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!

It's all in your head...

We've had a rough day. It started out with throwing up. Never a good way to start your day. Mario had taken the day to help and arrived shortly AV (after vomiting). 

All morning Ollie was restless and unhappy. Partly because he didn't get to go home again today and partly just because he felt rotten and is tired of feeling that way. He has been having intense pain in his head and that worried us and the doctors. We've been doing a lot of head rubbing and for massaging to try to help him.

Ollie endured a neurological test this morning (protesting loudly that it was stupid and these weren't even real medical tests!). Everything apparently seemed okay.

I met with Social Work this morning for my own peace of mind and later we all met with a psychology resident to talk about Ollie's anxiety. He has always been a sensitive and sometimes anxious kid, but lately it's really tough and understandably so. The really good and surprising news is that we are apparently killing this parent coaching/managing anxiety thing despite often feeling we aren't. The psychologist told us every strategy we are already using to calm him (gentle touch, one voice, white noise, telling him how powerful his brain and positive thinking are, etc.) are things they have to teach most parents to do when they start working with psychology. 

So I guess we are ahead of the game. I just wish it was a game we knew all of the rules to. Most of it is stuff that worked when they were babies and we didn't know what else to do. They are going to help us to teach Ollie to show us when he is feeling anxious before it escalates and help us to apply strategies to avoid the escalation versus the ones we are currently using simply to help him recover after he has already escalated. I did feel good after meeting with our mental health team. It can be scary to put everything out there about your parenting and have it judged.

At one point this afternoon the doctors told us they wanted a CT of his head to rule out a blood clot that can sometimes occur in chemotherapy patients. Ollie started getting worked up about this as it required another IV insertion (third this week) so that they could inject contrast into him. In order to calm him we had to give him Atavan (a sedative) and rock him while rubbing his head.

At this point he started mumbling his words like he couldn't form them and then couldn't suck water into a straw. We were very stressed. At this point the doctors wanted an immediate CT.

We got him calmed and onto a gurney where he promptly threw up all over himself. Changed him, bedding and gurney and we were on our way. Ladies in CT were incredible (as always) despite being short-staffed (Mario and I helped to move him from gurney to backboard). Then we lead aproned up and stayed with him.

A bit later after we were back in his room and settled, the doc confirmed that CT was clear, but said if fever is not gone tomorrow they'll call in infectious diseases to be sure they didn't miss anything. Worst case scenario Thursday he'll go for anorher lumbar puncture to rule out meningitis, but we hope he won't need it.

Tonight after much drama they managed to get a stool sample and will test that, too, so I am hopeful we'll finally get to the bottom of this. We hope to be home for at least a few days before starting round 3 of chemo next Tuesday.

The day wasn't all bad...we did get some news on last week's scans to check on the progress for his lymphoma, but I'll write that shortly in a separate post.

So I am just rubbing his head and trying to get him through this however we can for now.

Please keep praying that this illness passes for him quickly so he can stop being in pain and we can get home. 

Darkness, Anxiety and Morphine

This is Ollie lying in a dark room after begging us to take his nausea and headache away.

I am not trying to take horrible photos of my son's suffering, but in the interest of raising awareness of lymphoma and childhood cancer and their affects, I need to be truthful about what it's like for him and for us going through this. 

This is day 5 of fever, nausea, headache and diarrhea. Many of you are probably battling same at your house with your kid or another loved one. It always feels rotten to watch someone you love be ill. It's worse still when you don't know how strong they really are because they've been undergoing chemo for months. 

We are fortunate in that Ollie's red and white blood cell counts, neutrophils and platelets are looking good. We just don't know when the fever will finally break and allow us to see the proverbial light at the end of the tunnel. Plus our tunnel leads home for a few days and then brings us back here again next Tuesday to start our deferred round 3 of chemo. 

Thankfully Dr. Abbott (the head of Oncology/Hematology whom we hadn't seen since the day we were diagnosed) was on rotation this weekend and gave Ollie the choice to stay after his fever broke and start chemo as soon after as possible, or go home for a few days to rest and prepare mentally to tackle round 3. Ollie chose home and is anxious to get there. That can't happen into he has been fever free for at least 24 hours.

The occasional vomiting, diarrhea, and even nausea aren't so bad. It's the headaches that are brutal. I've always gotten terrible headaches and had migraines since I was 10. It seems my little warrior unfortunately takes after me in this way. He has begged for medication to get rid of his excruciating headaches and since chemo patients can only have Acetaminophen (Tylenol), but never Ibuprofen (Advil), pain relief options are limited. So we've had to resort to morphine a couple of times. Morphine always seems like some end of life palliative drug that is given, not something to ease a headache. 

Add to this the anxiety that Mario and I have...what if it's really lymphoma in there causing this? We know logically that his first scans and lumbar puncture showed that he did not have lymphoma cells in his blood or his cerebral spinal fluid (meaning not in his spine or his brain) and that his very first day of chemo treatment on November 28 (all lymphoma dates are now burned into my brain) they injected the chemo drugs into his spine as an insurance policy so it never gets in there or to his brain. We know these truths, but when you have too much time to think as I do watching him in hospital and Mario does when Abby goes to bed and the house is quiet, your brain struggles to accept the logic, always finding the fear easier to believe. Ollie had updated CT and PET scans last week, but we're still waiting on results to ease our minds.

So we wait and try to be patient, making him as comfortable as we can, trying to keep him from getting angry about being here so he doesn't waste what little energy he has fighting. Today he told me it was all my fault as I lay beside him, running his back and head trying to get him through a tough afternoon. Reluctantly as he felt calmer from my touch and patience he admitted it wasn't ALL my fault. LOL People say motherhood can be a thankless job and in this moment I was feeling it. A dear friend today told me he'll appreciate that we did everything to save his life...when he's 25. So there's that the look forward to! 😜

You also start becoming a hypochondriac yourself, washing hands constantly, hugging but not kissing him, no sharing of food and not breathing on him. Mario and I have worn masks here constantly so as not to expose him to anything else and not to get this virus ourselves and take it home. My stomach feels off today and my first thought was I caught it, but I feel fine otherwise, so am thinking it's likely just my anxiety around all of this. 

Don't get me wrong, we've got this, but it is tiring and we want this battle to be over so we can ready for the real one next week. 

I also miss Abby desperately and she is sad that we're not all home together. We video chat, but it's not the same as snuggling at home. 

Despite all of this, we are okay. Perspective is everything. I have been chatting online with Kelly, mom to #StartwithHillary (startwithhillary.ca) @StartwithHills who is a champion for stem cell donation and getting swabbed because her daughter has Aplastic Anemia and will likely need a stem cell transplant in the future. They have to worry daily about whether or not their daughter will have enough blood to live or need a life saving transfusion. They were exactly where we are now for 27 days when they first diagnosed her, so if she can do 27, we can do however many we have to to kick this bug and be ready to battle lymphoma next week. 

I promised her mama I'd tell dozens more people about Hillary to get more folks out to get swabbed. If you're between 17 and 35, please consider getting swabbed. It takes moments and you could save a life. It could be Hillary's or my son's if he needs a stem cell transplant later on if chemo doesn't cure him. It also becomes part of an international registry so you could save anyone really! Learn more at: https://www.blood.ca/en/stem-cells

Until the fever passes, we're here and making the best of it. Hope you are home with loved ones and virus free!

Wish there was an antivirus for all viruses!

It's after midnight as I write this and I should be sleeping, but I am too keyed up to sleep yet. 

This morning when Ollie woke he complained he felt sick and had a headache. I took his temperature and it was borderline fever at 37.8. So I waited a few minutes in between and took it a few more times and it did come down as he woke up a bit more. He decided he might need to have a bowel movement, which sometimes helps. He was a bit constipated (don't tell him I told you this!), but got a bit out and felt better. Temp was down to a normal range, too. He ate well and watched some tablet. 

When I peeked in at 11 am from the kitchen he had fallen asleep. This was unusual and made me worry a bit. Normally if he has a nap it's late afternoon after he's used up his abundant energy. 

So I let him sleep about an hour and a half, checking him regularly and feeling his head for fever. When he woke, his temp was normal, he was hungry and he was bouncing around full of energy as usual. 

Had a lovely visit from friend and fellow School Council member, Siobhan. I also took his temp randomly throughout the afternoon and it was fine. He and Abby had piano lessons when she got home from school and he seemed okay.

He was out of sorts after that and wanting to fight with me over a disappointment he felt I had caused him by not being able to get him something he wanted. I was annoyed and didn't take his criticism very well considering all I am doing to keep him alive daily.

Around dinner I felt his head and it felt warm again, so took his temp and sure enough it was 38.6. Waited a few minutes and took it again...38.4. Time to call the oncologist on call at CHEO. He was familiar with Ollie's case and recommended bringing him in because his neutrphils were low at only 0.5 on Tuesday, so his ability to fight infections was also low. 

Ollie was upset and tried to hide in his room. Abby was sad and trying to calm Ollie. I was stressed and trying to gather things as well as calm Ollie. I told Mario I needed him to come if Ollie was going to be difficult and asked him to call a friend to be with Abby (sadly she and I were supposed to go out for drinks tonight, so this was way less fun for both of us). He was stressed (although he would never admit it) and agitated so naturally could not find her phone number. I got mad and said just let me do everything then! Not our finest hour. 

Why do I share this unflattering story? Because it's real and this is really what having a critically ill child is like at times. We all stress and act in ways we wouldn't normally and sometimes forget to support each other, instead looking to make each other feel worse. Except Abby. She got full marks tonight for trying to make things better. Let the children lead you...

Jenn got called and was on her way to be with Abby. Abby got hugged and promised we would keep her updated. So off to CHEO we went. Fortunately, we've learned to get over disagreements fairly quickly in our family, so we focused on just taking care of him. 

After bypassing the line at CHEO (oncology patients have their privileges), they triaged us into the same isolation room in Emerg as last time - almost a month after last time, too. His fever was 38.7. 

Blood cultures were taken (there was crying), complete check up done and antibiotics were started right away. It was obvious that we were likely being admitted. So we waited. Ollie slept a bit, woke to be prodded some more, was upset and indignant when they shoved a swab up his nostrils to test for flu and respiratory viruses, then ate a banana popsicle.

A little while later another doctor confirmed that we were staying at least 48 hours and admissions came over with the paperwork.

We'd tried to prepare Ollie for this likelihood. We had prayed on the ride over that he wouldn't have to stay, but if he did, we asked for patience and grace to accept it calmly. Fortunately he did. I told him later how proud I was that he didn't freak out. 

We got a "luxury" room on 4 North again, so he was happy about that. Daddy went home to relieve poor Aunt Jenna who stayed with Abby until after midnight. We had a new nurse Ollie hadn't met yet, so he regaled her with details about Beyblades and what they can do. She listened intently while doing his vitals and promised to let him show her how they worked tomorrow. 

I finally got him settled down and now am ready for sleep myself. We're okay, but sad to be in before chemo was supposed to start again on Tuesday. I have no idea if they'll have us stay and maybe start chemo a day or two earlier than planned, send us home for a day or two only to come back or what. I'll share when we know.

Viruses suck.