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. image.jpeg

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!!!✈️

imageimageimageimageimage🎤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

IMG_4966

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

Update

This update is an effort to collectively respond to all texts, FaceBook messages, emails, and phone calls. Sorry!  I’ve barely even talked with Alli, much less responded to all of your inquiries on Mason.  This week has turned out to be the one of the hardest to date.  It took 3 full days to really get Mason’s pain under control and that has been all I could focus on.  Last night we finally slept decent-ish in between thousands (not even exaggerating) of beeps.  At one point yesterday, I think I used the terms “murder” and “stab” with one of the nurses when talking about the beeps while sleep deprived.  This was not a nurse that knows me well and I’m pretty sure she doesn’t want to get to know me now.  My joke came off as creepy and disturbing to her and I didn’t even have the energy to explain that I was kidding. After living in a hospital, I can’t even stand my microwave.  And, I despise the fact that our new washer and dryer default to playing music in the form of various repeated beeps after each cycle.  The beeping has become worse than listening to people chew!

Here’s where we are at the moment.  And, keep in mind the status literally changes hourly.  After all of this time managing pain, Mason was just unhooked from the final IV tubing.  It’s been a gradual process today to unhook everything from oxygen to fluids to multiple pain meds.  He’ll still have to be hooked back up now and then for magnesium, which we can’t seem to get up.  But, as of just a few minutes ago, he has officially been switched to oral pain meds instead of  IV in preparation for going home – possibly Monday. This is a huge step and we will not be surprised if adjustments have to be made in the next few hours to keep his pain under control.  In all of the surgeries that he’s had, this is by far the most pain he’s ever experienced.  His tibia hasn’t hurt at all (yet), but his hip is horribly painful.  He ended up with pancreatitis soon after surgery that they believe was caused by the anesthesia meds used.  This, I guess, is really painful.  Thankfully, he was already on major pain meds.  His stomach was really tender to the touch, but he said it didn’t hurt as long as everyone wasn’t pushing on it.  In a teaching hospital, EVERYONE gets to push on it.  The worst part of the pancreatitis was that he wasn’t allowed to eat anything at all.  So, he didn’t eat from Tuesday night until Friday.  This led to him feeling more weak and even more nutrient deprived. Thankfully, during most of that time, he really wasn’t that hungry.  He has eaten very little even though he’s officially back on a restriction free diet.  Big thanks to our friend, Jan, who happily fulfilled his request (and mom and dad’s) for Andy’s frozen custard as soon as he was hungry.

Since surgery, we have talked more about physical therapy than acted on it.  We, unfortunately, had a bad experience with the last surgery and doing PT that ended up being harmful instead of helpful.  So, we’re all a bit jaded.  I managed to voice loud and clear that Matt and I would prefer physical therapy via home health instead of being the pain inflictors this go ’round.  We are perfectly fine with parenting our children with firmness if that’s what it takes for them to be successful.  But, this entire experience is a lot for all of us and we felt we had to decline being his physical therapists. I think our concerns were heard and understood.  The problem, we are told, is that there just aren’t that many places that offer PT for pediatrics.  “Parents are usually capable of carrying out the directions.”  I kindly kept my mouth shut after that statement.  It’s not an issue of being capable.  If you were to tell me a year ago that we would have to learn half of what we have had to in order to care for our child at home, I would have told you NO WAY!  The medical care that we have taken on at home is likely comparable to a medical degree of some sort!  However, there is hope that we will have home health PT through Children’s Mercy in the near future.  Mason has sat up on the side of his bed twice, put shorts on twice, and today he pivoted with the help of a walker from the bed to the recliner that was touching the bed.  Each of these transitions could be heard down the hall.  And, this is not at all like what we are used to with Mason and pain.  He hurts like he’s never hurt before.  Recovery will be a long, hard road, but we will make sure he gets there.  Everyday at this point should get better.

On top of the surgical pain and pancreatitis, he has been running a persistent fever.  It’s a complete mystery as to why.  Of course, it could just be post operative (pray for that!).  But, there are so many factors that have to be considered in a case his complex.  They’ve cultured every possible bodily fluid twice since surgery and will do so again at 4am if he continues to run a fever into the night.  All cultures are negative so far – hallelujah!  We haven’t seen either incision and the hope is that we don’t uncover any dressings until at least Monday.  But, they are pretty stumped and may have to go that route if it persists.  So, throughout the last couple of days, Matt and I have had numerous conversations with multiple medical professionals about this fever.  In my very simple mom mind, I decided that there was a possibility that the fever was related to something not cancer or surgery related.  He’s on tons of pain medication.  If he were to have an earache or  a sore throat or something normal kids have, he likely wouldn’t feel these things because they would be masked by the morphine.  I mentioned that to one of the residents almost 2 hours ago.  She rolled her eyes and said she wished she would’ve thought of that.  Then she said she needed to go and find an otoscope.  Literally, as I’m typing this, she just walked in with a fancy otoscope on a pole.  It’s sobering to realize that the simple tools most kids’ doctors use on them are not even readily available here.  I want to go back to the days of taking my kid to a plain old doctor and having him/her use a stethoscope, otoscope, knee knocker and sending him away with a good report. Oh, how I took those days for granted!  Ok…so nothing obvious with ears or throat.  His heart rate is elevated so they are already considering putting him back on fluids.  THIS is why I can’t update…it changes hourly!

What I do know for certain is that Mason is starting to get color in his cheeks again.  He is cracking sarcastic jokes and overall acting more like the kid we know.  So, we will take all of these things as good signs and praise God that things are starting to look up.

One Very Long Day

Today brought me back to the day this journey started down in Kentucky on June 29th, 2015.  That was the first day in all of his then 8 years that Mason had truly experienced pain.  The ambulance was loud with screams and crying and the ride felt like 2 days instead of 20 minutes.  As I closed my eyes today in the PACU to hold back my own tears, I listened to Mason moaning and crying out in pain and it was like an instant connection in my brain to that hot, rainy Kentucky day.  I didn’t have Matt to take over so I could step away and compose myself (aka cry like a baby) because they would only allow one of us with him.  I had to bite my lip and be strong.  I realized today that as hard as this journey has been, there have been few days where he was in unbearable pain.  There have definitely been moments along the way when he has been in pain – like when they literally had to rip out his infected Hickman catheter or when we had to do physical therapy, or recover from numerous other surgeries – but none of these compared to today.  He didn’t smile when the nurse said, “Your mom is here now!”  He was terrified from the pain and tried to utter, “My hip hurts.” through his mask and dry throat. After 4 hours of minute by minute pain management and multiple times sedating him with meds to help him get through, he was finally stable enough to come to his room.  Up until the very last minute, the plan was for him to come to the PICU because of his need for constant sedation.  But, his pain was finally controlled enough to come back to the Peds Unit where he is comfortable and the nurses know him and care for him well.  We are all relieved that we escaped the need for the PICU as we are all more comfortable in our regular home away from home and we hope to be able to get more sleep than we would have in the PICU.  Plus, we are in the very best room and have a beautiful view of the city for what we hope and pray is our last time here for a while.

Mason is sleeping comfortably now and I hope to go to bed very soon.  This day feels like it started about a week ago.  He still has his two buttons he can push when he needs pain meds.  He hasn’t eaten anything other than 2 popsicles all day which is not typical for him on a surgery day.  But, he’s being monitored with every machine imaginable, so I feel confident he is in good hands and I can actually close my eyes tonight and not worry (too much).  Both surgeons feel like surgery was a complete success.  The femur margins came back clear in preliminary pathology and Dr. Rosenthal then cut one more time just to be completely sure he got it all.  The top of Mason’s femur is headed to 4 places in 3 different states very soon – Miami to Dr. Rosenberg, New York to Dr. Meyers, KU lab, and KU biospecimen research lab.  They were able to put an adult prosthetic in – bigger than what they had previously measured.  This is wonderful news because it means the need for future surgeries will be less.  Instead of 2 more surgeries until he is fully grown, he will likely only need one more surgery.  His right leg is currently 1.2 cm longer than his left leg to buy more time as well.  And, the crazy part about all of  it is that both surgeons said he can immediately start bearing 25% of his weight.  He has been non weight bearing for so long that it will be hard to retrain his leg to do a little work, but this is overall great news to get him back to walking again sooner.  And, he now has the best show and tell ever to start school with.  They actually gave him the plate and screws they took out of his tibia.  And, they are not at all what I envisioned.  He thinks it’s pretty cool and couldn’t wait to show his dad, Alli, and the nurses.  It just looks like something you would buy at Lowe’s and it was supposed to be in his body for the rest of his life.

Another fun fact we learned today is that Dr. Rosenthal also  knows Dr. Meyers in New York and has confidence in his ability to get us on the right path.  Both he and Dr. Tilley feel like Mason will easily be New York ready in 2 weeks.  We have our appointment set for August 15 and are still working out flight and lodging details.

….Ok…two hours later I am coming back to finish.  Now we are having what appears to be muscle spasms along the incision and major discomfort in his stomach.  Labs were drawn to rule out pancreatitis and they’ve started him on Valium.  It could be a long night. If any of the above doesn’t make sense, give me grace and do your best to connect the dots. I’m beat!

Pray for comfort and quiet so we can get some rest.  Praise God this day is almost done and an overall success!