Ups and downs

 

Friday. Jonathan was feeling a little better as he woke up. After three days of antibiotics, we felt that the treatment was working and we would be starting oral chemo over the weekend. We headed to the hospital to receive his IV chemo. He rested in the afternoon and then he perked up and had dinner and a fun evening with our small group and our family visiting from out of town.

Saturday. Not too bad. We had more dear friends visiting and Jonathan had a few hours chatting and interacting with them in the late morning. He rested in the afternoon, but his GI discomfort got worse and it took away his appetite, so by dinner, we started doing shakes to supplement his diet in the hopes that he would get enough nutrition to get him ready for treatment. Saturday was not a fun day for his belly, but we were able to complete the around of antibiotics and felt hopeful.

Sunday. We ventured to church and felt incredibly blessed. Both, the Word preached and the music were worshipful, fitting, and encouraging. Our pastor led us to pray for one another and we came forward. It was a emotional time of candid petitioning and genuine Christ-like love. After church, and with full hearts, we gathered around the table for lunch with our extended family. Jonathan enjoyed the time, but not for too long. He felt nauseous and exhausted and had to sleep for the rest of the day. We had hoped to start chemo that night, but he couldn’t.

Monday. We kept trying to do everything possible to improve Jonathan’s diet to accommodate for good nutrition and to provide relief from the acid reflux sensation that has been aggravating him so much. It seemed to work, and even though his energy was very low and he was only awake for a few minutes around meal times, he was able to eat some breakfast, and a some lunch, but by dinner his stomach couldn’t hold anything anymore. At that point, his doctor determined to press the pause button on tumor treatment to let Jonathan get more stable. That was concerning, considering the critical area affected by the tumor, but indeed a necessary measure.

Tuesday. Both, Jonathan’s energy and his appetite were quite low from the start of the day. He slept all day, he had GI discomfort, a headache, and was only able to drink a couple of shakes for meals. His exhaustion were so severe that he choose to speak little or not to talk at all. He was no longer resting, he was rather lethargic. By late afternoon, it was decided that he needed to be admitted to the hospital to make sure he get proper hydration and to determine what exactly is causing all of his discomforts and how to help him.

BUT GOD. In the middle of these stressful days, the Lord’s provision has been faithful and plentiful. Our Elders have brought meals, friends and family have traveled hours only to hug our neck, keep us company, and run errands for us. Jonathan’s mom arrived in town Sunday night and she is helping around the house and with the kids -they are in excellent hands. Our small group has been a source of support, strength, and key help on decision making.  Friends, from both church (Brook Hills) and school (Westminster) are helping with meals, cleaning, playdates, school supplies, and coordinating carpools for the beginning of the year. Notes of encouragement in the form of texts, phone calls, emails, and cards. And then, the most important gift, your prayers! Each time someone tells me they are praying, I feel the Lord whispering in my ear, “I love you”. Thank you. How would we do this without you? You are God’s hands and feet. Literally. Will I ever be able to pay you back? I trust the Lord will and I desire to take the opportunity to show this kind of love to others.

Please, continue to pray for healing for Jonathan.

Pray for wisdom for the doctors and for clear leads to figure out how to help Jonathan.

Pray for our children. The seriousness of their dad’s condition is now dawning on them.

Pray for our hearts and minds to be anchored in God’s truth and for us to run to Jesus with all our feelings -even the ugly ones.

We are now bleeding into Wednesday. Jonathan has had two bags of fluid, labs, and they are doing scans and ultrasounds. Hospitals don’t sleep. Jonathan has remained asleep through all of it it. Thankful for both.

I’ll keep you posted as the day goes by and I find out more.

Treatment Ahead

O God, you are my God; earnestly I seek you; my soul thirsts for you; my flesh faints for you,a s in a dry and weary land where there is no water.  Psalm 63:1

I am so grateful for the book of Psalms. Perhaps nowhere else in the Bible can we see such a wide spectrum of emotions. From joy to lament, the Psalms reassure us that God sees our raw humanity and He gives us freedom to run to Him just as we are. What a comfort to know that our emotions are not a threat to God’s presence, but an invitation to meet with Him! And He meets with us.

My soul will be satisfied as with fat and rich food.  Psalm 63:5

Today was a better day for Jonathan. We are encouraged by this improvement and we are grateful for our doctor’s decision to wait on chemo and treat for a stomach infection.

We met with the radiation oncologist today and he confirmed that the tumor has moved to a very crucial area; the brain stem. He thinks that we still have a window of opportunity to radiate this area before the tumor goes deeper in the stem and the damage is worse. This is a very scary scenario, but we continue to see God’s hand. And having a plan of treatment is an incredible provision. He will have 10 radiation treatments starting next week – similar to what we did back in February.

Tomorrow Jonathan will have his IV chemo as scheduled. This is the chemo that he has had every two week since December 21. Thank God, this chemo has never given him strong side effects, other that fatigue for a couple of days following the infusion.  Pray that his body will tolerate it well as it has done in the past.

Saturday, he will finish the course of antibiotics and at that point, his oncologist will evaluate if he is ready to start the oral chemo. Please, continue to pray that his stomach will heal completely and that he will be as strong as possible to take the chemo.

God has sustained us and continues to pour His blessings in many ways.

My soul clings to you; your right hand upholds me.  Psalm 63:8

We love you and so appreciate each one of your prayers.

Quick Update

Thank you for your prayers. God is sovereign over everything. He knows our past, our present, and our future. Yet, He delights in the prayers of His children. Prayer grows our faith and our relationship with Him.

A quick update – Jonathan did not start chemo as planned. Because of the increased discomfort on his stomach, yesterday afternoon his doctor sent an order for him to take a course of antibiotics to try and improve his overall health before starting chemo.  We have seen a slight improvement today. He is still very tired, but has had more and longer awake times. He had a couple of visitors today and enjoyed that time. We are hoping to see even more improvement by this evening.

Tomorrow, we have an appointment with his radiation oncologist to evaluate if he can/should take more radiation as a part of the current treatment.  And then, Friday, he is scheduled to receive the every-two-week IV chemotherapy that he has been taking since December.

Continue to pray for a miraculous healing; either gradual or overnight. God is able.

Specifically, pray that the antibiotics will be beneficial in combating whatever has made his stomach sick.

Pray that his strength will improve significantly over the next couple of days so that he will be ready to start the oral chemo.

Pray for wisdom concerning additional radiation.

 

Honesty and Hope

This morning, during a short devotional time, the Lord reminded us that the Word of God never denies reality. The Bible is honest about the brokenness of this world and yet it is full of the glorious hope we have in Christ. Paul David Tripp says:

“The honesty does not crush the hope, but neither does the hope negate the honesty”

We truly need to be reminded of this in the middle of a difficult situation.

Over that past 36 hours Jonathan has not felt good at all. We believe that his body may still be recovering from the gastroenteritis he got in Mexico. We are focusing on helping his stomach to get healthy and balanced again, but his overall ache and discomfort is not allowing him to stay awake for more than a few minutes at a time. He was supposed to start his new oral chemo last night, but he simply couldn’t do it. We are praying and hoping that he will start feeling better soon. We know it is important to start taking the medicine.

On Friday, his lab work showed that his levels are good. We are encouraged by that. God is protecting Jonathan’s body, but his energy is gone and it is hard to tell what exactly is causing it, and what else we can do to help him.

Please, pray for a miraculous recovery of his digestive track and for strength to start the new chemo.

Pray for wisdom as we continue to navigate these difficult days.

Pray that our hearts will NEVER lose hope. That the glorious gift of the life, death and resurrection of Jesus will keep our eyes and hearts fixed on Him in the midst of the reality we face.

We are not alone.

Home Front: What we tell the kids and the beauty of a godly wife.

One of the most common questions on days like today is, what do you tell your kids. For starters, we have a very open and ongoing conversation about medical realities and implications of my health journey, so we process out loud with them on a regular basis. Today, as soon as we got back from the hospital, we all climbed into the bed and I began by reminding them that God reigns and rules both, when we receive good news and when we receive bad news. He doesn’t love us more or less, but He is present with us in all of it, and we can always trust Him. So we told the kids that the tumor is growing into a very dangerous part of the brain and that this might cause worse side effects on the left side of my body, and that we will start more chemo and maybe radiation. We told them that I might get sicker in order to try and make me better. We asked them if they had any questions about this, and then, we listened to them.  Ultimately, we trust that even my journey with brain cancer is divinely chosen to be a part of their journey in life as well. So we pray for God to give us the strength, and we pray for God to heal because we know He can and He does both. Then, we tried not to suffocate them and let them talk about it at their own pace. I am not prescribing this for everybody else, I am just honestly answering the question what do I tell my kids. The only thing I would advise is to ground them in the truths that God is in control of all and that God is good.  Those are anchors for all of life. And then, show them that you believe it even when it is hard.

I have been married to a beautiful and godly wife for 17 years and yet there are some things that have been more clearly revealed through this difficult journey with brain cancer. Today, I watched Karla process this news and its implications for her. I watched her joyfully accept that this meant greater responsibility in caring for her husband who would have greater physical limitations while battling with cancer.  I watched her joyfully accept this as the journey that God has us on together. I watched her patiently push me around in a wheelchair, wipe my drooling face, and oversee the workers putting handicap accessibility bars in our bathroom; things that I wish were not part of her daily reality.  Today, I watched her tell her principal that she could no longer come back and do the job she loves (Latin teacher) and the school she loves (Westminster) because she needed to prioritize caring for her husband and family and couldn’t do both well.  Today, and just about everyday on this journey, I have watched her put others’ needs before her own; a beautiful reminder of Christ’s love for us as we see in Philippians 2. So, although today’s news has been hard, and I am sure that the journey forward will be harder, I am thankful that in the mist of the journey God opens up our eyes to see deeper. And today I have been reminded of the beauty of a godly wife. Thanks, Karla. I love you with all my heart.

~Jonathan

 

Flexible

Years ago, in one of our first mission trips together, Jonathan taught our group a simple little way to remember a big important principle in life. During a training session in preparation for the trip, he placed a rubber band around his wrist and as he stretched it back and forth, he said: “we are preparing in the best way we can, but when we arrive on the field, we will have to remain flexible.” I think I have carried that idea in my heart ever since, and God has used that rubber band image numerous times to remind me that I am not in control.

Yesterday, we were scheduled to fly to Portland to spend 8 days with the entire Bean clan. Our plans changed last minute.  We arrived from Mexico Thursday night and Jonathan was not feeling well at all. He got food poisoning during our second day in Mexico and spent most of his days in bed. His left side got even weaker and we ended up having to use a wheelchair at all times. His energy was depleted, he slept a lot, and unfortunately he also fell a few times. By Saturday night, after not seeing much improvement, we called his doctor and he advised to move the next MRI up to this Wednesday, July the 12th.

We have had to remain flexible, for sure. We are making adjustments in our home like adding handicap rails in the bathroom, and we are learning to use a wheelchair. In the middle of these hard realities, God remains always faithful, provider, comforter, strong, sustaining. We have had many of you call, text, and pray for us constantly. Thank you. The Lord is using you to encourage us greatly. Over the last 24 hours, Jonathan has been able to eat better, work some, and has felt less exhausted in general. We are encouraged by this.

Please, continue to pray with us tomorrow. We beg the Lord for a good report, and for hearts that rest in Him regardless. We trust in His goodness at all times. We are so grateful that we can bring all to him; our feelings, our joys, our hopes, our fears. His arms are big enough.

 

Update & July travels

On May 31st, Jonathan had an MRI after we called the doctor to inform that he was experiencing a regression in the mobility of his left side. The MRI was not conclusive. The images showed “something”, but our oncologist felt very inclined to say that the spot looked more like a necrosis (dead tissue) caused by the radiation treatment, than like tumor growth. We waited a little over a week to receive confirmation from the radiation oncologist who agreed with our neuro-oncologist’s opinion. That is where we are. We will have another MRI on July 19th and we are hoping that at that point the doctors will explain the effects of having a necrosis and the steps we need to take concerning that.  In the meantime, Jonathan will continue getting a chemo infusion every two weeks. We are extremely grateful that the side effects of the chemo remain minimal. Jonathan’s mobility and control of the left side of his body is very weak and it makes everyday tasks difficult, but he is pressing on and he is trying to keep the routines of life and work as normal as possible.

This past Sunday, he had the opportunity and the privilege to preach at church. Both, the preparation and the actual preaching were challenging since Jonathan can’t type nor can he stand on his feet for more than a few minutes at a time. In addition, Saturday morning he sprained his ankle badly as a result of his limited mobility to walk.  But, God’s grace and faithfulness was evident. Jonathan was able to preach three times. What a wonderful gift!

“My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.

You can watch the sermon here: Play

During our last visit, the doctor encouraged us to keep our travel plans for July.  Jonathan will go for his chemo infusion this Friday and on Monday we will travel to Mexico to spend a few days visiting family. We will come bak in time for another chemo session and then we will join the extended Bean family for a trip to Portland. We are excited, yet we realize that the pace of these trips will be different.

We keep walking in faith, constantly reminded that our lives are hidden in Christ. He is our stronghold.

In you, O Lord, do I take refuge;
    let me never be put to shame;
    in your righteousness deliver me!
Incline your ear to me;
    rescue me speedily!
Be a rock of refuge for me,
    a strong fortress to save me!

For you are my rock and my fortress;
    and for your name’s sake you lead me and guide me;
you take me out of the net they have hidden for me,
    for you are my refuge.

 

We are very grateful for your faithful prayers, for your words of encouragement, for your expressions of love. Please help us pray for a clear MRI on July 19th and for guidance for our doctors as they look for the best way to help Jonathan’s mobility.  Pray that God will restore Jonathan’s body and that he will remain strong in Him despite the challenges he is facing. And pray that our upcoming trips will provide rest and time well spent with our families.

And above all these put on love, which binds everything together in perfect harmony. And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. 

 

UPDATE ON BECCA: Our friend, Becca Davis began her chemo treatment last Friday. This week has been rough, but she is coming out of the worst part and hopefully she will have a few days of relief before she receives the next treatment. Please, help us pray that God will use these drugs to eliminate her cancer completely.

 

Summer

What a busy Spring this has been! School and children’s activities kept our calendars full and our house without much progress after our move. But we did it all as a family and we enjoyed every game, meet, tournament, and function…

At the beginning of April, Jonathan had an MRI that showed stable images, no more tumor growths, and even some shrinkage in the original site. The plan was to continue one of the chemo medications every other week until the new scan on June 5th. We rejoiced greatly in this news and focused our attention on stimulating and strengthening Jonathan’s arm and leg through physical and occupational therapy. The chemo treatments have gone very well with little side effects. By Easter, Jonathan had regained a significant amount of strength and control. He was able to lift up his arm above his head, walk with more stability, and even carry a light load in his hand.

God has been very gracious. We are extremely grateful for every small improvement, and the health care that we have access to.

But, this week has been a rough. Over the past week, we began noticing some regression on Jonathan’s mobility. Today, his arm and leg felt very weak, so we decided to contact his doctor. The response came back fast. They put him back on steroids and they have bumped his June 5th MRI to May 31st. We are very thankful that we have this kind of care. We see this as God’s good provision. But it is hard not to be anxious about what could be causing this set back.  Please pray for us as we wait for the MRI on Wednesday. Pray that Jonathan’s mobility will improve and that we will be able to continue working on his therapies.

For who is God, but the Lord?
    And who is a rock, except our God?
the God who equipped me with strength
    and made my way blameless.

This week has not only be rough for us. These days have been especially difficult for one of our closest friends, Becca Davis and her family. The Davis family, the Souders family and ourselves, have been in a small group since 2009.  Together we have walked through the difficult journey of the Davises’ son’s brain tumor,  Jonathan’s brain tumor, and now the recent diagnosis of Becca breast cancer. Please, help us pray for our friends. Pray that Becca’s treatment will be very effective in eradicating completely this cancer. Pray for her family as they walk with her during this season, and pray for us as we seek to serve our friends with the same love they have served us.

Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our affliction, so that we may be able to comfort those who are in any affliction, with the comfort with which we ourselves are comforted by God. For as we share abundantly in Christ’s sufferings, so through Christ we share abundantly in comfort too.

A Short, Good Month.

Praise is due to YOU, O God, in Zion, and to YOU shall vows be performed. O YOU who hear prayer, to YOU shall all flesh come.                                                                              

Psalm 65:1-2                                       


Thank you for your faithful prayers. February has come and gone. It has been busy. It has also been good.

The afternoon of January 31, we signed more papers than we will probably sign in three years put together. We closed on both, our old and our new houses, and two days later we moved. Through the whole process of staging, listing, packing, and moving, God was abundantly gracious and the help that many of you provided to us was invaluable. The transition to our new home has been smooth allowing Jonathan much better accessibility for every day life activities.

At the beginning of February Jonathan had an MRI following the completion of the radiation plus chemotherapies treatment. Our conversation with his neuro-oncologist over the images was very encouraging. The first piece of good news was that there is no more tumor growth at this point.  This is significant, because of the sudden and aggressive tumor behavior we saw back in November. In addition to this, the images also showed a reduction of the tumor, which indicates effectiveness of the treatment. The doctor felt that the purpose of the treatment was attained and his recommendation was to continue one of the chemotherapies (the infusion one) every other week and repeat scans at the beginning of April. The Lord has granted Jonathan to tolerate the chemo very well. His discomforts have been minimal, he has continued to work and to participate in as many family activities as possible.

Over the past two weeks we have had an added blessing! Jonathan has been recovering part of his strength and even sensitivity on the left side his body. Before we began to see improvement, his arm and leg were extremely weaken. Especially his arm, which Jonathan could no move almost at all. It is easy to take for granted the many things that involve both hands and how many adjustments are necessary when one of them refuses to cooperate. But even under these circumstances, Jonathan has been a good leader to our family. He has made the very hard choice to push through, to work tenaciously, and even to joke about this (I’ll spank you with my left hand!, he keeps threatening the kids). This has allowed our children to be part of this in  a special way and has given us all the freedom to celebrate together even the smallest of progress. We do dances and jumps every time daddy is able to do a new move that he wasn’t able to do the day before. Praise God for his beautiful gifts and undeserving grace.

Last time we asked you to please pray for:

Our house transition…

Jonathan’s left side strength…

Effectiveness of treatment…

God has graciously heard our prayers and has abundantly granted more that we knew to ask.  We keep praying for more improvement of Jonathan’s left side. For complete restoration of his health. We keep asking God that He will help us trust Him every step of the way and be grateful for what He chooses to give. I recently came across a quote by  Elizabeth Elliot that even though hard, I hope to be true for all of us who follow Christ.

“The love of God did not protect His own Son. The cross was the proof of His love(…). He will not necessarily protect us – not from anything it takes to make us like His Son. 

“Rejoice in the Lord always”

Over the last few weeks, we have continued to see God’s hand powerfully working around us. Although we have not seen major side effects from the treatment, Jonathan has experienced some of the side effects the go along with taking steroids that reduce inflammation in the brain. One of those side effects is insomnia.

4:40 am. At first, Jonathan was not getting much sleep at all, but then he began to wake around 4:40 am no matter what time he went to sleep. God used this to remind him of 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”. Our joy in the Lord is not based on our circumstances, but comes from knowing the One who is in control of our lives and finding our delight in Him. We have needed this reminder everyday. As a result, these early morning hours have been a fruitful opportunity instead of an annoyance. 

 

Jonathan had his third (out of four) chemo infusion this past Wednesday. Other than some tiredness, he has not experienced other discomforts and he has been able to maintain a regular rhythm at work and life in general. We feel very grateful that the Lord has allowed his body to tolerate this treatment so well and know that God has heard your prayers on his behalf.

The lack of strength and control on the left side of his body has continued to be a significant issue. Jonathan is largely unable to use his left arm and leg, making simple everyday tasks (like walking or getting dressed) a challenge. In light of this and other realities that may lay ahead for us, we have taken a proactive approach to plan ahead and make some difficult decisions now that set us up well for the future, while praying and trusting that God knows our tomorrow.

The most urgent of these issues has been to get into a house that resolves the accessibility challenges of our present tri-level home.  Jonathan has actually fallen on the stairs and there is no way to get into our house, get to the bedroom and get to the kitchen without using the stairs.   So we decided to find a house that resolved these complexities.

We have seen God provide in amazing ways.  We listed our house, put a contract on another house, and accepted a contract on our house, all over the Christmas holidays!  We will close on both houses at the end of the month and move February 1.  The house we are moving to will resolve the accessibility issues and set us up well for the future.  So many people have come together to help us prepare for this. From yard work and staging, to our amazing realtor, who has guided us every step of the process.

After the move, our big next step is Jonathan’s MRI on February 2nd and a followup with our neuro-oncologist on February 8th. This should tell us whether the treatment has been effective against the tumor and lay out what is next for us.

Please, pray for our house transition…

Jonathan’s left side strength…

Effectiveness of treatment…

Patience waiting for results…