Top 10 From NYC

Top 10 Things I Learned While in New York City

1. I love wide open spaces and am more claustrophobic than I thought.
2. I scream when I’m walking by the biggest Macy’s I’ve ever seen and rats are playing in the trash by my feet. (Matt just runs, even when pushing a wheelchair.)
3. The New York accent we were anxious to hear was replaced by accents from all over the world and we were lucky to find anyone who actually spoke English.
4. That tiny space on each street corner where the curb is a ramp isn’t even big enough for a juvenile wheelchair.
5. People in general are not friendly like they are in the Midwest. You walk with a purpose or you are vulnerable. Other than our hotel bellhop, only 4 strangers held a door for us while pushing a wheelchair.
6. New York taxi and über drivers are gutsy and extremely brave. The lanes of traffic are only recommendations. Bikers are even more brave. There is no good reason there are not more fatalities on the streets of New York City.
7. There is never, ever silence. I’ve never heard so many horns, police whistles, and sirens.
8. If I ever go back to New York City, it will not be with my husband. This farm boy was an absolute wreck. It was like torture for him.
9. The pizza and bagels in New York City are truly amazing and seeing the Statue of Liberty is breathtaking.
10. Grass and gas stations are almost non-existent.

We are home safe and it’s so good to smell fresh air! I only wish we had learned what we went to find out.

Waiting again…

I feel like I could probably copy and paste one of my previous posts and give today’s update. God is still working on that patience thing with us. It’s ironic in a city where no one has any patience and we feel like the most laid back people around!

We know nothing. NOTHING!!!! So frustrating!  Dr. Meyers said he and his team need more time. They had requested more slides from KU and received them on Friday. Given that this is Monday, they still need time. He said, “I’d rather be right than quick.”  And, he managed to give me the same look that I’ve gotten from so many doctors in the past when I asked questions. He welcomed them, but didn’t answer the big ones. Basically, today we agreed to participate in tumor genomic profiling. He said the only thing we really know for certain is that multiple pathologists agree Mason’s tumors are low grade. We don’t even know for certain anymore that we are dealing with osteosarcoma. When asked what we could be dealing with, I got that look that all doctors give me. I’m sure they don’t want a fragile mom Googling, but here’s the deal – now I will Google EVERYTHING!

As I type, we are sitting in a packed waiting room to get blood drawn for the genomic testing. Then we are free to go. We will have answers in 3-4 weeks.

That’s it. Just more nothing. Oh, except that even Dr. Meyers has never treated a patient with tumors in multiple bones. Good news – no more chemo – unless pathology looks drastically different that what we expect. Pray for wisdom and patience. 

Tomorrow is the big day!

Our time here in New York is dwindling fast. There are still so many things we’d like to do, but between the heat and the wheelchair, we haven’t gotten as much done as I had hoped. Then again, I have a bad habit of setting my expectations way too high. The heat index has been as high as 130 while we’ve been here and it wears us out fast. And, we’ve learned there’s no such thing as a breeze because you are between so many tall buildings that the air doesn’t really move way down low. The poor wheelchair. Oh my. It’s the only medical equipment we use that we don’t own. We rent it monthly. It’s not fancy by any means and it doesn’t do bumps and curbs well. Today, as Matt was loading it into the über for what seems like the millionth time it’s been loaded, a screw came out. Matt grabbed the screw and went on because no one waits for you here. Everything is rushed. Once we got to the Museum of Natural History, we borrowed a screwdriver and were good to go. I’m guessing after the use that thing has gotten in the last few days, this wheelchair will either go into retirement or we will own it forever. No one’s going to want it after all of the New York miles it has on it! I’m so ready for the day that we no longer need it.

Tomorrow is finally the day that this trip is all about. We will meet Dr. Meyers at 9am. It seems like we’ve waited so long for this even though it has been relatively quick. The emotions that we are experiencing tonight are all over the place. We are trying to plan our day tomorrow as its really our last day here. We fly home on Tuesday. The problem with planning is that there are so many ways this appointment could go. Will we feel like celebrating at the Statue of Liberty or crying in the hotel?  I’ve let myself get a little too hopeful that this is an end to our cancer journey. What if it’s only the beginning?  I know that God’s plans are so much better.  But, how is a mom not to worry? And on the other hand, how can I not be optimistic?  Sleeping here is difficult. Sirens and horns sound all night long. The heat wave has made it almost impossible to cool our 18th floor hotel room. And, then there’s my mind going in a million places. I’m ready for tomorrow and I’m not. Please pray. Pray for sleep so our minds can process clearly tomorrow and we’ll be able to ask necessary questions. Pray that Dr. Meyers and his team have had ample time to figure out what’s best for Mason at this point. Pray that we are strong enough to handle whatever we find out tomorrow.

Here are a few pictures from the past few days.

Fly Away!!!✈️

🎤Cause I’m leavin’ on a jet plane ✈️ Don’t know when I’ll be back again. 🗽

I woke up this morning with this song in my head and it’s still stuck. This whole experience is so surreal. God has stretched us in so many ways in the past year. And, He has literally showered blessings down upon us. We are anxious, hopeful, nervous, excited and terrified all at once right now. Every single thing up to this moment has fallen into perfect alignment for us for this trip. God has surrounded us with people who have helped us in ways we wouldn’t have even known to desire. I could go on and on about the numerous arrangements that have made this trip easier for us. This morning we were greeted at the airport door by a TSA employee whose mission was to make our lives easier to get through security knowing we had a wheelchair, a bag full of medicine, a metal prosthetic, and no idea how to maneuver the airport. All of this was possible because a friend of a friend is a TSA employee who now knows our story and has now offered prayer. While the security process took a fair amount of time and my full body pat down wasn’t the most pleasant, it was simple and I am so grateful for these precautions. The last time Matt and I flew was on our honeymoon, less than 2 months before 9/11. It’s definitely a more complex process now. We are currently on a full Boeing 737 that will take us non-stop to Laguardia as long as the weather holds up. We are on the very front row and Mason has progressed so much in the last week that he can easily use his crutches to go short distances, so that is a huge relief. Just 3 days ago, he was only able to use the wheelchair or walker. Alli and Mason have taken tons of pictures of the gorgeous clouds and giggled as they’ve experienced all of the firsts of flying. What a blessing just to be on an airplane right now! I hope they never forget all the feels of their first flight.

Some of the other perks that have fallen into place for us to make this trip easier and possible – our flight and hotel are FREE, we have tickets waiting for us to visit the Museum of Natural History on Sunday, Alli gets to see Wicked AND get a backstage tour on Sunday evening, and we have contact info for a handful of New Yorkers who are ready and willing to help us out if needed.

A greater Kansas City non-profit called Supporting Kids Foundation stepped up for our family in such a big way. This trip is completely possible because of them. This foundation was started by dads who have been in our situation with children who have medical needs and need funds quickly. Their goal is to allow families to focus on what really matters and not how they will afford it. They covered our flights and 2 nights in our hotel. The other 2 nights are covered by Memorial Sloan Kettering and would have been at the nearby Ronald McDonald House, but because it is under renovation right now, they cover the cost of a nearby hotel.

One of Alli’s teachers and musical directors just happens to have moved to Liberty from NYC and still has family in NYC. This teacher’s sister-in-law has so kindly offered to take Alli to Wicked for an amazing Broadway experience. This couldn’t possibly be any more perfect for a 13-year-old who loves theater!

Another friend who might be one of the most giving, big-hearted people I know has connected with several co-workers who live in NY and given us some wonderful, helpful advice on what to try to do while we are there and even scored the museum tickets for us.

And the best part about all of this? The prayer. We are covered in prayer so much that we can physically feel it. I can’t explain that, but I literally feel it. It’s crazy. I used to pray constantly asking God to use me somehow. I used to beg Him to let me be apart of His work. Just a tiny burning bush, please?! Then I’d know where or how to join him. I even tried to push it at times. Who wouldn’t? I almost feel like God was testing me a little. There were a few experiences right before Mason’s diagnosis where I did some crazy things. By crazy, I mean crazy in human eyes. Matt and the kids may have thought I was losing it a little. I stepped way out of my comfort zone to offer my help to strangers on a few occasions. That Carrie Underwood song, ‘Jesus Take the Wheel’ literally happened one day. While my help was not life changing for these few people, I know Jesus led me to each of them. I learned from these experiences and yearned for more direction so that I could do good for God. It was actually very exhilarating! And then cancer hit. And nothing was exhilarating and I felt abandoned and unloved. I am so grateful that I wasn’t allowed to linger in that place for long because God didn’t allow it. We’ve seen him move so much throughout the past 14 months. We are better people because of it and our lives are forever changed. While we yearn for normalcy, I pray our normal will never be what it once was. I pray we are so much better human beings during the time we have left on this Earth.

I will do my best to document our time in New York and share with all of you who continue to pray. Pray BIG! Pray that the doctors have all had time to consult on Mason’s case and have come to an agreement that is what is the very best for him. Pray for our safety as we navigate. Pray that we encounter the people God would have lined up for us to meet along the way. Pray that we take the time to notice and live in each moment. And speaking of prayer, here is a list of places that we know for sure there are people praying for Mason and our family. It’s humbling and we are grateful.

Missouri
Kansas
Nebraska
Iowa
Minnesota
Arkansas
Kentucky
Alabama
Connecticut
New York
El Salvador

Oklahoma

Tennessee

Maryland

Georgia

Illinois

Arizona

Texas

 

If you’re reading this and praying, please let me know if I need to add your location!

We just landed safely! Laguardia is a tiny bit busier than KCI 😉, so we’re waiting our turn to get off the plane. We had great flight attendants and an excellent first flight.

#PrayforMason

#BarnardsDoNY

 

 

A Bruise in my Arm and Joy in my Heart

Something really great happened this week at our little white church.  There were lovely, familiar faces and kind strangers.  There were experienced givers-of-life and people with sweaty palms and nervous grins pushing themselves way out of their comfort zones.  There were TWENTY-SIX people who gave blood that had never given blood before!  And, can I be totally honest?  I was one of them.  Yep.  Until this week, I had never given blood.  Pure shame.  When I was in college and wanted extra spending money, I gave plasma once or twice.  Not because I wanted to help someone, because I wanted the money.  I’m sad to admit that I could have been giving blood for more than 20 years and I haven’t.  The importance of it never even resonated with me until I sat with my sick little boy and watched someone else’s blood drip into his body.  And, then I did it again, and again, and again… SIX times in only a few months, Mason has needed blood.  Six times I sat with him and prayed that his little body would happily accept this stranger’s blood and not reject it.  Six times I sat with him and prayed for that stranger who selflessly gave to my little boy without anything in return.  I asked God to give that stranger blessings upon blessings for what he or she had done.  I shook my head repeatedly at what an idiot I’ve been my entire adult life and I vowed to never be that selfish again.  And somewhere in the midst of all of this, a friend from church said she wanted to help somehow.  She knew the twisted road that cancer was taking us on and she has little boys of her own and a  big heart.  And she knew that blood donations had saved Mason repeatedly.  So, she asked permission to do a blood drive in his honor.  And I am so grateful.  Fifty-eight pints of blood were donated over 6 hours and 174 lives can now be saved.  I have a tiny bruise in my arm and joy in my heart because of it. Of those 26 first timers, I only know of 4 for sure – me, my husband, my best friend, and my pastor.  And, I can tell you without a doubt that 3 of those 4 were the sweaty-palmed, pale as a sheet kind of first time donors.  And, I am so proud because there were many ways we could’ve spent those minutes, but I can’t think of anything more important.  And, if you are where I was and shaking your head at yourself…I have to tell you it really was so easy!  I can give again in 8 weeks and I already have it on my calendar to do so.  And, the great thing is that I’ve lost count of the number of people who told me that they wanted to come to the blood drive, but they had already given blood in the weeks prior so it was too soon.  Many of those people had given because they knew of Mason’s fight.  And others who live elsewhere gave in their cities because of Mason.  Some of you have asked why we need so many people to give blood to Mason.  That was not the goal of this at all.  Mason was just the face that made the need become real in our minds.  He will likely not get any of the blood given this week.  I pray he doesn’t need it.  But, the blood bank has a greater supply because of what we gave.  And the next person who needs blood will get what they need because people gave.  And, that was  our goal.  Can you imagine needing blood and being told, “Sorry.  We’re all out.”?  If I always have a little bruise in my arm, I’m doing my part.

Still Here

Well, we are still in the hospital. Unfortunately, our reality was that Mason just wasn’t ready to go home today. He is still in a lot of pain and moving even the slightest is excruciating most of the time. We are still working toward a balance of oral pain meds that will allow him to come home comfortably. We made some progress today and are still working toward weaning him from IV pain meds. Another major reason we had to stay is that one of the many cultures drawn finally grew some bacteria. That meant we had to start antibiotic #4 since surgery and be monitored closely. Pray he doesn’t end up with C Diff because of this. He has very little appetite, but says his stomach feels fine. He wouldn’t have eaten anything at all today if he had his preference. He got a few bites in all day long. He’s pretty grumpy and on edge because of the pain. I miss my sweet boy. His physical therapist has become his enemy, but he is making slow but steady progress. He used a walker for the first time today to transfer from the bed to the wheelchair. This really is no life for a 9-year-old. I trust each day will get easier at this point. We have to get him more mobile soon. We leave for New York on the 12th!  We are so hopeful for good news. #PrayForMason