Summer Update

Madeline went back to school in May and finished out her sophomore year with her friends. She took her finals and her AP tests and used the scary-it-is-going-to-break-any-minute elevator every day. She is feeling good and had her port removed on Monday. She is officially NED (no evidence of disease) but will continue to be monitored closely by her oncologists and the orthopedic surgeon that did her limb-salvage surgery. Her leg and knee are doing well. She has a great range of motion with her knee, continues to work with a physical therapist, and her incision is finally starting to heal up now that her blood counts are back in a normal range.

The issue is that there was a complication with her surgery that is affecting her foot. Immediately after the surgery, she could wiggle her toes but then her foot and ankle started to swell up and she lost feeling and movement in her ankle and foot. Her team of doctors and nurses were well aware of the issue but said that they weren't too worried due to the nature of the surgery. However, the feeling and movement have not come back, and her Achilles tendon has contracted to a point where she can't put her foot down at all, not even to "walk" on her tiptoe because her ankle is so contorted.

We met with a team (picture 8 doctors in a VERY small room) at Scottish Rite a couple of weeks ago and they laid out three options. They feel the issue will not be able to be corrected with physical therapy although the neurologist feels strongly that we need to wait at least three more months to see if she regains any feeling or movement in her ankle because periphery nerves DO regenerate but at a very, very slow rate. There are two surgical options (dependent on if she regains feeling or not) that they discussed both with some serious mobility and life implications, and also an above-knee amputation.

We will go back and meet with the Scottish Rite team in early September to discuss the options and make a decision. In the meantime, they will do a nerve study at the end of August and a vascular study in July. Both should provide some more information about which option would be best. The hardest part is waiting - especially as a teacher who is "off" in the summer and thinking about how no one wants her missing more school next year.  The doctors were happy to send us off saying, "Go enjoy your summer" which is a great thing but "Go enjoy your summer on crutches" doesn't really have the same ring to it! Especially when you have been on crutches since February and no matter the choice you make, you will be on crutches until at least December!

I have to be honest and say I am really struggling with all of this and I am sure she is too. Ultimately it is Madeline's decision but it really feels unfair after all that she has been through. She is tough and I admire her strength so much but really - what choice does she have? She has been able to enjoy swimming in our pool this summer (one good thing about not having surgery now) and at least it is her left leg, so she can continue to practice driving - she will turn 16 in August. We appreciate all of the people who continue to pray for our family and check in with us. I had a friend apologize for asking about Madeline and I have to say the opposite is true - thank you for asking about her!!

4/14 Madeline Update

Hi friends!  Our latest news is that Madeline is done with chemo and is now focusing on a full recovery.

The plan had been from the start of this recurrence to try and get two 5-day rounds in before and after her surgery.  We were able to get both in before and one 5-day round in after, but her blood counts have been too low for chemo the last three weeks.  These chemo drugs are harsh, and it’s possible to do more harm than good.   We discussed all of the options with our oncologists and decided to forgo any additional chemo and just focus on her recovery.  

What does that mean?  Well, the unfortunate thing about Osteosarcoma is that we don’t really know, and literally no one really knows...  We’ve said it before, but the fact that they are treating this disease the same way as they have for 30-40 years with varying success is disappointing, to say the least.  The slow recovery of Madeline’s blood counts means that her bone marrow is struggling to recover.  Too much chemo can permanently damage bone marrow, and that could lead to a lot of other serious problems including other really awful things like leukemia…. Right now it’s still looking healthy enough to recover, but additional chemo could change that.  At the same time, you want to do as much chemo as possible to ensure all the cancer cells are dead.  So you have to try and take all the data into consideration and make the best decision you can in a very difficult situation.  Here’s what it came down to:

• This tumor and the previous one were both in a local area
  
• Both of those tumors are permanently removed with clear margins (indicating the cancer is out of her body)
  
• Pre-surgery chemo was 95% effective on the most recent tumor (really good result)
  
• There has been no evidence of disease anywhere else in her body (another indicator that the surgery removed all the cancer)
  
• We were able to get in at least 1 five day round after the tumor had been removed (the idea is the surgery gets the cancer out, and the chemo after is to try and make sure no other cancer was hiding somewhere - one round is better than none)
  
• Blood counts indicate that while bone marrow is marginally healthy enough for chemo, it’s on the brink (cancer sucks, and to potentially cause more harm while trying to cure her makes you sick)
  
• Her surgery was two and a half months ago, and she’s still bleeding from a couple of areas.  Another indicator her blood is struggling to recover.
  
• She still doesn’t have feeling in her foot - some surgery related; some likely due to the chemo impact on her nervous system
  

After weighing all of that, we sat down with Madeline to discuss our options, and together we decided to stop chemo and focus on recovery and pray we made the right decision.  We wish there were a cut and dry answer or proven formula, but there’s no guarantee that doing 4 or even 8 rounds of chemo ensures it never comes back.  So we just pray we’ve done enough, and that these things are God’s way of telling us we’re done with this part and it’s time for Madeline to get on with her life.

That’s what we ask of all of you.  Just pray that we made the right decision and that Madeline is cured.  We pray that she will never have to deal with this disease again, and that she has the chance to live a long, healthy, happy, full life and that she’s able to avoid all of the other potential side effects that fighting cancer brings.  We pray that she’ll get some feeling back in her foot so that she can be as mobile as she wants to be.  She’s beat this once before and overcome drop-foot associated with the first surgery.  We know Madeline can do anything she puts her mind to, so she’ll come out of this even stronger.  We are amazed by her every day.  I can’t imagine dealing with this at age 12 or 15, and she’s done both while keeping up with school work.  She still has a lot of work left to do to get her knee and leg recovered, but knowing Madeline, she’s definitely got this!

Thanks to all of you for your kind words, prayers, dinners, gifts, etc.  None of the material things were necessary, but still very much appreciated.  The prayers are the most important thing, and we believe we could feel the love everyone has sent our way.  

4/6 Madeline Update

I apologize for not updating in so long but everything is okay. The plan is still for Madeline to have one more 5-day chemo.  This should have started last week but her blood work shows that her body is still recovering from the chemo she had a few weeks ago. We tried again this past Thursday with the same result - still too low to start chemo.  So...we will see where she is at her appointment this Thursday. I did remember, in the middle of the night, that at the very beginning of all of this one of the doctors said the protocol would be 2 rounds of chemo, surgery, and then 1-2 rounds of chemo post-surgery. So I guess what is happening is not all that unexpected. The doctor that we saw on Thursday even casually mentioned that perhaps if her body continues to recover so slowly that he might recommend 3-4 days of chemo rather than 5 days. I will update again once we know more on Thursday.

The other good news is that she is feeling good, and each day seems more independent even with the annoying crutches and knee brace. She is able to bend her knee quite a bit, but she still doesn't have feeling in her ankle and foot which is holding her back from walking and putting full weight on her leg.  I know she is so tired of being home and I can only imagine how slowly the days must go by for her. She is really wanting to get back to school and as this last cycle keeps getting put off, I am sure she is well aware that it is pushing back the timeline of returning to school as well.

As always we are so grateful to everyone for keeping her and our family in their prayers. 

Spring Break 2019

Madeline was released to start chemo this morning by her surgeon. Two more weeks in the lockout brace and then she can start bending her knee a few degrees and then start physical therapy. I am not sure she is very excited about that at all but... progress.

After her appointment with the surgeon, we went to see her oncologist and after a LONG delay, we are all checked in at Medical City for our 5-day spring break vacation. HA ha ha  In all actuality this is probably perfect timing because she is all caught up with her third quarter school work and won't fall behind since it is the break next week. Hopefully, by the following week, she will be feeling okay and her sweet teachers can come by the house. We are now waiting out a LONG delay in getting the chemo started. I don't know why I continue to be so surprised and frankly appalled at how inefficient healthcare is these days - it is truly ridiculous.

The other good news is that her oncology team agrees that they want to do just one more cycle of chemo after this one because her necrosis rate was so high (95%) - so the end is in sight.

A bazillion thanks to everyone for taking such good care of all of us. We appreciate all the love and prayers so much.

2/14 Surgery Update

Madeline is recovering well and being so patient with all of us as we attempt to help her move around. Her pain seems to be getting better each day, and she just seems happy. The pathology report came back yesterday with a 95% necrosis rate and clear margins. This is great news! Last time the necrosis rate was 75% so this is MUCH better.

She had a follow-up appointment with the surgeon today. It was a long appointment and we were there FOREVER but we finally left with an interesting x-ray image of her leg, a fresh dressing, and a spiffy new leg brace. We will go back next Thursday to recheck her leg and hopefully get the staples removed.

My mom pointed out that we are 2/3 of the way through this - chemo (check), surgery (check) and moving toward the last part - more chemo. Now that we have the necrosis rate, we will be able to talk to the oncologists about her treatment plan going forward. 

We are so thankful for our family and friends. We truly feel all of your love and support and are just so very grateful.

Home!

We are at home! Madeline was discharged last night and is doing well.  She is in good spirits, her meds are working to keep the pain at a minimum, and her amazing crutch skills came right back to her. Her leg is splinted from thigh to ankle so it is pretty difficult to get around, but she is doing great. We all slept well last night and enjoyed being at home relaxing today. We will meet with her surgeon on Thursday and hopefully, he will have the pathology report. We are praying for a high necrosis rate which is how they measure cell death of the tumor. This is will determine the chemo plan going forward. We are so thankful the surgery is over and Madeline is on the road to recovery. With the tumor out she is CANCER free!!!

2/5 Post surgery update

Madeline's surgery yesterday went according to plan. Her doctor was able to remove the tumor on her tibia with clear margins and was happy with the knee replacement and reconstruction.

She woke up in excruciating pain and it took most of the afternoon to get it under control. This kept us in the recovery area for a LONG time. Once they got that figured out everything was much better. The nurses were also concerned about blood flow in her foot but the doctors seem to think it is fine and so we will just keep checking on that. At one point there were 4 to 5 people surrounding her bed pressing on her foot which pretty much freaked her out but I trust our doctors and I am glad the nurses are keeping a close eye on it. I am hopeful we can get her up today and that the pain meds keep doing their job.

She was in good spirits last night - talking to us and on her phone with friends. She ate some dinner and seemed to sleep good - in fact she is still sleeping.

Brad's mom is at the house keeping an eye on Ben (and Oliver), and I am so thankful to know they have dinner being delivered each night.  Thank you so much! I will update later today once we get to talk to the doctors.

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!