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.