“Marching to the end, we’re marching to begin”— the lyrics to a song we have played on repeat for the past few months leading up to the END of a two and half year cancer fight. This new beginning that awaits us. A life that our daughters and son don’t even remember because they were too young to know a life without cancer, weekly clinic visits, isolation, and timers set to take medications EVERY DAY. Marching to begin this new phase of life— of us—- cancer free and with BIG kids now as the little years have seemed to have slipped through our hands.
But as this day of new beginnings quickly approaches and as people’s comments spark new thoughts…..I’m realizing the feelings are SO much different than I expected they would be. As I sat the evening of the night I LONGED to get to—- the night of our daughters LAST chemo infusion, bone marrow aspiration, and port access - I so so vividly remember longing for this day two and a half years ago as we sat in the hospital room being told our daughter had cancer. And here we are, coming upon the end of treatment after 797 days of fighting.
See during treatment it was step-by-step, and as so often with many things in life as you progress, you can’t wait to get to the next step. For us it was treatment phases, we got through Induction, then it was on to Consolidation, then the dreaded Delayed Intensification (which the name sake says it all, it was so intense), and on and on through each phase, longing for the next because it meant one step closer to being done. Our daughter will ring her bell in just 7 days. ONE WEEK. And while it will be one of the HAPPIEST days of our whole entire lives, it comes with many emotions.
I personally have had to stop and think about what all of this means, where we have been, and mainly (where we are today)— I don’t jump ahead too much to where we are going, well because I’ve learned I don’t have ANY control over that. As I process through this final week of treatment I have only been able to compartmentalize the theory of what a bell ringing is and what it is not. And being seven days away from a bell ringing ceremony here is where I have landed….
What a bell ringing ceremony IS:
It IS a celebration of the END of treatment. NO MO’ CHEMO- is what a LOT of people like to call it. Praise God that while we know chemotherapy has helped save our daughter’s life, we also know it is toxic and are so thankful no more needs to be used.
It IS a VICTORY and an enormous one at that. The bell ringing is like an award ceremony to a marathon runner. A podium for a warrior who has finished a grueling race. The realization our daughter has BEAT cancer hits both my husband and I at different times and brings us both to our knees, tears flow with thankfulness and I know we both will have lifelong gratitude to God, and to all who have helped carry her and us to this day.
It IS the end of something VERY hard and the beginning of something new. It is absolute grace upon grace upon grace that our daughter gets to ring that bell. Many don’t, and for that my heart is beyond shattered and will continue grieving with those who have lost their everything. It will be many of the first questions I ask God one day. Why some and not others? This is the end of something that was one of the hardest things we have had to walk through yet (and my husband has been to war and back so that says a lot), yet so many emotions are attached with it. Hope, thankfulness, grief, guilt, excitement, worry, sorrow (for all those still fighting and newly diagnosed), joy, and gratitude…..But with change after any type of trauma comes all these mixed emotions and I’m learning those emotions are normal and understandable especially after walking the cancer journey. You know what it feels like to be in a place of unknown and as you have found a new normal in the hard place, change can often feel very scary.
What a bell ringing ceremony IS NOT:
It is NOT an event where immediately after life jumps back to “NORMAL.” Many people have said to me, “Oh my goodness you’re almost there, and then you can LIVE A NORMAL LIFE AGAIN!” While I too believed this two and half years ago before we were knee deep in this journey I now know too much to know that THAT statement is NOT true. Life will never be what it was before a cancer diagnosis. A dear friend of mine who has walked next to me and shared so much of her counseling experience with me put it to me like this:
“There is a difference between intelligence (knowing something) and wisdom (knowing and feeling the effects of something). One can be intelligent and know a lot about life and experience. That intelligence is useful, but it isn't radically life-altering because it's a mind and not heart kind of understanding. Wisdom, however, engages the heart. You know something, and you feel it deeply. It's complicated, nuanced, and often exhausting and overwhelming. There's a reason why God has wisdom and not intelligence. What kind of God would He be if He were only intelligent and not wise? A cruel and unloving one. But He is wise. And so He calls us to be wise in our own ways. Ecclesiastes puts it best (1:18): For with much wisdom comes much sorrow; the more knowledge, the more grief.”
After you have walked alongside your child or any loved one through a trial such as cancer, your heart and mind are rewired. It’s an education, and a wisdom that will NEVER leave you. Because of all that you know, seen, and have heard, all you have been through, you know life just isn’t going to start now and be carefree here on out. You know too much, all has been radically altered and you also know how a split second can change the trajectory for years to come. That stays with you FOREVER and while new beginnings are ahead, a mind full of the wisdom this journey has given you can leave you walking with a limp all your days ahead.
It is NOT free of chains. I remember thinking I can’t wait to be done and never come back. Little did I know that reality wouldn’t happen for YEARS to come. Emmy will not be presumed cured until five years after ringing this bell. She will continue to be watched closely for every month the first year, then every two months the second year, every three months the third year, etc until the five year mark. Thankfully, we have grown so fond of our care team, and I can’t imagine life without our amazing doctor and nurse, so I am so glad we will have them to follow Emmy and keep a close eye on her, but I can’t help but think these appointments will be a constant reminder of the brokenness on this side of heaven. The bondage of cancer, sickness and the weight it carries. While the “WEIGHT” of cancer treatment itself has been removed, there is still a chain there.
It is NOT an immediate re-entry into all things. I used to think I couldn’t WAIT to jump back into everything: people, activities, LIFE, etc. After the isolation that has taken place for our family, we have learned that a slower pace fits us best. We were FORCED to live counter-culturally, and we are thankful we were. We don’t want busy schedules and running from one thing to the next. Intentionality is something this journey teaches you and we will continue to try to do our best at just that. Additionally, Emmy’s counts will take a little bit to climb back up and her immune system needs to recover so as a family we have decided re-entry will be at a crawl, then a walk, (then maybe) just maybe we will hit a running pace but we have learned to savor the slow. One of the girls new favorite songs called “Big Love, Small Moments” by JJ Heller says “Everything is sacred when you take time to notice” - we couldn’t agree more and we want to make sure we have time to notice all the things right here, right now around us. We want to take the time.
And so it is with MUCH anticipation as this bell ringing day falls upon us, we will approach it “stepping forward with grit anchored in grace” by all that has been, and all that we hope for to come in this new beginning. Our family is so beyond excited and hopeful for what this day holds, yet we are going into it forever changed by this journey. We are stronger, braver by faith, filled with lots of new wisdom, battered and bruised, but our hearts are so filled to the brim with thankfulness that our girl has made it this far, and THAT is worth celebrating and shouting from the mountain tops— thank you LORD for sustaining her and our every breath!!