This Is Our Story...

January 2010 - February 2012
A good friend of mine told me that when she was waiting for her mother to have her treatments she would journal on her phone. I appreciated her advice, but thought that it wouldn’t work for me! When you are sitting in a dark quiet room and you have read through all your magazines, priorities change real quickly. 

It is hard to know where to begin.

 I probably should have been documenting events since he was first diagnosed, but it didn’t seem that dire back then. 

In another way, I can recall when, where, and what emotions I was feeling through it all. 

I thought Jason was a little crazy, wanting to deploy again only four months after returning from his first deployment in the C-130. He explained it to me that if he was able to go on the upcoming deployment, he wouldn’t have to be gone on the next one, during the Christmas holidays. 

He proceeded to do all the pre-deployment preparation, including a trip to the dentist. While at the appointment, the dentist noticed a small sore in his mouth and asked him how long it had been there. Jason explained that he thought it was just a canker that had been there for a couple of months. Jason had never smoked, chewed tobacco, or drank alcohol in his life so a small sore in his mouth was nothing he was too concerned about. The dentist insisted on him getting it biopsied however.

Jason was first sent to an endodontist to have a small biopsy. When the results were inconclusive, they then sent him to an oral surgeon in town to have a larger, quarter size sample taken. At the time, I wasn’t too worried about it. I was mostly experiencing the typical emotions you feel before your spouse deploys.

Jason’s biopsy came back literally the day before he was set to deploy. He was actually in the mobility line when he received the call that his biopsy had come back as carcinoma in-situ. It was explained that this was something that was on the border between normal and full-fledged cancer. Jason wasn’t scared, he was just irritated that he couldn’t deploy with the rest of his squadron, and that someone else would now have to go in his place. I was torn between being glad that he didn’t have to go, but scared of what was going to happen to him. He met with doctors and an ENT surgeon who assured him that they could easily remove it surgically and he would have no further problems. I was reassured by their optimism.

Around this time I found out that I was pregnant. This was obviously a big surprise. We had been trying for the past two years and had given up hope. We already had two beautiful little boys and thought that was all we were supposed to have. I told myself that this was God’s gift to us to give us hope to go on. With the help of my good friend Catherine White and my loving sister, I was able to stay with Jason during this time and not have to worry about my boys. His surgery went well, but he was annoyed they made him stay in the hospital so long. Jason soon regained his ability to eat anything and speak just as clearly as before the surgery. We both felt this was the end of it.

Every three months, Jason and I would have to go to San Antonio for check-ups. During these trips, we left the boys in the care of my friend Mary Peterson so they wouldn’t have to miss school and we looked forward to these outing as our quarterly get away, to make up for the date nights that we frequently missed. After six months, Jason was able to return to flying. That was a big deal for him. He had to wait 18 months before he could deploy though. Lucky for him, a deployment was going out a hair past his 18 month point. Jason had just been made an aircraft commander and although he was sad to leave us again, he was happy that he wouldn’t be around to deal with my raging hormones, since I was pregnant again. This should have been a clue to me that God had sent us another gift because something was about to happen.

After casually bringing up to my fellow air force spouse, whose husband was also on the deployment with Jason, that I was going to drive to Utah to spend the summer with my in-laws,  she said she too was driving that way. To the relief of Jason and my in-laws, we decided to caravan up there. It was a great trip, considering I was pregnant and traveling with three kids, it all went very smoothly. Jason was able to call me on my cell phone from the dessert. It was very convenient, but towards the end of July, I should have noticed that something was up.

We had just returned from our trip and I was at the pool with my friend Alyssa and our kids. I was sitting at the edge of the pool and out of the corner of my eye, I saw a man in a desert flight suit. That was a little odd. I took another look and saw Jason walking toward me!! He was having someone film us behind him. I guess he was hoping to catch a wonderful scene of a beautiful bombshell bathing by the side of the pool jumping into his arms, so glad that he was home. Instead he found a tired, pregnant mom with greasy hair, stubbly legs, in total shock, only being able to say, “Why are you here? What’s wrong? What happened?” That video wasn’t shown much!

It didn’t help that he wasn’t talking well because he had a biopsy that morning. The ENT had come in off  her leave to meet him at Wilford Hall in San Antonio, after he was flown there from Germany. He began to tell me what he had kept a secret from me for the last few weeks. He had noticed another sore on his tongue and they decided to fly him home instead of doing the biopsy in Germany, because of his history and the fact that the deployment was halfway over. At this point, I wasn’t too worried that the cancer at returned, just annoyed that they were being too cautious.

A week later, that was validated when the biopsy came back negative. He was scheduled for routine check-ups just as a precaution. I was due with our fourth little boy on December 25th and one of his appointments was scheduled just two weeks before that. I was scared that if he went to that appointment I would go into labor while he was gone. I guess my prayers were answered when Harrison came to us a month early. At a week and a half old, Harrison took his first trip to San Antonio with us for another biopsy on a spot Jason had noticed again.

We were busy getting ready for Christmas and weren’t even thinking about the results of the latest biopsy. It was December 21st, the Friday before Christmas when Jason got a call from his ENT. He wrote me a note while talking to her, that the latest biopsy had come back positive for squamous cell carcinoma. I crumbled to the ground. Really! She couldn’t have waited until after Christmas to tell us. Jason was trying to be positive and tell me that it was a small tumor and that it was very treatable.

I tried to stay positive, but all I could think about was that if it had spread to his lymph nodes that he was going to die. I stayed like that for two weeks until he had the scans that proved it had not spread. With my faith renewed we then had to decide which of the treatment options to pursue. We were assured by the ENT and the Radiation Oncologist that both treatments were equally successful. It was kind of scary, though, that each of them was recommending the other’s treatment. The ultimate decision came down to Jason not wanting to take the risk of not being able to speak well enough to remain a pilot. Of course now, we are wondering if we made the right choice.

It seemed to take forever to get started. Jason was having problems with getting lodging down in San Antonio, where he would have to stay for seven weeks, but he eventually got started on February 5th. It was a tough time on all of us. Luckily he was able to come home on weekends, but he was hiding how tired he was and that just compounded the problems. We slowly adjusted to the change in our lives. We even took advantage of the situation and were able to move into a TLF at Randolph Air Force Base during spring break. The boys and I were able to spend a week with Jason and did some fun things in San Antonio. We couldn’t do too much because it would wear Jason out, but he was able to take a nap most days and the kids were good not to bother him. 

During the last two weeks of treatment, Jason did not feel well enough to make the five hour drive back to Abilene on the weekends, but luckily that was when we had planned for Grandma to come visit. She and I worked night and day to get the house ready for Jason to come home. I was so grateful for the help. On the weekend before Jason was set to come home, Grandma Deb, the boys and I drove down to San Antonio so I would be able to drive Jason home. 

When we got back into an area that had cell phone coverage, I noticed that I had a message from Jason. He said that he had just got back from the emergency room because his arm that had the PICC line in had been hurting throughout the night and he had a fever and chills. They had taken out the PICC line and given him antibiotics and sent him home. They said they would call when the labs came back. He had been in the emergency room from five in the morning until afternoon and he also had two finals for classes he was taking for his Master’s degree due that day. He eventually got the papers finished and was glad to have these final two classes over.

Over the next couple of days I did my best to take care of him and let him rest. By Wednesday, the final day of his radiation treatment, he was doing much better. He was in with the nurses receiving the Amifostine they were giving him to protect his salivary glands when he got a call from the doctor who had seen him in the ER. He was told that they needed to admit him to the hospital because he had an infection in his blood. After the radiation treatment we headed back to the emergency room.

When he got there, they put him in a room where Harrison and I were with him, but soon they came and told him he needed to go into an isolation room because he probably had MRSA. The nurses all treated him like he had the plague. When I tried to walk into the room with Harrison, the nurses tried to stop me. I told them I had been sleeping in the bed with him for the last three days and that I would take the chance. Eventually they determined that he did not of MRSA, but MSSA, which meant the staff infection wasn’t resistant to antibiotics, but rather sensitive to them. Either way, he was confined to the hospital once again, even though he felt perfectly fine.

We kept getting the run around from the various doctors that came to check on him. It seemed like every time a new doctor came in, they increased his stay time another day. They wanted to do a trans-esophageal echo cardio gram to check if the staff infection had settled in his heart, but since he had just had so much radiation to the area, they decided against it. Instead they decided to treat him as if it had infected the heart valve and put him on I.V. antibiotics for a month. This would involve him getting another PICC line and having to carry a pump around with him the entire time.

Over the next month, the home health nurse struggled to keep the site of the new PICC line from blistering and getting infected again. Jason was having some sort of allergic reaction and we thought it was to the dressing they were using to cover the site. We now know it wasn’t the adhesive, but the Chloroprep they were using to clean the site that he is allergic to. 

The next month was pretty miserable. In addition to not being able to taste anything, the constant smell of antibiotics made Jason pretty miserable. Everything he would eat tasted like those antibiotics smelled. He eventually got off the antibiotics and his sense of taste gradually returned. He remembers distinctly that the last thing he was unable to taste was maple syrup, but that too came back. At this point, we thought this battle was over once and for all and were ready to get on with our lives.

In June, Grandma Deb treated us all to a fun trip to Disneyland and a relaxing stay at a beautiful resort in San Diego. It was so much fun to be together with all of Jason’s brothers and their families. Jason and I were also coming up on our tenth anniversary and we had always talked about taking a special trip to celebrate. Jason asked me where I wanted to go and I told him to just surprise me. He did a good job. We left the kids with Grandma and headed to the airport in Salt Lake City. He wouldn’t let me listen to the ticket agents and made me wear headphones at the gates and not look to see where we were going. When we got on the plane I received my first of many surprises. Jason had sprung for first class seats! I really didn’t know life could be so good.

The first leg of the trip took us back to Dallas and I wondered why we were back there. We soon got on another plane however and headed off to our final destination. Jason spoke with the flight attendants and let them know that our final destination was a surprise so every time they would make an announcement, they would give me a warning so I could cover my ears. They even went so far as to say “Welcome to Costa Rica,” as we were getting off the plane. I said “See, I knew we were going to Costa Rica!” That is why I was initially confused when I heard the Jamaican accents from the security guards in the terminal. We spent the next week at the beautiful Couples Swept Away Resort in Jamaica. We had the time of our lives. I was able to relax and do things I never thought I would do, like snorkeling and sailing.

A couple of weeks after we got back from the trip, Dylan got baptized in the same place he had been blessed eight years earlier. At this time I was having some medical issues that were bothering me and we were also a little stressed from the drive back from Utah, but we felt like the worst was behind us, but that all came to a crashing halt one day after we returned home.

A series of bad circumstances and events led to a tragic accident in which Harrison drowned in our bathtub. I will never forget the feel of Harrison’s limp lifeless body flopping in my arms as I ran outside and screamed for help. I started doing CPR and my neighbor came over with her phone and called 911. My screams had also caught the attention of two Vivident salesmen who were down the street. Luckily one of them had training as an EMT and was able to help continue the CPR. The paramedics from the fire department arrived only a few minutes later, but to me it seemed like an eternity. Jason got back from the store just as they drilled a hole in Harrison’s shin to put in an IV. At that point I heard the most wonderful cry I have ever heard in my life. I was so relieved, but when we got to the emergency room and I was unable to go in with him, I started to panic again.

They came out and told us he was still breathing, but they wanted to life flight him to Cooks Children’s Hospital in Ft. Worth, I came unglued. I felt like it must be a bad dream and that I was going to wake up at any moment. The room was filled with doctors, nurses, paramedics and flight crew and all of them looked as scared and uncertain as I felt. We had called our bishop and before they loaded Harrison into the helicopter, he and Jason were able to give our baby a blessing. Jason blessed him that he would make a full recovery and that the doctors would be guided in their course of treatment. Despite the comfort that came from the blessing, I still had a bad feeling about Harrison going with this crew, but I didn’t have a choice.

I was so blessed to have neighbors and friends that immediately took my other boys into their loving homes. For Jason and me, the two and a half hour drive to Ft. Worth was the longest of our lives. We had been waiting for a text from one of the flight nurses who said he would text us as soon as they landed and we wondered why it was taking so long for them to get a hold of us. We got the text just shortly before we got to the hospital saying they had made it. Jason dropped me off at the front and went to park the car. I’m glad that I waited for him before I went in.

When we got to the room, we couldn’t believe our eyes. Our sweet little boy was hooked to all kinds of tubes and wires. It was horrifying, but it was even worse when the Dr. made sure to sit us down before he told us we had a very sick little boy. He seemed to read my mind because just at that moment I thought how Harrison had been breathing on his own earlier and wondered what happened. He said that as the helicopter was landing and they were getting him ready to move him,  the intubation tube had come out of his mouth and he had went into cardiac arrest. He said Harrison’s heart had stopped for ten minutes and they had done CPR and shocked him to get it started again.

He explained that they had put a hypothermic vest on Harrison and were keeping the room cool so they could lower his core temperature and hopefully keep his brain from swelling. We were scared, but had faith that this procedure would do what it was supposed to do and that our baby would be good as new again. After four days in the intensive care unit and two more at the hospital just to make sure, Harrison was home again, crawling around and laughing with his brothers. We felt so incredibly blessed. I actually remember saying we have had our share of trials for the year and nothing else could happen. I should have knocked on wood.

Maybe that’s why when Jason noticed another bump under his tongue we thought it was everything other than cancer. This was September and Jason was scheduled to go to Squadron Officer School for two months beginning on the 14th of October. He had to reschedule a follow up appointment for earlier in October so he could make the class. He met with his radiation oncologist who wanted a second opinion about the lump. He got Jason in to see an ENT, but not the one he had seen for the past three years. They also did an MRI. After all these appointments, the Doctors decided that the bump was only scar tissue and late radiation changes and nothing to be too concerned about. With a clean bill of health Jason left for Maxell Air Force Base for two months. We wonder now if he had seen his regular ENT if she would have insisted on a biopsy and we would now be in a different position, but we can’t go back and change the past.

Around Thanksgiving, Jason started complaining that his tongue was starting to hurt more and that it was getting harder to eat certain things. He was almost done with SOS and already had an appointment scheduled for after Christmas for a follow up visit, so he stayed and finished his training. On January fourth Jason had his follow up appointment with his regular ENT. Since the kids were out of school for Christmas break we had them with us in San Antonio. Jason went to the appointment by himself so I could keep all four boys from running wild. After the appointment, Jason said that the ENT wanted to do a biopsy the next day.

We had no idea how long the appointment would be, but didn’t think it would be that long, so Jason left me and the kids at the hotel. He had the tongue biopsy and then immediately got sent to get a fine needle aspiration (FNA) on a lymph node in his neck. Had he not come back seven hours later than I thought with a look of deep sadness and pain on his face, I might have complained. He told me that the Interventional Radiologist doing the FNA had said that it didn’t look good to him. I remember feeling like my heart stopped beating, but I immediately said “Well, he didn’t say that it was cancer.”

I held it together for the kids, but woke up in the middle of the night sobbing. Jason held me in his arms and tried to reassure me that it would all be ok, but he didn’t sound as certain as I would have liked. We tried not to think about it, but it was almost impossible. It was the first time there was a biopsy that I was scared to have final results from. I should have know when that next  weekend Jason was acting very different and talking like he was certain it was cancer.

I went to lunch with my friends the next Monday as happy as can be, feeling like things were going to be ok. When Jason came home from work that night, I started asking too many questions. He finally broke down and told me that the results from the FNA had come back and that there was cancer in his lymph node. He had heard the results on Friday, but wanted to wait until the tongue biopsy results were back as well before he told my anything. I kind of already knew, but was trying to deceive myself and think that if I didn’t know then it wouldn’t be real. I was devastated, but again tried to hold it together for the kids.

The next day was Tuesday and I had take Kellen to Mother’s Day Out. Shortly after I got home, Jason came home from work. It was a little unusual since it was only about 10:00 in the morning. I asked him what he was doing home, but the look on his face said it all. He had received the results of the tongue biopsy and it was also bad news. Jason had prepared himself for the possibility of a partial glosectomy and a neck dissection, where they would remove the cancerous part of his tongue and reconstruct it with a flap of skin from his forearm and also take out all the lymph nodes in the left side of his neck. He knew it would be a struggle, but was also prepared for that battle. He was completely unprepared when the surgeon told him the only surgical option was a complete glosectomy, where they would take out his entire tongue and he would have a trach and a feeding tube for the rest of his life. The other option they gave him at the time was palliative chemo therapy. That meant they couldn’t cure it, but just make him comfortable while he died.

We spent the rest of the day holding each other and crying and repeating that he was strong and he would survive, even though both of us had our doubts. I said things Jason didn’t need to hear like, “I can’t live without you. My father died when I was Kellen’s age, how can this be happening?” I was a mess, I couldn’t stop sobbing. When the boys came home, I hid it as well as I could. Jason stayed home from work for the rest of the week. We talked a lot about our options and what we would do if he died. We agreed that I would move back to Utah where the kids would have the support and care of his family and friends. I knew that if the boys could be raised in the same community and school that Jason had, that maybe they could turn out as wonderful as he is.

They got us in for another appointment down in San Antonio to discuss our options. What little hope we had was dashed after talking to the oncologist. He said that if we didn’t do the surgery and radiation was off the table that the chemo would just delay the inevitable and that Jason would be dead within a year. We asked him about the chemo therapy trial that our ENT was trying to get us into at Cancer Therapy Research Center (CTRC), associated with the University of Texas San Antonio. He told us that it too was not curative. I asked him if there was a trial that was curative and he said that there was one at Baylor and left it at that. I keep kicking myself that at the moment I didn’t say “WELL CAN YOU GET HIM INTO THAT TRIAL?” We left the appointment hoping we wouldn’t have to return there for strictly palliative care.

We went to lunch and decided to go shopping afterwards. I started looking at dresses that I would wear to his funeral. We even saw a sign in the hall of the mall that said, “This is the end of the line.” Jason had me take a picture of him next to the sign. This was a strange situation for us to be in. We were trying to accept this fate and almost laugh at it. We then headed back to the hospital to meet with the ENT for another appointment. As we entered San Antonio Military Medical Center (SAMMC), we noticed a large group of people walking towards us. Jason immediately noticed the two star general, but I noticed Governor Rick Perry.

I went up to him and shook his hand, introduced myself and told him why we were there. I told him that the oncologist had just told us that Jason was going to die and then immediately began sobbing. He embraced me and told me that he would help us out and that it wasn’t going to happen. He told us how he used to live in Abilene and had been a C-130 pilot as well. He had one of his aides take down or phone numbers and said he would have his friend who is on the board of regents at MD Anderson, one of the top cancer hospitals in the country, call us. We then went to the appointment with the ENT.

The ENT told us that the oncologist was young and somewhat inexperienced that she had made the appointment with him as a formality since he was part of the team at SAMMC, but she really wanted us to talk with the doctor running the chemo trial at CTRC. We tried to have faith in her words, but couldn’t get past what we had heard earlier that day. They also scheduled Jason for a PET scan to make sure it hadn’t spread to his lungs or elsewhere. We waited two weeks for the results for the scan to come back. During that time it was a continuous dialogue about how he could be cured or what the family would do if he died.

Jason was also doing research on the internet, literally grasping at straws for something that could cure him. He found a trail run by Baylor University that he thought was the one the oncologist was talking about. It was run out of Houston and used nano-particles of gold that would be injected into the body and then stick in the tumor. The doctors would then use a laser to heat up these particles and kill the tumor, but leave the normal tissue intact. It seemed like a great option in theory, but there were a lot of factors that had to be considered. We gave them a call and they wanted to have copies of all his medical records and the latest PET scan.

We took another trip to San Antonio to meet with the doctor at CTRC running the chemo trial. The thing we didn’t like about this option is that there was only a 50% chance of getting the experimental drug. If Jason didn’t get the drug it would be just like taking the palliative chemo therapy. Those were odds we weren’t willing to take. Even though the doctor said he had seen complete responses on the trial, it still would mean that Jason would have to be on chemo for the rest of his life. We still couldn’t get over what the other oncologist had told us and we felt like the other trial would be our best option. We told this doctor we would think about his trial and then get back to him.

After we got home, Jason’s ENT found out we were thinking about the nano-particle trial and she wanted us to talk with her boss at UT SA who had actually enrolled and treated patients with the same trial. This doctor, who was the head of Otolaryngology at UT SA, called Jason and had a very honest conversation with him. He said that, in his opinion, the nano-particle treatment didn’t really do anything and cautioned us against wasting our time pursing it. He also said that the chemo trial was not curative either and encouraged us to find a trial that involved radiation, or go with the surgery. He told Jason to look at it this way; either the cancer would take his tongue and possibly his life or he could have a surgeon take the tongue and possibly save his life.

We were pretty upset since we believed that the nano-particle trial was the answer we were looking for, but Jason decided to do what the doctor had advised. He started looking at other clinical trials, specifically ones that involved radiation. We were under the impression that radiation was off the table since he had just completed a round less than a year ago. He found a trial that was being offered by UT Southwestern Medical Center in Dallas and also by; you guessed it, Baylor out of Dallas. The difference between the clinical trial and other types of treatments is they are able to take more risks during the clinical trial.

Jason read the requirements for the trial and it seemed like he met all of them. This trial would involve chemo therapy combined with re-irradiation. Jason had me call the contact listed on the clinical trial website. After a brief conversation she asked us if we could meet with the Doctor doing the trial the next day. We were thrilled that we could get an appointment so quickly. This appointment went like every other appointment, except they had none of our medical records. The difference is this time I had a four inch thick ream of paper on my lap that contained all of Jason’s lab reports, radiology reports and every other medical record he had ever had.

The doctors left the room to discuss whether or not they though he would be a good candidate for the trial. When they came back in, I started shaking. I knew this was our last shot. If Jason could not get into this trial he would have to do the surgery. When the doctor first started to talk to us, I thought that was what he was recommending, but that wasn’t it at all. He just wanted us to know what all of our options were. He said that Jason would be a good candidate for the trial, but still wanted us to speak with the ENT at UT Southwestern.

This appointment didn’t come as quickly, but it actually worked out better because they had also recommend that Jason get a feeding tube. We were able to get it placed the next week in Abilene, but it took longer to heal than Jason had initially thought it should. Jason was having a lot of pain and was unable to even sit for long periods of time. He spent a few days in bed, but eventually got up and about. We had the meeting with the ENT in Dallas and also met with their oncologist. This was about six days after Jason had the feeding tube put in and when we got home for the appointments, Jason took a shower. When he got out, the opening around the tube was oozing puss and blood and was really painful. Jason got dressed and drove himself to the emergency room.

I felt bad that I couldn’t go with him, but all the kids were asleep. I felt some relief when he texted me and said he felt better after all the puss had drained out. He said they were just going to give him antibiotics and send him home. The next day he went back to the surgeon who had put the tube in. The problem was the clamp holding it against his stomach was too tight. He simply loosened it a bit and told Jason to call if it didn’t get better in the next couple of days. He also told him to alternate cleaning the area with hydrogen peroxide and vinegar and to also blow dry the area three times a day.

The next couple of days were spent waiting. We then got a call from the radiation oncologist at UT Southwestern saying that they wanted to do another MRI as well as another PET scan at their hospital since the scans they received from SAMMC were not very clear. Of course we were upset about the delay and thought this would push back the start date for the trial. We know that they wanted these scans just to make sure the cancer had not spread further and cause Jason undo suffering if there was nothing they could do. 

Waiting for the results of the scan was agonizing, but two days later we received a call from the secretary wondering if we could move the start date for treatment up a week. We were ecstatic. Obviously this meant the PET had come back good, but I wanted the Dr. to call us anyway. We had a great three day weekend with the boys and got everything ready to go. The plan was to do one round of chemo and then a week later start weekly chemo and daily radiation for the next six weeks. Before the first round of chemo, we met with the oncologist again and he explained the risks to us one more time. Of course by now we were intimately familiar with them and just wanted to get started. He wanted us to also realize that Jason needed to stay out of sunlight at all costs and that eventually he would need powerful narcotics for the pain. We accepted these challenges and got ready for the first round of treatment. Jason got hooked up to the IV and let the chemo start to do its work. 

I sat there and started writing this story. 

I wish that I had been able to finish it then, but it became a much bigger project than I had anticipated. 

I appreciate you sticking it out reading through this. 

There are so many people I want to thank and I don’t know where to begin. 

I promise on my next post to list everyone who has helped us and what they have done.

 I want everyone to know that we wouldn’t be where we are without all your support. 

Please leave any comments if you have questions. 

Thanks for your loving support.

Love, Heather