. What can I offer? Very, very little. A hug, an easy “hello, I know you, but how good it is to feel you, to see you, to hear you”, a coffee brought from the local starbucks, and a mini care package. I had found some sweet packs including a shower gel, body lotion and lip gloss, all shimmering! A body scrub to top it off and some dry shampoo for an emergency pick me up… And unfortunately, the coffee is transient, so I added a mug and some sachets of that substitute of Starbucks, Via! I have it on good authority of another bone marrow transplant Momma that it’s not bad at all!!
We only had a few minutes together, but I hope that she got just a little boost today… just enough to get her through the next few minutes of an endless day!
My other wonderful friend was simply too exhausted to meet me. I am so so pleased that she texted me to let me know she couldn’t! She’d had a day of team meetings with doctors, nurses etc etc, in the unbelievably complicated care of her little girl. I didn’t need to see her, I just wanted to offer my heart, a break if that’s what she needed. And actually, it wasn’t what she needed. She needed to spend time with her girl! So Little Man and I popped to the door of the ward long enough to catch a nurse and hand over our care package.
Sometimes, I hope what’s needed is for a friend to offer a visit, but be equally happy to bow away if the time is not right. So that is what my heart gave to Mama S.
All you Mamas in hospital, I send my love to you, courage in droves, hugs and the encouragement to allow you to say: Today, THIS is what I need.
Today, it’s all about the heart.
I’m laughing as I write the title to this post… because it’s such a mad little life I lead sometimes. Today was truly rather an average day in the life of me… but as I was thinking about it nearly all of it seemed rather off set from most people’s realities.
The morning started well. Sweet Girl woke up to the cat knocking at her window and demanding a cuddle (good cat!), and noticed a frost, which made her day start with a thrill and a smile. A rare start indeed, and she had a wonderful morning. She was able to get into school without a panic attack for the first time since September.
By this time, Little Man had been awake and playing for some time – his conversations are one of the highlights of my morning as I listen to the different voices and characters he invents for his games. Breakfast, feed, packed lunches all followed suit in the one part of my day that was not at all average in my world, but far more Normal. I treasure these mornings because they are so rare.
Off we went to school in the van due to my timetable that morning: social services meeting at school at 9.30, followed by a paediatrician appointment for Little Man at 11. Therapy for me was due to follow at 2, then school pick up and an optician appointment for Sweet Girl. Really a very ordinary day.
Unsurprisingly, the social worker of a few months ago had not actually confirmed the appointment with anyone other than me… So we were left the two of us, me joined by our new social worker (well, family support worker… we have been downgraded due to our “stability”. After three months on this new status, social workers are once more involved and I suspect we’re about to be upgraded again. You just have to laugh!). Since we had spoken at length only last week, it was decided that we should reschedule the appointment so as to involve the other people who help Darling Man and I look after our Offspring. All good, but a colossal waste of time.
Twenty minutes later, I headed off to pick Little Man up from school and to the hospital. He’s not well. He experiences daily headaches, he is losing weight and is extremely lethargic. Recent blood tests came back normal, so we have a little quandary. Into the mix comes a large dose of maternal instinct (which unfortunately has rarely failed to be accurate in the last 9 years or so) telling me that something is really quite wrong. The bit I’m hating is that the “feel” of Tom, his touch, how his hand feels, the way his skin feels is like only one thing I’ve ever felt before – him at 9 weeks. One week prior to his diagnosis of leukaemia. Major PTSD episode. I hold his hand and I’m transported to almost exactly 9 years ago.
So… doctor’s appointment. She knows me well, and knows Tom well. She suspects that the weight loss and “loose skin” are probably due to his growth hormone treatment… so she will talk to the professor and we will decide shortly whether or not we should continue with that. In the meantime, don’t mess!! He has some strange bony lumps on his elbows, most obviously the right one. I’ve only noticed this in the last few months, and frankly, a new lump doesn’t inspire confidence. Although the paediatrician doesn’t think it harbours anything bad (she’s an experienced oncologist and endocrinologist as well as general paediatrician… I trust her), we do an xray to have a look at the bone.
Little Man Tom has very limited rotation in his arms. When accepting something that is handed to him, he contorts his entire body in order to be able to offer his palm. While the radiologist was positioning his arm, he was in a good bit of pain and quietly asked me,
“Mummy, can we ask the doctors to fix my arms so they can turn properly? Or will they always be like this?”
Xray done. I await the results.
Next step is to do a CT scan of his head. We are looking to rule out the possibility of “something” that might be taking up space in there. Deep breath. And MRI would be better in terms of radiation exposure, but would necessitate an anaesthetic as he could never stay still enough without one. And we don’t do general anaesthetics on Tom without really good cause (not least because it means going up to Great Ormond Street Hospital and time and fuss… oh and generally he’s a bit risky). So the consensus is let’s do a CT with sedation to get an idea of what’s going on. If need be, we can then do a targeted MRI which will be much quicker and should be doable without a general. While he’s sedated, we’ll take some more bloods to compare with the more recent ones, and make sure we ask for a blood film so the consultants look at it in more detail.
Phew… job done. Until we have further information we’ll settle for a follow up appointment in three months, though the doctor and I will stay in touch by phone or email.
While waiting for the generator test at the hospital to be over so we could get the elbow xray done, we went to the hospital pharmacy where I hoped I would be able to pick up Sweet Girl’s medication. As important as I know it is, I dropped the ball and forgot to order it in time. Last Friday saw me make a desperate phone call to the paediatrician’s office, and luckily she was as good as her word and the meds were waiting for us.
In a little aside, I’d like to point out that in the UK, it is very rare for a child to see a paediatrician. Babies and children see general practitioners (GPs) for all their standard medical care. This is not the case in France, where GPs almost never see children. Here, a paediatrician is a specialist consultant that sees children who have significant medical problems… they also tend to be specialised – in enuresis, oncology, endocrine issues, epilepsy, neurodevelopmental issues etc etc… So all this talk of paediatricians gives a clue as to the oddness of my life!
Meds were picked up, xray was done and it was back in the car and off to school. With just enough time to spare to get myself to the petrol station to pick up petrol, food and some money for therapy. I was hoping to check in on Sweet Girl who was aiming for her second consecutive full day at school, but had to be content with the receptionist being unaware of any issues. Not what I was hoping for, to be honest. I am convinced that I am NOT an overprotective mother despite what some may think. So when I need to know that my kid is ok, there is usually a good reason.
My last two therapy appointments had been unaccountably thwarted by children and traffic, and my burden of weird dreams and stress had reached bubbling point, so off I went!
Good talk, thank you!!!!
Miraculously I was back just in time for school pick up, to find two children happy to see me and very tired, but on the whole in surprisingly good shape. Tom had not had the correct feeds (something else to chase up again – could we not have a different battle please?), but I was happy to see them come out today.
Back into the car and off to town for an optician appointment for Sweet Girl.
Back in August she had an eye test that showed a very mild short sightedness in her right eye. After a remarkable meltdown as she felt she had in some way “failed”, or was at risk of death if not something worse, she settled down to her slightly blurry eye. But she is hyper sensitive in general, so I wasn’t surprised when she started to speak more and more frequently about her blurry vision. That said, I am very short sighted, as is all of my family. We’d reached the point where a further test was warranted.
My girl is really lovely… just take it from me, she simply is!
A tired Mummy decided that McDonalds was absolutely the right choice for dinner.
Home, bath, pudding, bed!
PS… Upon arriving home, my phone was blinking rabidly… I must take time tomorrow to phone the company that supplies me with Little Man’s growth hormone, call his nurse back to let her know what happened today, and call Eldest’s key worker about … something!!
And there we have it. A fairly average day. What does yours look like?
I’ve been pondering how to approach this week’s post. I’m quite determined to approach this blog with some sense of regularity, which means that indpiration is not always at my beck and call.
I also swing from the practical nature of a blog which keeps loved ones up to date with the roller coasters of my life, and the more philosophical nature of a blog as a journal. I love both. As difficult as my little tangles can be sometimes, I’m well aware that it is much harder for others to hear of them. Mothers never lose that instinct to protect and shield their children from pain, and the inability to do or change what their children live is surely one of the hardest tasks. Add in a daughter who is fiercely independent, and you have a recipe for heartbreak!! The intermediary of the written word allows me to be utterly honest about the facts, but more importantly the emotions of life, without needing to concern myself with the immediacy of loving concern. That same written word allows the loving ones to think, process and then (hopefully) realise that there really is very little tragedy. Life is drama of a sort, to all those of us who live it. What form that drama takes depends on so many things: from circumstances outside our control, to our reactions both physical and emotional. Admittedly, some dramas are more unusual than others, and if your drama contains some trigger words (cancer, autism, but also divorce, death and again tsunami, fire), then ears prick up a little more.
My drama has a good few trigger words, but how I live it is what really matters. In all of the tangles, there is a great deal of simplicity. There’s a great deal of “normal” when the children fight like cat and dog. A great deal of “normal” also when we get on our bikes (and power chair) to cycle into town and enjoy coffee and baby chinos.
Tonight was maybe not so “normal”, but was just wonderful!
My very dear friend, Beauty (do go and visit her blog, Adventures with Breast Cancer) is a laughter leader. Isn’t that amazing, and wonderful and just smile-inducing? If I’m not mistaken (and I do hope she corrects me if I’m wrong), she graduated as a laughter leader only weeks before being diagnosed with bilateral breast cancer. Sometimes life plays cruel tricks. Beauty is a lady I admire with all of my heart. She, like me has three children, all of whom grapple with disability of one kind or another. She, unlike me, was left alone a while ago and luckily has since found a Wonderful Man. She is an inspiration, and sometimes needs to be reminded of that – especially when chemotherapy is doing its ugly thing.
So… Beauty held a laughter workshop at her house this afternoon. She wanted the practice to help with the possibility of attending a television show dedicated to happiness. If I am a little cryptic it is only from lack of knowledge, and her concern that she may not make that event due to ugly knight Chemo. I chose to come with my two home kids. Sweet Girl and Little Man loved the laughter exercises we did this summer, and I was thrilled to introduce them both to Beauty, and vice versa.
Another friend was also there – new to me. One of the marvellous things about Beauty is that she is surrounded by beautiful people. Lady C is another of the threesome club – three children, all with disabilities. Another statuesque lady from whom I am certain there is much to learn. The sixth of our group was Beauty’s daughter – a young lady of lovely grace and dignity at the beginning of her adult journey and beginning that journey with beautiful humility.
We laughed!! A lot!! Laughter yoga is all about breathing deeply. As Beauty was keen to have us understand, real and forced laughter are identical in terms of their benefits to our physical and mental health. And the wonderful thing is that forced laughter in a group always leads to real laughter! Little Man was fantastic at provoking quite real laughter, and Sweet Girl loved the games we played. By the end of the session we all had big smiles on our faces, and aching bellies from the laughing!
Much of my social life tends to happen online. Many of those friends I hold closest in my heart are simply too far to maintain a relationship as close and alive as I want in the “real” world. So my “facebook” world is alive with women and men who open their hearts and share in the beauty and the pain of their lives and mine. I consider that completely real. However, if I get the chance to reach out of the online world and touch their hand I grab it. One day, I hope to travel to America where I have a cluster of such kindred spirits. But I know deep down that such a physical meeting is by no means necessary to a true and meaningful friendship. Tonight I was fortunate enough to spend time with one true friend, and discover another one!
And we laughed the pains of the week away and bolstered each other up for the week ahead. There are times when I truly love the human spirit…
- What happened when I tried laughter yoga… (pinkbananashoes.wordpress.com)
- Laugh Out Loud! (inspiredjunkies.com)
At the age of eleven weeks, he was diagnosed with Juvenile Myelomonocytic Leukaemia: JMML.
Statistics for this childhood cancer are grim. As near as makes no never mind to 0% without treatment. 50-60% with bone marrow transplant. And that doesn’t take you into the post transplant journey (which doctors do not talk about at the point of diagnosis).
We were so, so lucky. Nine years on, it still takes my breath away that we saw the doctors we did, when we did. That Tom’s Noonan syndrome was diagnosed by the haematologists at Great Ormond Street months before the geneticists agreed. That their experience in this world of incredibly rare disease had led them to take risks: to wait rather than rush to transplant. And then to apply that experience to make a judgement call on another patient. they told us that they wanted to wait. They thought that Little Man might be one of the very few children to stabilise.
Without the oral chemotherapy and the initial treatment he wouldn’t have survived.
With a bone marrow transplant, he may well have died (it’s a very very risky procedure).
He got the chemotherapy, we waited… and waited…
Little Man Tom has a lot of other medical issues to deal with – he sees many specialist doctors at one of the world’s top children’s hospitals.
But he is nine years old, and still very much alive. The leukaemia stabilised.
Nine years ago, today we were enjoying a supposedly happy healthy baby boy. And yet, my maternal sixth sense was on high alert. I had been nervous, anxious, on edge throughout my pregnancy, and this continued despite post natal checks. I had nothing concrete to base this anxiety on, but something felt wrong. I still berate myself for not acting sooner though I know full well that nothing would have been picked up before it was.
Little Man was taken into hospital on Halloween 2003, for observation due to failure to thrive. Late that night we were called in, and told that the most likely diagnosis was leukaemia with an unrelated congenital heart defect. Time has not dulled the emotional impact of that evening and I suspect it never will.
It is very difficult, after such an experience, to dismiss that maternal sixth sense when it buzzes. I could list a considerable number of events when I have felt it again, put my concerns to the right professionals only to be “reassured” and sent on my way. In each and every case, time has shown that my instinct was right.
So, I may be a little paranoid, I may be wrong.
But I am buzzing again. And I hate it because after nine years of the buzzes being far from insignificant, they now spell worry quite quickly.
Little Man Tom is unwell. He is smiley, and there is nothing especially noticeable about his behaviour. My mother’s eye feels that he looks ill and rather gaunt. Argh… I want to say scrawny, and that is exactly the word that was in my head two days before that JMML diagnosis. With the word scrawny comes a level of fear that is hard to ignore or bury.
Common sense says that this is most likely autumn and winter combined with difficulties getting enough of the right nourishment into him.
Sixth sense wants to check his spleen and liver and get a blood test to check his white cells, monocytes and platelets… I will be having a little feel of his belly this evening because that’s easy, non-invasive and may just give me a little peace of mind.
Sense has already sent an email to the feeding therapist which will hopefully get an answer tomorrow or at the least on Tuesday.
Asking the nurse to come and do a blood test seems over the top.. but maybe I simply need to phone her and talk to her about what’s going on.
My experience of childhood cancer is mild, almost innocent and almost fraudulent.
And yet here I am, nine years after diagnosis, about six or seven years since seeing a haematologist, and the fear of JMML is as raw when it re-emerges as it was back then. Childhood cancer wounds, and it simply does not scar well.
I haven’t written about it this month of awareness, and I’ve experienced a little guilt about that. But if anything, this post may be effective in a different way. When we hear of a family affected by childhood cancer we can be forgiven for thinking that this will mean a dreadful, painful odyssey for the family, but that with luck they will get through.
We don’t get through. We learn to live in a different world, on a different path. However “easy” the journey, however “successful” the outcome, we are wounded, and few of us will ever scar. We just carry that wound with us and hopefully find a way to use it for some good.
September is Childhood Cancer Awareness month.
I’m going to be writing stuff you don’t want to read, to hear, to think about.
Because when you know it, you can’t pretend it doesn’t happen.
And every time you look at your child or any child, you’ll know.
And if you know, you might just do something, however little.
If you do, I will have won.
And childhood cancer will have taken a loss.
It’s building in my head and in my heart, and in the next few days, its coming out…