03/05/2020
The Good, the Bad and the Ugly.
It has been a year today since Odin was diagnosed with Opsoclonus Myoclonus Ataxia Syndrome.
To say it has been a long year would be an understatement .
As a family unit we have adapted and definitely had some rubbish days ! However, because of this challenge I feel we are tighter than we have ever been.
I will never forget the neurologist telling me
“ that it’s not what they first thought it was , it’s something called Opsoclonus Myoclonus and please don’t google it, please go quickly home pack a bag for you both and come straight back to the hospital as treatment will start tonight “.
My head was in a spin and I didn’t know what to feel ( I still really don’t ) and how on earth to pronounce the disease .
How could my perfectly healthy 17 month year old suddenly be so dreadfully sick? I rang my partner at work and told him what the doctor had said . I really don’t remember what I relayed to him other than “you need to come home something is seriously wrong with Odin and we need to go to hospital now”. Thankfully, my sister was with me to calm me and to go and pick him up.
I ran around the house and packed frantically for Odin and I for a hospital stay, not knowing what was ahead of us and not knowing how long we’d be away from home and from our other little boy, Zedekiah .
Treatment started that night . Odin screamed, bit and hit the hospital down. It took his two parents and four nurses to restrain him whilst putting his canula in ready for treatment .
That night, doctors started Odin on ivig, steroids and the next day rituximab to wipe out his bcells .
Odin’s opsolclonus (eye movements ) and myoclonus (shakes) were so severe by now that he’d wake every hour from his sleep disoriented and in a rage attack, which led to him vomiting all over everyone who stood in his path ( a big thank you to those nurses).
The following weeks were filled with scans for tumors, infusions, xrays, lumbar punctures, canulas, ultrasounds , oral steroids......
Odin has had to learn how to sit , crawl, stand , walk , hold his head up, chew, sleep properly and speak again.
Odin , although his speech is still quite delayed, is doing really well and is defying all the odds. However, we will not know if there was any permanent damage from his OMS onset for another couple of years .
Odin is extraordinarily lucky and has had an amazing crew of professionals on board; neurologists, oncologists , nurses, OT, PT, psych , and speech pathologists who I cannot thank enough ! Thank you .
Not to mention the fantastic people we work with , principals, executive staff and collegues , who have been so accommodating and understanding . Thank you .
And last by not least a big thank you to our amazing family and friends. Without your love and support we’d be lost.
Odin , what a year it has been ! We have seen some crazy bad and ugly times , but have had some really good times too!
You are my hero little guy 💙💙
