Monday, August 3, 2015
I have been dragging my feet about writing this post. The reason being that I sometimes just don't want to be bothered with this cancer issue anymore. Life is good and cancer isn't, so I want to shut the door on that issue.
Silly and childish, isn't it?
But then I remember that this blog is more than a place for people to read about our life with Neuroblastoma. It has been a valuable resource for Matt and I over the years. It might be hard for some to believe, but it is quite possible to forget the details of very important events in your life. We can't tell you how many times we have had to do blog searches of our very own blog just to recall when Brady had his last scan or what the results were of a scan years ago.
So, understanding that this blog is a documentary of Brady's journey, here I am to tell the story of what happened this summer of 2015.
(Brady, it hit me the other day that in a few years you will be reading this blog for yourself. Your freckled face will stare at a computer screen somewhere and you will scroll through my words and start to understand what impact this cancer thing had on your early years. You will sit quietly and start to understand exactly why you have those scars covering your back and side. You will connect the dots as to why we cry sometimes when we see you run, why you need to lay motionless inside of an MRI machine each year, and hopefully be amazed at the mighty work God has done in your life. I hope sweet boy that as you read, that our love for you will be evident in every word. You may wonder why we did certain things, why we didn't do others, but I pray that more than anything you will know that we always, always sought to do what was best for you. Please know that dad and I trusted God and his plan for your life. It wasn't always easy, but we did that because we loved you but knew He loves you more.)
Brady's yearly scan was July 10th. As you might remember, last year we went to Memorial Sloan Kettering in NYC for Brady's 5 year, post-treatment scan. We went with the hope that maybe, since Brady had hit the important 5-year milestone, that they would tell us he could be done with follow up scans and appointments. Unfortunately, despite his stable scan, we were told that we needed to continue to monitor the tumor fragment that remains in his spine. Our next scan was scheduled for this summer and we made the decision to scan locally at Strong.
Once again Brady attempted to do the MRI of his thoracic spine without anesthesia. He would need an IV so that contrast would be administered. He handled the IV really well this year (there was no throwing up or passing out:) The MRI department had a goggle and headphone system that allowed Brady to watch a movie. He had some hard moments during the scan, but he did it. In total we were in the MRI room for over two hours.
We had planned on going to the drive in that night (it was Friday) with friends and family. I figured there was no better place to wait for the doctor's call and then to celebrate good news.
But the call never came.
I smiled. I laughed. I ate too much popcorn and we even stayed until 1am and watched both movies. But our usual call from our fantastic and dependable oncologist never came. A small nervous pit began in my stomach. I knew the same was going on inside of Matt, but we just didn't talk about it.
We slept in Saturday morning since we hadn't gone to bed until 2am. When I checked my phone in the morning I had missed a call from Dr. Korones. He left a message saying that he was sorry he didn't reach us, but that he would call back. That was it.
Before moving on I should say that Dr. Korones always, always starts his conversations with us by sort of blurting out that important information first so that you don't have to wait for it as you listen to conversational pleasantries. He usually starts off by saying something like, "Hi Mrs. Williams everything looks great!" He didn't do that on the message. The pit in my stomach grew.
I immediately emailed him (he has allowed us access to his personal email account at the hospital) and apologized for missing his call. I told him that we would be waiting by the phone. A short time later the phone rang.
Hi Mrs. Williams. It's Dr. Korones...
and then a pause that I have never heard before.
I am just so sorry to tell you this, but the scan shows that the tumor has changed. It has grown.
I didn't want to believe it myself, but I can see what they are saying. It has grown.
The concern in his voice was alarming. He went on to tell me that it was a small growth, millimeters in fact. But the fact that it has grown means that it is not dead.
He told me that he had never seen something like this and he never would have expected it. He said that the next step would be to seek the opinion of Dr. Laquaglia and the team at MSKCC. (Dr. Laquaglia is the surgeon who performed Brady's second surgery. He is often regarded as the top NB surgeon in the country.)
For most of the conversation I held my hand over my mouth to prevent all-the-bad-words-in-the-world from coming out. When we ended our phone conversation I just stared at Matt who had been listening the whole time, and I wondered if my eyes looked as worried as his did.
We knew this wasn't a life and death situation and Dr. Korones reminded us of that too. We knew that if need be, Dr. L had promised us that he and his team could get this fragment out if it ever caused Brady a problem. But it's just the whirlwind of a moment like this, moments when your kids are running around playing Nerf guns one minute and the next moment you are told your son's tumor is growing in his spine, that take your breath away.
We knew what seeking out the opinion of the team at MSKCC meant. It would mean waiting. When something similar happened in 2012, we waited a few weeks for the team to review Brady's case. They have an expert panel that meets weekly called the Tumor Board. Brady's scans needed to be sent to NYC via snail mail and then he needed to get put on the tumor board schedule.
I was a total mess for the first few hours after the doctor's call. I can best describe it as sort of angry grief. I just did not want to be dealing with this again. I did not want to Brady to have to go through another surgery. I did not want to have to tell Brady what was happening inside his body. I didn't want to watch him come to terms with the fact that there was cancer in his body. I didn't want to go to NYC. I didn't want to do any of it.
For the next few days I battled with an old familiar enemy. Fear. I am pretty sure it is impossible to not be afraid when you have a child with cancer. When your child's treatment ends, it would seem natural to think that the fear goes away. It never goes away, but I can tell you that after 6 years I had arrived at a place where I was quite certain that our battle with Neuroblastoma was over. Sure, Brady has late effects from his treatment. But we understand what those are, we understand the risks for later in life, and we felt confident that Brady was at low risk for those complications.
Then one phone call can rip away your hard-earned peace like a gust of wind. After 6 years of scans and good reports I had arrived a few years ago at a good place. My focus was on helping Brady understand what it means to be a survivor and to manage the side effects of his treatment as they came up. Now we were instantly thrust back into warrior mode. I hated it.
Despite how my emotions were failing me, my heart was steadfast on God's promises.
It was no coincidence that at the time all of this was going on I was participating in a Bible study (Seamless by Angie Smith, can't say enough good things about it) with some other women in my home each week. At this particular time we were studying about some of the founding fathers of the Christian faith, like Moses. We read in Exodus 2 that Moses' mother had to do the unthinkable. She gave birth to a son during the time when the Israelites were in bondage to Egypt and Pharaoh had ordered that all sons born to Hebrew women would be killed. Moses' mother knew that she had to trust someone bigger than herself to protect her son. She had to let go of the control that we as mothers like to have over the destiny of our children. In her case this meant putting her infant son into a basket-like raft and setting him afloat in the river. Think of the risk involved with this plan. What we talked about in our study was that we as believers fight the urge to be basket-grabbers. Our tendency is to jump in that water, grab ahold of that basket, and steer and direct it in the way we think it should go. We could learn a lot from Moses' mom. God calls us to be like her. To trust, to do our part, but to let go of the basket and allow God to guide us amidst the current of the river.
This example of Moses' mother was a huge encouragement to me throughout this period of waiting. I have trusted God all along and I would continue to. This doesn't mean that I wouldn't be afraid. God knows that I will be afraid and that doesn't surprise him or intimidate him one bit. Thank goodness my anchor holds in the One who is secure above all else. I am so weak and so prone to fear...it is only in Him that I am strong.
We would wait 10 days. In that 10 days we wondered if we would be planning a trip to NYC in the near future to consult with the doctors. We wondered if Brady would be starting 3rd grade on Sept 8th or if he would be recovering from a surgery. During this time we also emailed back and forth with our local oncologist a few times. We all came to the conclusion that if possible, we wanted this tumor out of Brady once and for all. Dr. Korones assured us that we were doing the right thing by seeking out the opinion of the best person to address this tenuous situation by consulting Dr. L. I have said this before, but it is worth saying again, it is so reassuring to know that Brady's oncologist is such a highly respected and accomplished oncologist. But it is even more reassuring to know that he is humble enough to refer us to someone who knows more than he does about Brady's type of cancer. We respect and trust him so much because of that.
I checked in with Dr. L's office every few days. I just love to annoy doctors while I am waiting. But if you are a long time reader of this blog you know that there have been countless times when my "sweet" persistence has come in handy. My advice for the day is "Always stay on top of doctor's offices."
During one of my phone calls I was able to figure out that Brady had been discussed at the July 21st tumor board meeting. Later on, I ended up speaking with a Nurse Practitioner who had been at the meeting. Minutes later Matt received a call from Dr. Laquaglia himself. Both of them told us similar news, news that shocked us both.
The tumor board reviewed Brady's scans and compared his 2015 scan to his 2014 scan and to the 2013 scan. In their opinion there had not been any significant change. In other words, they disagreed with the radiologist who had read the scan at Strong just 11 days prior.
Dr. Laquaglia was confident that he and his team could remove this tumor if they needed to. We were surprised to hear that it would not be an easy surgery. It would involved another thoracotomy (Brady had a right thoracotomy in 2009.) They would then possible have to do another laminectomy in order to access it (Brady had a 5 level laminectomy in 2009 T2-T7.)
But the tumor board felt that the best course of action was to do nothing. Dr. L said that he was also confident that Brady, like several other patients they are following with similar tumors, would live the rest of his life with this thing and be okay. His recommendation was to rescan Brady in 6 months, rather than wait a year.
Wow. Matt and I were both relieved at this news. For me though, I had a whole mixed bag of emotions going on. I was so very happy that the best experts in the world had reviewed my son's case and said that surgery was not needed at this time. But then there was this part of me that was in some way disappointed to know that it would have to continue to be a part of our lives. I really wanted it gone. But when we heard how aggressive the surgery would have to be to get it out, we both were relieved that Brady wouldn't have to go through that again.
Of course since the phone call we have done our best to sort through the reality that one hospital said it has grown and one says it hasn't. You may be like me and asking yourself, how is this even possible???
Brady's follow up appointment with Dr. Korones took place last week and my conversation with him shed some light on things. He pulled up Brady's most recent scan and then had a side by side image from 2014. We both agreed with the radiologist at Strong. When comparing the roundest part of the tumor, it most certainly appears to have gotten bigger. Dr. Korones said so too. But he also said that as advanced as MRI technology is, it isn't able to give you a consistently precise picture of the same exact spot. There are many variables that come into play when comparing one scan to the next. It is not an exact science. He said that a surgeon, like Dr. L, is able to look at a series of scans and sort of create a 3D image in his mind based on the scan data and based on his vast experience in the operating room. This made a lot of sense to me. He then told me that as difficult as this situation is, he wanted me to know that he wholeheartedly trusts the team at MSKCC's opinion of Brady's case over anyone at Strong. Again, a remarkably humble man. I think no less of him as a doctor and will continue to trust him implicitly with my son's care. He is the best not because he knows it all, but because he knows what he does not know.
To say this was a roller coaster of an experience is an understatement. One of the challenges of this experience as compared to the days of Brady's treatment, is that Brady is now 8 years old. While we used to be able to discuss anything and everything in front of our "baby" we now had to carefully guard our words and emotions in front of our kids. We made the decision to say nothing to Brady until we knew what the plan was. This was complicated by the fact that I had asked for prayer for him before his scan. Like our prayer warriors always do, many were checking in to see what the results were. I made the decision to post something on FB under another post I had written as to not draw too much attention to it. I wanted to give an update regarding what was happening, but did not want people saying anything to Brady or to us in front of him.
As we move forward, I ask that you help maintain this privacy for us in regard to Brady. We are not telling him about this bump in the road. It's not that we are keeping the truth from him, but rather we are allowing our child to enjoy life without unnecessarily carrying a burden that is hard to understand when you are 8. He is aware there is a fragment in his spine, he understands why he needs to have scans, but to include him in on these unsure moments is just not necessary at this time. Now that we know that nothing will be done, we are glad we made this choice.
Our plan is to scan Brady again in January at Strong. Dr. Korones said the scans will immediately be sent to NYC for review. We both laughed that maybe we won't even read the local report before we heard from the tumor board at MSCKK.
I know I have said this many times before, but this experience makes it worth repeating. When you are facing a health crisis, major or minor, seek out a 2nd opinion. Before you have surgery, seek out a 2nd opinion. When your child has a rare illness, get on the internet, find out who the best doctor in the country is for treating that illness, and call them! I could give you 10 examples of times our family has encountered an incorrect diagnosis. The consequences can be life threatening. You never regret being too careful when it comes to your health.
Thank you for standing by us in prayer and support. We are in the process of planning our 7th Annual Alex's Lemonade Stand which will take place Sept 5-7. Our trial this summer has made us more resolved than ever to help cure childhood cancer. It is an honor to do so on behalf of those battling pediatric cancer, those families who have lost their precious child, and for children like Brady who have survived but are dealing with the late effects of their treatment.
2 Cor 5:7
Lovingly written by Megan at Monday, August 03, 2015