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.


  1. Oh, Megan. Where are my words? I just now read your account of this last episode in your family's journey. Your strength is amazing!
    It crossed my mind that your accounts might be a

  2. Sorry, my iPad sometimes locks up in Comments.
    What I wanted to say is that when Brady is older he can learn/remember this part of his life through your words recorded here. What a gift!
    God bless you, continuing on as He already has!


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