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!

Chemo - Round 2

After a quiet Christmas at home, we are back at Medical City for the second round of chemo. Her counts were pretty low yesterday when we arrived, but not low enough to put off this cycle of chemo which is good news. She had a blood transfusion right before day #1 of chemo yesterday and then she will have four more days of chemo which means we will most likely be here through New Years Day.

It was a tough three weeks at home. On one hand I was happy that she could be home (and stay home) to recover but she spent the majority of the time sleeping on the couch which is so very out of character for her. She didn't want to leave the house, she didn't want to see any friends, and she was not feeling well enough to work on her school work. She did watch ALL of the Christmas movies so at least there is that! We were able to meet with her teachers before the winter break and they will start coming to the house once school starts back in January. It was very important to Madeline to stay in all of her classes, so that is what we are going to try to do. Her teachers were all on board so I am hoping she will feel well enough to keep up. She has already lost so much, I want her to be able to reclaim her life when she beats this again and have a reason to fight through all of this one more time.

Emotionally this is a tough one. She knows exactly what she has lost and the list is endless. She also knows the timeline from the first time about how long it takes to feel better, to regrow your hair, the long physical recovery from surgery, and ALL the other things. She just wants to be normal and cancer makes that just about impossible. Normal is so important when you are 15...it just breaks my heart.

The last time we went through this it was easy to share all of the ups and downs with everyone, and this time because she is 15 and I need to respect her privacy it is much harder. So many friends have reached out with prayers for our sweet girl. If you would, pray that she can find some sort of peace with all of this, and that she can find the emotional strength to get through it. I know she has the motivation to live and to fight but the day-to-day things are tough. There is way too much time to think about the current situation and wish you were just a normal 15 year old going to school and being with your friends.

Thank you for all of the messages, Christmas treats, gifts, cards and support. I know everyone wants to help and support our family and we are very grateful. I think Madeline is very overwhelmed by all of the attention. If she hasn't returned your daughter's text messages please know that she is doing the best she can and that she just misses her normal life. We all are.

12/14 Madeline Update

Madeline was so happy to get home on Monday night! We all were - six days is a very long time to be in the hospital. She had a rough couple of days on Tuesday and Wednesday but woke up on Thursday feeling a bit more like herself. This afternoon we had a quick follow-up appointment with her oncologists. Her blood counts are very low, but that is to be expected 8 days after chemo and they should start to go back up over the weekend. She will be home for the next two weeks, and then the second round of chemo will be on December 27th as long as her counts are back where they need to be.

My mom is here through next week keeping an eye on Madeline during the day so that Brad and I can work. Thank you for all the sweet texts, emails, cards, thoughtful gifts, and prayers. We are so grateful for all of the people that are thinking of our family.

Chemo Round 1

Thank you so much for all the calls, texts, prayers and good thoughts. You are literally carrying us through these very long days. Madeline just finished day #3 of chemo - two more days to go. She is feeling horrible and the doctors are scrambling to try something new so the nausea is at least somewhat manageable. As of now, they have just been able to pretty much give her meds to keep her asleep and at least if she's resting she is not miserable.

Once we get to go home, these drugs are supposed to really knock her out and they've already warned us to expect to be back here a few more times as her immune system will be so weak. She will have a few weeks (2 to 4 weeks) to rest, depending on her counts.  Then she will have another five days of in-patient chemo and another few weeks to rest. Once her body is recovered, she will have surgery to remove the tumor on her tibia, and depending on the necrosis rate (how dead the tumor is) will determine how many more rounds of the five-day chemo she will have to endure. They are hoping for two rounds, but most people can only handle one more.

She is still having some significant pain in her leg when she stands up - we are hoping that will subside soon, and she's already not wanting to eat or drink, although she did eat most of the Starbuck's banana bread I brought her this morning, so that is some good news.

We really don't need anything. My mom is at the house taking care of Oliver and "supervising" Ben.
Please pray that the doctors can get her nausea under control, that she can rest, that she can go home as soon as possible, and that once we are home, we can stay at home. I have some legitimate concerns about coordinated care and our health care system, so pray for efficient and effective care.

I have a few messages about t-shirts, bracelets, meals, etc and honestly, I just don't know right now. We do appreciate the love and support and we promise to ask for help if and when we need it. For now, please just pray she can endure this treatment. You know it is BAD when she doesn't even look at her phone for hours...

Oh, and if you plan to visit our home or the hospital, please make sure you have had your flu shot.

GO ARMY, beat navy!!