I wanted to take a minute to update everyone on what we have learned this week as it relates to our dear Liam. During his routine follow up scans (every 90 days) an abnormality appeared on the CT scan. Further review and a look back at his April scans revealed that this small abnormality, that looked like nothing more than a shadow, was present then as well but had not grown in the interim. The fact that it was not seen on his April scans was not ideal but because it had not grown since then it is considered a good thing. It was enough of a concern though to his doctors that they ordered two additional types of scans to see if there was truly something present and if so to try and determine what it is. The scans all confirmed that there is some small growth present on his right kidney but they were inconclusive as to what it is.
The concern stems from the fact this is the same kidney that was entangled in his original tumor, and though only about 3% of kids relapse in the original tumor location, its existence is unexpected and unwelcome. All of the other markers monitored to look for signs of relapse like urine, LDH, and even the all telling MIBG scan were negative and show no signs of new disease. Yet the fact is all of these markers can show negative and new tumor growth can be present, so for this reason Liam’s team of doctor’s feel it is necessary to go in and see exactly what this 1-2 centimeter spot truly is. You might wonder why such an aggressive approach is being taken if no other signs point to a relapse. The reality is Liam’s type of cancer is very aggressive, as many of you know, and the doctors at MSKCC do not take anything for granted when fighting this beast. When the risks are measured it is far riskier to leave it unchecked and to give it any chance of spreading if it is indeed a new tumor. It is a decision that is more difficult for us to make than I hope any of you ever have to experience first hand and yet the decision in a sense is made for us…we have no real choice.
Our hope is that it is nothing more than scar tissue since this kidney took quite a beating from the tumor and the 11 hour surgery last year. The surgery is scheduled for this Friday and Liam will be in the best surgeon’s hands. We are fortunate in that Dr. LaQuaglia will be doing the procedure and is considered one of the best pediatric surgeons in the world. He is the same surgeon who operated on Liam for 11 hours straight to resect his tumor last summer. It is likely Liam will be in the hospital from 3-7 days depending on how everything goes. If Liam has anything to say about it I think it will be closer to 3. Your support and understanding during this very difficult time will be appreciated more than you will ever know. We expect this to be nothing more than a small bump in the road; anything else is just simply unacceptable for all of us. Please pray and and send good wishes to Liam as our dear prince endures yet another unfair challenge. A challenge he is far to young to endure alone and one that breaks our hearts to see him have to face just as he was making such amazing progress on so many fronts and so full of wonder and energy.
With hope,
Larry and Gretchen
