Chimerism and Battles with Central Line #4

Ollie has been a bit more tired the last few days. It made sense to me that his body is working so hard to use those new stem cells that he'd be physically tired. I can remember vividly carrying him when pregnant and feeling so exhausted at times because my body was working so hard to build a beautiful baby boy. I can only imagine that his fatigue felt something like that. 

He is trying solid foods, but it's slow going as he still has some nausea, is fearful of throwing up more and his taste buds are still off from chemo, radiation and all of the drugs he's been taking. We keep encouraging and trying. 

We've tried to get him interested in activities this week, but most of the time he just wants to rest and watch tv. Well, listen really...thank goodness for shows with descriptive video as I never realized how much the pictures tell the story and how much is missed in dialogue alone. As an aside we had to request an original remote to the tv (the hospital uses a clean remote with recessed buttons so easier to sanitize) to be able to turn on the SAP feature with the audio description. These are the little things that that make a big difference to children with special needs that one rarely thinks about until you're dealing with it yourself.

It boggles my mind sometimes that in the span of ten months our kid went from seemingly healthy to critically ill to special needs. Sometimes my head spins when I think about all of the advocacy roles I can and need to play now. Caregiver, cancer parent, parent to a blind child, parent of a stem cell donor AND a recipient. 

I've always been supportive of various youth charities, with Big Brothers Big Sisters Ottawa (BBBSO) being nearest and dearest to our hearts as both Mario and I were Bigs. Now I know I'll need to expand my support to others that have and continue to help us so much with cancer and blindness. 

When I was President of the BBBSO Board the Executive Director and I used to wish that we didn't have to compete with the likes of CHEO for fundraising dollars. Ironic that I am now on this side of it, needing this support. I really need to win the lottery and help them all the way I really want to!

Ollie and I ended up intercepting a call to Abby from her best friend Francesca (I still monitor all of Abby's social media activity for safety) by accident the other day. Ollie was delighted to talk to Franny who kindly and promptly suggested a three way online chat with Abby. He was so happy to be part of the conversation and the girls were lovely in including him and helping him to make silly plans to open a pizzeria with them in future (sorry Gabriel Pizza! Don't mean to compete! 😜). 

It was a fun make believe activity that took his mind off of hospital stuff and reminded me that he's not able to play with friends right now and is missing that interaction. I've offered to connect him with his friends online, but he's been too tired to do it lately. 

We've finally worked out a plan with our friends who are taking Abby when school starts to have her and their daughter do online learning together for the first two months. We're basically bubbling our families together for socialization for the girls so neither is deprived of that while staying safe at home. That keeps their immuno-compromised family (both mom and dad are not working outside of the home) safe and ours, too. It will also make it easier when we come back from Toronto to reintegrate Abby back home with Ollie without fear that she is exposing him to any viruses as we go into the flu season and are still battling COVID. We'll see how things go in school those first months and decide whether we continue this way or have the girls physically go to school in November or later. 

It's a relief to have positive plans to get and keep both of our children well this fall and we are grateful to our dear friends and all who offered expert advice on this front. 

Thursday night I stayed with Abby at the condo as usual. I had a lovely chat with dear friend Charity who called to say how glad she was that things were going well for us. Charity is also our youth minister and I have worked with her on many spiritual endeavors over the last few years. She was one of the first people I told when I suspected Ollie had cancer and we were waiting for biopsy results. Then and now her faith and kindness have bolstered my belief that everything would be okay. 

She asked me at what point do we feel we've really beaten this and get to live without fear. My answer was never and now all at the same time. Never in that I know from other families who have a cancer survivor among them that the fear never really leaves you. It's always possible for your survivor to relapse or get a secondary cancer. When you are told the risks of chemo and radiation, they tell you that the treatment may later cause another cancer. Unbelievable. But you really don't have a choice and learn to accept whatever risks they throw at you, because the treatments are the only way to save the person you love. 

We also NEED to live NOW no matter what else may be thrown at us in future. We tell Ollie that he knows better than anyone that life can be unfair and unpredictable. That there will be suffering in your life that you don't anticipate, so you need to appreciate every moment and do your best to be happy and enjoy life. We also tell him not everyone gets a chance at rebirth the way that he has, so he can't waste it.

So I put on my new "it's going to be okay" mask on Friday morning and went back to the hospital. 

Ollie had a visit from A. Lebut (pronounced A. Leboo, but I have been informed that he is named for a hockey goal in French! 😄) and they played Bop It and other games that they made up for a bit in the afternoon. I was asked by a student nurse to do a family experience interview at the same time, so I was happy to be able to tell her what I feel is important, what Sick Kids does well and what they could do better from the parent perspective.

Friday evening before he left the hospital, one of Ollie's doctors came for a last visit (we'd already seen him twice that day) to share with us the news about his first chimerism test result. 

Chimerism testing is used to monitor the success of stem cell transplantation by evaluating the ratio of donor and recipient DNA in the recipient's blood or bone marrow. He had been tested a few days ago and we were eagerly awaiting the results. The doctor had told me that at this point they would expect a fairly high number maybe as high as 90%. On Thursday night Abby had predicted that her cells would be overachievers. LOL

So the doctor came in, almost vibrating with excitement (he's a Fellow, so it may have been his first time delivering such news). He asked Ollie to guess what his result was out of 100%. Ollie laughed and said, "100%!". The doctor started laughing and said he didn't expect him to guess that and he was actually right!!! Abby's stem cells and DNA have totally taken over his bone marrow already!

Ollie and I were excited and called Daddy and Abby. Abby was so happy at first that she was giddy, and then she cried. Her first tears of joy. Following in her mama's often watery footsteps. Mario was visibly shaken and asked a million questions. He was in disbelief. Then he kept wiping his eyes. I really wish Ollie could have actually seen their reaction and not just heard it.

Fast forward to 3 am Saturday morning. Fever. And worse yet, when they tried to take blood for blood cultures, his PICC line wasn't working. It had been finicky for days. They tried to clean it out with Alteplase (this had worked a few days ago and several times at CHEO). This time it didn't work. At 5 am they told me he'd need to have an x-ray.

They brought their portable x-ray machine to his room and after a short battle we managed to coax him into cooperating.

The line had somehow shifted and was no longer going into his heart, so no blood return. They would have to fix or replace it under general anesthesia. They could still use it as an IV in.the meantime though, so they reconnected his lines at about 7 am and tried to catch up on the several meds he'd missed including his very important anti-rejection drugs, Methylphenidate (MMF) and Tacrolimus.

Because he had the fever, they still needed to get blood, so an IV would be needed. The Vein Access Team (VAT) was called. Ollie was a complete bear given how many times he'd been woken up unpleasantly that morning. He refused to cooperate no matter what we did. The VAT team talked to the doctors and left. A while later the doctors came by and told me there really was no other choice. They wouldn't take him into the operating room to fix the PICC until they ruled out an infection because they didn't want to infect the line and have to take it out (again...as same hastened at CHEO on March and we had to take PICC #2 or due to infection). Once they got blood it would take 2-3 days after to see if the cultures grew any bacteria. 

He still needs his central line for a few months for regular bloodwork and in case he was to have any complications like Graft Versus Host Disease which can still happen after engraftment.

So the VAT team came back. Again no cooperation. They left and promised to come back in an hour. I called Abby and Mario and all three of us worked on him, reminding him that he's succeeding and can't sabotage that when we can see the light at the end of the tunnel. He was not happy, but eventually agreed to do it.

The VAT team came a third time and this time with a little help from Atavan and lots of patience from the two VAT team members, his nurse and I, we got the ultrasounds of his veins and the insertion of the IV in his chosen place done. 

As usual, we progress and still encounter little bumps in the road as we move forward. On a final positive note, this afternoon Ollie's white blood cell count was 8.1 (normal is between 4 and 11), his platelets were way up at 184 (150 to 450 per microlitre is normal) and his neutrophils skyrocketed to 6.7 (yesterday they were 2.26, so way above neutropenic level.of 0.5). So his immune system is functioning like he is a healthy, normal boy. He just happens to have his sister's stem cells and DNA making that happen! We're so grateful that he let her win this battle and that our determined little overachiever' s cells got it done. 

If he does not have infection, starts eating real food this coming week and can take his meds orally again, he can come back to the condo! We're hoping this can happen before Abby leaves to go back to Ottawa. Stay tuned...

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!

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!

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. 

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. 

Intuition, Fever and Fear

This is post number two because today's events warranted their own post.

Last night everything was fine. Ollie went to bed snuggling with me in his new twin over double bunk bed. He seemed warm to me, but did not have a fever. As I lay with him and he fell asleep he was restless and very sweaty. I got up and prepared Abby's lunch and did a few things, going back to check on him a few times. I told Mario I was going to bed and felt I should sleep with him as I fear fever in the night right now and had a sense something was off. 

Fever requires immediately going to CHEO Emergency because his immune system is shot since the chemo and he is now what they call neutropenic. This means that his white blood cells (WBC on a blood test) are very low and any illness is dangerous because the body has no ability to fight them off. 

So my mother's intuition told me to sleep with him and several times in the night I woke to a very sweaty kid and took his temperature. Each time it was normal, but I knew something was not right. When we woke about 7:30 to get ready to go to CHEO for his usual Friday PICC dressing change, he felt warm, so I took it again and it was a bit high. I waited a few minutes until he was up and had cooled down from the warm covers and took it again. Higher again this time and definitely a fever. So plans changed rapidly. I called our Oncology Coordinator to let her know and she told me to come to Emerg and she'd alert them.

I sent Abby and Mario off to their regular days, promising to let them know any news. Ollie was otherwise well and cooperated to get to CHEO, walking himself into Emerg. Once there we were triaged immediately and shown into an isolation room to minimize our exposure to anything else. That's the fastest we have ever been triaged at CHEO. At least cancer patients get VIP emergency treatment. LOL

We were quickly visited by nurses and a doctor who checked him all over for any sources of infection (nothing obvious). Everyone was gowned and masked as a precaution. Bloodwork was drawn rapidly, a urine sample taken, a team came down to change his PICC dressing, a second doctor from oncology arrived to do more checks. IV's of antibiotics and fluids were started. 

The doctor told me he'd have to be admitted for 48 hours for meds and observation. Admissions arrived and had me sign forms to admit him (again so glad to be overinsured and always paid for the full hospital coverage).

I guess I'm getting used to all of this as I found it all comforting because it reminded me we were in the best place for him to be safe, whereas weeks ago it would have elevated my stress levels. 

What did stress me out was having to tell him we'd have to be admitted again. To say he took it badly is an understatement. Sadness, anger and complete defiance ensued. There was yelling, wall punching and absolute insistence that he was going home because round 2 of chemo wasn't starting until December 30. Despite everything I could not calm him by myself and it took me, two nurses and a child life specialist to sooth him and bring him down to a manageable level. 

One of the ways they did this was by talking about what made him angry and suggesting we make a punching pillow and draw a target and write those words on it. 

Luckily, one of the nurses who came by was also our POGO Interlink Nurse, Graham who had stopped by our place on Wednesday to help with paperwork and had bonded with Ollie over Beyblades. Graham had also gone into the school earlier this week to teach his and Abby's classes about lymphoma, so we recognize that he has done a lot for our family this week. So Graham also engaged Ollie in a discussion about Beyblades, taking his mind off the fact that he was being admitted. 

The thing about Ollie is he is passionate like Daddy, but pragmatic like Mommy. So after the room had cleared, he and I had a good chat about how powerful his brain is and if we prepare for the worst and hope for the best things generally turn out fine and we aren't disappointed constantly. He asked me what the worst was and I said we'd be in hospital a few days, but maybe less and we could still hopefully make it home for Christmas. Then my bright, sweet pragmatic boy said he had done eleven days already and two days wasn't bad and we could do it. I pray that it's only two days and I don't have to disappoint him and ruin the lesson.

So we finally got a bed on 4 North after lunch and with a new positive attitude, we arrived in our new room. To his delight it's a private room (we were alone in a double last time) and has extra amenities like our own mini-fridge (please send wine and cheese...LOL), a PS4 and TV for it in the room (we borrowed a communal one from the playroom last time, but apparently these were donated for isolation rooms) and the crowning glory...his own tub (he had to have a bath down the hall last time and found that unacceptable...imagine having a bathroom in your room with no bathtub!)! He exclaimed that this really was at last more like a hotel.

No sooner had we settled in then a special visitor arrived to bring some presents and spread some Christmas cheer. See below...

Got to meet Brady from the Ottawa Senators who was even a good sport when he learned the Sens are Ollie's number 2 team and the Leafs are his number 1 like Daddy. 

Now Ollie is napping and I am drinking a coffee from Keurig pods that some Christmas angel left in the kitchenette for everyone and thanking God for them and the fact that there is even still some sugar and cream that I left behind when we left here not quite two weeks ago.

None of this is what we planned, but as a strategic planner, I know the importance of an "evergreen" plan that is constantly being adapted to accommodate changes and also of always having a Plan B and sometimes even a Plan C. So we'll hunker down and watch our new subscription to Disney+ this weekend and pray that by Monday we are home and cosy again. 

Sending you all love and prayers for a lovely weekend before Christmas. Please be safe, be good to each other and remember that the perfect outfits, food, gifts and decor don't matter this or any Christmas. It's being wherever you are with people you love and enjoying time together.