Steps for Brady 2023

It's been years since I have updated here.

It's been so long that blogs aren't really too big of a thing anymore. Brady is 16  and his cancer diagnosis was over 14 years ago.

Back when I first hit publish on my very first blog post, I decided to call this blog Steps for Brady. At the time Brady had been diagnosed with cerebral palsy. He had progressively lost motor function and a developmental pediatrician told us that he would never walk unassisted. Our dream was that he would, so Steps for Brady became our mission and this site's title.

Fast forward a few weeks when we learned that the first diagnosis was ever-so-wrong. Brady was diagnosed with Stage III Neuroblstoma and the tumor was throughout his right chest wall, extending into and almost fully encapsulating his spinal cord. No one knew the extent of the spinal cord damage, or what kind of a motor recovery he would have if he survived. While our enemy changed from cerebral palsy to cancer, our mission stayed the same...Steps for Brady.

Brady would endure cancer treatment and two highly invasive surgeries in just 4 months. In the end he would be declared as haivng "stable disease" and we would begin the long journey or survivorship. Just weeks after his second surgery, Steps for Brady became a reality. Brady took his first steps. Miraculous in every way.

Years have passed. Brady surpassed all expectations in his recovery. His baby Steps turned into the running strides of a t-ball player. He became an All-Star baseball player in his elementary years and basketball became his favorite sport. No one could have ever guessed that the quiet, but strong competitor had ever been told twice that he may never walk. All the while we monitored a tumor fragment in his spine through MRIs.

As Brady grew into a teenager, a new battle emerged. His spine began to show evidence that it was curving as he grew. We had known that this was a very strong possibility since January 21, 2009. On the day he was diagnosed he endured an emergency spinal laminectomy at 6 levels of his spine. The lamina at those levels was removed in order to allow the surgeon access to the spinal cord to debulk the tumor. What was needed to save his life created a spinal cord that would be like a tree without bark, allowing it to bend as Brady hit puberty and grew.

And bend it did. We followed the curve for several years. We visited doctors who told us a fusion would be inevitable. We researched less invasive options, after all our mission has always been Steps for Brady and spinal fusion carries significant risk. Our research took us to

Boston where we committed several years to  specialized bracing and an exercise protocol for Brady. He wore a customized hard brace for 20+ hours a day. He endured the process of getting fit for a brace 3 times over those years, all the while continuing to play baseball and basketball and living a full life. The brace worked really well...until all of a sudden it didn't. 

Last May a scan revealed that the curve was progressing quickly and severely. The only option left was surgery. We spent the summer researching and having virtual appointments with the best surgeons who offer surgical alternatives to traditional fusion. All of them said Brady was not a candidate. His curve is too high, too severe and his case too complex. We had an appointment with one of the best local surgeons in our area. This was  devastating experience and his opinion was that Brady needed something much more radical than a traditional fusion. His told us that there was a 30% chance that Brady would be paralyzed after this surgery to correct "the deformity." He said this as he gestured toward my son.

But...Steps for Brady. I had not for one minute forgotten about our journey. I had not for one second forgotten that God had seen us through the dark days of cancer and had given us 13+ years of blessing. We have been able to sit on the sidelines and cheer on those steps, those slides, those pitches, those hits. Those have all been good and perfect gifts given to us and meant to glorify God who had seen fit to use Brady's story to inspire hope.

We remembered that years ago we had seen a surgeon in the years immediately after cancer. He was wonderful but had long since moved out of the area. We reached out to him for a virtual appointment. He had left Strong for Shriners, and then went to UNC at Chapel Hill. We had a phone appointment with him and then this spring made a quick 24 trip down to see him. He first and foremost acknowledged Brady and asked HIM if his curve bothered him. Brady said no and reported that he does not experience any pain. He explained that because the curve does not cosmetically bother Brady, the goal of the surgery will be to get some correction, but mostly to stop the progression of the curve. Without this surgery, the spine will keep curving and cause damage to motor function, organs, etc. 

The date was set for June 27th. We are currently on the road to North Carolina. Surgery begins tomorrow at 7:30. Brady will have a spinal fusion T1-T11. The risks are many, but we are in good hands. We have shared those specific risks with a circle of friends and family who are praying over them. As parents we are feeling such agony knowing that Brady will endure suffering as this is not an easy surgery. At times we question our past choices, wonder if we did the right things at the right time. We trust God for a favorable outcome for Brady, but also know that sometimes prayers are not answered on our terms.

We humbly ask that you join us in prayer. We are asking that God will keep making a way for Steps for Brady. It has been so good to write down and share these reflections of Brady's life as we prepare for the next battle. God has been so good to us. We pray Brady's story will continue to glorify Him.

With hope,

Meg

Our Summer Hiccup

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.

With hope,
Megan
2 Cor 5:7

3 Reasons Why We Sell Lemonade

There's been a lot of attention this week.

Lemonade Days, benefiting Alex's Lemonade Stand Foundation, is this weekend. When we accepted the honor of being the New York State Hero Representative Family we agreed to have an event this weekend. Our lemonade stand event is tomorrow (Saturday June 13th) and we are excited!

In order to raise the most money possible, I have been a social media crazy person...posting, commenting, tweeting, repeat. Social media raises awareness and brings attention to the cause. We had a benefit at a local jewelry store yesterday. We had an incredible turnout with 10% of the proceeds benefiting ALSF. 133 bracelets were sold and we received a check for $455 from the jewelry store. Amazing.

There was a radio interview, a story in our local paper, and tomorrow a story will run in the Buffalo News. Wow! We have been able to discuss the purpose of Alex's Lemonade Stand Foundation with many people through these opportunities. Incredible!

As much as I love people and love events, it feels uncomfortable to receive attention. I wish I could just stick an ALSF banner over my head and withhold my name from articles. But people gloss past the names of charities, but they remember stories.

I realized that with the stories running in the newspaper I had an opportunity to share my heart, in my own words, unfiltered on my very own blog with anyone who may happen to click on the link after reading our story in the papers. This is a blog that I updated regularly for several years after Brady's diagnosis. With time, the old saying rang true, "No news, is good news," and the frequency of my writing decreased.

But on the eve of our Lemonade Days event, I find myself sitting here thinking about why we keep doing this. Our impact is small in dollars, but in my heart and mind money is not the greatest currency. There is a lot more to our story.

3 Reasons Why We Sell Lemonade

#1: Our son is well and we are grateful.
You can read about Brady's journey with cancer but clicking on the links to the right. At one point in our lives, we had a son that was very, very sick. There were prayers said on his behalf, God intervened, and he was made well. That is the short story, but in the details of the story you will find a mom and a dad who look at life a whole lot differently than they did before. You will see two people who used to think that saving as much money as possible was the best philosophy in life and who now treasure the opportunity to give more (and also spend more than they used to on just plain fun!).

Every good and perfect gift is from above, coming down from the Father of lights with whom there is no variation or shadows due to change.

James 1:17

 

Brady's healing was a good and perfect gift. We will never stop thanking the Lord for it. One one of the ways we chose to do that is by supporting Alex's Lemonade Stand Foundation to help other families experience healing for their child with cancer.

 

#2 We cannot forget the other children.

When you become a cancer parents, you are instantly thrust into a world of horror. That sounds dramatic and morbid. The suffering of children with cancer is one of the most horrific things you could imagine. Brady's treatment and suffering was very difficult, but what he endured was a pin prick compared to what thousands of children are dealing with at this very moment. I will never forget the faces I saw at the hospital, the screams, the looks of utter despair on parents' faces. Among the most devastating of memories I have is seeing the teenagers who were sick. Kids who knew what was happening in their bodies, who should have been playing basketball or going to prom, but were instead realizing that the end of their life was near.

 

I recently prayed for a boy named Jonah. His parents had to make an agonizing decision when he entered hospice care. They had to decide to do palliative radiation to his lung tumors so that it would be the brain tumors that took his life as doctor's said it would be a more peaceful way to pass. Can you even imagine.

 

My heart broke as I read about a sweet boy named Wes with Neuroblastoma. His parents posted asking for prayers as he had just relapsed. For the fourth time.

 

When your child stops treatment, you can also chose to stop participating in the world of pediatric cancer families. You can unsubscribe to the blogs, leave FB groups, stop checking in on Caringbridge. But every time I consider doing that because I just cannot handle the heartache, I consider this...

 

What if that were Brady? What if his story were too sad and people stopped reading and praying and caring. What if?

 

I feel as though we were changed by this experience. Once you look into this world, you cannot look away. The heartbreak you experienced becomes a deep sympathy for other parents going through the same thing. You have to be there for them, because someone was there for you. God is pretty clear on the topic of joining people in their suffering.

 

Rejoice with those who rejoice, weep with those who weep.

Romans 12:15

 

 

Bear one another's burdens, and so fulfill the law of Christ.
Galations 6:2

 

We support ALSF and families of children with cancer because we want to help bear the burden. We knew the burden of having a sick child and people wept when we wept and rejoiced when we rejoiced. We will do the same.

 Jen Hatmaker said it beautifully when she wrote, "Suffering invites us to be radically human with one another."

 

#3 There is hope!

As a Christian, I wrestle with the reality that children not only die of cancer, but for many, their suffering is unspeakable. This issue has never caused me to doubt my faith, but it has sent me searching for a clear answer to the question, "If God is good, then why do children have to get cancer?"

 

I have studied my Bible, I have scoured the internet, and even recently I asked my pastor to give me his insight on the topic.

 

In my search for answers, God has given me HOPE and REASSURANCE.

 

I read something that described it this way (I am searching for this reference to link to it), "The reality is that even with Jesus' cross and resurrection, losing a child seems to make very little sense. But without Jesus' cross and resurrection, it makes no sense."

 

Read that again and let it sink in.

 

In plain language, that means...children suffer and die and it is awful. But to think of that reality without the hope of Jesus and the promise of heaven because of his death, burial, and resurrection would drive someone to despair!

 

As a believer I believe that God is good, but not in a way that I understand goodness. My understanding is limited and cannot compare to that of the creator. It's like my understanding can only see one thread of a giant, masterfully woven tapestry. The thread that I see, children suffering, is ugly and awful. God sees the whole tapestry. He created it. He weaves that horrible, ugly thread into a beautiful and perfect plan.

 

The sufferings of this present time are not worth comparing to the glory that is to be revealed to us.

Romans 8:18

 

Now that sure does make me frustrated. But God understands this frustration. After all, He created me! My pastor reminded me that the one who wrote the psalms cried out to God in anger and frustration over and over again. And hey, God let that be in the Bible. Our confusion and even our anger doesn't intimidate God.

 

So I must forge ahead, accepting God's goodness and my limited understanding of the big picture.

 

Instead of asking WHY does this happen, I will ask God to show me HOW can I help?

 

Our hope is in the Lord. We can share our hope by giving back, not forgetting about those who are suffering, and by being bold with our faith.

 

And we can do all that by selling lemonade. One cup at a time.

 





MSKCC 2014

We arrived home safely last Thursday night from our trip. It was great to be home and be with the kids again! I have been working on this post since being home. I want to give fair warning that this will be a very long post. I want to chronicle not only the medical information we learned from our trip, but also document the memories...both good and bad!

Two specific times during the trip I looked back at blog posts to recall aspects of Brady's treatment. It might be hard to believe, but we both completely blank out on important things like when and how often Brady has had scans in the past few years! So I need to continue to document these things not only to possibly help another family, but to keep an accurate timeline for us to refer to in years ahead.

Our trip began Monday afternoon with a drive to Elmira-Corning Regional Airport. There is a wonderful charity called Corporate Angel Network that connects cancer patients with corporations willing to donate their empty seats on their corporate flights. Corning is one of the companies who participates with this great charity. The seats, upon availability, are open to cancer patients (child or adult) traveling for cancer treatment, consultation, or follow up. The Corning jet flies to New Jersey twice a day. We caught the 4pm flight down and we were the only ones on the jet. The pilot gave Brady an adorable aviator bear.

 

 

We hired a car to take us from Morristown, NJ to the city. It was a long, slow ride, but we made it! As we drove in we were able to see the Freedom Tower despite the fact that the top of it was obscured by clouds that evening.

During our 2009 trips to NYC and also for this trip, we stayed at the Ronald McDonald House. The Ronald McDonald House NYC provides extremely low-cost accommodations to families whose children are being treated at local hospitals. I wasn't sure if Brady's follow up appointments would make us eligible to stay there, but the social worker at the hospital insisted that we were welcome. I had many mixed emotions returning to the house. It is definitely a place where a spirit of hope is evident, but it is also a place filled with moms, dads, siblings, and children who are carrying the heaviest burdens imaginable. Throughout our 4 days there I had countless flashbacks to the lonely nights I spent there while Matt stayed with Brady overnight at the hospital and memories of many amazing kids we met there in 2009. I am very proud at how respectful Brady was of the other children he saw. There were some alarming sights for a 7 year old boy to see. Many of the children are bald from chemo, some are disfigured, and some have certain devices coming from their bodies that are downright frightening. I could see the worry in his eyes, I caught him staring a few times, but he saved his questions for times when we were alone. I reminded him many times this week that those precious children are created in the image of God, just like him. I reminded him that we could pray for them and that he was once a sick child like them. Keep praying for his sweet heart as he digests all of that information.

I was just sharing with a friend today about the difficult things you see when you are in that setting. I told her that I hesitate to talk about such details because it is upsetting, graphic, and can really get people down. She encouraged me that it is a message that people need to hear. The image we often see of pediatric cancer is cute, bald kids with a smile on their face. But baldness does not come close to capturing the experience of being a child with cancer. We saw a boy who literally have 4 metal rods sticking out of his head 6 inches each. It was horrific. That same boy had eyes that were hanging from their sockets. And do you know what he was doing? He and his mom were sitting together enjoying a piece of pizza for dinner. Next to us in the dining room was a little child in a rage as her parents tried to eat. This little one was screaming and kicking and yelling nonstop. Her parents sat and ate their pizza almost without flinching. Brady was uncomfortable and I could tell he was wondering why this child wasn't being disciplined. Later I was able to tell him that this little girl was most likely reacting to the steroids she had to take, or was dealing with the painful bone and muscle aches as a result of her treatment, or perhaps she was just plain exhausted. I apologize for sharing these realities with you, but my mind has not wandered far from that dining room since we left.

After checking in, we started walking to find dinner. We settled on Bareburger which was only a block away. Matt and Brady gave it two thumbs down, I gave it one up and one down. The funniest part of our dinner was Brady's burger. It was this teeny tiny 2oz burger. It was totally ridiculous, but hey, it was organic!

 

After dinner we walked back to our room and prepared for our big day at the hospital on Tuesday. (As a reminder to myself: If you ever stay at the RMDH again, bring twin sheets, not queen. Bring your own pillow and more towels. And a white noise machine)

 

One of our reasons for going to MSKCC for Brady's scans this time is to attempt to do so without anesthesia. Brady has been MRIs under anesthesia over 15 times and it seems like it only goes well one out of every two times. He is often under anesthesia for 2 to 3 hours and we rarely have the same anesthesiologist. He has actually had some disturbing complications including a partially collapsed lung and high fever reactions to certain drugs. At MSKCC they allow children to attempt their MRIs without anesthesia and with the aid of video goggles and headphones. We were confident Brady was up to this challenge now that he was 7.

 

We arrived at the hospital and went to the 11th floor, as directed,  and were then sent to the 2nd floor who sent us to the 9th floor. Oh Sloan, how I forgot the mass chaos that sometimes is part of the crazy process! We finally ended up just going to the pediatric floor to get checked in and see exactly where we should be for the scan. It was at this point when I realized a few important communication breakdowns had  taken place. The secretary told us our first stop would be the IV room. Upon entering the nurse told Brady it was time for his IV and blood draw. Whooa. Hold on.

 

As soon as she said IV, I instantly felt stupid. I had promised Brady there would be no need for one. Actually, several people I spoke to on the phone for weeks prior confirmed that as well. But as the nurse explained, the IV was necessary to administer contrast during the scan. I know that, I just had totally forgotten. Brady has never had an IV while he was awake! That seems strange for a cancer survivor, but when he was in treatment he had a Broviac catheter. For his surgeries and scans they would access him that way to put him to sleep and use a secondary line if necessary. Since then, they have used gas to put him to sleep and then put the IV in.

 

He handled the process extremely well. He refused to look away and just stoically watched the whole thing. All went well until about 20 seconds after it was in. That's when his head hit the table and then he threw up, twice. Poor kid! He got some relief from a cold pack on his neck. After the IV we briefly met with a Nurse Practitioner who cleared Brady for anesthesia, if he needed it.

He passed some time on the iPad.

 

 

We headed down for the MRI and had quite a long wait. I decided that I would go with Brady for his scan. They allow one parent to sit in the room, next to the machine. Matt has always taken Brady for his scans when he gets anesthesia. I did one time and decided that watching him be forcefully put to sleep with the gas mask was enough for me. But I felt like I could do a great job at sitting next to the MRI machine and praying for an hour!

 

Brady and I made our way into the room. He was shivering like crazy as he was stripped down to his undies and a hospital gown. Like I mentioned before, at MSKCC kids who are trying without anesthesia can watch a movie on goggles and with headphones during their scan. Brady had brought Star Wars Episode 1 with him as he thought it was serious enough of a movie that he wouldn't laugh and move during the test. The biggest challenge for kids getting MRIs awake is that they have to lay still and also that the machine is very loud. If you have ever had an MRI before you know that the machine makes really loud beeps, clangs, and pounding sounds. I knew that Brady had the maturity to lay still and that the noises wouldn't be scary to him.

 

So Brady laid on the table with a surgical hat, goggles, headphones, a head support, and a heated blanket. I told him I loved him and that he could do it, and they pushed him in!

 

About 25 minutes into the scheduled hour scan, the tech came into the room. I didn't notice at first as they had given me earplugs (the noises are unbearably loud outside of the machine!). He gestured to me that things weren't going well. He sort of shouted into the tube to Brady that he needed to lay still. He left the room and about 5 minutes later was back. He repeated that same message to Brady and said to me that he kept moving. Another 30 minutes or so went by and he came back in. He pulled the table out of the machine and that is when I saw poor Brady. His face was bright red, almost purple. I could see a few tears coming out from the goggles. He looked sort of puffy and upset. He wasn't allowed to move at this point because he had to maintain the same position in order to finish. I asked him what was wrong and he said, "I'm hot. I want to be done." My heart just broke. I did not even consider that everything he had wrapped around his head would cause him to overheat. Due to his Horner's Syndrome he cannot sweat out of the left side of his face and upper body. He overheats very quickly and intensely. All that heat was trapped in his head with no where to go. The tech told Brady that he needed 10 more minutes and asked if he could do it. He said yes in a broken, quivering voice that made me want to pull him right off that table.

 

He pushed him back in and I just kept praying that Brady would be able to do it! I prayed for peace and comfort for him. I was so sad to think that we came all this way and were so close and he would have to know that he didn't do it! Finally the tech came in and said we were done. He pulled Brady up and assisted him with taking everything off. When Brady sat up there was a literal puddle the size of a dinner plate under the small of his back. He had sweat so badly and was so uncomfortable that I couldn't believe he did it. He had indendation marks on this face and head from the straps of everything that was attached to him. As we walked back to meet Matt he told me, "That was harder than I thought, a lot. I don't want to do that again." I told him that he might not have to and of course that he was the bravest, most amazing kid ever!!! When we saw Matt, he looked very worried as our 1 hour scan was over 2 hours! I had no idea that much time had passed.

 

We met up with Matt and all decided that our next stop would be back up to the IV room to get that thing out! That process was quick and easy. Brady hadn't eaten since 10pm the night before, and by this point it was around 3pm. We grabbed Brady a quick hamburger from the cafeteria and went straight back up to the pediatric clinic. Our next stop would be to see Dr. Laquaglia. He was the surgeon who operated on Brady in April of 2009 and a very important member of the Neuroblastoma team at MSKCC.  Our hope was that he would be able to tell us the results of the scan and give us recommendations moving forward. As I stated in my last post, my hope was that he would tell us that we could be all done with follow up! Originally we had been told by his office that the scan would be at 7am and our follow up later in the afternoon which would have given time for a preliminary report to be ready from radiology. Now that less than an hour had passed since the scan, I knew we weren't going to get that kind of result. Frustrating.

 

We waited and waited. Brady checked out the fish tank and ate every snack I had in my bag.

I don't even remember what time they called us to see Dr. L, but it was after a few hours. Once in the exam room we waited another hour and chatted with a sweet NP named Liz. Brady was about to climb the walls when Dr. L came in.

If you have read the blog for a long time, you will remember Dr. L. He is a Chief Pediatric Surgeon at MSKK who operates not just on kids with NB, but all sort of solid tumors in children and adolescents. That is what the website will tell you, but what other cancer families will tell you is that he operated on their child's tumor successfully when other surgeons told them it was impossible. They will tell you they came from all over the world for Dr. L to operate on their child because his track record is better than other cancer surgeons. We will tell you that he is a kind and humble man who never rushes in his meetings with you and will only point to the sky when you try and make a big deal about what he has done for your child.

On this day it was clear that Dr. L did not really remember Brady's case. We have seen him several times and have even sent things down for him to review in recent years, but he was coming in cold and clicking on things as we were talking. That part was disappointing to me as we spent a lot of time sort of recapping, but we understand completely that he is a busy guy! He was rapidly pulling up images of old scans and trying to compare them to the new images that were just available from that day's scans. He had no radiology report to read or confirm anything. He thought things looked the same. He thought that when you look at a scan from 2010 and compare it to now, it is possible that there is a 4mm change in the tumor. He thought that the spot looked grainy on the screen which could indicate that it is no longer a neuroblastoma, but is now a ganglioneuroma (a mature, slow moving dinosaur as he described it). He questioned why we were not seeing one of the oncologists and I explained that I had asked that of his secretary who told me I should see him. He then said that he would present Brady's case to the Tumor Board (a multi-disciplinary team of oncologists, nurses, surgeon, etc) to see what the recommendation would be. He stunned us a bit when he said, "I don't think they are going to want me to go in there and get it out, but we'll see." Yikes. Tumor Board review is scheduled for June 24th.

He said just cold-reading the scan, he would recommend that Brady be scanned every year from now until puberty. The biggest risk is that this spot could cause trouble as the spine grows and changes. It sits right along the spine and then sort of does a sharp turn toward the spinal canal. Obviously there are many nerves in that area that could be affected as Brady grows and if the tumor grows. That is the rationale behind following it until puberty. Once his growth stops, we can safely say we are out of the woods.

So this is not what I wanted to hear. I wanted to be done. I wanted nothing more than to go out and celebrate that night knowing that I never had to bring my kid for another cancer scan. I was even hoping that we might hear the words "no evidence of disease." But it isn't what happened. I trust what Isaiah 58:5 says, "For my thoughts are not your thoughts, neither are your ways my ways." God's got a plan and I can find comfort in that. But I would be lying if I said I was not disappointed. I shared with a friend regarding my disappointment and told her that I do not let myself dwell on it for long. When I start to feel bad for myself or my child, I have to think no farther than one face of one sweet child that we saw at the hospital. Choose gratitude. Choose joy.

Here is a picture of Brady and Dr. Laquaglia from 2009 (just days after his 2nd surgery) and today.

 

 

We left the hospital and after a brief stop at the Ronald we decided to try a place recommended to us by a friend. We walked a few blocks to Brother Jimmy's BBQ. Brady LOVES ribs, and we had promised if he did a great job that day we would take him for some. He had ribs, a hot dog, French fries, and his first hush puppy. Yum!

 

On our way back to the RMDH we were stopped by a woman eating dinner outside another restaurant. She recognized us and I sort of recognized her from Facebook! Turns out it was Barbara Zobian, the founder and president of Candlelighters NYC. Her organization exists to encourage and support families of children with cancer, from diagnosis to remission. We were connected to Barbara on Facebook through our mutual friend and cancer dad Aaron Horn. (If you follow that link you can read about Aaron's amazing son Eli, a child who impacted my life in an enormous way). We had planned on meeting Barbara in person on Wednesday, so imagine our surprise when we ran into her on the street!

 

Turns out she only lives a few steps from the Ronald, and it also turns out that although small in stature, she is BIG on LOVE and ENERGY! In less than 5 minutes she introduced us to her friends and whisked us to her apartment. We enjoyed a great visit and she spoiled Brady like a kid in a candy store. First there was her adorable dog Uno who entertained us with tricks, then the snacks, and did I mention the floor to ceiling toy closet where she pulled things from nonstop! We left with bags full of treasures for Brady and his siblings. Barbara also insisted on making some more magic happen for us the next day. All she had to do was mention the Lego Store and Brady's eyes lit up. She made a few calls and told us be at the Lego Store at 3pm the next day for a surprise. This was going to be great.

 

Wednesday was to be our FUN day in between appointments. I am happy to report that the trials of the previous day did not linger in Brady's mind. He was ready to have fun in the big city! We decided to start our day the American Museum of Natural History. Brady was very impressed at my ability to "haul" a cab. I kept trying to correct him and tell him I needed to "hail" a cab, but it was so cute how he said it. We knew we had only a few hours so we decided to start with the dinosaur fossil exhibit. It was truly amazing.

After we left the museum we tried to find a very hungry Brady some lunch! We ended up at an Uno's (looking back, why did we eat at a chain restaurant?!)  Actually, I remember why! This little boy turned down two great ethnic restaurants. And he got his way.

 

After lunch we needed to kill about an hour and a half before the Lego store. We walked through Central Park.

 

Finally it was time to grab a cab to our Lego Store adventure!

 

Barbara had given us directions to ask for Fanni or Maria when we arrived at the Lego Store. If you have never been to this location, the store is right on Rockefeller Plaza and overlooks the area where the big tree goes up at Christmas time.

 

When we met our two Lego Masters and they told Brady that they had a big adventure planned for him! They started by giving him two smaller sets to build. But instead of taking them with us to build later, they sat right down on the floor of the store and built them with him! It was such a neat experience to sit in that spot while all the other shoppers hurried around.  Brady didn't need much help and Fanni and Marie were very sweet about him wanting to be independent!

 

See that big, ugly robot-looking sculpture? That is where the Rockefeller tree stands!  

 

 

 After Brady completed his smaller sets, Marie told him that his next job was to create his very own Brady-lego figure. He selected the head, body, legs, and accessories.

 

 

 I thought when he was done, that he would get to take his Brady-figure home. But...instead, Marie told him that he got to be one of a very lucky few who gets to put his Brady-figure in the permanent Lego display of Rockefeller plaza. Brady got to pick exactly where he wanted his guy to go and then Maria put it there. The coolest part, it will be there forever!

 

 As if this wasn't amazing enough...finally, they told Brady that he could choose some Lego sets to take home! He was so excited. It truly was better than being a kid in a candy store...a kid in a Lego store! Of course I called Eli and told him where I was. I gave him some choices of sets that they had that he would like and let him pick one we would buy for him. The awesome people at the Lego Store gave us a great discount on that set, which was so kind! We left the store and we both sort of looked at Brady and said, "Can you believe THAT just happened!" He was so excited and the trials of the previous day seemed pretty far from his mind. Mission accomplished, Barbara from Candlelighters NYC!

 

I texted Barbara to thank her and tell her what an amazing time we had. We were at FAO Scwartz when I texted back and forth with her. When she heard that she made another magic text and then told us to head to the 2nd floor so that Brady could get his face painted. When we got there, the artist was there waiting for Brady.

 

She offered to do any one of her elaborate total-face designs. Instead Brady wanted the Yankees symbol. She did talk him into a flaming baseball on the other side.

Here is a flashback to FAO Schwartz in April 2009 just before Brady's surgery.
Back then, Brady wore bunny ears all the time!                                              And now!

 

After this fun adventure, we walked back to the Ronald. It was a longer walk than Brady or I were in the mood for, but Matt said it would be a quick 15 minutes. 45 minutes and one stop in Central Park for Brady to use the bathroom later, we were back at the Ronald. It actually was a beautiful walk. We were just tired!

 

I love this picture of Brady on Park Avenue.

 

 

The next hour of our trip was probably the most difficult part emotionally for all of us. We were so tired that we decided to take advantage of one of the free meals put on at the House. Macy's was sponsoring dinner that night, so we headed to the dining room for pizza. This is where we saw many of the kids and families I talked about earlier in this post. These are not sights Matt and I haven't seen before. But for Brady, it was very hard. I want him to know what kids with cancer go through. I want him to grow to be a compassionate man who uses his experience to empathize with others. Yet I also wanted to grab him and run out of that dining room so that he never had to see what cancer can do to a child. We ate our pizza somewhat quietly that night. I tried to make eye contact with some of the children so that I could give them a smile and try to remember them so that I could pray for them later while recalling the details of their faces. It felt wrong to be there, the guilt was heavy. But please understand that one thing I did see in that room was hope. I saw dozens of the bravest, yet most emotionally exhausted moms and dads who were in the midst of a battle most of us cannot imagine. In the faces of children there was suffering, but then there were reminders of the joy that still exists in the heart of children even as their body fights off a cancer they didn't deserve. There was a little boy a few tables away from us with the greatest giggle. Despite his bald head and face puffy from steroids, his repeated laugh reminded me that God still somehow allows the innocence of a child to protect them from a total understanding of their circumstance.  As I sat there I thought of many of you, my friends and family at home, and how you were busy working on homework with your kids, or watching a t ball game. I sat and thought about how blessed we all are that this is not our reality. Thank you for letting me share these things.

 

We headed up to our room after dinner and we all ready to just relax before bed. But then Barbara texted! By this point she had caught on to the fact that Brady was a Yankee's fan. She told us to meet her in the lobby of her building right away because some Yankee's surprises were on their way. At this point Brady was convinced that Barbara was some sort of blonde Santa Claus. When we arrived at her apartment, one of Barbara's volunteers, named Amy, was there with a bag full of surprises from the Yankees! She gave Brady an awesome new Yankees backpack, umbrella, and wallet!

 

 

As if we hadn't done enough on this day, I decided I wanted some ice cream! We went to this great place right across the street from the House. It is called The Sweet Shop and I really, really liked it. It is a teeny-tiny little Willy Wonka style candy and ice cream shop. Brady had a tiny little chocolate cone (really, it was the size of a golf ball!) and Matt and I had Toasted Marshmallow Gelato served in a Chinese take-out box. It was amazing.

 

At this point we were quite sure we should go to bed. We had a busy Thursday ahead.

 

We had a scheduled appointment at 10:00 with Dr. Friedman. Dr Friedman is a pediatrician who works in the pediatric long-term follow up program. The program follows survivors of childhood cancer into adolescence and monitors them for late effects of their treatment. This was an important appointment for us as we have had not had anything like this at home.  I will take this little opportunity to tell you that of all the topics involved in discussing pediatric cancer, it seems as though the topic of late effects is the one that most know the least about. Some will say to me, "So, does Brady just get check ups now?" Well, sort of...but not exactly. You can read more about late effects here. The easiest way to think about it is to know that surviving childhood cancer is the first, HUGE milestone. After that milestone is reached, you begin the journey of learning about the risk factors you child has for complications due to their treatment. This is where the Long-Term Follow up Team comes in.

 

Dr. Friedman far and away provided the most comprehensive appointment we have had at MSKCC. I was so encouraged when we walked in because she already knew all about Brady and she and her team had created a folder of information specific to him! She gave us a chart that detailed Brady's treatment history including the chemo  agents he received and surgeries he has had. The chart detailed potential late effects and screening recommendations for each. This appointment was so very informative, yet it really broadened the scope of things that need to be on our radar.

 

The good news is that with only two rounds of chemotherapy, Brady received relatively small doses. Most of the late effects related to chemotherapy have been found in kids who received much higher doses. With that being said, even a small amount can pose a small risk. The risks we must monitor are:

-Neurocognitive dysfunction: Neuropsychological exam

-Cardiac dysfunction: Echocardiogram every 5 years

-Kidney/Bladder dysfunction: blood test, blood pressure monitoring

-Gonadal dysfunction/infertility: hormonal blood tests at age 10 and sperm analysis during puberty

-Secondary cancer: blood tests annually

-Dental problems: exams and cleaning every 6 months

 

The biggest risk factors for Brady are related to his surgeries, rather than the chemotherapy. We know that the laminectomy surgery and the position of the remaining piece of "tumor" both

place his spine at risk. While his spinal curves (both scoliosis and kyphosis) are in the normal range now (they were significant after his surgery, but improved), he is at risk for developing either or both curves as he hits puberty and his spine grows. We also know that because the remaining piece of tumor sits along his spine and then takes a sharp turn into neural space along his spinal cord, we need to watch it closely. Although it is likely not to grow, as his body grows there is a chance it could cause trouble with important nerve function. On our long list of future appointments is a revisit to the local orthopedic doctor. It has been a few years since we have seen him. He will continue to monitor Brady's spine with xrays.

 

Dr. Friedman gave us a copy of this important information so that we could share it with our local pediatrician and oncologist. One of my honest questions that I was able to ask is, "How can we possible coordinate all of these doctors and the follow up plan overall?" I feel as though no one (except us!) is really in charge of things. We have sought out this information, no one has really told us to. At Brady's last well-child check up I shared these concerns with his pediatrician and she did ask Dr. Friedman for specific recommendations. I am optimistic that she and I can work together to sort all of this out.

 

For now the big decision is whether or not to stay local or go to MSKCC for further follow up. I won't go into details of the pros and cons of both, but I will say that we are learning toward going to NYC each year. It is not easy on anyone to do so, but in the end, it is worth the trouble. I plan on calling Dr. Friedman soon to see if she thinks it is reasonable to wait until our trip next year to see some of the specialists I mentioned above while we are there. Or perhaps we will do some of the pieces of the puzzle locally. My brain hurts thinking about all of it. And did I mention that the other 5 members of this family have other health need that need to be attended to? Ha!

 

After our appointment we grabbed a quick lunch at a diner on our way back to the house.

 

 We had a few hours before we needed to head for home. Brady was totally obsessed with playing Ping-Pong in the playroom, so that is how he decided to spend our last few hours in NYC.

Honestly, the kid had a permanent smile like this on his face the entire time. And he NEVER wanted to stop playing.

 

After we checked out we made our way with our suitcases to catch a cab. Our job was to get to Madison Avenue across from the Crate and Barrel and to wait for a white van to pick us and a group of Corning execs up at precisely 3:30. We knew that the van would not wait for us if we were late or if we didn't see it. I can't explain how stressful this was for me! The traffic was insane and I couldn't imagine how we would find this white van. Thank GOODNESS for this nice young woman who was also looking for the van. Somehow she saw us with our bags and asked if we were waiting for the same van. Being with her made me feel better about finding it! At exactly 3:30 it pulled up amidst a sea of taxis, vans, pedestrians, etc.

 

 

We were on our way back to New Jersey to catch the jet back home. I wish I could say our flight back was as smooth as our flight down. It just wasn't. It was a really cloudy day. There was a rain storm blowing in and I think our jet came blowing in with it. I can handle turbulence, but there is something about being on a small jet and being about 12 feet from the front window of the plane, in clear view of the completely white thick clouds all around. You get a real perspective for just how much those planes are bobbing up and down and rocking side to side when you can see out the front. Brady didn't like it either.

 

We made it safely to the ground and I could not have been more relieved. After a 2 hour drive, we were home safe and sound.

 

That is the story of our trip! We have had some additional information since coming home. We received the final radiology report via email. There was nothing surprising in there. The spot is there, it remains relatively unchanged. It is in a tricky spot. Dr. Laquaglia is presenting Brady's case to the Tumor Board June 24th. They will finalize the recommendations for "treatment" moving forward. We are expecting that they will NOT want to operate at this point and that we should have yearly scans. We also received materials to do a urine collection in the mail. This was an oversight while we were in NYC and could have easily been done there. We will collect Brady's urine and then have it tested to check his catecholamine levels which are tumor markers for NB. Abnormal levels would indicate the presence of Neuroblastoma in his body.

 

If you are still reading, thank you for continuing to follow Brady's journey. We are so proud of him and how he handled this trip. We are so thankful for our parents who took such great care of Eli, Cara, and Allison while we were away. We are proud of them too as they handle Brady's extra "attention" so well. We try very hard to give each of them special time with us.  And thank you if you are someone who prays for Brady! Surely there are many more people in greater need of prayer, but that you might remember him, especially during the time around his appointments, is so meaningful to us.

 

We continue to trust in God's plan for Brady. We continue to treat each day with him and his siblings as a gift. Ask the other moms in the bleachers who see me reduced to tears when Brady makes a great catch on the field. I don't think there will come a day when I am not moved deep in my soul by the sight of him being a normal kid.

 

Ephesians 3:21-22

Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.

 

 

 

NYC 2014

I continue to say, "No news is good news," when it comes to this blog and this is the reason why I no longer write frequently.  It is funny to think how technology is different now compared to when Brady was in treatment in 2009. Had been Brady in treatment in 2014 versus 2009 I would be posting Facebook statuses from my smartphone, rather than waiting until late at night to post from an old laptop with slow internet service.

I do know that there are many parents out there today who have recently been told that their child has cancer. They have heard the words I heard on January 21, 2009 and are desperately searching the internet for answers. Sometimes that search leads them to a family's blog, like this one. I can say that many times I was able to find crucial information by reading someone else's story. I was also inspired with hope to read the stories of children who had walked a similar road as Brady and had not only survived, but thrived!

For the sake of those reading who do not know us in real life, I will give you a brief family update. Eli, Cara, and Brady are 7 years old and are finishing up first grade. They are in the same class and are doing some amazing things! They are all reading beautifully, learning their math facts, and writing great stories on topics such as,  "Why you shouldn't eat the school's nachos." Cara started piano lessons in April and is showing a lot of promise as a musician. Eli and Brady are playing t-ball again this year and are hitting from a pitch and making actual plays at base! Allison will be starting Kindergarten in the fall. As a "young" preschooler last year with a fall birthday, we opted to hold her back and start Kindergarten as an almost-six-year-old. I haven't regretted this decision at all, mostly because she and I have so much fun each morning until it is time to go to preschool. Allison knows everything and has something to say about everything. She is a natural leader and has a crush on a brown-eyed boy in her class.

So this brings me to the reason why I am writing tonight. Brady is now 5 years post treatment. For the past few years we have been going to our local hospital for his follow up care. He had scans every three months, then six months, and then last June we were told we could wait one year until his next scan. So he is due for a scan this month. We still follow a few other children who had tumors similar to Brady. One little guy we met in NYC has continued to go to Memorial Sloan Kettering for his follow up care. On his recent trip for scans (also 5 year post treatment) his family was told that he no longer needed to have scans done! The only difference between his case and Brady's is that his residual "spot" is no longer visible on his scans. We were told this could happen for Brady, that perhaps the tumor that was unable to be removed would die off and disappear. All of Brady's scans show that his spot is still there, although unchanged.

Our local oncologist, although wonderful and supportive, has seemed less sure of what our plan should be from here on out. I finally got up the courage to email him and ask if he thought it would be a good idea for us to go back to NYC and see what the Neuroblastoma team there would say. He replied and told me that he thought it was a great idea! We called and inquired about having Brady do his scans there. One advantage is that they will allow him to try and do so without having to go under anesthesia. Typically, Brady will be under anesthesia anywhere from 2 to 3 hours. The process rarely goes smoothly for him. We have been very unhappy with the care he has received and the different philosophies of the anesthesiologists that work with him. At Memorial Sloan Kettering they have some sort of video-goggle machine that allows him to watch a movie while the scan is performed. He will still have to lay very still during the scan. If you have ever had an MRI before, you know it can be loud and somewhat scary as you are squeezed in a tight space. I just know Brady can do it! I am fully confident that he will rise to this challenge and do a great job. There will be an anesthesia team on standby in case he is unable to complete the scan.

We will be in NYC from Monday-Thursday afternoon. We are once again flying out of Elmira on a corporate jet through the Corporate Angels program. Extra seats are donated by local corporations to be used by cancer patients who need to travel for treatment or follow up. We are so grateful for this amazing opportunity! We will land in New Jersey and then we have arranged for a car transfer from there to the city. We will be staying at the Ronald McDonald House which is only a few blocks from the hospital. Scans are set for sometime Tuesday morning. That afternoon we will wait at the hospital to see Dr. Laquaglia. He is the surgeon that performed Brady's operation in April 2009. He is an incredible man and an irreplaceable force in the fight against Neuroblastoma. He performs several operations a week that other surgeons have said are impossible. Children from all over the world come to NYC to have Dr. Laquaglia perform their child's operation. He will give us the results of the scan. We look forward to hearing his opinion on how Brady is doing and what our plan should be looking forward. I also can't wait to tell him once again how grateful we are for his role in saving Brady's life. I wonder if he gets the Christmas card I send him every year?

Here is a picture of Brady and Dr L from 2009. This was a few days after his 2nd surgery.

I am very happy that we will be able to get an updated picture. We also hope to ask Dr. L for any insight as some of the strange, but seemingly harmless, side effects Brady has from this surgery. He continues to only be able to sweat on one side of his head, from one armpit, and on one hand. When he is hot, his face has a distinct line directly down the middle with one side of his face being very red. We manage this by having him take frequent breaks and drink a lot of water. One of his hands was very chapped all winter, while the other was completely normal. And then there is the one armpit that requires a lot of deodorant. Teaching a silly seven year old to wear deodorant has been interesting. Doing my own research online, many parents report these symptoms to be Horner's Syndrome, sometimes called Harlequin syndrome. This happens as a result of aggressive surgery through the chest. Brady's second surgery was a right thoracotomy (sort of under his rib cage and then around toward his back.) By accessing the spinal tumor in this way, certain nerves are damaged resulting in these weird symptoms.

Wednesday we will have a free day to have fun! Perhaps we will go see some incredible fossils at the Museum of Natural History or maybe Matt and Brady can play catch in Central Park? I wonder if Brady will want to wear his bunny ears and take a carriage ride?

 

On Thursday morning we have an appointment with Dr. Friedman. She is a long-term care doctor and will talk us about potential long-term health risks that Brady faces as a result of his chemotherapy and surgeries. Our pediatrician wrote a letter with specific questions for this doctor. We want to clarify a good plan for Brady's follow up for the years to come. With only two rounds of chemotherapy, we are hopeful that Brady's risk of future cancer or sterility is low, but we were advised to consult the expert with our questions.

 

 

We will return home Thursday afternoon the same way we came. Once we land we will make the 2 hour commute home.

 

We would be honored if you would stand with us in prayer:

1. Pray for Brady and his composure during his scan. Pray for peace in his little heart so that he can complete the scan without anesthesia.

2. Pray for a clear scan! Pray that his pesky little "spot" will be gone forever!

3. Pray that the doctors would be able to confidently tell us that we no longer need to have scans done. To be released from this burden would be a HUGE victory for all of us!

4. Pray for our safe travel!

5. Pray for our parents and Eli, Cara, and Allison back home. Pray especially for Eli. He really loves his brother and has never been apart from him, except during Brady's treatment in 2009. He is so very sensitive and gets upset about medical things.

6. Pray for Matt and I as we interact with other cancer families. Pray that we can be a light in a very dark place.

 

One of the struggles I have had since Brady completed treatment is dealing with survivor's guilt. I have 4 healthy kids and am blessed to be able to watch my survivor thriving and growing. There is not a day that goes by that I do not thank God for my blessings and specifically for the miracles done in Brady's life. But I can say with honesty that cancer stole a piece of my joy and continues to do so. When we enjoy a family vacation or on Christmas morning, my heart bursts with joy. But then there is a moment when my eyes well up as I think of dear friends who have lost their precious child to cancer. When I see Brady make a great play on second base I feel tears of gratitude fall from my eyes as I consider we were once told he would never walk. I am so full of joy, yet the reality of what a thief cancer is always there.

 

I am very aware of these feelings as I prepare to go back to Memorial Sloan Kettering. Children and adults from all of the country and the world come there for their treatment. Many children come seeking their last resort of treatment. There is fear, sadness, and grief in that place. But there is always hope! I pray that we can be a light and that Brady can be a source of hope to others. I am trusting that the Lord will protect Brady's heart from any fear as he continues to understand the weight of being a cancer survivor.

 

Thank you for reading this update and for praying if you are willing! I will be updating during our trip on Facebook and will update the blog once we return.

As always we praise our Savior, in whom we place our trust. In our weakness, He is made strong!
Romans 5:2-5 Through him we have also obtained access by faith into this grace in which we stand, and we rejoice in hope of the glory of God. More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us.