The face of childhood cancer

Cancer Child

My blog posts are as rare as our hospital stays nowadays. Indeed we have not been inpatient at Kings since the beginning of January, and I have even lost the feeling of sitting on a time bomb and taken to the relaxed frame of mind of “whatever happens, happens”. Vega has started the third Maintenance cycle in the end of March, she had her 12 weekly lumbar puncture last week and we are looking forward to another week of steroids come Monday. By now we are so used to it all, and with the lack of any hospital stays, I dare say this is as close to normal as we could get. Normal for us, including a pretty straight forward day at nursery, school runs, park visits, but also whipping out the rubber gloves every evening and drawing up a few mls of poison, lovingly named ‘fruity meds’ by Vega.

Ray and I have just discovered that we seemed to have lost all our photos taken since January. We take a lot of photos, and with both Lyra’s and Alys’ birthdays in March, this is quite a tragedy. But in a strange way this loss is reflective of my state of mind these last few months. I seem to live in a daze, each day blending into the next, made up of blood results and smelly nappies. My days have been as lost as my photographs. Vega’s treatment now has catapulted me into a kind of no-mans-land. We have passed the acute stage, the drama, and have entered a boring, tiring sort of stage. Vega is looking considerably better, as you can see from the photo above, taken today.

When people think of children with cancer, Facebook images of ill, pale, skinny looking children come to mind. Bald, often with a feeding tube and holding up a sign saying “I have cancer and I can still smile” or such things. No one thinks of chubby, rosy cheeked little girls with cool pixie cuts. And yet, this too is a child with cancer, still neutropenic most of the time, on a wide range of medication and with many other minor issues yet no less major for this child. People look at us often, in the past they would see me with three children, all girls and smile or make a comment about me having my hands full or such. Then Vega did look ill for a while and you could see that people were trying to figure out what might be going on. Why is the child bald? She must have cancer. Now as time passes and the hair is coming back, people are still looking and still try to figure things out. Why has the one child out of the three short hair? Why is she walking funny? Maybe even why is she so chubby? I think it won’t be long before no one would ever notice anything odd or different about Vega.

Childhood cancer has many faces. Sometimes what you see on the outside is not the best representation of what is going on on the inside. Some days are real good and some not so good. Some days are quite a daze and some stick in your mind, whether you have photographs to remind you of them or not.

Cancer child 2

 

Advertisements

6 thoughts on “The face of childhood cancer

  1. and into the woods we go……………………. the forest of haze…………

    I was just thinking yesterday about the strangeness and difficulty of a life that always has hospitals in the picture but that aren’t always on view – outside indications – i now get so many comments of ‘your hair is back to normal’, which i guess it is, but that even the feel of it doesn’t touch how different my inside feels. limping along with Vega and walking funny and letting life finds it’s own rhythm.

    i hear the tiredness and know it intimately – last week in hydro i was so knackered so i got in the pool and just floated for a few mins. i hope (see there’s that friggin word again kathi lol) you can continue to rest somehow in this part of ‘maintenance’ – what a funny bloody term that is? and settle into the sort of ordinary moments.

    star trek keeps popping into my mind (hey it’s early for me at 9.25 am!) – Captain Kirk and crew in some other new landscape/planet waiting to discover all it has to offer, but having been beamed down so many times before.

    move slowly in the daze beautiful mother!

    sending you hugs (am off for a blood test now for mondays treatment sigh)

    loving you always and as always touched by your words. sue xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

  2. I find the way you deal with the day to day equally as amazing as how you deal with the more tricky stuff – i’s equally as hard in it’s own little ways, and I admire your strength to keep on keeping on! Always here to lighten the load any way we can! x x x x x x x x x x x

  3. What a very beautiful and moving post. I am in awe of your ability to write so eloquently and honestly about your experiences – your strength and talent is a huge asset to you and your family. My love coming your way to you and your girls (and man) x

  4. Danke Liebe Kathi fuer Deine Message…
    es ist so wichtig fuer uns,news von euch zu haben.

    zur gleichen zeit ist es interessant fuer mich, ich habe zwei kinder,nicht drei….sie haben kein cancer,wir haben keine regular hospital besuche etc…,was alles riesen gross ist,und ich kann trotzdem irgent wie mich mit deinen geschichten identifizieren,wo ich denke ja,das kenne ich….
    mmh natuerlich haben wir unsere eigenen lebens komplicationen,die ihr zum beispiel nicht habt.
    und ich denke das unsere lebens challenges sind unsere ‘persoenlich’ und wenn ich deine observierungen lese,fuehle ich das unsere persoenlichen geschichten auch zur gleichen zeit irgentwie collective sind….
    es ist interessant wie du schreibst vom shock zur einem hauch von gelangweilter routine…
    und die vergangenden erbalssende momente…

    Matilda fragt oft nach vega,lyra and little sister baby alys….
    wir wuerden euch so gerne bald sehen

    Liebe Gruesse
    D

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s