Hi folks, it’s Angie. Today I’m honoured to share a guest post from another friend of mine, Lara. You might remember Lara and her beautiful daughter Amber from my post Benign isn’t fine, when at six years old Amber...
Hi folks, it’s Angie. Today I’m honoured to share a guest post from another friend of mine, Lara. You might remember Lara and her beautiful daughter Amber from my post Benign isn’t fine, when at six years old Amber was going through chemotherapy to treat her low grade brain tumour. Sadly, in December this year, scans showed that Amber’s brain tumour had grown and developed multiple cysts causing further problems. Amber then needed a major operation to relieve growing pressure in her brain. Now, just over one year on, Lara’s family of four have flown to Oklahoma, USA on the recommendation of the NHS.
Having held off on radiotherapy for as long as possible due to the potential for damaging side effects, the proton beam radiation available in the US is more likely to be kind to surrounding brain tissue – giving Amber better prospects when it comes to the long-term side effects of treatment.
Moving to Oklahoma for three months is of course a major upheaval for the family; not least because Lara and her partner Mark have had to leave behind their business – a busy sandwich shop – in others’ capable hands. Experiencing a whirlwind year, Lara has started penning her own blog – Two kids, one brain tumour and a sandwich short of a shop – to keep family and friends updated on their (literal and metaphorical) journey.
I love that in Lara’s blog she’s able to juxtapose the reality of brain tumour treatment alongside the realities of day-to-day life; eating as a family, getting the washing done, day trips, bed time routines. Those things don’t stop just because you’ve got hospital visits, and it’s enlightening to hear the full story of how proton beam radiation is fitting in with everything else in life.
I’ve included Lara’s latest post below, but please do visit 2kids1braintumourandasandwich.blogspot.co.uk to keep up-to-date with the latest from Lara and Amber.
From me and all the #braintumourwarriors, we’re wishing Amber all the best with her treatment and sending positive vibes across the pond x
*****
Evening!!!
Its 18.45 here, we have just enjoyed a delicious meal, one of the three provided every week in the hotel, chicken enchiladas and a big fresh salad. I must confess i’m washing it down with a bud too!! Its been 70 degrees here today with very little wind, lack of wind here is a real novelty, but it has felt to much warmer so this drink is ideal for the mood i’m feeling. Which to be honest, right now, is pretty relaxed i’m pleased to say.
Last week continued with the previous ones theme of Amber reacting to treatment with so much positivity. She has built a great rapport with the staff who administer her protons she will run and hug them, skipping off through the great glass doors without looking back. The maturity of what she dances off to do, mixed with the lightness in her step shows what a remarkable child she is. She is so carefree here having this done. There are no direct threats to her, no pain, as yet no huge consequences of her daily 20 minute lay down strapped to a piece of technology so advanced you have to practically give over to fantasy to understand how it works. Her doctor and nurse love her attitude she will snuggle the nurse who thinks she is a sweetie whilst she secretly sticks her tongue out at the consultant who has the measure of her cheek.
Fridays dose was the first one we experienced some difficulty at in the form of a breakdown of the machine. We were called in early, she was take off and they begun their magic, only to come back, complete with the customary waffle face pattern, with the news there was a problem. Two hours later, two bags of complementary popcorn and nearly every fireman Sam clip on you tube, it was back up and running! I tell you I was much happier waiting around in the sun with free refreshments than I ever have been at the hospital at home. I’m gonna be a terrible diva when i’m back. Whadda’ya mean i already am!!!! Amber was cool and calm, more than happy to receive an extra bead for her collection for waiting.
Aside from the treatment we yet again have been making the most of being here. Exploring downtown, in the entertainment area known as Bricktown, playing arcade games and Crazy Golf in the warm March sun. Amber bagged a hole in one at the 18th hole. She seemed quite content making her way round the course which was decorated with fountains and waterfalls which cleverly formed part of several of the holes. One member of the party hit her ball too hard meaning it went over the fence and she watched, sulkily, as it rolled down a hill and into a storm grate, game overrr!
Here in Oklahoma there are some stunning lakes which we have gravitated towards and loved watching the kids spend a while throwing stones and cavorting round the edge. The red dirt that makes up the coastline is a bit of a nightmare to clean from your clothing and is sometimes used as a dye for fabric, i see why now! We have seen more birds and creatures so different from home. Its common to see huge buzzards and eagles in the air, effortlessly gliding, circling, i get a bit hypnotized by their moves. The vest space here gives you such a sense of freedom. I love it. When we are at home feel so bound by work and the hospital, school and routine, to be able to breath in this openness is a welcome feeling.
Some routines will remain whilst we are here and that is getting the small people to bed at a good time, so me and my now luke warm beer are off.
We love your messages and wishes. Missing our family and friends but we are all thriving off this red dirt and fresh air. Spring is here and we will continue to make like the bulbs and grow in the sun together.
loads of Oklahoman (is that a word) love and smiles xxxxxxxxxxxxxxxxxx
