Remember last year? I posted this photo blog about our first year with cancer. Well here we are again, another year has passed and somehow that is quite unbelievable. Two freaking years.
I was thinking of doing a photo blog again but I have regularly added pictures this year so you have seen most of the notable ones. Whereas last year we had lots of pictures of Vega in hospital, or at least with tubes sticking out of her, looking through my library this year we have very few of those. This year, we have many pictures of Vega eating or Vega sleeping. The year has been full of repetition, weight issues and tiredness.
Second Cancerversary feels very different to the first. I feel like a veteran today, bearing the weight of the last two years, but also the heritage of experience and the knowledge and calm that comes with it. Long gone are the days that our day to day cancer journey is freaking me out. Instead I have forgotten how it was before all this.
But this year will be different. Whereas last year I was faced with a year of Maintenance, this year will see an end to all this. Vega is going off treatment at the end of May. I can’t deny that I am scared. I can feel my anxiety growing each time I give Vega her chemo, each time we tick off one more week of steroids. I am worried about it coming back, now, tomorrow, next month, next year, or in three years.
Vega’s body is suffering more and more from the treatment and each time she has her chemo the side effects are worse and take longer to fade. She seems to be at the end of her reserves, if there even is such a thing. She is complaining about pain, everywhere, her legs, hips, arms, hands, neck… She sleeps a lot and whines. She is shy and withdrawn and her legs are weak so she is limping again and falling a lot. She truly has had enough. I am being told all this is normal. The treatment for Leukaemia is long and children do deteriorate throughout.
Just a little while longer, little bear.
I am thinking about our other little cancer friends, especially the boys- Hi Max, Dorian and also Ewan and Fraser, who we have never met, but all the same they share this journey with us. Boys are being treated a year longer than girls and I think of you all so often. I don’t have the right to complain really.
Vega is on steroids this week, hence my glum disposition I presume. (Also the rain- what is it with the rain?) But the last year has not been all bad. As a matter of fact I dare say it was so much better than our first year with the big C.
So here is to our second cancerversary, to a new year, to endings and beginnings, to strength and recovery.
And because photos are nice, here are a few.
allvega 
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx i am very moved by yours, vega’s and the rest of your family’s display of strength and valiance
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Oh Kathi, Its been so tough! I really hope this year will be better than last and you will be able to put it behind you very soon. :(( Love and hugs.
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From one veteran to another – another milestone reached and love and hugs for strength in legs to return. Roll on May and no more nasty drugs. With you every step of the way and love to you all. xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
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Thank you for thinking of Ewan in your blog, we are still following your journey!
We reach the 2 year mark in May, with another year to go. Ewan will be 4 in a few weeks time, he has started pre-school, has a new baby sister (Freya, 15 weeks old!) and by all accounts has been doing really well. I on the other hand carry the world on my shoulders, as I’m sure you can relate to! The routine of maintenance is certainly welcome after the intensity of what came before, but the worry is no less. I’ve said to many people how nice it is to see him going about his day as a “normal” 3 year old would, going to nursery, having play dates etc. And every time if say it, I think how far from normal we actually still are. Now, as I sit here obsessively checking his temperature after he came home from nursery with another sniffle… Every family meal time or snack time with friends as he yet again eats nothing (the NG tube is gone but his diet remains primarily supplemented as he will not eat)… Steroid week which seems to arrive quicker & quicker each month… And not to mention the ever present fear of relapse…
I thought of you also during our last admission to hospital with a fever. Thankfully it was only for 2 days, but our baby girl had arrived so for the 1st time I had to deal with being apart from one or other of my children. I was torn apart, ripped in two. I can only imagine how much harder it has made your journey with having to deal with that from the start.
I am glad you enjoyed your trip to Scotland. The Malcolm Sargent house is less than 5 minutes away from my parents house, they stay in Troon. This is probably part of the reason why we have never taken advantage of the getaway as the area is just like a 2nd home to us anyway! We holidayed in London in August last year. Although in a remarkable case of bad timing, the only week we could manage was the week Ewan was on steroids… We made the most of it & enjoyed it, but it was far from relaxing!
As always I wish you & your family all the best and look forward to hearing more of your story in the future.
Laura x
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Hi Laura, thanks for the update. Welcome Freya, I agree with Grant a beautiful name. I feel everything you say, steroids seem to come quicker and quicker indeed. I think it has to do with the fact that it takes Vega longer to recover from each block every time. It all gets a bit blurry, doesn’t it? I know the torn feeling. It was much harder when Alys was younger, but still remains and I don’t think this will change. However, I am rewarded each time we actually are together- it feels very special. Sending you the stamina and endurance to continue. Who said “this too shall pass” again?
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I to still follow your story intently and thanks for thinking about us all.
Fraser is due his last does of Vincristine tomorrow to be finished with Delayed intensification, moving onto Maintenance treatment when his counts return.
Fingers crossed he has been really good these past few months, without any problems. We are happy to leave the intensive treatment behind but still very apprehensive of maintenance and its new kind of normal. I think once we are past the fight we start to feel a different kind of fear, during intense treatment we could keep him indoors away from any ailments, now in maintenance the thought is with school and social activates which all come with the chance of picking up bugs! Don’t get me wrong Fraser is really looking forward to getting back to his friends but it’s us parents that need to coupe with these new stresses.
I’m sure once you reach the end of treatment it’s another type of fear all over again. I cling on to words you have said previously in your journey Kathi.
“Be strong. Be optimistic and hopeful and stay away from the scholar articles”
All the best and good wishes,
Grant.
p.s. Congratulations to Laura on your new arrival – Freya is a lovely name.
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Thanks Grant 🙂
Glad to hear Fraser is keeping well. Keeping my fingers crossed for his neutrophils to pick up soon so you can get started on maintenance. I seem to remember Ewan’s always took an age to recover inbetween blocks.
We’ll maybe start seeing you around clinic once you are on maintenance. We’re possibly in tomorrow too, although more likely to be Thursday, for Ewan’s next lumbar puncture.
Best wishes to you all.
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Wow, Grant. Congratulation on ending the dreadful DI. Welcome to Maintenance.Thank you for reminding me of my own words…
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Hi Kathi. So nice of you to mention Max and the other boys. We’ve had a good January, last admission was over New Year. So feels a little bit like being back to “normal” which of course isn’t really normal at all. I’m so pleased Vega will soon finish her treatment but I understand your worry as well. I feel our worries about Max the last couple of months has been so much about his behaviour and the way he’s changed. Max still doesn’t really speak at all, just some words really or repeating what we say. So it makes me think when read what you write about all the pain Vega is going through, Max can’t tell us what he’s going through so no surprise really that he’s acting the the way he does with meltdowns and lying awake for hours at night and all the rest. I wish he could tell me.
Keep strong Vega and the other boys.
Eva
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