27) Giving Tuesday

If you're making any charitable donations on Giving Tuesday or this holiday season, please consider (in no particular order):

• Camp Ooch - https://www.ooch.org/camp/ways-to-give/ways-to-give
• Childhood Cancer Canada - https://www.childhoodcancer.ca/donate
• Pediatric Oncology Group of Ontario (POGO) - http://pogon.convio.net/donate
• SickKids Foundation - https://secure.sickkidsfoundation.com/donate
• Scarborough-Rouge Hospital (Centenary Site) - https://cause2give.unxvision.com/EDMWeb/DonationForm.aspx?FormID=408
• Children's Miracle Network - https://childrensmiraclenetwork.ca/donate
• Children's Wish Foundation - http://www.childrenswish.ca/donate/
• Make A Wish Canada - http://www.childrenswish.ca/donate/
• Hearth Place - http://hearthplace.org/donate/
• The Super Sophia Project - https://www.facebook.com/supersophiapurple/app/415675701824636/?ref=page_internal
• Ronald McDonald House Canada - https://www.rmhccanada.ca/donation
• Ronald McDonald House Toronto - https://2060.thankyou4caring.org/donate 
• Ontario Parents Advocating for Children with Cancer (OPACC) - https://www.canadahelps.org/en/charities/opacc-ontario-parents-advocating-for-children-with-cancer/
• The Leukemia & Lymphoma Society Of Canada - https://llsc.donorportal.ca/Donation/Donation.aspx?F=801&T=GENER&L=en-CA&G=85&NFP=1&_ga=1.46601191.1718130023.1448403989
• Canadian Cancer Society - http://www.cancer.ca/en/donate/

or any of the other great organizations that support children who have cancer and their families.

Thank you.

26) Big ugly cry

I cried yesterday for probably the first time since E was diagnosed with leukemia.

My parents had driven out to watch J and E for us so that we could take a break for a few hours. We were in the car, on our way to lunch and a movie when it happened. It was a big, ugly cry, one where my wife asked if I needed to pull over. I managed to get my emotions back under control, and we continued on our way.

The last month has been pretty awful. It's been sickness after sickness for E, with his brother J also getting in on the action. J has been ramping up his antisocial behaviour at both daycare and at home. It has been going on for a little more than 2 years, and we're at our wit's end about what to do. Name an avenue, and we've probably tried it with J. Every day last week, he attacked one of his classmates, and Friday morning was the meltdown to end all meltdowns about not wanting to go to daycare. To say the least, we've been under quite a lot of stress that's over and above the stress you have when your child has cancer. I'm having problems both falling asleep and staying asleep; my overtiredness has done nothing to help my mental state. I've been experiencing heart palpitations, random chest pains, and generalized anxiety. When I wake up in the middle of the night, I lie in bed and my whole body vibrates, as if a physical manifestation of my stress. My wife and I are both concerned about J's almost daily outbursts and moodiness, but I can't begin to have an in-depth discussion about it. My head hurts, and my brain just shuts down. My plate is full, and I can't take on anything else.

I feel that my existence in the last 4 months has been a dichotomy. I've experienced unbelievable lows, but happy moments as well. There are times of unbearable stress, but also times of almost inner peace. I feel both empathetic, and detached: I'm bothered to see that E is screaming and upset while the nurses access his port, but I don't have an emotional response. I feel numb, and coldhearted.

My family doctor tells me that this is a normal response to a situation like ours. It's the brain's way of protecting itself so that you can move past the stress in order to survive get things done. I suppose her explanation alleviates some of my worries that I'm broken or that something is wrong with me, but it's difficult. I still can't help but think that I shouldn't feel so emotionally detached, or guilty over some of the dark thoughts that pop into my head.

Seemingly, I hit my breaking point on Saturday. My stressors got the best of me and the emotions and tears came flooding out. And yes, I did feel better afterward.

25) Treatment versus the fight

You may have noticed that whenever I'm writing about E's leukemia, I abstain from using "the fight", or "the battle" type metaphors. When you have cancer, you undergo treatment, be it surgery, chemotherapy, immunotherapy, radiation, or some combination. Your outcome is affected by how well your cancer responds to treatment. There is no fighting going on, and in my humble opinion, I could argue that the body's cellular & DNA repair system has lost its battle given the fact of a cancer diagnosis.

So far, we have been lucky in that E's leukemia has responded well to his chemotherapy, and his doctors and oncologists have been happy with all of his bloodwork and tests. In terms eliminating the cancer from his body, E is not fighting: the chemo is doing all of the work. He receives his treatment, and the chemical concoction hopefully does its job and kills every Goddamn cancerous cell in his body.

That being said, there are still fights and battles going on, they are just happening on a personal and emotional level rather than at the cellular level. Some days I have to fight to get out of bed and face the day. Others, I need to battle for patience when J throws his dinner plate on the floor because he doesn't want cucumber today. It's about pushing yourself to smile for your kids when you don't feel like smiling. It's making them laugh and giggle when all you want to do is cry, or crawl back into bed and hide under the covers. It's having the energy and motivation to cook a fresh meal in order to stay healthy, when all you want is to buy takeout and stress eat burgers and poutine. It's recognizing the stress that your spouse is also shouldering, and giving them a break when they're too close to the tipping point. It's taking E to the hospital 5 times in 7 days when your household is overwhelmed by germs and you can't deal with going again, but you have no choice. It's trying to calm your unquiet mind and soothe your anxiety when your life feels reduced to waiting on test results. It's being stressed out because E can't tell you if he's in pain, or nauseous, or feeling unwell and the only way he can let you know something is bothering him is by crying. It's the unfairness of having your son diagnosed with this terrible disease at only 15 months of age. It's the worry that J may be feeling scared, anxious, jealous, or sad about E's diagnosis, and he doesn't yet have the skills to verbalize and deal with these emotions. It's the sick feeling in your stomach that (if/when) he's cured, the cancer could one day come back, and E will need to be tested yearly for the rest of his life. It's hoping that the side effects of the toxic chemotherapy drugs won't give E a chronic lifelong condition. It's knowing when you and your spouse have reached your limits, and you need to ask for help so you both can take a mental break. It's the guilt that his condition could be my fault because he has half of my DNA. It's the torment of worry that this disease could take our son. All of these things are fights and battles, and they will test you on a daily basis.

A cancer diagnosis requires: 1) treatments and 2) fights/battles. Treatments are for the disease, and battles are for living your life through the treatments. Intertwined yes, but it is important to separate the two.

24) We make our way as best we can

It's November and the number of days left in 2017 grows short. It's been about 3.5 months since E's diagnosis. July 22nd feels as though it happened both yesterday and ages ago. Transporting myself back to that awful day, I could not picture my life 3.5 days out, let alone 3.5 months. I sometimes don't know how we've manged, but on the other hand, there is no other option, so we make our way as best we can.

Life has been unsettled, especially since Thanksgiving. E has been through so much with chemo, hand-foot-mouth, croup, a fever, a cold, a lumbar puncture, and more chemo. We've spent so much time at the hospital, it feels like we should have our own ID badges. It's difficult to watch your child constantly get knocked down. And yet, he still smiles and laughs, and wants to run around and play.

I've been feeling extra stress and anxiety as of late, and I've been having problems sleeping at night. E has us up 2 - 3 times in the overnight hours because he's hungry, or unsettled, but my insomnia problems are in addition to waking up with him. When I do sleep, at least this past week, I seem to be plagued by a recurring dream: I'm being stalked or harassed by a dangerous person or entity. I wake up to the inky blackness of late autumn, and the details seem unclear and evaporate quickly. It never seems to be exactly the same dream twice: the people and setting will change, but I'm always pursued by someone or something who is bad or evil. The dream stuck with me a bit more last night, and today I've had the resulting swirling thoughts in my head. My sleep has been terrible, and I honestly don't know how I got through this week since I feel like I can barely function. I cast a critical glare whenever I see my reflection; the dark circles under my eyes, or my sunken cheeks must give people pause when I approach. Don't worry, I might look and feel like a zombie, but I am most definitely not going to eat your brain.

23) All Hallows' Eve

2017 was the first time in years that I did not carve a pumpkin for Halloween.

The month of October has been quite trying for our household. Our older son, J seemed to bring home from daycare every sickness and virus known to humankind. What J brings home, E will catch. Unfortunate how the older brother is so generous to share his germs, but not his toys. We've had at least 3 colds run through the house, as well as a bout of croup, and hand-foot-and-mouth disease. In the last 6 days, we've had to make 5 visits to the hospital. In my last post, we had returned from the hospital after E's chemo treatment.

E looking out the window of the 7th floor POGO lounge while waiting for his chemo treatment. Orange (for leukemia awareness) cape lovingly made by his godmother.

Not long after returning home, we had to turn around and head back because he had developed croup and needed to be checked out. A mask of atomized epinephrine, an oral dose of dexamethazone, and 6 hours later, we were finally discharged around 12:30 AM. The next morning was a follow-up visit to the hospital to check on his croup.

Poor E was plagued by vile diarrhea over the weekend, and Monday was another trip in to the hospital for a check-up because it had been going on for 3 days. Bloodwork was done, and a stool sample taken to culture. The blood came back fine, and the stool would probably be a 3 day wait for results.

Monday night, around 11:30 PM, E woke up, and he was feeling warm. An armpit reading taken by thermometer confirmed a fever, and we contacted SickKids to get an oncologist to call us. We stripped E down to just his diaper and brought him into our bed. By the time the oncologist contacted us, E's temperature had dropped a bit, and he was no longer registering a fever. It was determined that the best course of action would be to spend the rest of the night at home, with a trip to the hospital on Tuesday morning.

Tuesday at the hospital, more bloodwork was done, and a urine sample was taken. Surprisingly, the blood once again came back fine. The urine culture results would not be ready for a couple of days. After the hospital visit, we made a dash to my in-laws' house for Halloween. E was dressed up as a pumpkin, but we didn't take him out of the house. J was a vampire, and had a great time trick-or-treating with his cousins. That's what I like to see. This horrible disease is taking its toll on our family, but I still want J to do and experience regular kid things even though his brother is sick.

The POGO lounge door, decorated for Halloween

It's now Wednesday night, and there's been no hospital trips today. It's a suspected viral or bacterial infection, but likely more viral since E's nose is now running, he has a cough, and the diarrhea is starting to get under control.

October was a difficult month. Especially the last week. We couldn't even manage to carve a pumpkin due to the sicknesses and running around due to sicknesses. J was so excited for Halloween this year, and I'm glad that he was able to enjoy it, and I hope that he found it extra special because he was with family.

I can probably also speak for my wife when I say that the challenges of the previous month were enormous. We're anxious, we're frazzled, we're exhausted, and we're drained. But we made it through. Barely. Now it's a new month, and the calendar is flipped to a new page.

November, please take it easy on us.