Today Sanna took the girls to the park when Bianca was able to leave after her IV meds. Sanna said that Bianca was a bit tired and at one point she was sitting at the top of the slide, just sitting.
Sanna: "what's wrong?"
Bianca went down to Sanna.
Bianca: "I was waiting for somebody to sit next to me"
Sanna: "but Caitlyn is too little"
Bianca: "no not you or Caitlyn, I was looking for a friend"
This is the heartbreaking part of this journey. She hasn't been able to have friends for such a long time. The past 10 months she has maybe only had 3 play dates or so and each time there is always some reason why she cannot be with other children. She is only 4 and her circle of friends consists of her Daddy, Mommy, Caitlyn and Sanna. That's when you realise how very unfair this journey is. How cruel and callous cancer can be.
But we are blessed in so many ways, regardless the sacrifices. We are blessed because we have each other, because we are able to find reasons to laugh and smile and because we have learned to slow down and spend as much time together as we can. Even though our journey has been very hard with lots of things happening, Bianca still copes pretty well with her treatment. We are blessed because in our own small way we are able to inspire others, create awareness and try and make a difference.
I can't wait for Friday. That is when we will possibly be discharged. It will be so good when we are all together in the same house again. Sanna is also flying back to Sweden on Monday morning, so it will be really nice if Bianca can be at home this weekend to be able to spend the last few days with Sanna. We will miss Sanna so very much. She absolutely feels like one of the family. She was a blessing sent to us when we needed her the most. Our Mary Poppins (except as far as I know she doesn't really jump through chalk paintings or have tea parties on the roof as far as I know).
This week is absolutely dragging on and I can sum it up as tiring, exhausting and frustrating.
Tiring because Caitlyn hasn't slept through the night this week. We suspect either teething or growth spurt.
Exhausting because the last few weeks we've juggled spending time at the hospital, going home for visits, trying to fit in work and all over again.
Frustrating because now that our locum has left it feels as if we are back to square 1. Until our oncologists arrive in 6 months' time we will have ordinary paediatricians with limited oncology experience looking after our children and decisions will be made by the specialists in Christchurch via teleconference and all we can hope is that they will notice every little sign and hint to be able to communicate this to the specialist in Christchurch. And then once a week a specialist from Christchurch will come through and have only that day to catch up with new and existing patients, staff and management, go through notes and whatever.
So pretty much 1 step forward, 10 steps back...
Sanna: "what's wrong?"
Bianca went down to Sanna.
Bianca: "I was waiting for somebody to sit next to me"
Sanna: "but Caitlyn is too little"
Bianca: "no not you or Caitlyn, I was looking for a friend"
This is the heartbreaking part of this journey. She hasn't been able to have friends for such a long time. The past 10 months she has maybe only had 3 play dates or so and each time there is always some reason why she cannot be with other children. She is only 4 and her circle of friends consists of her Daddy, Mommy, Caitlyn and Sanna. That's when you realise how very unfair this journey is. How cruel and callous cancer can be.
But we are blessed in so many ways, regardless the sacrifices. We are blessed because we have each other, because we are able to find reasons to laugh and smile and because we have learned to slow down and spend as much time together as we can. Even though our journey has been very hard with lots of things happening, Bianca still copes pretty well with her treatment. We are blessed because in our own small way we are able to inspire others, create awareness and try and make a difference.
I can't wait for Friday. That is when we will possibly be discharged. It will be so good when we are all together in the same house again. Sanna is also flying back to Sweden on Monday morning, so it will be really nice if Bianca can be at home this weekend to be able to spend the last few days with Sanna. We will miss Sanna so very much. She absolutely feels like one of the family. She was a blessing sent to us when we needed her the most. Our Mary Poppins (except as far as I know she doesn't really jump through chalk paintings or have tea parties on the roof as far as I know).
This week is absolutely dragging on and I can sum it up as tiring, exhausting and frustrating.
Tiring because Caitlyn hasn't slept through the night this week. We suspect either teething or growth spurt.
Exhausting because the last few weeks we've juggled spending time at the hospital, going home for visits, trying to fit in work and all over again.
Frustrating because now that our locum has left it feels as if we are back to square 1. Until our oncologists arrive in 6 months' time we will have ordinary paediatricians with limited oncology experience looking after our children and decisions will be made by the specialists in Christchurch via teleconference and all we can hope is that they will notice every little sign and hint to be able to communicate this to the specialist in Christchurch. And then once a week a specialist from Christchurch will come through and have only that day to catch up with new and existing patients, staff and management, go through notes and whatever.
So pretty much 1 step forward, 10 steps back...
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1 comment:
Dear Lea, Whilst you have been frustrated this week
and you are both rushing about, you have been wise to take each precious moment as it comes along with your little family. Please be assured of my prayers, that our Heavenly Father knows and feels your pain. Bianca is such a beautiful little girl and a great blessing to you. We don't always understand the curved balls thrown at us. You are both doing such a great job. With love, Felicity
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