Together, Fed and Funny

We're all "home" (at least our temporary one in Toronto) together again! Happy to report that it was the shortest hospital stay he's had yet, at only 48 hours long. 

Yesterday while Ollie was killing time waiting to be released, Abby had her third of five injections of the G-CSF. 

She's learning like her brother that you spend a lot of time waiting in hospitals.Yesterday it took two hours because we had to wait so long for the injection to be sent up from the pharmacy. 

The nurses are super nice at Sick Kids and the atmosphere in clinic this weekend was pretty relaxed considering we're in the middle of a pandemic. On the weekends the clinic changes locations so we've now had an opportunity to see 8A, 8B and 8D in action, too. 8B is the Bone Marrow Transplant Unit where we'll be for 6-8 weeks after transplant. 8A is where Ollie was this weekend for oncology.

Finally the injection arrived, we froze Abby's arm and got the job done quickly with no fuss. For a girl who was afraid of needles, Abby has now had 7 pokes for her brother with 3 more to go and has really conquered this fear.

She has had some significant back and hip bone pain as well as a major headache yesterday, so we know that it's working and pushing those stem cells into her blood stream. We've managed the pain with Tylenol and the heated magic bag (thanks again, Toni/Mrs. H as it's the gift that keeps on giving!). She has shown a shocking ability to handle the pain gracefully considering she's always been the drama queen who wailed every time she got a little bump when she was younger. My children constantly surprise me with their adaptability and acceptance of what must be done to heal Ollie. 

After her injection yesterday, Mario and I switched, so he went home with Abby to rest. The deal was as long as he didn't get another fever (hadn't had one in more than 24 hours) and no infections grew in the blood cultures by 11 pm last night, he could go home. Generally I would have preferred that we stay overnight and leave in the morning, but Mario and Ollie were begging for him to be home, so I went along with it. 

Ollie was anxious to go home all day. We tried to pass the time being silly.

And telling jokes, which I am notoriously bad at because I always mess up the punch line, but that makes Ollie laugh anyways.

He did get out shortly after 11 pm last night and we all just crashed when we got in and slept in this morning.

I took Abby to the hospital today for her fourth injection without incident and then she and I went in search of a real grocery store nearby since we still cannot get a delivery or click and collect slot until next Sunday. As it happens there's a Metro that did not have a line up to get in and is almost across the street in College Park on the other  side of the park.

So we put our masks and gloves on, did our seek and destroy shopping mission and got back to the condo in no time. Our general practice is to remove all clothes after getting home from the hospital, wash hands, put clean clothes on and immediately wash the ones we took off. I also disinfect all groceries and remove anything we can from outside packages and immediately take them to the refuse room. It is a lot of work, but we can't take any chances.

Ollie was content to be home with Daddy playing Beyblades and he had a visit from the home care nurse to show us how to flush and hepronize his new broviac central line in his chest. Just like the PICC, we are learning to do it ourselves so we don't have to rely on home care and can reduce exposure to the outside world that way.

One terrific by-product of Ollie having cancer and Abby being his donor as well as the pandemic that keeps us away from friends and family is that the kids have had to rely on each other for support and companionship. They now have a real appreciation of each other and know how lucky they are to have each other.

She takes care of him as she did when he was just an infant before they learned to fight. 

We put fuzzy dots on the black connect 4 pieces today and she taught him how to play even though he can't see. This way he can differentiate between the black and red pieces.

These two also gang up on me to get what they want now using the sad little sick kid eyes.

And laugh when I call them on it.

Ultimately we're doing well, happy together and hoping for a good week of stem cell collection from Abby on Tuesday and mainly rest for Ollie until late next week when his radiation in prep for his stem cell transplant begins. 

A friend of faith pointed out that Ollie's transplant is now scheduled to happen on April 16, which is the feast of St. Bernadette who is the patron saint of the ill. Her name means, "brave as a bear", which we agreed is perfect for Ollie.

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!

Recharging and Selflessness

Tuesday and Wednesday were great days! Relaxed, with no place to be, we had the chance to finally breathe a bit and enjoy just being, without stress. 

Tuesday we just had a quiet day, enjoying being together and not taking for granted the precious moments of being a family after almost 2 months apart.

Ollie took a tour of the condo to get familiar with it and get some exercise. We watched tv and rested.

Wednesday, Ollie felt really well and even got up on his own and started exploring. 

It gave me a bit of a heart attack since the kid had barely been out of bed the last 2 months, but he had lots of strength and energy and wanted to practice the skills that the staff from the Canadian National Institute for the Blind (CNIB) had shown/explained to us in recent weeks when we met with them. When he is motivated to do something, nothing can stop him.

One of the things they told us to practice was recognizing tactile differences as Ollie needs to use his hands as his eyes now and understand the differences between how things feel to be ready to learn Braille. We've been practicing this matching textile game, but he wasn't happy about it.

He did want to help me make pancakes yesterday, so he walked himself into the kitchen and I sat him down so he could help. 

Then he helped Daddy make scrambled eggs.

And we all sat down to the first real family meal we've had in almost 2 months. 

He was pretty thrilled with himself and so were we. Mario was like a new parent excitedly watching his child take his first steps. It felt like that again and Ollie's pride in being able to do it made his face so radiant that I wish I had gotten that photo. 

He was pretty tuckered out after this and had a rest.

It's pretty great being so close to the hospital and saves us major time and gives us peace of mind that we can be there in mere minutes. Here is the view from our balcony. The building with the green roof is Sick Kids Hospital.

Thursday was a big day in that Ollie had a meeting with his new oncologist, Dr. Alexander, who is the Canadian expert in pediatric Anaplastic Large Cell Lymphoma and one of the key people that our CHEO team had consulted with when they discovered that Ollie had it in his cerebral spinal fluid in January. She was so lovely and kind. She really talked to Ollie and tried to understand his needs, just like our CHEO oncologists, Dr. Abbott and Dr. Pinto. 

As a side note, we said goodbye to our CHEO oncology team the week before arriving in Toronto. Dr. Abbott was going on mat leave and gave me the biggest hug (despite the COVID situation that had just started to heat up in Ottawa) and promised me we'd be in good hands at Sick Kids. Dr. Pinto had done same and encouraged me to send her e-mails on progress and told me she'd look forward to seeing us when we were back. These women have held my hope and faith in their hands for 6 months and handled it so beautifully. It's not just a job, but a true calling and I can already tell that Dr. Alexander is their kindred spirit in this.

Ollie also had a lumbar puncture with intrathecal chemo again Thursday. We were put in a very old school hospital room in 8D in the Day Hospital. I felt like (tv and computer aside) I was in a 1970s/early 1980s hospital. Ollie was insistent that he was not lying in the bed because there were germs everywhere right now. COVID is definitely leaving an impression on him. I had to promise him when we come to stay for his stem cell transplant, we'd bring our own sheets.

At Sick Kids they do their lumbar and bone marrow punctures in a dedicated room, whereas at CHEO they're generally done in the general procedure/OR rooms. 

At CHEO no one ever liked to see Ollie in his Toronto Maple Leafs pajamas, butt here they were psyched to see it! 

The procedure took only about 20 minutes and he was taken to recovery right on the oncology floor. The nurses were shocked by how quickly he woke and wanted his cheese pizza, which I had run down to get while he was having his LP done. 

He wanted Daddy in recovery, so we switched kids since it was time for Abby to go and have her first of 5 injections of the G-CSF to stimulate her production of stem cells to push them into her blood stream for collection for her brother on Tuesday. Ollie went home to the condo with Daddy after recovery and ate more pizza! The steroid he is on continues to make him eat like a machine.

And the boys needed a nap after so much excitement.

Meanwhile, I took our stem cell donating warrior for her injection. We hung out in the Sears Oncology Clinic and ate some lunch while we waited. She's now addicted to kale smoothie!

Abby was nervous about the needle, but Nurse Janice was super kind and helped her to stay calm. She advised us that a bag of ice on the injection site before is the best for reducing the pain of the G-CSF as well as massaging the area around it during the injection. 

So Abby sat on my lap again and got her injection while talking to two nurses about TicToc and middle school choices. No fuss, no crying. Done quickly with just a bit of stinging. The nurses gushed at what an amazing thing she was doing for her brother and it made her feel so great. 

Afterwards given it was her first injection, she had to stick around and be monitored for an hour in case of reactions to the medicine. She was put in the same exact room as Ollie has been in earlier in the day. 

I had a few moments of feeling overwhelmed and in awe of what my beautiful and kind girl was doing for her brother and all of us. I've always said that I honestly don't care what my children grow up to be as long as they are kind. I can't imagine she'll be more so than now. She honestly could do nothing else with her life and I'd still feel like she'd done the most worthwhile thing ever (of course, I know my motivated and bright girl will still go on to do many incredible things, but this one will be hard to top). Naturally Nurse Janice came in the room to bring cookies as I was wiping away tears and insisted Abby share some with her brave mama, too. 

Of course, Llama Llama Blue Pajamas the Third had to be present.

Nurse Cathy finally came to check her vitals and set us free. 

So Abby did it! Not only is she conquering her fear of needles and blood, but she's also she brave to be doing this in the middle of a pandemic for her brother. We are so very proud of her!

She'll now get the injection every day until Tuesday when they'll harvest her stem cells. She may get achy and have bone pain from the injection. Possibly headaches or flu-like symptoms as definitely fatigue. We watched a helpful video with her last week to see what that part will look like and you might like it, too. She has vowed to create her own perpheral stem cell transplant video for kids and to post it when done, so we'll share it.

The day is not yet done as I post this, but I'll share the other development in another post later today!