Blessings but no Answers

Life has been a little too interesting since I last wrote.  Everyday I find myself thinking this ride can’t get any rougher, but it does.  Friday we were told to wait until Wednesday (today) for answers.  Instead of focusing on the waiting as is so easy to do, we tried to make the most of our chemo-free weekend and hold onto the hope of the possibility of no chemo.  Mason had a friend over and played outside like a typical 9-year-old (minus the running), Alli and I got to spend some time on a mommy/daughter date with good friends, and we even got to do a family photo shoot!  We were blessed by a friend who does photography with a free photo session and we giggled our way through most of it.  We (mostly me) are super awkward in posing which becomes pretty hilarious.  The weather was simply perfect and we felt like that was a true gift from God.  Instead of chemotherapy in a hospital as planned, we got to be outside enjoying each other in 75-degree weather in February.  We’ve learned to be grateful for moments as they happen.  Saturday is etched in my memory as a wonderful, happy day.  And, I even have photographic mementos.

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I can’t tell you how happy ^^^ makes me!  The kids posed themselves here and they really love each other.  We have actual proof!  And, those grey stripes?  Not me.  I almost didn’t even let that happen because of my need to micromanage.  We were kind of pressed for last minute outfit decisions and I asked each of them to go pick out something they would like to wear.  They BOTH picked out grey stripes!  And, it actually works…I think.  Fashion is not my thing, unfortunately.

Saturday night as I was flushing Mason’s catheter getting him ready for his shower, he started complaining of his chest hurting when I touched it.  I was just getting to the point where I was feeling pretty confident in my abilities to flush both tubes and get his dressing waterproof and now this!  I didn’t think much about it as we’d had a HUGE day and I knew he was mostly exhausted.  I figured a good sleep would fix everything.  But, I was wrong.  By Sunday morning, he was in pain even when his chest wasn’t being touched.  We ended up heading to the ER instead of church.  KU emergency room on a Sunday.  Oh my.  That could be an entire blog in itself.  We spent a full 5 miserable hours there and were sent home with an antibiotic.  That night Mason spiked a fever and only appeared to be getting worse.  By Monday morning, the dressing that had just been changed in the ER was full of green/brown drainage.  To be fair, none of this was happening when we were in the ER, or they would have treated him completely differently.  But, we ended up with a wasted, painful Sunday and made no progress in getting him better.  By Monday at noon, he had been admitted and his fever continued to creep higher and higher.  After 4 hours of every specialist in every department weighing in on his treatment, they finally pulled his catheter out.  Just like that, no medicine or anything.  This line that they had just surgically placed 10 days earlier was ripped out.  He screamed through the entire thing because he was so sore already.  This was excruciating to watch .  Matt and I felt so helpless.  All of Monday and through the night, his fever never once broke.  Mason didn’t look or act like himself.  I had kind of prepared myself for days like this once chemo starts, but I wasn’t prepared for it at this point.

By Tuesday morning, he no longer had a fever and had started being the funny, sweet boy I missed.  We were lucky to have the same day nurse, Cathy, both Monday and Tuesday and she worked so hard to get Mason better with as little pain as possible.  The two of them really hit it off and the banter between them was hilarious.  Mason had us laughing so hard and was clearly a different boy than the one Cathy had first met.  Tuesday was filled with more visitors than our tiny hospital room could hold.  We had lunch and drinks delivered to us as well as the best home-cooked dinner.  We were blessed with groceries delivered at home and friends and family helping out with Alli and Jazz.  And, to top all of it off, we got a delivery from Mason’s school via his amazing guidance counselor.  A family at his school (whom we’ve never even met) gave him their Xbox 360 and several games as well as several gift cards in a nice little personalized bag perfect for carrying the Xbox back and forth to the hospital.  When I sit and think about the number of people that blessed us in one way or another just in this one day alone, I’m beyond humbled.  God is raising up an army around us.  We feel so loved, prayed for, and supported.  From dear friends and family to acquaintances, to people we don’t even know – we are blown away.

Today was a good day and a hard day all at once.  We were lucky enough to get our favorite nurse for one last day but we got absolutely NO NEWS.  None.  It is beyond hard to have these deadlines pass and get nothing.  Our not-so-favorite-always-makes-us-wait pathologist in Florida has still not offered his valuable opinion.  I want to scream and throw things and I’ve decided every hospital needs a room for this.  It needs to be sound proof and filled with expensive glass items that make a beautiful noise when they shatter.  It needs to just be labeled as a restroom so that your loved ones don’t realize what you’re doing.  This is what I needed today.  Waiting definitely hasn’t gotten easier for me.  Distractions are the best fix.  But, even though I’m a big mess, I was still able to laugh out loud all day long.  Mason has been something else.  He has just plain been hilarious.  He doesn’t appear to be one bit worried about what the future holds.

Here are a few moments that have made me smile.

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This was the first meal Mason chose when he finally felt like eating after a day and a half of no food – pepperoni pizza with a side of cold pepperoni and some strawberry jello.  This is a balanced meal, right?

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So much about this picture makes me smile.  Left to right:  Mason’s favorite Sonic drink – Grape Sprite, his trusted wookie, “Chewwie”, who has been through so many procedures by Mason’s side, that Xbox remote that provided a wonderful distraction from his pain and gave him something to do with his dad when he visited, and that tired man in that chair who worked all day and couldn’t wait to come hang out with his boy

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This face!  This is his “Of course I’m cool enough that my nurse would make a trip to the store just to bring me pepperoni for breakfast” face.

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Nurse Cathy.  Mason’s newest friend.  There are just no words for the way these two hit it off.  I can’t tell you how much respect and gratitude I have for her and others like her who give so much of themselves each day to care for others.  She was AWESOME!  Mason wanted me to get her phone number.  😉

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Throughout our past 3 days in the hospital, Mason has been called a handful of different names.  During rounds Tuesday morning (which, by the way, are JUST LIKE GREY’S ANATOMY!!!), Mason somehow became Nathan from Lees Summit.  He was also called Ryan at one point.  This morning, as he was creating his new Xbox account, he was named ScrewyFoil.  He now answers to any of the above and laughs hysterically at all of them.

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This just made me smile. Mason’s been called all of these different names since we’ve been here, and I’m just MOM.  I’m good with that.

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This is what Cathy wrote on the door to his room.  Everyone knew it was a joke except for the lady who came around to do a craft project with Mason.  She was grateful that his name and city were on the door so she could get to know him better.  The poor lady is still confused I think.

Before our favorite nurse left for the day, she got us sprung from our tiny room to one of the nice, big rooms that actually have room to move around and a refrigerator.  It sure does make a big difference when your walls aren’t quite so close together.  I’ve enjoyed this time with Mason tremendously, but I’m beyond ready to get home to my bed where I can actually sleep without being constantly interrupted by beeping machines or painful screaming.  And, I can’t tell you how much I miss Matt and Alli.  We have hope that we’ll be able to go home tomorrow if all goes well.  We have no hope that we’ll ever get any answers.  Still praying for that miracle and trying to remember to be grateful for the little gifts along the way.

More Confusion, More Waiting

I just got off the phone with Dr. Smith, Mason’s oncologist. This is the fourth conversation I have had with Dr. Smith in the past 24 hours.  The 3 previous conversations have basically told us nothing – “just checking in to let you know that I still haven’t heard and am waiting and anxious just like you” kind of conversations.  This morning when he called, Dr. Smith had just ended a half-hour phone conversation with Dr. Rosenberg, the pathologist in Miami that we’ve been waiting on.

I can’t possibly describe to you the confusion that I feel after these conversations. I try to read between the lines and get a feel for what the doctors are not saying that I should be hearing. I feel like Dr. Smith was pleased by what he was telling me. But, I also feel like everyone involved is more perplexed than ever.

Here is what I heard in our brief conversation:

  • Given the age of your son and knowing that the diagnosis of the areas in his femur will set chemo into action, as it should, Dr. Rosenberg wants to be 100% sure that what he is seeing requires chemo.  Chemo is never a decision made lightly. (Thank you, God.)
  • Dr.  Rosenberg wants to do the same type of testing on the femur samples that he did on the tibia.  This takes several days.  He hopes to be done by WEDNESDAY of next week. ?!?!?!?!?  (I want to scream!)
  • Dr. Rosenberg needs the actual film from the PET scan.  We’ll send it today and he should have it by Monday.  (No problem, really.  The PET scan was done OVER TWO WEEKS AGO!!!)
  • I’ll be in touch.  Have a good weekend.
  • Me:  “Wait!  Are you surprised by this?  Do you agree with waiting?  What about the part where you told me the tumors appear to be growing everyday?  Are you sure we should wait?!”
  • Again, this type of intramedullary tumor is not supposed to spread to another bone.  We are all alarmed by what we are seeing and want be completely sure that this is what it appears to be before we start chemo. (Thank you, I think.  The concern in your voice is killing me.  No one really knows what we are dealing with here.)

I’m confused, terrified, and a tiny bit excited by this.  This is the first conversation in a long time where it sounds like chemo may not be in our future.  I regret pushing so hard to do what I felt was best for Mason.  They wanted to wait to put his Hickman catheter in until this past Monday and start chemo on Tuesday.  That was the firm plan.  I don’t know how many times we discussed starting chemo at 9 am on Tuesday morning and here it is Friday and we are being told we won’t do anything until at least Wednesday.  I pushed because I was told that a 9-year-old going under anesthesia 3 times in a week’s time was not good.  I pushed because I hate seeing my baby go under.  I pushed because I really thought I was doing what was best to get both procedures done at once.  And now, I wish I hadn’t.  He wouldn’t have tubes coming out of his chest and I wouldn’t be pumping 4 syringes full into him each day .  And we wouldn’t be struggling through covering these tubes for daily showering since he’s allergic to everything that is made for covering them.  I hate regret.

And, I hate the worry in all of this.  We were just told that in 8 days time, the tumors in his femur appear to have gotten worse.  We were told that these are at least a grade 2 and that they are clearly metastasizing.  We were told that waiting would definitely result in the cancer moving into his lungs.  It feels like a ticking time bomb.  It feels like something we should be acting on, not waiting on.  We know at this point we either wait on the doctors that we trust or we try to take matters into our own  hands and go elsewhere.  We know that by doing so would likely result in even more waiting because they don’t know our son’s case and would have a lot of studying to do before making any decisions.  We do know that if our doctors don’t feel like they can get a handle on what they are dealing with, we have asked that they sooner, not later, send us on.  So, waiting is really our only option.

The good news is we now have a weekend that will not include a hospital.  And, even though it’s so windy we’ve literally lost our recycle bins and our house is shaking so much it feels like it’s going to blow over, the temps for the weekend are warm for February.  Because our move is about 30 days away, we should probably start packing.  Maybe that’ll keep us busy enough to not be paralyzed with worry.

Maybe, just maybe, God is working His miracle right now.  Maybe our future will not include a year of chemotherapy.  Maybe we will not have to learn what it is like to live part-time in a hospital.  Maybe we will not have to learn how to parent two precious children from two locations.  Pray for that.

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Waiting on God = Wisdom

We finally got a phone call tonight and yet we still know nothing.

Mason’s oncologist is still waiting just like we are and called to let us know that he hasn’t forgotten about us and is hopeful we’ll hear something soon.  Ugh.

But, anytime we get any of his doctors on the phone, we are sure to ask as many questions as we can possibly come up with to somehow better understand what we’re facing.  So, here’s what we know.

  • Malignant tumors are graded as either 1, 2, or 3.  The first tumor found in his tibia is a 1 (best).  The 3 tumors in his femur are at least a 2.  Most osteosarcomas are a 3 before they are found.
  • The PET scan done on February 4 appears to be worse than the MRI done on January 27.  These are obviously two different kinds of scans so it’s not a direct comparison.  But, the tumors have clearly grown in this period of eight days.  That’s terrifying and feels like a ticking time bomb.  News like this makes us want to start treatment right this minute.
  • Dr. Smith felt like there was about a 1 in 20 chance that the final path report we are waiting for will change the course of treatment already in place.  However, it should not delay getting started as they’ve planned ahead for 3 chemo options.
  • Dr. Smith seemed surprised that we hadn’t called him and apologized for not getting us called earlier in the day.  He asked us to call him tomorrow at noon for an update.  He’s waiting and hoping just like we are.  Each time we talk to him, we feel a sense of urgency in starting chemo.  That’s pretty terrifying.
  • Our new goal is to get information by tomorrow (Thursday) and start chemo on Friday.
  • Once Mason makes it through 2 full rounds of chemo (approximately 10 weeks depending on how he handles it), he’ll have his first resection surgery.

All of this information is really based on what Dr. Smith has seen in Mason’s scans so far.  We have no official final pathology report.  I’m hanging onto a miracle.  I have no doubt that God is capable.

So, tomorrow will be bonus day 3!  I’m pretty grateful to have had the extra time this week.  We’ve been able to catch up on laundry and mail and many of the things that have piled up.  I will call at noon tomorrow and be really surprised if any information is available.  And then I will wait for the next deadline.

A friend who’s walked in shoes similar to mine posted this quote on my Facebook page today:

“Waiting on God rather than jumping the gun by taking matters into your own hands, is the epitome of wisdom…” – from The Songs of Jesus by Tim Keller

I’m going to claim that for today.  Waiting was painfully hard.  I stared at my phone all day long.  I physically ached deep inside my chest because I wanted answers so badly.  But, I felt strongly that I should just wait.  And, now I am wise.  I mean, wiser. And I still ache for answers.

Crickets…

Nothing.  We’ve heard nothing.  The phone hasn’t rang and I don’t want to call and ask…because I don’t want to know what they have to say…and because I’m practicing patience.  Patience is hard, people!

Bonus “Normal” Day!

The past couple of days I have been reminded of why started this blog! It’s overwhelming how many people care and want to know how to pray for Mason and our family. We are so grateful. The past few days have been extremely busy as far as his care is concerned. One thing that remains consistent on the medical end of all of this is that each and every day brings new confusion and new decisions. We can’t possibly think that we have a solid plan down without it changing.

On Friday morning, we went in for the needle biopsy of the biggest of the three tumors in his upper femur. At one point we had just planned to be there for the day, then they changed it to an overnight stay, then they said we may have to wait to go home until Sunday. We ended up getting to leave Saturday around noon. Mason handled the biopsy so well that we were all amazed. They took 12 good samples and feel confident that they got enough that an open biopsy will not be necessary. He had no pain at all from this! Immediately following the biopsy, under the same anesthesia, they placed his double lumen Hickman catheter. This area is still tender and it’s so hard for us to see him with these tubes coming out of his chest. But, all has gone as well as can be expected. I’ve learned to do the daily flushing needed and Mason doesn’t complain. Our current battle is the fact that we’ve discovered Mason is allergic to tegaderm. This is what would normally be used in the catheter dressing as well as covering it for showering. We’ve had to get creative and haven’t had much help at all from home health or the hospital. There just aren’t a lot of options. We’ve ordered something that may solve our problem, but of course it’s pricey. Showering in general is a huge chore at this point. We must make sure this area stays completely dry while also scrubbing his body with liquid dial and then surgical scrub has to sit on his entire body for 5 minutes to kill any remaining bacteria. He then has to use a special lotion. I know we’ll get used to this new daily chore, but we all dread shower time at this point!

Up until yesterday afternoon we had been told that Mason’s chemo would start this morning. However, a phone call from his oncologist revealed that while the KU pathologist still thinks were dealing with high-grade osteosarcoma in his femur, they want to be very sure before starting chemo. So, Mason’s slides were overnighted via FedEx and should arrive in Miami at 10 am today. The same doctor who gave us our original diagnosis of his tibia will be reviewing his entire case again. Last time we waited a full month for these results. This time they say it is high enough priority that they expect a turnaround in less than a day. Mason’s oncologist said the soonest we would start chemo would be tomorrow morning and he expects that to be the case. Obviously, we don’t want to start pumping poison into his body unless we absolutely have to. We get the feeling that all of the doctors are still very perplexed at the way that Mason’s cancer is presenting.  Pray for miracles!  Pray that it doesn’t make sense because nothing that our good God does makes sense to humankind.

So, we ended up with a bonus “normal” day! Mason got to go to school this morning and he even walked (limped) in crutch-free! And now, as usual, we wait.

He will run again.

I can’t express to you how hard it is to kiss your healthy baby and send him off for more painful procedures, knowing we are coming to the end of a healthy boy for a very long time. A whole year.

Mason is vibrant, strong, and healthy in every way. You don’t for one second look at this boy and think weak, frail, or sickly. He is energetic and all boy. Before crutches, he spent most available daylight hours outside running and laughing, waving light sabers around or playing kickball, baseball, basketball, or football. He mostly loved playing with his dad. And he could manipulate that man like no other into putting down his school work to play. But, every now and then he would even convince me to join him in a light saber fight. I’m not gonna lie. Those retractable light sabers that fling out with the flick of a wrist are super fun. But what I really enjoy the most is the look that Mason gives me as we “fight.” It was a mixture of delight and amazement. He was always amazed that mom could actually block his jabs. And we always ended sweaty and laughing hysterically. I took all of these moments for granted. I can not wait until the day I can watch him run again. I even miss seeing him pout as his sister beats him when they race. I even miss watching him try to cheat so that somehow, some way she will not be faster for once. This picture was taken the last day he was able to run – the day before his first biopsy. It’s only been 2 months and yet it feels like 2 years. We’ve been through so much since that warm December day.

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Please pray. We are taking up residency in KU Hospital for the next 2 days. We are going to experience life on the pediatric floor for the first of many times in the coming year. Pray for good people and amazing care. Pray for little pain and not losing sight of our goal – a healthy, happy Mason. Pray that each time he wakes from another anesthesia or makes it through another treatment he will still be the same happy, funny boy we laugh with everyday.

Priority = Mason

It’s been a trying week. I know I’ve said this so many times, but it just continues to prove true. Each conversation with one of Mason’s doctors is somehow worse than the one before.

In the past 6 days, I’ve easily had over a dozen phone conversations with doctors and nurses not to mention the very long day spent in the PACU on Monday. It’s overwhelming and exhausting and literally every time we think we have things somewhat figured out, the next phone calls changes everything.

Monday’s arteriogram went well as far as we know. This was done in preparation for resection surgery on the tibia which will be at least 12 weeks down the road. This is the surgery where they will have to take one of Mason’s fibulas and fold it in half to create a new tibia to replace the 10-12 cm section they will remove. Unless there is something unusual about the vascular structure of his legs, we don’t expect to hear any results of this test until surgery planning time.

The battle we’ve faced the last few days has been an unexpected, completely unnecessary one. We have found ourselves in the middle of two very skilled doctors who can’t agree on Mason’s treatment and haven’t even attempted to present a united front for us. Given the fact that we’ve found ourselves so consumed with sadness and worry, it’s become difficult to make easy, everyday decisions, much less major medical decisions. It is really difficult to put your trust in medical professionals who can’t agree. We began to question everything this week and started seeking all options. Today, after the momma bear in me came out, Matt and I finally feel like Mason is again the priority and his doctors are coming together in his best interest. There is one thing I know for sure in all of this – I do not want to look back on this time and regret not advocating well for my son. But, I want to do so with kindness and grace. I don’t want to forget that we are not the only family dealing with this horrible disease even though at times I feel like we have to be.

Here’s what I have learned since I last wrote. And, I’m warning you, there is a good chance that before this post goes live, I will have had another medical conversation and half of what I’m about to type will be incorrect.

– There are actually 4 tumors total. 3 of them are in the top of the femur (golf ball, marble, and BB sized.) One is the original tumor in the tibia.
– The tumor in his tibia is the low grade intramedullary one that is so completely rare. The 3 in his femur are actually in the cortex (hard part) of the bone and appear to high grade typical osteosarcomas that are now metastasizing.
– It is likely that the cancer will metastasize to his lungs within 6 months if chemo is not started. However, there is this rare (let me count the ways this word rare has proven to be true) chance that these 3 areas are not metastasizing tumors, but instead a bone infection. This is the one time we actually want the rare option.
– Chemotherapy will be a full year of treatments.
– Our biggest fight during chemo will be keeping Mason in a healthy environment as his immune system will be weakened so drastically. This will mean extreme precautions to avoid complications.

Next steps:
Friday –
1. CT guided needle biopsy of largest tumor in femur. 10 samples will be taken and Mason will be in some pain, but very little compared to his last biopsy.
2. If the area does NOT appear to be an infection, a double lumen Hickman catheter will be placed under his clavicle to begin chemotherapy.

Monday –
1. Baseline hearing test because chemo can decrease hearing.
2. Echocardiogram because chemo can damage the heart.

Next week at some point – Chemotherapy will begin.

12 weeks after chemo starts – He should be ready for resection surgery/surgeries.

We are so grateful for your prayers and unending support.