Author: Ginny Walker

Well, in the last two weeks, there is much to be grateful for.

We stayed in the QA in Portsmouth for a couple of weeks in the end, while Ben’s counts slowly recovered and were looked after by the wonderful team there.  He even got to spend some time out over last weekend, which was unimaginably wonderful to see, given the journey we’ve been on.

While at the QA, James and I learned a lot about feeds and pumps and timings for meds and feel fairly confident now, although the pumps are different at Piam Brown.

Ben’s birthday was spent in hospital this year and although it was not something we’d planned in months gone by, he did have a good day and was overwhelmed by the birthday wishes and Lego overload!

On the matter of kindness; we’ve been so touched by the cards, the words, the gifts and positivity shown towards Ben and our family as a whole; all from family, friends and strangers, too, who have just wanted to offer a kind word or a magazine to cheer up our little boy. It has continued to give us strength and courage along this journey.

The Appeal run by DKMS over social media last weekend has raised awareness about Ben’s story and given hope to many others who are facing a situation either similar to, or the same as us.  To date, there have been 273k views and 1.5k shares and yesterday, DKMS got in touch with us to let us know that the Appeal has encouraged over 800 people to become registered blood stem cell donors.  To say that James and I are completely in awe and humbled by the response is an absolute understatement.

Thank you so much from the bottom of our hearts.  YOU are responsible for these amazing results.  It’s your courage, your positivity, your determination to make a change that’s going to make a difference to so many.

I managed a girlie night out to the cinema with my eldest over the weekend and we watched Mamma Mia – Here We Go Again, which was really special.  This situation has turned our world upside down and the girls in all of this, have been coping with an awful lot and it’s so nice to be able to spend quality time with them when possible.

The reason I was able to manage this, was because my sister is helping keep a level of consistency with the children and was at home with our youngest, while Ben was having a boy’s night with Daddy.  We have had such support from our families and we are so grateful and my sister’s endeavour to keep things as normal as possible for the children at this time, has not gone un-noted!

We are now into second round and on the second day of five of a high dose chemotherapy because of the healing path we are on.  Chemo can affect the patient in so many different ways and sometimes it can be during the treatment itself and other times, it can be a week or two following the treatment.  At this present moment, Ben is taking everything in his stride.  His body is coping with quite a lot at the moment and already the tiredness is kicking in and it seems the appetite is already starting to become affected, but we are all remaining positive and taking it one step at a time.  You don’t always sleep too well during these days and nights, but you get used to it.

Coming back into Piam Brown on Monday, we felt both different and a little daunted like we did when we first arrived back in June.  However, after only a couple of hours, it almost felt like we hadn’t been away.  We also feel more prepared this time, knowing more about what to expect over the coming days and weeks.

The staff here all welcomed us back again with warm smiles; and the familiar faces of the families who are all going on their own unique journeys together with us, gave us a sense of comfort, of courage, of hope.

As we have touched on before in an earlier post, it is a privilege to spend time with your children and it is, has been and continues to be a privilege to meet and get to know the special little souls on Piam Brown Ward.

And so, we continue to live in gratitude for every blessing and every moment of humour and silliness we find in each day – and we do.  There’s always something to be grateful for, even on the toughest of days.  Today has been a good day.

 

 

 

 

Hi, it’s Ben’s youngest sister.  It’s hard for me to see Ben sick and upset, but always if he’s happy, I’m happy because Ben is my game buddy and nearly every day at hospital, me and Ben play on games like the Nintendo Switch and X-Box and a PS4 and our 2Ds.  It’s fun because we like doing funny things.

Okay.  Before I say goodbye, I’d like to say thank you everyone who’s helping Ben and seeing this blog.  Ok bye 🙂

 

Thank goodness for Douglas Adams!  What a writer and the Hitchhiker’s Guide is a staple for Ben, who loves drifting off to sleep with it on at night on his headphones or even listening to the Hexagonal Phase, recently on R4.  The humour and light-hearted fun of the script is very calming for Ben.

Ben had another bone marrow aspirate this week in Piam Brown and this is where the brilliant script writing skills of Douglas Adams comes in.  On arrival into the Anaesthetic Room, after such a long wait (we were last on the list), Ben was understandably nervous.  However, within a few moments, he’d asked to play something through his headphones to take his mind off things.  The anaesthetist agreed it was fine to do that and peered over at what Ben had picked on his Dad’s phone … Fit the 1st … ‘Ah,’ he said … ‘I know what that is … The Hitchhiker’s Guide to the Galaxy.  Don’t Panic…’ and Ben drifted off and as he listened to the adventures of Arthur Dent in the land of Nod, his procedure was completed with no drama and was over in a flash.

We’d barely picked up any lunch, before we were called back into Recovery to find Ben a little sleepy, but wanting to eat and drink a little, too.

Once back in the Parents’ Room, Ben began eating a little at a time.  Unfortunately, after the anaesthetic, it was difficult to keep anything down, so with a little anti-sickness given, we were then on our way back to Portsmouth for a rest.

The team at the QA have been incredibly accommodating and welcoming.  We were here when we were given an initial diagnosis and so returning to see some familiar faces (and new, too) has been very reassuring.

Ben is settling in, probably too much with his laptop, Lego and magazines!  Still, it’s all good.

On Wednesday, I started to learn how to aspirate and give medicines and set up the feeds Ben needs to keep his weight up and the amino acids going in to his stomach.  It is a fairly straightforward process, but you have to remember to do things in a particular order!  I hope I did okay first time round, more to learn today!  Thankfully, Ben coped very well and didn’t flinch with mummy faffing around, when it’s normally a very competent and professional nurse doing the job!  Hopefully I will be more along the lines of competent this afternoon!

When Daddy popped in later in the evening to pick up Rose, he told Ben about the day he’d had and that he’d actually met Dirk Maggs, producer extraordinaire from the Hitchhiker’s Guide … well, that was very exciting news for the Hitchhiker’s Guide fans in the room!

It’s been an interesting week.

Although it is more likely that a sibling will be a match, it’s not always that likely.  There was a one in four chance that one of the girls could help Ben, but we found out on Wednesday last week, that unfortunately, neither the girls or James or I were a match for him.

James and I sat in contemplation for a short while, after explaining this to the children.  Ben found the whole thing rather amusing and has remained buoyant and we decided to start a mini campaign to find a bone marrow donor and raise awareness, which has so far received more support than we could ever imagine, which has been amazing!  Keep signing up, folks, you are wonderful, thank you.

Ben has managed this week to play with some Lego, even if that meant laying down to do it.  He’s managed a little food and some drink while on a break from the feeding tube, although not quite enough fluid on some days.  It’s been a bit of a balancing act trying to increase his calories, while ensuring he can still have enough time to eat normal food in between the feeds, as too much or too little can make him feel a tad under the weather and it’s baby steps.  This morning (Sunday) he has enjoyed five chicken nuggets and a piece of apple for breakfast and as far as we are concerned, that’s a great start to the day.

On Friday evening, he managed a movie (Cars 3) and a little pizza with his sisters and some of the children on the ward, which was quite a step forward for Ben and as his blood counts slowly come up again between treatments, this will happen more and more, we hope.

In all honesty, it’s very hard to describe the true reality of what actually happens day to day on this ward and the emotional rollercoaster you find yourself on; laughing one minute and making a cup of tea in the kitchen the next, just to shed a few quiet tears.  Seeing the children so strong, is humbling.  These children are so special, so amazing, so courageous and it makes us, as parents, the strongest we could ever be.  You make fast friends in these situations and we become the supporters and cheerleaders for our little champions here.

Situations can change in a matter of moments and you have to be poised to deal with them and in those times, be strong, too; like picking up the hair from the pillow as it falls out.  That’s a stark reminder of the journey you’re on and why you stay strong.  Ben is strong and thankfully has the best sense of humour and he is in control of his hair at the moment and is leaving it as it is and taking things day by day.

After five weeks, the routine, (which is no routine really – just managing day by day in this new ‘normal’ we find ourselves in) is slowly becoming easier.  We all take things day by day, hour by hour, minute by minute.

Yesterday afternoon, we were told that Ben’s neutrophils are moving up very slowly, which is good news, though keeping him infection-free is still crucial.

The bed is needed here, so on Monday, we will move to Portsmouth QA, then come back on Tuesday briefly for a bone marrow aspirate.  This will tell us how Ben’s cells are doing after the first round of magic medicine.  We will then be settled in Portsmouth for a few days, before starting the second round of chemo again back in Southampton hopefully fairly soon after.

A bit of a juggle this week, but we’ll manage inevitably, as we do and will keep our fingers crossed for a match and for the counts to continue moving up and his weight to do the same in the coming days.

www.anthonynolan.org – under 30 and www.dkms.org.uk/en for over 30.

Thank you as ever, your support means the world to our family xxx

 

So, our Ben, the boy who loves Lego and Steam trains and Guardians of the Galaxy; Minecraft, researching film theories; the boy who loves making us all laugh with his Star Wars jokes, or snuggling up with the woofers and cats at home, the brother who adores his two sisters to the ends of the earth (even though he wouldn’t tell them openly!) and loves a tickle fight at the end of the day; the boy who has plans to be a journalist, Lego designer or to write and direct his own movies, needs a bone marrow transplant.

Today, we received the news that neither myself, James, Ella or Rose are a match for our Beeps. He’s ten years old and is already coping with so much that no parent would ever wish their child to go through.

This is not the sort of journey in life you ever imagine you’ll be taking, but suddenly, without warning, you’re in it and living it. Our Ben, our Ella and our Rose are our world.

The fabulous team here at Piam Brown are already on the case, looking at the National Register, then they’ll go to the European Register and beyond and we may hear of a potential match in as little as a week’s time.

In the meantime, James and I have decided to do what we can from our side to find that special someone.

And so, I’m making this appeal directly to you, the person who is reading this right now. If you are not yet on the bone marrow register and you are fit and healthy, please don’t hesitate and sign up to either:

www.anthonynolan.org

or

www.dkms.org.uk/en

It’s just a mouth swab, then a blood test if you look like a potential match.

I’m the first to talk about random acts of kindness and how much it makes a difference. It turns out, this random act of kindness could save a life, maybe our Ben’s or someone else who really needs it, too.

Are you our magical match?

I’m going to say thank you on behalf of our family, as I’m imagining he’s already cured and we are so grateful.

Well, a lot has been happening in the beautiful bubble of the Piam Brown Ward in the last week.

The girls, myself and James had a blood test and are now waiting to see if one of us is a match for Ben.  It’ll take a few days, but we hope for some news in the next week or two.  The girls did so amazingly well and got through the blood test with no drama and enjoyed a little piece of lemon cake after.  Ben was very impressed there was no upset.  He didn’t enjoy needles or cannulas when he had to have them and was very pleased to see his sisters totally okay after their test.

Ben enjoyed a surprise gift of an epic Lego Minecraft Mountain set from some of our dear friends, Richard and Nicky.  He’d been feeling rather poorly the morning that arrived and the minute it showed up, he found the strength to get out of bed and spent hours and hours (and I mean HOURS!) sat on the floor concentrating and building.  The instructions were about 350 pages long and he spent about eight hours the first day and then finally went to bed about 11.00 pm and the next morning, was up at 7.00 am to finish building the last four bags worth of Lego.  There were a total of 24 bags and he finished the last four by 8.30 am.  All the nurses think we should challenge Lego to suggest a build to do that will keep him occupied, as he is so quick at building!

Another achievement for Beeps this week has been having a feeding tube fitted.  This is normal at this point, to ensure all the right nutrients are going in to the body as all this magical medicine is a delicate balance on the system.  Ben, in general, has been coping with an awful lot in recent days, but admirably and he continues to surprise us with his inner strength.  Just the same strength we see being shown in the girls.

Ben’s loved receiving messages and cards and letters, thank you so much and if you can spare the time, please keep them coming.  It can be really boring with mum, dad and the girls sometimes, so a friendly word, an encouraging sentence a bit of cheerleading from the sides is much appreciated.

Kindness is a gentle word, yet an abundant one.  We have been overwhelmed by the abundance of love, support and kindness shown to Ben and our family in recent weeks.

Today, Friday 20 July, marks a full month from when we stepped into the Paediatric walk-in for a blood test on 20 June, which started this whole journey of recovery.  Thank you for your kindness.

 

Hi all, we thought it might be fun to see how many positive messages we could have sent to Ben … I’ll just put it out there and see what happens; please comment below …

Today is a day like any other in our ward.  It’s the weekend, so it’s slightly quieter, but still the parents gather in the kitchen for a catch up, the Nurses and Doctors do their rounds and the eternal ideas to keep Ben busy with Minecraft, Movies, Lego, reading, laughing, eating and drinking continues.  He’s not eating so well today, but that’s to be expected.  His fluids are good, so that’s something to be thankful for.

Yesterday, he had a platelet transfusion and today, he’s had his antibiotics and at the moment, all is well.  It’s a good day.

We have been overwhelmed by the love and support shown by friends and family at the start of this journey and the response to the blog has been so wonderful.  Your messages of support are really giving our family the strength and positivity to keep going.

Many of you have sent personal messages to myself and James asking what you can do and there is something I’ve just spoken to Ben about.  He would absolutely love to receive postcards, letters, pictures from all around the world.  Tell us what you’re up to, offer a word of support, a kind word, tell us something exciting or something funny.  Every ten year old wants to have fun and laugh the day away!  Get in touch.  I know this will benefit not only our boy, but his sisters, too.  Let’s live in gratitude and see what we can achieve!

In addition, many of you have also discussed the possibility of registering as a bone marrow donor and for those 30 and under, please go to www.anthonynolan.org or for those over 30, please go to www.dkms.org.uk/en/register-now

I know I’ve already said this before, but this journey wasn’t on our radar.  We have helped others over the years and never imagined for a moment, it was part of our family’s story to be going through this journey and yet, here we are.  Anything you can do to help, from writing, sending hope, letters, pictures, ideas for him to create a new Lego alternative build … even your own alternative builds!  Go for it!

Ben is in Piam Brown Ward for the moment, in Southampton General Hospital, Southampton, Hampshire SO16 6YD.

We’d really love to hear from you! xxx