How did we get here?!

When Tony was first told he had a sarcoma 3 1/2 years ago, we met with the top oncologist for sarcomas in Indianapolis and followed his recommendations. It seems very schematic, and we could rest knowing we were receiving the best care we could get. There were moments of sheer amazement, when a new drug would work and miraculously remove his pain or when his resection surgery resulted in better than expected outcomes. We felt sheer relief in October when we were told the cancer was gone, and the margins were so good, Tony wouldn’t even need to do any follow-up chemo. We had twins. We celebrated. In November, a group of Tony’s friends surprised him with an evening of brisket, bourbon and bonfires to celebrate Tony and his new cancer-free status. We felt extremely blessed. We had walked through 3 long years of treatments, sick days and doctor’s appointments, but we were a story of survival, and we were stronger for it.

Celebrating with some of his closest friends.

In December, when Tony & I learned that the cancer had returned with a vengeance, it seemed unreal. Surely there would be a treatment that we would follow to a cure. We had done this before. We knew it wouldn’t be easy, but we were ready to take it on. Then started a tailspin of questions: Who should we seek to provide our care? Should we look at drug trials in other cities? If traditional western medicine isn’t giving us any hope of a working treatment plan, should we try alternative therapies? What procedures need to happen in the meantime? We had no idea how quickly these decisions needed to be made, and spent the first few weeks talking about options and enjoying precious times with family at Christmas. We were told Tony may have as few as 100 days left, but that was the worst case scenario, so surely we would have longer than that, because Tony’s a fighter and it seemed crazy for the outcome to be that short.

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Carolers showed up at our door at Christmas time.

The month of January seems a blur. I know somewhere in there he had a painful pleurodesis and hospitalization. We went to Chicago with Caroline and friends. We made the decision to seek alternative cancer treatments. By the end of the month we were refreshed and hopeful. However, the rollercoaster took another turn and Tony discovered DVTs in his legs which turned into another long hospitalization in February. A repeat CT scan revealed progressive tumor growth. This cancer is aggressive. Tony miraculously came home, but was on oxygen now and weaker. We rallied, believing the Lord is up to something, pushing through anxiety, continuing alternative treatments in Carmel and enjoying every moment at home with our kids and close friends.

Swimming in the hotel pool in Chicago

Swimming in the hotel pool in Chicago

And then, the disease reared its ugly head once more. Tony’s tumors are primarily in his lungs, meaning his biggest issues are with breathing, and can change so quickly. This past weekend, he went from walking around the house on 3 liters of oxygen, to feeling unable to catch his breath on 10 liters of oxygen. The hard conversations we’ve had for the past 2 months came to a head yesterday, when we decided to call hospice and start morphine. Our intentions had first been to just have a more long acting control of Tony’s breathing, however he also had difficulty swallowing and no desire to eat, and so that quickly turned into a morphine infusion and a constant flow of people by the house to pray and say good-byes.

A couple of our biggest fans.

A couple of our biggest fans.

How did we get here?! It has been only 75 days since Dr. Rushing told us 100 days was our worst-case prognosis. I feel cheated in every regard. We haven’t had enough time to grasp what is happening. We haven’t had time to take a final family vacation. His health deteriorated so quickly.

Today Tony is laying in the hospital bed we’ve put in our sunroom, with his breathing steadied by a constant flow of morphine. He has moments where he is able to talk with us, and in between he gets good stretches of rest. He is eating and drinking very little. We feel that the end is near, however there is always hope. Some of us continue to pray for a miracle–healing that comes only from the mighty hand of the Father. We know we may look foolish to still believe at this point. Though I’ve never been afraid to look foolish.

An Update

I think this past week has been the longest week of my life (and this is coming from someone who was on bedrest for months). Tony had a pulmonary function test, an echocardiogram, 3 doctors appointments and a bronchoscopy. All of that, and we still don’t have great answers or a clear direction for our next step. 

When we met with Tony’s oncologist, I asked for him to clarify what has happened, since I am still so stunned by the speed and volume of tumor growth. He said that though rare, sometimes after a resection surgery, the growth factors that aid in the healing process can activate  cancer cells in other parts of the body. The result is an “explosion” of cancer growth. It happens about 1% of the time. We are the unfortunate 1%. 

These conversations with the doctor are hard, because there are so many unknowns. There is a likelihood that after the initial burst of growth, it can slow down. We won’t know that until we have further scans to compare the rates of growth. However, to get an overall sense of what our time may look like, Tony asked Dr Rushing point blank, if the tumors continue to grow this rapidly, how long does he have. “100 days”. Then he asked what are the odds of a cure. His answer……PRAYER. 

Our hearts sunk, and yet, we believe in the power of prayer. We serve an amazing God, with plans that reach far beyond our short time on this earth. So we pray for healing. We pray for peace every step of the way, and in the moments when unbelief creeps in, we pray for faith.

The next steps are likely slow and irritating. We have a friend who reached out to the National Cancer Institute in Maryland. They may have an immunotherapy trial Tony could qualify for. Our oncologist thinks a trial may be the best hope for slowing things down and getting some response. One of the difficulties with a trial is that we wouldn’t want to do any chemo that could potentially exclude Tony from the trial, and so we wait, with no treatment in the meantime.

We are not throwing in the towel. We are not losing hope. We are preparing for the worst and JOYFULLY celebrating every day we have.

Please continue to pray with us, for peace, for healing, and for discernment of our next steps.

These words have left us speechless

Family and friends, this is Tony writing. Normally you’re reading Mere’s well crafted words on the blog, but I wanted to write this particular post. It’s been a rough few days in our house. We’ve had some sickness in our house over the last few weeks: babies with runny noses, mom and dad coughing and feeling puny at times. Everyone was making slow progress in getting better, yet I was still feeling overly tired and worn out after doing things that shouldn’t have made me tired. I decided to move up some scans from mid-Jan to last week. These are routine follow up scans post surgery and post chemo to check on the cancer, more importantly to continue to verify the lack of cancer after the successful resection.  
When it comes to being sick with a cold or mild aches and pains, believe it or not, I can be kind of a wimp….I don’t like feeling bad… at least when I think I should be feeling fine. However, something in my gut told me to move the scans up just to rule out anything major, put my mind at ease and encourage me to “suck it up” and deal with my winter cold.

 Unfortunately the conversation with my oncologist after he reviewed the scans was not what we were hoping for. The cancer has returned with some tenacity. I have a large tumor in each lung, and he stopped counting the smaller ones when he reached 20. He also located a tumor in my tailbone, which explains the pain I’ve been dealing with over the last 3-4 weeks. We thought it was overwork and just some adjusting to the way my muscles in my core were recovering….not the case.

So, we’re a little stunned. I went to the appointment to put my mind at ease and get on with things. In reality we just entered another nightmare. Needless to say, I’m pretty sad, really angry and a little fearful of what the future looks like. I now have 3 beautiful daughters and an incredible wife. I’m more sad and concerned for them than I am with my own health. For some reason I didn’t want Meredith to have to write this, I don’t know why, I just felt I wanted to share this.
We’re preparing for another battle, Round 348……..and counting.

We don’t know a lot of details yet, I have lots of appointments and meetings getting scheduled for next week. I don’t know what treatment options we’re looking at or what surgeries would look like at this point. We’ll try and keep you all updated. We greatly appreciate your prayers and words of encouragement.   
We’ll talk more soon.

Tony

September 2016

September started with surgery for Tony. We knew the month could be action-packed, and it did not disappoint.


When Tony had his surgery, I was 33 weeks pregnant and praying for a few more weeks. I wanted to get further along, both for the health of the girls, but also to allow Tony some time to recover from such an invasive surgery.

Our moms have tag teamed and helped us out the last 5 weeks.

Thankfully, this prayer was answered, and the girls came halfway through September. At times I wonder if we could have gotten farther along, but it wasn’t meant to be. On September 15th, my OB removed my cerclage, and broke my water in the process (something we knew could happen). So, we went across the hall to labor & delivery and prepared to have a couple of babies.

Feeling huge. The last day of my pregnancy.

We settled into our room and waited for labor to ramp up. My OB was hopeful that both babies could be delivered without a C-section, but informed us that all twin births occur in the OR, because of the high probability of surgical interventions. And so, around 4:30am I awoke and knew it was time to push. As the nurses were wheeling me down to the OR, the doctor arrived, as did anesthesia.


It took only 6 pushes for Audrey to be born. As Tony & I were listening to her sweet cries, we heard that the second baby had dropped breech. The whole team in the OR prepped for a C-section and quickly removed Emily. It was a whirlwind, all happening from start to finish in about 30 minutes. The result was 2 premature, but healthy baby girls.

Audrey Renee Hayden   –  Friday September 16, 2016   5:16am      5lbs  8oz

Emily Anne Hayden   –  Friday September 16, 2016    5:29am     5lbs 11oz

Getting to hold Audrey and Emily for the first time.

The girls were taken to the NICU. Born at 35 weeks, they were healthy enough they didn’t need any medications or oxygen. However, they hadn’t yet mastered the pattern of suck-swallow-breathe and so struggled to eat enough calories to keep their growth up. They both had feeding tubes, and every 3 hours, would drink what they could from a bottle, and then have the rest of it poured down their tube.

Emily and Audrey

The nurses told us being the parents of “feeder-grower” babies is often the most frustrating, because the babies are big and healthy, and yet can spend weeks in the NICU learning how to eat.


For the past 3 weeks, we’ve been going to the NICU each day. In the process, we’ve worked through a range of emotions. In the end, we remind ourselves this is only temporary.


Audrey made a quick turnaround last week. She started taking all of her bottles, and we brought her home on Monday. Caroline may be the most excited to have her home, and wants to regularly touch her feet, find her belly button, and help change her diaper. We’re praying Emily will be able to come home soon, and we can have our family together in one place. Until then, we continue to take everything a day at a time, and be thankful for all that has happened this past month.

Cancer Free!?!

Tony went into surgery Thursday  morning.  Before the surgery, Dr. Bihrle and his residents went over all of the possible outcomes and complications that could happen during the surgery. At the very end, he went back and looked at the latest scan again and saw that the tumor butted right up to the pubic bone. He came to ask Tony about his pain, and couldn’t believe he wasn’t in more pain. “Maybe it’s shrunk a bit since that scan two weeks ago”. Clearly we weren’t going to know what they would find until they got into the OR.  But I was hopeful.

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The next 5 hours were torturous. We’d receive updates during the surgery, but for the most part they were something like “He’s doing well”. We heard they were calling an ortho surgeon in, and then soon after, they were finished. We had to wait patiently to meet with Dr. Bihrle. In reality, I think it was about 30 minutes, but it felt like hours. I’m sure my blood pressure was sky high. Then Dr. Bihrle gave us the news:

  • The tumor was bigger than he expected: about the size of a baked potato. (eventually we’ll have pictures)
  • It was hard as a rock, which made it hard to remove, but they think they got it all with margins.
  • They had to call the orthopedist in to shave back part of the pubic bone. This was a bit involved– they had to make an abdominal incision and cut some of his groin muscles, which makes his recovery quite painful.
  • In taking out the tumor, there were some arteries and nerves that were taken out as well. This was unavoidable and something we knew about going into the surgery. This will have implications in the short term and long term, and we would appreciate your continued prayer as Tony recovers from the surgery and gets used to a new normal.
  • The most exciting moment of the day, for everyone it seems, is that the urethra was completely spared. Dr. Bihrle had thought it was taken up by the tumor. The whole surgery team was amazed to find that they were able to save all of the urethra, and so far it looks healthy. We haven’t gotten a really great explanation about how this was possible, and I am claiming it as a complete miracle! We talked to our oncologist about it and he said, “that has more to do with prayer than anything any surgeon could do”. We agree, and we are so grateful.

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It could be a slow road to recovery. Tony’s been hitting great goals of eating and walking, but it will take awhile to get the post-op pain under control.  We’re hoping our baby girls hold off a couple more weeks so that he can recover more before their arrival. Please keep praying for us, as this month looks like it will be full of ups, downs, and who knows what else.

The Day Has Come

This summer has been rolling along, and it seems as though our unofficial theme has been “stay the course”. We have been taking it one day, one week, at a time. In my pregnancy, I have reached the level of huge, currently carrying a total of 9lbs of baby. Though strangers are now asking when I’m due, I’m still hoping and praying for 5 more weeks to get me to my goal of 37 weeks with these twins.

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Tony and Caroline at the State Fair

This summer, Tony has continued the combination of Xalkori twice a day and a Nivolumab infusion every 2 weeks. He’s had some speed bumps: some increased pain after his infusions due to an immune-mediated response, a case of cellulitis that had him spending a night in the ER, and a car accident (that one the whole family was a part of– thankfully we came away without any injuries). Through all of this, Tony’s oncologist encouraged him that the pain is a normal part of Nivolumab treatment and we couldn’t see how effective it was until he had completed 4-5 months of therapy.

Tony went in for scans last week, and they found that the tumor had grown slightly, even after 4 months of combined treatments. So after talking with Dr. Rushing, we realized: we’ve exhausted all our options, and it is time for resection. Last Thursday when we heard that word resection it was completely surreal. The thought has been lingering in the back of our minds for 3 years now, and we’ve been trying everything possible to avoid it. And now, here we are face to face with the idea of a potentially life-altering surgery.

Our current reading selection.

Our current reading selection.

We had an appointment on Wednesday with the urology surgeon and talked through all of the possible outcomes– most of which he won’t know until he gets into the surgery. That leaves a lot of room for worry. At first, my mind goes to worst case scenarios: not only could the surgery be long and involved, but Tony could have loss of function, and complications. Then there’s the possibility that he could be recovering in the hospital while I go into labor. Then what would we do? Just be ok with him missing the birth of his twin daughters!? Worry can be a downward spiral.

And then the other night as Caroline & I were praying, I realized that I’m jumping to conclusions again. I know, imagine that– a pregnant woman jumping to emotional conclusions!! I did this when we first found out we were having twins. People were ready to congratulate us and repeatedly said how excited they were for us. I was just scared– fearing a difficult pregnancy. But then, I realized the Lord gave us twins, and I could trust Him to walk us through each day of pregnancy. So why is my first reaction always to a bad scenario!? Maybe the Lord is closing the chapter of chemotherapy and all of its dreadful side effects before the twins’ arrival. Maybe this is just what we need in the timing that we need it.

IMG_7980Tony’s surgery is scheduled for Thursday morning at 10am. Of course we are still nervous about it and how all of this will play out for us. We are praying every day for healing and a minimally invasive surgery.

…and sometimes we just need a large visual reminder of where our heart needs to be through all of this.

Immunotherapy

FullSizeRenderWe got our issue of Time magazine this week on Monday and after looking at the cover asked, “what’s immunotherapy?!” Tony read much of the article and was getting interested in finding out if immunotherapy is a possible option for his cancer treatment. The great irony came the next day, when we had an appointment with Tony’s oncologist and learned that they have a new treatment option for him (and it’s considered immunotherapy).

So let’s back up. In February, Tony started feeling some tumor-related pain. He had a scan and found a small new growth off of the original tumor. They biopsied it and sent it off for genomic testing. We had done this with the original tumor a year and a half ago, but the tests they run now are more extensive, and we were able to get better results this time. So what were the results? They looked a little something like this:

 Those scribbles in the top right corner are the name of a genetic mutation they found within the tumor cells. They think it is what caused the cancer in the first place, they just weren’t able to test for it originally. They found that this mutation causes the tumor to overproduce a MET receptor. We knew this part before, and Tony’s current treatment, Crizotinib (Xalkori), targets MET. The doctors think that maybe after a year it isn’t able to fully cover the MET production by the tumor, which is probably why there is some new growth.

The doctors also say that Tony is PDL+1, which means his tumor is using a camouflage (ligand called PDL) to hide from the killer T-cells of Tony’s immune system. There is a drug available, Nivolumab, which targets this PDL ligand and allows the killer T-cell to find and kill the cancer cells. Hence, the drug works to help the immune system work– immunotherapy.

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We had thought that a surgery would be coming up, however after talking to the geneticist, oncologist and urologist, we’ve decided to try 4-6 rounds of this new treatment. We’ll then re-evaluate and see if we should continue chemo or proceed to a surgery. The side effects of this drug, Nivolumab, are generally pretty small.  However, no one has ever tried this drug in combination with Crizotinib, so they’re going to watch Tony closely to make sure his body/liver can handle it all.  One day this will all be over and maybe a distant memory, but for now we’re back at it, one treatment, one week at a time.