Inside Out

As I try to put into words how life is, post cancer, it’s hard to explain. Grateful. Sad. Guilty. Scared. Excited. Loved. How is it possible to feel all of this at once? As you know, this forum serves as my therapy…so here goes, and thank you.

I’m forever changed. My whole family is, really. Some of that change is good, and some of it is ugly and hard and I want so badly to shake it.

Grateful. If it wasn’t for cancer, I would never know my son the way I do now. I would never have been able to finish his sentences and him mine. I would not have learned his quirks and his sense of humor like the back of my hand. I would have loved him well, but missed out on knowing him so deeply. Sometimes I try to picture my relationship with him at this point minus cancer entering our lives. It’s silly and torturous because it always makes me sad. I instantly picture him running long for a catch and then doing a little happy dance because he caught the baseball. I smile for a moment and then I ache for my boy who hasn’t been able to run or happy dance for almost 2 years. But, I’m also sad because if that was Mason, it would mean I didn’t come to know him deeply. Crazy, right?
Sad. It tends to hit when I least expect it. There are foods that Mason has asked me never to serve him again because they are associated to a memory in the hospital. I sometimes feel paralyzed in the kitchen as I try to determine what to make for supper because I don’t want to stir up any memories of chemo. He used to love bacon. It could have been served at every single meal and he would not have complained. His love of bacon turned into a massive craving of bacon to the point where his favorite nurse, Cathy, would bring him bacon. One day in the hospital when he had been put on a calorie count because he was losing weight quickly, he ate 36 slices of bacon. Cathy and I joked that he would definitely not need a calorie count much longer at that rate, but we weren’t sure if his heart would survive his new diet! Bacon became a way to show Mason we loved him. We even had bacon shipped to us from Kentucky and friends showing up at the hospital and our doorstep with bacon. I know it sounds silly, but the fact that Mason will no longer eat bacon and the smell of it makes him feel sick, makes me sad. There are a handful of foods with similar stories and sometimes just going grocery shopping creates a lovely reminder of the evils of PTSD.  

Guilty. Tonight I got a healthy dose of sad mixed with guilty as I came across a story written by a mom of a 10-year-old boy who is battling cancer. The image that accompanied the article looked strikingly similar to Mason in the thick of sick, sick cancer. It was a picture I never, ever would have shared because Mason begged me for privacy along the way and I tried to honor his wishes. He wanted no one to see his bald head or the tubes coming out of his chest. He definitely didn’t want people to see him when he was having a bad day, like this boy was clearly having – and had every right to have. He didn’t want people to know about the conversations we would find ourselves having about dying or the way he became so physically dependent on his caregivers for things that most kids take for granted. While I have a few pictures of these moments, they are mostly carved into my memory. They are carved in the deepest crevices that I can’t possibly forget even though I’d like to because they haunt me. The words this mom wrote, I get. I feel her pain deeply and then I feel incredibly guilty because there are countless families that are not lucky like we are. They have not come out on the other side with healthy children. And, they definitely have worse things to be sad about than bacon.
Scared. I’m scared that one day we will realize we were ignorant and should have never ended his treatment. I’m scared because our story feels too good to be true. I’m scared constantly that the other shoe will drop. I read of others on their journeys who have scans and get the “all clear.” It’s not that way for us. We had scans a few weeks ago and it’s just kind of assumed that no news is good news. We got a preliminary reading of “all clear” but we’ve had so many instances of “unusual findings” or “rare detections” after the preliminary reports that we don’t ever really know when to call it good or done until next time. I know this will get a little easier over time (or I hope because we have 10 more years of repeat scans). But, when our whole journey has been completely unlike any case known, it’s enough to bring in unsettling fear. That being said, it’s been 17 days since his last scans and I have to believe that if there was something to be noticed, it would have been found by now. So, we are 3 1/2 months away from doing it all over again.

Excited. If you asked me how Mason is doing, I would excitedly say, “Great!” and I would mean it. Because sports are still way beyond reach due to his physical limitations, we encouraged him to try something new. He decided to give piano lessons a try and he actually loves it! I’m not naive enough to think that we won’t be yelling at him to practice soon enough, but I recognize what a blessing it is that he truly enjoys it. And, I know that the benefits are unlimited for years to come if he sticks with it.

 He’s going to an amazing school every single day. He’s a little ornery, especially in the lunch room. He has some of the best friends a boy could have. He will receive an award for Courage next week, and gets to take his family to Disney World in a few short weeks thanks to Make-a-Wish! I mean, how can we not feel excited considering how far he’s come? 

Loved. God has chosen to let our little boy defy the odds and live. He gave us so many gifts along the way through His people. I’m learning of new people every couple of weeks who have been following our journey and were somehow inspired to live life a little better or more meaningful because of our story. When we first hit this difficult road, we recognized most of the little things – and big ones – that fit together to make our lives bearable at the hardest time. We recognized them as gifts that only God could orchestrate. Now, looking back, we can see the big picture even clearer and it’s extremely humbling. We are loved by our Creator. The deeper we fell, the more we had to rely on Him. We can now truly know Him as our Provider, Comforter, and Father.

Thanks for making it through therapy with me and listening through all of my feelings as I try to figure out how one lives post cancer. I feel like I have a new set of lenses that I see life through now and some of that newly gained vision is a gift and some is a curse. Your prayers for our family are such a gift. I hope you will also pray for the little boy, Drake, and his mom that I mentioned above and countless others that are in the battle of their lives. 

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Cancerversary

Today is a bag of mixed emotions, a day I’ve been dreading yet looking forward to at the same time. January 11th will forever be remembered in our family. Even Mason mentioned on the way to school this morning, “Today is the day I was diagnosed.”  Today my heart feels very fragile. I may burst into tears with absolutely no warning. Or, I may laugh until it hurts. Maybe we should stop and pray for every single person I may encounter today!

We have so much to celebrate today. The fact that we have a happy, healthy boy today is nothing short of a miracle. Three diagnosis later, we can fairly safely say Mason will not need to be inpatient or undergo any more chemo in the near future. Our family is in tact and stronger than we started. We saw God move repeatedly over this past year. There is still so much confusion over Mason’s case, medically. But, I can’t shake the fact that hundreds of people praying for God to do mighty things isn’t the cause of this confusion. I’m ok with not understanding fully, but knowing that God does – most of the time. 

Squeeze your people tightly today. Thank you for your prayers that have gotten us here. A full year later, we still have our boy.

Goodbye 2016

As we say goodbye to 2016, it’s easy to say good riddance to the hardest year of our lives. We are forever changed from what we’ve been through this year. In just a few days, the anniversary of Mason’s cancer diagnosis will hit. But, we waited a very long time for that original diagnosis as the scare really came a full year and a half ago. A large part of the past year and a half has been waiting. If I counted the days we spent waiting, I’m sure it would make me sick! Just this week we ended the most recent wait as the preliminary results to our 3rd opinion from Mayo finally came in. We have yet to see the written report, but Mayo has finally weighed in via phone to our team at KU. The news we received was not surprising. “This is a one of a kind case that made for a very difficult diagnosis.” (Yep, that’s our boy. ūüôĄKeep talking.) In a nutshell, they are basing their diagnosis mostly on the genomic profiling that we had done in New York. And because of this, they agree with the doctors at Memorial Sloan Kettering. However, they do admit that no diagnosis is a perfect fit. And, everyone agrees that pathologically Osteosarcoma and Fibrous Dysplasia look almost identical. To recap:

Diagnosis #1 in January 2016 – Osteosarcoma

Diagnosis #2 in September 2016 – Fibrous Dysplasia 

Diagnosis #3 in December 2016 – Fibrous Dysplasia

We can look at this as a tie breaker and go with the less evil diagnosis and continue to monitor with less frequent scans. The scariest part of this diagnosis is that Fibrous Dysplasia can actually turn into Osteosarcoma. Or, we can look at this as we have been since January. Dr. Rosenthal has said from the very beginning you could give him 5 different diagnosis and he would 1) treat the most aggressive one and 2) trust our first pathologist over anyone else because he’s ranked #1 for a reason. The fact remains that we have already treated the most aggressive diagnosis. So, again, we just need to decide how often to scan and what kind of scans to do that aren’t adding more risk than necessary. Exposing Mason to radiation of many of the scan options repeatedly can also give him cancer. 

As I’ve said before, it’s really hard to sit and wish we hadn’t treated Mason so aggressively as we watch him struggle to be a normal little boy who can run and play like his friends. And, I’m convinced that knowing what we knew at the time, we would have never made a less aggressive decision than we made. We were seriously terrified of losing our little boy and his tumors appeared to be getting more active and larger quickly. As much as I wish we had not done chemo or most of the surgeries, all causing us to spend a good part of the year living in the hospital, we had to do what the medical experts advised. We trusted them, and honestly, we still do. It’s called the practice of medicine for a reason. There is much more gray area than black and white.

We will head into 2017 focused on being wise and vigilant with Mason’s care. We will continue physical therapy as long as it takes until he is running again. We will demand open lines of communication with his medical team. We will make a commitment to never being the same family we were before “cancer” hit. We will constantly remind each other of our priorities in life. We will love each other better. We will learn from all of the people God has placed around us this year and hope to help as many as have helped us. We will praise God for all the gifts he’s shown to us along the way in this hardest year of our lives. We will thank him for two beautiful, happy, healthy children who we have the privilege of raising. Here’s to a much better 2017!

Today

I haven’t written in forever. ¬†Part of me just wants to grab hold of the life we’ve been given back and go with it as if the reason for this blog was never a part of our world. ¬†I never used to blog when life happened. ¬†It’s strange when you are constantly balancing on the line between a personal, private life and knowing people need to know details because they genuinely care and want to pray. ¬†I’m not going to lie though, each time I sit down to blog it serves as a therapy for me to stop the words from being trapped in my head swirling around and around. ¬†One thing that hasn’t changed since the very beginning is the fact that I have many, many more words than my husband.

Today was a hard day so blog therapy is a necessity. I got a ¬†phone call from Mason’s school while I was on the phone with the oncology team at KU. ¬†Both phone calls were bad news. ¬†We’ve had much worse news in the past, so I’m trying to keep it in perspective. ¬†But, today kind of kicked my butt.

dont-have-a-bad-day

I need to backtrack a little so that this all makes sense because it’s been so long since I updated. ¬†The pathology report finally came back from NYC, inconclusive but “favoring” Fibrous Dysplasia, meaning they believe Mason never had cancer. ¬†We have since learned that Low Grade Osteosarcoma and Fibrous Dysplasia look very similar in pathology and misdiagnosing one for the other is a ¬†very easy thing to do. ¬†In the end, we have two different opinions and our doctors at KU do not agree with our doctors at Memorial Sloan Kettering. ¬†Besides the fact that all of these surgeries and chemo would have been completely unnecessary if it was Fibrous Dysplasia (a whole can of worms that is emotionally hard to process), the treatment for these two diseases are drastically different. ¬†Because we have to know how to proceed and make the best decisions moving forward for Mason, we opted to move forward with seeking a third opinion over a month ago. ¬†We signed ¬†consent for Mason’s ¬†tumor slides to be sent to Mayo Clinic in Minnesota and have been waiting yet again.

Today’s phone call with oncology was a return phone call because I had finally decided to check in to see if there was any update at all. ¬†This phone call revealed that not only does Mayo not have Mason’s slides over a month later, but they are still sitting in NYC. ¬†Our nurse practitioner vowed to call them every single day until they mail the slides back so that they can then turn around and send them back out again. ¬†While I’m grateful for the diligence, it should have happened a month ago. ¬†So, we wait longer and become more frustrated. ¬†While I had them on the phone I decided to ask about vaccinations for Mason because he’s overdue on one that couldn’t be introduced during chemo. ¬†I found out that every single vaccination Mason has ever gotten since BIRTH is void. ¬†The chemo (which we now know was unnecessary) killed all of it making him no longer immune. ¬†Once he is 6 months off of chemo, he gets to start all over with every single shot he’s had in 10 years. ¬†Again, there has been much worse news and I hate that I am complaining and so frustrated by this. ¬†But, he’s been through SO MUCH already!

I hung up with oncology to answer a phone call from Mason’s school. ¬†He fell at school again today. ¬†He was loudly crying in the background. ¬†My heart skipped a beat and all I could say was, “Oh. ¬†Shit. ¬†Oh. ¬†Shit.” ¬†So mature, right? ¬†I may never handle emergencies with grace. ¬†I think each emergency now brings up all of the trauma from the previous emergencies and I see bits and pieces of the past as I’m trying to process. ¬†It’s ¬†a horrible state of mind.

Just recently Mason was released to full weight bearing. ¬†This meant that he didn’t¬†need crutches, but he should use them for balance until he got used to balancing without. ¬†It also meant that he was able to graduate to one crutch and just¬†yesterday, his physical therapist mentioned that a cane would actually be the perfect next step in helping him gain a normal walking pattern. ¬†I put out a plea on Facebook just¬†yesterday asking if anyone had a cane we could borrow – temporarily. ¬†And do you know that so many people came through? ¬†One of Mason’s friends brought a cane to school today and a ¬†friend of ¬†mine just so happens to have a father who is so talented and giving that he carves creations to be used as canes and gifts them to people who need them. ¬†I didn’t even know that a cane could be a piece of themed art like a birthday cake, but so much more useful! ¬†And, again I was reminded of God placing people around us that happily help in times of need.

But,¬†today¬†he fell. ¬†Today¬†Matt and I rushed Mason to KU yet again for X-rays praying it would be nothing even though he cried off and on all the way there. ¬†Today Mason fractured his tibia near his ankle. ¬†Of all the bones he could fracture, his tibia. ¬†He barely has any tibia left, just a top and a bottom and he fractured it. ¬†So much for being ready for that cane. ¬†He is back to no weight bearing, ice, and elevation to prevent massive swelling. ¬†We are so careful. ¬†He is so careful. ¬†But, he’s also 10. ¬†And, he’s ¬†also related to his parents. ¬†We do everything we can to prevent setbacks like this and they still happen. ¬†It sounds silly, but when I close my eyes and picture him running in my head, I always cry. ¬†I miss it that much and I’m just his mom. ¬† I can’t even imagine how much he misses it.

All of this being said, it could be so much worse. ¬†I was connected with another cancer parent last week and it was just heart-breaking. ¬†This dad has a daughter who has the same diagnosis (osteosarcoma -diagnosis #1) as Mason. ¬†She is being treated in the same hospital by the same doctors and yet her story is very different. ¬†Her cancer keeps spreading throughout her body and they recently found out it is now in her spinal cord. ¬†She is 14 and has been living in a hospital most of her time for over a year. ¬†The pain and sorrow in this man’s voice was so heavy and the love he has for his daughter is so deep. ¬†And he’s starting to believe he should hope that God will take his little girl so that she doesn’t have to suffer. ¬†I cried with this man over the phone and I ended the conversation feeling so very grateful for what I thought was a difficult journey we have been on. ¬†I was reminded how lucky we are and how hard it would be if we were still taking turns living in a hospital. ¬†I sat down today and composed an email to this man giving him every single resource I’ve learned about along the way and vowed to pray for his family as they make difficult decisions with cancer parent brains that make it very hard to focus. ¬†Please join me in praying for this family too, my reminder to be grateful. ¬†Someone else’s¬†today¬†can always be harder than yours.

In the Dark

It’s almost impossible to type an update when you feel so in the dark. ¬†We still know nothing. ¬†Even what we thought we knew for sure for months, we no longer know. ¬†It’s a hard moment to live in. ¬†If it wasn’t for the fact that we are basically living a normal life again, I think I’d be going crazy. ¬†Not knowing any answers + living in a hospital would be far too much. ¬†We still lead a life full of many medical appointments, but we get to go to work and school and sleep in our own beds at night. ¬†Physical therapy and various other appointments have taken over our schedule in the way that baseball used to. ¬†Thanks to my friend Missy, who cares and worries for my family and spends too much¬†time brainstorming ways to help Mason get better, we now are able to get Mason physical therapy 4 days per week. ¬†Missy ¬†gave me some great ideas of local places that could help Mason and encouraged me to check into them knowing our struggle is that our 9-year-old misses acting like a kid. ¬†He would give anything to run right now and be on the baseball field or basketball court. After numerous phone calls, I finally feel like we are on the fast track to getting him more help to get better faster. ¬†Pray for self-motivation for Mason when it comes to physical therapy. ¬†He’s been through so much, that sometimes he just feels tired of the fight and wants to give up. ¬†Pray that we can positively, yet firmly encourage him.

This coming Monday, the 12th, will be 4 full weeks since we sat in Dr. Meyers’ office in New York. ¬†That day we agreed to doing the genomic profiling to extract Mason’s DNA and find genetic mutations that would lead to answers on what we are really dealing with. ¬†We were told that day that Dr. Meyers’ pathologist would have some kind of information for us by the end of the week, but that we shouldn’t expect any definitive results on the genomic profiling for 3-4 weeks. ¬†On the morning of August 29th, 2 full weeks after the appointment and 10 full days after we were promised a phone call, I finally called Dr. Meyers. ¬†That phone call rocked my world completely. ¬†I lost it. ¬†I cried for about a week and I even questioned God. While I learned nothing definitive from that phone call, what I did find out made me question our entire journey and every single decision we’ve made. ¬†I am in tears as I type this and I’m not even sure how to explain to you how confused, betrayed, and defeated I feel. ¬†Dr. Meyers apologized for not calling sooner and he said the reason he hadn’t is because he didn’t have any real information for us yet. ¬†He went on to say that in all of the years that he’s worked with his pathologist, he’s never seen her quite so conflicted. ¬†So conflicted that she is not willing to label any diagnosis until she has the genomic profiling back to fill in the missing puzzle pieces. ¬†I asked him what he meant by conflicted – between two¬†things or conflicted in general? ¬†He said just two. ¬†I told him I had to know what those two things are. ¬†I had to know what we might be dealing with. ¬†He said low grade osteosarcoma (same diagnosis as we were given back in January and have been treating all along) or….fibrous dysplasia (what Dr. Rosenthal was 99.9% sure we were dealing with prior to December’s open biopsy -NON MALIGNANT). ¬†I can’t possibly put into words why this upsets me so. ¬†I can’t even wrap my own head around it. ¬†If you would have told me that they would come back with two possibilities and one was NOT EVEN CANCER, I would have told you I would be elated. ¬†I assumed all this time that if it wasn’t osteosarcoma, it had to be something even worse. ¬†But, here’s the deal. ¬†If it has been fibrous dysplasia all along, then we have consented to methodically poisoning his body as well as mutilating it through horrific surgeries repeatedly. ¬†The list of effects he will have for the rest of his life from all that we’ve done to him is far too long and honestly heart-breaking. ¬†I immediately thought of all of those times when I had to sign papers for him to be admitted into the hospital and all of those times when Mason would plead with me telling me if I didn’t sign, we could just go. ¬†We used to dream about the places we could go instead of the hospital. ¬†The guilt I feel for my role in this will never ever go away. ¬†I was given this child to protect and yet I put him in danger. ¬†He was a perfectly healthy child up until that day he got cut in Kentucky. ¬†And then there’s that. ¬†We could easily call that first cut a miracle and give the glory to God for showing us he had these tumors inside his body that were trying to kill him. ¬†It feels so different now. ¬†It feels like we wish we had never found the tumors and we could possibly still be in the dark – ignorant and blissful. ¬†I just don’t know what to think. ¬†I do question why God would have us go through this. ¬†I worry more than I pray. ¬†But, I also know that God is good through it all. ¬†It’s just harder for me to piece together now because I thought I had it figured out. ¬†But, I am reminded that if I could figure out God’s plan in this, He wouldn’t be a very mighty God and I am grateful that He is.

So, to answer the questions that are piling up…nothing. ¬†I know nothing. ¬†I don’t even know what I thought I knew. ¬†We may have had an entire event called a CANCER SMASH when we weren’t even fighting cancer. ¬†It feels yucky and deceiving and terrifying all at once. ¬†And, I still stink at waiting no matter how much longer I wait. ¬†It never gets easier. ¬†We’ve tried to balance out the bad with some good, because you can only live in the bad for so long without it really getting you down. ¬†A friend showed up on our doorstep with Royal’s tickets in hand and we got to go to our very first game this season. ¬†It was impossible to take for granted how good it felt being at Kauffman stadium after watching so many games in our hospital room. ¬†We took it all in, the sounds, the smells, the happy people and expensive food that somehow tastes so good there. ¬†We were reminded that it is one of our happy places and so grateful for the opportunity to be there even though they totally lost. ¬†We also adopted a new dog. ¬†We wanted a dog who loved people and would be a good lap dog for all of the time that Mason has to sit. ¬†We totally found exactly that dog. ¬†Louie loves us so well. ¬†He has brought a lot of excitement into our world….good and bad. ¬†We fight over him and he loves us all equally. ¬†Jazz is perplexed by him and how much he enjoys us. ¬†She thinks we’re all crazy.

Pray for solid answers that everyone can agree upon.  Pray that Louie can learn to sleep in his own bed without being destructive trying to get to his people.  Pray for speedy recovery for Mason and daily progress with physical therapy. #PrayforMason

Top 10 From NYC

imageTop 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 √ľber 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.