Monday, August 3, 2015

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 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,
2 Cor 5:7

Friday, June 12, 2015

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.