The world of childhood cancer is all encompassing. For 11 long months we lived in this seemingly alternate universe, while the "real world" continued to go on around us. We were no longer a part of it, and in those early months we forgot it even existed. The cancer world became our new way of life and, eventually, "new normal". Eight hour "out-patient" hospital days, 12-hour waits for a hospital room, 5-day hospital admissions, daily injections at home, port access, chemo, radiation, anesthesia, blood transfusions, platelet transfusions, diaper changes with blue gloves and cotton balls, monthly visits to the ER with 2am hospital admissions. I could go on. I developed a new vocabulary which included words like ectomesenchymoma, neutrophils, doxorubicin, vincristine, iphosphomide, etopiside, pentamadine, ativan. I not only used these words in my daily vocabulary, but I could spell them too. I know what "spec. grav." is, absolute neutrophil count, the function of red blood cells, white blood cells and hemoglobin, and the range my son's counts needed to be in to avoid a blood transfusion and receive chemo. What, no nursing degree? All part of being a "momcologist".
As dreadful as the cancer world was it became my life. I couldn't separate myself from it. In the limited situations in which I was with someone who didn't know our story, for instance, getting a hair cut, I felt overly anxious and out of place. Leaving the cancer world and partaking in "normal" activities didn't feel right. My life was so far from normal that I felt like an impostor, or an actor in a play. Cancer mom became my identity and I could not break free.
The first month or so after JR entered remission I struggled tremendously with depression. I felt as though I were on the verge of a major breakdown, and suffered trough several "mini" breakdowns along the way. I felt like I was living precariously close to the edge of a very steep cliff. I don't know exactly what the fall off of that cliff would have looked like, but it never did come. At least not yet. I was struggling on a daily basis during the initial few "hospital free" weeks, and I didn't know how to help myself. I knew I was really in trouble when JR finally had his one month appointment at Duke and, as soon as we entered the hospital, the weight lifted. I felt comfortable and confident in my environment for the first time in weeks. I was surrounded by our nurses and doctors who had become family. I could talk with them in a way I could talk with nobody else. They had been there with us every step of the way. They had saved the life of my son.
The busyness of our move has distracted me from my emotional recovery for quite some time now. But the dust is beginning to settle, and I can feel the struggle kicking back in. I realize I have endured severe and prolonged trauma. I realize that I am no longer in crisis mode, and the reality of the fears we will always live with are sinking in. Once our new insurance has kicked in I plan to begin counseling. Brandon and I are eager to find a church and develop community. We deeply miss our church and church family in Cary.
In the dark moments I turn to God. I have more anger now. But when I talk to God about how I am feeling, I feel comforted. I'm reminded of His promise to weave all things for good in the lives of those who love him and trust him. When I pray I remember His ultimate gift of salvation, and am comforted by the knowledge that one day suffering will be no more. In the mean time, I need to take care of myself and my family.
This month of September, please keep the children and families battling cancer in your prayers. As well as the families with children in remission. And especially the families of those who have lost their child to this disease. So many of us are utterly broken. Seven children die of cancer every day in this country. I have witnessed the deaths of two two-year-old children along our own journey. Cancer is the number one leading cause of death by disease in our children, and number two cause of death after accidents. Approximately 1 in 300 children will be diagnosed with cancer before the age of 20. JR is not, or will not be, the only child you know battling cancer.
Two Septembers ago I was 7 months pregnant with John Ryan, and completely unaware of the prevalence and impact of childhood cancer. Today we are very VERY aware. Please join our family in helping to raise awareness this month. It matters. Awareness leads to funding, funding to research, and research to CURE.
Ideas for raising awareness:
Change your social media profile picture(s)
Post/Share on Social Media
Wear a gold ribbon
Donate to childhood cancer research
Participate in a local childhood cancer awareness event
Our family is participating in the Four Seasons Parkway Run & Walk on 9/28 to benefit cancer research and survivorship programs at CHOP. Money raised will directly benefit JR as he is cared for at CHOP throughout his childhood. If you are in the area or willing to travel, please consider joining our team! If you can't participate in the event, please consider donating to the cause. Our team page can be found here: Team Never Quit JR!
Thanks All, and GO GOLD!