Surgery Update

We met with our surgeon here in Dallas today. He actually called and talked to us for a long time last night about options too, but we still went into the office today to discuss further.  Basically, he laid out the two best options. The first option is to remove the tumor that is on the top of the tibia and do a complete knee replacement. It is more complicated than that, but essentially a total knee replacement. This is possible because he feels comfortable that we can achieve good margins around the tumor which is important to help prevent a recurrence. The second option is amputation. He does not feel that amputation gives her a significantly better chance of the cancer not coming back again - so we have decided to do the knee replacement here in Dallas.

We are tentatively scheduled for surgery on Monday, February 4th. It does sound like a long recovery, especially with the 5-day rounds of chemo that will need to happen while her body is trying to heal from surgery and that she can't bend her knee AT ALL for 6-8 weeks... but she is tough and an All-Star on crutches. As you probably know, knees don't last long - about 15 years (these days) so she will likely have to have another knee replacement when she is 30. He does believe that in 15 years the technology might be better and hopefully, her next knee will last longer than 15 years.

We've been worried about working through the options for a while now, and we appreciate all of the extra prayers for us and our physicians to help come up with the right options.  We feel really good about our decision.

**Update: The surgery is confirmed for Monday, February 4th at 8:00am at Medical City Dallas.

1/21 Update

Last week felt like an incredibly normal week - I almost forgot we are fighting through this terrible mess.

Brad and I had an extremely interesting conference call with Dr. Pete Anderson, an oncologist from the Cleveland Clinic who is doing a lot of research about osteosarcoma. He was so helpful and gave us a lot to think about and consider. Last Thursday Madeline had an MRI and chest CT. The appointment was a nightmare of inefficiency, miscommunication and terrible customer service but the results thankfully held no surprises. Her chest is clear (this is important, as osteo usually moves to the lungs) and the MRI shows the tumor has scar tissue around it which is a good sign that the chemo is working.

We will meet with our surgeon this week. We are praying that he will recommend a very straightforward limb salvage surgery and that she will have good mobility in the future. She also has an appointment with her oncologist afterward. Last week we were not able to speak with our oncology team at the appointment about what the Cleveland Clinic doctor recommended. Hoping this conversation might happen this week.

If we want a second opinion on the surgery we also have an appointment with another orthopedic oncologist at MD Anderson at the beginning of February. I am guessing if we decide to get a 2nd opinion we will need to do another 5-day round of chemo beginning this weekend and hope Madeline is feeling well enough to travel to Houston for the appointment the week after.

As always thank you for thinking of us and praying for Madeline. We feel so loved and supported by everyone.

1/13 Madeline Update

This week flew by with school starting for all of us. My mom flew in on Tuesday to be at the house with Madeline during the day and to be here in the afternoon when her amazing teachers come and keep her up with her classes. Tuesday she had a doctor's appointment which turned into a long day since she needed a blood transfusion and we didn't get home until 8pm. I wasn't quite prepared to be at the hospital all afternoon but it worked out okay. On Friday, she had another appointment and given the events of Tuesday, I packed ALL the things and of course, we didn't need to stay (which was a good thing) but I was prepared!!

This week Brad and I are having a virtual consult with an osteosarcoma specialist from the Cleveland Clinic just to hear what his thoughts are about Madeline's case. There seems to be a lot of discussion about how to proceed after surgery so we would like another opinion. It is so frustrating that these treatments are over 40 years old - isn't that ridiculous?? What is also ridiculous is that only 4% of all cancer funding goes toward childhood cancer - it makes me so frustrated. I am a researcher at heart and it is so disappointing that there is really nothing to research.

On Thursday she will have an MRI and chest CT and another appointment to check her counts. Most likely we will be able to meet with the surgeon on the following Tuesday to go over and schedule the surgery. Our prayer is to have options and that limb salvage surgery is not only a possibility but a clear choice.

For my local friends - we are not doing a MealTrain right now.  I may do one when Madeline has surgery in a few weeks to be sure Ben has food to eat at the house. I promise to let you know if I decide to do this. We do pick up food when we are at the hospital because Madeline refuses to eat the food there and to be fair the food service schedule usually doesn't align with our day. She loves: Zoe's Kitchen, Chick Fil A, Cane's, La Madeleine, Whole Foods, Chipotle and breakfast from Starbucks.

Thank you for the prayers, good thoughts, and support. We are so very grateful.

Happy New Year

Just a quick update on Madeline. She was discharged on New Year's Eve and we made it home just in time to ring in 2019  from our comfy couch. She is actually feeling much better than the last time but she is really, really tired and her internal clock is all messed up. She will go back for a checkup with her oncologists on Tuesday afternoon and then we will continue with these weekly check-ins until they feel she is strong enough for surgery. My best guess would be in about three weeks. I believe her surgeon will order a new MRI in the next few weeks and then we will meet with him regarding the surgery plan. The hope is that these big doses of chemo will have destroyed the tumor in her leg and prevented the cancer from spreading anywhere else. After surgery to remove the tumor on her tibia she will have a few weeks to rest and recover and then she will have a few more rounds of chemo.

Thank you for all of the prayers and healing thoughts. We appreciate them all!