Explaining to Chiane what is lying ahead
Good afternoon/good evening everyone.
Today was a day filled with lots of reading and writing questions down as we do have a lot of questions.
We sat down today with Chiane and we started to prepare her for the road ahead. We explained that she will become very sick and very ill before she will get better.
We did a lot of drawings today and she understand the concept of “the goodies” and “the baddies” inside our body… She understands red blood cells, white blood cells, platelets, stem cells and what they do in your body…the fluids in her brain and the “signal” it sends down her spine…. Etc etc….she got it all and we explained that the cancer is killing it and if the doctors don’t fix it and get rid of the ‘baddies’ she will stop walking… The medicine will fight the baddies and that is what will make her very sick. She understands the doctors are there to help her and although they will make her very sick it is important so that she can get better…
She got it all in the end and she knows that her bump in her head is called cancer….
We explained that she will get a lot of hormones that will produce a lot of stem cells, that a very clever machine will harvest them by pumping the blood from her body through the machine and back in to her body… And she would be able to see what stem cells look like, as it will be collected and pumped in to a bag that is connected to the machine… She knows she will lose weight and her hair….
It is extremely important that she KNOWS what will happen so that there is no “Surprises” and her loosing trust in us as parents or the doctors. The child therapists told us the children that come prepared cope much better than the ones that don’t know what lays ahead… We do not want her to think “why are the doctors making me so sick and why does mommy or daddy just stand there and not help me to get better or take me home… Chiane got special story books that are aimed at the above as well and we are working through it with her… How is she taking it all? VERY WELL!!!!!! We are so surprised how much of it she got and that she is ok with it… Reality will be different yes, but at least she will know what is coming!
We have also received a phone call from the head of neuro department… They will need to operate again…
She will go in for yet another MRI, possibly Thursday, to use a “stealth programme” to take pictures in 3D of the cancer… This programme will be fed into a computer that guides the surgeons through computers when they do the operation to cut to a 1000′s of a millimetre…why? Because they will get dangerously close to the “healthy brain” and they can not make a mistake… We have been told that it will be cut so close to the healthy tissue, that it would not be possible to see it with the human eye and therefore they need to use the stealth guidance program to help “be their eyes”…. And then start chemotherapy as soon as her body allows it, to stop the cancer from growing again. It’s hard for us to understand how it could have grown so quickly again??? But they explained it was much more aggressive than what they thought and the MRI results compared to last week shocked them. So we will let you know when and what will happen…
Chiane was ok with it all, except the fact the she will lose her hair. Chiane and I agreed on something. She cut my hair off and then I shaved it with a razor… To show her that I’m still the same “daddy” and that hair is something that will grow back! Once she can see that it starts to grow again, I promised her I will then start shaving it every other day so that my head stays smooth until her hair starts to grow and we will then grow it together.
Chiane will start losing her hair in 3 weeks time… By then she will be used to me not having any hair and that it is not “so bad”! I told her I have no grey hair anymore and everyone will think we are twins once she has no hair and we can rub our heads with oil to make them shine like stars! She enjoyed cutting my hair!
Estian didn’t ever realise I had no hair until we got home and he touched my head! He laughed a lot and they both keep touching my bold head!
We will continue to prepare Chiane so that she is as ready as she can be for when it starts… Estian… He is doing very well and we give them both as much attention and love as possible!