A Shot in the Leg

Last Friday, I took the girls to the doctor. Caroline had to get a flu shot, and if she was brave, she knew there was a cookie waiting for her on the other end. She patiently waited, and got the shot without even crying. It was a moment of bravery and she had a shiny silver bandaid as a trophy across her thigh to prove what a big girl she was. I was so proud of her. She had conquered painful things with a little motivation and willpower.

Then it all unraveled. She never wanted to take her band-aid off. We’re post-band-aid placement day 4 and there have been tears every time she has had to expose her wound—pulling her pants down to go to the bathroom and changing into her jammies. We postponed bath night by 3 days because she couldn’t handle the thought. If her pants were off, she needed to cover the area with a towel, and suddenly developed a limp. Today it came time to rip off the band-aid and jump in the tub (because 10 days is long enough to go without bathing). You would think she broke her femur from the screams.

Having a quick cuddle with lambie after preschool.

Having a 3 year old that cries every time she falls, I’ve learned to ask her if she hurt her body or her emotions. I’m trying to teach her to understand the difference between the two types of pain. But this time there was no need to ask. This is 100% emotional, she is just giving it a physical outlet.

I wish I knew all that was going on in her mind, what was causing this intense need for security. Clearly, she has had the rug pulled out from under her, but if that is what’s driving this, it’s the first real manifestation of the pain of losing her father, and it seems to be a late and sudden start. Regardless of the cause, I appreciate the clear picture of what is going on in my heart. Often I teach my kids life lessens, only to repeat them to myself. Be patient. Pray for comfort. Look to others for strength. Have faith. Remember all the times in the past when that shot hurt, but over time stopped bleeding and the pain subsided.

Caroline went to preschool this morning wearing shorts. I hope that she will see that she is able to run and play without hinderance from her once-wounded leg. I’ll continue to talk to her about it– both the shot and her daddy. Not forgetting the pain, but talking through it, praying for healing, remembering why we miss him so much, and hoping we don’t get the flu.

Six Months Later

I have intentionally been quiet, taking time to think and heal, and play with my kids. So naturally, the question I hear so often is, “How are you?!” And fortunately (although maybe not so fortunate if you’re looking for a nice answer) I am able to tell you: life is hard, and sad, and good.

I can see ways the Lord has provided for me in this time. I’m working at the hospital 4 days a week, which has been a good balance. Work is one of the only environments where I was not known as part of “Tony & Mere” and so my role there hasn’t had to change like it has in all other areas of my life. My coworkers have been supportive and thankfully don’t get weird in those moments when I cry at work. At home, we have transitioned from Taylor watching the girls during the day to Julie. Both nannies have been really good with the girls and I have so much peace about leaving them during the day. Having Eve & Cody in the house with me & the girls has been truly amazing, and keeps me from the brink of insanity. We really do have a lot of fun, and it has been a blessing to be able to enjoy moments of joy every day with all of the girls. I’m completely biased, but I think they are some of the sweetest, smartest, and happiest kids I know.

 

I grew up in the 90s, and feel like I was heavily influenced by the culture of Disney and Chicken Soup for the Soul, so while I am inclined to wrap all of this up in a bow and say “we’re doing it, we’re fine”. It just isn’t that nice. Life is hard. Every day feels like a marathon. Parenting all three girls all evening, every evening is hard. I miss being able to divvy up kids or ‘tap out’ when Caroline and I butt heads for the umteenth time in a night.

It has been 6 months since Tony died, which means it’s been 1 year since his major resection surgery. Both anniversaries make this day difficult. I remember in the immediate aftershock of his death, people told me that it would get a bit better, and then it would be hard around the 6 month mark. Six months has been enough time for me to learn to get on with life, however, I still miss Tony all the time. That has not gotten any easier, and I’m starting to wonder if it will. In the midst of the hard, I can see where God is giving me strength for each day. I pray each night with Caroline for peace, for moments of joy to bubble up, and hope for tomorrow. And so for now, I take everything one day at a time.

Even though it is hard to plan things like vacations, I have been able to get away and do some hiking, which has been the best kind of therapy.

Time

I have been thinking a lot about timing lately. Not the passage of time itself, but timing. The period of time when something happens. One definition of timing is: “The control of when something should be done”.  I think more and more I am realizing that I have no control over the orchestration of events in my life. Instead I see the Lord revealed in the timing of things.

So what are some of these events? Let’s start with some dates. Tony had his resection surgery September 1, and after which we thought he was “cancer free”. He died exactly 6 months later, on March 1. This year, March 1 was also Ash Wednesday, which marks the beginning of Lent, a solemn time of sacrifice and reflection. The timing seemed very fitting.

Lately, even His provisions are given with beautiful timing. The biggest need, as I see it, is care for my family. The past few weeks, I have had several people ask questions about how I am going to live my life. Even when I was closing some accounts at the bank, the man helping me asked, “so what are you and the girls going to do?” Honestly, I don’t have much of an idea. This isn’t anything I have a plan for. It’s really hard for me to take care of all three girls on my own. The thought of doing it everyday with no end in sight seems daunting. But I have some peace the Lord will work it out.

I’ve been praying for God’s provision. I have had about 30 people join me in this prayer. One of my biggest needs is for a nanny that could come to my house four days a week and watch the girls. I need someone with energy and who isn’t afraid to talk about heaven, among other things. This felt hard to find, so we started praying.

I had gone to Florida for a vacation with Caroline and some friends in the middle of March. When I returned, I had a week left before I had to start work, and in that week, I texted the two people I know who nanny. I asked them if they had any interest or availability to watch my girls.  Do you know what they said? One of them could do it long-term, but she can’t start until August. The other one? She just resigned her previous job and could start in two weeks, but is starting grad school in August so could only work through the end of the summer. Pretty perfect. And worked out in less than a week. Thank you Lord.

So the time when I’m at work is covered, but what about the in between times? The early mornings when everyone is waking up and I’m trying to get out the door? Or the evenings, when I’m trying to get everyone fed and to bed? Those times are exhausting for any parent. Before I could worry too much, my dear friend, Eve, and her husband, Cody, came to me and offered to move into my house and help me take care of the girls. It’s something they had been praying about for awhile. When they offered, all I could do was cry.  It’s a provision I couldn’t have even imagined or asked for.

Cody, Eve, & Reggie

I am completely humbled by the way the Lord has provided so beautifully for my  most immediate needs in taking care of my family. And the timing?! I think it is no coincidence that Eve and Cody moved in last Friday, on Good Friday. It felt like an end to a very hard period of Lent. And so on Easter, though feeling the absence of Tony, I had friends over to celebrate. Together we packed in my house for egg hunts and conversations over brunch. We shared stories about the Lord, both what He has done for us, and what He continues to do. Seeing the timing of these events, these provisions, has been a welcomed encouragement in an otherwise difficult season.

Audrey & Emily on Easter (7 months old)

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.

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

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.

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.

A Week of Pleurodesis

It’s been almost a week since Tony’s pleurodesis. About a week that he’s been in the hospital, though it has felt much longer than that. The procedure he had combined a lung biopsy with a pleurodesis. Don’t know what a pleurodesis is? As I’ve come to understand it, it’s where they pull fluid off the lung and insert talc into the lining between the lung and the wall of the chest cavity. The talc is highly irritating and causes scar tissue to form, adhering the lung to the chest wall. We were told this is painful. We were not prepared for just how painful it was. The first 3 days were very difficult because of the pain, but Tony has endured them. He is feeling better, and has been in good spirits overall. 

Visits from Caroline will help lighten any mood.

We are now playing the chest tube drain game. Once Tony’s chest tube is no longer draining fluid, they will pull it, watch him for a day, and if all goes well, then send him home. We are happy with the care he has gotten, but are ready to have him back home. Caroline especially misses having her daddy at home, though she thinks the hospital is a pretty great place to visit (if nothing else, for the endless supply of gloves).

In the meantime, our community has worked to meet all of our needs. With 2 infants, a toddler, a working mom, and Tony in the hospital, we are a needy bunch. Our people continue to make us dinner, hold babies, feed them during the night, give massages, work on our house, sit with us, entertain Caroline, run errands, and pray continuously. We feel so loved. Thank you so much. We feel we can do this with your help.

Don’t stop praying.

Christmas is for this

This Christmas was looking to be one we would not soon forget. This is the first year Caroline can really start to grasp what Christmas is about. Add in two new babies and two weary parents and we were certain there would be memories. 

Emily, Caroline & Audrey in winter jammies

Getting the news of new cancer growth hit us hard. It is so difficult to be grieving, struggling, really anything but jolly at Christmas. Our news came 17 days before Christmas, yet we were determined it would not derail our desire to enjoy some of the simple things in life. We went and saw lights with Caroline, made cookies, and played in the snow. 

Caroline’s first snowman

Still, we have cried our way through this advent season. I hate that my heart is so heavy while it seems the rest of the world is calm & bright, holly & jolly, etc…

And then I realized, it is for this that Christ came into this world. He brings the hope I long for. A friend sent me these words from Max Lucado, and I think they speak so perfectly to the place where we find ourselves: 

Max Lucado- Because of Bethlehem

“The manger dares us to believe the best is yet to be. And it could all begin today.”

Merry Christmas.

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.

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.

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.