We are coming up on four years (January) since Brady's diagnosis and well over 3 years since his treatment ended. He, as well as his brother and sisters have been flourishing.
We have continued on our follow up schedule of MRI every 6 months here at our home hospital. The end has been been in sight recently as our oncologist has told us that we have 5 years of this schedule to complete, and with Brady's latest scan this month we had 2 years left!
I'm so sorry to say that the plan has changed.
The real reason I'm updating the blog is to let those who love our family, those who have prayed with us, and even though who just follow our story to learn more about this disease know that there has been a bump in the road, for lack of a better term.
Brady had his MRI under anesthesia on October 2nd of this month. As I always do, I emailed our oncologist and asked him to call us right away to let us know the preliminary results. He called late that evening and let us know that preliminarily, everything "looked good." We breathed the familiar sigh of relief and celebrated another scan down!
One week later, on October 9th, the oncologist called late in day to tell us that the final radiology report did not, in fact, come back "good." You may remember that after Brady's final surgery, there was a small piece of "something" that the surgeons were not able to remove from the area next to his spine. Due to the extremely delicate nature of his surgery at Sloan, to access this small piece would have required turning Brady which would be too risky. The surgeons and the oncologist thought that leaving this piece, given Brady's type of tumor and how these tumors usually respond after surgery, would not likely cause a threat to him.
The doctors have never been able to give Brady a diagnosis of "cured," "no cancer," or "No Evidence of Disease" as it called in the Neuroblastoma world. He has been labeled as Stable Disease for the past 3 years given that there is no way to tell if the "spot" is cancer or scar tissue.
So back to the phone call on October 9th. Our doctor told my husband that this scan, when compared to those done back in 2009 after his 2nd surgery, show that that the spot has grown. He estimated that it had grown by .5-.8 centimeters. Clearly this change is not big compared to the original tumor. However, a change at all means that the assumption we had been trusting in for 3 years, that this thing was a "dead tumor" or scar tissue, was not true.
Our doctor here is not a specialist in Neuorblastoma. He is a brilliant and wonderful doctor and person, and he is also humble. He absolutely knew that he wanted to consult immediately with the doctors at Sloan in NYC. He told us that he would send Brady's scans down to Dr. Laquaglia, the surgeon that performed Brady's final surgery in April of 2009.
So we began a period of agonizing waiting. We waited 6 days with no word. I called Sloan myself the following Monday and found out that Brady's scans were received and that soon we would hear something from them. Our oncologist called next and told us that Dr. Laquaglia had asked that Brady's case be reviewed by the tumor board there on October 23rd. We would have another week of waiting. The tumor board is made up of surgeons, oncologist, and practitioners on the Neuroblastoma team at Sloan. It is a meeting of minds of the people that have the most experience with NB. They make decisions and recommendations based on best practices for children with NB.
October 23rd came and went. We knew that the tumor board met let in the day and prepared to hear from them the next day. But we didn't. I emailed our oncologist Wednesday night and he answered back that he hadn't heard anything, but would try to find out some answers. By Thursday morning I couldn't stand the waiting anymore. The scan had taken place over 3 weeks ago and we still didn't know what we were dealing with. I called Dr. Laqualgia's office in the morning. His secretary told me that the tumor board DID NOT discuss Brady's case because of some insurance glitch. Apparently, they now have to charge families for tumor board review and they were trying to access our insurance to do so. I was infuriated that we were not made aware of this. We would have immediately agreed to pay out of pocket had we have known. The secretary asked to put me on hold. So I held. Five minutes on hold...ten minutes...twelve minutes. I was just about to hang up as I thought I might have been hung up on. All of a sudden I hear, "Mrs. Williams? It is Dr. Laquaglia."
I sat down in my kitchen and for the next 10 minutes I spoke with the best Neuroblastoma surgeon in the world. Here is a summary of what he said:
-The “tumor” (we are once again referring to it as a tumor) has grown when you compare its size now to the size it was right
after surgery in 2009.
-The growth is small, but it is definitely
measurable.
-It is not something that just happened in recent
months, but more likely has taken place slowly over time.
-The tumor is in one of the holes that goes from
the spinal cord to the outside of the spinal column.
-Sometimes tumors like Brady’s do come back a
bit. We can be encouraged that if it were a super aggressive cancerous tumor, it
would be bigger and growing faster. This is “good news.”
-He theorized that it might be turning from
Neuroblastoma to Ganglioneuroma. Ganglioneuroma is a benign tumor and sometimes Neuroblastomas mature into Ganglioneuromas. There is no way to know for sure which it is.
-The concern is less about the tumor itself and
more about where it is and possible neurological damage.
-His recommendation was to "wait and see." He would like to rescan Brady in 3 months.
-If there is more growth, we will reevaluate. .Surgery will be the recommended course of treatment if one is needed. Dr. L is confident they could get this thing out. He indicated that Sloan will always advocate surgery only if necessary.
Our oncologist and I discussed the recommendations over email later that day. He fully agrees with Dr. L's assessment and also let me know that Dr. L did review the case with an oncologist on the NB at Sloan.
Matt and I have many questions that we are left with. Not the least of these is when did this "tumor" start growing, or did it ever stop? Perhaps it has been growing ever since surgery, but just so slowly that it was undetectable? Why didn't the radiologists here pick up on the change until now? How long will we now have to monitor this tumor? What sort of neurological damage could happen if it grows?
The next step is to meet with our oncologist here for follow up on November 8th. In the meantime we have to decide if we will continue Brady's follow up care here or if we will go to Sloan. We always said that we were comfortable staying locally if nothing unusual came up on his scans. Well, the unusual has happened and now we must decide. It sort of seems like we would be cutting out the middle man by going there, but we also respect and trust our doctor here so much. Unfortunately in the world of pediatric cancer, your local oncologist's experience just can't compare with that of the NB team at Sloan. We need to figure out insurance issues, traveling arrangements, and of course just handling life here at home if while we would be gone.
There you have it. A really big, sort of not so great update. We waited several weeks to make tell those outside of our closest friends and family because we just haven't known what we are dealing with. Our biggest concern is the well-being of Brady, Eli, Cara, and Allie. They know nothing of what is going on with this, and for now, that is okay. We will have to tell Brady when it comes time and figure out how to explain what is happening in a way that is not traumatic or causes him to worry. We ask that you use discretion when speaking to us in front of our kids regarding this issue. Their sweet innocence is such a precious gift.
I think I have asked for more than my fair share of prayer in my 33 years. If you wouldn't mind, we could use your prayers once again. I could write an entire post just about the spiritual journey I have been on this past month, and perhaps I will sometime. For now, just know that we place our trust in the God of things seen and unseen. He knows our joys and sorrows, and we know that he listens to those who call on His name. Thank you for doing so on our behalf.
With love,
Megan
