William is doing really well; after his last cycle of VP16 and Carboplatin his blood counts took a huge dip in numbers but, that was to be expected. So, besides the dozen or so transfusions that William has received during the last two weeks, we really have not been doing a whole lot.
Today is day 1 of William's 10 day outpatient chemotherapy. William was originally scheduled to start this more than 10 days ago but, due to his blood counts being so low the entire process was postponed.
So, here we are in the month of March, a month that in my opinion most American families would correlate with March Madness, Mardi Gras, St Patrick's Day, Ash Wednesday and Lent. In our house, March will no longer be the happy and fun month in which we celebrate Grandpa's or Mommy's birthday, nor will it be the month in which we would normally celebrate our anniversary, instead it is the month that we look back on remembering the horrible words spoken by William's pediatrician "There is no easy way to say this, your little boy has cancer"
I guess it is to be expected that for the last week I constantly find myself looking back and remembering all the events that happened exactly 1 year ago. William's diagnoses was not an easy one...It took us almost 4 months filled with emergency room visits, several different pediatrician consults, and countless urgent care appointments before the tumors were found and his cancer had already progressed to stage 4.
Today there has been a lot of should-offs, could-offs and what-ifs running through my mind and heart.....We have so much to be grateful for so I will not allow myself to dwell on the negative, but still I'm sad and terribly scared.
I wrote this a few months ago in the old blog, and I feel it is appropriate to say it again.....
You know that feeling you get in the bottom of your stomach when you suddenly realize that you forgot to do something important? You know, the feeling of nausea, anxiety, stress, fear, anger, and disbelieve. It’s a sensation that turns your feelings into an emotional storm, a Hurricane Katrina in the center of your heart and mind. Well, that is the feeling that you have all time when you are an oncology mom.
Don’t get me wrong it’s not all bad, there are good days too, no, there are great days! But, even during the best of times and the most memorable days, your eyes are always on the approaching storm. It is that awareness and constant knot in your stomach that is a relentless reminder of the horrid reality you now call life...
Being an oncology mom comes with a lot of emotions, pressures, education, and physical strains!
Emotions- No, I am not talking about the everyday happiness, anger, fear and stress. I am talking about anxiety that without any warning will send you spiraling into a tornado of confusion, frustration and an emotional disconnection. I am talking about anger, hurt and a sense of helplessness that causes me to be an unstoppable blubbering mess. I am talking about the inconceivable emotions that William is attempting to deal.
Pressure- Pressures to stay on top of medication and broviac maintenance schedules. Pressure that we place on ourselves to stay on top of the treatment road maps, protocols, and all other possible test trails. Pressure to maintain a balance in our relationships and not neglect those we need as our emotional anchors. Pressure from financial strains and fears. Pressure to always be prepared for the unexpected. Pressure to be your child’s advocate because you know that no one else will be. Pressure to try harder at being the person, daughter, sister, cousin, wife, and mom that others want you to be, think you should be, or expect you to be. Suddenly, the pressure of keeping everyone informed, educated, happy and content, all falls on your shoulder, whether you want it to or not!
Education – When you enter the unwanted society of oncology parenthood you unknowingly enroll in “Oncology School”. The first week is a blur; all you will vaguely remember is the small pieces of information written on the documentation, explanation brochures, and reports provided by the medical team. The second week is spent doing research and finding associations that could provide you with support. Somehow you also try to figure out the medical language because you know that if you don’t, you will be left with more confusion than what you started with. Knowing the lingo of ANC, WBC, HGB, RBC, Neutropenia, PET, CT, MRI, Bone Scan, Nuclear Medicine, BP, and NPO will lead to a conversation with doctors that feels almost alien. Weeks 3 and beyond you will transition from student to professor. You will turn into an encyclopedia of facts and a diary of events. You will turn into a mathemagition and start gathering facts, odds, statistics and probabilities. All of the information that you now have will somehow be used to come up with an equation that will result in patterns, behaviors, results and expectations.
Physical Strains- We all deal with the pressures and stress of seeing our children suffer in different ways. Some of us gain weight and some of us loose it (yeah, I am not one of those lucky ones). Some of us struggle to regain any form of control in our stormy emotional lives, so we do something drastic to our appearance (Yep, that’s me). The point that I am trying to make here is that the only physical resemblance Oncology Parents share is the look of constant exhaustion and immense fear. We might as well be wearing a scarlet letter on our shirts; Spotting us is as easy as looking at the dark circles under our eyes, dried tears on our cheeks, smell of chemo pee and vomit on our clothes, and a constant frown line that will forever be tattooed on our foreheads. The only way we can blend in with the “normal” parents is to somehow find a balance between sleeping, being a care provider, and finding a way to cope with our new realities.
It is devastating how this storm has left areas of disaster in practically all the regions of our old life!! Randell and I are blessed because not only do we have each other, but we have the support and companionship from a lot of you! So much has changed in the last year that it is hard to determine the next year ahead of us. The only constant is that God is in control and our faith and believe in Him is what will calm our hearts and fears.
If you are an Oncology Mom or Dad, I want to let you know that YOU ARE AMAZING! We are a sister/brotherhood of relentless fighters that will defend our children’s rights for proper medical care, emotional support and the best medical staff available. We are a sorority/fraternity of parents that will unfortunately forever be bonded together by the shared pain, fears, guilt, anger, sadness and happiness. We are not alone, we have each other and the love and support of those around us.
We would appreciate every one's continued prayers for complete healing!
Loiss and Randell
The proud parent's of Sir. William