Prairie Wife of the Week March 20, 2015
Posted March 20, 2015 by Prairie Wife - 3 comments
A word of caution to our readers: This week’s interview is an open and honest conversation with a mother whose son lost his battle with Cancer. Please read at your own discretion and know that the purpose of this interview is to provide support to families who have experienced their own loss. It is also intended to offer education and support to those of us that wish to help friends or family members who have experienced a similar loss.
This week’s Prairie Wife is one of the strongest women I know. She has experienced every parent’s worst nightmare and come away from it with a stronger marriage, her faith in tact, and a true understanding of what parenting is all about. While Jacque and I did not become close until a few years after her son Dalton passed away from cancer, The Cowboy and I were on the sidelines praying for them and supporting them in any way we could during their battle.. One of my favorite memories of Dalton is when Cowboy J come over to his house to play. He was an energetic toddler and literally ran in circles around a pole in Dalton’s basement. Dalton just sat in his mom’s lap with his big sweet eyes and looked at her like “What on Earth have you brought into my house?!” I am so honored that Jacque was willing to share Dalton’s story with our readers. It is my hope that after you read this interview you will have a new understanding of what a parents love is truly about, and feel prepared to help any friends or family member’s that are fighting childhood cancer. I will end my introduction with a quote I saw on Facebook just this week. “I talked about my child all the time when they were here with me, why would I stop now just because they are in heaven.”
Prairie Wife (PW): First tell us a little bit about your family.
Jacque (J): My husband and I both were both born and raised in Cheyenne, WY. We attended the same high school, graduated within two years of one another and even knew some of the same people but we didn’t meet until my junior year of college. A fateful blind date. We’ve now been together almost 14 years, married 11 of those, and we are still living in Cheyenne with our 2 girls
PW: You and I first became friends when we both had our first children a few weeks apart. There were so many things that overwhelmed me about becoming a mother…did you feel the same way?
J: Becoming a mother I remember being more excited than overwhelmed at first. Looking back now I see just how naïve I was about so many things. When I was pregnant with Dalton I wasn’t the mom-to-be that read all books and planned out every detail of my baby’s impending birth. I just had fun picking out baby clothes, decorating the nursery and buying all the peraphnalia that you think you’ll need and then end up not even using. I just flat out did not worry about a thing! It never occurred to me once to ever factor in anything to worry about. So my naivety fueled my belief system that you grow up, get married, start a family and live happily ever after.
PW: When Dalton was 10 months old you noticed a lump on the side of his head. What did you do?
J: When Dalton was 10 months old I noticed a bump on his left temple. We were living with my parents at the time. We had sold our house in town and my husband was in the process of starting construction on a house north of Cheyenne. I was staying at home with Dalton during the day while my parents and my husband went to work. One day I got out of the shower and walked into the bedroom and saw that Dalton had woke up from his nap and was standing up in his crib. He had that sweet little grin on his face looking at me, then he turned his head just so and I saw the bump. At the time the bump wasn’t noticeable by looking at him straight on. He had to turn his head just the right way to really notice it. It wasn’t red or bruised, just a small bump. At the time I saw it I figured that he had just knocked his head on something because he for the past few months he had been crawling all over and had bruises all over his legs. I had no reason think it was anything more than a little warrior wound.
PW: Eventually it was discovered that Dalton had cancer. I can’t even imagine what you and your husband were feeling, can you share a little bit about those first few weeks after diagnosis?
J: Within two weeks of discovering the bump our entire world as we knew it changed forever. Dalton was diagnosed with Acute Myeloid Leukemia (AML). From there it was a whirlwind of doctor appointments, first to Fort Collins and then to Denver. It was bad news on top of worse news every time we turned around. I still get the same sickening feeling remembering the looks on the doctor’s faces as we went from once specialist to the next. It was one pitiful look after another that we would get as learned of our diagnosis.
PW: What were some things that were the most helpful for your family as you decided on Dalton’s treatment and began it?
J: The thing that was the most helpful to us not only in the beginning but throughout our entire treatment process was undoubtedly the support of our families and friends. I could never have imagined what was in store for us in the coming days, weeks and months. All I know is that I don’t know how we ever would have gotten through it without the support system that we had from day one. The day we went down to Denver Children’s Hospital and were told that we were battling AML we were immediately admitted to the hospital. We didn’t know for how long or even what the treatment plan would be, and we wouldn’t find this out for another week. All we knew was that our new home would be a small, dreary hospital room with a metal crib and a small cot as the central focus of the room.
Immediately our families swarmed to the hospital. Most of them traveling down from Cheyenne. But thankfully we also had family in Denver. I had aunts, uncles and cousins living in Denver at the time. They took care of us like you wouldn’t believe. We were visited everyday by someone which helped to greatly break up the monotony of the long hospital stays. Someone would bring us either lunch or dinner every day and they would stay and eat with us. We looked forward to these visits so much, not only was it nice to not have a change from hospital food, but for a little while every day we had a small sense of normalcy just by sharing in a good meal with family and friends.
PW: I know that you spent most of the time with Dalton in the hospital, as your husband had to continue working. What was a typical week like for you?
J: We had to get use to a “new normal”. That’s what one of Dalton’s main nurses had told us. Our happy little life as we knew it was gone, this is what our life was now and somehow someway we had to find a level of comfort in our “new normal”. That comfort would not come for quite a while, but when it did it came in the form of a routine. After the first round of chemo Dalton’s bump disappeared, he was a “rapid responder” and that is always a good sign when you’re dealing with cancer treatment. The first two or three rounds would be the toughest in our treatment plan, and believe me they were. Once we were over those hurdles we settled into a better and more predictable routine. I was at the hospital with Dalton 24/7 from day one, he was never left alone, and I get comfort from remembering that to this day.
He would have his treatment days which would last two or three days then we would wait for his counts (white blood cells) to drop, and that would take a few more days. Once they dropped we then had to wait for them to come back up and that could take anywhere from 15-28 days. After his counts returned to a normal level we were able to come back to Cheyenne for about a week. Then we would return for the next round and start all over again. Our day at the hospital when treatment days were over would begin at around 7am, the nurses would bring in a small tray of daily medication that Dalton would have to take. It could be anywhere from two to five different medications that we had to get down him. But that little man was a trooper and never gave me a fit on taking them, he just did it. At around 8:00 or 8:30 the doctors made their rounds. They would come in and chat with us then move on to the next room. From this point of the day, as long as Dalton didn’t spike a fever, we were free to roam the hospital grounds freely and we would. Anytime during the day when we were back in our room the nurses would do vitals on him, which would be checking his blood pressure and temperature. If Dalton did have a fever we would have to be in isolation which meant he could not leave his room. Our longest isolation stay was after our first round of chemo and it was about 23 days.
During all of this time my husband was still working and still trying to keep up with the demands of being the general contractor on our new house. He had his obligations at his job and then deadlines to meet with the bank that held our construction loan. Now his baby and wife were 100 miles away and this poor guy was trying to be everywhere. During the week Darrell would stay in Cheyenne and go to work from 7-4 then we would come to the house and work on it until about 1 in the morning every single day. On Fridays he would get off work at 4 and drive to Denver to spend the weekend with us, and then leave at 4:30 or 5:00 on Monday morning to be back in Cheyenne at work by 7. My mom was able to come and stay with us during the week at the hospital. She would spend the day with us and slept at my aunt and uncles at night, then she would come home on the weekends while Darrell was down with us at the hospital. And this was our routine for about 7 months. But treatment was working and Dalton was in remission and we were ready to this forever if it would save him.
PW: I remember that Dalton had his own DVD player and loved to play with stickers, anything else that helped the time pass for both you and him?
J: When we were first diagnosed with cancer it was incredible to see just the extent that people would go to help. Dalton was given so much stuff in those first few weeks that it didn’t take long to outgrow the hospital room and we were constantly sending thing home with Darrell, because we were allowed only so many items on the room for safety reasons. One of his most prized possession was a DVD player that came in a backpack full of other toys as well. He decorated it with stickers and made it his own. He loved watching his cartoons, especially his favorite all time movie “Finding Nemo”. He loved coloring and we did a lot of that. Today some of his most fabulous art work is framed in our living room. We would read books and go for wagons rides. Denver Children’s Hospital has the red wagon program that offers a wagons to their patient to use and get around the hospital in. After our first round Dalton’s grandparent got him his very own John Deere wagon. It was beautiful and he loved it. We would make a comfy set up in the wagon with is blankets and stuffed animals. He was king in that little wagon and we pulled him miles all over the hospital. As the days started warming up and as long as he was feeling good I would take him for walks around the little neighborhood surrounding the hospital. Those were good days and memories for me, I remember them well because again it was a small sense of normalcy that peeked in. I remember thinking as I was pulling him in the wagon that I was just a normal mom with her baby out for a walk and enjoying the day. There was no cancer on those walks.
PW: Being a caregiver for a sick child can be both emotionally and physically draining. What did you do for support and to take care of yourself and get those much needed breaks?
J: Yes, it goes without saying that being a caregiver to child is the most emotionally and physically draining experience you can go through. Again I have to credit our supportive family for getting us through it. I would be at the hospital every day and night as I said earlier. But there would be at least one afternoon a week that I would take, because my mom or Darrell would stay with Dalton, and I would leave the hospital. I would usually go and spend a couple hours at the mall or just walking around the Cherry Creek area. A couple of times my aunt took me for a mani/pedi and that was great. So family again played a big part in taking care of us, but we couldn’t have gotten through it without the nurses and doctors that Dalton had as well.
I will be honest and say that I liked only two of his doctors. One today is still a very good friend of mine even though she now lives in Connecticut we stay in close contact. Dalton also had amazing nurses. He was assigned two main nurses (Deb and Rachel),and let me tell you that they couldn’t have been better, like two mama bears they protected him and us from a lot of the negative things that can needlessly occur during extended hospital stays. They reminded us that we had to be an advocate for our son and ourselves. We had to learn everything that we could to protect and care for Dalton.
For instance, Dalton’s chemo was administered through a system called a Broviac, which is a catheter or central line that was implanted in Dalton’s chest the first night we were admitted. This is a common way to administer such treatments as chemo in children, so that they don’t have to continually be poked and prodded for medicines or blood draws. We had to learn to clean and care for this, which included learning to flush the lines with saline and heparin twice a day even when he was home. Our nurses explained how importance it was for us to learn this and not be afraid of this line coming out of his chest. And we learned how to do it and it became second nature. We watched and made sure that no one sick came around, I swear after a while we could hear a sneeze or a cough a half a block away. We made sure that hands were washed and often by not only anyone visiting but any unfamiliar hospital staff as well. Dalton had quite a few amazing nurses and the ones we didn’t like we spoke up and let it be known that we didn’t want them near our baby. If they were unpleasant or negative in any way that had no business near our boy. By teaching us this and reinforcing our sense of advocacy this strengthened our emotional well being and we could rest easy knowing we are doing everything in our power to save our son.
PW: What about your marriage, how did you and your husband keep connected during this stressful time?
J: One of the things I am most proud of in my life is the fact that during this entire time my husband and I never fought about Dalton, his treatment, what we should do, or why something this horrible could happen to our family. What is amazing is that fact that it didn’t take any effort on our part to keep from fighting. We were both on the same page from day one. We were here to do what we had to do to save our boy, but we were not here to watch him suffer. As long as we had a fighting chance we would do it. But if came down to having to let him go or continually watch him suffer through excruciating treatments where there is never a guarantee of results, we would let him go before putting him through all of that.
There are no words to describe how difficult it is for parents to get to that realization, and for us to have been able to understand that from day one was remarkable to me. And throughout this whole journey I can say that my husband and I got through it because we were a good balance for one another. There were days when I was so down I could barely breathe with the overwhelming reality of everything, and on those days he was up and in a good place to handle what needed to be done. On the days he was down then I would be ready to take on the fight. We didn’t have to work at this, it just happened and I am thankful every day that it did. It was convincing me there was a higher power that may be preparing us for what lay in store for us. During one of the most difficult experience two people can go through our marriage was tested and we didn’t even realize it. I think what helped us to get through this was that we allowed each other to feel whatever emotions we needed to feel. Whether it was anger, resentment, despair we would allow each other to go through it, and we gave each other space and time they needed to grieve a while.
PW: Most of us are aware that cancer treatment is expensive but unless you’ve been through it the concept is vague. Can you give us a realistic look at the cost of cancer treatment for a child?
J: The price for cancer treatment is astronomical. We couldn’t believe it when the bills started coming in, but at the time we had very good insurance and to be honest we were going to pay whatever needed to be paid to get Dalton better, we didn’t care. When it was all said and done we had exceeded our one million dollar policy and we were well into our supplemental insurance plan. We will be forever thankful to our social worker at the hospital who informed us early on to get supplement insurance. We never would have imagined it could be that expensive. Another saving grace for us was a foundation out of Casper, WY who provided incredible monetary support to us throughout our entire hospitalization. The foundation is Jason’s Friends. Lisa Eades is the president/founder of this incredible foundation that provides support to families whose children have cancer. This foundation is in honor of her son Jason, who lost his battle to cancer as well. Jason’s friends provided us with meal coupons to use at the hospital cafeteria the entire time that we were there. They also helped cover our mortgage payment once my husband took a leave from work to be with Dalton. I cannot begin to express our gratitude and appreciation to this incredible foundation. Their generosity and support allowed us to be where we needed to be, when we needed to be there, and they gave the time with our son during a crucial time.
PW: When Dalton had breaks from treatment and was able to come home what did you like to do as a family?
J: When Dalton was able to come home we just stayed home. We enjoyed the everyday amenities that we take for granted when we are home every day. Taking a shower or just using the bathroom at your leisure. Having a washer and dryer. Sleeping in your own bed. Going to a refrigerator and seeing food you like to eat. But we would also try and take him places, but since we didn’t want to expose him to large crowds we would take him up to the mountains for the day. Or we would go fishing and walk around outside on my family’s ranch. It was never scary for us to have him outside the hospital environment. It may have been because we were so use to being very careful and aware of our surroundings when it came to exposing him. I think most of the time we more worried that he might get something at the hospital.
PW: Despite Dalton and your family’s strength in meeting Cancer head on, it was discovered that the treatment wasn’t working. I know it’s hard but can you tell us how you made the decision for when it was time to stop treatment and bring Dalton home to be with his family?
J: Despite all of the efforts and Dalton’s “rapid response” to the treatments, our son relapsed in the fall of 2007. Undeniably a relapse is so much harder to hear than the initial diagnosis. You’re hit hard with the reality that you are going into this fight once again, but lacking in one very important component that you had the first time around, hope. Hope is an incredible powerful thing when you’re going through all of this. At your lowest point hope will be this first thing you reach for. I had to come to terms again with the fact that the “new normal” we were adjusting to was now gone, and again we would have to find our new comfort zone. On top of this devastating news I had just found out that I was pregnant with our second child. How was I going to do this? That’s all I kept thinking. I was emotionally and physically spent. But we got it together and we started to get a game plan.
This time treatment would involve a more aggressive chemo and radiation. We tried it for a little over two months but it wasn’t working this time. So our remaining hope had to shift from hoping that we could save him to hoping that we could survive living without him. The only way I could even begin to grasp that idea of not having him was to take back some control. This entire time Darrell and I had no control over cancer, no one has control over it. Cancer comes into your life and you are at its mercy. Well the one thing we could control now was where we would take him, and where we would say good-bye to him. That wasn’t going to be in a hospital surrounded by strangers. Dalton was coming home to the house that his dad built and Darrell and I would be the ones that would be with him when the time came. And that is what we did. We said good-bye to Dalton on a peaceful November morning. Just Darrell and I, in his bed, in his room, in his house.
PW: Each person’s journey through grief is different; can you share some of what you did with our readers?
J: Our grieving process began the day that we were diagnosed and it continues to this day. I wish that I could say that after so long you don’t feel the pain or loss. It numbs a bit, but it’s always there. It’s your child that is gone, a part of you. We have continued living though, we haven’t shut down. We have two little girls that keep us hoping and we do all the things families do. But we miss him and think of him every single day, it’s our “new normal”. And a big part of it is that we still allow ourselves to feel those emotions whenever and whatever they may be, and that helps us to cope with the loss. And I think that by allowing ourselves to do that reminds us that we are still alive and we have keep going.
PW: What can family and friends do to support loved ones that have lost a child?
J: My husband and I are by nature very private people. This is the first time I have openly discussed our experience, and I only did it because a very special Prairie Wife asked me to. After Dalton died we were offered many opportunities to join support groups, but that’s not how we chose to deal with his passing. For us we just wanted time to ourselves, and I think anyone who really knew us understood this and they gave us our time that we needed. Grieving is different for everyone, and until it is happening there is no way to know how someone will want to handle it.
PW: You now have two beautiful daughters, what impact did your experience with Dalton have on how you currently parent?
J: Our experience with Dalton has put things in perspective for me as a parent. After you lose your child you remember every time you ever lost your patience with them or got upset over something silly. And that is when the guilt floods in. I worried that I would be over protective and under structured when it came to our girls. I didn’t want to lack in parenting skills because I was afraid of what could happen. I feel that I am a normal mom who deals with typical little kid issues and I handle them okay. I’m not going to write a child rearing book anytime soon, but I feel that I get through the everyday dramas like any other parent. Then there are days when I am ready to pull out my hair if I hear our girls call for mama one more time. But then it hits me that I can pinpoint the exact moment when I realized I wouldn’t hear Dalton say mama again, and it makes me realize just how sweet a sound it can be after all. Cancer hasn’t frightened us from living our life, and that in itself is a small victory. I am not naïve anymore to think that cancer couldn’t happen again to someone close. What is has done is taught us a lesson in appreciation that we may not have learned otherwise. I think the one big impact Dalton’s journey had for us as parents is that we don’t sweat the small stuff. And we try to remember that kids need to be kids, and we should appreciate them for that ability. That carefree appreciation that little kids have for life. Even the kids in the cancer wing would always have a smile on their face. When it comes down to it, we have already gone through one of the most difficult things a parent can go through, everything else is fixable.
PW: One of the things I love about visiting your house is seeing all the pictures of Dalton. What else do you do to keep his memory alive for you and your family?
J: I guess another way you could say this experience has perhaps altered my parenting style is that I am incredibly honest with my kids when it comes to death and any questions they have about it. From the time they are tiny we tell them about their big brother Dalton. And we tell them he is in heaven and that he is now their angel. My youngest, who is 3, talks about him a lot and even dials him on her cell phone and talks to him while looking at his picture. We like that they know who he was, and that they know they had a brother. My oldest, who is 7, asks questions about Dalton and about what happened to him. I feel comfortable telling her about it and I don’t try to protect her from knowing that these things happen. Dalton is still very much a part of our family, we still have a birthday dinner for him with his favorite foods. We find comfort in telling stories of him and funny little things he did. This is part of our life now and this is how we get through it. I believe that people have to do what they need to grieve and cope. I hope that when it’s all said and done Dalton would be as proud of us and we are of him.
PW: Any last Prairie Wife words of wisdom?
J: Wait and hope for and expect the Lord; be brave and of good courage and let your heart be stout and enduring. Yes, wait for and hope for and expect the Lord. Psalm 27:14
Please feel free to leave any comments below, Jacque will be checking them.
If you wish to offer support to Jason’s Friends and help a family battling cancer please click this link.
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