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.

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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!

 

21,000

Both surgeries were successful and finished on time.  However, he is still in the PACU as his pain level is horrible.  On a scale of 1-10, he said it was a 21,000.  He has had to be sedated several times to get through. This is beyond hard.  We are not sure if he’ll be able to go to the peds unit.  PICU is now possible.  Please pray.image

 

Goodbye Cancer!

#NEGU = Never Ever Give Up

This is the face of a boy excited to be “cancer free” by the end of the day. #PrayforMason

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This is the face of a girl who chose to come along today because her brother asked her to be there even though she hates hospitals.

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Want to know something crazy? He’s excited today for another reason. He LIKES anesthesia. I’m not sure whether to laugh or cry about that. Nine year olds shouldn’t know anesthesia that well. Only this crazy kid. #hesfunny

Heading into surgery very soon around 7:45.  We left this morning at 5 am.  Surgery is expected to be around 4 hours this time. We had good conversations with both surgeons this morning and we are feeling good about their abilities to take care of Mason.  Pray for wisdom, peace, and pain management.

 

UNBELIEVABLE!

You guys. This has been one crazy day. We’re so stunned, it’s hard to know if we should be happy or worried (but we’re going with happy).  We got to the hospital this morning for regularly scheduled chemo. Again, not excited to be there, but trying to look at it as knocking out another week and getting closer to our goal.

Once we had the room all set up and every single thing unpacked, both oncologists paid us a visit. Hmmm…they really like us now?  Maybe, but that’s not why they both came. Just so you know, they never both come. One is usually in clinic while the other does rounds. They had new and breaking news. The kind of news that made me unsteady on my feet. Dr. Loew had already spoken with his friend Dr. Meyers at Memorial Sloan Kettering. And, guess what?  He has a different opinion. Hearts sink. Jaws drop. Fear sets in. Dr. Meyers wants to see Mason. He wants his entire file sent. He does NOT think we should continue chemo, only surgery. Relief, disbelief in what we are hearing, scared but smiling. Mason’s already hooked up to the IV, but chemo hasn’t been hung yet. The doctors then told us that we have to make the decision of whether or not to continue with chemo today. They don’t have a strong opinion either way. Weighing all pros and cons and shaking with our jaws still on the floor, we decided to go home. We signed consent for the transfer of files and decided to have ice cream for lunch. Because, isn’t that what you do when you are celebrating escaping 5 days of time in the hospital and possibly leaving chemo behind forever?!

So…we will be getting a summer vacation after all. We are continuing with surgery next week and then headed to New York mid August. Our kids will take their first ever flight and we will stick out like sore thumbs in Manhattan. Eek!!! This roller coaster just went on an upside down loop.

Prayer is working and so very welcome! Thank you!

A Glimpse of Light!

After our conversation last Wednesday with Mason’s new oncologist, Dr. Loew, we were frustrated and disappointed.  We found out a couple of days later why that conversation was so difficult.  Apparently we had caught him off guard with so many questions and he seemed defensive because he really hadn’t taken the time to study Mason’s  case.  He requested a meeting with Matt and I on Friday and brought with him the pathology report that confirmed Mason had cancer from January 11th.  He asked if we’d  read it … um, yeah… and then went on to comment about how wrong it ended up being … “…the risk of dissemination in this tumor is very low.”  We honestly feel like until we asked the hard questions, Dr. Loew knew very little about Mason’s cancer and journey over the past year. In his defense, he is brand new and has a full load of  kids to learn about.  It’s just unsettling when it’s your kid.

So, on Friday, we had very little notice before our meeting and I quickly sent out a text to my medical professional friends begging for someone available to join us.  Honestly, I was terrified for this meeting and what we might be facing or what decisions we might be asked to make.  Thankfully, our friend Emily, an oncology nurse, made it work in her schedule and attended this meeting to support and help us.  For about 90 minutes, Dr. Loew, one of his nurse practitioners, Mason, Emily, Matt and I sat in a circle in the hospital room and talked only about Mason.  It was a wonderful meeting.  The oncology team had spent time discussing Mason’s case at some point prior to this meeting and they presented to us the plan that the entire team had agreed upon.  You have no idea how wonderful it was to know that we didn’t have the need to take sides.  Professional cancer fighters had all come to an agreement in the best interest of our son.  Hallelujah!  This is how it should have been from the beginning!  Matt and I  got the chance to ask every single question we’d been needing to ask and we didn’t feel hurried or unheard.  We learned a lot just from having Emily there with us.  She lives this from a different perspective everyday.  She reminded us repeatedly that we are not the norm.  Many families/parents really don’t ask questions or want to be as involved as we need to be, for various reasons.  Some can’t handle it emotionally, some find it too difficult to understand, etc.  It was a good reminder of how that must be difficult for a doctor to determine which parents need what.  Overall, we ended the meeting with more respect for the oncology team and especially Dr. Loew and we think he left with more respect for us and our needs.

In that 90 minutes, we got the best news we could possibly get at this point.  The oncology team is in agreement that it would not be beneficial for Mason to continue any more chemotherapy or immunotherapy once he completes 6 full rounds.  This means we should be finished with chemo in just about 2 months!  This week will be the last week of  round 4.  Next week, he’ll have surgery, and then he’ll have 2 full rounds and be DONE before his birthday.  This is the first time since January that we feel like we can see a glimpse of the light at the end of this long tunnel.  It’s huge and will help us get through what will likely be the hardest part in the coming weeks. We are fully aware that cancer is ugly and unpredictable and that we won’t complete this journey for 10 more years in the best case scenario.  But, to know that we could be done living in a hospital in a couple of months is so good.

There is no data that supports adding additional rounds of chemo as they had once thought we might need to do in the case of a “poor response.”  There is also no data to support that the benefits of immunotherapy outweigh the increased toxicity to his body.  So, to answer my original question, whether necrosis is above or below 90%, what will our paths be?  THE SAME.  In osteosarcoma, you must surgically remove any tumors, finish chemotherapy if there is a metastasis, and then move on and watch it like a hawk.  There is no reason to believe that necrosis will be  above 90% in Mason’s case, and even though that would be wonderful and reassuring, it really doesn’t affect the plan. So, we keep on keeping on and trust in God that His plans are far better.

We also have the opportunity at this point to be given the chance to seek a second opinion with the help and blessing of Dr. Loew.  He mentioned several times that he would be happy to facilitate getting a second opinion to help us feel more comfortable with the decision to end chemo.  And, it just so happens that he actually knows Dr. Meyers who created the chemo regimen that Mason is on and Dr. Meyers is actually still in practice at Memorial Sloan Kettering in New York.  Dr. Loew started out in New York.  How convenient is that?  If any doctor should be able to give us an expert opinion, it would be him.  We aren’t exactly sure how this will work.  But, my duh response to Dr. Loew in finding this out was, “Can’t you just email him and ask him if he’s ever treated anyone with a rare case like Mason’s?”  Guess what…he already did.  So, one of three things could happen the best that I can figure out.  Dr. Meyers will email Dr. Loew back, we will have to have Mason’s complete file sent to NY, or we will have to actually go to NY for Mason to be seen.  I was just telling Cathy, Mason’s favorite nurse, the other day about how I have no desire whatsoever to ever go to New York.  Did you know that God actually has a great sense of humor?

Surgery will be so important and more difficult to recover from.  Pray that both surgeons are able to do what needs to be done well.  Dr. Tilley must meticulously replace the plate and screws in the tibia and correct the angles of the bones to heal properly.  But, before that, Dr. Rosenthal will basically be removing Mason’s leg to cut the entire end of his femur off with clear margins and then have to decide down to the millimeter how big of a ball to put into his hip socket and how long the prosthetic should be  to match his left leg perfectly.  When you think about how important these surgeries are to save a leg, it really is amazing how God created these men with brains capable of doing tasks like this repeatedly day after day.

Thank you for your prayers and staying with us on this journey.  Even though this last week of chemo was pretty hard on Mason, our family has had a pretty great last few days.  We got to celebrate our baby girl turning into a teenager and surprising her with an awesome birthday celebration thanks to the help of friends and family.  And, we have begun to start looking to the future again.  Just the thought of Mason being able to spend the majority of 4th grade actually in school is amazing and oh so normal!

Continue to pray for good spirits and happy distractions.  We’ve had some wonderful distractions recently that I need to share.  Unfortunately, I don’t have pictures of them all.  Thank you to those who have used your gifts to make Mason’s days happier.  So many people have stepped up with unique ideas on how they can help and we couldn’t be more grateful!

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Patrick Jones, the magician came over and taught Mason how to do some magic tricks and wowed us all with his magic. So fun!
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We were so lucky to have an extra kid for a week, we all loved having our nephew around.
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One of Mason’s favorite things to do is create, so finding TNK was a huge blessing. He got to create his own play dough between scans on Monday. This is a wonderful foundation that supports families like ours who have a child with a critical illness. Mason absolutely loves it there.
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Our friend, Kristy, had the wonderful idea of bringing puppies that she sells over for Mason to play with. You can’t possibly be unhappy with someone this cute bouncing around!
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A couple of moms from Mason’s basketball team created this opportunity for the boys to have a painting session at the Blanc Palette. So much fun!
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Look at how great they turned out!
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I can’t say enough kind things about this woman. She has filled a lot of gaps in our lives in the last few months. Mason’s school counselor has become like family to us. Here, he is showing her one of his new magic tricks.
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Our super talented cousin, Charla, turned a crappy day into a happy day. Mason absolutely loves his Lego blanket
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He so enjoyed making his sister’s day special. These two are pretty lucky to have each other. Mason picked out the very best gift according to Alli and paid for it with his own money.

This doesn’t even include all of the thoughtful deliveries Mason has had the last couple of weeks.  He’s gotten some really fun stuff to pass the time from friends near and far.  We hope to repay you all for your kindness and prayers someday.  We continue to see evidence of God in our journey.  He has surrounded us by so many people who love us in so many different ways in the hardest moments we’ve ever faced.  Do you know that Mason has gotten a card EVERY SINGLE DAY from the same lovely ladies since diagnosis in January? He gets 2 on Monday because there is no mail on Sundays. And, these same lovely ladies have taxied Alli more times than I can count.  And, these same ladies like to send a gift bag full of things to do and snacks to eat when he goes to the hospital for each stay.  They take Alli shopping so she doesn’t feel left out.  And, they just happen to be on our doorstep holding chocolate pie on the crappiest of days when I come to the door with messy hair, no make-up and a tear-stained face.  And, then there are people that I literally haven’t seen or spoken to since high school.  Almost 20 years have passed and they have found me on Facebook and taken the time to let me know that they appreciate their own normal because of what we are going through.  Or, they show up on my doorstep with boxes full of Star Wars toys because they now work for a toy company and it’s the least they can do.  I even get texts randomly just reminding me that I’m a good mom in the moments when I need to be reminded most.  This is God working through His people.  I honestly can’t tell you that I’ve ever felt such kindness with no expectations from so many people.  It’s weird and overwhelming at times.   And, it makes me feel guilty a lot.  But, I truly feel like I’m learning to see the things in life I used to miss and I’m getting to see God move on a regular basis.  And, while I am definitely not at the point that I would say I’m grateful we are going through this, I am starting to catch glimpses of how it is changing our family for the better.  And, I know I would be spending my time complaining about how hot it is or how tired I am of trying to come up with supper ideas or balance the kids and work, or something else that just plain doesn’t matter if we weren’t experiencing so much pain and suffering right now. Enjoy your normal and take note of the goodness God is trying to show you.  Someday I will be the one holding the chocolate pie on the other side of the door when someone needs it most.  Someday I will gift kindness again instead of taking it. I challenge you to do the same.

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Results

Going back to the hospital today was hard. Mason really did not want to leave. None of us wanted to leave.

Oh, how we miss Dr. Smith – and he hasn’t even been gone a month.  He was so good at explaining scans and patiently answering our many questions. Our new oncologist basically handed us the printouts and asked if we had any questions, but then really didn’t fully answer any of them.  Thankfully, we have tried to decode many scan results on this journey so reading them is less foreign than at the beginning.

Our news today is neither good nor bad.  The 3 tumors in his femur are basically unchanged since the last scan.  With osteosarcoma, this is considered an overall success I guess. They consider the chemo to be effective because there are no new tumors and the ones he has have not grown.  We now have to continue with the next 2 weeks of chemo while his surgeons come up with a plan based on this news. Then, the percentage of necrosis will tell us if we have to add more rounds of chemo than originally planned or not. If the necrosis is 90% or higher and the cancer doesn’t metastasize to his lungs, we can plan to be done with chemo this fall.  If it’s less than 90%, his team of doctors will have to research whether to change chemo drugs, add additional rounds or try immunotherapy.  The last surgery showed 20-30% necrosis.

Pray for…

Good spirits for Mason to continue fighting.

Wisdom and communication amongst his surgeons and entire team.

High percentage of necrosis.

Adjusting well as a family into navigating into living separately for the next 2 months.

Good days.  Mason’s already throwing up on day one and we don’t usually have that with this chemo.

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