Wednesday, August 10, 2016

Our New Normal

It's been a really long time since I've posted. And since I've been completely unable to sleep and have felt the urge to write about why. Sleep hasn't been something that comes easy over the last couple of months but tonight is one of the worst for some reason.

I have a beautiful family. I'm not just saying that. I have a husband who treats me like the most important woman in the world. He's loving, caring, compassionate, funny, handsome and kind. He listens to me and puts up with my silliness. He's strong and is my rock when I need him to be. And he's someone I am proud of and proud to be with. I have a son. I have the most incredible son. For 4 years old, he's brilliant. He's sweet, funny, beautiful with his blond hair and blue eyes. He's smart, compassionate and wise beyond his years. He is the epitome of an "old soul" and is my absolute hero. I am, because of these two boys, the luckiest woman in the world. My world with my boys has been nothing short of my version of perfect for as long we've been us. Until now...

Cancer. Just typing the word is hard. It's a scary word. It's sinister and depressing and unforgiving. It's the last word anyone expects to hear. Ever.

Cancer. Your four year old has cancer. These are words my husband and I were told 63 days ago. We brought our son to the hospital with what we thought would be arthritis and we were told he had cancer. A malignant rhabdoid tumor to be exact. This is a very rare, very sinister, very aggressive, very lethal type of childhood cancer. And our baby boy has it. He has a large tumor on his tailbone that spread to two more places in his tiny body. Which puts it at Stage 4 cancer. Our initial meeting with the oncologist was horrifying. She told us this type of cancer is so rare that it only has a 25% survival rate. Because of it's rarity, there isn't enough information out there to come up with a solid treatment plan so she gave us two treatment options and we had to decide between them. We are not doctors. We're trying to come to terms with the fact that our baby has cancer. How do you even begin to do that? And now we're being asked to choose a treatment plan. I asked what would happen without it. At that moment, the idea of putting my baby through any more pain was just too much to bear. So I asked. And was told that without treatment, my son wouldn't live more than a few months. With treatment, at that time, we have maybe a few years. Neither answer was what I wanted but we chose what we hoped was the more aggressive option.

Over the last 63 days I have watched my son. I watched  him stop walking. I watched him stop being able to control his own bladder and bowels. I have watched him stop playing, talking and eating. I have sat next to him in countless hospital rooms, wishing I could take his place and take his pain away. I have prayed to whoever is listening to me to trade places and to help him find the strength to get through this. And to give me the strength to be the mom he needs me to be. I have cried myself to sleep night after night, have had to walk out of the room so he can't see me upset. I have had to give him medicine that no four year should have to take, let alone know how to pronounce. I have watched my husband, my strong and amazing husband, give our son countless catheters to help him empty his bladder when he couldn't. I have watched my son be put to sleep for surgery, MRI, CT scans and radiation. I have watched my son be fed through an NG tube. I have watched my son, my beautiful four year old boy, never stop fighting his fight. And I have watched my family grow stronger and closer than we could have ever imagined in the darkness days we could have ever imagined.

Over the last 63 days I have watched my son endure extensive chemotherapy and 25 radiation treatments. Twenty five treatments on his tiny little body. And I have watched him do it all with a smile on his face and a positive attitude. He has more strength at his age than anyone I have ever met. He has gone through these days, having endless tests, bloodwork, doctor visits, catheters, and medications without asking why. "Why did this happen to me, why do I have to do this?" Instead, he says ok. "Ok Mom, let's go to radiation." Yes he has cried, but only when the nurses take the tape off of his port-a-cath and when his tube bothers his nose. He has cried because his back has hurt him where the tumor is or when his feet hurt because of the chemo. But it never lasts long and he always finds his happy.

Though we don't know what is happening on the inside and won't for a few more weeks, we are watching our son exceed expectations with his treatment and are watching new milestones every day. Just last week he started walking again and this week, without holding our hands. He has regained all bladder/bowel function and we are happily changing numerous daily diapers again. We are watching him be more playful, happier, more alert and a bit friendlier to the medical staff (but who can fault a kid for being mad about getting pokes!). We are watching him grow and blossom into an incredibly strong little boy.

Cancer. No one ever expects to hear the word. No one expects a doctor to tell them she thinks it may take their son's life. It is the most terrifying and traumatic experience in any parent (or person's) life. It brings out the worst feelings, a certain darkness that can't really be explained. But in that darkness, my family has found hope. We have found strength and support. We have found love and friendship. We have found ourselves and each other. And we have found a little boy who will hopefully continue to exceed expectations and continue to fight his incredible fight with the same grace, strength and stoicism he has had thus far.

#caringforcam
https://www.gofundme.com/28wgxczg
http://www.caringforcam.ca/

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