We Enter the Unknown

How’s this for destined fate? I work in a pregnancy center. It’s an amazing Christian ministry. When I say amazing, I mean The Holy Spirit is evident within those walls each and every day. I mean I will truly never forget the first time I walked into this tiny brick building and physically felt God ushering me in amongst the goodness of His love and grace that abounds there. Young girls and middle-aged women and everyone in between walk through our doors. Most are hurting and feeling hopeless. Many are seeking an abortion and hoping to leave our clinic having taken care of the “inconvenience” they’ve found growing inside of them. But this is not what we do. Instead, we pray. We pray fervently that God will orchestrate whatever needed to get these girls through our doors, especially the girls who want to kill their babies. We pray that when our mouths open to speak to our clients (and their boyfriends, husbands, moms, dads, and friends), The Holy Spirit gives us words that flow out and meet them exactly where they are. We pray that when we show them kindness, love, and grace that they realize there is something different about us. We pray that our words and actions constantly bring glory to God. We pray that when these mothers see their baby’s heartbeat for the very first time, they instantly fall in love with the miracle growing inside them. We pray that they understand that God has created this tiny human being for a divine purpose and that our God never makes mistakes. This is what we do each day. We work through the awkward spaces of begging girls to love their babies enough to parent them or let someone else parent them.

As a momma who has wanted to be a momma my entire life, I’m angry. I find myself pleading with God to spare my baby. Knowing how easily others give up their babies and being reminded of it each day is hard. I’m terrified.

Each phone call or doctor appointment tends to be worse news than the one before. Our heads are spinning attempting to understand what we are hearing. Monday’s MRI revealed there is for sure a 2nd tumor. The cells in this tumor appear to be the same as the 1st tumor, which was diagnosed as a low grade intramedullary well-differentiated osteosarcoma. The problem now is that this just doesn’t happen. There are no known cases of someone with this diagnosis having a 2nd spot in another bone. There are cases of this showing up again in the same bone or the lungs. This has confused the growing team of doctors working on his case. This may mean that the original diagnosis was false. All new information is being sent to the leading osteosarcoma pathologist in the country (the same one who made the original diagnosis). Dr. Rosenthal was honest enough to let us know how perplexed he is in all of this. He seemed excited to tackle this and figure out the best treatment. We are not sure whether to be happy that Mason’s case seems to be beyond rare and prioritized or to be devastated that there is so much in question.

Chemotherapy is still on the table as are multiple surgeries. It was even brought up today that he may need a prosthetic hip joint that would grow with him. Can you even imagine how much that would cost?

Mason is still so positive. He continues to giggle and make us all laugh. He has started asking a few more questions, but quickly moves on to his normal life. He wants nothing more than to feel normal. The cast finally came off today and he got to wear both shoes for the first time in almost 7 weeks. He is still on crutches and can very gradually begin bearing weight. This is bittersweet because today was supposed to be somewhat of an end to this journey in the original plan. But, we continue to trust that God has big plans for our strong boy.

The next steps that we know for sure are:

Monday – Meet the vascular surgeon and have arteriogram done.
Thursday – PET scans to scan all soft tissue in his body for the appearance of cancer.

Please continue to pray for wisdom, strength, patience and healing. Pray for miracles.

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Crappy Day

I don’t want to type this. I want nothing more than to be able to give a positive update. I’m so very sad. The bone scan from Friday shows another “hot spot”. We’re told there’s a 50/50 chance that it is more cancer.  This time it is in the same (right) leg, but at the very top of his femur near his pelvis. Again, he has no pain there.  Again, we are on the rare path. We go back to Children’s Mercy for another MRI tomorrow and then return to KU on Thursday to learn results and course of treatment as well as have the cast removed.  If the MRI is inconclusive, like before, we will have to do another surgery to biopsy this area – so possibly two surgeries at once. If this 2nd spot is cancer, Mason will have to do chemotherapy as well as surgeries.

To top off the day, on our way home from the hospital, we found out that Alli got a concussion at school. Because we don’t get any cell service on this KU campus, we didn’t even know. We are grateful for friends who take care of our kids when we can’t, friends who leave supper on our doorstep knowing we need it but don’t want to talk, and friends who bring by groceries knowing we are out of almost everything. All of this happened just today. God is definitely showing up through His people. We will also be grateful to never have another day as crappy as this one. It’s not even 6 pm and I need it to be over.  Please gather your prayer warriors for us.

We Wait

Today felt like the longest day ever. From 10:30 am to 3:45 pm, we shuffled through the radiology department of KU. We did get to leave for about an hour for lunch. We had only been in the waiting room for about 10 minutes this morning before we started hearing other patients sharing their cancer stories and crying. There were wheelchairs and canes and lots of slow moving older people, but no other kids. Thank God.  We are not at all ready to join this crowd in the waiting room. We don’t want to be on a first name basis with the nurses and techs like many of them clearly are.  We focused on each other as much as we could. We probably should have had conversations, but not today.

Today was harder for Mason than what we were prepared for. They had to start an IV to inject the contrast for the bone scan. The nurse tried and failed twice before being kind enough to find someone who could get it in. Her words after failure #2 were, “Dang, I blew that one too!”  Thankfully, the second nurse got it in on her first try, but this time blood immediately gushed out all over him. Thankfully, he was wearing all black so he didn’t have to spend the entire day appearing to be covered in blood. Thank you, Fleners and #myetchedlife for the perfect shirt for a day like this. Mason wore it proudly.

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Because the injection was over an hour later than it was scheduled, everything else was set back over an hour. Just when I think I’m becoming more patient, the waiting increases it seems.  The scans are all complete for now and again we wait. Monday afternoon we meet with the pediatric oncologist for the first time and we assume that we will find out the results of today’s scans.

Because we are crazy and obviously don’t have enough going on right now, we decided to list our house today. I know, it seems crazy and sudden. But we’ve actually had our house ready to list since September. We’ve been looking for that perfect ranch ever since, scouring real estate apps and waiting expectantly for each email our realtor sends us with a new listing. Looking at houses has become our getaway from reality lately. When we’re sad, we message our realtor and she schedules an appointment for a showing. The kids love it. We love it. And, let’s be honest, it beats most coping alternatives!  Last night we found that perfect (within our price range anyway) house!  At midnight last night we were filling out seller disclosures and cleaning the house. By 9 am, we already had our first showing. By 10 am, we were fairly certain we would get an offer today. By 5:30, we were signing papers. In 1 day, we’ve accepted an offer and made an offer. It has helped us all find some happy in the sadness. And, it has definitely been a great distraction. If all goes well, Mason will no longer have to crutch up and down the stairs to get to his bedroom. Considering that we have another 7 months on crutches, that feels like a big win. And, we will no longer have an unfinished basement that maybe someday we’ll be able to finish.  For now, we wait. We love waiting.

Bottle of Tears

The last two days have only been one Kleenex kind of days!  This is a huge praise considering the days I was having.

Mason:  Are you crying again?

Me:  No

Mason:  I know you’re crying.

I’ve cried so much, my tear ducts might be empty at this point.  I’ve thought of Psalm 56:8 from a fresh perspective.  I’m guessing God needed a bigger bottle after this week.  I’ll never forget driving on 291 where it crosses over I-35 and crying so hard that I could barely see to drive.  I felt so heavy with pain that I visualized the bridge collapsing as I drove over it.  I didn’t even feel it coming on and there was no way I could stop.  It was the kind of crying that uses your entire body and the wails come from deep inside you.  I can still hear how it sounded.  Excruciating.  I realized in that moment that I hadn’t felt that way since my grandpa passed away unexpectedly back in 2001.  I was grieving.  It feels silly to grieve someone who isn’t gone.

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We know that God’s Word is true and His promises are always kept.

His love for us indescribable.

Right now, I am focusing on taking it one day at a time and each day this new truth is sinking in a little bit more.  I feel like a have a track playing in the background at all times.  My son has cancer.  My family is fighting cancer.  It’s what I think of first thing each morning as I wake up.  It’s where my mind goes when I can’t focus.  It’s always there.  But, I try not to linger there when I’m overcome with these words, but to pray in it’s place.  Sometimes the prayer sounds more like pleading with God and other times I’m able to to be truly grateful.  I know God has something for us in this and I don’t want to miss it.

Next Steps:

Friday, January 22:  Radiology visit – Chest CT and Full Body Bone Scan

Our biggest prayer request right now is for the cancer to be isolated in his leg only and not have metastasized elsewhere.  Please pray!!!

Monday, January 25:  Meet new Pediatric Oncologist and find out results of Friday’s scans.

Thursday, January 28:  Remove cast #1 and hopefully schedule a date for surgery #2.  Mason will still be on crutches, but will hopefully have at least a week of being cast free and able to take a bath.

We are still waiting to schedule the appointment with the vascular surgeon.

P.S.  I’m not quite so explosive these days.  I made it through church on Sunday quite well and our family felt surrounded by love and prayers.  A friend stepped up and offered to set up a prayer calendar for Mason and our family as well as a meal sign-up for those who want to help in that way.  She didn’t ask me any hard questions and told me I needed to just say yes.  It was breath of fresh air.  I sit with Mason each night and we look at all of the people who have committed to praying for us throughout the day.  I can’t tell you how much goodness there is in reading the names and knowing they are going before God on our behalf.  It puts a big smile on Mason’s face.  We are so grateful for everything!

If you’d like the link to either of these, please send an email to juliemabrey@gmail.com .

 

 

 

No thank you, Doc.

Monday, January 11th at 5:28 pm our world changed.

Matt and I were both in the kitchen.  We were working together to get supper on the table.  I had picked Alli and her carpool of friends up from school musical practice and texted Matt the new Pinterest recipe we were going to try that night.  Mason was in his usual spot, the recliner.  Ever since his surgery mid-December to remove the tumor we were told was highly likely not malignant, the recliner is his spot.  He was telling us how hungry he was and we were assuring him it would only be a few more minutes and supper would be ready.  I was feeling pretty proud of us.  My husband took the hint that, “This is what we’re having for supper.” meant he could go ahead and get it started.  Even though it had been a full Monday, we were going to be sitting down at the table by 5:40.  Success!  As Matt put the chicken dish in the oven, I sat down to go through the mail before we ate.  The first of the surgery bills had come and I was calculating the totals to see where we stood.  It’s a crazy thought I know – Matt at the oven and me with the bills.

My phone rang in the middle of my calculations.  I was annoyed because it said No Caller ID on the screen.  I knew it must be someone trying to sell me something.  It was Dr. Rosenthal.  I’d had my phone as near to me as possible for the past 27 days waiting on the results of Mason’s biopsy.  But, no way did I think I’d get this call in the evening.  I was off-guard and quickly motioned for Matt to run with me downstairs.  We knew if we got this call when the kids were around we didn’t want them to have to hear it.  We also knew that the chances of this call going poorly were about 1%.

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I remember the doctor saying something like, “I really can’t believe that I am telling you this, but there is a malignancy.  This is so rare.  I just can’t believe it.  Only like 25-50 people in the United States have this type of osteosarcoma…”  The entire time he was talking, I had fixated on a picture of Alli holding Mason when he was 2 years old.  It was on a coaster that was sitting on the desk in front of me.  His bright, blue eyes and big smile were protecting me from the words I was hearing.  I can only describe that entire 28 minute phone conversation as an out of body experience.  I heard the word malignancy and I faded out of the conversation and into the background.  Matt managed to answer a couple of questions when I had no words or was sobbing.  I remember him ending the call telling us that he really didn’t even know yet what our best course of treatment was, but that as soon as he had had time to decide, his nurse would call us and we would need to meet with him to devise a plan.  Heartbreak.  Devastation.  Shock.  So many questions swirled in my head and I just cried.

Matt:  “How are we going to tell the kids?”

Me:  “How do I even get up those stairs?”

Matt:  “Supper is ready.  I should probably get it out before it burns.”

Me:  Audible crying

Matt: “Are you ready to eat?”

Me: “Can we at least pray together first?”

We have learned a lot about each other in the last few days.  We’ve been together for almost 16 years and we still don’t quite get each other.  Matt’s way of coping in a bad situation is to continue through the steps of his day like a checklist.  As long as he stays busy, he doesn’t have to feel emotions.  Emotions for me are not a choice.  And, when I see that he appears to not show emotions, it hurts me.  I don’t want the world to continue.  I need everything to pause until this devastation is over.  I actually got angry at work the other day when I overheard people laughing.  Oh my.  Forgive my selfishness, Lord.

I managed to make my way up the stairs.  Our wonderful supper made it to the table.  I pulled myself together momentarily.  I couldn’t maintain it.  We prayed over our meal and then I started talking.  “That was Dr. Rosenthal.  The tumor was not what they thought.  It really is cancer…”  So many tears filled our home.  Mason bent over as far as he could without falling out of his chair and yelled and cried and hit things.  Alli couldn’t possibly cry any louder.  We all huddled together around Mason’s chair and cried.  This went on for maybe 7 minutes.  Then, Mason sat up.  The words he spoke next were wise beyond his years.  He said, “We might as well stop crying and just be positive.  We just have to trust God.”  A few minutes later, Alli was still crying uncontrollably.  Mason stood up, left his crutches, and hopped from his end of the table to hers.  He leaned over and wrapped his arms around her and told her to stop crying because it was going to be okay.  He put some salad on her plate and asked her to eat.  We each ate a handful of bites and then got up and put almost the entire meal in the refrigerator.

If only it had been a telemarketer like I thought.  “No thank you.  We’re not interested.”

No thank you, Doc.  You must have the wrong number.

 

 

 

 

 

 

 

Yes, thank you…or not.

I’m not a writer.  I’m definitely not one who shares my feelings to the masses.  And, yet I’m here staring at the blank page of this brand new blog.  This is not what I wanted and yet I feel freedom in the movement of my fingers.  The number of questions I’ve been asked in the past 5 days is overwhelming at best.  I’m grateful and burdened at the same time.  I am an introvert and while I can share easily with my close friends, the thought of being in public right now and being bombarded with the same questions repeatedly makes me so very anxious.  I know that sounds completely heartless and unkind.  Please don’t read it that way.  I absolutely love my church and my church family and yet I find myself terrified to walk in the doors tomorrow.  It’s not at all that I don’t want people to know exactly what is going on so they can specifically pray us through this.  It’s just so out of my comfort zone and honestly exhausting repeating myself so many times…not to mention that I will run the gamut of emotions each time I talk to you.  I’ll cry ugly tears or laugh really loud when something funny is said just because I miss laughing and all of the sudden it feels so good.  Or, maybe I will stare blankly when you talk because I lose focus so easily these days.  I really should wear a caution sign that says, “Speak at your own risk – highly explosive!”  It’s not the me that I want to be, just so you understand.  I want to be the mother and wife who has it all together and graciously thanks each and every one of you for your interest and kind words.  I want to go about my days as I would have before.  But, right now I can’t.  I feel paralyzed, devastated, and overwhelmingly sad.

In the first couple of days the number of “What can I do’s” was impressive.  So many people care.  I felt like the least I could do was to answer each text, email, Facebook message, etc.  The problem was I had no idea how to answer one single question, much less all of them.  I wasn’t even sure how I would make it to the next hour because sadness had taken over.  Those open-ended questions became work for me in that moment.  I had to think.  I had to make decisions.  I didn’t even know how I would pull myself off the couch when it was time for bed, much less what someone could do for me.  I pulled it together for a brief moment as the messages were rolling in.  Someone graciously offered to snow blow our driveway this winter if we ever have the need.  It was like a light bulb went off in my head and I thought, okay, I can do this.  If someone offers something, I can just say, “Yes, thank you.”  How hard can that be?  So, I sat there for a few more minutes feeling really good about my decision.  People want to help.  I probably need them to help.  I can’t answer the open-ended questions, but I can totally say yes to offers of support.  This is good.  Then, boom!  Less than 5 minutes later, someone offered their bone marrow.  My head spun.  All I knew is that we are definitely facing cancer.  That’s it.  I didn’t know if we would need bone marrow, but I sure as heck knew that my plan of survival was completely foiled.  I can’t say, “Yes, thank you.” to bone marrow.  As the days went on, there were words coming at me right and left – I’m thinking of you, praying for you, more what can I do’s, I’m sending good vibes your way (my favorite non-believer phrase), and I’m even getting cancer articles to read about vitamin therapy and essential oils’ healing powers.  You guys!!  I love your hearts and I love you.  I know that absolutely 100% of the words that have come my way are pure and honest love and support.  It’s just a lot.  So much.  And, I’ve found myself on this journey I never wanted to be on.  I cling to God’s word like never before.

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When I was a kid still living at home, my mom, an RN, used to have an interest in stories of moms who had Munchausen by proxy.  We would sit and watch 20/20 and Dateline specials on this insane disorder.  And, we would cry together for these kids and shake our heads wondering how these parents could feed off of making their children sick to gain attention.  And, yet, we knew that it was a real disorder that they struggled with and needed help for.  I always knew I wanted to be a mommy.  I’m pretty sure I got my first doll before I was old enough to walk and anytime someone asked me what I wanted to be when I grew up, it was always “a mommy.”  I may have had cabbage patch dolls in my room through my sophomore year of high school and I may still remember their names.  Within the first week of meeting Matt, I asked him if he loved God and wanted to be a dad.  Check.  Check.  Time to get married.  But, never in any of my plans or playing house, did my baby get cancer.  I don’t know how to do this.  I don’t want to do this.  And, I definitely do not have what those Munchausen moms had.  I do not need the attention that a sick child brings.  I don’t want a team of doctors working on my child.  I don’t want to ride this emotional roller coaster.  I don’t want any of it.  And, yet here I am.  This is my story.  And, this blog will serve as my free therapy.

The best kind of cancer to have…did I just say that?

For those of you who want to know how our appointment went on Wednesday but don’t have Facebook, here is what I posted.

We had an appointment with Mason’s doctor today. While we still don’t have an exact treatment plan, we do have a lot of questions answered. As my wise friend, Amanda Seymour Johnston says, “If you have to have bone cancer, this is the kind to have!” Amanda actually went along to be another set of ears for us and ask all of the questions we wouldn’t know to ask. Considering the fog I’ve found myself in, I’m so grateful. Here’s what we know:

•This type of cancer only metastasizes to the lungs and rarely does.

•No chemotherapy or radiology should be needed!

•The best guess is that the tumor has been in his leg for over a year. If he hadn’t gotten cut over the summer, we wouldn’t have known until he started having pain. At that point, it likely wouldn’t be grade one. Thank you, God, for that interruption.

•Over 90% of patients are completely cured after resection surgery.

•Fibulas are not even necessary bones! They only bear 1/6 of your weight as you walk.

•Surgery #2 will be on the main KU campus in early February and will take the fibula from either his good leg or bad leg to replace the 10 cm section of tibia they remove. Recovery will be a full 6 months and the hospital stay will be longer than last time (3-4 days).

•Toward the end of recovery, PT will be necessary. Follow-up will consist of a CT scan of his chest and plane x-Ray every 4-6 months for 5 years. In years 6-10, he will only go annually. Then, (when he’s 19) he may be able to discontinue follow-up.

•Before surgery, Mason has to visit two new doctors. 1) a vascular orthopedic surgeon, Dr. Tilley, who will be a part of the operating team along with our current doctor, Dr. Rosenthal (orthopedic surgical oncologist) 2) a pediatric oncologist, Dr. Smith. He also has to complete a full body bone scan and chest CT to be certain we are only dealing with one tumor.

•By fall, he should be able to resume all activities and will have grown a whole new healthy bone (plus several screws and plates).

Many of you have asked how Mason is handling this news. I’m proud and embarrassed at the same time to say that he is handling it better than any of the rest of us. He has continued to amaze us with his positive attitude and pure trust in God. He has been able to witness at school through this situation and we have been reminded repeatedly how lucky we are to be his parents.

Again, we are so grateful for your prayers, texts, hugs, phone calls, offers of help, etc. I can honestly say that I’ve never been so scared and sad in my life than I have this last couple of days. While we still have a lengthy journey ahead of us and we are not “out of the woods yet” so to speak, we feel very encouraged by today’s conversation. Please continue to pray and be sure to let us know when you win the lottery tonight. We could use a small percentage of your winnings to pay for this all-star team of doctors!

A big thank you to Lisa Kroge, Mayela Aldrete Esser, and Tammy Burrowfor getting us through today. Both of our co-workers and employers have been very accommodating and in constant prayer with us as well. Without a doubt, God planted us among countless servants and friends. Without you all, I can’t imagine going through this. I apologize to those who got the pleasure of having my snot and tears on their shoulders as well as those who sat and listened to my ugly cry over the phone this week. I hope to never have to repay you, but if necessary, I’m totally up to the task.