Gratitude

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.