Friday, June 20, 2014

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.
 
 
 

Saturday, June 7, 2014

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.


Thursday, August 8, 2013

The Why


January 21, 2009 was a long time ago.

It's been 4 1/2 years since Brady's diagnosis, but it feels more like 10 years.

I think it has more to do with the fact that we have been busy helping 4 babies grow into kids than anything else, but nonetheless, it seems like ages ago.

There are days when I am tired and I start wondering if we should continue raising money for pediatric cancer causes. I am embarrassed to admit that, but there are days when homework, t ball schedules, illness, and just the ordinary challenges of parenting convince me that I don't have the energy for anything else. I begin to wonder...why?

But then a catch a glimpse of a picture that sits on a shelf in my living room. In the picture, a smiley-faced boy about 20 months old stares back at me with a bald head. Although you can't see it in the picture, under his footy pajamas are two tubes that stick out of his chest awaiting the next round of chemotherapy. When I see that picture I can literally feel my heart break as I remember being THAT mom holding THAT child.

That is WHY.

Sometimes it is not the limits of my own time and energy that make me question the small efforts we make in this fight. Sometimes I just start to wonder if what we try and do really makes a difference. Our goal this year is to hit $10,000 in total monies raised in the past 5 years. That sounds like a ton of money, but in actuality, $10,000 only funds approximately 200 hours of research. Is that enough to make a difference?

But then I read my email for the day. Each week I hear of a child (some weeks 2, 3, or more) who have lost their battle with Neuroblastoma. I read about families in other countries who are desperately trying to fund a trip to the US to meet with a doctor who might be able to save their child. I read about families who have lost babies, Kindergarteners, and teenagers to slow, agonizing deaths because of cancer. I read about families who have been financially devastated, whose faith has been shattered, and marriages that have ended because of the devastation cancer causes.

And I am reminded...This is WHY.

When I see Brady running on the soccer field, writing his name on top of his homework paper, and chasing his brother across the yard, I am reminded of the miracles that have brought us to this place. He is a survivor, and we are so humbly thankful for that. But just like 2/3 of all pediatric cancer survivors, he deals with long term side effects from his treatment. He cannot sweat out of half of his upper body and face which means he gets hot (and stinky!) faster than other kids. He is at increased risk of scoliosis and other spine issues in years to come because of his radical surgeries. And then there is "the spot" that we continue to monitor.

And then I know it. This is WHY.

Please know that we understand that there are hundreds and hundreds of causes that need your support. Please know that the prayers you so willingly say on our behalf mean more than any financial contribution you can make.

But if you feel led to do so, please help us by supporting our stand this year. It is our 5th Annual Alex's Stand and we are hoping to make at least $1,650 in order to hit that $10,000. Details about how you can help can be found on my Facebook page or below.

Williams Family 5th Annual Alex's Lemonade Stand
September 1st and 2nd, 2013 at the Oakfield Labor Days in the Park Celebration

We cannot do this without the amazing support of our friends, family,
and community. Here is how you can help:

1. We need volunteers to work at the stand! Working is easy and a great
opportunity for kids and families to get involved. Let me know if you can
cover one of the shifts below:
Sunday September 1st
12:00-2:00
2:00-4:00
4:00-6:00
6:00-8:00
8:00-9:30

Monday September 2nd
*Our family has been asked to help judge the parade this year! I am really
in need of some great volunteers to help before/during/after the parade!*
9:00-11:00**
11:00-1:00
1:00-3:00
3:00-5:00
5:00-7:00 (take down-muscles needed!)

2. Help us fund the supplies needed to have our stand!
--Donate a Walmart gift card (approximately $80 needed to purchase
ice and baking supplies)
--Buy a large container of Country Time Lemonade (yellow) at
BJs for $6.99. We need approximately 8 of these. Let me know if you
can help in this area. Lemonade can be dropped off on my back porch
or I can pick it up from you:)
--We also need approximately $70 in supplies from Batavia Restaurant
Supplies (cups and boxes for baked goods). If you would like to make a
donation toward these supplies, you can write a check to Megan
Williams or better yet, come shopping with me:)
-$150 has already been spent on application fees and health department
certification. THANK YOU FOR YOUR HELP with our up front costs!
Your donation toward supplies will multiply into a GREAT BIG
DONATION to Alex's!

3. Make a donation directly to our Alex's page. This donation is
tax deductible and will count toward our total. Follow this link:
http://www.alexslemonade.org/mypage/114525

4. Join our baking team! Every year we bake hundreds of lemon cookies,
lemon bars, and lemon poppy seed muffins to sell. This is always a fun time
and we are generally done in less than 4 hours. Our baking day will most
likely be Saturday August 31st, later in the day. Details to come.

Thank you friends, family, and neighbors for the love and support
you continue to show Brady. Let's all come together again and
do something for the many, many kids still in the fight.

Galations 6:9
 Let us not become weary in doing good,
for at the proper time we will reap a harvest if
we do not give up.

With hope,
Megan



Saturday, April 6, 2013

Tell Me About Miracles

Sometimes when you least expect it, God blesses you with a moment so powerful, so unforgettable that it takes your breath away. In those moments there is no way a person on this earth could convince you that the Holy Spirit isn't as present in the room as the oxygen you breath.

I had a moment like that this evening.

Tonight looked like any other Saturday night in our busy home. Matt was upstairs bathing the kids while I was in the basement piecing together 4 outfits for them to wear to church tomorrow morning. I pulled a few dress shirts and dresses from the ironing mountain  pile and opened up the ironing board. I began my task and just as I did I heard the sound of a basketball bouncing on the concrete floor.

I looked up to see my soon-to-be six year old Brady who said, "Hey mom, watcha doin?"

"I'm ironing something for you to wear to church tomorrow buddy. You are going to be super handsome!"

"Hey mom, watch me dribble! I'm better than Michael Jordan!" he said as he rapidly switched hands back and forth to bounce the ball.

"Michael Jordan, huh? Maybe you will be someday, but for today, you are a miracle!"

"What do you mean a miracle? Because I'm dribbling?"

And so it began. It started like other conversations that we have had over the past 4 years. As a parent to a young cancer survivor, I'm challenged as to how and when I should "spill the beans" about the whole cancer thing to my innocent child. I liken it an adoptive child's knowledge of how he comes to be part of his adoptive family. I think experts agree that the concept of adoption should always be part of a child's life story, but perhaps the details should be explained over time as the child matures. This is the same sort of philosophy Matt and I have used with Brady so far.

"You are a miracle Brady because you are dribbling that ball. And 4 years ago today you were a very sick boy who was far from home having surgery."

"Oh, I remember that story, about my scars. So what happened that day that was a miracle, mom?" he asked still dribbling.

I  told the story of April 6, 2009. The day the skies poured rain and we walked him from the
Ronald Mc Donald house in Manhattan to the hospital where the best Neuroblastoma surgeon in the world was waiting. I told him a few details like that, but mostly I told him about the miracles.

"You had an opertaion to take the rest of the cancer out of your body. The doctor told us that you would have to go to a different hospital after your surgery to a very special place (ICU). You would have to stay there for a few weeks at least and that we wouldn't be able to talk to you or see you awake for a while. But there were hundreds and hundreds of people who prayed, Brady."

"So did that happen mom?"

"No it didn't! God heard the prayers! You didn't have to go to a different hospital. You didn't need a special breathing machine, and you woke up very quickly. And the coolest part of the story? We brought you home 5 DAYS LATER! It was a miracle!"

dribble.dribble.dribble....Then he stopped. He jumped up in my office chair, basket ball in hand and said, "Tell me about the other miracles God has done for me."

My heart pounded. The tears came. Could there be a more precious moment in time for a mom? My thoughts raced, "Oh God, how you have redeemed this terrible darkness in our past. This moment, this time with my child, I thank you for showing me the beauty you have created from what was so evil."

"Well buddy. There have been a lot of miracles. You are a triplet! That's a miracle!"

"So Eli and Cara are miracles too?" he asked with a scrunched nose. "Absolutely.And Allie, too" I said.

I went on to tell Brady that he was a baby something wasn't right. He wasn't walking like his brother and sister and he was upset a lot. He listened as he held that basketball, he listened with such a focus. I kept ironing to keep myself from sobbing as I told him how no one could figure out what was wrong. I told him that God gave me a strong feeling that we needed to keep searching for the reason that he wasn't walking. God told my heart that something was very wrong. The way God speaks to mothers, deep in their soul, that is miraculous.

I could have told him about the insurance issues we had leading up to his diagnosis. Our requests to scan his back had been denied multiple times by our insurance. Miraculously we had to change our insurance just weeks before his scheduled brain scan. And miraculously, the new insurance agreed to scan his back where doctors would find a raging tumor. These aren't details for a 5 year old boy, but certainly will knock his socks off someday.

His face sort of settled on top of the basketball as I told him that he came home just before Easter and within a few weeks, he was walking! After he learned to walk, he learned to run, then jump. With intensive physical therapy he learned to ride a bike, and to climb! One miracle followed another until we just learned to expect them!

"And so now I can do this mom?" More dribbling.

"That's right Brady boy!" I replied as the tears fell onto a wrinkled Sunday dress on the ironing board.

"It sounds just like the story in the bible mom. Jesus healed the blind man and made it so that he can see! It is a bad thing not to be able to see. You can't see your birthday cake, or your presents, or even yourself!"

"That is bad. And yes, it is just like that! God healed your body so that you could walk, and run...and dribble!"

"Well, what would have happened if he didn't heal me?" my very logical boy asked.

Do I?

Don't I?

Is it time? Is it okay to talk "what ifs" with your 5 year old?

A peace that is indescribable came over me and I said, "Well, the cancer in your body would have kept growing."

"Would it have come out of my eyeballs? Gross!"

"No, but it would have grown so big that your body would not have been able to work."

"You mean, I would have died????????"

"I don't know sweetie. But what I DO know is that you are here right now. And you are healthy! God healed you! And you are a miracle!!!"

A few seconds passed. Wheels turned in that precious little head.

"Okay mom! Bye!"  And off he went. Up to the bathtub.

As the ball rolled across the floor toward me, I listened to his feet go effortlessly up the stairs.
I fell to my knees.

 Tears poured.

God was there.

Gratitude, love, and everything amazing overwhelmed me.

I spent a few minutes there on my basement floor. The contrast of my yucky, dirty basement floor and the beauty of what had happened was incredible.

God does his best work in the messiest places I think.

After the kids were tucked in bed, and before my husband and I settled down to watch the big game, I looked up the story of Jesus healing the blind man.

John 9:1-3
As he went along he saw a man blind from birth. His disciples asked him, "Rabbi, who sinned, this man or his parents, that he was born blind?"

"Neither this man nor his parents sinned," said Jesus, "but this happened so that the works of God might be displayed in him."

Jesus goes on to heal that blind man, which is the part of the story that was very familiar to me. But this other part, from verse 3, I had forgotten about.

"This happened so that the works of God might be displayed in him."

The works of God have been displayed. Miracles on display. Miracles not to be forgotten, but to be explained to our children through the years. Miracles that have happened not because we are more special than anyone else, but they happened so that God's handiwork could be evident to those around us.

This, this, this is what it is all about.

What a night.

Sunday, January 20, 2013

It's Been Four Years

      Tomorrow is the 4 year anniversary of Brady's Neuroblastoma diagnosis. There are so many dark memories of that day and those that followed. It's would be so easy to dwell on that aspect of things. And truthfully, there are moments when I do. But this January 21st, I am choosing to focus on the greatness of my God. He has seen us through those dark days of diagnosis, surgery, chemo, more surgery, and healing. And for reasons I hope to one day understand, he has restored our family and blessed us beyond measure.
       As the mom of a survivor, it is so hard to fully "accept" that my son is alive and well. Some call it survivor's guilt, I just recognize it as an intense awareness that for some, the fear that I carried for so long has become a reality. That some must walk the path of life after losing their precious child breaks my heart into a million pieces. But my trust in a Savior that promises that he works all things together for our good allows me to continue to mourn with those who have lost, while still praising God for Brady's healing. What a delicate balance that is.
    I sat here tonight and read through the notebooks I used during the time of Brady's illness. I had one where I kept medical notes, phone numbers, and questions I had for doctors. The other notebook is where I kept lists of cards that were sent to us, meals that were made, fundraisers that were held, and donations that were given. I am in awe, even four years later, at the amazingly generous people that God put in our life during that time. I have pages and pages of names of people who supported us. I read the cards again and just cried. We NEVER felt alone. Thank you if you were one of the hundreds who prayed, gave from your own family's money, took time to write a note or make a meal, or showed that you cared in some other way. Matt and I are forever challenged to give more generously and to step out and help those in need.
     I also came across some notes that I had written for the time I spoke at the Genesee Cancer Assistance Festival of Hope. One of the last things I said was, "I like to sit and think about years from now, when Matt and I watch Eli, Cara, and Brady graduate from high school. On that day I am sure that I will be reminded of his battle with cancer. But all of those years from now, I pray that I can look back on his journey and feel proud that my son was a warrior against cancer. It is my hope that God will continue to use Brady's life and story to inspire hope in others for many years to come."
      Yes, yes, yes! I still feel this way. Brady is just a 5 year old boy. But, his little life is a testimony! It is always my prayer that through his story we can point to Jesus. Our hope is in him, and we trust that he will continue to use Brady's life to bring people into a closer relationship with him! So today we celebrate how far God has brought us as a family.

Those who have read the blog for years will probably remember these pictures!

(warning: some images are graphic!)


The first time I held Brady in the ICU after his spinal surgery (Jan2009), the day he was taken off the ventilator.
 
 The ladies from Angels of Mercy praying over Brady at a benefit in his honor. I thought, and still do, that he was so handsome with a bald head!

 
 
 
                               Adjusting to life with a Broviac catheter for chemotherapy.



       
                           At Memorial Sloan Kettering (remember those bunny ears?)
                                                                just before his 2nd surgery.
              

                                          ;

                                       Recovering after 2nd surgery, while still recovering from the first!
 
 
 
 
Learning to walk, ride, and get stronger through months of physical therapy.
 
Committing as a family to help raise money for pediatric cancer research and to raise awareness!
 
 
 
These 4 blessings are the light of our life. They are as close as can be and Matt and I couldn't love them any more than we do! 
                               

                                    I can't wait to see where the next four years will take us!
 
(photo courtesy of Kristen Hamm Photography)
 
Jeremiah 29:11
 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.