Home for christmas!

Honestly, I am exhausted. A deep blissful exhaustion that slides along easily with my joy. Being home is heavenly. My exhaustion permeates my body and I am once again too tired to do the mighty Bede justice or even find the photos that do him justice but I also feel like so many of you want to know whats going on and I owe you, his supporters, that. So I hope this doesn’t sound like a boring recount. These words may not give life to the joyful spectacle that is bede at the moment, the unpredictable elation mixed with peace.  These words are the best I have got  for now so here goes…

I can’t explain how Bede recovered. One day he was a shell of his normal self with the gentlest of lights, the next he was laughing at us, the next he was nearly off all supportive measures and then, a while later, we were home.

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Bede’s first proper roll. In to cuddle Dad
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and all of a sudden, overnight, he’s back!

I suppose the expectation would be that posting on new years night I would take this opportunity to reflect on the happenings of this past year but I wont be.

The main reason being that I feel like that is something to do at an end point and our family is still in the midst of our mission.

What I didn’t put in  my last blog was that the doctors had said that it was time to stop Bede’s chemotherapy. We did not agree with the decision, I was upset and anxious. Roy was calm and determined to get second opinions. We both felt the decision was wrong. Our guts told us it was wrong, the logical part of us said it was wrong. We did not understand why we could not give Bede a break let the toxicity recede and try again.

We had his final scan to show us where his tumour was at the end of treatment.

He achieved another 20-25% shrinkage. That’s right another, this is the second consecutive scan he has achieved 20-25% shrinkage.. We have now more than doubled our goal for the whole year.

Trying to wrap our heads around this and thinking of how we would tell our parents and even of this very blog post I said
“Just so I understand, he is now doing better than any one could have predicted. Is that right?”
“Oh yes” was the reply.

The world shifted under our feet again and now the doctors were talking about clinical trials, surgery and more chemo and suddenly there were options where before they had assured us there were none.

Bede will not let us give up on him.

On the 8th of January we have a brain scan. If in this break the tumour has not grown we continue to treat. The risk is that there is no way to measure if the toxicity in his body that caused so many problems during the last cycle has receeded. I have a knot in my stomach waiting for the news.

The doctors tell us they have never given a child with this kind of tumour on this kind of treatment a break and then recommenced. The risk is we could kill him.

That weighs heavily on me.  As always with Bede there is balance. I need to balance bravery and fight and courage with measured reserve. Will we go ahead?
Roy says yes and I am scared.

If the tumour has grown during this break that means we are putting Bede through all of this only to buy a few weeks before growth. We would not continue to give him chemotherapy if that happens. To continue would be undeserving of a boy who has given so much and who deserves as much of the world as we can give him.

Now we are at home and  life is sweet. We have been here a while.

Bede is smiling a lot. in fact he will be lying on his own on the floor in the quiet and just start laughing a rambunctious belly laugh.
He spends a lot of his time laughing.

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bede 13

He draws his legs up underneath him, pushes his little bottom in the air, lifts his head so high in what is a strong attempt at crawling. He then topples over onto his side and lies there seemingly contemplating his position. He is strengthening, developing and growing.

He plays. Santa came but his brother gave him his favourite toy. A little piano that Bede will happily sit there and play with for half an hour.

Santa came!

Santa came!

He swims! He has been in the pool a couple of times now and the last time he was so relaxed he rested his little hands on my chest and stretched his body and kicked those little legs.

first swim

laughing during his first swim

He rests. Peacefully and calmly. Undistrrbed by beeps and buzzers and temperatures and blood pressures. He lays in the sun or in the middle of our big  soft bed and he rests. It is divine.

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He cries. He cries with agency now not distress. He cries to communicate. I want my mum, I want my dad, I want a feeding session, I want to play.

He talks. He spends so much time trying to mimic the words I say or just having the longest conversations

He does all of these things and I delight.

 

I delight at two brothers exploring their santa toys together. I delight at our baby laughing his way through new years eve dinner. Chuckling at kisses. Trying to crawl. Exceeding expectation. Resilient and filled with hope and love and strength and light and when people ask me to reflect on 2013 it can not be summed up by facebook’s new “year in review” app. It is not easily summarised. It is delight and it is gratitude and it is hope.

2013 has gifted me with being more of myself than I have ever been, being the kind of person that I would hope I would one day have the opportunity to become, new friendships, deeper friendships, an unshakeable faith in my marriage, a continued gift in G and a brand new gift in Bede.

2013 has on the whole, been a blessing.

Sitting in the hospital room after the scan that revealed Bede’s tumour we were given weeks. We have just celebrated our first Christmas, bede’s firt new years and tomorrow, the 2nd of January, a day that we prayed we would make. Bede’s first birthday.

While these firsts are beyond sweet. My mind cant help but flit forward. Soon we will be making seconds and I think that had been beyond my imagination. Soon it will be the second time he’s been at his parent’s birthday and after that his second easter.

The love and positivity and prayers you have gifted us with in 2013 were beyond our wildest hopes. My greatest hope for 2014 is that you will continue to marvel at our boy with us, continue to wrap him up in hope and love and prayers. I am sure they have carried us this far.

I haven’t given much thought to my new years resolution but I suppose it is to remain resolute, unwavering, determined to defy the odds with a little boy who is more than capable of doing just that and laughing while he does it.

From our family to yours wishing you a Happy New Year!

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12 thoughts on “Home for christmas!

  1. What an exciting and spiritually uplifting blog! I can appreciate your exhaustion, and want you to know that thoughts and prayers are with you all and continuing. I imagine I speak for all Team Bede supporters when I say that we are all absolutely delighted that you and Bede are having lots of firsts – first Christmas, laughs and relaxation time. What a wonderful Christmas and New Year’s gift for you all! May this time of joy and peace continue, and when it comes time to make those tough decisions, we know that you will go with your heart and soul and do what you believe is the best thing for Bede. Trust that you will be given direction that is right for you all and step out in faith with confidence. Team Bede will be right behind you all the way! Blessings and hugs, Helen Harris xxx

  2. Hap Hap Happy 1st Birthday Bede!!!, i really don’t have fitting words for the occasion Is but I send you all much love.
    Bede boy you enjoy your day, I hope it is as beautiful as you are.
    Keep going little man xoxoxo

  3. To all the wonderful people that have supported Issy and Roy in so many ways throughout the last year, I have watched and seen first hand how that support has shored them up and enabled them to continue. From comments here to months of work on fundraisers and the huge spectrum between, each gesture has been invaluable to them. So from Bede’s grandmother, thank you all of you and please, please, ‘keep it coming’.

  4. Wow… that is good news to hear about the shrinkage.
    Go bede… such determination and strength from you. What a beautiful boy he is.
    We are praying for you young man and god bless you all
    Happy new year and hope you had a wonderful Christmas xx

  5. So beautifully written Issy. Happy birthday to a beautiful boy and well done to an amazing family. I wish u al much love, health and happiness in 2014 and we will be here to give our love, support and friendship always. Love Naomi ,Dayle, Ashton, Carter and Mackenzie Bryant xx

  6. Sending you all the love and best wishes in the world Bede for a very, very special 1st birthday. It is so uplifting to hear how well he is travelling and that you were able to spend Christmas together, at home as a family. Happy new year to you all xx

  7. Happy Birthday, Bede. It is so wonderful to hear about you laughing and enjoying life so much. Huge hugs to you all. I will be hoping that things are on the up for your amazing wee boy.

  8. Happy birthday Bede! You are a true inspiration. You remind me to enjoy every day to the fullest! We are here cheering you on and it is a happy day seeing your smiling face. Lots of love to your whole family. I think of you often and I’m so glad you are home and doing so well.

  9. As always an inspiration – you and your entire family.
    Wishing you all am amazing and special year, you deserve that and more.
    Lil Bede, you are an angel and we are blessed to just know of you and your strength.
    Keep believing in this lil man- he can teach us all a lot.
    Xx

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