Dealing with Rapid Weight Gain in my Daughter after her Brain Tumour

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Happy colouring in her pretty new shoes

I wrote this a few weeks ago…thought it was time I shared it:

It’s blessed that Hana is still so young and blissfully unaware of her increased body size. The ‘weight’ of her possible future lies solely on the backs of the adults who love her so ferociously.

I wonder what people think when they see me pushing her around the shops in a stroller, (thank god she still fits in).** Oh, she does walk too, but she tires very quickly. They look down at her then up at me, probably wondering what the hell I’m doing, letting such a big girl be so ‘lazy’. Try lugging an extra 20-30 kgs around everyday all of a sudden and see how tired you quickly get – I feel like wearing this on a T-Shirt. Or, ‘Yeah, so she got tired, you would be too if you had a BRAIN TUMOUR…’   on a hand-held banner to shake in people’s faces.

**actually, I got a wheelchair this week. Sick of being judged and the have been struggling with the stroller that can’t take Hana’s weight anymore.

The Birthday Dress

On Hana’s sixth birthday, since she was still very confused and unable to even remember that it was her birthday, I took her to the department store to choose a new dress. She chose a beautiful cotton dress, we got one for an 8 year old, I hoped that even with some weight gain that it would fit her for a good while. Eight weeks on and the dress will no longer close at the back. That beautiful dress, something else in her diminishing wardrobe that now doesn’t fit her.

The Bikini

She out grew her old bikini 8 weeks post op, getting a new one from Speedo was a nightmare. The swimming costumes were out of the question, the girth she needed meant the length was way too long. We settled on a bikini – made for a 10 year old.

‘Can I get the  next size up?’ I hand the age 8 bikini through the fitting room doors.

‘Age 10 you mean?’  

‘Yes please.’

‘But Mummy I’m only 6, why do I need an age 10 bikini?’ She asks innocently, lisping on ‘6’.

I swallow and know that my eyes are suddenly bloodshot with unshed tears, my eyes do that a lot at the moment. ‘Because of your brain tumour sweets, your belly has got a little big bigger. ‘ I rub her gorgeous, soft tummy, her ‘marshmallow’ belly that I’ve always loved. ‘But it’ll go back down, I promise. It’ll just take some time.’

Later at the pool, she says proudly to my husband, “My new bikini is for a seven year old Daddy!” I close my eyes in agony for a second, there was no need to correct her…let her think it. Let her believe it.

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The new shoes

The Pretty Shoes 

Today we had to buy new shoes. Because her feet have become so full and chubby, there was no range of pretty shoes to choose from. Pretty shoes are only for skinny feet, it appears. We were lucky enough to get a wide Startite pair for school, but pretty shoes for wide, chubby feet? Forget it. As she sat there wearing her new school shoes her face crumpled, turned red and she welled up with tears,

‘I want some pretty shoes mummy.’

I hug her tightly and say, ‘We WILL get you some pretty shoes, let’s have another look at what choices we have.’

The ‘choices’ are only one pair of shoes that come in silver and patent black. They aren’t as cushy or supportive as I’d like, even for out of school stuff but I have no alternative. She tries on the silver – they only have that colour in one size and, of course, they are too small. There is only one choice left, the patent black. She puts on the patent black. They fit, thank god they fit. Hana walks around the shop proudly in her shiny black shoes.

‘Do you like them,’ I ask her concerned, I was sure she wanted a bright pink or purple pair with sparkly bits or something like that.

‘Yes, I like them,’ she nods, grinning.

And now she’s sitting next to me at the table, colouring in with her shiny patent black shoes, looking something like Shirley Temple in Curly Top – and she’s happy.

If her weight gain continues how long will this oblivious happiness remain? At what point will she be aware of her increased body size in relation to her peers? When will she feel overweight for the first time? We all know this society, it is one that ostracises people who are overweight,  one that regards them cruelly on the streets, smirks and comments rudely as they pass by.

The war continues, I am fighting it everyday.

For more on our Brain Tumour journey and our battle with the onset of Hypothalamic Obesity have a look under the Brain Tumour category, thanks for reading x

 

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  5 comments for “Dealing with Rapid Weight Gain in my Daughter after her Brain Tumour

  1. Leigh
    June 8, 2014 at 7:48 am

    You are supporting your daughter amazingly Naomi. Tears well up in my eyes when I read about the weight gain, as my 16yo daughter is facing this same struggle. She bought a dress for her formal in March this year and can no longer fit it, emotionally that is devastating for us all. You are a strong woman Naomi, everyday will bring new challenges and even achievements (no matter how big or small), you are an inspiration for all parents who need to fight for their children. Please keep us posted on how the Oxytocin trial is going. Tomorrow we are discussing this with our Dr. Lets see what tomorrow brings xoxo

  2. Marilyn Godfrey, gran to Hadlee, age 13, who had surgery March 17, 2014 and is in proton radiation therapy now.
    June 9, 2014 at 3:55 am

    I agree, you are an awesome mom.

  3. Frogee
    June 12, 2014 at 5:52 am

    Naomi,
    Tears well in my eyes too. I am sorry for what your family is dealing with. Know that I continue to pray for you all. Keep up the good fight.

  4. Amanda Nason
    June 12, 2014 at 7:36 pm

    I can’t think what to say! All I can do is admire your bravery and send heartfelt wishes for a happy and healthy future for you and your family x

  5. June 13, 2014 at 4:04 am

    I was a junior senior in high school when i was finally diagnosed. 16 years old. Had surgery. Then the docs put me on steroids as “routine procedure” after a brain surgery or after a cranio . I gained weight terribly . I felt uncomfortable. bloated. My belly grew to 30 inches and beyond. I thought – how weird is this!!?? I felt bad. I begged my mom to ask them about it. Every time they told het I needed it because my pituitary was operated on. I asked again- i felt so uncomfortable!! She asked them again to test me and they said it was dangerous for me to go off the steroids to be tested. Next year we asked
    . Not willingly they agreed to test. I went off steroids , they tested and I had normal cortisol levels. So- i went off steroids and I started loosing all the weight- back to my pre surgery weight pretty much. I gained 14 pounds in 1 week in the hospital from steroids. I was about 84 pounds pre SX. gained 14 LB from steroids in hospital and continued to gain . was on steroids 1 -year or more until they finally agreed they would test me. went off steroids when testing showed i could produce some cortisol on my own. Stayed 104 pounds after that for most of my college life. Im 46 now- i did gain a few from messing around with hormone imbalances and inactivity prolly 115 now. anyways – point is- check your steroids!!!

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