Thomas’ sailing friend sent us pictures of his sailing adventure in Hawaii. Finally, some real photos to share here. I love seeing him so full of life and to me, sailing is a metaphor for his life right now – he is ready for new vistas and unexplored territory. His next CT scan is in one week and we look forward to good news and a deeper breath of relief.
Looking forward with anticipation is almost as much fun as the arrival of the much-anticipated event. In less than a week, we will all – all eight of us – be headed to Hawaii for Thomas’ Make-A-Wish trip. I will never forget the day in the hospital when the nurse who was caring for Thomas that day, in an effort to cheer him up, told him about Make-A-Wish. Thomas had just had a traumatic experience in the ER where he had received the incorrect feeding tube, a huge feeding tube down his nose. He had lost weight, he wasn’t eating and we were in the hospital again for the third time. It was a low, low time for him and he was very discouraged. When he heard the stories of other children and their wishes, I could see the wheels turning in his mind and it immediately gave him something tangible to hope for in the midst of his discouragement. I know this is why the foundation exists and their generosity and good will to children facing life-threatening illnesses is beautiful. We feel incredibly blessed to receive this amazing time together. What a gift!
In the meantime we have all avoided the hospital and doctors. Yes! We are in full swing with school and activities. Titus is doing his best to destroy my house on a daily basis; I appreciate his contribution to my work ethic. The girls’ sewing adventures yielded fantastic Halloween costumes and Mark and I scored ours in the operating room. I am not a big fan of Halloween but we joined in the dressing-up this year because we thought the costumes a fitting symbol of our year. And then came All Saints’ Day, the day Halloween was intended preparation for. I love this celebration in the church year, a day to remember the saints who have traveled these very same paths before, who completed the race with grace and perseverance. I made my kids sing every verse to For All The Saints and we talked about the reality of the unseen, that what is unseen is actually more real, more truly in essence itself than what our eyes perceive. We read Hebrews 11 and then these verses…
Therefore, since we are surrounded by so great a cloud of witnesses, let us also lay aside every weight, and sin which clings so closely, and let us run with endurance the race that is set before us, looking to Jesus, the founder and perfecter of our faith, who for the joy that was set before him endured the cross, despising the shame, and is seated at the right hand of the throne of God. (Hebrews 12:1-3 ESV)
Thomas commented, “Oh, so it is like a relay race. They handed us the baton and now we are running.”
I had never thought of it in that way; I had thought of the great cloud cheering us on, but yes, it is a relay race and we are holding the baton, seeking to complete our leg of the journey. As the song says, “O blest communion, fellowship divine. We feebly struggle, they in glory shine. Yet all are one in Thee for all are Thine. Alleluia!” These days of every-day life, no health crises – just the normal friction in relationships, working to understand each other, seeking to lay aside petty encumbrances are the miles of our race. I think these miles of our race in between the crises are actually the hardest to run with perseverance. When tragedy and adversity come, God gives equal grace and mercy to sustain and bring life. I know the same mercy is available to me now in the quiet. It is only my lack of soul-poverty that prevents me from receiving it. It is my prayer that in the quiet days my soul would remain open to the love of God, that I would seek with anticipation His presence and ultimately, the completion of the race. Oh, the joy when finally we see with certainty the true reality for which our souls have longed.
Our quiet days…
I am relieved and Mark is resting. A good combination, I think. His procedure went well today and he is feeling much better tonight than he felt the last time around. The doctor removed the stent and said Mark’s biliary system looked good as compared to previous procedures. It doesn’t mean his disease is less advanced just that everything is relatively open right now. The stent appeared to be occluded so that could have contributed to all of his itching; the stent wasn’t actually improving drainage from the liver. But it did appear to widen the biliary ducts so in that regard, maybe the last two months were helpful. We keep praying his liver limps along for a while longer. Compared to others with his disease, he has gone a long time with his health being quite good, which we attribute to God’s grace and proactive care for his body. But he has had this disease for at least sixteen years and generally people need a transplant within ten years of diagnosis. While we are grateful liver transplants are possible, it is certainly not an easy road to travel and we are hoping it is avoided for at least a few more years.
Sitting in the endoscopy prep room with IVs everywhere and monitors beeping and nurses walking in and out, I shook my head at our life. I really, really don’t like hospitals at all. Somehow the medical gene skipped both Mark and me; our families are filled with medically inclined people. There is not one bone in my body that wishes I had entered medicine as a profession. I have to breathe deeply every time I enter the hospital and wonder that anyone would want to devote their life to working in a hospital. I am incredibly grateful to those, like my sister, who do but it has never appealed to me. How odd it is to look back on my life and realize much of my life has revolved around medicine and hospitals. I have clearly seen God’s grace and redemption in all of it but as I sat and looked at Mark attached to all of the monitors, I felt just tired and weary of this path given to me. I am learning to be a nurse whether I desired to be one or not. It is in these moments of reflection that I realize the very small measure of control I posses over my life and the path God has given me. I may be able to control the outfit I wear but beyond that, not much else. And then the thinking of the future starts and I feel there is no way to keep going. But again, again, and again I stop and remember I only have to get through today.
Today we are thankful for our quiet home, our brave and loyal friends who watched all six children today, a good procedure, an itch-less Mark, Titus walking, Thomas’ full head of hair, salted caramel ice cream, soup made by same loyal friends (as if watching the kids weren’t enough), beautiful fall weather, cute skirt, more quiet and more quiet. Thank you for praying for Mark.
The mountains exuded the beauty of fall. The aspens varied in color from deep mustardy gold to magenta and fluttered in the wind as only aspens can do. The sun warmed us but the cool, crisp fall air brought just a hint of winter coming. Drinking apple cider and playing games around the table filled our evenings and Eva’s tenth birthday was appropriately celebrated. Being together with no throwing-up, no feeding tube, no medications, was such a relief. It felt odd in its simplicity. Ah, yes, this is what life used to be like. This is normal. This is how families spend time together.
In my last post, a comment was left about the feeling of leaning against the wind and not knowing what to do once the wind has left. Yes, this is a picture of my feelings. The thing I have been pressing against is no longer there. The absence of the beating wind is almost deafening in its silence. How is it possible to move from so much intensity to nothing? Well, I am finding out. The blowing wind has quieted and now I am able to stand without pushing back. I might fall down, stumble, as I find the way to walk again in normal life. Once again, we are all experiencing a paradigm shift. I think everyone in this house is a little out-of-sorts, trying to re-establish some sort of balance and rhythm. As with anything traumatic and exhausting, the effects are sometimes delayed.
So, I am trying to find my ‘normal’ shoes to pull out of the closet. I think they will help me find my footing in this return to what was once all I knew.
Curled up in bed, I am finally able to process the many emotions of today: nervousness, relief, joy, disappointment, tempered optimism, joy some more and finally, celebration. After a little time to let the news percolate through my mind and heart I think I can celebrate. Having our doctor come back with news of a small spot was really difficult. We were so relieved to know there was NOTHING in his lungs. This had been my prayer, clear and unambiguous findings, with NO spots in his lungs. I was dreading this very scenario, just a little bit left behind. Thomas was so pleased hearing the results and didn’t mind even when Dr. Greffe said there was still a spot. I wanted to start wailing but I held it together and asked my questions and finally decided I had to trust the doctor on this one. I held our nurse’s hand and squeezed back the tears as she reassured me.
Going out to dinner with our kids, sitting round the table toasting Thomas and his good health, helped the reality to sink in. For whatever the future holds right now Thomas is off therapy. Right now he is able to start living life without drugs and needle pokes and vomit. Right now he can start to run and wrestle and do the things fourteen year old boys like to do. I am thankful. On the way to the hospital we all prayed together. As he prayed, Thomas said, “Thank you Lord for already healing me, for changing my life through this.” If my boy can say this, than can I say anythings less? Thank you, Lord, for healing Thomas. Lord, I believe. Help my unbelief.
Finally, I promised Thomas I would tell an embarrassing story on myself. Thomas absolutely detests the CT contrast he has to drink before the scan. It has been a source of much gagging and near throwing up on previous CTs. As he was drinking it and complaining he asked if I had ever tasted it. “This is so disgusting! Do you even know what it tastes like?” I mumbled in the affirmative that I did know what it tasted like. A little while later he asked when I had had a CT and I had to confess that my previous assertion on knowing the taste was in fact a lie. He started laughing and shouting, “You have to put this on the blog! You have to put this on the blog! What? You never tasted it and you said you did??” His moaning and whining was enough to drive a saint to lying just to get him to drink it. Well, at least it drove me to it! There! Now I confessed.
Tomorrow we start a new chapter in our lives – life off therapy. Hopefully we will arrive back at a routine now that we are free of hospital visits for a while. I am praying we never lose the lessons we have learned. I will be holding on to valuing the present, trust, hope, beauty, family and friends and always the ever-present reality of God’s unfailing and deep love. He has sustained us through this trial, brought us closer to Himself, lavished us with love. To God be all the glory, both now and forever. Amen.
After a day of classes, Thomas and Sophia joined their friends and fellow musicians at an orchestra camp. I stocked up on nut butters, trail mixes, Kind bars, pretzels and much more to keep Thomas fed and caloried-up. His supplies are full and his mission is clear. EAT FOOD! Sophia eyed his stack with envy and being a good big brother, he will share of course. They left this evening and won’t be back until Sunday afternoon. Another milestone reached. He is healthy enough to venture from the safe confines of home and Mark and I are both grateful. It is nice to see his smiling face minus the feeding tube. What will we do with only four kids at home? It is kind of cramping our style because our built-in babysitting is gone. Bummer. No leaving the kids home and going out on the town this weekend 🙂
Mark’s C-diff test came back negative so we know it is just his ulcerative colitis acting up again. The stent is coming out but not for a few weeks. He is going to try to tough it out that long. Men. The prayers for his health and functioning are ongoing and we continue to ask for relief and sustenance.
A lovely friend sent me a necklace with ‘Hope’ inscribed on it. I wear it and touch it throughout the day and it steadies me in the midst of ‘scanxiety’ as my friend, Sam, calls it. Hope in the Lord, hope in His goodness, hope in His faithfulness no matter what. We are holding on here.
Here I sit, all alone. Unusual to say the least and something of a treat. Orchestra called the big kids away and Mercedes and Theo skipped, figuratively, to Grandma’s house for a sleep-over. Titus is sleeping soundly and Mark is at a meeting. So, the house is quiet with the humming of the dishwasher and the scent of rain drifting in the windows. Fall is knocking on the door of summer and I think I may wear boots and a sweater tomorrow. Change. Again. Always more change.
Today, Thomas’s appointment was scheduled for next Wednesday. It will be a long day of tests and meetings with doctors. When I think about it my stomach does a somersault reminiscent of my feelings before a big piano performance. The feeling occurred throughout the day and I am sure will continue as the day draws nearer. The waiting is almost the hardest part. Maybe not. Maybe the knowing is the hardest part. When you don’t know life can continue the way it is. I have been thinking ‘ignorance is bliss’. I hated being told I didn’t understand something or I should wait until I was older when I was a child. I stomped my foot and demanded to know. Now I would rather not. All of these thoughts are predicated on the possibility of a bad outcome. If the outcome is good, cancer-free, than I do want to know. It is just that we don’t KNOW. What to do? Hope and trust. That’s where I am at as I sit here alone. Praying for the grace to trust.
Nearer, still nearer, close to Thy heart
Draw me, my Savior so precious Thou art!
Fold me, oh, fold me close to Thy breast
Shelter me safe in that Haven of Rest
Shelter me safe in that Haven of Rest
Hope does not mean that we will avoid or be able to ignore suffering, of course. Indeed, hope born of faith becomes matured and purified through difficulty. The surprise we experience in hope, then, is not that, unexpectedly, things turn out better than expected. For even when they do not we can still live with a keen hope. The basis of our hope has to do with the One who is stronger than life and suffering. Faith opens us up to God’s sustaining, healing presence. A person in difficulty can trust because of a belief that something else is possible. To trust is to allow for hope.
I posted this on the day we found out Thomas was not a rapid responder and would need more intensive chemotherapy. I return to it again as we wait for the final word on Thomas’ cancer. Treatment completion is a double-edged sword; on the one hand there is tremendous relief to know Thomas will no longer suffer the effects of chemotherapy. On the other hand now there is nothing else to do. The chemotherapy can no longer make the metastases disappear. It has done its work and we pray its work has been effective and complete. And, now we wait. And we hope, and turn fear away as it knocks at the soul’s door.
I have been thinking about the twins Worry and Fear. Ever present in my life as a child, they filled my young mind with consuming thoughts of Soviet invasions killing my family, AIDS infecting us all, my father’s failing health and impending death, and other wild thoughts far too dark for a child. My mom would pray for me and I would pray and they would leave for a time. What a strange child I was! Maybe it was my father’s terminal illness that made the future frightening and ominous. My own children don’t seem to be troubled with such dark thoughts. I can feel that consuming fear even now, the inability to escape the feelings of panic, the enveloping sense of dread. My father did die and I feared it. Then I feared my mother remarrying. Then I feared ever experiencing chronic illness again. I knew what that looked like, I had experienced it, and did not ever want to deal with it again. If there was one thing I dreaded, it was an on-going illness for someone I loved.
Life continued and a certain point kept being made with all these fears. They were never realized in the way my mind conjured them up. My father died and it wasn’t anything like I had imagined it to be. The loss was deep and significant but there was also relief and joy. It felt like the sun had come out after a long absence. Death didn’t hang over our house anymore. Joy returned and with it new experiences. My mother didn’t remarry. But I did marry someone with a chronic illness.
When we married, we knew Mark had ulcerative cholitis. I could handle that. We might have to change our diet and he might need surgery but that I could handle. That was fine. That was manageable. When he was constantly denied for life insurance and then finally diagnosed with Primary Sclerosing Cholangitis, I did feel a deep betrayal. This was the one thing I said no to. This was the one thing I did not want for myself or my children, much less for my husband. I walked through the feelings of betrayal and abandonment by God with a trusted mentor and in them I finally saw mercy, albeit severe, but mercy all the same. It was like viewing a painting from a certain point where everything is distorted and disfigured and then shifting the vantage point and seeing it all in perspective and proportion. Like stepping back from a Monet and seeing the water lilies emerge. In Mark’s illness I saw God’s ultimate love for me to take me out of my prison of fear to see that the Holy Spirit really does deserve more credit. The thing I thought was impossible for me to bear or to survive is the place of deepest healing and grace. It is the place of ultimate safety.
So now I turn and think about all we have been through with Thomas. This experience did not come to us in a void. God’s economy is perfect; experiences are never wasted. In His tenderness He prepared us to face these days of trial. And He has cured me of worry. Not that I don’t want to or don’t think about effects or wonder about recovery. I do. But the encompassing fear of the future is gone. I finally realize that all of my prognostications are most likely wrong. The pain will probably be deeper but so will the joy and it will all be mixed together in an amazing way that only God could do. And pain and grief can be comforted in a way worry and fear never can. Worry and fear isolate and have an element of control in them that keeps me from God and from others. Pain and grief, turned to the Lord are the places of deepest solace and most profound peace. In them, I see the Lord and His goodness. How this is true, I don’t know. I only know it is true. I have known it.
I recently came across this quote in the book The Mountain of Silence. It leapt out of the book to me because it put into words what I have experienced but couldn’t quite pin down. I read it and knew I was not the only one to know God like this.
“Something very paradoxical happens within the hearts of Christians who experience, for one reason or another, deep grief and sorrow,” Father Maximos went on to say. “It is the mystery of God’s Grace. While everything goes wrong at a certain point there is a sudden inner transformation and illumination. That which was experienced as intense grief now becomes the cause of a great amount of Grace, so much so that the bitterness of the grief is annihilated. Grief is transmuted into ineffable joy. I don’t know if this makes any sense to you, but it is true.”
Yes, it is. It doesn’t make any sense but it is true. Hope is not based on outcomes; it is based on the goodness of God. I have tasted His goodness and I know it. No matter the outcome, that never changes. I know Him to be trustworthy so my hope is founded in trust. Not in a blind wishing sort-of-a way but in the abiding knowledge of the Psalms.
“LORD, you have assigned me my portion and my cup; you have made my lot secure. The boundary lines have fallen for me in pleasant places; surely I have a delightful inheritance.” (Psalm 16:5-6).
And, frankly, it can’t start too soon. After a day of feeling on the edge after a mix-up with the Marinol prescription, which never seems to go smoothly, a bad blood draw for Thomas where the phlebotomist poked around in his arm, and with Theo pooping in a very dramatic and disgusting way – lots of laundry and bathing – thank God Mark was home, I am so ready to celebrate tomorrow. All of us are heading down to mark the exciting day. The finish line is in sight, the edge of the desert has been reached, and we can taste normality on our lips like a soothing aperitif, whetting our appetites for life and living.
It is hard to believe he is almost there. In January, September seemed like years and ages from where we were. It felt almost suffocating in its remoteness. And now, we are here, standing on the brink of a return to life without hospital visits, without blood draws, without the need for hyper-vigilance towards germs, without THROW-UP! I looked at Thomas today as we left the grocery store and realized I can’t remember him with hair and eyelashes. Oddly, the eyelashes were the hardest thing for me. I realized that is the look of a cancer patient even more than the bald head. Mark has a bald head but Mark has eyelashes. I can’t wait to see him with eyelashes again. And, when the day arrives and Thomas actually pesters me for food, I will get down on me knees and thank the Lord and never complain about finding more food for a hungry boy.
We plan to bring cupcakes and flowers and lots of notes thanking all of the nurses and doctors who have served Thomas so well. It is strange to think we won’t see these people, people we consider friends, ever again or at least, on the regular basis we have been seeing them. It is a loss in another way. These relationships fired in the oven of intensity, have meant so much to us. Their service and care make the whole journey bearable. I will miss many of them even though I am thankful Thomas no longer needs to be in their care. I know we will see them as we come for check-ups and return visits but the acute phase of his care is over and we are hopeful, never to return. Thomas plans to bring his viola and play for his doctor and our favorite nurse, Flori. Maybe I will record it, if I can remember.
Thank you, thank you to this amazing group of friends and family who have supported us through this time. I still have loads of thank you notes to write to all of you for your generosity and love shown to us. We cannot thank you enough, our words are woefully inadequate and our hearts brim to the top with love for all of you. We could never have climbed this peak without you all holding us up, lifting Thomas up, sustaining all of us. I plan to keep writing through his final scan but then Lifting Up Thomas will be quiet as we return to life without cancer, we pray. Writing and keeping a daily log of our life, my thoughts and Thomas’ progress has kept me sane and helped me to process all the Lord has taught me as we have walked through this. Your comments and prayers have lifted our spirits and let us know we were never alone even in the center of deep pain and grief and THROW-UP. Can’t wait for the throw-up to be done! Thank you for reading and faithfully praying. I can’t thank you all enough for your faithfulness to us. I only hope to be such a support when grief comes to those I love.
I feel almost giddy as I think about tomorrow. What a journey, what a trek, what a tale of God’s faithfulness and goodness! Life is beautiful!
Labor day, always the symbolic end to summer came with lots of sun and time for us to be together. We had our god-daughter over for a sleepover and took her out for a special breakfast and then we headed to the Abbey of Saint Walburga, north of Fort Collins. The Benedictine nuns used to live near Boulder and my childhood memories of their convent and farm still come back to me. We went to the convent on Epiphany right before Thomas was diagnosed and we wanted to go back, here at the end. The Abbess was outside the chapel when we arrived and she gave Thomas holy oil and encouraged Mark and me to bless and anoint him every day. She said we forget how powerful the blessing of the parent is. We sang the psalms with nuns and their quiet, contemplative work, the work of prayer and of silence, blessed me as we prayed. Their rhythm remains a testimony to the Lord, unchanging and rooted in the scriptures. It is a comfort to join in their work and step into the timelessness that is worship.To keep the nook clean, Mark decided to wear it. Titus decided he still wanted it.