Category: Uncategorized

posted by: Callie Priest on behalf of Jonathan and Karla

Jonathan has been recovering beautifully since his surgery a few weeks ago. However he began to experience some symptoms of possible infection last week. Jonathan went for a few tests on Thursday and last night was admitted to the hospital due to a possible infection near his incision. It was confirmed that he does have an infection. Right now Jonathan is in surgery. Jonathan will have another craniotomy today to wash the infection. They will remove the bone flap (the skull), which is believed to be infected. It will be removed for 6 months until the infection is completely gone. Jonathan will be treated with a series of antibiotics for a few months to remove the infection. The hope is that once the bone is treated they will be able to replace it.

As you can imagine this news is very unexpected to Jonathan and Karla. But they trust that this is completely known by God from the beginning of time. They are trusting in Him. Please pray for Jonathan now as he is in surgery. Pray for peace for Karla. Pray for the doctors to remove the infection and for clarity in treatment options. Pray for God to receive glory in all of this.

Jonathan and Karla have friends and family who are helping them at this time and are requesting no visitors. If you have questions, please feel free to email calliep@brookhills.org. We will update you as often as possible. You can follow Jonathan and Karla on their facebook pages as well. Thank you for praying.

Over the last six weeks we have experienced God’s faithfulness in the midst of both receiving good and bad news about Jonathan’s health situation. God is good and able to be trusted all the time. Today we received very good news from the doctors.

After Jonathan’s staples were removed, we met with Dr. Markert, the neurosurgeon, who gave us the pathology report confirming a slow growing tumor called an Astrocytoma Grade 2. This pathology report combined with the post-surgery MRI showing that the tumor was almost completely removed is very good news. Dr. Markert continues to be very pleased with the results of surgery and Jonathan’s recovery so far. On his assessment, he noticed a slight improvement in Jonathan’s field of vision loss. Dr. Markert thinks that it is possible that Jonathan may regain at least part of his field of vision loss as he continues to heal. Next week we will see a neuro-ophthalmologist that will map the field of vision loss and guide us in the potential recovery. Pray that Jonathan’s field of vision would recover sufficiently to drive and resume normal work activities.

Next, we moved to see Dr. Nabors, the neuro-oncologist. He showed us comparative MRIs from before and after surgery and we could see a drastic difference. While in the first MRI you can clearly see a golf ball size tumor, in the post-surgery MRI there is virtually no tumor left. He explained that an Astrocytoma is an infiltrating tumor, which means it is not contained, and has a tendency to recur and/or transform to a higher grade, faster growing tumor. But the fact that it is a grade 2 means that it is currently growing very slowly. Dr. Nabors was also very pleased with the results of surgery and does not see a need for any other immediate treatment. He scheduled a follow up MRI in three months and encouraged Jonathan to gradually resume his normal activities.

As we practiced this week’s memory verse with our kids tonight, we are reminded once more of the hope that we have and proclaim: “God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth gives way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling.” This is our confidence.

May God be glorified in today’s positive report and may we continue to trust Him with our lives and our future. May we say in all circumstances: “Blessed be the name of the Lord.”

It has been good to be home and Jonathan is feeling better everyday. He still has occasional head aches, several medications to juggle, and a significant gap in his field of vision. We still do not know if this is a temporary or permanent loss. But this hasn’t really slowed Jonathan down: on Saturday he had the energy to stop by at Danny’s soccer game, on Sunday we went to church, and today he made me take him into work for a couple of hours… unbelievable!

We are very blessed to have both our moms still with us. Their company and their help with the children and the everyday needs around the house is invaluable.

On Monday morning April 4th we will have a follow-up appointment with both Dr. Markert, the neurosurgeon, and Dr. Nabors, the neuro-oncologist. They will remove Jonathan’s staples, perform a post-surgery assessment, and discuss and determine the best plan of action going forward based on the biopsy results.

May God continue to give us grace to practically live out Philippians 4:4-7 “Rejoice in the Lord always; again I will say, Rejoice. Let your reasonableness be known to everyone. The Lord is at hand; do not be anxious about anything, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all understanding, will guard your hearts and your minds in Christ Jesus.”

As the sun comes up this morning, I have a beautiful view of the Magic City from our 8th floor window in the UAB North Pavilion, but the view inside the room is so much more pleasing to me. Jonathan is feeling better and we are going home today.

Dr. Markert is very pleased with both the MRI results and Jonathan’s recovery so far. He was comfortable to say that in his opinion 98% of the tumor was removed. Jonathan’s discomforts are part of the huge procedure he went through yesterday. He still prefers quiet and eyes shut most of the time, but he has been up for a stroll a couple of times already. All his neurological functions are intact with the exception of his vision field that remains with a blind spot, but we need more time to determine if this is a temporary or a permanent loss.

We will come back for a follow up appointment in about a week and we will discuss biopsy results and next steps then.

Today, please pray for a good transition into our home and good control of pain in the next few days. Pray for our children that are eager to see daddy yet they won’t be able to jump into his lap for several more days. And pray that this situation will continue to open up doors for the Gospel to be proclaimed and God’s grace to be displayed.

Karla

“This God –His way is perfect, the word of the Lord proves true; he is a shield for all those who take refuge in Him.” Psalm 18:30

What a comfort we find in these words.  God’s word has really proven true through these two days in the hospital. I am humbled and overwhelmed with gratefulness and joy for the provision He has chosen to give us today.  But God’s word proves true not only in his faithful provision, but in his promise that He is with us always. We have sensed His presence this week every step of the way.

This morning Jonathan had a new MRI to help determine if there is any residual tumor.  He was also assessed for any loses and so far, part of his left field of vision is the only concern.  But there is a strong possibility that this may be temporary.  He is still very tired, but he is already in a room and slowly feeling better.

Thank you for walking with us. We really appreciate your prayers.  Please keep praying for Jonathan’s recovery process.

Karla

Exciting news: Surgery is over.  I talked with Dr. Markert and he told me we was pleased with the results of the surgery.  We won’t know the specifics of how much of the tumor they were able to remove until tomorrow when he has a new MRI done.  At this point, we will also be waiting for the pathology report that will come in a few days.

Jonathan will be transferred soon to the NICU where he will stay for the first stage of his recovery.  The doctor said he is already awake and talking.  I rejoice so much in those little words.

 

Just received a call from the doctors.  They are in the resection stage (the actual removal of the tumor) and they believe they have already got a good amount of tumor.  We praise God!  Continue to pray for non or very minimal loses.

I literally feel embraced by your prayers today.  There are no words no express our gratitude.  May He continue to receive all the glory as we experience His sustenance and praise His name for His Truth in the midst of this.

Surgery started at 10:15 am.  Jonathan responded well to medication. Thank you for your prayers.

We had a smooth admitting process this morning.  Jon was given his IV and then had an informative talk with Dr. Moore, the anesthesiologist.  Close friends and family were able to spend brief moments with him before he was taken to the OR, and through it all he remained very confident and relaxed.

Now, our waiting period has started. Preparation for the surgery takes over an hour and after that the actual procedure will take around 6 hours.  Over that period of time they will give a few brief updates just to let us know in general what part of the process they are in.  So I will try to keep you posted as I know what’s going on.

Please keep praying for our medical team.  Pray that Jonathan won’t be anxious or uncomfortable during the awake time where they will be mapping and assessing his neurological abilities.

We had a good meeting with Dr. Markert, our neurosurgeon this morning.  He explained the surgical procedure and recovery process to us and he also encouraged us by explaining that the tumor is accessible and that he thinks he can get a good part of it removed. Tomorrow morning at 5 am, Karla and I will head to the hospital to be admitted and surgery will start around 8 am.  We expect the surgery to last for several hours and we do not expect to have much to update until late afternoon going into early evening.  We are planning for this blog to be the primary and quickest means to give you any updates that we may receive.  In light of this we thought it may be beneficial to let you know how we are praying through this time and invite you to join us in this journey.  As we both humbly and boldly approach God in prayer we want to share that we do not believe that prayer is a means to try and convince God to do what we want him to do.  Biblical prayer is God’s means to make our request known to Him and to align our desires and hopes into His perfect plan for our lives.  This journey with a brain tumor is not the path we would have chosen for our lives nor is it an easy or comfortable ride, but we trust that God’s way is always best and we will be faithful to walk forward in the strength and presence that He provides in our lives.

Some specific ways to pray tomorrow:

Pray for the medical team that will be involved in tomorrow’s surgery.  Dr. Markert (Neurosurgeon), Dr. Jennifer (Neuro- physicians assistant), Andrea (nurse) Christof (resident), the anesthesiologist) and other medical professionals that will be a part of the surgery.

Pray that the mapping will go well and that the doctors will identify and remove as much tumor as they can find.

Pray that that there would be no temporary or permanent losses to Jonathan’s field of vision, motor or verbal skills.

Pray that God will give strength to Karla and family as they walk through the time waiting for news.

Pray for a fast and complete recovery process both after surgery and in the days to come.

Pray that the pathology report would confirm a slow-growing non-cancerous tumor.

Pray that this would be an opportunity for God to display the Gospel and His Glory.

We are confident that God is sustaining our family and we are thankful for the many ways His church has been supporting us through their presence, generosity and prayers.

 

Many people have been asking for an update on the medical situation as we move closer to surgery on March 22.  Honestly, we have been reluctant to put too much information out there because it is constantly changing and we are constantly learning more.  But, we want to keep you as well informed as possible so you can walk this journey with us through your prayers and support.

We are currently scheduled for a pre-surgery meeting with Dr. Market at 8:30 am on Monday, March 21.  We hope to come out of that meeting with even more specific answers to many of the questions still running around in our heads.  We are very thankful for Dr. Market’s expertise and patience as we battle the up hill learning curve of new medical terminology and the complexities of neurology.   So, here is what we know at this point.

Surgery:

Early Tuesday morning, March 22, we will arrive at UAB hospital for admission.  Dr. Markert will use all the data gathered from the Functional and Spatial MRIs with a Guided MRI in the operating room.  This type of surgery typically last between 4-6 hours.  They will cut a panel of bone out of the skull to access the brain.  Once they have arrived at the location of the tumor they will wake me up and stimulate various parts of the brain to further confirm areas of tumor and areas of active brain matter.  The tumor sits on the right side of the brain in the visual cortex so they will test field of vision, left side motor skill, as well as verbal and other cognitive skills.  Once that is done, I will be put back to sleep and they will remove as much of the tumor as they can with as little impact to brain function as possible.  Then they will reattach the bone panel to my skull with a titanium plate at the close of surgery.  Coming out of surgery Dr. Markert should have a pretty good idea how much of the tumor he was able to remove, but this will be most clearly known the next day when they do a follow up MRI.  According to the imaging the tumor has both a node and it is diffused into the surrounding brain tissue so they do not believe it is possible to remove all of the tumor.  Tissue samples of the tumor will be sent off to pathology to determine the grade and type of tumor.  We have been told that the official report from pathology will take 3-5 business days, but we hope the doctor will give us an idea of what they think the tumor is based on what he sees in surgery.

Recovery:

Although everyone responds differently and each case has its own variables, in a “best case scenario”, we have been told that patients may typically go home 48-72 hours after surgery.  If there are temporary losses in vision, speech, and/or motor skills, then they will begin immediate rehabilitation that will prolong the hospital stay.  Continuing a “best case scenario”, home recovery should last between 7-10 days with increasing possibility to be up-and-about and restrained activity based on how I am feeling and responding to medication.  This leads to the post-operative doctor’s visit with Dr. Nabors (our Neuro-oncologist), probably 10-14 days after surgery where they will remove the staples and review the pathology report.  At this time we hope to really know what kind of tumor we are dealing with and determine a plan forward.  Until now we have been told that the tumor appears to be a low grade, slow growing tumor, but then based on the tissue sample they will be able to tell us if that is the case or if we are dealing with something more aggressive.  This post-operative meeting will be key for us to understand what our reality will look like in the coming months.  As far as recovery from surgery is concerned, we have been told that in a “best case scenario”, I should be able to resume full personal and professional activity 3-6 weeks after surgery.

Prayer:

Leading up to the pre-surgery meeting on Monday March 21, please pray that Dr. Markert would receive and review the CD with all the data gathered from the Functional MRI taken at Emory University Hospital.  It is our understanding that he has seen some of the images, but as of last week, he had not received the actual CD.  We are confident that Dr. Markert will get all the information he needs prior to surgery, but it would be reassuring to us if we can include this information in our discussion about the plan for surgery with him on Monday morning.

Ultimately, we know and trust that God is in control of what we know and what we do not know and even in control of what the doctors know and what the doctors don’t know.  We are in His hands and He knows exactly what lies ahead for us on this journey.  Our confidence is in Him.  Pray for us as we step forward in faith through the next key days.