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

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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.

To Motherhood

I feel that Mother’s Day is an appropriate day to post about how we are expecting the Hayden family to grow this Fall! It’s been a bit of a wild ride already, but at this point, I’d expect nothing less.

Over the course of the last 2 years, Tony has been on a total of 5 chemotherapy agents that each can take their toll on our ability to have children. So, this time around we had to use non-conventional methods to get pregnant. It is not at all glamorous, and I now have so much more compassion for couples who must use doctors for something that the rest of the population does so naturally. Since I haven’t had issues getting pregnant in the past, and am not a good candidate for carrying multiples given my history, we decided to do inseminations. Less intervention and lower risk.

We were elated when we learned, in February, that we were pregnant. Then our emotions flipped in March when our 8 week ultrasound showed that I am carrying twins. Never in my mind was I prepared for this. We had specific conversations with the doctor about how I am terrified by the idea of carrying multiples, and made sure not to do anything that could increase our risk. But here we are, expecting two more additions to our family.


After getting through the initial shock and denial, we’ve come to accept the fact that we’re having twins. The Lord has seen us through so much, and if this is something He is blessing us with, then we need to trust He will see us through again. In addition, we’ve taken some practical steps to lessen my chances of preterm labor, as much as is in our power at least. At work, I’m only working in areas of the pharmacy where I generally sit at a desk all day. At home, we’ve tried to stick to a 10lb lifting restriction. This means Caroline has had to grow up fast, and now gets in and out of her car seat on her own, eats at her own table & chairs, and has moved into a big girl bed. 

I also had a preventative cerclage done in April (if you don’t know what this is, check Wikipedia, but please stay away from YouTube). I’ll also start weekly injectable progesterone this week.

We’re about 17 weeks into this pregnancy and taking it one day at a time. One doctor’s appointment at a time. We’re praying each day for the Lord to sustain us. It seems as though we have a loooong way to go– I’m praying for another 20 weeks! Let’s pray we make it.

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.

Here we go again…

At the beginning of 2016, Tony and I talked about things that we were hoping for in the new year. We talked and prayed, and listed 5 items that we hoped God would lead us into for this year. They’re big ticket items, like a job for Tony and getting to know our neighbors. But what was at the top of the list? Complete healing. Tony has been in a good place with his treatment. He rarely has pain, and just has to battle the nausea and fatigue from his medication (Xalkori). At the end of January, we celebrated a year of being on Xalkori, and are so thankful that it has worked this past year.

 

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And then it all changed last week. Tony suddenly started feeling pain, and then noticed a new bump. He was due to have his quarterly scan this past Monday, and it confirmed, there’s a new nodule. Dr. Rushing refers to it as a “satellite” tumor, that it’s still small and near the original mass. But, the fear remains: something has changed. So here we are again, getting a biopsy to learn what this new growth is. They’ll run genomic testing on it to see if there are genetic markers they can target with a different medication. While the genetics program was still relatively new when we did this over a year ago, they now have a more advanced test with more targets to look for. Before we had the 4, now it’s the 6s.

This gives us some hope. But really, at times I feel it’s just so much I don’t even know what to hope for. Good quality of life? A new medication that works?  A shrinking tumor? A more promising surgery? Miraculous healing? I guess really, I’d welcome any of these. I have come to find that when I have no control over a situation, I can more clearly see God working. As I think through the past 2 years, I can see how God has provided for us in every way, and answered our every need (and when you are sick, there are lots of needs). So why would I doubt that He would continue to be our Provider? The only thing we are waiting on an answer for is a complete cure for Tony.  It seems that in this regard, we must be patient. Wait on the Lord, and continue to put our hope in Him. Will you join us in this? Simply waiting and praying is a difficult place to stay. It doesn’t translate well to our culture of deadlines and exercises. But we have been living in the waiting for 2 years now, and it looks like we’ll be here awhile longer still.