The Plan is Set

September 23, 2012

Well the doctor’s meet yesterday afternoon at “Conference” to discuss Julia’s relapse and determine the next steps. The discussion not only included the doctors from oncology, but also from surgery and radiology at CHOP.

It is important to remember that Julia’s case is not typical now – there is not a set protocol to follow. There are approximately 500 Wilm’s tumor cases a year in the US with a 95% cure rate. With that being said, there is a 1st relapse of about 25 cases per year. Of those, about half relapse again – only about 12 cases per year. There are not the numbers to gather data and a set a standard protocol of how to proceed.

Dr. Stern called on her way home and we discussed the plan of attack. The consensus at Conference was to remove both tumors. This will be followed about 10-14 days later with 2 weeks of whole lung radiation. There won’t be any chemotherapy this time around as we do know that Wilm’s tumors are killed off by radiation (this has been the case for Julia wherever she has had radiation) and in this way, we can reserve that option if it is ever needed in the future.

On Monday, Julia will be having an MRI of the brain just to ensure there is nothing there – it is the only part of her body that hasn’t been scanned. This will be done at the King of Prussia clinic, and then it is a ride to the Big Chop for a meeting with her surgeon, Dr. Mattei.

Julia’s surgery is scheduled for next Friday, unless there is a cancelation on Thursday. We will know more about details after meeting with Dr. Mettei on Monday.

We spoke with Julia tonight about what will be happening next week. She is scared and after some tears, the questions came. Julia is worried about another scar, more radiation tattoos and the pain. She wanted to know if she would be able to still “do things” – like going to Kentucky to visit John and Amanda in October and to the “big party” for ConKerr Cancer at The Please Touch Museum we were invited to attend. Julia is very sad that she will be missing out on some of our upcoming plans and there were a few more tears and questions – “Why can’t I just be a regular kid?”

But as always, Julia turned to the bright side – “No tubey this time and I won’t lose my hair!”, “You know Mom the radiation is not so bad, and I will get to see Dr. Tockner again – I love him. But do you know who my favorite doctor is that I love the most? Dr. Julie and I didn’t get to see her last week. I’m glad I will get to see her Monday before this starts again.” “We will just go to the party the next time – maybe it will make room for another kid to go? ”

Our little girl always amazes us – she always shows us how to live – with courage, love, grace and unbridled optimism.

We had some additional questions for Dr. Stern today and after speaking with her, there was a comfort in the decision we are all making. We know that Wilm’s tumors respond well to radiation – and by “well” I mean dies! We know we still have other options in our back pocket if we need them – but we won’t! Third time is a charm and Julia will be cured! So no more time for tears – it is time to once again face this monster called cancer head on and try to be live like Julia – with bravery, hope and a smile.

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Julia's Grace Foundation  |  PO Box 1081, Royersford, Pennsylvania 19468