Author: EyesOnTheUnseen

Thank you for being so patient with us as it has taken us a while to give an update on Jonathan’s health condition. There is a lot to share, so here we go.

Since we left the hospital in mid-June, Jonathan has continued to recover very well. Slowly, he has begun to resume normal activities -from work to playtime with the kids 🙂 In the meantime we have visited each of his doctors for follow up appointments. The first one was the doctor treating the bone infection. About three weeks ago Jonathan finished his course of strong antibiotics and the doctor felt confident that the infection should be resolved. On July 11, Jonathan had the MRI that had been originally scheduled as the follow up for the brain tumor resection. The MRI came back “clean”, meaning no visible signs of tumor or infection. The doctor was clear to say that only a massive infection would show, but so far no other problems had presented in the area of infection. So we take that as confirmation that infection is indeed gone. Thankful.

Next, we have blood clots. God directed us to a great internist that has been monitoring this issue along with Jonathan’s general health. Every week o two she reviews his blood levels and adjusts his medication as needed. He is still in blood thinners but this past Friday the doctor said she won’t check his levels until next month when they will also perform an ultrasound of his arm to see if the clots have dissapeared. The doctor is hoping to discontinue blood thinners soon after that. So, we can say that there is great improvement in this area also.

The other big issue we are dealing with is the DRESS syndrome. Last month the Dermatologist told us that she would continue to check Jonathan’s internal organs every month until his levels were back to normal. Back then, she was expecting to “release” him in December. Well, we went for a check up yesterday and as she entered the office to meet us, she told us with a big smile that Jonathan’s levels are completely back to normal and that she won’t see us again -unless we needed her, because she does not expect the reaction to recurr. She explained that it may take up to six weeks for Jonathan’s body to completely recover from this, but that seems like nothing after hearing that most likely DRESS syndrome is also gone. Today, Jonathan is officially off steroids. That is another incredible gift from God.

As we see things right now, the next steps are to make sure that the blood clots are dissolved, to discuss with neurology doctors a replacement for Jonathan’s piece of skull, and to fervently pray that tumor will never come back. The next MRI is scheduled for October, please join us in prayer that it will show no tumor at all. We depend on Him.

With thankful hearts we continue to put our trust in the One that is sovereing above all things. He is the source of our joy, our confidence, our strength, and our hope.

“Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze.” Isaiah 43:1-2.

A whole lot has happened medically and personally since the second surgery on May 13 to remove the piece of skull that got infected as a result of the first surgery. It has seemed at times that one complication has led to another in a snowball effect toward my deteriorating health.
We are humbled and thankful for the way that many of you have faithfully walked alongside us through your prayers and support. In light of how you have shared this journey so closely with us, I want to share a pretty transparent window into how this has impacted us personally and emotionally.
Monday night, June 13, was definitely the most difficult point in this journey so far. The doctors had given me another dose of the antibiotic that was causing several of my body systems to react violently. I was running high fevers that medicine was not able to break through. My skin was bright red, burning, swollen, and itching uncontrollably. My lymph nodes were reacting and several parts of my body were swollen almost unrecognizably. My liver was also reacting and the doctors were concerned that the reaction might spread to the lungs or heart. A family friend, who has prayed for me since I was a small boy, sent me these verses in Psalm 69:
1 Save me, O God! For the waters have come up to my neck.
2 I sink in deep mire, where there is no foothold;
I have come into deep waters, and the flood sweeps over me.
3 I am weary with my crying out; my throat is parched.
My eyes grow dim with waiting for my God.
6 Let not those who hope in you be put to shame through me, O Lord GOD of hosts;
let not those who seek you be brought to dishonor through me, O God of Israel.

I could definitely identify with the writer’s distress in calling out to God to rescue him and I was feeling overwhelmed by the tide of medical complications that were bombarding me. I had come to the end of my physical and emotional strength. That night Karla and I prayed that God would intervene. In the middle of the night and early the next morning, God began to act through doctors, medicine, and His sovereign hand to rescue me from this desperate situation. The next morning I awoke and it was immediately evident that I had turned a corner. Although the road to recovery continues to be a long one, there was a moment when it was clear that recovery from the allergic reaction had begun.
Throughout that next day, Karla and I continually reflected on God’s goodness. After a day of seeing improvements, we were incredibly thankful for God’s act of kindness in rescuing me from this difficult situation. God’s act was based nothing on what I had done, but solely on His grace and mercy. As I continued to reflect on this journey I was reminded of scriptures about God’s presence with his people through all of life’s circumstances. That evening we began to confess to one another, and to God, that our natural state is to respond to pain/difficulty/suffering/hardship in fear and worry. We know that God is in complete control of everything in our lives, yet little by little, we begin to doubt and believe that we must try to be in control of everything. Did the doctors do this or that? What will happen to the kids if…? How can I make it through…? The list can go on and on. We quickly turn to fear instead of resting completely in God’s control and God’s presence. Only God can release us from fear to faith. We asked forgiveness for the ways in which we had not trusted in His complete goodness and control of our lives. We asked forgiveness for the ways we had allowed ourselves to respond in fear instead of faith. God, again, released us to freely trust in Him and know the peace found in His presence.
This is the essence of the good news found in Jesus Christ. We must continually be reminded of this Good News, throughout all of life’s circumstances. We were utterly lost in our sin, blinded and given over to fear, unable to rescue ourselves. But God, rich in mercy, reached down and demonstrated His love for us by making the just payment for our sins through the sacrifice of His son Jesus Christ. He conquered sin and death and thereby made a way for man to be restored to right relationship with His creator. The urgency for each of us is to turn away from fear and from our own attempts to control life and instead turn to Him in faith, trusting solely in His righteousness. When we turn to Him in faith, this becomes the turning point in our lives that brings us out of death into His glorious light. But the road to recovery from sin and fear is a long one in which we must continually turn to him and trust him in all of life’s circumstances. By God’s grace, He continually rescues us from ourselves and walks with us enabling us to trust Him no matter what we might face. This reminded me of Psalm 40:
1 I waited patiently for the LORD; he inclined to me and heard my cry.
2 He drew me up from the pit of destruction, out of the miry bog,
and set my feet upon a rock, making my steps secure.
3 He put a new song in my mouth, a song of praise to our God.
Many will see and fear, and put their trust in the LORD.

We are incredibly thankful for a God who hears our cries. We have been eternally rescued from the pit of sin and placed upon the rock of salvation through Jesus Christ. God continues to rescue us from our pain/difficulty/suffering with His power and presence. He turns our fears into faith. May we sing praises to the King forever!

When Jonathan was first diagnosed with a brain tumor, a good friend gave me a Scripture verses calendar that has encouraged us many times during the last five months. I don’t look at the verses every day, but unfailingly, the verse that I read has been appropriate for whatever we are going through that day – mostly reminders of God’s promises.

This past Sunday, as Jonathan and I were rejoicing in his recovery, I read the verse for the day: “For, lo, the winter is past, the rain is over and gone; the flowers appear on the earth; the time of the singing of birds is come”. Song of Solomon 2:11-12.

We have been back home for over ten days now. Last Friday and Monday we had three follow up appointments; the reports from the doctors where very encouraging. We first went to see the Infectious Disease doctor that is treating Jonathan’s bone infection or osteomyelitis. He was pleased to see the results of the labs and told us that he just needs to finish the course of antibiotics – 9 more days. After that Jonathan should be DONE with antibiotics. The head MRI originally scheduled for July 11 should confirm that the infection is totally clear. On Friday, we also met with the internist to follow up with the blood clots that formed around Jonathan’s PICC line in his right arm. She was very thorough and carefully looked at Jonathan’s overall health. She helped us understand that Jonathan is coming out of a very acute stage and now most of his levels are going back to normal. There are some levels that are still temporary off due to medication, but she will be following those closely until they normalize. Jonathan will continue on blood thinners to complete 3 months of treatment and the internist will monitor blood work every week for dosage adjustments. Thankfully for both of us, I no longer have to give Jonathan blood thinner shots in his stomach twice per day. We are both glad to be past that treatment.

On Monday, we went to the dermatologist who is taking care of the DRESS syndrome. She was also very pleased to see Jonathan’s labs. Once more, she explained that this reaction (DRESS) is very severe and could potentially flare back up in the next few months involving other organs (heart, lungs, kidneys, etc), even without being exposed to the medication that caused the original reaction. For this reason, she won’t release Jonathan until he has completed six months of monitoring without any problems. She encouraged Jonathan to gradually resume normal activity, but to take any unusual symptoms very seriously.

So, after these visits, you can see why we were so encouraged by the words in Song of Solomon. We feel like we are moving towards a more steady recovery now. Jonathan is feeling so much better and his energy level is also improving every day.

We want you to know that we not only appreciate your prayers, we trust that your prayers have been a pleasing sacrifice to the Lord. We pray that He is revealing Himself to you as He is to us. We pray you will proclaim his faithfulness and His powerful deeds continuously every opportunity you have. He has intervened in this situation and He is using it for His glory. His goodness is the same, in sickness or health. But today we celebrate the healing process and we know you celebrate with us. “Oh, give thanks to the Lord, for He is good; His love and His kindness go on forever” – 1 Chronicles 16:34.

Please continue to pray for what is ahead.
– Pray that the DRESS syndrome won’t come back and that Jonathan’s body will continue to get stronger.
– Pray that Jonathan’s MRI on July 11 (originally scheduled as the follow up for the brain tumor resection) will clearly show NO TUMOR and no sign of infection left in Jonathan’s brain.
– Pray that he will resume normal activities at the pace he needs to and that God will multiply the work of his hands for His glory.

Wednesday night Jonathan said: “if someone wrote a case study about all the medical issues that are going on right now, nobody would believe it”. This is why. After the miraculous breakthrough he had the day before, on Wednesday we found out about another complication. Tuesday night the doctors had told us that Jonathan’s new medications are available in an oral form, and that they would remove the PICC line that was placed a month ago to administer his antibiotics. The plan then was to send us home on Wednesday morning after watching him one more night and removing the PICC. Wednesday morning Jonathan woke up with severe swelling on the arm with the PICC line. An ultrasound was ordered to make sure no blood clots had formed – because that would only complicate things… Well, blood clots had formed, so instead of going home, Jonathan had to be put immediately on blood thinners, adding a new delicate issue to the list. This new part of the treatment involves injections in his belly for a week and then transitioning to a pill with weekly monitoring of his blood for three months.
So, let me see if I can summarize this case study for you: It all started with a brain tumor. Surgery to remove the tumor led to bone infection. Antibiotics to treat the bone infection led to DRESS. And now the PICC line to administer all the drugs led to blood clots. We have not even made it to our three-month-post-tumor-resection follow up appointment and we already have the rest of the year covered with treatments and appointments with three other doctors.

But God continues to be faithful and as we meditated together on all these things, He led us to Romans 8. I just want to share some of the verses that God used to speak to our hearts:

“For in this hope we were saved. Now hope that is seen is not hope. For who hopes for what he sees? But if we hope for what we do not see, we wait for it with patience. Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the Spirit himself intercedes for us with groanings too deep for words…

Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword? As it is written, “For your sake we are being killed all the day long; we are regarded as sheep to be slaughtered.” No, in all these things we are more than conquerors through him who loved us. For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers, nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.”

Our confidence is this: God is with us and in sovereign control; with or without brain tumor, with or without bone infection, with or without DRESS, with or without blood clots. Ultimately, we have been healed and will eternally walk in His presence.

We were discharged from the hospital last night. All medications in place and Jonathan feeling a lot better. The next days and weeks we will have to take it easy and continue to recover. He will be monitored through blood work and clinical examination and during that time we’ll try to be diligent to let you know how God continues to use this.

As we are rejoicing in how God has intervened to improve Jonathan’s health, we are also reminded of those who are in distress. Jason, Jonathan’s brother and his wife, Alison are now facing the difficult road to see Alison’s father in critical condition after he had a massive stroke two days ago. We are aware that you know of many others like this that continually need to be lifted up as well. As you pray for other, please include Jerry Suchman, his wife Susan and Jason and Alison’s family tonight.

I closed my eyes last night with the assurance of God’s Word in my heart: “His mercies are new every morning”.viagra We have said many times that prayer is not a vending machine. God is not obligated to answer our requests based on how “good” we are or even how much we pray. God extends His grace through our prayers to display His glory in the same way that He allows us to go through difficult times with the same purpose; to display His glory.
Today, God, out of His infinite mercy and grace, has chosen to let us see a miracle in Jonathan’s life.
Last night Jonathan received a first dose of steroids as the beginning of a long term treatment for DRESS Syndrome. I was fearful to see more medicine go in his body, and at the same time I was excited about the possibility that the medicine would be helpful. This morning he woke up already showing wonderful improvement. His face, ears and neck were not as swollen, his temperature was back to normal, he had an appetite; three good signs. Throughout the day, he has continued to feel better. Especially because the itching and burning of his skin have reduced considerably.
We had the visit of his four doctors: his neurosurgeon, the ID doctor treating the bone infection, the dermatologist that will treat DRESS, and the hospitalist that has taken care of us during this weekend. All of them agree with the treatment that Jonathan will get in the next months and they were also pleased to see Jonathan responding so well to it. His internal organs and levels are not back to normal yet, but they have not gotten worse. He will be followed up closely to make sure that also gets better and no other organs get involved. But for now, the doctors feel comfortable with us going home soon. We are in awe. We praise God for His sustenance and provision once more. We are humbled and filled with gratitude for this amazing breakthrough and we want to thank each of your prayers on our behalf – the Lord has heard them. May He also use those personal times with Him to bless you and grow you closer to Him.
We know our reality still involves brain tumor, osteomyelitis, and now DRESS, but we rejoice in the blessing of today. We will keep walking this road with our confidence placed in the One that knows us completely and has our days in His hands.
Thank you for the encouragement of your words. They have been God’s balm to our souls.

Dear friends,
I want to thank you for your prayers and the love you constantly pour out to our family. Our journey is not yet smoothing out, but instead getting rockier for now. Earlier this afternoon we had the visit of the Infectious Diseases doctors who brought a bad report on Jonathan’s health. The report was later confirmed and further explained to us by the Dermatology doctor who is the expert on this case. They believe that Jonathan has developed an extremely dangerous, even life threatening allergic reaction called DRESS Syndrome. This is a severe reaction to medications that involves several systems in the body. The characteristic rash with swelling and fever is just one of them. Jonathan is also showing abnormal liver function and inflammation of the lymph nodes. All consistent with DRESS. The reaction is not easy to diagnose or to treat. Especially because it’s not easy to determine what specific medication is causing it. Right now the doctor’s strongest lead is Vancomycin. The situation gets complicated because we are only in the middle of treatment for Jonathan’s osteomyelitis (bone infection). And because he is taking anticonvulsive drugs as part of his brain tumor follow up. So we can no just stop all medications to only focus on DRESS.
The treatment for this new situation is a long term use of steroids. But there is a specific way to give those to prevent further problems. So, in conclusion this is not easy, nor short term. For now, we will remain in the hospital until diagnosis and treatment are well established.

I need to confess that hearing these news just got me hard. It is very difficult to see Jonathan hurting. It is hard to grasp the gravity of this illness without feeling scared.

We need to be dependent on God. We need to keep trusting Him. His nature, His love, and His purpose don’t change. He remains being good, He still cares for us, He still wants to use our lives.

Please continue to pray. Pray for healing and patience for Jonathan. Pray for wisdom and discernment for our doctors. Pray that God will use this to shape our children’s faith. Pray for our parents and closer friends as they support us. Pray that I will be a true helper for my husband. Pray for opportunities to share the Truth to a world whose hurts without Christ are without hope. And pray for everything else that the Spirit prompts you to pray as you walk with us on this journey.

Saturday morning Jonatham woke up to a very severe rash again. This time worse that before. His symptoms, including fever and nausea continued to worsen despite medicine, so by noon the doctors told me to take him to the ER to be evaluated there. As we were leaving the house to go to the ER, Jonathan felt very ill and began to vomit. The day before he almost passed out during one of his tests, so I decided to call the ambulance rather than risking him fainting in the car. At the ER, they repeated all the tests done the day before and in the evening we were transfer to the hospital for admission. Later last night the doctor came and explained that Jonathan’s white blood cell count was getting back up, but now his liver was showing abnormal numbers. They ordered an ultrasound. The doctor decided to put Jonathan back on Vancomycin, the medication that had caused the first reaction. We expressed concern, but he felt it was important to keep him covered for the osteomyelitis. He even gave two antihistamines along with the drug to reduce the possibility of a reaction. It didn’t work. Only a few minutes after the infusion began, Jonathan’s started itching and burning all over his body. His rash flared to bright red and got very hot, even to the touch. Not only was he extremely uncomfortable but he began to swell, so they stopped Vancomycin. A very unrestful night with high fever and much discomfort followed.
This morning the rash had completely covered his body. Literally from head to toe. They keep administering antihistamines, but nothing has helped much.
In the midst of all of that, they took Jonathan to have an ultrasound of his liver that actually revealed that his liver was ok, but showed a small cyst in his pancreas. Really? More bumps?
An Infectious Diseases doctor and a hospitalist came before noon and shed some light on the past 30 hours. They think the rash is definitely an intolerance to antibiotics. The most difficult part of this is that there are four main antibiotics usually prescribed for the specific type of infection Jonathan has. He is now allergic to all of them. The better part of it is that there are some other options. Not your first option, but still good and hopefully effective. They decided to start the new antibiotic and so far there is no apparent reaction. They also explained that the small cyst in pancreas is most likely unrelated to this situation and most likely not concerning, but they went ahead and did a CT scan to make sure. We haven’t heard results yet.
Tonight, the rash is still very bothersome. As we pray that it will subside, we are reminded of Job’s words in the midst of his troubles, “I know that my Redeemer lives”.

He lives and He is with us.