Sick Kids VS COVID-19

Tuesday afternoon Ollie had a low grade fever. He's had a stuffy nose, but no other symptoms until the fever. So we contacted Bina, Dr. Alexander's nurse and explained the situation and were asked to come in to Emergency. 

This immediately made us nervous as we knew that as of last weekend, Sick Kids had discovered two kids with COVID in the hospital and 1 nurse. As of Tuesday morning we had learned that one of them had been on a Hematology/Oncology unit. The Bone Marrow Transplant Unit (8B) to be specific. This is on the same floor as the oncology ward (8A) that he has been admitted to before and the Day Hospital (8D) that he has his lumbar punctures in and would be back to this Thursday.

So off we went to emerge with this additional stress hanging over us. On a positive note, at least Ollie's neutrophils are higher (12!) than they've been in 5 months. 

Thankfully this overall visit was a better experience than our first time in emerge. The nurses were kind and efficient. They had a little trouble getting blood out of Ollie' s central line at first so they called in an expert nurse who had the magic touch and made it work. 

They also had to do another COVID swab (Ollie' s third since arriving at Sick Kids and happy to report all three have been negative) and he had a poke for blood cultures due to the fever. He cried a little at each of these, but submitted to them grudgingly.

They started him on fluids and we waited. Eventually we saw the ER doctor who was super sweet and kind to Ollie. She took time to check everything to ensure he didn't have any rash, cuts, bruises or any other possible sources of infection on his body. She then told us we needed a new chest x-ray and after that she'd call oncology and the oncologist on call would be with us when available.

Emergency was much busier than the last time we were there, but still calm. This time though, everyone was using PPE including gowns, masks, surgical caps (with buttons sewn on to relieve their ears from the masks), goggles and gloves. They were super careful to change gowns and gloves each time they came and went. 

X-ray went better this time as we used the one near emergency which was more modern and roomier than the weird room upstairs they sent us to last time. They said they only use that old one when they're really busy or backed up. Ollie was also much better behaved for this one and there were two super nice technicians. Again full PPE used and they were wiping down the equipment including my lead vest as we were leaving. With all the x-rays and CTs we've had, I've never seen them wipe down the parent vest before hanging it back on the wall.

After 6 hours there, with perfect bloodwork, no obvious source of infection and a good chest x-ray, I talked to the oncologist on call about my concern about Ollie being admitted with a known exposure to COVID nearby. I assured her that we were living literally across the street from the hospital and could run him over in his wheelchair quicker than an ambulance could even get to us. She was terrific and so patient with Ollie who was very stressed. Since he was clinically well otherwise, she knew it was best to minimize all exposure for oncology kids, and he had appointments at the hospital Wednesday and Thursday, she decided we should give him a high dose of antibiotics that would be good for 24 hours and have him checked out the next day.

At this point I was thrilled, but Ollie was upset. He didn't want to leave the hospital. The doctor agreed to give us a few minutes as she went to order the antibiotics. We had a long chat about how Ollie feels safer sometimes being in the hospital where he knows nurses and doctors are right there to help if anything goes wrong. Boy did I understand that feeling. This is the crazy thing about a critical illness. On the one hand you never want to have to go to the hospital, but on the other when you've been through so much already where you needed constant medical attention to stay alive, you still feel safer in a place you never wanted to be on the first place. Just one of the cruel ironies of this disease. 

Maybe it is the same feeling that you have after being in prison a long time and getting out? Like you aren't sure you can make it on the outside? The supposed reason that so many re-offend and soon after their release. Or maybe I've just watched too many episodes of Orange is the New Black. 

One thing is for sure, when we're really free of cancer I don't ever wish to be back in a hospital feeling like this again. I can't imagine being those poor families who get back to normal life and then relapse and have to do it all over again. We are sincerely hoping and praying that all of our relapses have happened so close together in a short time to spare us that later.

So I called up the troops because "We fight as one" and put Abby and Mario on speaker phone. They'd been at the condo praying all day that Ollie didn't have to be admitted. We all talked to Ollie and managed to convince him that we were all keeping him safe. That Abby had discovered his bump in the first place and had gone through the pain to donate the stem cells that will eventually save his life, that Mommy had actually diagnosed his specific kind of cancer a week before the doctors did (and she once diagnosed his Scarlet Fever before he saw a doctor - who did not believe her before the positive test confirmed it in his office!) and was the one who recognized he was having seizures in the ICU on January and Daddy who insisted on better pain management for him when they thought he had meningitis and because of that we were transferred to the ICU where they finally figured out it was actually lymphoma in his brain. We reminded him that he was at emerge at that very moment because we were lovingly taking care of him and wouldn't take chances with our most beloved boy. 

So we agreed that Mom and Dad (one of whom always sleeps with him now anyways) would check him every hour just like the nurses and we would come right back if he told us he needed to or we thought he did.

So Abby and Daddy walked over to the hospital at 9:15 pm to walk us "home". 

We fed our ravenous boy and got him to bed. I am still uncertain if we can even order food to the ER as no one has ever suggested it to us even though we have been in the ER for 8 and 6 hours respectively now. Thankfully we always know to have many snacks, juice and water in our bag. Honestly Ollie won't eat the hospital food there anyways and they stop delivering dinner at 6:15. 

Our boy was feeling better today and even managed a couple of little grins while being a bit of his old sarcastic self. He had his optomology exam today and Mario took him. He was very stressed because he can't see as they want to pome around near his eyes. Imagine someone coming at you when you can't see it. The anxiety of anticipation is all too much sometimes. 

The good news is the MRI Sunday and optomology exam and photos today showed that the optic nerve is less inflamed than it was three weeks ago when he relapsed. Optomology wants to see him again Monday to see if it continues to improve. Either way, this is an indication that the Ceretinib is working. The moor puzzling news is that the MRI also showed that there are a few little spots of something appearing on his leptomeninges (covers the brain) which may be nothing, but given they didn't appear on previous MRIs is concerning. The doctor did say it would be unusual to see it working in the brain and causing his optic nerve to calm down and also see new spots as generally if it's working, it's working everywhere. 

Tonight he spiked another minor fever after being fine all day. The oncologist on call felt given it was low grade again, we should stay home unless a new symptom occurred or the fever wouldn't go down or got worse, even with Tylenol. She consulted Dr. Alexander about his LP tomorrow and they still want to try if he isn't feverish. So tomorrow if he's okay in the morning we go and if he's still feverish we may still have to go, but potentially to be admitted and wouldn't have the LP. The LP should definitively tell us if the cancer cells are less or more and therefore whether the new drug is working or not. 

So I don't know what the fever is trying to tell us, but I feel like maybe the COVID case on the very ward where we were supposed to be, after having killed his immune system to allow his sister's stem cells to graft is the reason we're not there. It likely sounds crazy to be grateful for a relapse in his brain that saved him from COVID, but I can't imagine why else we are here instead of there right now. I try not to read into absurd things, but nor do I want to be that silly guy in the meme who keeps refusing to accept help because he's waiting for God to save him, never realizing God sent him multiple people to help save him along the way. 

On a positive note, the other CHEO family that is there in the Bone Marrow Transplant Unit confirmed that they were all tested and are negative and that their little O has grafted, so he's doing okay. Great and relieving news.

So send us your prayers, positivity, karma, light, vibes, whatever you got tomorrow for good news. Both on the fever front and the kicking lymphoma out front. Neither COVID nor lymphoma are taking my boy!