Because He Lives

Because He lives
I can face tomorrow
Because He lives
All fear is gone
Because I know
He holds the future
And life is worth the living
Just because He lives

God’s pursuit of our hearts begins way before we know to recognize it. Years ago, I attended a funeral of a family saying good-bye to their young child. I vividly remember the impact it had on my life hearing them sing in the middle of their sadness. I could not understand it. I didn’t know Christ, and I had never seen anything like that before.

I didn’t know it then, but God was pursuing me and He used that experience to impress my heart.

A few hours ago, we gathered around Jonathan’s bed and we began singing. His breathing was shallow and labored.

And then one day
I’ll cross the river
I’ll fight life’s final war with pain
And then as death
Gives way to victory
I’ll see the lights
Of glory and
I’ll know He lives

Jonathan closed his eyes in this world and opened them to His heavenly Father as his family and closest friends sang the very words God had used years ago to begin drawing me to Himself. In God’s economy, nothing is wasted. He sees what we can’t see. He knows what we don’t know. He can be trusted.

Thank you for every prayer, every word, every demonstration of love and support. Jonathan left entrusting his family to His Heavenly Father, knowing we will not be alone. We love you. We are grateful. We are still in the journey.

In the blink of an eye we will be together again.

One Day at a Time

God’s provision looks different depending on the circumstances, but it is always fitting. And it is always timely.

Last night, I stayed up late writing an update about the last three weeks. I wanted to share about our good days in the middle of this hard journey.  I wanted (and still want) for everybody to be encouraged as we have been encouraged by the good gifts that the Lord has given to us these days. I wrote it. I didn’t post it. God knew what today would bring and He was providing for what I would need today.

This morning was very rough, but before you read about it, be encouraged by the ways God has orchestrated everything.

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God’s mercies are new every morning.  I’ll say it again. God’s mercies are TRULY new every morning.

A lot has happened in almost three weeks since the last post. We celebrated Jonathan’s 43rd birthday on August 13th. His whole family was here and it felt like a glorious day.  Jonathan pushed himself as much as he could and ate better than he had in weeks -meaning three or four spoonfuls of food, plus a bite of cake, as opposed to only one or two spoonfuls per meal. Next day, he felt so bad that he made the decision not to eat solid food again.  It was very difficult. In my mind, food is nutrition and nutrition sustains our physical bodies. We would rely only on protein shakes. By August 18th he was feeling very weak averaging only one or two shakes a day. That day, a friend let us borrow a juicer and Jonathan drank about half a cup. Over the next days, we had some good and other not so good days, but his general interaction began to improve, his nausea and acid reflux also got better and his juice intake slowly increased. By August 24th, normal body functions were still a constant torture to Jonathan’s body.  At that point, we had a hard conversation when he clearly expressed feeling like he was having more days, but not better days. He decided not to have shakes anymore. He would only do juice. Perhaps the juice would be better tolerated by his stomach.  This was a last try. He was very tired.

But God’s grace is vast beyond compare.

Not only God gives us strength and sustenance each day, but He also showers us with unexpected, beautiful, undeserved gifts. On Saturday the 26th, our small group and our soccer friends teamed up to allow Jonathan the opportunity to watch our youngest play. It was wonderful. Jonathan felt well enough to make it to the soccer field. The joy of being surrounded by the kids he has couched for years by far outweighed the effort it took to be there. The 28th Jonathan had the opportunity to visit with several of his closest friends who came from different parts of the country, and even from overseas, only to chat with him for a couple of hours. It was an irreproducible moment of honesty and true everlasting brotherly love. This past weekend, we spent Labor Day with Jonathan’s parents and siblings as well as my mom. Jonathan talked, laughed, cried, played. Despite his limitations, he enjoyed his family.  During these days,  Jonathan has continued drinking natural juices as his only source of nutrition. The benefit his body has received is obvious and simply incredible. Jonathan’s GI track is working a lot better. His discomforts have decreased, he is awake most of the day, and his interaction has improved significantly. We can only see God’s merciful hand in all of these gifts. We keep asking for a miraculous and complete healing for Jonathan. But God’s love for us is so big that as we wait for Him to show the way He will provide for that complete healing, whether on this world or in heaven, He is granting us many smaller yet incredible miracles. He is granting us better days, and not only more days. One day at a time is a gift to enjoy and to celebrate.

Recently, I have thought about and better understood the words that first our doctor, and later nurses and social workers kept repeating when they explained hospice care to us: our goal is to take one day at a time. That goal is very real to us right now. It is not just what we say when we feel tired after a long day of work, or when we are overwhelmed trying to finalize a project, or when our children get the best of our otherwise normal personality.  In those moments, the phrase is valid, don’t get me wrong. But under hospice care, that phrase is different because it is totally deprived of the possibility of switching gears. There is no further plan, there is no break. One day at a time has a very literal meaning these days. It is not easy, but surprisingly, it is helping us appreciate God’s new mercies in a deeper way every morning. We get our manna for today. There are no left overs. But fresh manna for tomorrow is guaranteed.

We celebrate these good gifts knowing that you celebrate with us. Thank you for your relentless prayers and constant demonstrations of love.

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And God provided manna for today.

Around 3:20am,  Jonathan woke up saying he needed help and immediately began to gasp for air.  The episode was unexpected, long, scary. By the time the hospice nurse arrived, his breathing was still very labored, but not as distressed. The nurse put him on oxygen and gave him morphine and Jonathan was able to relax.

Jonathan is more stable right now, but this episode has initiated a process in which closing his physical eyes here to open them in the presence of His Savior is the imminent reality. A reality that is hours or maybe days away rather than weeks. It hurts deeply to face it, but God ministers to our hearts in a special way. He reminds us that HE will remain our anchor no matter what.

Our day has been uncertain, but we have not been alone. Our family and close friends have been with us. We feel loved, surrounded, cared for. But we hurt, our kids hurt, our families hurt. Continue to pray with us as the Spirit leads. He receives the glory.

Divine Paradox

It is hard to describe the last few days, not only because they have been difficult, but mainly because they have been unexpected. Honestly, when Jonathan began having motor challenges due to tumor growth back in December, I knew that some sort of physical disability could be a reality for our family. In my mind, it was clear that having a permanent weak arm, or using a brace, or a cane could be our “new normal.”  As we processed this reality, God provided a way for us to sell our tri-level house and to move into a new home where Jonathan would have all he needed in the main level.  As his left side weakness worsened towards the end of May, a wheelchair began to replace the cane in my thoughts. As frightening as this idea was, I felt we would be fine. I would probably need to stop working in order to make my husband’s work a priority. I almost envisioned myself helping him getting ready every day, driving him to the office, and typing for him. I imagined life would be hard, but we would be fine.

In July,  Jonathan got very sick. He got weaker that I had ever seen him. As we were trying to get him better from (what we thought only was) a GI hurdle, we discovered that the tumor was moving into his brain stem, and what had once been just a scary thought became real. We needed more treatment; more chemo and more radiation. I would not return to work. In fact, I would need to become a full time helper to Jonathan since it was now evident that his left side would not go back to normal. Rather, it would only improve some, if treatments worked. Processing all of this was hard, but Jonathan and I have always been a team and I could picture us teaming up to make things happen. We would need to rearrange our activities and priorities, but we could do it; getting him dressed in the morning, driving him to work, going to PT and OT regularly, typing for him. I knew it would be hard, but I was ready. We had a plan. It always feels good to have a plan. First, we needed to get his GI system back on track, then complete radiation as he began oral chemo. Six weeks later, second oral chemo… hopefully all towards a successful arrest of the tumor. We would be fine.

Then, last week happened. Hospice was called. As we initiated the process, my mind quickly built new expectations. We would stop treatments, Jonathan’s body, now free of toxic treatments, would regain some strength, and we would enjoy sweet family times for many days. That would be fine.

We have now been in hospice care for a week and my expectations have been shattered as quickly as they were built. Hospice workers are a blessing. They are sensitive people who strive to support the patient and his family in every possible way. But hospice is impossibly difficult. It means coming face to face with an undesired reality and with decisions one wishes never having to make. Jonathan’s health continues to deteriorate and there have been curveballs that I never envisioned. Things are not fine, but God’s promises remain.

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.

During this sad, hard week, I have struggled with what has felt like contradictory concepts in my heart. For days, I have felt that one side of me is begging for a miracle from the Lord; knowing that it is medically impossible for Jonathan to recover, yet believing that God designed Jonathan’s body and He is in absolute control over each one of his cells. He rules over the laws of the natural world. He commands the universe. The other side of me is willing to accept that if God choses for Jonathan’s body not to recover in this world but to receive ultimate healing in His presence, He can be trusted. His plan for our family is still good and perfect. He will carry Joanna, Daniel, David and me through. He will not forsake us.

These two seem impossible to reconcile. They seem opposite. But the Bible teaches both. The Lord delights in His children’s prayers. By God’s infinite grace, we have access to the throne of grace to find mercy and help in time of need. Because of Jesus’ blood, we have the freedom to let our requests known to God by prayer and supplication. I can keep begging for a miracle. God is not offended. He sees my heart. He hurts with me. Illness is not part of His original plan. And in the same breath I can confidently say “not as I will, but as you will.” Jesus himself taught us that. He begged for a different outcome, yet He modeled for us what it looks like to have complete trust in the Father’s perfect plan by willingly saying “your will be done.”

We don’t say “your will be done” because we lack faith in God’s power over His creation. And we don’t ask the father for a miraculous intervention because we don’t trust that He may have a better plan for us. Both, asking and submitting are acts of faith and they can coexist. It is a divine paradox that ultimately reflects God’s character; He is powerful and He is sufficient.

These are long days. They are hard. We keep praying with open hands to the God that knows all things and that loves us relentlessly. We pray that His name will be glorified.

Let us consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 

He is faithful. He can be trusted.

The Anchor of Our Souls

This is not a post I want to write.

Wednesday afternoon, I had a very hard phone conversation with our neuro-oncologist. I asked him to be very honest on what we were facing medically given Jonathan’s continuous and rapid decline despite completing the radiation treatment. He explained to me that he had been hopeful that radiation would bring improvement, but that by now, it was clear to him that Jonathan’s symptoms were speaking of disease progression. He said that we had reached a point in which treatments were hurting Jonathan more than helping him -we all know that both, radiation and chemotherapy are toxic and harmful not only to cancerous cells but to healthy ones as well. He gently explained that it was time to switch our focus from fighting cancer to having the best quality of life possible and spending time as family… That is not what I wanted to hear. I wanted to hear that there is a new experimental treatment, or that there are some medicines that he had in his back pocket, or that perhaps these symptoms were not tumor related and could be resolved soon; that we could resume our lives of living with cancer and having clear quarterly MRI’s for years to come.

But he did not.

We decided to schedule an appointment for this morning along with an MRI before we made final decisions. The MRI this morning revealed that, as the doctor anticipated, there are new areas of tumor growth that are on an opposite side of where we were currently treating. That means that while we were targeting one area, the disease was spreading to another place. This explains the symptoms that Jonathan has been recently experiencing and why the current treatments didn’t seem to be working effectively.  Medically speaking there is no reason to keep putting Jonathan under such aggressive treatments. So our doctor helped us made the decision to call palliative care.

Our afternoon was long and emotional. We have always been intentional to communicate with our children as openly and clearly as possible. This time, the news was hard to convey, and their many tears made evident that they understood well the implications of this shift. We hugged and cried quietly together for a long time. Jonathan keeps shepherding our family well and in the midst of his exhaustion, found energy to encourage his children to trust in God’s goodness even in the middle of this.

The pain is so deep and the fears are very real. But God’s character doesn’t change. His love for us doesn’t change. Jonathan and I have always loved the Biblical image of the anchor. Hebrews 6 says that the hope we have in Christ is an anchor of our souls. We need an anchor. The circumstances around us feel like a storm tossing us back and forward; there are many uncertainties, we face realities that are physically and emotionally challenging. We need an anchor that keeps us from being swept by the waves. And we have that anchor in the hope we have in Christ. While life is uncertain, our salvation is certain. While our reality is challenging, our future hope is glorious.

We go to sleep with heavy hearts. Hearts that struggle to make sense of our reality. Hearts that keep begging our Almighty God to intervene in a miraculous way and to receive the glory for what only He can do. And as we beg, we also trust His perfect ways. We know that He goes before us and behind us, and that He will never forsake us.

Praise the Lord, all nations! Extol Him, all peoples! For great is his steadfast love toward us, and at the faithfulness of the Lord endures forever. Praise the Lord! ~Psalm 117

 

 

 

 

God’s Provision

I know that I use the word “grateful” very frequently. But I cannot find a better word to express what God’s provision produces in our hearts. Even when we find ourselves in a drought, His fountain never runs dry.

I am grateful for so much. I am grateful for excellent medical care. I am grateful for family visiting and helping around. I am grateful for an incredible community that gives generously. And I am especially grateful for constant prayers and words of encouragement. Occasionally, people ask if they are being intrusive or if we get annoyed by their offering help or encouragement. No. We do not ever get tired. We need the help, the words, the prayers. God uses each of them in powerful ways.

We keep praying for healing. God heals in different ways and we are learning how healing is coming to us.

The past few days have been hard physically, emotionally, and spiritually. Throughout all his past treatments, Jonathan’s body remained strong, but the cumulative effects of these treatments have made him more vulnerable, and the recent chain reaction of sorts that he is going through has been medically difficult to tackle.  Last week Jonathan began to take a medicine that is typically used to treat stomach ulcers. We think this is helping heal his stomach.  On Thursday he was able to eat 1/4 cup of apple sauce. Over the weekend we slowly increased the number of times and the amount of food he ate and he is finally eating three very small portions of food a day. No vomiting! We count that as great progress.

Overall, he still feels uncomfortable and eating takes a big effort. A common short-time side effect of radiation is fatigue; Jonathan’s is severe. A few minutes of interaction are enough to drain his energy. He is choosing to whisper since speaking takes too much out of him, and he sleeps most of the time. It pains me deeply to see my husband feeling this sick. It is frustrating not to be able to do more in order to help. But my heart grows with admiration at Jonathan’s humble endurance of his current condition and his determination to do what it takes to get better. He has not complained once.

Today, he completed his radiation treatment. During these past ten days, he was given IV fluids after each beaming session. Starting tomorrow, we have to make sure he stays hydrated at home. Please, continue to pray that his stomach will heal completely and that  we will soon be able to focus on tumor treatment and not only on the effects of treatment. We will be in touch with his neuro-oncologist this week to determine our options ahead.

The Lord is my portion, therefore I will wait for Him.

 

August 2nd

“Behold, I, I myself will search for my sheep and will seek them out… I will seek the lost, I will bring back the strayed, and I will bind up the injured, and I will strengthen the weak.” ~Isaiah 34:11,16.

God knows our every need. He provides what we need to continue walking every day. Only He gives us the strength to trust Him, even when we cannot see what the next day will bring. This is the kind of assurance we have, one that tells us that He will take care of His sheep. We keep walking and we keep asking our good Shepherd for guidance and ultimately healing.

This morning Jonathan completed 6, out of 10 radiations. Radiation is going well, but Jonathan’s GI discomfort has not improved much since we left the hospital. He has not been able to keep food down, except for protein shakes. We met with his doctors today and both agree that even the location of the tumor could be aggravating the symptoms that Jonathan is having. Cancer patients, in general are more susceptible to get infections, and the use of steroids makes them prone to develop yeast and to get sensitive stomachs. They decided to add a stronger medication that will provide better coating for his stomach and also to treat for yeast. They will also give Jonathan an IV every day after his radiation to keep him hydrated.

For the time being, until we finish radiation and Jonathan stomach gets stabilized, we will continue to wait to take oral chemotherapy. His doctor reminded us that even though very important, adding it at this moment could hurt him more than help him. We are very glad that despite this GI issues, Jonathan is able to handle both radiation and IV chemo. And we are grateful for the way his doctors are personally involved in his care carefully ruling out problems and treating as much as they can at once without putting him at risk.

Please, know that your concern and love keep us encouraged. There are moments that feel dark, but we know our Shepherd is watching over us and his hand won’t let go of ours. We keep hoping because He is the one that gives us the very air we breath, the one who created us, knows us, and can restores every cell in our bodies.

Please, pray that the medications just added today will be effective in healing Jonathan’s stomach.

Pray that Jonathan’s stomach will soon be ready to keep food again so that his body will get the nourishment he needs to continue his treatment.

Pray that we won’t get discouraged and that will abide in His Word every day.

To the One who can give us strength when we are weak, to Him be the glory!

 

Specific prayer

Patience is not an easy or natural state for many of us. But patience is a part of the fruit of the Spirit and He gives it to us when we ask for it.  I need patience.

Jonathan is still not eating or drinking as well as he should be, although we have seen improvement.  It is hard not to think that he needs to start a new drug soon, a drug that will make him ill before it gets him better on top of the way he already feels.

His next radiation is tomorrow morning and then we need to decide if he will take his oral chemo or not. Please, help us pray specifically.

Pray that his GI track will get significantly better overnight.

Pray that we will have wisdom to make the right decisions tomorrow.

Pray that we will be patient.  The Lord has not left us before. He will not leave us now.