Unfortunately I will need to take a bit of time off from this blog. After months of misdiagnoses and a change in GPs, my precious son is in Starship Hospital about to have major surgery. He already has had one invasive procedure and the big one comes tomorrow. It is absolutely heart-breaking to see him asleep on the table surrounded by surgeons and hooked up to tubes. He is in a lot of pain but is trying to be strong even though he, his mom and I are all frightened by what might happen in the worst case. We are doing our best to reassure him but fear sometimes get the better of mum and I.
If you can spare a thought for the Pablo clan, it will be appreciated. We feel that although we have confidence in the medical team at Starship, we need all the help that we can get.
Thanks.
Oh Paul, I am so sorry. Shocked. No-one wishes this on anyone. May things go well tomorrow. You have our thoughts and prayers. Take good care. Kia Kaha! Barbara
Thoughts are with him, you and your wife. All the best.
Aroha from our family, to yours, Paul.
Good luck Paul. I hope your son makes a full & speedy recovery.
Paul I am shocked and saddened to hear about your dear son. You are in my
thoughts and prayers. Stay strong and keep the faith.
I wish you well at this very difficult time for you and your family.
Hope isn’t a ‘thing’ but sometimes it’s the best that we have
So sorry to hear this. Hope it all turns out well.
I’ve only just now read this, Pablo. My thoughts are with you all at this terribly stressful time. It’s far easier coping with personal illness than it ever is with a serious illness (or any illness) in one’s children.
I hope for the very best, positive outcome for him.
I’ll be thinking of him, and you all.
Thanks everyone, for your support and good wishes. Here is a quick update.
After a 5+ hour operation involving a team of cardio-thoracic and pediatric surgeons, they removed a lemon sized mass from my sons sternum. It had been pressing on his heart and lungs, which was causing reflected pain in his shoulder (his initial complaint) and eventual and worsening shortness of breath. As it turns out, the pressure and fluid from the mass collapsed his left lung, which is amazing because up until July he was playing soccer, running cross-country and riding his bike. That was part of the reason for repeated misdiagnoses of his ailment by the GPs who originally saw him and why no one ever thought to take a chest X-ray along with the shoulder scans. Thank goodness the new GP saw an anomaly in his blood scan and sent us to Starship immediately, where a chest X-ray confirmed the worst and yet solved the problem of cause. We are grateful to the new GP but feel guilty that we did not read his signs correctly when he started complaining of pain in May. We wound up treating him for the wrong thing until the new GP intervened earlier this month.
The reflected pain is common in most chest tutors (this one of the anterior sternum), but the mystery is that it is not one of the “normal” benign or malign tutors but instead appears to be a reactive mass to a foreign object. Since the kid has never been hospitalised before and has never complained of any throat pain, it would be extremely rare for him to have had something lodged in his esophagus or trachea that migrated out and attached to his sternum. In fact, I find that to be impossible, but the surgeons have decided to send his tissue samples to pathologists overseas as well as in NZ because they consider the mass to be rather unique. The mass would have continued to grow and was already compromising his upper rib cage, and squeezing his aortic arteries, but they found no obvious foreign matter anywhere they looked. So the mystery remains…
In the end Starship and its medical team saved the boy’s life because if left untreated he would have died a painful and slow death. He now has the mother of all scars and currently is in a world of pain, full of drains and tubes, and suffering side-effects from the cocktail of opiates and sedatives that he has been given. He is extremely anxious about having his tubes and drains pulled because they hurt, so it is excruciating to have to watch him as that happens. His physical torment is our emotional anguish.
His recovery will be a long process, especially since they want to find out what the mass is before finishing the process (yes, there is more to come but we just do not know what at this point until the pathology reports come in). We are hoping that he can come home before the school term starts in 2 weeks (because he loves his school and classmates), but have been told to not plan on that happening. The important thing is that he is alive and if all goes well will fully recover. I keep telling him that years from now this ordeal will just be a yarn that he can tell to is mates and children.
Thanks for putting up with my scribble. I find that writing my thoughts on this event helps reduce my stress levels.
Hello Paul, Thank you for letting us know what is happening with your son. Thank heavens the new GP took the action they did! It’s for that reason I never mind seeing a locum as they look at things with fresh eyes. I am sure, because your son is young and was very fit & healthy up until recently, he’ll recover fully and well.
This will be a very distressing time for you all (I’ve been in a similar situation with an adult child with cancer while studying overseas). In my family member’s case there were plenty of ups & downs but then more ups and life eventually became quite normal again. He has been well for over 20 years now. I remember feeling tremendous guilt at the time and for several years after, wondering if anything I’d done, or hadn’t done, had caused my son’s illness. I think this is a common reaction but, of course, there’s nothing to feel guilty about. It’s just part of the package of being a parent, I think.
My very best to you all, and especially to your lad for a complete and speedy recovery.
Thanks so much Paul for the update. I had been wishing and wondering if you might post something – am so pleased that all sounds to be well, recoverable …. You, your wife, and your son all need to be patient. So much thanks go also to the supremely skilled surgeons and specialists at Starship … What a relief it must be for you all.
It sounds an extremely obscure condition, so I am not surprised it was overlooked.
For now, you must all rest up, and feel blessed.
Take good care.
May the Force look after you all!
A big AROHA from us all :-)
Paul, thinking of your whole family as you deal with the worry and uncertainty. One of the doctors who treated my sons gave me the good advice to trust my instincts and to remember no-one knows a child more than his parents.
I found this helpful after my daughter was diagnosed with ovarian cancer – it applies just as much to any other illness or challenge: https://www.latimes.com/opinion/op-ed/la-xpm-2013-apr-07-la-oe-0407-silk-ring-theory-20130407-story.html
Thanks Ele,
That was very helpful and I shall share with my wife (and in-laws!). In a weird way I am lucky because I have no family in NZ other than my wife’s, which is good because my side (in the US) tend to be self-absorbed, opinionated and loud. Cheers!