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!
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.