Hi everyone!
We hope that you all had a wonderful Christmas! We thoroughly enjoyed our Christmas with friends and family and we feel extremely blessed!
Reyn and I had an appointment with the radiation oncologist today at Emory. We learned a lot about their recommended treatment and plenty of interesting facts so here is the breakdown. We met with Dr. Ian Crocker, whom we both really liked. He spent almost 90 minutes with us describing various courses of treatment and listening to our concerns. 90 minutes for a physician is extremely rare these days so I was very grateful for his attentive care. He even let us see the 3D images of the MRI on his imaging software and gave us a copy of the path report. Very helpful and informative!
Dr. Crocker recommends a treatment regimen of 6 weeks of radiation, 5 days a week followed by chemotherapy. (Some of this will get technical so if you want to skip ahead feel free to do so.) Reyn has a tumor that has chromosomal deletions of 1p, 19q, and IDH1. What does that mean exactly? It means it is favorable news as far as treatment is concerned. These types of tumors respond well to radiation and chemotherapy typically. The chemotherapy is recommended due to these deletions and should begin immediately following radiation. The chemo will be delivered orally 5 times/ month and should have minimal effects on Reyn. He recommends the use of Image Guided Radiation Therapy (IGRT) using the Rapid Arc method. The Rapid Arc means that they arc the beams of radiation and are more able to deliver precise amounts of radiation directly to the tumor, minimizing damage to any good cells surrounding the tumor. Each session will take about 40 minutes total, with the actual radiation treatment lasting about 10 minutes. These are Dr. Crocker's recommendations but he will discuss Reyn's case with Dr. Voloschin, the neurological oncologist at Emory along with a team of neuroscience professionals in order to decide on the best course of treatment. I like that every case is presented to a "team" in order to determine the most favorable treatment. So, we will meet with Dr. Voloschin soon to further discuss his radiation options.
If we go this route his radiation will definitely be at Emory. They have a team that only deals with brain tumors and when receiving radiation treatment, you want to make sure your radiation therapist is precise! ;) We are still planning on going to Duke for a 2nd opinion so that we can make the best decision regarding Reyn's treatment. We ask for your prayers as we make these important decisions.
Some other great news we received is that Reyn's likelihood of another seizure will be decreasing over time. Of course there is a chance as with any tumor patient, but if he had a problem, it is more likely to be a smaller tremor or twitch. But as time goes on, even this is more rare considering he is on anti-seizure medications and will be for some time. Reyn was excited to hear that he can continue to work through radiation and chemotherapy and that each of them should have few effects other than fatigue and a possibility of some hair loss. He has been debating "buzzing" his head for years so this might be the perfect opportunity!
We will continue to covet your prayers as we make decisions regarding treatment and looking ahead to baby Grier's arrival. The clock is officially ticking at this point. We know juggling a newborn, radiation treatment, and planning rides for Reyn to work and radiation will be much to manage but we know it can be done! We are so thankful for each of you who have volunteered to help with transportation as this will be one of our greatest needs. You all have continued to be blessings and miracles to us. Thanks and love to you all!
More to come, but that is the latest. Back to work in the morning! Busy days are planned!
Jordan and Reyn
Party of four
Wednesday, December 26, 2012
Friday, December 21, 2012
Another long day...
Hello friends!
We are home from another long day at Emory and happy to be stretched out on the couch. We met with the neurosurgeon this morning and Reyn had his staples removed. The incision healed up quite nicely and we don't expect any suprises with the continued healing of the incision site. Thank you for those of you who prayed specifically that Reyn would not catch Jackson's flu or pneumonia....prayers were answered! And Jackson bounced back very quickly as well!
As far as his diagnosis it was a lot of what we expected. It is an oligoastrocytoma, grade 2 so it is a benign tumor. We are grateful for this! It is an extremely rare type of tumor and commonly referred to as a "mixed tumor." Our prayer is that his tumor is comprised more of the oligodendrocyte cells than the astrocyte cells but we have no way of knowing the composition. The oligodendrocyte cells are the less aggressive cells. People can live with these tumors for a long time so we just have to pray that the tumor does not grow. So at this point the doctor recommends radiation for 6 weeks, 5 days a week to treat the tumor. Reyn may need to take medication following radiation but we won't know that until we meet with the radiation oncologist. Our appointment with the radiation oncologist is next Wednesday, December 26th at 9am. Reyn has been given the "ok" to live life normally and continue work as usual. The radiation may make him a little tired but other than that he will be back to his same old routine!
After we left the neurosurgeon's office we headed over for a PET scan. Reyn agreed to be part of a study conducted at Emory testing a different dye that is injected into the bloodstream and reveals more details about the tumor. It gives the physicians a better view of the tumor by differentiating the "good cells" from the "bad cells" and can help when treating the tumor with radiation. The more precise they can be, the better!
We also have another major decision to make regarding his treatment. Many have referred us to Duke University as they are kind of the "big shots" when it comes to treating tumors. We have completed all of the paperwork already and copies of the MRI and pathology slides have been sent so we are just waiting for Duke to inform us that the MRI and slides have arrived and been reviewed. (The chief neurosurgeon called me last Saturday and we began the admission process) We feel good about the doctors at Emory but just feel like we owe it to ourselves to seek a 2nd opinion.
Here are our specific prayer requests:
1. For healing
2. That God would guide us to the right individuals to treat Reyn's tumor.
3. Baby Grier is due January 22nd so it is very likely that I will not be able to accompany Reyn to the 2 day visit that Duke requires for their initial evaluation. So we need for Grier to "stay put" until daddy returns!
4. That God would lead us to the best radiation oncologist for his treatment.
5. That we can figure out rides for Reyn to/ from work and radiation.
6. For Reyn's incision to heal without any complications.
7. For continued peace and rest
8. For no more seizures- there is always a risk with brain tumor patients so we pray his medication does the trick and prevents seizures
Reyn's attitude is amazing and he completely trusts the Lord to heal him and carry us through this "bump" in the road. I am grateful for the perspective that something like a brain tumor can give. We appreciate one another more than ever and our marriage is stronger than it has ever been. We are leaning on the Lord and still expecting BIG things. We fully expect healing...whether that's through medicine or His divine power so this is what we will claim!
We love you all and hope you have a very Merry Christmas!
We are home from another long day at Emory and happy to be stretched out on the couch. We met with the neurosurgeon this morning and Reyn had his staples removed. The incision healed up quite nicely and we don't expect any suprises with the continued healing of the incision site. Thank you for those of you who prayed specifically that Reyn would not catch Jackson's flu or pneumonia....prayers were answered! And Jackson bounced back very quickly as well!
As far as his diagnosis it was a lot of what we expected. It is an oligoastrocytoma, grade 2 so it is a benign tumor. We are grateful for this! It is an extremely rare type of tumor and commonly referred to as a "mixed tumor." Our prayer is that his tumor is comprised more of the oligodendrocyte cells than the astrocyte cells but we have no way of knowing the composition. The oligodendrocyte cells are the less aggressive cells. People can live with these tumors for a long time so we just have to pray that the tumor does not grow. So at this point the doctor recommends radiation for 6 weeks, 5 days a week to treat the tumor. Reyn may need to take medication following radiation but we won't know that until we meet with the radiation oncologist. Our appointment with the radiation oncologist is next Wednesday, December 26th at 9am. Reyn has been given the "ok" to live life normally and continue work as usual. The radiation may make him a little tired but other than that he will be back to his same old routine!
After we left the neurosurgeon's office we headed over for a PET scan. Reyn agreed to be part of a study conducted at Emory testing a different dye that is injected into the bloodstream and reveals more details about the tumor. It gives the physicians a better view of the tumor by differentiating the "good cells" from the "bad cells" and can help when treating the tumor with radiation. The more precise they can be, the better!
We also have another major decision to make regarding his treatment. Many have referred us to Duke University as they are kind of the "big shots" when it comes to treating tumors. We have completed all of the paperwork already and copies of the MRI and pathology slides have been sent so we are just waiting for Duke to inform us that the MRI and slides have arrived and been reviewed. (The chief neurosurgeon called me last Saturday and we began the admission process) We feel good about the doctors at Emory but just feel like we owe it to ourselves to seek a 2nd opinion.
Here are our specific prayer requests:
1. For healing
2. That God would guide us to the right individuals to treat Reyn's tumor.
3. Baby Grier is due January 22nd so it is very likely that I will not be able to accompany Reyn to the 2 day visit that Duke requires for their initial evaluation. So we need for Grier to "stay put" until daddy returns!
4. That God would lead us to the best radiation oncologist for his treatment.
5. That we can figure out rides for Reyn to/ from work and radiation.
6. For Reyn's incision to heal without any complications.
7. For continued peace and rest
8. For no more seizures- there is always a risk with brain tumor patients so we pray his medication does the trick and prevents seizures
Reyn's attitude is amazing and he completely trusts the Lord to heal him and carry us through this "bump" in the road. I am grateful for the perspective that something like a brain tumor can give. We appreciate one another more than ever and our marriage is stronger than it has ever been. We are leaning on the Lord and still expecting BIG things. We fully expect healing...whether that's through medicine or His divine power so this is what we will claim!
We love you all and hope you have a very Merry Christmas!
Friday, December 14, 2012
Diagnosis
Hello there! It's Reyn.
Oligoastrocytoma. Grade 2
We got the call from the nurse as soon as they found out the definitive diagnosis yesterday from the path report. This is a great link that Jordan found discussing the type of tumor:
www.abta.org/secure/oligodendrioma-oligo.pdf
This is a rare one, because there are two types of cells involved, but is still a type of glioma, and is benign. We are still waiting on some of the results of the genetic testing on the cells that will have valuable info that will determine how we will need to specifically treat the tumor.
We have an appointment this Friday (21st) at Emory to have my staples (yes, Dr. Frankenstein) removed, review path reports, and go over treatment plan options. Jordan has a brand new notepad to write on to start a list of questions for the doctor. We probably will not have much to update medically until after that appointment.
Jackson is improving with his flu/pneumonia. He did manage to give me a stuffy nose and scratchy throat, but nothing major. I went in and did some administrative work yesterday and today, and I'll be back at work treating patients Monday.
Jordan is well when Grier is not kicking and flipping (she is going to be a gymnast). Jordan has continued to be a rock for the family, and especially me. I am so grateful for her and our marriage. We are trusting God daily and know that He is in control and that we are in good hands.
Continued thanks and appreciation from our family to yours for all of the well wishes, prayers, cards, meals...you name it. We feel so loved and continue to be blessed because of you all. We hope you all are enjoying the Christmas season and are blessed. We'll talk soon....
Love,
Reyn, Jordan, Jackson, and Grier
Oligoastrocytoma. Grade 2
We got the call from the nurse as soon as they found out the definitive diagnosis yesterday from the path report. This is a great link that Jordan found discussing the type of tumor:
www.abta.org/secure/oligodendrioma-oligo.pdf
This is a rare one, because there are two types of cells involved, but is still a type of glioma, and is benign. We are still waiting on some of the results of the genetic testing on the cells that will have valuable info that will determine how we will need to specifically treat the tumor.
We have an appointment this Friday (21st) at Emory to have my staples (yes, Dr. Frankenstein) removed, review path reports, and go over treatment plan options. Jordan has a brand new notepad to write on to start a list of questions for the doctor. We probably will not have much to update medically until after that appointment.
Jackson is improving with his flu/pneumonia. He did manage to give me a stuffy nose and scratchy throat, but nothing major. I went in and did some administrative work yesterday and today, and I'll be back at work treating patients Monday.
Jordan is well when Grier is not kicking and flipping (she is going to be a gymnast). Jordan has continued to be a rock for the family, and especially me. I am so grateful for her and our marriage. We are trusting God daily and know that He is in control and that we are in good hands.
Continued thanks and appreciation from our family to yours for all of the well wishes, prayers, cards, meals...you name it. We feel so loved and continue to be blessed because of you all. We hope you all are enjoying the Christmas season and are blessed. We'll talk soon....
Love,
Reyn, Jordan, Jackson, and Grier
Wednesday, December 12, 2012
Still waiting...
It seems the saying is true-- when it rains it pours! Our sweet baby boy, Jackson has been fighting congestion and fever for the past few days so I took him to the doctor today and he has the flu and pneumonia. I felt awful because I had waited to take him, thinking it was just a cold! So please pray for his healing and pray that Reyn does not come down with a fever. We do NOT need any swelling or fever going on with Reyn. So far we feel well so I'm hoping this might be the worst of it!
As far as Reyn goes, still no pathology results. We have been told to call the neurosurgeons office each day to check in and see if they have them. The nurse can go over the basic prognosis with us but we will have to wait until our appointment next Friday, December 21st to go over the full pathology results with the neurosurgeon and have the staples removed from Reyn's head. His incision is healing very well and we even got to wash his hair yesterday! ;). It was a big day!
We still have plenty of decisions to make in the future...one being if we want a 3rd opinion. If we go this route we will likely head to Duke University but we need to know his prognosis first. So thank you all for the prayers, phone calls, and best of all..MEALS! We greatly appreciate it!
As far as Reyn goes, still no pathology results. We have been told to call the neurosurgeons office each day to check in and see if they have them. The nurse can go over the basic prognosis with us but we will have to wait until our appointment next Friday, December 21st to go over the full pathology results with the neurosurgeon and have the staples removed from Reyn's head. His incision is healing very well and we even got to wash his hair yesterday! ;). It was a big day!
We still have plenty of decisions to make in the future...one being if we want a 3rd opinion. If we go this route we will likely head to Duke University but we need to know his prognosis first. So thank you all for the prayers, phone calls, and best of all..MEALS! We greatly appreciate it!
Sunday, December 9, 2012
There's No Place Like Home
Reyn and I made it home around 4PM yesterday after a couple of long days at Emory. We are grateful that the tumor appears to be benign but we still have many questions that need to be answered. Unfortunately it sounds like we may not have the answers to the biopsy until next week. I am hoping we get a call this week but it seems in the medical field that everything moves at a snails pace. At least they are thorough so we do appreciate that! Reyn's staples will be in his head for 2 weeks to allow the incision site to heal completely. For now he is looking for surgical caps to wear to work so he can cover the incision. He is doing great and resting at home. The doctor said he could return to work mid week but thankfully he is taking this week off of work so that he can catch up on sleep and continue to heal. So that is the basic update for now. Once we hear from the doctors I will let you all know. I continue to be amazed at Reyn's outlook and overall attitude. He told me on the way to Emory that this tumor might be the best thing that has ever happened to him. He has such a peace with God right now and just wants to encourage others. I would be lying if I said I haven't had my moments of doubt so I feel that given the events of this morning I must share this story with you.
I went to bed last night and woke up this morning completely pissed off at God...sorry, just no better way to describe it. My thought this morning was... "I guess you hate me God and right now I don't particularly care for You so I guess that makes us even!" I was mad that my 36 year old husband has a tumor, mad that my child woke up early (when I am so exhausted) with a fever and angry that our joy has been stolen by this tumor. We should be celebrating and anticipating the arrival of our daughter and going to Christmas parties- but instead we are hanging out with nurses at 3AM!
As I took Jackson downstairs to eat I flipped on the TV and turned the channel to what should have been the Today Show but because it was early, Charles Stanley was ending his sermon and David Jeremiah was about to begin one. I really wanted nothing to do with God for heaven's sake...that's why I was looking for the news but instead a small voice told me to leave the TV on this channel. So I did and went about my business of preparing breakfast. As I was stirring my child's oatmeal David Jeremiah came onto the screen and said, "Is fear threatening to steal your joy this season?" To which I answered "YES" as I began to cry. His upcoming message was titled "Why Christmas Conquers Fear" so I sat down and recorded his message because it was clear in that moment that God heard my cries and wanted to remind me of something.
He went onto tell the story of Zacharias and Elizabeth. After 400 YEARS of silence from God (from the end of the Old Testament to the beginning of the New Testament) God answered their prayers for a child and it would be John the Baptist. Their story is in Luke 1 if you care to read it. But don't you think they believed at some point they had been forgotten?? Both of them were well beyond child bearing years but God created a miracle in her womb!
Then he went on to mention Hebrews 4:14-16- "Therefore since we have a great high priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.
God does sympathize with us and Jesus is our intercessor. God was just reminding me that He hears me and He keeps His promises. So many times in the Bible fear was a precursor to the blessing one was about to receive. This is true in the story of Christmas, with Mary and the story of Zacharias. So it reminded me that fear is normal. But as Dr. Jeremiah stated- for a Christian fear can visit but it does not move in! The opposite of fear is not courage, but LOVE and specifically Christ's love.
So even though the great deceiver was whispering all kinds of evil and fear over me this morning I know and believe that Christ loves me. He has a plan and ultimately we must trust Him! So today I claim 1 John 4:18 and John 16:33. I hope these verses can offer encouragement to you as well.
1 John 4:18- There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love.
John 16:33- These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I HAVE OVERCOME THE WORLD.
Thank you for your continued support and for allowing me to share our story with you.
Love,
Jordan
I went to bed last night and woke up this morning completely pissed off at God...sorry, just no better way to describe it. My thought this morning was... "I guess you hate me God and right now I don't particularly care for You so I guess that makes us even!" I was mad that my 36 year old husband has a tumor, mad that my child woke up early (when I am so exhausted) with a fever and angry that our joy has been stolen by this tumor. We should be celebrating and anticipating the arrival of our daughter and going to Christmas parties- but instead we are hanging out with nurses at 3AM!
As I took Jackson downstairs to eat I flipped on the TV and turned the channel to what should have been the Today Show but because it was early, Charles Stanley was ending his sermon and David Jeremiah was about to begin one. I really wanted nothing to do with God for heaven's sake...that's why I was looking for the news but instead a small voice told me to leave the TV on this channel. So I did and went about my business of preparing breakfast. As I was stirring my child's oatmeal David Jeremiah came onto the screen and said, "Is fear threatening to steal your joy this season?" To which I answered "YES" as I began to cry. His upcoming message was titled "Why Christmas Conquers Fear" so I sat down and recorded his message because it was clear in that moment that God heard my cries and wanted to remind me of something.
He went onto tell the story of Zacharias and Elizabeth. After 400 YEARS of silence from God (from the end of the Old Testament to the beginning of the New Testament) God answered their prayers for a child and it would be John the Baptist. Their story is in Luke 1 if you care to read it. But don't you think they believed at some point they had been forgotten?? Both of them were well beyond child bearing years but God created a miracle in her womb!
Then he went on to mention Hebrews 4:14-16- "Therefore since we have a great high priest who has passed through the heavens, Jesus the Son of God, let us hold fast our confession. For we do not have a high priest who cannot sympathize with our weaknesses, but One who has been tempted in all things as we are, yet without sin. Therefore let us draw near with confidence to the throne of grace, so that we may receive mercy and find grace to help in time of need.
God does sympathize with us and Jesus is our intercessor. God was just reminding me that He hears me and He keeps His promises. So many times in the Bible fear was a precursor to the blessing one was about to receive. This is true in the story of Christmas, with Mary and the story of Zacharias. So it reminded me that fear is normal. But as Dr. Jeremiah stated- for a Christian fear can visit but it does not move in! The opposite of fear is not courage, but LOVE and specifically Christ's love.
So even though the great deceiver was whispering all kinds of evil and fear over me this morning I know and believe that Christ loves me. He has a plan and ultimately we must trust Him! So today I claim 1 John 4:18 and John 16:33. I hope these verses can offer encouragement to you as well.
1 John 4:18- There is no fear in love; but perfect love casts out fear, because fear involves punishment, and the one who fears is not perfected in love.
John 16:33- These things I have spoken to you, so that in Me you may have peace. In the world you have tribulation, but take courage; I HAVE OVERCOME THE WORLD.
Thank you for your continued support and for allowing me to share our story with you.
Love,
Jordan
Friday, December 7, 2012
Big Day
Our day began at 3:45 this morning because we had to report to Emory by 5:30AM for surgery. Reyn was taken back around 5:45 for all of the prep work and surgery began around 7:30AM. The biopsy only took about an hour but it seemed like a very long hour of waiting! The great news is that the neurosurgeon met with us in the waiting room following the procedure and said Reyn did great! All signs point to a benign (Praise The Lord) glioma so this is good news. There are hundreds of types of tumors so we will know the exact type he is dealing with once we receive the lab results. We are told to expect 4 days until the lab results are complete and returned to us.
I was allowed to visit with Reyn about an hour after the surgery and he is doing great!....being his usual self and requesting Chapstick. For those of you who know him he is slightly addicted to his Chapstick so it cracked me up that this was the first thing he asked for! The surgeons definitely messed up his "hairdo" so he might be sporting a shorter cut here soon. ;)
In the meantime, Reyn will be at Emory tonight and hopefully returning home tomorrow. We are going to take it easy and get lots of rest this weekend! Thank you again for your prayers and support. I will let you know once we have more answers but we ask for the following. Please pray that if radiation is required (which we think it will be) he can have radiation performed at Kennestone Hospital. This would help tremendously with the logistics of drop off and pick up! Pray for no infection and healing of the incision wound. Pray for rest and peace as we wait for more answers and ultimately complete healing!
Love you all.
I was allowed to visit with Reyn about an hour after the surgery and he is doing great!....being his usual self and requesting Chapstick. For those of you who know him he is slightly addicted to his Chapstick so it cracked me up that this was the first thing he asked for! The surgeons definitely messed up his "hairdo" so he might be sporting a shorter cut here soon. ;)
In the meantime, Reyn will be at Emory tonight and hopefully returning home tomorrow. We are going to take it easy and get lots of rest this weekend! Thank you again for your prayers and support. I will let you know once we have more answers but we ask for the following. Please pray that if radiation is required (which we think it will be) he can have radiation performed at Kennestone Hospital. This would help tremendously with the logistics of drop off and pick up! Pray for no infection and healing of the incision wound. Pray for rest and peace as we wait for more answers and ultimately complete healing!
Love you all.
Wednesday, December 5, 2012
Biopsy Day
Hey friends!
Tomorrow is Reyn's biopsy at Emory. It is scheduled for 12pm and should take about an hour. We will not have the full results of the biopsy for 4 days but the neurosurgeon may be able to give us an idea of the type of tumor we are dealing with post biopsy. We have not heard back regarding his most recent MRI but the doctor did promise not to operate if the tumor is missing ;)
Reyn will stay overnight at Emory to be monitored and should be able to come home on Friday. Please pray that the biopsy goes smoothly and for the doctors to have sturdy hands. This is the love of my life they are messing with! We ask for your prayers for strength and peace tomorrow, but most importantly, ultimate healing.
I will update the blog/FB when we have answers.
Thank you for your support!
Love,
Jordan
Tomorrow is Reyn's biopsy at Emory. It is scheduled for 12pm and should take about an hour. We will not have the full results of the biopsy for 4 days but the neurosurgeon may be able to give us an idea of the type of tumor we are dealing with post biopsy. We have not heard back regarding his most recent MRI but the doctor did promise not to operate if the tumor is missing ;)
Reyn will stay overnight at Emory to be monitored and should be able to come home on Friday. Please pray that the biopsy goes smoothly and for the doctors to have sturdy hands. This is the love of my life they are messing with! We ask for your prayers for strength and peace tomorrow, but most importantly, ultimate healing.
I will update the blog/FB when we have answers.
Thank you for your support!
Love,
Jordan
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