Yesterday we had our meeting with the oncologist. It was a long and pretty grim and difficult discussion. Firstly she told us that she had presented Massimo’s case at the UK Children’s Cancer Group as mentioned in our entry on 15th January. There were lots of people there and the response she got ranged from one extreme to other. Some doctors felt that she shouldn’t be treating Massimo at all. Their feeling was that the quality of life that Massimo could expect should the tumour disappear, shrink or otherwise be effected, would be such that it would be kinder and better to allow Massimo to enjoy what life he has left without further intervention. At the other end of the spectrum there were plenty of doctors who felt that she was doing the right thing and that we should give the chemo he is on a little longer to have an effect and take it from there. We were therefore asked what we wanted to do, whether withdraw treatment or continue.
The oncologist explained that once the tumour is gone or is shrunk to a reasonable size there would be severe tracheal malacia left. This means that his trachea will never be as strong and rigid as it should be, it will always be floppy and difficult to maintain open and Massimo will always be severely disabled by it. What the actual ins and outs of tracheal malacia are and what the current methods of assisting patients with this problem are, is something we will need to discuss with a tracheal expert, however all she does know is that it is a severe problem and an incurable one. There will also be severe damage to all the nerves that run in that part of the body and he will probably never be able to swallow.
Our decision was easy: to continue treatment. We will continue his chemotherapy with the current drugs he is on, until we get to a full year’s chemotherapy or 4 complete cycles and therefore Massimo is due to have his last dose on 7th June 2004. I’ve just checked and Massimo had his first dose of chemotherapy on 18th July 2003, so it will be just under one year. We are also going to introduce a daily oral drug which is normally used with prostate cancer and breast cancer and which is an oestrogen blocker as this has been seen to assist in at least one other case with a tumour of a similar nature to Massimo’s. After his last dose of chemo, Massimo will have the usual MRI scan and bronchoscopy and we will then see where we are and what to do next.
The reality that there are some doctors who would consider the kindest option for Massimo is to withdraw any kind of treatment and to let nature take its course is very hard to deal with. To be told that in all likelihood, the best outcome is that the tumour will leave massive damage, and that his floppy airway is going to pose significant further complications makes things even harder. We have always known, from snippets of what various doctors have said, that he would likely have some damage. To have it spelled out rather more graphically does not allow for any convenient optimistic delusions.
Posso immaginare come vi sentiate! Sono assolutamente d’accordo con voi sulla decisione presa e sulla vs. opinione sui medici…Che dire? Adesso siete voi che dovete farvi forza per il futuro che sarà molto difficile, perchè Massimo ha già dimostrato – e continua a farlo – che lui forte lo è, e lo fa anche per voi oltre che per se stesso….
Un forte abbraccio
Alessandra e Marco
It is all very well for doctors to make detached comments, even if based on a layer a knowledge – but they do not know Max, and they do not know you and Justin – I believe in all your strengths and know you have made the right – the only – decision….big hugs
Kx
Our hearts go out to you, but I agree with what others have said…the doctors who made those comments were offering ‘clinical’opinions and don’t know Massimo and haven’t studied his case or spent time with him. What’s on paper is very different from knowing the wee fella and what he’s capable of.
I have tried to call you a couple of times but you are engaged. Hope to catch you soon
Each day Massimo positively wallows in the warmth of your love. I notice the effect eveytime I see you with him. There are plenty of “healthy” children out there who do not smile like he does. I think regardless of whatever treatment he is undergoing, only you two can offer him a “quality of life” and that you do in abundance.
Lots and lots of love Tara
Silvia and Justin,
God could not have given such a precious angel as Massimo to better parents than you two. Love is the best medicine available and Massimo is showered with it every day. He’s a real fighter. My heart goes out to you having to make such decisions, but I’m convinced it’s the right one. Sending you all loads of love.
Lou
Silvia & Justin, I agree with everything the others have said. And should ANY of those specialitsts actually be privilaged enough to meet the adorabl Massimo, they also would see that there IS only one decision to make – the one you have both made, the right one.
I have never been lucky enough to see you with Massimo in person, but even from the photos, it is plain to see that he just thrives in your love. Silvia, the photo of you reading to Massimo on his birthday just shines with love & touched my heart. I just KNOW that that little boy LOVES being here with you & Justin.
As always, his future health is in my prayers,
Debx
Whatever the doctors say, it is easy for them to give you the various scenarios. But like Kate said, they don’t know Max or you and Justin. And we all know that Max is loved much much more than many children are. You and Justin will always do what you feel is right and best for your precious son. You only have to look at his smiling little face to see that despite everything he is a happy little boy.
Thinking of you all as always.
Much love Jules, Ian & Sophie x
Swwetheart, I can’t add much more to what has already been said. I’m sure you and Justin have made the right decision for you both and little Max. Like Debs, one of my favourite photo’s is the one of you reading to Massimo, the look on both of your faces speaks volumes, utter love and devotion.
Give precious little Massimo a big hug from me, I often wish I could do it in person.
much love to you and Justin
Fran xxx