New treatments for Elliot
(Very belated) Happy New Year, everyone! It’s been a while since our last update, and a fair few things have happened, some positive, some less so. We’ve had a lovely Christmas with all four grandparents, and visitors from Seattle.
The Nativis Voyager
We’ve had a lot of lovely people reach out to us since we’ve started sharing Elliot’s journey (thank you to everyone who has shared his story, contributed to Steve’s fundraiser for Elliot, or contributed in any other way in Elliot’s name), including one of Willierose’s friends from Seattle. He’d just been dealing with a company there called Nativis that’s working on a very interesting device. Voyager generates ultra-low frequency energy and is worn as a headband or halo. The science behind is frankly over my head (and on the controversial end, at least as far as traditional treatment providers are concerned), but early results in adults with GBM are promising, extending patient survival by 3–5 months. That doesn’t sound like much, but when you consider that GBM has an overall survival period of about 9 months (like DIPG), it sounds a lot better. At least one girl with DIPG started using it last year, so we reached out.
Willierose’s friend put us in touch with a representative from Nativis, who then liaised with our oncologist. Soon after, the device was shipped to us and we’ve been using it for about seven weeks now. Elliot wears it 24 hours a day, every day (except for showers) and so far, has tolerated it well. As far as we’re aware, he is the only DIPG kid in Australia using it.
Less good news
Around the same time we received the Voyager, Elliot’s breathing began to change. It became much more laboured, and he’d pause breathing for up to 6 seconds, then take a big breath and petering out again. This would go on for up to two hours sometimes. The pall care team advised us that it sounds like his breathing is obstructed and that this could be caused by a range of things: secretions in his mouth that he’s unable to swallow, mechanical obstruction, meaning that part of his body is getting in the way, or tumour progression. We were warned that the latter is likely, especially if changing his posture did not have a significant effect. It sometimes does, but often not, which of course has us very worried.
We’ve known from the start that DIPG eventually affects the heart and/or breathing and that neither is good news.
Another thing that’s been difficult for us is how much harder communication has become. For the past 10 weeks or so, Elliot hasn’t been able to nod, shake his head or point with his finger. The only way he can now talk with us is by looking up to say ‘yes’, which means that we can only ask affirmative questions. We’re getting better at this, but as I’m sure you can imagine, it’s not easy. He gets frustrated more easily more often, mostly because it’s harder for us to find out what he’s trying to tell us. He can still laugh and cry, and we try to make him laugh as much as we can.
Kinesiology
An old friend of mine has also put us in touch with a kinesiologist whose workshop she participated in about 10 years ago. She said that he is very talented and practising in Melbourne. He’s mostly retired now but upon hearing about Elliot, he agreed to work with him a couple of hours each week, with me as a proxy. We’ve completed seven sessions and so far so good!
We don’t know if it’s the Voyager, the kinesiology, a combination of the two or other factors, but while he still struggles at times, Elliot seems a little more present and his breathing better. He hasn’t had any more episodes as he did a month ago where pauses went up to 6 seconds between breaths.
What most affects his breathing now is when we have to do big moves, such as carrying him up or down the stairs, as this now brings him a great amount of discomfort. Two of the many side-effects of the steroids he’s been taking for about half a year now are thinned skin and more fragile bones, so we have to try to be as gentle as possible with moving him. Also, since he sits all day, we have to be more aware of preventing pressure sores.
2019
We don’t know what this year has in store for us. We hope and pray for the best, but at the same time, we fear the worst. Thank you for your continued support.
The Gautsch family
Next: Rest at last
