There has not been much time lately to write down all that we have been experiencing since being home from Mayo. Finn’s care has dominated much of our time: medicines, IV’s, alternative treatments and supplements, and physically comforting him is how we spend most of our days. As physically draining as this is, it is nothing compared to how mentally and emotionally draining this whole situation is.
It is no easy task to try and put words to the experience of desperately struggling to do all you possibly can to heal your child, all while having to watch and pray that your efforts are successful. Day in and day out we do all we can to keep Finn’s pain under control, treat the ever increasing symptoms of the awful cancer growing within his body, give him the treatments that we pray will kill the cancer, and then wait… and watch… and wait some more. We wait while we see his abdomen grow bigger. We wait while we see his pain become more dynamic and harder to control. We wait while we see his breathing become shallower from the distended abdomen pushing into his chest. We wait while we see his symptoms get worse and his body tire. We do all that is within our power, and then we wait… and pray… desperately crying out to God for a miracle to save our boy.
We continue to treat Finn at home as best we can integratively while waiting and praying that the St. Jude, Mayo and CCTDI labs can come up with a targeted treatment. With each passing day, however, our anxiety grows and our prayers become a mixture of not only that they would find a treatment, but that they would find one in time. Preliminary results from Mayo Clinic have possibly identified a couple of particulars regarding Finn’s current tumors that may give us some drug options to try. We hope within the coming week to have confirmation of this and an identified treatment path moving forward.
From an integrative approach, we continue with the treatments we that show the most promise in hopes of buying time if not a cure. An IV infusion stemming from recent bloodwork results is the primary integrative treatment we are utilizing, while supporting this with many other so called “alternative” supplements and treatments.
Most of the more “conventional” treatments we are using are primarily focused on Finn’s comfort and keeping the pain under control. Pain medications (both IV and through his g-tube), IV nutrition, and medications to stimulate bowel movement make up much of his medicinal intake. In addition, an antibiotic is treating him for a particularly nasty bacterial infection that invaded his epidural, but that we thankfully caught early.
From a pain standpoint, Finn experiences periodic breakthroughs in nerve pain felt mostly around his groin/rectum due to the posterior tumor pushing into his sacral nerve roots. Most of Finn’s pain and discomfort, however, comes from his massively distended abdomen. In addition to backed-up bowels, there are now many tumors growing and taking up space within his abdominal cavity. All of this is pushing out, restricting the bowels, putting pressure on his surgical incision (already a trouble spot from the multiple surgeries and radiation), compressing his stomach (and subsequently pushing out on his g-tube), and pushing up into his chest cavity restricting the space available for his lungs to inflate. Movement of any kind causes much discomfort, and breathing has started to become more shallow and strained.
Finn spends most of his days in bed, either in our room or out in the living room. If he is feeling well, he will want to watch a movie, read a story, or play with play dough. If he is feeling really well we will venture outside for a few minutes in his wagon. If he is not feeling well, which seems to be the case more often, Finn’s day is largely spent with us sitting on the floor next to his bed, physically comforting him with our hugs, our touch, and our presence.
The Mental/Emotional Strain
As a parent it is one of the most helpless feelings in the world to do all you can in hopes of healing your child, all while knowing there is a growing evil within their body – an evil that you want with all your being to reach in and tear out, but are helpless to do so. This is where we find ourselves. We are doing all we physically can to treat Finn, but never knowing if it will be enough, and feeling utterly helpless to do more. The primary alternative treatment we are using typically causes tumors to swell before they start to shrink and die. As we continue with treatment and watch Finn get slowly but surely worse, it is agonizing not knowing if the primary cause is due to a successful treatment causing tumors to swell (and soon to die), or if it is because of a failed treatment and the tumors are continuing to grow (and to keep growing). Our only realistic option now is to stay the course and pray for the miracle of success, but it is all the more agonizing not knowing for sure. This mental anguish contributes to the turmoil that already exists in our hearts and minds.
From the moment in the corridor alcove of Methodist Hospital at the Mayo Clinic, when we received news that Finn’s cancer had spread and surgery was not an option, time seems to have stopped and we have felt as if we are living a nightmare. Detached from reality, it seems as if the world is passing by while we watch. Surely this cannot be actually happening. And yet every morning we wake after a (usually) frequently interrupted night’s sleep only to find that we are still here. Still fighting for our son’s life. Still begging God for a miracle we know is within His power, but one which He has of yet chosen not to perform. Every day that passes further amplifies the growing fear within us. A fear that is fed by the conversations we continue to have with Finn’s doctors – a growing number of whom believe in only one inevitable end.
In perhaps what are the most simultaneously heart melting and heart breaking moments of all is when Finn will sporadically ask us for hugs and kisses and follow up our embrace with “I love you mommy/daddy.” We cherish these moments with the entirety of our beings, begging God that time would stop, never knowing how many more chances we will have to express to our little boy just how much of our hearts he holds.
“May the God of hope fill you with all joy and peace in believing, so that by the power of the Holy Spirit you may abound in hope.” – Romans 15:13
In his new book, Suffering, Paul Tripp points out that suffering has a way of showing to us that upon which we have built our hope. As Christians, we strive to put our hope completely in Christ, yet when suffering comes we are quickly brought face to face with the reality of that in which our hope is placed. Is it truly and perfectly in Christ alone, or is it in Christ and something else? We have certainly found this to be true. As imperfect people, we strive to whole trust in Christ, and yet in the midst of Finn’s struggles our reactions and feelings reveal the other aspects of our lives in which we have also put hope. When these aspects are threatened, our natural reactions reveal to us just how much hope we have put in them over Christ. Thankfully, though we are imperfect, God who is perfect is not only the author and perfecter of our faith, but also of our hope.
When taking stock of where we are with Finn, it is hard to see much of any hope. There are a few shreds of potential treatment hopes, to be sure, and to those we certainly cling and work towards fervently. But in the overall picture of Finn’s battle with rhabdomyosarcoma hope is something that seemingly becomes more and more lacking with each passing day. And yet in the midst of this apparent hopelessness and our turmoil, anxiety, and fear there exists an underlying peace and joy that does indeed give us hope – and most certainly does not originate from within us or the situation in which we find ourselves.
When Paul wrote to the Roman Christians his desire for their hope, he revealed some very important truths about both the nature and origin of true hope. Paul begins and ends this sentence with the same underlying premise: that it is god who is at work as the provider of our hope (“God.. fill you”, “by the power of the Holy Spirit”). It does not come from within us or from whatever situation in which we find ourselves. Hope is not something that we conjure up in our minds or that originates in a pep talk. It is something that is objectively sourced from outside of ourselves (“God of hope”).
Paul tells us two important components of true hope, namely joy and peace. It seems paradoxical how one could find joy amidst many situations in this world, but it needs to be understood that joy is not happiness. Happiness is a surface level feeling that comes and goes with situational events. Happiness is flighty, emotional, and not abiding. Joy, on the other hand is a deep rooted and disconnected from experiential and emotional circumstances. It is a conviction. There is no happiness in watching cancer eat away at your child’s body, robbing him of the childhood and life he should be living. There is no happiness sitting by Finn’s bed, holding his hand and stroking his forehead as he struggles to breathe and winces with each movement. And yet the God of hope has put a deep seeded joy within us that tempers the emotional despair and hopelessness that exists in our life. Because it originates from outside of ourselves and our situation and comes directly from the sovereign God of hope it has the power to transcend our feelings and our circumstances and fuel our ability to keep putting one foot in front of the other as we continue along this path with cancer. Likewise, God provides us with a peace that is objectively established by the perfecting work of Christ. It is a peace that convicts us of our standing before God because of Christ and a deep reassurance of God’s faithfulness despite our temporal circumstances. When our life is thrown about in the instability of Finn’s cancer the peace of God anchors our hearts with his abiding stability.
All of this comes from God through faith in Christ (“in believing”), the purpose of which so that we would find ourselves overflowing (“abound”) with true hope in the midst of a hopeless world. No matter what the situation, because of God’s faithfulness, His unchanging character, His power, His sovereignty, and the fulfilling of His promises, we have hope from Him and that hope is focused upon Him. It does not negate the emotional and situational anguish that we experience, but it does allow Paul to write that in the midst of the suffering he considers “that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us.” (Romans 8:18)
It is to these truths that we cling and for which we praise God for giving us hope. Amidst the tears, anguish, fear, anxiety, helplessness, and overwhelming sadness we have the God of hope to whom we look for comfort. We do this imperfectly, of course, but that is the beauty of our hope coming not from ourselves, but from the perfect God who can perfectly give hope to all who believe. We know that thousands of you continue to closely follow Finn’s journey, and that with each passing day you are praying with us for a miracle while your hearts continue to break with ours over Finn’s continued suffering. It is our sincere prayer that each of you would also experience the same hope that we have: a hope found not in the momentary and fleeting things this world but an everlasting hope found in God through the saving power of Jesus Christ.
Soli Deo Gloria