None of these things below here are details we could have possibly planned, or tried to work out ourselves, but God knew, and He worked them together so perfectly for us. God has just taken care of so many small details for us that we just feel so overwhelming thankful.
Thankful that He loves us so perfectly.
Thankful that Jesus would give His life, so we could have a grace-filled life.
Thankful that He answers prayer.
Thankful for every, single person who lifts Sofia’s name up in prayer.
Thankful for every text, message, call, post, and word of encouragement.
We are so very thankful to have so many people walking this journey with us, and for a Savior who carries us down one of the hardest paths of our lives.
Thank you,
Scott, Tess, Sofia, Nora, Ezekiel & Joanna
Thankful that He loves us so perfectly.
Thankful that Jesus would give His life, so we could have a grace-filled life.
Thankful that He answers prayer.
Thankful for every, single person who lifts Sofia’s name up in prayer.
Thankful for every text, message, call, post, and word of encouragement.
We are so very thankful to have so many people walking this journey with us, and for a Savior who carries us down one of the hardest paths of our lives.
Thank you,
Scott, Tess, Sofia, Nora, Ezekiel & Joanna
Sofia's First Battle with Cancer
Diagnosis
Sadly, most pediatric cancer stories start out the same way, and ours is no different. There are multiple, small symptoms that get dismissed as it being a “virus”. Starting in October 2013, a month after Sofia’s sister Nora was born, we started to see the symptoms in Sofia. Thankfully, God’s timing is perfect, and when Nora was born, Tess quit her job to stay home with the girls, which allowed her to closely monitor Sofia’s symptoms. It started out with just one day, randomly throwing up. She wouldn’t run a fever, and she would just go on with her day. This progressed into some fatigue, and more frequent vomiting. We found ourselves in and out of the doctor's office or the emergency room far too often, but it was always dismissed and labeled as a virus. Her symptoms started to culminate at the end of 2013. Sofia had been throwing up at least a few times a week, always after a nap or first thing in the morning, even though we didn't notice that pattern for a while. What most would call “mommy instinct”, we say the Holy Spirit led Tess to believe it was more than a virus, so she asked the pediatrician for an MRI. Because it was just precautionary however, the wait was over a month long. In the mean-time, she was put on an anti-nausea medication, and we saw several other specialists, who gave us no answers.
Just after Christmas, Sofia had been throwing up so frequently that she got severely dehydrated that we found ourselves in the Hurley ER. They did an X-ray of her stomach and found that she was impacted all the way up her intestines, and they admitted her until she could pass enough poop that they felt the blockage was gone. We had a rough night at the hospital, but through stool softeners and enemas she was able to pass enough poop that she could go home. We were told that the severe constipation explained all of the nausea and other symptoms we had been seeing. Even with the all-clear, we knew it was unlikely that she could get that constipated and dehydrated without there being an underlying reason. Kids don’t get that sick with no explanation.
She came off her anti-nausea medication the day after we left the ER, and after a day or two we noticed she was becoming unsteady. She had been a great walker, and was very active, but she was starting to be noticeably unbalanced and falling when she was walking or running. We mentioned it to the pediatrician a few days prior, but the anti-nausea medication had a side effect of dizziness, so it was easily explained away. Now with the medication out of her system, it was a major concern, and the pediatrician tried desperately to move up the MRI. The week of New Year’s, 2014, Sofia threw up every single morning. We tried to hold off on another ER visit in hopes that an MRI would come available that week, but we said that if it happens again Saturday morning we'll take her in again. Saturday morning (January 4, 2014) rolled around, and sure enough, she threw up multiple times that morning. We packed a bag with only a few things, and went back to Hurley ER. The nurse had come in with discharge papers for us to sign, before the Doctor had even seen us, stating that all of her symptoms lined up with 18 month shot reactions, and that the doctor was going to discharge us once he made his way around. We refused to sign the papers, and asked to see the doctor right away. Once the doctor came in, Tess explained that she had quit her job to stay home to take care of the girls, she knew something was wrong with Sofia, and since she had no job, she had plenty of time to wait there until they ran every test available to figure out what was going on with her. We were told they couldn’t do an MRI, because she would need to be sedated, so we settled for a CT scan.
Shortly after the CT scan, the doctor returned to tell us that the results were abnormal. The scan showed that she had hydrocephalus, which is swelling of the ventricles, from too much fluid which causes excess pressure on the brain. They transferred us to Detroit Children's Hospital by ambulance for further testing. That night was among one of the longest of our lives. We met one of the members of the neurosurgery team that explained to us what we were dealing with: Sofia's scan showed an almost certain case of a brain tumor. Because the hydrocephalus was so extreme, they were debating running additional tests like an MRI or even emergent surgery that night. Since both of those options would require that Sofia be put to sleep under anesthesia, she couldn't have any food or drink until they made a decision. It was very late into the evening at this point, and Sofia was nearly uncontrollable at times, which is within reason for an 18 month old who is hungry and thirsty. Eventually, they decided to wait until Sunday to do an MRI and place the temporary shunt, called an EVD, to relieve the pressure from the fluid buildup.
Sunday’s MRI confirmed that Sofia had a large brain tumor in the posterior fossa, the empty space where cerebral and spinal fluid flow, at the rear, lower part of the brain, near the base of the skull. She would need surgery to remove it as soon as possible. However, being that it was January in Michigan, there was a major snowstorm which prevented the staff from getting to the hospital on Monday for a surgery, so the surgery was moved to the next day.
Sadly, most pediatric cancer stories start out the same way, and ours is no different. There are multiple, small symptoms that get dismissed as it being a “virus”. Starting in October 2013, a month after Sofia’s sister Nora was born, we started to see the symptoms in Sofia. Thankfully, God’s timing is perfect, and when Nora was born, Tess quit her job to stay home with the girls, which allowed her to closely monitor Sofia’s symptoms. It started out with just one day, randomly throwing up. She wouldn’t run a fever, and she would just go on with her day. This progressed into some fatigue, and more frequent vomiting. We found ourselves in and out of the doctor's office or the emergency room far too often, but it was always dismissed and labeled as a virus. Her symptoms started to culminate at the end of 2013. Sofia had been throwing up at least a few times a week, always after a nap or first thing in the morning, even though we didn't notice that pattern for a while. What most would call “mommy instinct”, we say the Holy Spirit led Tess to believe it was more than a virus, so she asked the pediatrician for an MRI. Because it was just precautionary however, the wait was over a month long. In the mean-time, she was put on an anti-nausea medication, and we saw several other specialists, who gave us no answers.
Just after Christmas, Sofia had been throwing up so frequently that she got severely dehydrated that we found ourselves in the Hurley ER. They did an X-ray of her stomach and found that she was impacted all the way up her intestines, and they admitted her until she could pass enough poop that they felt the blockage was gone. We had a rough night at the hospital, but through stool softeners and enemas she was able to pass enough poop that she could go home. We were told that the severe constipation explained all of the nausea and other symptoms we had been seeing. Even with the all-clear, we knew it was unlikely that she could get that constipated and dehydrated without there being an underlying reason. Kids don’t get that sick with no explanation.
She came off her anti-nausea medication the day after we left the ER, and after a day or two we noticed she was becoming unsteady. She had been a great walker, and was very active, but she was starting to be noticeably unbalanced and falling when she was walking or running. We mentioned it to the pediatrician a few days prior, but the anti-nausea medication had a side effect of dizziness, so it was easily explained away. Now with the medication out of her system, it was a major concern, and the pediatrician tried desperately to move up the MRI. The week of New Year’s, 2014, Sofia threw up every single morning. We tried to hold off on another ER visit in hopes that an MRI would come available that week, but we said that if it happens again Saturday morning we'll take her in again. Saturday morning (January 4, 2014) rolled around, and sure enough, she threw up multiple times that morning. We packed a bag with only a few things, and went back to Hurley ER. The nurse had come in with discharge papers for us to sign, before the Doctor had even seen us, stating that all of her symptoms lined up with 18 month shot reactions, and that the doctor was going to discharge us once he made his way around. We refused to sign the papers, and asked to see the doctor right away. Once the doctor came in, Tess explained that she had quit her job to stay home to take care of the girls, she knew something was wrong with Sofia, and since she had no job, she had plenty of time to wait there until they ran every test available to figure out what was going on with her. We were told they couldn’t do an MRI, because she would need to be sedated, so we settled for a CT scan.
Shortly after the CT scan, the doctor returned to tell us that the results were abnormal. The scan showed that she had hydrocephalus, which is swelling of the ventricles, from too much fluid which causes excess pressure on the brain. They transferred us to Detroit Children's Hospital by ambulance for further testing. That night was among one of the longest of our lives. We met one of the members of the neurosurgery team that explained to us what we were dealing with: Sofia's scan showed an almost certain case of a brain tumor. Because the hydrocephalus was so extreme, they were debating running additional tests like an MRI or even emergent surgery that night. Since both of those options would require that Sofia be put to sleep under anesthesia, she couldn't have any food or drink until they made a decision. It was very late into the evening at this point, and Sofia was nearly uncontrollable at times, which is within reason for an 18 month old who is hungry and thirsty. Eventually, they decided to wait until Sunday to do an MRI and place the temporary shunt, called an EVD, to relieve the pressure from the fluid buildup.
Sunday’s MRI confirmed that Sofia had a large brain tumor in the posterior fossa, the empty space where cerebral and spinal fluid flow, at the rear, lower part of the brain, near the base of the skull. She would need surgery to remove it as soon as possible. However, being that it was January in Michigan, there was a major snowstorm which prevented the staff from getting to the hospital on Monday for a surgery, so the surgery was moved to the next day.
Surgery
Sofia's surgery was performed on Tuesday morning, January 7th, 2014. The roads had cleared enough for most of our family, our head pastor, Pastor Chris, and our outreach pastor, Pastor Aaron, to be there. The morning of her surgery, Sofia was being a little spunky and feisty. We held her and took turns kissing her as we waited for them to tell us it was time, and to put her to sleep.
Once the surgery started, we all waited together in the surgery waiting room. The surgical team called us every hour with an update on the surgery. Each time they called they said she was doing well and that the surgery was progressing smoothly. During the surgery, we had times of stillness, Bible reading, lots of individual prayer, and we prayed as a group. After several hours, Dr. Sood, her neurosurgeon, came out and told us that the surgery had went great. He informed us that he was able to get all of the tumor out, even though the tumor had infiltrated parts of the cerebellum and brain stem. He also told us he believed that it was an Astrocytoma, which was the best case scenario for a tumor in that location, as there wouldn't be any need for follow-up chemo or radiation.
Sofia's recovery from the brain surgery went relatively smoothly. The pressure on the brain was decreasing, and her fluid began to regulate on its own, without assistance from the EVD. The EVD was eventually removed, and there was no need for a permanent shunt. A major blessing. Her incision healed up nicely, and from a surgical standpoint she was doing perfect.
Even though the recovery from the brain surgery was very smooth, Sofia's hospital stay was anything but! She contracted C-Diff from the heavy antibiotics she was on, that were killing off all of the good bacteria in her stomach. This was the most painful and difficult part of her healing process. She would writhe around in bed and in our arms from the pain, and because she still had the EVD at this time, we had to continually keep all her lines from getting tangled. It was unbearable to see how much pain she was in, and to be told there was nothing that could be done about it. It will be an experience that we will never forget, even though we wish we could. She also contracted RSV from a patient in an adjacent room, but thankfully, her symptoms didn't get any worse than a mild cough and slightly abnormal breathing.
Sofia's surgery was performed on Tuesday morning, January 7th, 2014. The roads had cleared enough for most of our family, our head pastor, Pastor Chris, and our outreach pastor, Pastor Aaron, to be there. The morning of her surgery, Sofia was being a little spunky and feisty. We held her and took turns kissing her as we waited for them to tell us it was time, and to put her to sleep.
Once the surgery started, we all waited together in the surgery waiting room. The surgical team called us every hour with an update on the surgery. Each time they called they said she was doing well and that the surgery was progressing smoothly. During the surgery, we had times of stillness, Bible reading, lots of individual prayer, and we prayed as a group. After several hours, Dr. Sood, her neurosurgeon, came out and told us that the surgery had went great. He informed us that he was able to get all of the tumor out, even though the tumor had infiltrated parts of the cerebellum and brain stem. He also told us he believed that it was an Astrocytoma, which was the best case scenario for a tumor in that location, as there wouldn't be any need for follow-up chemo or radiation.
Sofia's recovery from the brain surgery went relatively smoothly. The pressure on the brain was decreasing, and her fluid began to regulate on its own, without assistance from the EVD. The EVD was eventually removed, and there was no need for a permanent shunt. A major blessing. Her incision healed up nicely, and from a surgical standpoint she was doing perfect.
Even though the recovery from the brain surgery was very smooth, Sofia's hospital stay was anything but! She contracted C-Diff from the heavy antibiotics she was on, that were killing off all of the good bacteria in her stomach. This was the most painful and difficult part of her healing process. She would writhe around in bed and in our arms from the pain, and because she still had the EVD at this time, we had to continually keep all her lines from getting tangled. It was unbearable to see how much pain she was in, and to be told there was nothing that could be done about it. It will be an experience that we will never forget, even though we wish we could. She also contracted RSV from a patient in an adjacent room, but thankfully, her symptoms didn't get any worse than a mild cough and slightly abnormal breathing.
Pathology
After several days, Sofia finally made it out of ICU and onto the neurosurgery floor. She was sleeping peacefully, when two Doctor's walked into the room. They introduced themselves as the Radiation Oncologists, and proceeded to tell us that Sofia would need to begin radiation treatments soon. We were completely blindsided and shocked. The last thing we were told was that she wouldn't need any follow-up treatment. They started handing us pamphlets on pediatric radiation and pediatric cancer, and it was at this point that we told them we hadn't even found out the pathology results. They seemed a bit surprised we hadn’t gotten the pathology results, and scrambled to find it in their paperwork. They finally found the results and told us that Sofia had an Ependymoma, Grade 2. Nothing can prepare you to hear those words, and then to look down and see every adverse side effect spelled out in black and white, it really is hard to breath in that moment. It was at this point we realized, Sofia had cancer, and our lives were going to be very different from that point forward.
After several days, Sofia finally made it out of ICU and onto the neurosurgery floor. She was sleeping peacefully, when two Doctor's walked into the room. They introduced themselves as the Radiation Oncologists, and proceeded to tell us that Sofia would need to begin radiation treatments soon. We were completely blindsided and shocked. The last thing we were told was that she wouldn't need any follow-up treatment. They started handing us pamphlets on pediatric radiation and pediatric cancer, and it was at this point that we told them we hadn't even found out the pathology results. They seemed a bit surprised we hadn’t gotten the pathology results, and scrambled to find it in their paperwork. They finally found the results and told us that Sofia had an Ependymoma, Grade 2. Nothing can prepare you to hear those words, and then to look down and see every adverse side effect spelled out in black and white, it really is hard to breath in that moment. It was at this point we realized, Sofia had cancer, and our lives were going to be very different from that point forward.
Proton Radiation
The news of Sofia's cancer diagnosis, and the need for radiation, traveled rapidly through Facebook to our family and friends. We were quickly contacted by Julie, a friend of our Florida-Rider family, telling us about the option of Proton Radiation Therapy and the benefits, especially in Sofia's situation. She had completed her radiation-oncology residency at the University of Florida Proton Therapy Institute and therefore had amazing information for us. We very quickly realized that the benefits from this type of treatment were exactly what Sofia needed.
Traditional radiation is much like an x-ray: It goes into the body at one strength, hit the targeted area, and then exits the body at a similar potency. Proton radiation is different in that it can be administered to a much more precise area, starting out at a smaller intensity, building up, until it hits the tumor site, where it reaches full strength, and then the particles die there. There is no exit radiation, and the entrance radiation dose is much smaller as well. This spares much of the healthy tissue behind and surrounding the area being treated. As you can imagine, this is amazing technology for pediatric brain tumor treatment, because of the potential damage done to the healthy part of the brain while it is still developing. Proton therapy has been around for a while, but it is still not as readily available as traditional radiation. At the time of Sofia’s diagnosis, there were not any Proton facilities located in the state of Michigan, so we looked into going to the UF Proton Therapy Institute in Jacksonville, FL.
Since Proton Radiation is not as common as traditional radiation, there are much more specific requirements for insurance to cover it. We had many conversations with our insurance provider, Blue Cross Blue Shield of Michigan, hoping and praying that they would cover the treatment. It seemed like just about every day we were on the phone with them working through one issue or another. Meanwhile, time was ticking to start Sofia's treatment. It is standard treatment to begin radiation within 6 weeks of the surgery. We were also working with UF Proton to see what options were available to us if BCBS decided not to cover the treatment, and they told us they would be able to work with us to cover her treatment costs. We really felt like the Lord was leading us to do Proton, so we decided that even if it meant we were in debt for the rest of our lives, the benefit of her quality of life from the lessened side effects from was worth it.
We made a quick trip to Jacksonville to meet the doctors, get Sofia's planning scans, and get her mask created. We got back to Michigan, packed up our belongings needed for a 6 week stay 1,000 miles away from home, and traveled back to Jacksonville. We still didn't know if insurance was going to cover the cost of treatment or not, but we were going anyway. On way down, we received an email from Blue Cross Blue Shield stating they were going to cover Proton Radiation!! Only one day before we were scheduled to arrive – God’s timing is always prefect.
We settled into a routine pretty quickly, which allowed us to easily adjust to living in a new place. Sofia was the youngest patient at the time, so she was the first to be treated every day. Between checking her vitals, administering the anesthesia, receiving the protons, and recovering from anesthesia we were at the Proton Center for roughly 90 minutes every day Monday through Friday.
The news of Sofia's cancer diagnosis, and the need for radiation, traveled rapidly through Facebook to our family and friends. We were quickly contacted by Julie, a friend of our Florida-Rider family, telling us about the option of Proton Radiation Therapy and the benefits, especially in Sofia's situation. She had completed her radiation-oncology residency at the University of Florida Proton Therapy Institute and therefore had amazing information for us. We very quickly realized that the benefits from this type of treatment were exactly what Sofia needed.
Traditional radiation is much like an x-ray: It goes into the body at one strength, hit the targeted area, and then exits the body at a similar potency. Proton radiation is different in that it can be administered to a much more precise area, starting out at a smaller intensity, building up, until it hits the tumor site, where it reaches full strength, and then the particles die there. There is no exit radiation, and the entrance radiation dose is much smaller as well. This spares much of the healthy tissue behind and surrounding the area being treated. As you can imagine, this is amazing technology for pediatric brain tumor treatment, because of the potential damage done to the healthy part of the brain while it is still developing. Proton therapy has been around for a while, but it is still not as readily available as traditional radiation. At the time of Sofia’s diagnosis, there were not any Proton facilities located in the state of Michigan, so we looked into going to the UF Proton Therapy Institute in Jacksonville, FL.
Since Proton Radiation is not as common as traditional radiation, there are much more specific requirements for insurance to cover it. We had many conversations with our insurance provider, Blue Cross Blue Shield of Michigan, hoping and praying that they would cover the treatment. It seemed like just about every day we were on the phone with them working through one issue or another. Meanwhile, time was ticking to start Sofia's treatment. It is standard treatment to begin radiation within 6 weeks of the surgery. We were also working with UF Proton to see what options were available to us if BCBS decided not to cover the treatment, and they told us they would be able to work with us to cover her treatment costs. We really felt like the Lord was leading us to do Proton, so we decided that even if it meant we were in debt for the rest of our lives, the benefit of her quality of life from the lessened side effects from was worth it.
We made a quick trip to Jacksonville to meet the doctors, get Sofia's planning scans, and get her mask created. We got back to Michigan, packed up our belongings needed for a 6 week stay 1,000 miles away from home, and traveled back to Jacksonville. We still didn't know if insurance was going to cover the cost of treatment or not, but we were going anyway. On way down, we received an email from Blue Cross Blue Shield stating they were going to cover Proton Radiation!! Only one day before we were scheduled to arrive – God’s timing is always prefect.
We settled into a routine pretty quickly, which allowed us to easily adjust to living in a new place. Sofia was the youngest patient at the time, so she was the first to be treated every day. Between checking her vitals, administering the anesthesia, receiving the protons, and recovering from anesthesia we were at the Proton Center for roughly 90 minutes every day Monday through Friday.
One of the coolest things we found while we were in Jacksonville was the Catty Shack Ranch Wildlife Sanctuary. Sofia loved getting a chance to see all the lions, tigers, and other cats up close and personal. She especially loved visiting at night when they were being fed. They roared and roared, much to her delight. You can hear her screaming with excitement in this video.
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While in Jacksonville, we rented a furnished home for the roughly 6 weeks that we were living there. This enabled both sides of our family to come down and spend time with us. We have said it many times, but we have both been very blessed to have such supportive parents that love our girls, and us, unconditionally.
Pulte, the company Scott works for, builds homes across the country, which included Jacksonville. Each day, after treatment, Scott would head into the local office in Jacksonville, and the girls would head home, to see what the day had in store.
The only real side effect we saw was during her treatment was hair loss, which started growing back just a few months after her treatment was finished. She continues to struggles with speech and coordination, but nothing significant, which we attribute to the Lord answering our prayers and the lessened side effects of Proton Radiation.
Our time spent in Jacksonville was surprisingly pleasant and enjoyable. We actually made many great memories during our time there. It's only by the grace of God that at such a difficult time we can look back and say that it was enjoyable. He has been so good to our family.
Sofia would remain cancer free for just slightly over 2 years.
Pulte, the company Scott works for, builds homes across the country, which included Jacksonville. Each day, after treatment, Scott would head into the local office in Jacksonville, and the girls would head home, to see what the day had in store.
The only real side effect we saw was during her treatment was hair loss, which started growing back just a few months after her treatment was finished. She continues to struggles with speech and coordination, but nothing significant, which we attribute to the Lord answering our prayers and the lessened side effects of Proton Radiation.
Our time spent in Jacksonville was surprisingly pleasant and enjoyable. We actually made many great memories during our time there. It's only by the grace of God that at such a difficult time we can look back and say that it was enjoyable. He has been so good to our family.
Sofia would remain cancer free for just slightly over 2 years.
Relocation
Shortly after returning to Michigan in 2014, Scott’s job moved, and at the end of the summer, our family moved to Atlanta. We lived there for just under 2 years, with the hopes of moving back to Michigan, to be near family again. We had prayed for some time that the Lord would allow us to move back, and in May, Scott got a new position, within his company, that allowed us to move back. We were so ecstatic. We just thought our life was lining up the way we had hoped and prayed. Little did we know, God was most certainly preparing us for a very different path that was ahead.
Shortly after returning to Michigan in 2014, Scott’s job moved, and at the end of the summer, our family moved to Atlanta. We lived there for just under 2 years, with the hopes of moving back to Michigan, to be near family again. We had prayed for some time that the Lord would allow us to move back, and in May, Scott got a new position, within his company, that allowed us to move back. We were so ecstatic. We just thought our life was lining up the way we had hoped and prayed. Little did we know, God was most certainly preparing us for a very different path that was ahead.
Make-A-Wish
In April 2016, we were able to take the most amazing trip through Make-A-Wish to Disney World. Again, we are so blessed to have a family that is united though Jesus, that both sides, parents and siblings, were able to come down with us for the trip, and make the most amazing memories with us. While we were there, we were able to surprise all 13 of our family members with the exciting news that we were expecting another baby, due in November. We were very excited to share the good news, and the staff at Give Kids the World did such a great job at making it a dramatic reveal. The Make-A-Wish trip was unbelievable. You expect it to be amazing, and then it just surpasses any expectation you have. We are so thankful we were given such an amazing gift and opportunity.
In April 2016, we were able to take the most amazing trip through Make-A-Wish to Disney World. Again, we are so blessed to have a family that is united though Jesus, that both sides, parents and siblings, were able to come down with us for the trip, and make the most amazing memories with us. While we were there, we were able to surprise all 13 of our family members with the exciting news that we were expecting another baby, due in November. We were very excited to share the good news, and the staff at Give Kids the World did such a great job at making it a dramatic reveal. The Make-A-Wish trip was unbelievable. You expect it to be amazing, and then it just surpasses any expectation you have. We are so thankful we were given such an amazing gift and opportunity.
Sofia's 2nd Battle with Cancer
Red Arrow - Cancer
A Routine MRI
Sofia had been receiving MRIs every three months, to monitor any recurrences. We had one scheduled for May 12th, just a week before the moving truck was supposed to arrive. We went to the appointment like normal. Came home, laid around, and then decided to go out for some Mexican food for dinner. As we were pulling into the parking lot, a restricted number came up Tess’ phone. When she answered it, Sofia’s oncologist, Dr. Felker began to apologize for calling, but wanted to let us know that they found a new tumor on her scans from earlier that day. He began to explain that once they saw this tumor, they reviewed her scan from February, and were able to see it there too, but that it was so small, they labeled it as a blood vessel. He profusely apologized, and said he would call us tomorrow, after their tumor board met.
Tess was hysterically crying, almost unable to relay the message to Scott. It was such a surreal moment, as we held each other and cried, while Sofia ran around asking us what was taking so long, she was hungry. Phone calls are one of the hardest things to do when your child has cancer. You try so hard not to cry, but it never works out that way. Three sentences seem to take a lifetime to get out, and no one can ever convey their heartache or sympathy adequately during those calls. Sofia was so adamant that she was hungry, we had to go in, still crying, so she could eat. She wasn’t showing any symptoms, whatsoever, of having cancer again, so it was such an odd feeling, knowing her health was in incredible danger, while she was running around so normally – she even broke her flip-flop at that restaurant from running around so crazy.
Once we finally met with Dr. Felker and we went over all the data, and our personal moving situation, he suggested we continue our move back to Michigan, and do her surgery and follow-up there, since that’s where our support system and Scott’s job would be. We agreed, and were back in Michigan within a week.
Sofia had been receiving MRIs every three months, to monitor any recurrences. We had one scheduled for May 12th, just a week before the moving truck was supposed to arrive. We went to the appointment like normal. Came home, laid around, and then decided to go out for some Mexican food for dinner. As we were pulling into the parking lot, a restricted number came up Tess’ phone. When she answered it, Sofia’s oncologist, Dr. Felker began to apologize for calling, but wanted to let us know that they found a new tumor on her scans from earlier that day. He began to explain that once they saw this tumor, they reviewed her scan from February, and were able to see it there too, but that it was so small, they labeled it as a blood vessel. He profusely apologized, and said he would call us tomorrow, after their tumor board met.
Tess was hysterically crying, almost unable to relay the message to Scott. It was such a surreal moment, as we held each other and cried, while Sofia ran around asking us what was taking so long, she was hungry. Phone calls are one of the hardest things to do when your child has cancer. You try so hard not to cry, but it never works out that way. Three sentences seem to take a lifetime to get out, and no one can ever convey their heartache or sympathy adequately during those calls. Sofia was so adamant that she was hungry, we had to go in, still crying, so she could eat. She wasn’t showing any symptoms, whatsoever, of having cancer again, so it was such an odd feeling, knowing her health was in incredible danger, while she was running around so normally – she even broke her flip-flop at that restaurant from running around so crazy.
Once we finally met with Dr. Felker and we went over all the data, and our personal moving situation, he suggested we continue our move back to Michigan, and do her surgery and follow-up there, since that’s where our support system and Scott’s job would be. We agreed, and were back in Michigan within a week.
Who would treat her?
We started working on getting Sofia into The University of Michigan Mott’s Children’s Hospital immediately after we arrived in Michigan. There was so much confusion about which department she needed to be seen at, who would see her, and when. The major problem was that the oncologist she needed to see was out of the country, and nothing could move forward, not even scheduling the surgery to remove her new tumor, until this specific oncologist saw her.
In the meantime, Scott and Tess were scouring the internet and medical journals for information on recurrent Ependymoma, and praying that the Holy Spirit would lead them to the right path. Sofia’s radiologist at UF Proton suggested looking into St. Jude Children’s Research Hospital, and we had already read they had a trial for recurrent Ependymoma, so we strongly felt led to submit Sofia’s case to St. Jude to see if they would accept her as their patient.
God promised to work all things together for our good, so while we were busy being upset and frustrated at how long it was taking U of M to see and treat Sofia, God was busy using that extra time to line up treatment at St. Jude’s for Sofia. The same day St. Jude called to tell us that she was accepted as a patient, and we would leave on June 27th, U of M called to tell us they could fit her in for surgery on July 28th. It was almost comical to see how much better God’s plan was than ours.
2 days before we left for St. Jude, we had a huge 4th birthday party for Sofia, and revealed the gender of our 3rd baby. It was the greatest way to spend time with everyone we love, and say goodbye before we left. Sofia’s party was Saturday, June 25th, her actual birthday was Sunday June 26th, we left for St. Jude on Monday June 27th, and her surgery was scheduled for Friday, July 1st.
We started working on getting Sofia into The University of Michigan Mott’s Children’s Hospital immediately after we arrived in Michigan. There was so much confusion about which department she needed to be seen at, who would see her, and when. The major problem was that the oncologist she needed to see was out of the country, and nothing could move forward, not even scheduling the surgery to remove her new tumor, until this specific oncologist saw her.
In the meantime, Scott and Tess were scouring the internet and medical journals for information on recurrent Ependymoma, and praying that the Holy Spirit would lead them to the right path. Sofia’s radiologist at UF Proton suggested looking into St. Jude Children’s Research Hospital, and we had already read they had a trial for recurrent Ependymoma, so we strongly felt led to submit Sofia’s case to St. Jude to see if they would accept her as their patient.
God promised to work all things together for our good, so while we were busy being upset and frustrated at how long it was taking U of M to see and treat Sofia, God was busy using that extra time to line up treatment at St. Jude’s for Sofia. The same day St. Jude called to tell us that she was accepted as a patient, and we would leave on June 27th, U of M called to tell us they could fit her in for surgery on July 28th. It was almost comical to see how much better God’s plan was than ours.
2 days before we left for St. Jude, we had a huge 4th birthday party for Sofia, and revealed the gender of our 3rd baby. It was the greatest way to spend time with everyone we love, and say goodbye before we left. Sofia’s party was Saturday, June 25th, her actual birthday was Sunday June 26th, we left for St. Jude on Monday June 27th, and her surgery was scheduled for Friday, July 1st.
Arriving at St. Jude
The four days before Sofia’s surgery were packed full of appointments and tests. We met Dr. Merchant, who is her main Doctor at St. Jude, we met the surgeon, Dr. Klimo, who would be performing the surgery that Friday, and we had the long-awaited presurgical MRI.
Sofia had her MRI on Wednesday, and we met with Dr. Merchant to go over the results on Thursday. We were hoping to hear the tumor hadn’t really grown since the last MRI, but that wasn’t the case. It had grown to about 6x6 mm, from about 4x4 in May. There was also a new piece of information that was incredibly hard to hear: they believed they had found a second tumor, on the bottom of the cerebellum. This was devastating news. This type of growth meant the tumor was spreading, and was no longer considered a local, recurrent tumor. Dr. Merchant was very straightforward with us (which we like) and told us that if this was metastatic tumor, that would be devastating for Sofia. The only treatment for that type of scenario is full, cranio-spinal radiation, and he said that at only 4 years old, that type of treatment was unheard of, and there was no way she could handle that type of treatment at such a young age. Having done as much research as we have, we knew that this type of scenario would put Sofia in a new category of palliative treatments, as opposed to treatment aimed at curing her. He said, we just pray that’s not what it is. That was one of the last things we went over, before calling it a day at the hospital.
By this time, both sets of parents were with us in Memphis, and were able to be there at the appointment with Dr. Merchant. After receiving the mostly bad news, we decided to go to the Memphis zoo, to try and have some fun before the big day.It was such a great visit. All the animals were out, and the exhibits were much more up-close and personal than we were used to. Sofia had a blast! At the new hippo exhibit, one of the hippos came right up to Sofia at the window, stared at her, and moved along the path with her. She was beyond thrilled! She was sure that hippo was telling her hi. They also had several splash pads, and Sofia was just as excited to play in those as she was about her hippo experience. It was the perfect way to end the day, right before surgery, and it helped keep everyone’s mind off the gravity of the next day.
The four days before Sofia’s surgery were packed full of appointments and tests. We met Dr. Merchant, who is her main Doctor at St. Jude, we met the surgeon, Dr. Klimo, who would be performing the surgery that Friday, and we had the long-awaited presurgical MRI.
Sofia had her MRI on Wednesday, and we met with Dr. Merchant to go over the results on Thursday. We were hoping to hear the tumor hadn’t really grown since the last MRI, but that wasn’t the case. It had grown to about 6x6 mm, from about 4x4 in May. There was also a new piece of information that was incredibly hard to hear: they believed they had found a second tumor, on the bottom of the cerebellum. This was devastating news. This type of growth meant the tumor was spreading, and was no longer considered a local, recurrent tumor. Dr. Merchant was very straightforward with us (which we like) and told us that if this was metastatic tumor, that would be devastating for Sofia. The only treatment for that type of scenario is full, cranio-spinal radiation, and he said that at only 4 years old, that type of treatment was unheard of, and there was no way she could handle that type of treatment at such a young age. Having done as much research as we have, we knew that this type of scenario would put Sofia in a new category of palliative treatments, as opposed to treatment aimed at curing her. He said, we just pray that’s not what it is. That was one of the last things we went over, before calling it a day at the hospital.
By this time, both sets of parents were with us in Memphis, and were able to be there at the appointment with Dr. Merchant. After receiving the mostly bad news, we decided to go to the Memphis zoo, to try and have some fun before the big day.It was such a great visit. All the animals were out, and the exhibits were much more up-close and personal than we were used to. Sofia had a blast! At the new hippo exhibit, one of the hippos came right up to Sofia at the window, stared at her, and moved along the path with her. She was beyond thrilled! She was sure that hippo was telling her hi. They also had several splash pads, and Sofia was just as excited to play in those as she was about her hippo experience. It was the perfect way to end the day, right before surgery, and it helped keep everyone’s mind off the gravity of the next day.
Another Surgery
The night before the surgery, we read a verse that really gave us peace about what was a head - Proverbs 21:31, The horse is prepared for the day of battle, but safety (victory) is of the Lord.
It felt like Sofia, really, our whole family, was going into battle. As Sofia’s parents, we had done everything we could to prepare for this day: we had fervently prayed, we had researched, we found the best hospital, with the best doctors for Sofia’s type of cancer - our horses were prepared for battle. However, even with having everything lined up, we were keenly aware that any good news, any success during the surgery, wasn’t because of anything we had done. We knew that any victory we saw that day would be because of The Lord, and His grace and mercy being poured out on us. There is tremendous peace in that knowledge too, that the God of the universe, the same God who created us, loved us, and died for us, is the one who fights the battle, and secures the victory - not us. That truth brings so much peace, if you let it.
They called us when they made the first incision, to let us know things had started. We were expecting around a 4 hour surgery, they told us the nurse would call every hour with an update. The next call we received was exactly 1 hour and 8 minutes after they made the first incision, and they called to tell us they were closing her up already. She would still need to have her port placed, but the brain portion of the surgery was over. When something goes that much faster than planned, it can mean one of two things: it was a much easier and simpler procedure than they anticipated, or things were a lot worse when they opened her up, and there wasn’t much they could do. We were on pins and needles waiting for Dr. Klimo to come out and tell us how things went.
Tess saw Dr. Klimo coming from a distance, and gathered everyone to meet him. The first thing Dr. Klimo did was hug Tess. He said the surgery went great, and that he was able to get all of the visible tumor that was sitting on the brainstem. The tumor had come out very easily. Although we were incredibly relieved to hear about the great news concerning the primary tumor, our hearts were anxious to hear about the second tumor. We very quickly asked about the second tumor from the scan yesterday, and he excitedly told us that when they opened Sofia up, they looked all around and couldn’t find the second tumor anywhere! We were in such shock, we asked him to repeat what he said, he laughed and said nothing was there, he couldn’t find anything else. All at once, the entire weight of the news from the previous day had miraculously disappeared. It was the absolute best news we could have asked for. Sofia had a Gross Total Resection, which gives her some of the best odds as beating her type of cancer, and there was no secondary tumor.It was a very emotional moment for our family. Immediately, the verse in Ephesians came to mind: Glory to Him that is able to do exceeding abundantly above all that we ask. To be honest, our hearts prayer wasn’t even that there be no tumor. We had accepted the fact that something was there. Our prayer was just for the tumor, to be benign, a result of her first round of radiation. We would have been happy with that outcome. This was even more than we had even asked The Lord for; exceeding and abundant. We floated around on happiness and praise for the rest of the day.
The night before the surgery, we read a verse that really gave us peace about what was a head - Proverbs 21:31, The horse is prepared for the day of battle, but safety (victory) is of the Lord.
It felt like Sofia, really, our whole family, was going into battle. As Sofia’s parents, we had done everything we could to prepare for this day: we had fervently prayed, we had researched, we found the best hospital, with the best doctors for Sofia’s type of cancer - our horses were prepared for battle. However, even with having everything lined up, we were keenly aware that any good news, any success during the surgery, wasn’t because of anything we had done. We knew that any victory we saw that day would be because of The Lord, and His grace and mercy being poured out on us. There is tremendous peace in that knowledge too, that the God of the universe, the same God who created us, loved us, and died for us, is the one who fights the battle, and secures the victory - not us. That truth brings so much peace, if you let it.
They called us when they made the first incision, to let us know things had started. We were expecting around a 4 hour surgery, they told us the nurse would call every hour with an update. The next call we received was exactly 1 hour and 8 minutes after they made the first incision, and they called to tell us they were closing her up already. She would still need to have her port placed, but the brain portion of the surgery was over. When something goes that much faster than planned, it can mean one of two things: it was a much easier and simpler procedure than they anticipated, or things were a lot worse when they opened her up, and there wasn’t much they could do. We were on pins and needles waiting for Dr. Klimo to come out and tell us how things went.
Tess saw Dr. Klimo coming from a distance, and gathered everyone to meet him. The first thing Dr. Klimo did was hug Tess. He said the surgery went great, and that he was able to get all of the visible tumor that was sitting on the brainstem. The tumor had come out very easily. Although we were incredibly relieved to hear about the great news concerning the primary tumor, our hearts were anxious to hear about the second tumor. We very quickly asked about the second tumor from the scan yesterday, and he excitedly told us that when they opened Sofia up, they looked all around and couldn’t find the second tumor anywhere! We were in such shock, we asked him to repeat what he said, he laughed and said nothing was there, he couldn’t find anything else. All at once, the entire weight of the news from the previous day had miraculously disappeared. It was the absolute best news we could have asked for. Sofia had a Gross Total Resection, which gives her some of the best odds as beating her type of cancer, and there was no secondary tumor.It was a very emotional moment for our family. Immediately, the verse in Ephesians came to mind: Glory to Him that is able to do exceeding abundantly above all that we ask. To be honest, our hearts prayer wasn’t even that there be no tumor. We had accepted the fact that something was there. Our prayer was just for the tumor, to be benign, a result of her first round of radiation. We would have been happy with that outcome. This was even more than we had even asked The Lord for; exceeding and abundant. We floated around on happiness and praise for the rest of the day.
Recovery
Thankfully, Sofia’s recovery this time was a million times better than her first surgery. Obviously, it was a much smaller tumor, but she didn’t experience any adverse side effects like before.
Sofia is one of the most determined children you will ever meet. She has been that way since birth. When she was learning to walk, at only 9 months old, you could watch her set her eyes on a destination, and it wouldn’t matter how many times she fell, she would keep pushing herself until she got there. She wouldn’t let herself crawl, she would push herself to walk, the whole way, to whatever destination she had set for herself. She is still that way today.
When she woke up, Sofia was not happy about being in the hospital, and was very adamant she wanted to go home. The first day, we really just wanted her to rest, and focused on keeping her comfortable so she could sleep. Even though the surgery was not as long or complicated as her first, they still have to make a large incision in the neck, and crack open her skull, which caused severe stiffness in her neck and pain, as you can imagine. She wasn’t able to use any upper body strength without it causing her a great amount of pain. Holding her head up, changing positions in bed, getting up to use the bathroom caused her an enormous amount of pain. She was still adamant she wanted to go home immediately. We told her she needed to eat, poop, and walk on her own before she could leave. That was all she needed to hear. She had her goals, and she was going to achieve them. The very next day she sat up on her own, ate, pooped, and was making it her mission to walk. She still had to get used to bearing the full weight of her upper body again, with the tenderness in her neck, but she was making huge strides, and she knew it.
By Sunday, she was walking on her own, and by Monday, July 4th, she was up playing in the toy room. She hadn’t even had any pain medication since Saturday. It was amazing to see her recover so quickly. We would have been discharged that Monday, but with it being a holiday, there wasn’t enough staff to coordinate our release. When Tuesday morning rolled around, Sofia had her bag packed, and she was out by 11 am.
We stayed at St. Jude through the week, and then left for Michigan Friday, July 8th, one week after her surgery. We were back home for 5 days before we had to be back to St. Jude on the 17th, for the planning stage of her Proton Radiation Therapy.
Thankfully, Sofia’s recovery this time was a million times better than her first surgery. Obviously, it was a much smaller tumor, but she didn’t experience any adverse side effects like before.
Sofia is one of the most determined children you will ever meet. She has been that way since birth. When she was learning to walk, at only 9 months old, you could watch her set her eyes on a destination, and it wouldn’t matter how many times she fell, she would keep pushing herself until she got there. She wouldn’t let herself crawl, she would push herself to walk, the whole way, to whatever destination she had set for herself. She is still that way today.
When she woke up, Sofia was not happy about being in the hospital, and was very adamant she wanted to go home. The first day, we really just wanted her to rest, and focused on keeping her comfortable so she could sleep. Even though the surgery was not as long or complicated as her first, they still have to make a large incision in the neck, and crack open her skull, which caused severe stiffness in her neck and pain, as you can imagine. She wasn’t able to use any upper body strength without it causing her a great amount of pain. Holding her head up, changing positions in bed, getting up to use the bathroom caused her an enormous amount of pain. She was still adamant she wanted to go home immediately. We told her she needed to eat, poop, and walk on her own before she could leave. That was all she needed to hear. She had her goals, and she was going to achieve them. The very next day she sat up on her own, ate, pooped, and was making it her mission to walk. She still had to get used to bearing the full weight of her upper body again, with the tenderness in her neck, but she was making huge strides, and she knew it.
By Sunday, she was walking on her own, and by Monday, July 4th, she was up playing in the toy room. She hadn’t even had any pain medication since Saturday. It was amazing to see her recover so quickly. We would have been discharged that Monday, but with it being a holiday, there wasn’t enough staff to coordinate our release. When Tuesday morning rolled around, Sofia had her bag packed, and she was out by 11 am.
We stayed at St. Jude through the week, and then left for Michigan Friday, July 8th, one week after her surgery. We were back home for 5 days before we had to be back to St. Jude on the 17th, for the planning stage of her Proton Radiation Therapy.
More Proton Radiation
Sofia started her 2nd radiation treatment on Tuesday, August 2nd, and ended in September of 2016. Scott, Tess, Sofia, and Nora all stayed at Tri Delta Place, a hotel on the St. Jude campus, and then later moved to the Ronald McDonald house, which is an amazing housing facility for more long term family stays.
God has been so gracious to our family in preparing this path we are walking. Scott’s new position at Pulte, that moved them back to Michigan, has also been a position that allows him to work remotely, so he could be present at all of her procedures and appointments, and still put in a full-day’s worth of work.
We didn't have a home, and as frustrating as it was at times - especially for Tess, who was going into the nesting period of her pregnancy - not having the financial burden of a mortgage or rent as that time in our lives, when we lived at the hospital, was one less thing we have to worry about.
Even when we look back at how unexpected it was to get pregnant with Nora, 6 months after Sofia was born, God had a plan. Nora being born prompted Tess to stay home, which enabled them to catch Sofia’s cancer before the common side effects like seizures or loss of eyesight took place. Even now, Nora and Sofia are the best playmates. They keep each other occupied through hours of appointments and waiting.
Sofia started her 2nd radiation treatment on Tuesday, August 2nd, and ended in September of 2016. Scott, Tess, Sofia, and Nora all stayed at Tri Delta Place, a hotel on the St. Jude campus, and then later moved to the Ronald McDonald house, which is an amazing housing facility for more long term family stays.
God has been so gracious to our family in preparing this path we are walking. Scott’s new position at Pulte, that moved them back to Michigan, has also been a position that allows him to work remotely, so he could be present at all of her procedures and appointments, and still put in a full-day’s worth of work.
We didn't have a home, and as frustrating as it was at times - especially for Tess, who was going into the nesting period of her pregnancy - not having the financial burden of a mortgage or rent as that time in our lives, when we lived at the hospital, was one less thing we have to worry about.
Even when we look back at how unexpected it was to get pregnant with Nora, 6 months after Sofia was born, God had a plan. Nora being born prompted Tess to stay home, which enabled them to catch Sofia’s cancer before the common side effects like seizures or loss of eyesight took place. Even now, Nora and Sofia are the best playmates. They keep each other occupied through hours of appointments and waiting.
Sofia's Current Battle
This section will be a work in progress as time allows. Please check the Updates section for those details in the meantime.