Another forced break.

Well, the time has come yet again for my son to go back into Starship for another major surgery (the fourth in five months). The mass in his chest is growing and has enveloped his left carotid artery as well as his phrenic nerve and assorted other blood-carrying vessels and nerve linkages. His left chest cavity has filled with fluid, putting pressure on his left lung and causing him pain. After many consultations the surgeons feel there is no other option but to try and excise the mass. That will involve a cardiac team as well as an internal medicine team, both led by senior surgeons. The surgery is scheduled for this upcoming Monday and will last a long time as it is a full open chest affair. Needless to say, my wife and I are anxious and, to be perfectly honest, scared. I have a sense of hope but also of foreboding.

We have not told our son about what is about to happen because he is already anxious and stressed out after hearing the bad news (that of needing another surgery) in early Feb. We have consulted with a senior Starship child psychologist and she agrees that waiting until Saturday morning is the best way to break the news. That way he will only have one sleepless night before we head to the hospital on Sunday afternoon (they need to do a lot of prep on him so we head to Starship the day before the surgery).

Basically this is a repeat of what the boy went through late last Sept., when the hard mass on his sternum was removed. But the more fibrous/gelatinous “tendrils” that have branched out along his upper left rib cage have continued to grow rather than ceased growing, much to the surgeon’s dismay. Again, this is a very rare and aggressive type of benign cyst–some of you may remember that it is a congenital multilocular thymic cyst that should have naturally atrophied when he was a toddler–so the surgeons are discovering things on the go, and so far they have not been good. The remaining mass must come out if my kid has any chance of a normal life.

There are all sort of side effects in play, but for the moment the plan is to try and resect the mass without damaging what it is clinging to. It is a complicated and risky process.

The irony is that my son is actually doing quite well at the moment, acting like a normal kid, running around and doing his best to be active. We believe that this is more a case of him trying to be tough in the hope that exercise and pain management will make the fluid pressure on his left lung go away (as was initially hoped last year). Alas that is not what has happened and his brave front notwithstanding, only surgery can help him. We admire his resolve and, to use that much abused term, resilience in the face of this adversity. He is strong and in some respects wise beyond his years, but it is the strength and wisdom of the battle scarred at a very young age.

Assuming that he makes it through the surgery and recovers, we are concerned about the psychological impact this will have on him. Let’s just say that, from being a kid who could get vaccinated and undergo blood tests without a whimper, he now does not like hospitals and is afraid of needles and drains (which are very painful when removed from his torso). I just hope that we can offer the support he needs to get his head right if and once this is over.

I have had some bad moments in my life but looking at the boy’s face when he was told the news that he would need another big surgery is one of the worst things that I have experienced. It was compounded by the lead surgeon’s look when he told us because it had a sense of hopelessness written all over it. He is a good and honest man, and he simply said that because of its rarity and complicated presentation, they are very much in the dark about how to proceed and are just doing what they think is best after extensive consultations with colleagues in NZ and abroad. Apparently this is a case that no-one wants.

All of which is to say that my mind is not on political blogging at the moment, or much anything else for that matter. So I will take a break from KP, focus my attention on my wife and child, and put my faith and trust in the staff at Starship. They have been excellent so far and understand what we are going through.

Please keep my boy in your thoughts. I will check back in when I can.

12 thoughts on “Another forced break.

  1. I am so sorry for you and your family. I can’t imagine your feelings. Or, worse, I can.

  2. I am so terribly sorry to read this news, Pablo. I will be thinking of you all, especially your boy, and hoping for a successful outcome for him with this operation and for long term return to full health.

    My very best wishes,

    Di Trower

  3. This is not the news we wanted to hear Pablo. I am so sorry.
    I have been quiet about this recently, as I went through something like this – a benign growth, but in a different part of my body, some years ago in my 40’s. They are called ‘benign’ but they are not benign in the effect they have on the surrounding organs and tissue, as they continue to grow. It took over 6 months to work through and solve the condition with me, and it was only because of a complication, that saw me transferred to Auckland Hospital – and there, to meet 2 surgeons who I can only describe as fearless and gifted, willing to work outside the square, that saw the whole thing resolved. They too asked if they could write it up.
    This is harder, your son is young but at least old enough to talk to and to have some understanding …
    I wish you all the best. You have the best people, there in Auckland.
    I will think of you Monday (interestingly enough my grandson is having a small surgery there tomorrow – minor by comparison, and routine – but no-one wishes surgery on any child of any age.)

    Our prayers and thoughts are with you all.
    Take care and kia kaha.

    Barbara Thomas

  4. Very sad to hear this. May you find strength at this time. Barbara Matthews.

  5. Sincere sympathy to you all. I’ve watched all three of my children undergo medical procedures including lumbar punctures and surgery and know how hard it is a a parent to watch and support. This is written from the point of view of someone with cancer, but applies to any illness or major challenge. :

    You have to support your son, but you must also accept support – someone has to care for the carer.

  6. I am truly sorry to hear this Pablo. I had not written a comment on your previous posts on this subject because words felt so empty.

    Perhaps I’m going too far now, but frankly your descriptions frighten the hell out of me as I have three kids in their early twenties and have come to realise that – as my older sister has said of her kids – “You never stop worrying about them”. Thus, as someone said earlier, I can all too well imagine what you’re going through.

    I can only wish your son, you and your wife, the best of luck in this lousy situation.

  7. Thanks all, especially to Ele and Tom for crossing the ideological divide that separates us. Very decent of you. It was also good to hear from Jim, my old KP colleague Anita and of course regular correspondents Barbara T., Di and Barbara M. My son took the news pretty well today and spent most of the AM playing with his best mate. Now we pack up and spend family time together before heading to Starship tomorrow. Fingers crossed after that.

  8. Thank you Pablo, so good to hear.

    We all wish you the best; and that all goes well and that we will hear some good news, soon.
    With much aroha …May you and your son, your wife, stand tall, unafraid. Kia kaha!


  9. All the best Pablo, the worst feeling I have had was handing my son, literally, over to a Surgeon, also at Starship, so can empathise to some extent.

    Hopeful good wishes.

  10. Pingback: I said a little prayer – No Minister

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