We were definitely ready for a fresh start to a new year after what had transpired in 2013. We had had so many surprises with unknown illnesses, new procedures and emergency surgeries that we thought for sure this year would have to be better. We have always started the years with hopes that things will be better than the previous, and this year was no different. We also know that each year has had its own trials and hardships, but we knew that God was always with us and was in control of things. We have learned that no matter how hard the battles would be He would never leave us to fight our battles alone.
We started the year off well and we celebrated Reeds birthday without any problems. But only a few days later both of the boys came down with the Flu. They were both pretty sick, but Camden especially got hit hard. He wasn’t able to keep any fluids down, and just continued to vomit. We felt helpless as we held him and tried to calm him down. We called his doctor and he told us that if Camden was not able to keep any liquid down within 24 hours then we needed to take him into the ER.
We kept trying but he wasn’t able to keep anything down and when he started to become lethargic we took him into the ER. They first tried to give him some anti-nausea medications and tried some fluids but he continued throwing up. They finally decided to give him an IV and started giving him fluids. Even though he wasn’t happy about the IV, after a while he started to come around and he started feeling a little better.
A few days later Reed started having an increase in abdominal pain and shortness of breath while at work. It became so bad that Reed had a nurse he worked with check him out and listen to his lungs. She said that she couldn’t hear much air moving and told Reed to get to the ER. Reed checked in and was later met by Stacie and her dad as well as Reed’s dad. They started to run tests and did some lab work. It came back showing that his WBC was elevated and that there was some sort of infection happening. It also showed that Reed had become anemic.
Surprisingly, it also showed that Reed was just getting over an active case of mono. A CT of his abdomen and pelvis was taken and we were relieved when there were no signs of another colon rupture but something was starting to show up again. Because of the new findings Reed was referred to an internist. When Reed followed up with the Internist the doctor evaluated Reed and decided that there was something defiantly wrong and that we needed to figure it out quickly because, as he put it, “it’s just a matter of time before something bad happens.” He started to help get test and reports ready to send Reed down to Arizona to be seen at the Mayo Clinic.
The biggest hurdle was getting it covered by the insurance which required a lot of documentation from all of Reeds specialist as well as some other specialist that Reed had not yet seen. Stacie spent the next six weeks continuously on the phone talking to doctors’ offices, care managers, insurance representatives and the Mayo clinic.
But Reed wasn’t the only one trying to get approval for an evaluation. In November of 2013 Camden had some test done and was found to have abnormal IgG levels. His doctor ordered more testing done and they diagnosed him to have immunoglobulin deficiency. Because he continued to have a multitude of infections our ENT referred Camden to an Immunologist at Primary Children’s Hospital to have further testing done. Now the wait was over and Camden was finally able to see the specialist. The immunologist was interested in Camden’s case and, being involved with inherited disorders, he was also interested to know if it may be related to some of the problems seen in Stacie and Reed. He ordered some more lab work and referred Camden to a pediatric ENT to look into whether there was any differential diagnosis that would explained his recurring infections. He also offered to see us as a family later on down the road to see if there was a link between all of our problems. An appointment was made for Camden to see the ENT in March.
Meanwhile Camden was starting to complain about his teeth hurting more and was not eating very much which made us concerned. Last November we discovered that Camden had some spots on the back of his top four front teeth located in the center of each tooth. Stacie had taken Camden to a few different dentists to figure out what was going on with his teeth and if there could be any correlation between that and his immune deficiencies. One dentist was finally able to explain to us that the problem was a result of his severe acid reflux that he had as a baby. That was why the erosion was located in the middle of his teeth rather than near the base of it. We had scheduled a procedure at the end of December 2013 for Camden to have four root canals as well as his crowns put on. Unfortunately Camden came down with croup and the anesthesiologist felt it was unsafe to go through with it until Camden could be clear of any illness for at least one month. Camden came down with the flu in January which pushed back the procedure once again.
Since Camden was scheduled to see the Immunologist in mid-February the anesthesiologist wanted the immunologist to clear him to do the procedure. After evaluating Camden the Immunologist felt that Camden was healthy enough at this point to go through with a procedure to fix Camden’s teeth. So at the end of February Camden went in to have four root canals and his crowns put in. During the procedure the dentist discovered that all four of his teeth contained quite a bit of infection and treated it by injecting some antibiotics directly into the teeth as well as being put on an oral antibiotic. The doctor confirmed that the decay was due to the acid reflex Camden had as a baby and said that otherwise his teeth look good. He said Camden should do well with recovery and was able to go home after he woke up. Camden had done well with the procedure and, although it took him a little while to wake up afterwards, he did rather well with the recovery.
Two days after Camden’s procedure Reed went up to The Orthopedic Specialty Hospital (TOSH) to follow up on the MRI he had done on his hips in December which showed labral tears in both of his hips. Reed was having more pain and discomfort in his hips now and was glad he was finally getting them checked out. More x-rays were done and it was discovered that not only were there labral tears in both hips but Reed also had bilateral hip dysplasia and had some calcifications that had developed on his labrum. It was recommended that Reed try an intraarticular hip injection to see how his body would respond. The doctor was cautious because of Reeds’ complex medical history and wanted to wait until Reed was seen at the Mayo clinic before proceeding any further. If the injections did not improve Reeds hip pain and function then we would proceed with hip arthroscopy. Unfortunately the doctor explain that due to his bilateral hip dysplasia and labral tears Reed would eventually need total hip replacements in both hips later on down the road. The news was definitely upsetting to Reed and, with his recent decline in health, only made it harder to take.
One way Reed had been able to cope with his several back surgeries and other health problems was the hope that he would one day be able to be active again and play some sports with his boys and to dance with his wife. Having a total hip replacement on both hips meant that it may never be possible again. To this day, despite the many surgeries and illnesses he has had to endure, this is one of Reeds hardest struggles to deal with. Spending time playing with his boys had been something he was looking forward to when he knew he was going to be a dad. Reed wanted to get started with treatment right away and went in and had the hip injection. It seemed to help with the pain and was able to walk and sit a little easier with out as much pain.
In March Camden went to see an ENT, who had been referred to by the immunologist, to check into other possible causes for Camden’s frequent infections. Camden was coming down with croup almost every 3 weeks or so, despite our attempts to limit his exposure to others. The doctor retested Camden’s IgG levels again and found that they were still dropping. He wanted to scope Camden’s throat and airways to see if there were any structural problems that could be contributing to the frequent infections. He also wanted to bring in a GI doctor during the procedure so that Camden could have his stomach scope and to place a Bravo probe. The probe would help us determine if there was inflammation in his airways as a result of acid reflex. The ENT contacted the GI doctor to make sure that they both would be present at the same time to do Camden’s procedure. They worked out their schedules and Camden was scheduled for the procedure at Primary Children’s Hospital at the end of April.
With all of our families’ health problems and all of our doctor’s appointments we can easily overlook how it influences us, more importantly how it affected our boys. Our boys had been through so much themselves but having both parents struggling with health problems can be, and has been, overwhelming for them. But they have always been strong and have been able to adapt to the situations.
Payton decided that he wasn’t going to wait for someone else to figure out how to get his mom, dad and little brother better. He was going to figure it out himself and that is when he opened his very own clinic. He has always had a tender heart and has always looked after us to help us feel better. The truth was as soon as we saw his office and sign we did feel a little better!
The day of Camden’s procedure had finally come and we made our way up to the hospital. Usually they try to do little kids procedures as early as possible because they can’t have any food or drink 6 hours before. Unfortunately, because of the two doctor’s schedules, we were told to check in at 2 in the afternoon. Luckily it didn’t seem to bother Camden too much and he was pretty happy that he was able to play some video games while he waited to go in. He became a little concerned though when the anesthesiologist came in to meet him. Luckily, that didn’t last long especially when he got to pick out what car he wanted to drive into the operating room.
He chose a police car and happily drove himself alongside the anesthesiologist into the operating room where he happily greeted the nurses in the room. We went to get something to eat and waited in the waiting room anxiously for the Doctors to come in. We were relieved when the ENT doctor came in and let us know that the procedure had gone well. He said that there were some irregularities seen around Camden’s vocal cords and that he had some narrowing in his throat but that everything else was structurally okay. He said that they had taken some biopsies and would let us know when they got the results back. Then the GI Doctor came in and told us that he had seen some mild inflammation in his esophagus located near his stomach but that he wasn’t overly concerned at this time. He was able to place the Bravo probe in with very little problems and felt that Camden would just have to stay for 24 hours so that they could collect all the data.
We were grateful that everything went well and we were hoping and praying that this would give us more answers into what was causing Camden’s health problems. We still waited a while before we were allowed in to see Camden who was starting to stir a little. He had tolerated the procedure well but Camden had a harder time with waking up. He kept trying to pull at the tape and the line that ran down through his nose and into his stomach. The post-op nurse had called us back sooner than expected hoping that we could help calm Camden down and prevent him from getting a hold of the line or they would have to restrain his arms. That was absolutely the last thing we wanted because we knew that being restrained would upset him more than anything.
They gave him a little medication to try to calm him down but it wasn’t until Stacie climbed into bed with him and snuggled with him that he actually calmed down. With that being the magic touch they even had Stacie stay in the bed with him as the wheeled him to his room.
Once he was in his room and started to wake up it didn’t take long before cam got use to the tube being in his nose and the monitor he had to keep close to him. He was especially excited when he was finally able to eat and drink. The doctor told us that Camden would have a chest x-ray later that evening to make sure that the monitor was in the right place. Unfortunately things kept pushing back the time for the test and by the time he was taken back to x-ray it was about 11 pm. Poor Camden was so exhausted from the busy day that he struggled just to stay upright on the x-ray table. Late or not we were glad it was done because it was discovered that the tube was in the wrong place. They had to re-position it which also meant that Camden would have to stay an extra day in the hospital to insure that we could gather enough data to make the correct diagnosis.
Camden really handled it like a champ though and soon he became a favorite around the nurses’ station. He tolerated the stay even better when Stacie took him to the amazing play room that they have for the children staying in the hospital. He got to play bingo, play with lots of cool toys and got to take his picture next to some superheroes. His favorite part though was when big brother came to see him in his hospital room. He literally jumped out of his bed and nearly tackled Payton as he hugged him and did not let go of him for quite a long time. He handled everything better than we had expected and was extremely excited when he had some visitors.
He loved to tell everyone about ‘his’ hospital, show them around, introduce them to his new friends and showed them his cool blanket and items he got to bring home. After the full 24 hours with the tube in the right location Camden was able to come home with no further complications.
We were happy that Camden had done so well with his procedure and we started to turn out attention back to getting in to the Mayo Clinic. Stacie had also been referred to the Mayo Clinic for her ongoing health problems and our hope was to be able to go down at the same time to be evaluated. We were told that it could take several months to get an appointment, so we worked quickly on getting all of our records sent down to them.
We were relieved when we received a call from the Mayo Clinic to inform us that Reed had finally been accepted to be seen by several different specialists in Arizona. We were extremely excited that he was finally given a date to be evaluated by these doctors and knew that this was an answer to our prayers. Unfortunately our insurance didn’t yet see it that way and continued to delay approval for coverage at that point. The Mayo Clinic informed us that if we could not take the appointments they had scheduled for us in May, we would most likely have to wait until at least August to be seen.
It seemed like Reeds symptoms were getting worse every day and it broke Stacie’s heart. We knew that getting seen by the Mayo Clinic would be the best way to get answers.
Reed was a little more concerned about going down without knowing for sure if we were covered because he knew that it could put a huge financial burden on our family if we couldn’t get coverage. Stacie on the other hand felt that Reed desperately needed to be there no matter what the cost was. Reed was usually the one to take Stacie’s hand and convince her that everything was going to work out but this time it was Stacie who had to convince Reed of it. In order to get Reed to get down there sooner Stacie told the insurance that she would put her case on hold if they would just focus on getting Reed approved. So with that, and not going down without a fight, Stacie continued working nonstop collecting Reeds medical records from each of his doctors, talking with the Mayo Clinic and communicating with the insurance company on a daily basis. There was no way Stacie was going to take no for an answer and we were not going to give up. At this point we decided to go by faith and went ahead and scheduled the appointment. We had faith knowing it would work out exactly as it was supposed to…and it did!
While we were dealing with these hard decisions, Reed’s brothers, Brian and Mark (and their wives), had started talking about ways to better help out our little family. They were very concerned about the low point our health had ultimately gotten to and the costly steps that would need to be taken to get the proper care. They knew that we had been quietly doing our best at being self -sufficient rather than "burdening" others with our problems, and that we hadn’t been very open to sharing our struggles with others in the past, including with family. But as our challenges continued to grow and become more complex, particularly now, our need for other's help had become an absolute necessity. We were no longer able to walk our path alone as we had always tried to do. Our burden had now become too great for us to solely bear.
Brian and Mark knew they couldn’t stand on the sidelines anymore just watching and praying for us. They knew they had to take some sort of action to get us the help we needed; they had to find an answer to those prayers. They decided that the best way to get us help was to openly share our unique story with others and allow others to join us in our fight. So, Brian and Mark decided to create a simple awareness campaign and website where others could learn about all the struggles we have had to deal with over the years, as well as a place where others could donate to help us find the answers we were looking for.
They knew that the story had to come directly from us; it had to be a personal account of our journey so that our viewpoints, struggles, insights, feelings and intimate details could be accurately and adequately expressed. But, knowing it would be really hard for us to be so open about our struggles, Brian and Mark presented the idea to us in a loving, sincere way and shared with us some very compelling reasons as to why we should accept their offer to help and engage in sharing our story with the world. They explained that this was a way for us to move forward in dealing with the overwhelming burdens that our chronic health problems had brought. It was the next phase of our journey, and we needed the help of others to make it through this part.
We were surprised and extremely touched that they would take the time to create something like this for us and we were humbled that a chance to take control of our future had finally presented itself. We decided that now was the time for us to move forward in our lives and we hesitantly, but graciously accepted the chance to share our story. That is when ‘Tender Mercies 4 Tender Souls’ (focusing on our little family of 4) was born. They worked hard at quickly getting things put together so they could begin raising awareness before we went to the Mayo Clinic.
As we began to write our story we quickly realized that it would be harder to share with others than we had originally thought. We were sharing something so deeply personal, and at a time that was already very difficult for us, made us feel somewhat exposed and vulnerable to the scrutiny and even judgement of others. And where would we start? How would we start? Would sharing what we have been dealing with all these years come across as complaining? We had always been anxious about sharing our story to others because we felt that it would be overwhelming to others and that we would end up just pushing others away.
These types of feelings made it challenging for us to share our story. But, the hardest part about writing our story was when we discovered that, although our wounds had long since closed, we really hadn’t fully healed on the inside. We had been bracing ourselves against the raging storm for so long, without letting up, that we had not had a chance to reflect and deal with how it had truly affected us. We had become very good at hiding our pain and our grief with a smile and pretending that we were doing just fine. But the truth was that we weren’t doing well, and finally accepting it and acknowledging that we couldn’t do things on our own anymore without help was scary but very liberating. Our scars told a story of our pain and our suffering but they also stood as a reminder that, although we had faced several challenges, we were strong enough to survive every one of them; and we were determined enough to move forward with life.
We have often felt that enduring through our hardships would be well worth it if our experiences helped others get through their own struggles. It would, in a sense, give our suffering a purpose. With that in mind, our story would be about the struggles we have faced and how we were fighting to overcome them.
We could not believe just how quickly the word spread and the amount of response we had to it. Within a few days friends and family stepped forward to help us in our time of need. Words cannot describe just how humbling it was to have those who we had not seen for several years, and some we had never met, reach out to us and let us know and feel of their love and support. We were overwhelmed with the outpouring of support for our little family. Just as we thought that we had finally reached the point where there was no more hope, we witnessed an extraordinary miracle; a truly tender mercy. We were lifted up and inspired by so many of you to fight a little longer. As we read letters from others about how they were praying for us and how they were behind us in our fight, we felt compelled to push on.
The generosity of so many, in so many different ways, will be forever remembered as the moment we knew we could fight back. We are beyond grateful for all those who gave so freely and so willingly to help us overcome one of the hardest and most challenging times of our lives.
We had been given the chance to move forward in our lives and we were excited that the day had finally come to leave for the Mayo Clinic. It turned out to be even crazier than what we had expected. We remember it like it was yesterday. Stacie was on the phone all morning with our insurance trying to get last min approval for Reed to be seen. We had submitted everything they asked for, and more, but now they wanted something else. This meant that it was going to delay a decision for several more days. We frantically tried to make a backup plan and even contacted someone who could tell us how to handle the problems with the insurance. It was very upsetting and we felt overwhelmingly defeated. We had reached our breaking point and Reed thought about cancelling the whole trip. Reed was concerned that we would disappoint all those who had donated their time, money and resources to get us down there only for us to be denied because our insurance had not processed everything needed to keep the appointment.
But Stacie wasn’t going to give up that easily and proceeded to go on as planned. Luckily Reeds cousin came over to bring us a last minute donation and, along with Stacie, was able to help convince Reed to change his mind. She talked with us, cried with us and reminded us that there were so many who were standing behind us and supporting us. We wiped away the tears and got ready to go. In order to make it to the airport on time we were just throwing things into our bags. Reeds mom was coming down with us to help us out and to help take care of both Reed and Stacie. Reeds parents arrived to take us to the airport and we got into the car and left.
Not to long after we got onto the freeway Stacie got a phone call…it was our insurance case manager informing us that Reed had just been approved!! She said that Reed was covered to be evaluated by the Mayo Clinic but was not covered to be treated by the Mayo Clinic. We couldn’t believe it, although we couldn’t receive treatment there, Reed was going to finally be able to receive the help he so desperately needed. All the weeks of fighting to be covered and it finally came as we were on our way to the airport. What a relief! This experience had renewed our faith and had brought us closer to our heavenly father. We know that we received the blessing after the trial of our faith and it came in the form of so many people who had made major sacrifices in our behalf. It was such a humbling experience and there are not enough words to express our gratitude. We are, and will forever be, grateful for the love and support we continue to feel.
With all the stress over the last few weeks and the commotion of getting packed and out the door, Reed became very sick on our way to the airport. He briefly thought that he may not be able to make it through the plane ride But Reed received a blessing from his father that helped him push through it and they boarded the plane. Thankfully we were able to make the trip without any problems and arrived in Arizona with enough time to check into our hotel room and got ready for the next day. The next morning we headed in for Reeds first appointment where he met with the gastroenterologist. He reviewed Reeds medical history and examined Reed and found that Reed was suffering from several significant symptoms. He couldn’t explain why Reeds colon had ruptured but wanted to start to figure it out so he started ordering several test. Reed then had an Internal Medicine consultation and after evaluating him the Internist was just as puzzled as to what was causing Reeds health problems. He set up appointments with several different specialists who specialized in specific areas that could hopefully shed some light on his problems.
Knowing that Reed was from out of town they started the testing right away so they could get as much done as they possibly could before Reed had to return home.
Reed started his testing which would last for over a week. Several days into our trip Stacie received a phone call from the OB department at the Mayo Clinic regarding her case which had been submitted. Stacie explained to them that she had temporarily put her case on hold to allow Reed to be seen but appreciated them for looking into her case. They called again the next day and again Stacie thanked them for calling but was unable to be seen at this time. They continued to call and after the third time, and before Stacie could graciously turned them down again, the nurse asked Stacie if she could at least explain to her why the doctor was so interested in seeing her. The nurse said that the Doctor had received her records, had reviewed them and was convinced that he knew what was causing Stacie’s continuing health problems. They wanted to schedule an appointment with Stacie to be evaluated but unfortunately she had not yet been approved by our insurance. The nurse gave us the test that the Doctor needed to have done to test for the problem and wanted us to get the test when we got back home. They would then wait for the results and if they come back positive they would then schedule an appointment for Stacie to be seen.
Meanwhile Reed was having his own testing done and there were a lot of them. Over the next nine days Reed had test and appointments that sometimes lasted almost 12 hours a day. He was seen by several specialists including a gastroenterologist, a neurologist, a neurosurgeon, a rheumatologist, an internist and even an infectious disease specialist. Virtually every Doctor that Reed saw at one point or another asked Reed about having a connective tissue disorder. Reed replied that he had never been diagnosed with one but that was one the reasons we had come down to the Mayo clinic to be evaluated for those types of disorders. The doctors ordered several tests included several different blood tests, x-rays, MRIs, EKG, Echocardiogram, EMG, EEG, stomach emptying test and several physicals. He even had three intercostal nerve blocks, steroid injections around the intercostal nerves that are located under each rib. They were done to help determine what was causing some of Reeds chest pain that he was having. It was pretty exhausting and sometimes even painful for Reed to have so many tests done but he knew it was for a good cause and he was determined to get through it. At the end of his stay Reed went in to review the results and found out that it was well worth going through.
During the testing they confirmed some problems that that were already known such as having severe degenerative disc disease as well as a gastrointestinal motility disorder which caused Reeds’ stomach to empty slower than normal. But they discovered some things that were completely new to Reed.
One of the problems they discovered was that Reed had a significantly low ascorbic acid (Vitamin C) levels, or as the doctor put it, modern day scurvy. It was a problem he hadn’t seen very often and he couldn’t explain exactly why it was happening. In and of itself ascorbic acid deficiency can cause changes in collagen formation and can damage to your skin, connective tissue, bone, blood vessel walls and even your teeth. It can also prevent wounds from healing and create havoc on your body as a whole. But that wasn’t the only problem that was plaguing Reed. They also discovered that Reed had developed hyperparathyroidism, an abnormally high concentration of parathyroid hormone in the blood, resulting in the damage or dysfunction in other organs and tissues. It also promoted weakening of the bones through the loss of calcium and could cause formation of kidney stones; in fact they saw evidence that Reed had just recently had passed one.
They also saw abnormal changes in his endocrine system, an increase in his hearing loss and even changes with his heart rhythm. Even with all these findings they were still unable to come to a conclusion as to what was causing all of them. These, along with the torn ligaments in his back and hips as well as a spontaneous colon rupture, suggested that there could be an underlining connective tissue disorder. Unfortunately Reeds symptoms overlapped several different disorders but didn’t fit into any one category and they couldn’t confirm or rule out any one diagnosis. They had tried to provide a reason as to why Reed had a spontaneous colon rupture at his age but unfortunately were unable to come to any conclusion. They felt that it could have been diagnosed if they had cultured the tissue at the time of the surgery. The surgeon had asked for one to be done at that time but the pathologist felt that one did not need to be done. Although they couldn’t explain why it happened they knew that something was defiantly wrong.
But one of the most important discoveries they did fine was that Reed was diagnosed with Central sensitization syndrome. This condition is a neurological condition caused by damage and malfunction in the Central Nervous System (CNS) which includes the brain, brainstem, and spinal cord. The damage to the CNS causes a sensitization to the nervous system so that patients have pain that is constant. The intensity of pain remains moderate to severe and is often made worse by touch, movement, emotions, and temperature changes. Central sensitization syndrome is not a fatal disorder, but the syndrome causes disabling chronic pain and suffering among the majority of individuals who have it. The doctor told Reed that treating this syndrome would be very difficult as this syndrome wasn’t fully understood yet. Treating it could take years, if not his entire lifetime, to get it under some degree of control. He stated that although the syndrome is not fully understood at this time Reed should not give up hope. He said “watch, one day this syndrome will appear on the cover of Time magazine and you will have been someone who was diagnosed with it when it was still a relatively unknown syndrome”.
Because this syndrome affected the nervous system it would continue to worsen as Reed continued to have surgeries. Although they knew that Reed would eventually need surgery on his back and both of his hips at some point, they advised him to wait for as long as possible before having them done. The rate of which his degenerative disease was progressing, having surgery would escalate the disease and Reed would eventually be wheelchair bound. They went as far as to say “when you are ready to trade tomorrow for today, that is when you know you have reached the point for surgery”. The degenerative disc disease and having central sensitization syndrome meant that Reeds condition would continue to get worse and Reeds only hope to some quality of life was to remain as active as he could and to try to preserve and maintain the health he still had.
The one thing that all the doctors did agree on was just how impressed they were with how motivated and how hard Reed had worked to get to where he was. Several doctors told Reed that they couldn’t believe just how much he had been through and was still working full time to provide for his family and was moving as well as he did. They had seen patients who had had a fraction of the problems Reed had gone through and had given up with trying to get better. One doctor even said he had never met someone as young as Reed who had gone through everything he was going through and was still positive and cheerful as he was. He urged Reed to remain that way and to continue to fight through his problems.
With knowing what we were now up against, we were even more determined to find ways to get Reed through this. The doctor gave us a list of several test and procedures that Reed needed to have done to further investigated what they had found when we returned home. Reed was also instructed to be evaluated by an immunologist and an endocrinologist, specialties we were unable to see in the time we had there.
We collected all the doctors’ reports and all of the imaging and lab results and headed home. We had missed our boys so much and we were so glad to finally be home with them. It had already been a busy start to the summer and we knew it was only going to get busier.
When we got home we wanted to do something with the boys to help them take their minds off of everything that was happening as well as make it a fun summer for them. They worried about their mom and dad and we felt that no child should have to stress about their parents health and we wanted to alleviate some of that concern. So at the begging of June Stacie took the boys down to Lake Powell to spend some time together as well as with Stacie’s family. Going to Lake Powell every year has been a tradition in the family for many years and we did not want to break it now. They spent a few days down there and had a lot of fun.
When they got back we got to spend some time with Reeds extended family and had a family reunion. We got to spend some time playing games, making some funny movies and went to see the airplane museum at the air force base. On the way up Camden got to talk to some fire men and they let him sit in the truck with the headphones on. They also got to see a lot of amazing planes, something that they love. We had a lot of fun and got to spend some time again as a family.
In June we were given the opportunity to go on an amazing vacation with our very close friends. Over the years we have been extremely fortunate to go on many fun and memorable trips with our families but aside from our honeymoon, we had never gone away with just the two of us. With our continuous health problems as well as the large financial burden that came with them, it was never a possibility. Knowing that we were struggling more than ever before our dear friends planned a trip for us so that we could get away for just a little bit and have some fun.
We started making plans at the beginning of the year and over the months the trip started to come together. Being involved with the planning of the trip gave us a regular reminder that something good was coming and that getting through the struggles would be worth it. At times we were worried that we wouldn’t be able to go because we just couldn’t handle it physically. When you have a chronic illness you lose the choice to do just anything you want. You are unable to eat certain foods, do certain activities and are limited to a certain amount of strength and energy.
It takes longer to get up and get going and it takes longer to wind down and to get some sleep, if any. We were worried that our limitations would prevent them from doing what they wanted to do and would perhaps ruin the trip for our friends. They knew of our concern and reassured us that we couldn’t ruin the trip and that it was meant to be a fun and relaxing trip. They will never know just how much it meant to us to have something we could look forward to, to help us to get through the overwhelming events of the year. With the loving help from our close friends and our family, we were able to get away and go on an amazing vacation to the Bahamas that we will never forget.
Knowing that we had to travel through Florida to get to the Bahamas, we took the opportunity to go a few days early so that we could spend some time with Stacie’s brother Ryan and his wife Courtney. They had moved down to Florida to go to graduate school and we had not been able to see them as much as we wanted. They were gracious enough to let us stay with them and showed us around Naples Florida. They took us to the beach where we went paddle boarding and swimming. We also went to the big Cyprus, near the everglades, where we saw manatees, turtles and several alligators.
They even introduced us to our first taste of alligator tail from good ol’ Cracka-lackin Jack’s, as we called it. We also went to the boardwalks and got to see some amazing sunsets on the beaches, which were some of our favorite times. We had an amazing time with them and it was hard to leave them again and say goodbye as we headed off to pick up our friends and board the cruise ship to the Bahamas.
It was an exciting reunion as we hadn’t seen much of our friends since they too had moved away about a year ago. We have known Sallie and Jessie for a very long time and have always talked about wanting to go on a trip together one day. So when the time finally came to take our trip we were extremely excited and grateful for the chance to see it come true. Anytime we get together we always end up having an awesome time and this was only going to be better. We had a great time on the cruise ship with good food, some dancing and even made our own music video.
The next day we arrived in the Bahamas and we headed for our resort. We spent the next few days in an amazingly beautiful place with turquoise water, white sand beaches, and palm trees and of course the Bahama sun. We went on a boat ride, rode wave runners on the ocean and saw the sites around the island. We even had to break up a fight between a boyfriend and girlfriend who were, let’s just say, high on more than just love. The scrimmage ended with Jessie, Reed and a security guard taking down the man and holding him down until we could put cuffs on him. We were waiting for the hidden cameras to come out thinking that this has to be some sort of hidden camera show but it never happened. The whole thing ended with us escorting them both to the security office. They were later deported off the island.
That experience was just one of many that showed how we would always have each other’s back and was part of the unforgettable experiences we had there. We also went snorkeling, paddling boarding, swimming and spent much needed time relaxing on the beach. But the most memorable part of this amazing trip was that we just laughed the whole time. As our friend Sallie puts it, we just had nonstop tummy aching laughter. That has always been the best quality about being together is that a majority of the time is spent just laughing together.
We needed that because we have not been able to laugh like that for a long time. Now we were able to get away from some of our stresses and spend time with great friends and have an incredible time making a lot of good memories. They were patient with us and were able to overlook our little, but very frustrating, faults that come with being chronically ill and somehow made us feel normal for once. It was just another reason we felt blessed to have such good friends. Jessie and Sallie we will be forever grateful for not only for such a memorable gift but also the timing in which it came. It would be needed for the events to come in the following weeks.
We made it back from our trip in the Bahamas just in time for the Sargent family reunion. Stacie’s family has a family reunion every year at Bear Lake and we have looked forward to going each year. We get to spend a few days at a camp ground playing games and just spending time around our extended family especially with our grandparents, or as Camden calls them grandma and grandpa great!. We also spend an entire day at the lake where we get to swim, paddle board and go on wakeboarding runs and boat rides. We also got to spend a few nights as a family in a log cabin that made the trip that much better. It makes it a fun trip and a great way to spend some time together before we headed back to the Mayo clinic, this time for Stacie.
In August, Stacie had been approved by our insurance to be seen by the OB at the Mayo Clinic. After having so much happen over the last few weeks, we were really exhausted and worn down. Stacie’s body suffered a little more than normal and she ended up coming down with strep throat. The doctor was concerned about Stacie because he said that Stacie had one of the most severe cases of strep throat that he had ever seen. He put her on an antibiotic and gave her some things to watch for if things became worse. So when things became worse only a week later we took Stacie back in to see what was happening. The doctor found that she had also come down with the flu. With Stacie being so sick we were concerned that she wouldn’t be well enough to go through with her surgery. We contacted the doctor down at the Mayo Clinic about what we should plan on doing and he said that if Stacie was doing better within the next week, and did not have a fever, then we would go through with having the surgery. So after a lot of prayer and going by our faith we planned and prepared for the trip knowing that things would work out as they should.
We knew that Stacie was meant to be seen by this new doctor and felt that he had been inspired to research through Stacie’s medical records. We also believe it was a tender mercy that the doctor felt confident enough about what he had found that he would continue to contact Stacie until she was able to be treated. By the end of the week Stacie was feeling well enough to leave and we found ourselves heading back to Arizona for Stacie to have what we hoped to be, her last surgery related to her endometriosis.
The morning after we arrived in Arizona we were able to meet with the doctor. We were hoping he would be able to schedule the surgery the next day, so that we could start the recovery and get back home as soon as possible. Although the thought of having surgery so far away from home was a little frightening to her, Stacie was ready and willing to do whatever she needed to do to finally be done with the difficulties and complications she had experienced ever since her hysterectomy.
Meeting with the doctor went like we had planned, and thankfully, the doctor felt that he could help Stacie with her endometriosis problem and retrieve what he felt was an ovarian remnant still growing in her abdomen. We were reassured with his decision because we knew that he had been trained to handle more complex cases such as Stacie’s and also had the equipment needed for this kind of surgery. We scheduled the surgery for the next morning and went to our hotel to get some rest before the big day. The next morning we arrived at the hospital only to find out that there were some issues with the insurance covering the surgery. The thought of rescheduling her surgery was heartbreaking.
We knew that this surgery couldn’t wait. We went through our options and decided that we would go ahead with the surgery. That meant that we had to sign papers saying that we would pay for the surgery in full if our insurance would not approve coverage. It was a scary feeling, because it would be at least $30,000 and that was just for the surgery. That did not including the hospital stay or any amount that may come up due to any complications. However we both felt in our hearts that things would work out, just like they had in the past when we went by faith alone. We had been blessed with enough donations with the Tender Mercies 4 Tender Souls site that we felt we could at least make a few monthly payments and hopefully buy us enough time to figure something out. We signed the papers and got Stacie checked in while Reed continued to work on getting things approved by the insurance.
Stacie was called back to get prepared for surgery, but Reed had to wait in the waiting area until she was ready to be wheeled to the operating room. Her preparations were taking a little longer than expected because they had trouble getting her blood screened to have some on hand in case she needed it during her surgery. Due to the fact that Stacie had to have a blood transfusion after her hysterectomy, getting the right blood wasn’t a quick process. They let Reed come back to sit with her until they were ready, and when he walked into her room, Stacie knew something had happened. Reed leaned in to give her a kiss and told her that he had just got off the phone with our case manager and she told us that our insurance had just approved coverage for the surgery! Stacie was beyond ecstatic and we will always remember that moment because, although we could have done without the added stress, we knew that our Heavenly Father still had a hand in our lives and was watching over us. Our faith continued to grow as we again witnessed that blessings come after our faith is tested and that our Heavenly Father would never leave our sides. Just minutes after getting the news, Stacie was wheeled back to the operating room for surgery.
Reed waited in the waiting room for several hours. He watched as several doctors would come out to the waiting room desk. The staff would call for the family overhead and they would stand up. The doctor would then come over to the family and go over the procedure and results with them. Reed overheard several reports about the surgeon discovering cancer and how they were hopeful that they had removed all of it. He also overheard some reports where it was worse than they had originally thought. Hearing all of these results started to make Reed a little nervous. When over an hour had passed from the completion time they had told him, Reed started to worry. It wasn’t until they called his name over head to come to the waiting room desk that Reed became very concerned.
When Reed walked up to them they simple told him that the doctor wanted to talk to Reed alone in the consultation room and that he would be there shortly. All Reed could think about was what had gone wrong? Why didn’t the doctor come out to talk to Reed like the others did? If they had talked about problems as serious as cancer with the families in the waiting room, what had they found that they couldn’t talk to Reed there? They lead Reed to a room and asked him to have a seat and said that the doctor would be there soon.
It seemed like forever but the doctor finally came in and sat directly in front of Reed. He started off by telling Reed that during the surgery he did find endometriosis present and was able to excise it off Stacie's abdominal, pelvis, bladder and bowel walls. Then he said that when taking it off of her bowels, her colon perforated and opened up. He said that it didn’t take much for it to open up, simply by taking a hold of the bowel with his instruments had caused it to rupture. He found that an implant of endometriosis had burrowed into Stacie's colon and had weakened the colon wall. With the already weakened bowel wall it was only a matter of time before it had opened up anyways.
Thankfully, this was something we had talked about at our initial appointment. We knew that this would be a particularly difficult surgery, especially knowing that she did have endometriosis on her bowels and other areas that were not safe to remove during her previous surgeries. We had chosen to come to the Mayo Clinic mainly because the doctor had specific training for this problem as well as having specialized equipment to help remove the diseased tissue. Although, he had to open her up to repair the bowel, we were just grateful that he able to contain and repair her bowel, without any major problems. He also performed a few additional procedures to make sure everything else was OK, and felt confident that Stacie would heal okay.
He wanted to keep a close eye on her and told me that he was going to keep her in the hospital for 4-5 days just to watch her closely. He said that the implant itself was not necessarily big, but that it was burrowed itself fairly deep into her intestine. He didn’t see as much on her upper abdomen and was confident that all of her small bowel was now free of implants. He also had removed a mass of questionable tissue which he felt may have contained the ovarian remnants, which he felt was the main reason the endometriosis had continued to grow after her total hysterectomy. Reed was relieved to know that things went relatively well, and could have been a lot worse. Thankfully Stacie’s bowel perforation happened during the surgery and not spontaneously at home which could have been devastating.
Stacie started to improve day to day and was getting up and walking round. After spending five days in the hospital, Stacie was released from the hospital and we went back to the hotel for one more night. Stacie’s post-op appointment was scheduled for the next morning and if the doctor felt that Stacie was well enough he would clear her to fly home. Unfortunately, it wasn’t that easy. Stacie was not doing very well that morning and he was concerned that she might have an infection, so he ordered more testing and put her on some steroids and antibiotics.
If the blood work and other test came back OK, he felt she would be well enough to make the trip back home. The problem with having additional test ordered was that we would not make it on time for our flight home. We ended up having to move our flights back for later that day, but it was actually a blessing in disguise. Right at the time our flight would have been taking off a major monsoon rolled in. It came so fast and so hard that it actually swept cars and mobile homes down river beds with the flash flood water. There was a lot of damage done and it caused several flight delays. People were scrambling to change their tickets and if we hadn’t changed ours earlier that morning we may have not made it home that day. We were able to fly home and were happy to be with our boys and family.
We had been away from our boys more than ever before in just a few months’ time. The boys had worried so much about their mom and were on the phone every night talking with her. Now she was home and they were happy to have her close by and even made her a welcome home sign. Once we were home we were able to take some time and get some family pictures. We had been so busy this summer and we were ready for things to settle down and to enjoy a new start to what we hoped to be our new found health.
But that part never came as only two weeks after getting back from Arizona, and the day after taking family pictures, Stacie developed some breathing problems and was later diagnosed with pneumonia. We believe it was related to the same infection that the doctor may have seen earlier before we went down to the Mayo Clinic that had only grown worse. Stacie was put on some antibiotics and was told to stay down and rest as much as possible.
Meanwhile Reed was following up on some test and procedures that we were unable to complete in the time we were at the Mayo Clinic. Reed had some biopsies of his stomach and small bowel that were taken and sent off to Salt Lake City to have some specific testing done. He was also had a PH Bravo Study test done. It was done while doing the upper endoscopy and a small capsule, about the size of a gel cap, was temporarily attached to the wall of the esophagus. The capsule measures pH levels in the esophagus and transmits readings by radio telecommunications to a receiver that Reed wore on your belt.
He had to record every activity, such as eating, sleeping and changes in body positions, by pressing several preset buttons on the receiver. It was a way to see if some of Reeds symptoms were a result of GERD or if there was something else affecting him. The test came back showing that his symptoms were not due to GERD but from something else that they could not identify at the time. It also showed that he had antral gastritis and white blood cells scattered throughout the biopsies taken. With these results the doctor was unsure as to how to proceed with Reeds treatment other than to manage the symptoms the best they could and watch for any changes. But of course as we start to focus our attention on any single member of our family something else seems to come up with someone else.
One night, mid-October, Camden was having some fun with family being over and was full of energy. It was getting late and he was trying to prolong the dreaded bedtime and thought a game of keep away was just what he needed. He grabbed a toy and took off trying to keep out of the reach from Dad.
In doing so he took a corner around a chair to closely and hit his arm which in turn hit his mouth and he fell to the ground and started to cry. Reed picked him up and put him on his lap and noticed something fell to the ground. He picked it up and realized that it was Camden’s tooth. Camden had knocked his tooth out, well most of it any ways. Most of it had come out but part of his tooth was still in its socket. We had to wait until the next morning to take him into the Dentist who thought that it would take a little more work to get it out then what they could do that day and scheduled an appointment for the extraction the next morning.
The next morning Camden had his tooth pulled out but it was much harder than anyone had predicted and it was going to be. As the dentist started to work on the tooth he found that the tooth had not only broken but it had cracked into two pieces which made pulling it out all at once impossible. It definitely was much harder and much more traumatic for Camden and it was hard to try to console him and tell him everything would be okay. He made it through the procedure and because he was so brave Stacie took him to get a treat as a reward.
If that experience wasn’t traumatic enough for him Camden problems were not over. When they got home Stacie noticed that Camden’s face and eyes had started to swell and she called the Dentist right way. She wasn’t able to get a hold of him so she called the pediatrician who wanted to see Camden right away. The Doctor had taken care of Camden since he was born including his allergic reaction after getting the flu mist almost a year ago. Reed had hurried home from work and we took Camden straight to the doctor’s office.
As we were walking into the pediatrician’s office the Dentist called back and stated he was concerned because he had found a large amount of infection inside Camden’s tooth when removing it and was worried that it may have spread into his blood stream. The two doctors talked about how to manage the problem and Camden was started on an antibiotic and given some medicine to stop the allergic reaction. He also had to come back the next morning to get an additional medication and to be reassessed. With having gone through such a scary ordeal we were able to finish the day with something fun as we all went out to eat at Costa Vida, one of Camden’s favorite places!
We had often heard from others that if we didn’t have bad luck we wouldn’t have any luck at all, which at times seemed to be truer than other times, but it isn’t always the case. Sometimes we get lucky and usually it happens right when things start getting tougher to manage. This was true in this case as right after we dealt with Camden’s ordeal Reed received a call that he had won some football tickets to the BYU game. Now this may not seem as big of a deal to some but it meant a lot to Reed. For several years Reed had wanted to take Payton to a BYU football game but for the last three years he had to have surgery or was recovering from his ruptured colon during the football season and was unable to go. But this time Reed was finally able to take Payton to a game, with some additional perks, and they had a memorable time which they were extremely grateful for. Sports are something that Reed and Payton have always enjoyed together. Reed has loved teaching Payton how to play soccer, basketball and baseball. But it wasn’t until October that Reed got to help teach Payton how to dance.
Payton has always been interested in being active and playing sports but it even surprised Reed a little when Payton decided he wanted to learn how to dance and wanted to compete with his cousin at a ballroom dance competition. Reeds slightly older sister gave them a few lessons and a routine a few weeks before the competition. Payton enjoyed learning something entirely new and loved spending time with his cousin as they practiced three times before they went to compete. We knew that they would have a good time and have a good experience but we were pleasantly surprised when they ended up taking 3rd place overall at the UVU competition. It just goes to show what a good partner, a good coach and a little bit of talent can do. We were proud of them both and happy to see Payton discover talents that he didn’t know he had.
With all of this happening it seemed to help keep our minds off our medical problems for a little bit but unfortunately medical problems don’t go away when you try to ignore them. The problems continued to show up and with Reed the pain and numbness continued to increase. His doctor ordered another x-ray and MRI of his back which came back showing that the degeneration had progressed further yet again. It also indicated that different sections were shifting, a sign that there was another ligament tear in his back. Reed knew that in order to fix the ligament tear they would have to have the surgery that would require two, possibly three, additional levels to be fused. This would mean a completely fused lumbar spine and a partially fused thoracic spine. We discussed ways to delay the surgery for as long as possible until there was no other choice other than to go in and fuse the levels. With what we had learned at the Mayo clinic, trying to fix this problem would end up hurting Reed in the long run. We scheduled some steroid injections and prayed that we could keep the symptoms at bay.
Camden has always looked up to Payton and loved to follow his older brother in many things and playing soccer was one of them. Camden had looked forward to playing soccer one day and in December he got to play in a local community league. He really enjoyed playing and loved having some of his friends on his team. We enjoyed watching him play and were grateful that he had a good way to burn off some extra energy.
We had an eventful year this year and we were happy to have the holiday season finally come.We had so much to be thankful for this year and the holiday season always seems to be a time where we can focus on all the good that has happened. We had been given so much, more this year than ever before, and we took the opportunity to spend some quality time together and enjoy just being together as a family. We don’t always get to do as much as before because out health often hinders the activities we would like to enjoy. But we do what we can and take care of the problems as a family when they do come up. Just before the year was over, one of those problems started to show up again.
Stacie was having a lot of back pain and was struggling to get through the day. We knew that Stacie had a bulged disc found about a year ago when she had a steroid injection. That injection was followed by problems due to a dura puncture which made Stacie nervous about getting something done now. But because of her pain, the doctor suggested that Stacie give it another try. So a few days before Christmas, Stacie went in to have another steroid injection. She tolerated it much better than the first time and there were no problems afterwards. She was feeling well enough that on the 31st they decided to take her back in and do a nerve ablation on those nerves. Although Stacie struggled a little from the side effects of the steroids and the stress the procedures had put on her body, the procedures went well and made the pain at least bearable for Stacie.
We had made it through yet another year and we couldn’t have done it alone. We had not escaped the health problems but more than ever we had others to help us in the fight. We have always felt blessed to have so many health care providers that have continued to fight for us and continued to give us hope. Although they are not able to take away all of our problems they really showed us that they cared and continue to look for ways to make it easier for us to deal with them.
Perhaps the biggest lesson we learned this year was that in trying to remain too independently strong and self-sufficient throughout our trials and suffering, we were in fact hindering our own path to finally overcoming them.
Why did we hide our struggles and needs from others? Why did we feel like we had to always be standing tall and strong in front of others when we were in our deepest moments of pain and suffering? Why were we so afraid of allowing others to share our burdens and offer the help we needed, the help the wanted to give us?
Even our Savior, Jesus Christ, who lived a perfect life, had His moments of struggles too. Even He went down to his knees in pain and agony, fully vulnerable, as He suffered unimaginably for all of us… just to give us the gift of His atonement. And during that suffering, even He looked outside himself for some help and support as he called out to His Father, “O my Father, if it be possible, let this cup pass from me: nevertheless not as I will, but as thou wilt.” (Matthew 26:39)
And if he could do that, then why shouldn't we seek the help that others could offer?!
Everyone will have challenges in their life. Everyone will have suffering, pain, disappointments and so on; but no one is meant to do it all alone. It was only through the actions of others that we were finally capable of seeing some light at the end of the tunnel. If anything that we have learned throughout our darkest of hours could help others hold on to their hope, then our suffering would have served a greater purpose. Others couldn’t necessarily take away our suffering, but they showed us that they were there to help us through it; which, in its own way, has helped ease our suffering.
Our hope and prayer is that we will one day be able to make as big of a difference in someone’s life as others have made in ours.