Cause and Effect

Sometimes it feels like we can't catch a break and other times I think that difficult things are happening to us because we sometimes forget how lucky we are despite everything and are being sent signs to remind us. You've all been so kind saying nice things about our family and how we're raising our little warriors, but we're far from perfect and often make mistakes. Especially navigating through all of this. I believe that there are no coincidences, though, so we are responsible for what happens to us and how we react to it.

So last night after a busy and stressful day, Mario and I were having a hard time communicating about Ollie' s health needs and agreeing on a plan. Anyone who knows us understands that we're both very strong-willed people who are used to taking the  reins in any situation. Although we've learned over 15 years together how to find a mutually beneficial solution for most situations in which we at first have different approaches, we sometimes still forget to work together and compromise, or at the very least to pick our battles. Last night was one of those nights.

So the kids were already upset because of our disagreement, and then I realized that Ollie felt hot. When I took his temperature, it was 38.8 C. Fever. Deep breaths. Waited a few minutes and took it again and a few minutes later and took it yet again. Multiple times over 30 minute period and he was clearly febrile. At CHEO this means call ahead and then get to Emergency ASAP. Here we called the oncologist fellow on call as instructed. I was told they'd page him and he'd call me back. Thirty minutes later and still no call, so I called again. Twenty minutes after that he finally called me back. After 50 minutes of waiting I was not impressed, but the only alternative was to go over to Sick Kids Emergency unannounced and risk exposure to who knows what if it was packed and they hadn't prepared for us to be safe. 

We know Ollie is not neutropenic right now as his blood tests yesterday showed that his neutrophils were 1.89 (neutropenic is below 0.5). This means he can fight infections at least, although we assumed that the fever was a result of his lumbar puncture with intrathecal chemo yesterday morning.

After finally talking to the oncologist on call we had to go in for blood cultures just in case. 

The good news is that a reminder that your kid is really sick and is always at risk generally knocks the sense back into you. Mario and I apologized to the kids for making the evening stressful and reassured them that everything would be okay. 

Ollie independently began repeating to himself, "Ollie, you've got this. You've done this before and got through it. You're going to kick lymphoma's butt." Abby went over and started hugging him and disgusting words of encouragement to him as he nodded. 

It's interesting that when Mario and I are at our weakest, the kids show an incredible ability to be positive and coach themselves and each other through hard things. As a mother this gives me hope that one day when Mario and I are gone, they'll love and support each other and not be alone. 

So we bundled Ollie up, instructed Abby not to open the door after we locked it behind us, drilled her on what she'd do if there was a fire alarm while we weren't there and promised to return ASAP. We walked across the street at 10 pm with the wheelchair to go to the ER. 

Strangely at Sick Kids, you go through the main entrance to get to Emergency. This strikes me as particularly dangerous right now as everyone is exposed to any really sick kids coming in. At CHEO the design where Emerg has a separate entrance makes way more sense. When at CHEO we avoid Emergency.like the plague!

When we entered the Atrium, we were  told only one parent could accompany him, so I took him while Mario promised to be available by text and come back and get us if we didn't need to stay overnight and then left to go back to Abby.

Thankfully there was no one else waiting on Emergency and like CHEO, they prioritize chemo patients. They didn't put us in an isolation room, but I guess right now with COVID-19 extra care is taken to clean every room every time. There were a ton of empty exam rooms and very few nurses.

The exam rooms were huge compared to CHEO's emergency rooms, though. After taking the blood cultures, they determined that his hemoglobin was low and decided he needed a blood transfusion. Earlier in the day they had mentioned that it was a bit low and suggested they'd check it again on Monday. I guess it had gone down further by evening. 

So he got some A+ blood and as usual I said a little prayer of gratitude to the donor who made it possible. Ollie and I are both A+. When I met with the transplant doctors on Monday this week they had talked risks and mentioned that with COVID-19 there was no guarantee that there would be adequate stores of compatible blood for Ollie if needed during his stem cell transplant. I had quickly reassured them that I'm also A+ and healthy and a blood donor myself and if need be they could take every drop of mine to give to him. 

But seriously, if you can, please give blood and platelets wherever you are. You can register to donate at blood.ca. We can't do the stem cell swabbing event we had planned to do, and will do that after Corona virus, but this we can do. For Ollie and all people who need your lifesaving blood. Please don't let them run out when so many desperately need it and it's an easy thing to do right now for many of us. 

The transfusion began at 1 am and took almost 3 hours. 

Naturally Ollie needed to go poop several times in the night given how much he's eating due to the steroids. And while the rooms in emergency at Sick Kids are huge, unlike the isolation rooms at the CHEO ER, they do not have their own bathrooms, nor are they well stocked. So I had to ask for a commode and get Ollie to hold it while they went in search for one! They brought one back that looks like it came from the 1970s. It was still more or less functional, but not ideal. We have a better one than the hospital does. 

The nurses were kind, but honestly took forever to respond to the call bell. At one pint I had pressed it three times at 10 minute intervals and when I popped my head out to find someone to deal with the pump that needed attention, a health care aid rudely told me that the nurses were busy. Mama bear came out and I told him I was well aware of that and was sorry to "bother" them, but my 7 year old who has cancer and is awaiting a stem cell transplant needed to complete his blood transfusion. That shut him up. Apparently they use a team nursing approach so you don't get the same nurse taking care of you, but rather a team and whoever is available helps. The problem is that they're not always aware of anything that happened before they came in. Not efficient. In fact we had to wait for their shift change to happen before a nice fresh nurse finally took us up to 8A to be admitted. That was 10 hours in the ER when it wasn't even busy. We've never waited more than 4 hours at CHEO. 

And strangely they never made me sign anything to be admitted. I'm still trying to figure out their processes, though. I'm also trying to reserve judgment given these are surreal times, but so far my overall impression is that both the hospital and their processes need some significant updates. 

The nurses on 8 are kind and helpful, although everything takes longer. Even food takes 60 minutes for less quality than the 20 minutes it takes at CHEO. And speaking of food, while there are fridges on 8A in the rooms, right now because off Corona, they're not allowing parents to use the common kitchen so now you even have to wait for a nurse to heat up your food from home, like they don't have enough to do. So Ollie has a ton of food from home, but ours more efficient to order in or go downstairs and order from one of the many in hospital restaurants.

Ollie has been great and in good spirits despite this setback. He really is incredibly resilient. So hopefully he'll be out again within a day or two and we can get back to being tigerher at least for another week. Please say some prayers or send us some good karma if you can.

Meanwhile, Abby got the second of her 5 G-GSF injections. She's feeling a bit achy, but otherwise good. Took the needle like a champ!