Moments
"Yes, it's confirmed. It is alveolar rhabdomyosarcoma, although your son is a little old to have this particular childhood cancer…" What?!?! Nick? He is only 18! He graduates from high school next month. "Are you sure?"
"Yes, it's stage 4." The words took a few seconds to register. Then a glass of water spilled somehow and my hands shook as I tried to clean it up and listen to the procedures that needed to be done before hospital admission.
"He only has a 10% chance of survival." How can I gather myself before going back into his hospital room? How can these moments of disbelief turn to fear so quickly?
During Nick's first round of chemo, a very wise nurse told me on the first day, "Our doctors and nurses are excellent. The hospital is excellent. However, he is YOUR son, YOUR responsibility – so know what is going on – always. Ask questions; get copies of everything; research the chemo drugs; keep notes on what pain medications work or don't work. I'll help you learn what numbers to be concerned with on the lab results." She made a difference in helping me regain moments of clarity and confidence.
It's 2:00 a.m. and the hospital is quiet, with the exception of Nick's IV monitor slowly dripping lethal chemicals into his very weak and frail body. The room is dark and comfortable. Although I'm utterly exhausted, I cannot sleep. I can feel the moment fill my heart with sadness and loneliness as I watch my son sleep. I begin to pray, but this time I pray to our Holy Mother, Mary. Perhaps she has the maternal comfort I so desperately need right now - a perfect Mother who knows of all the emotions that come with watching her Son suffer. Together, with the presence of my own mother and grandmother up above praying with Mary, I find peace at last for the night.
They came in singing, "You Are My Sunshine" - dressed from head to toe as fairy godmothers, including wands. This was their first visit for Nick's first round of chemo (a round comprises a full week in the hospital). My two best girlfriends were there when he was born so they really are his godmothers. Subsequent hospital visits through the following months included: cowboys, pirates, clowns, Groucho Marx doctors, Thing 1 and Thing 2, penguins, grapes and the Incredibles. They always bring armfuls of treats, presents and laughter. These moments of true friendship are invaluable and reverently cherished by both me and Nick.
Nick had enough credits to graduate when he was diagnosed so his principal and teachers let him determine how much he could handle through the rest of the school year. When it was time for graduation, his white blood count was barely high enough for him to even attend. Upon arriving for the ceremony, we were instructed there would be no clapping until the entire class had gone through the line. Family and friends patiently waited for his name to be called. Occasionally, there would be a few whistles and sporadic clapping. Finally, his name was read, "Nicholas William Raitt, Magna Cumma Laude" and the entire side of his graduating class stood up with loud applause and cheers – simply stunning to witness the burst of enthusiasm in the school's color of blue. He was a full foot off the ground the rest of the day. In a moment of pride, tears flowed in gratitude that he made it.
Nick has received many spiritual blessings for healing. Not only did our church dedicate an entire day of fasting for him, but hundreds of our youth carried the fast on through the evening. He has received a prayer shawl and a prayer quilt. Several denominations have included him in their church prayers and prayer chains; a few people we know, thousands we don't know. But the strongest moment we experienced in the power of prayer came during one of Nick's most difficult nights. He had severe sores in his mouth, throat and nose. Due to the mucositis, he couldn't swallow or talk and was on a feeding tube. My 6'3" son weighed only 125 lbs. He was home sleeping on the couch, too weak to go to his own bed. He slept with his prayer quilt and shawl wrapped around him. As I walked by, checking on him, he woke up and whispered, "Mom, would you pray with me?" For the first time in many years, he let me hold him in my arms as I softly prayed with the prayer quilt absorbing our tears. We were blessed with the amazing relationship between mother and son and the comfort that He is with us and everything is going to be ok.
We have two other children living at home, too – daughters ages 16 and 11. Both are avid softball players on competitive traveling teams. One beautiful fall night, Nick was fresh out of the hospital, on a feeding tube and very weak. But he felt up to sitting in the ballpark with blankets and recliners in the grass. He embraced the opportunity to enjoy the atmosphere: a full harvest moon; the smell of hamburgers and fries; the perfect temperature; the cheers of the parents; the crack of the bat; the call of "SAFE!"; the spectacular view of the Wasatch Mountains as a backdrop to the ball fields. Moments of being back to normal, moments of serenity, moments of family.
Three months before Nick was diagnosed, he had enlisted with the Utah Army National Guard, just after his 18th birthday. The plan was to attend drills one weekend a month, boot camp in July, lock in a position for Apache crew training, college for 4 years (he had already been accepted at both the University of Utah and Utah State University), and finish with flight school. Once diagnosed, this was all put on hold. However, his sergeants all remained very close to Nick, bringing him military scrubs and medals to the hospital. With the help of Nick's grandma, the Guards also made possible for Nick to take a 2 hour flight on a Blackhawk helicopter – a true thrill. Later it worked out that one of the weekend drills was being held before a round of chemo (#8) when he usually feels pretty good. So, with the permission of his sergeant, he attended the drills, participating in everything except the 2 mile run. He came home with bruises on his back from doing sit ups on the hardwood floor and he was exhausted. On Sunday, he was at it again for another full day. He collapsed once he walked through the front door at home. He said it was the verbal public acknowledgement from the master sergeant, in front of all the soldiers, thanking Nick for his heart (most soldiers didn't even know he was in the middle of treatment) that made it all worthwhile. Even cancer can't hold back these moments of determination and internal fortitude.
Alveolar rhabdomyosarcoma, vincristine, etoposide, adriamycin, ifosfamide, mesna, maxillectomy, resection, viable cells, radiation, tumor board, second opinions, ANC, neutropenic, Hickman port, transfusions, MRI, CT, PET, bone marrow, surgery, biopsy, malignancy. Monumental moments of confusion.
It is the nurse who brings me a chilled Diet Coke at 7:30 a.m. after a long night in the hospital, without asking, while I'm trying to find my glasses to read the latest lab results; it is the PR guy at our local hockey team donating 100% of our ticket costs to the Huntsman Cancer Institute, introducing Nick and our family to the team and giving Nick free tickets - not only to our local team games - but to the NY Islanders; it is the get well letter and lei Nick received from a 3 year old girl in Hawaii; it is a special "gratitude rock" sent by a 6th grader; it is 6 of his closest friends visiting the hospital to play rambunctious games of dice until after midnight; it is the maintenance man helping me find a fresh cup of coffee at 5:00 a.m. in the hospital; it is the 40 get well letters written from our church youth group; it is the neighbors and friends that offer to let our daughters spend the night, without hesitation, when there is an emergency; it is the cab driver who frequently drives my husband in Chicago that brought back a sand sculpture from the Holy Land; it is the people who post words of encouragement on Nick's blogsite; it is the man who made a pen out of wood, sent along with a card that says, "Tailwinds Forever"; it is a breast cancer survivor sending Nick a huge package of fun things, specifically to offset the side effects of chemo; it is his 16 year old sister making him a blanket out of camo material; it is his 11 year old sister showing him no mercy in Uno; it is my husband giving me unconditional love, support and freedom for me to be where I need to be – these beautiful moments of kindness.
Moments of chaos or moments of balance? Staff meetings, laundry, email, grocery shopping, presentations, birthday parties, travel, softball practice and tournaments, conference calls, church, dry cleaning, weddings, cell phones, haircuts, house guests, dentist and doctor appointments, elementary school music recitals, parent-teacher conferences, writing newsletters, hockey games, paying bills, watering plants, feed the dogs, romance, lunch with girlfriends, see a movie, school shopping, payroll, fix dinner, tennis tournaments, prom, room mother, funerals, clean house, change oil in car, snow blowing, overnight hospital stays, braid hair, workshops, research, date night, holidays…
While finishing dinner one night, our 16 year old daughter asked if we had any 3x5 cards at home for her homework. No. She asked if we would go get some for her. No. We reminded her she could drive herself the whole ¾ of a mile to the store, but she lamented, "But look at me! My hair is a mess, I have on sweats, no makeup – you never know who I may run into and….", until Nick finally said, "CARLY! I have ONE eyebrow! No hair! No eyelashes! I've been to the store TWICE today!" In a moment of perfect perspective, she smiled, put on her shoes and went to the store.
So many moments, yet all are temporary. It is only learning from the experience that remains in my heart and mind. The sorrow and pain are fleeting, if I consciously envision my hands letting go after the moment has passed. There is another moment waiting for me and it could be hope or peace, ready to replace the moment just released.
Moments have made me stronger. I have a stronger attitude and power of gratitude; a stronger awareness and knowledge base; a stronger stomach; a stronger annoyance of trivial complaining; a stronger appreciation of time; a stronger marriage; stronger ability to love my husband, my children, my friends; stronger faith in God.
As of this moment, April 2008, Nick is in remission.