My son has been leaking protein into his urine, scarring his kidneys, for the last nine months and probably longer than that too. He has managed a couple of days at zero or trace now and again in the last two or three months but it never lasted and he had a miserable summer holiday with sickness. It’s been incredibly hard on him and on us all.
But – I hardly dare say it, for fear of jinxing it – for the last ten days he has been in medicated remission! And we couldn’t be happier.
I had begun to think we might never see this day, especially after the second opinion on his biopsy came back from Yale saying it was almost certainly genetic FSGS and therefore he probably wouldn’t respond to any medication.
He has managed every day at school so far this term (until today when he just couldn’t get out of bed with tiredness) and he has been feeling better than he has in a long, long time.
For anyone who reads here regularly, or who has a child with nephrotic syndrome, or who knows me personally you will know how much this means to me, to William, to us as a family. Thank you to everyone who has prayed for us, offered us support, listened to me cry or left comments here, even when you may not have known what to say.
William tapered his prednisolone on Monday to 5mg every other day – the lowest he will probably go now in order to hopefully keep the Ciclosporin working. It feels tentative, this whole remission thing, but every day in remission is a day longer before transplant.
And now I’m off to give all my boys a big hug and have a wonderful day. Because life is about today - and we’ll worry about the future when we get there.
Photo: kevygee
{ 17 comments… read them below or add one }
That is great news!
Dear Ella
I’ve only just discovered your blog and have just read this piece and then your other posts about William and FSGS which were so incredibly touching and heart-breaking and loving and so much more.
I feel a little intrusive being here, but I did want to say I’m so happy that you’ve at last had some better news and I hope things continue to improve and that William feels well and happy.
Best wishes to you all – Dawn
Yippee! I’m glad there’s a bit of light at the end of the tunnel.
Am so very very happy for your great news!!!!!
What fantastic news! I am so glad for William and for all of you.
Phew! That is great news. We’ve never met but I am sending big hugs to all of you. (Hope you don’t mind).
Oh that’s wonderful news, Ella. Long may it continue.
Tasha xxx
Oh honey – I’m so pleased for you all. Here’s to continued remission. xxx
Thank you all.
Today was another day at trace, so that’s eleven days in remission now (not that I’m counting or anything!)
Hi Ella–
I come here often discovering you through the BlogHer ads (we’re in the same “network”–the links underneath the ads.)
I lurk a lot, but never comment. I’m de-lurking to tell you how much I’m happy for you and your family. I’ll pray for continued relief for you and yours.
Award for you at mine x
This is absolutely wonderful news. I’ve been reading your blog for a while and have occasionally commented, so I know how difficult this has all been for you. Hope things continue to improve and the future looks a lot more hopeful. You deserve this great news.
I’m so glad you’ve had a bit of good news. Sending positive thoughts and hoping that William remains well x
Oh Ella, that’s wonderful news! xx
Hi Ella. Firstly I am happy that William is getting better by the day. The way you handled the situation is commendable. Keep the courage high.
Thank you all so much for your lovely comments. Sadly William’s remission hasn’t continued but he is in partial remission which is still sort of good news. x
Not intrusive at all – thank you for your kind words.
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