Landslide

Just when you think everything is finally going right, you hit another bump in the road...

Wednesday was a good day at home despite fatigue and a bit of pain. He had slept with Mario in the living room the night before as he was too weak to climb the stairs to bed.

At one point yesterday he wanted a bath, so I helped him get upstairs. It took a lot out of him, so he stayed up there through until this morning.

Ollie had a hard night last night with pain from mucusitus (canker sores in his throat from chemo) and hardly slept. So we dozed this morning for a bit. When we woke he seemed warm, so I took his temperature. It was a bit high at 37.4, but I waited 15 minutes and took it again. 37.8. Borderline fever. He wanted to go downstairs so we slowly made our way down them one at a time until we reached the sofa. There he practically collapsed again. Abby (who was home due to the teachers strike) kept an eye on him while I frantically started repacking suitcases for him and I, knowing if I took his temp again and it was over 38 we were back to CHEO. I had intended to do this yesterday just in case, but did other things like laundry, cleaning out the freezer and submitting an online EI claim instead. 

When I came down 15 minutes later and took it again it was 38.4. Back to CHEO. You don't give an oncology patient Tylenol as you don't want to mask the fever coming into Emergency. So I called and emailed his oncology coordinator to let her know we were coming in and to alert Emerg. Her response was simply, "Shit!", which I appreciated and at least it made me laugh when I was on the verge of tears. 

Then I left a message and sent an email to Mario, followed by a call to Stephen (and MF) to see if Abby could hang out with them today after all. Amazing friends that they are, they said they'd be over in 10 minutes to get her. Poor Abby is what we call a lolly-gagger. I snapped at her when she wasn't getting ready fast enough and she was stressed and mad at me when I left, despite my apology. It's so hard to balance it all especially in moments of great stress and I felt bad leaving her. 

Ollie was sad, but resolved. He knew what we had to do and accepted it. This was a far cry from our first infection where he had a complete melt down and ran away from me to his room. The only question he had this time was if he'd have to be in isolation again. I didn't have a real answer for him. 

I put our suitcases and a requested bag of Beyblades in the Jeep and ran back in to get Ollie. Slowly we made it to the car. Thank God for that because at 33 kg I couldn't carry him. 

On the way to CHEO I asked Ollie how he felt and he replied that he was sad. I told him I was, too, but we've got this and you'll soon be well again. Then the Dixie Chicks version of Stevie Nicks' "Landslide" stared playing on the radio.  Music is always emotional for me and has such power to make me respond to what I am feeling. Tears began running down my cheeks.  

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Normally I sing and it lifts me up. Today I couldn't. It was all I could do to control my tears so I could drive and not sob loudly as I didn't want Ollie to hear and feel depressed, too.

Now logically I know this is likely to be a short lived infection and visit. But I'm experiencing a bit of post traumatic stress disorder (PTSD) now as 49 days ago we were exactly here thinking same and stayed 47 days while my son had lymphoma in his cerebral spinal fluid, was very sick and became blind. So now I'm stressed thinking we're gong to have worse happen and he'll miss his stem cell transplant. 

So I unwound myself, took deep breaths and focused on just getting to CHEO and into Emerg. 

Fortunately Ollie and I are both getting more practical about accepting our situation. Ollie didn't even fight or cry when they came to take blood cultures. It used to take 3 of us to hold him down for that. I used to say, let's wait to eat until we get to our room. Now I know it's likely 3-4 hours of waiting and we need to eat so we ordered from Tray Services and ate what we could. 

Ollie had had nosebleeds last night and this morning and a pretty major one in Emerg. The size of the clots were incredible and clogging his nose so much he was losing his mind trying to blow them out while the nurse and I tried to keep him from blowing. Finally using nose pinchers (that he hated) we got it stopped. The doctor confirmed that the bloodwork shows that he is now neutropenic (level 0 meaning no ability to fight infection) and platelets were only 8. Platelets were ordered to be sent up to our room.

Mario arrived (I told him to finish up work as there was little point in all of us waiting for something to happen) with McDonald's requested by Ollie, but in the end his mouth hurt too much to eat it.

When we got into our room (Room 2 which we've never had so I guess we needed to come back!😜), all of the nurses and Dr. Ali waved us in with sympathy, telling us they'd missed us, but were sorry to see us again and knew we wouldn't be here for long.

The platelets transfusion began (thank you anonymous kind donor) and Ollie promptly fell asleep, so I left the boys to bring in our suitcases, go down to admissions to get my pass and to pop out to Walmart to get Melatonin Gummies (the ones here are mint and what kid likes mint?!), a few snacks to feed my warrior when he wakes hungry in the night (Tray services is closed from 7 pm to 8 am!) and a new toy to reward his bravery and determination in accepting this latest setback with grace. Yes, I'm buying happiness here, but at the moment we need to get it however we can! I keep teasing that I'll beat the greedy brat out of him later when he is well.

Mario left to get Abby at about 7:30. I got us all settled again in our latest home away from home. Saw a few parents here who were surprised to see us again and sympathetic.

Now he's snoring away and I'm about to as well. 

So the clock has reset to Day 1 of admission. Praying that it's like our pre-Christmas visit and only 3-4 days as we need to get this boy well enough to get to Toronto for our consult and his transplant. Thanks for your continuing faith in our strength to get through all of this.