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!

Pizza and donut karma

We've mentioned Ollie's cravings for Gabriel's Pizza several times in this blog. Ollie is a supremely loyal guy and when he loves something, nothing else will do. On our last blog post I mentioned that he was missing home and everything about it including Gabriel's and Suzy Q Doughnuts. 

We've been regular Friday night customers of Gabriel's for more than 15 years. The kids have literally grown up on it and their regular delivery guy in our area was always so kind to Ollie who was always excited to see "the pizza man". He last saw him a few months ago when we all happened to be home together in between rounds of chemo. When he saw Ollie without hair and clearly ill his eyes and face when he looked at me became so sad, but he was still so kind to Ollie and I as always. This is a caring company and the fact that we've had the same delivery guy for years is also impressive. 

One of the neat things about writing this blog is how many of my friends tell me that their whole family is reading it together and following along. My buddy Neil and his wife Meg read the blog yesterday. Meg wanted to do something to help Ollie so she sweetly tweeted the following: 

And Gabriel Pizza replied: 

Gabriel's team then messaged me directly and told me they'd like to help and asked if their colleague could contact me to arrange delivery. Incredible. 

Ray who is a VP at Gabriel's head office contacted me last night and asked if he could drive some to us in Toronto today! I was bowled over. He asked what our favourites were and suggested he could bring some fresh and some half cooked to be frozen and cooked when Ollie is craving one. He also asked me who Ollie' s team was at Sick Kids so that they could be treated too as Gabriel's has been doing this at hospitals in Ottawa the last few weeks to slow their appreciation to health care workers. 

Ray drove to Kingston this morning and picked up the pizzas at their location there taking extra care to keep them as warm as possible. He arrived mid-afternoon and I went down to meet him. He brought us a ton of pizza and some cool Gabriel's and Ottawa 67's swag for the kids!

Mario and I were in tears at their kindness. Ollie was napping upstairs and Abby was sitting with him while we quickly received the gifts at a respectable social distance from Ray who was so careful, wearing a mask and gloves. We wanted to hug him, but darn COVID! We then thanked him profusely and pointed him in the direction of Sick Kids for his next delivery for the good folks in the Sears Oncology Clinic there. 

Abby loved the new swag and quickly modeled it. 

Ollie woke hungry as usual. He seemed unsurprised that we had a ton of Gabriel's Pizza. He said, "I told you they could deliver here." Ah - the unwavering faith of a 7 year old that everything is so simple! 😝

He really liked his new Gabriel's t-shirt, too.

People are so kind. In the past week friends Micheline and Maria also sent us another yummy pizza in hopes of finding a local Gabriel's equivalent from Pizza Iolo. They definitely get an honourable mention. 

My funny and kind university pal, Nathalie used to live here and sent us some donuts that she felt were close to Suzy Q's from local bakery, Dipped. Ollie ate it, but mumbled that it wasn't Suzy Q's. Mario felt they were better than Suzy Q's (don't tell them!). They were delicious and a definite contender.

Abby liked them, too! 

We know Suzy Q's is busy moving and expanding to serve more folks in Ottawa and we can't wait to see their new places. Plus, we've already had amazing kindness from them. I shared this story on my Facebook page in November 2016:

So Abby and I were on the way home tonight from picking up and dropping off donated items for the Syrian family that our school/church had sponsored...on a whim I thought we should stop in our neighborhood to pick up some donuts to enjoy as part of daddy's birthday celebrations that week. 

As we parked the car and started walking towards the site, a man carrying a box of donuts asked if we were going to Suzy Q's. We said yes and he said they had just closed. :-( "But take mine!", he says. I protested saying that is so kind but I can't. He said he can get more anytime and insisted. So I asked if I could pay him and he protested and said no way, we should just take them. "But I can't take your donuts for free!", I said. "Sure you can, my name is Mark and I own the place and I love giving free donuts!" Got home and they were so delicious! As Abby said, this is "donut karma" for helping others! LOL 

So you see, we understand so well that doing what feels good and right is easy and that kindness begets kindness. We are so grateful to everyone for being kind to us and trying to spark joy in our lives during these difficult times. To everyone reading this, keep doing kind things for others even if it's just sending positivity or prayers their way. It always helps you and them feel better.

An Ode to My Husband/Their Father

My very first date with Mario I had the overwhelming feeling that he'd be a terrific father. That may seem a strange thing to think about on a first date, but it's one of the many things that attracted me to him. Another was the fact that our first date was 8.5 hours long and we never ran out of things to talk about. Anyone who knows me knows I talk a LOT, but to find someone who could volley the conversation ball back and forth with me for that long was impressive and made me think we could grow old together and never run out of things to talk about. 

The fact that he was a Big Brother (remember I was a former Big Sister) and loved kids was icing on the cake. While our romance wasn't always easy in the beginning, I knew he was my partner and we would both work hard to make a good life together if we could learn to compromise. Thankfully we did.

When Abby was born he took to fatherhood so naturally. Even though he'd joked he'd never change diapers, he did and quickly got better at that and swaddling than I ever was. When I had breastfeeding issues at first and baby blues, he was an amazing partner and coach, surprising me with his sensitivity and patience with us both. He could not have been a more loving daddy and husband and I was so very grateful that he was ours.

When Abby was 6 months old I went back to work and he took the second six months off to be with her. As much as it broke my heart to leave her, it was one of the best parenting decisions we've made. Mario was a full partner in childrearing and has always understood how hard, yet how rewarding it is. 

As much as he can be impatient with adults when annoyed, he has incredible patience with our children. From cooking with them to playing with them he manages to make everything fun. Despite his love of fun, he's a disciplinarian and although we've sometimes struggled to find a balance between no and negotiating to arrive at solutions together, our kids are generally kind, smart and mostly well-behaved little humans. I know that there's not a day that goes by that Mario isn't grateful to be their dad.

Mario had a pretty rough childhood himself. When he was 4 he survived a car accident in which his parents and older sister died in Colombia. He came to Canada to live with his mother's sister and her husband in part for our superior medical care since he had burns on his legs and arms and had to have more than a dozen skin grafts over the years of his childhood. He is a survivor and a warrior. And now his son is, too. 

When we learned of Ollie' s diagnosis, Mario was stoic. He was confident that everything was going to be okay and our son would have the best medical attention and get well. No question, no need for hysterics. 

I was confident of this, too, but much less strong and totally unafraid to show the kids my sorrow that we had to deal with this. Since I am an emotional being and cry when I'm happy, sad and mad, the kids took this into stride. 

Although I know the idea of being around hospitals with sick children has always stressed him out (who doesn't get stressed there, but he has more reason to be than most), he's always generally sucked it up to be there the few times that our kids had to go to CHEO over the years. When we discussed who would take a leave of absence from their job to care for Ollie, Mario was willing to do it, but we felt it best that it be me. I knew I wouldn't be able to focus on work when I needed to be with my baby. 

Despite that, Mario has been present and involved every step of the way, thanks in large part to his wonderfully understanding and flexible employer. Naturally, I've spent more time in hospital with Ollie over the last 6 months, but Mario has traded me off many days and nights to give him time with Ollie, me a break from the hospital and for me to have time with our daughter, too.

Navigating the world of cancer while parenting together must be one of the ultimate tests of a relationship. Luckily for us, "We fight as one" (thanks again, Frank) and have never wavered in our common goal of getting Ollie well and supporting our family through what will likely be our greatest challenge. Honestly, I've known of marriages that have collapsed because of a sick child. For us thus far, our mutual admiration has only grown as we see how committed the other is to loving our family through this...as we witness the incredible lengths that the other will go to for our children. Most of the time we agree on the next right steps to take with Ollie and when we don't we've been able to find a compromise we can both live with that won't compromise Ollie' s care.

Mario has said recently to Ollie that he is his best friend. And right now, so isolated from all of his peers because of this unfairness, Ollie needs that. Mario also needs that when it's so hard to explain to those outside how all of this affects you daily. Mario is somehow able to be both friend and parent to Ollie in a way that I have not mastered. It's very touching as before all of this, Ollie often gravitated to my softer way of dealing with him and from time to time found Daddy's sometimes gruff demeanor tricky to decipher. Now he often wants daddy to do things for him (he seems to subconsciously feel that I am the mean mama who makes him fight cancer and do all of the hard things).

So this disease has brought us all closer in so many unusual ways. As a parent of a sick kid you are the parent, nurse, advocate, psychologist, coach, healer, miracle worker, physiotherapist, prison guard and enemy of fun. You have to do so many unimaginable things to get your child to take the medicine, get the pokes, do the exercises and keep going no matter what. 

In a crazy way, I have to thank COVID-19 as it has caused us all to be home together through all of this and allowed Mario to be even more involved in the day to day care of Ollie.

The last few days and especially today have been really hard. Ollie has been really depressed and bugged by everything. He hates his broviac (the central line in his chest) and wants it taken out, refusing to understand that he needs it for his stem cell transplant. He says, "I can't! I'm blind!" to things he's been doing since he went blind almost 3 months ago. He's begging to go home or for us to order a Gabriel's green olive pizza or Suzy Q donuts to be delivered here. Again, he is adamant it's possible to get some here no matter what. We keep telling him if he'd only apply that determination to fighting the cancer instead, we'd beat it in no time! Kind friends have been trying to source pizza and donuts here that are equivalent or even cooking up a plan to somehow get them here. We are grateful that people love him so much that they'd do almost anything to make him smile again.

Today Mario and I spent the afternoon trying to convince Ollie of why he should live when he was adamant he wanted to stop it all. He was mad at us for forcing him to have his line cleaned (I had to hold him so he wouldn't rip out his line while Mario flushed and hepronized). We reminded him of how much he's already overcome and how strong he is and when he doesn't feel strong the three of us (with Abby) will continue to be strong for him. I used to joke that I'd make my children into good people even if it killed me, now I seriously say I'll get him well even if it kills me. Through it all, Mario is there with me - talking, teasing, cajoling, begging, insisting, and even crying to get Ollie through this. 

If that isn't partnership, I don't know what is. I'm not usually one to gush and Mario and I are more likely to tease each other than to publicly admire each other, but I cannot express enough how much I love my husband and am so thankful to have chosen him to be my partner and the father of my children. This is the stuff of real hard life and when you're in the trenches you want to know that your trenchmate has your back in every way.

Despite the challenges of the last few days (Abby's been moody and depressed, missing friends, too), the universe has sent us blessings like the Canadian Blood Services story, connections from other moms who have shared survivor stories (including one in Australia whose son lost vision like Ollie and got it back when the lymphoma was all gone), and an introduction to a young hematology doctor who started a Stem Cell Club to hold stem cell swabbing events on campuses across Canada when he was a first year Med Student and wants to share our story as well to encourage virtual swabbing since they can't hold public events right now. 

Honestly these are all examples of the best of humanity and signs that even when things feel difficult and negative, there is hope. In fact two of the cancer survivors' mamas told me that hope is the most important tool in our toolbox or weapon in our arsenal. So we go into a week of tests to see if the Ceritinib is working, starting with an MRI tomorrow and clinging desperately to our sanity and our hope. 

My perspective (by Abby)

My mom says writing a blog post is a great way to control your emotions. I have a lot of big emotions and feelings about what's going on with Ollie right now. I remember the day I found the bump; Ollie and I were brushing our teeth in our bathroom, when I noticed a small little red spot that seemed to be blistering on Ollie's neck. After I had found the bump, I told my parents that I found a red spot on Ollie's neck that appeared to be just a sunburn. The "sunburn" kept getting bigger and bigger and that's when we knew that it wasn't a sunburn. Before arriving at the heart breaking diagnosis, he visited countless doctors who misdiagnosed the bump as something minor, like a bacterial infection. 

When one of the doctors suggested they go for tests at CHEO, that's when I started to really worry about his situation. In school when it was time for intentions during prayer, my intention was always that Ollie's bump wouldn't be anything major. The whole time when I was thinking what the bump could be, cancer was always at the top of the list. I also remember the day we found out the diagnosis, my mom had told me that we were going to find out the results of all the tests Ollie had done at CHEO and she also said that it was likely that it would be the day that we found out the diagnosis. My dad was driving me to school, when we were in the car I said "Dad, do you think Ollie might have cancer?" my dad said, "Abby please don't say that."

I had this gut wrenching feeling that everything was not okay at school that day. I remember that I was in science class when my teacher got a call on the intercom saying that my mom was going to pick me up. I went to the office to find my mom there. Everything was quiet. I came in and she was almost finished talking to my principal and some teachers. When we went to the car, I asked my mom if she got the results back and she sighed. Then she drove to a quiet street away from the school and parked. She told me what the doctors said and about the diagnosis. When she was talking to me all I could hear were the loud thoughts inside my head about how everything wasn't going to be the same. 

When we got home Ollie was sitting there looking kind of sad. I suggested we play foosball. We played foosball and I let him win. How I wish things were still like that. 

The first two rounds of chemo went by quickly. After his second round of chemo he was home for a brief while before he spiked a high fever. He left to go back to the hospital and after a week there we got the devastating news that it was in his brain and spinal cord. He lost his sight and most of his happiness. The two months that Ollie was in the hospital felt like years. 

I had strep throat during that time so I didn't get to see Ollie and that just killed me. He was also in isolation a lot and couldn't have visitors much. After two more rounds of really tough chemo, he finally came home and two days later he  had an infection and was back in the hospital for 16 days. He then came home for 24 hours and we left for Toronto to get him a stem cell transplant. I'll write another blog post soon about my donation. 

But before he could get my stem cells, he started getting bad headaches and after tests, they found cancer in his brain again. They said the only way to put him back in remission was to take these huge pills. When we found out that if he didn't take the pills over time he would die, I felt the same way as I did when I found out he first had cancer. I bawled my eyes out and prayed as hard as I could. I sent him a video when he was in the hospital of reasons why he should live. To my relief, he took the pills, no problem. 

Curveball after curveball, our family is beating the odds and kicking cancer's butt. We're praying daily that new friends we have met at CHEO and online whose families are fighting cancer do the same. 

Lessons in trial and tragedy

This morning while reading about the devastating Nova Scotia shooting deaths of 18 (so far) innocent individuals, it struck me that tragedy is such a broad and inadequate word for such terrible situations. Nova Scotia is a tight knit province filled with incredible and empathetic people. Truly some of the best people I know are from there. It makes my heart hurt that they have to go through this.

By the definition above, one could say (and many have) that my family is living through a tragedy given cancer at the moment, but when compared to the likes of the heinous crimes committed in Nova Scotia and the devastation caused to those families, I can't think of ours as a tragedy. Ours is simply a trial. Something that can be overcome.

Our trial allows us to learn daily life lessons and spend time together, appreciating how lucky we are to be together while going through the daily difficulties of this disease. Ironically the OCSB posted a prayer today about finding the blessings and the lessons in this tragedy.

But how does one make any sense out of the loss of so many lives at the hand of an assassin who didn't even know them and had no obvious motive for wanting to take their lives? What possible lessons do those poor families need to learn from this (other than the obvious that life is short)? And even if there are lessons in this, it's unfair that they won't get the chance to learn those lessons and apply them while their loved ones are still here. 

That's what my family gets to do...find the lessons, learn the lessons and apply the lessons from our trial because we still have time to. Our victim (Ollie) is still here. We can change things and make whatever time we have together better. Don't get me wrong, it's still unfair to him and to us in so many ways, but you always hear that great debate of whether it's worse to lose someone suddenly or if it is harder to have to watch them become progressively sicker. I have to say that I think it would be infinitely harder to lose them suddenly. 

So we mourn with all Canadians right now, trying to make sense of the unthinkable and desperately wishing it wasn't happening when we're all scared and emotional during this pandemic. Sadly, that's likely why it did happen now, but we'll have to wait months to hear the official word while the investigation assesses 16 crime scenes. We will pray for these families to ask for them to be granted patience and peace as they wait and try to find logic in this nonsensical blow.

For those of us on the cancer path, blessings can come when we least expect them. Over the last week for example, I stumbled upon an online Facebook Group for patients and families with Anaplastic Large Cell Lymphoma (non-Hodgkin's). I had been encouraged by my friend Sue months ago to seek out online forums to connect with other cancer caregivers for support. She has been my cancer sherpa in many ways since she's been battling it in her family for years now. 

Thus, I finally got around to searching for forums, found the ALCL one and posted about Ollie' s situation. I  received a handful of kind responses. One of them was from a mama in the UK who has a 3-year old daughter in almost exactly the same situation as Ollie. She invited me to contact her, I reached out and have learned so much and gained hope from her. Her daughter had a bone marrow transplant 73 days ago after having lymphoma in her central nervous system, too and is doing well. She's on a slightly different drug than Ollie, but knows others who have taken his drug and are doing well. She's so positive and yet so honest. I am so grateful to "meet" someone who can relate so much to what we are dealing with and from the beginning without even knowing us is mentoring me and supporting me. In turn, she knows someone whose child with ALCL just got it in their central nervous system, is in the ICU and is experiencing vision issues, so I shared some of our lessons learned and our blog in case it helps her friend in some way. It feels good to connect with others who are facing the same trials as we are and to be able to learn from each other.

On the home front, Ollie is still feeling pretty well and it's been two weeks tomorrow on the Ceritinib. We had to get a refill today. It's enough for up to 50 days and the cost if we didn't have amazing private insurance through our jobs would have been $8490.99! That's almost $170 per day for one medication. Imagine the poor families who don't have private insurance and couldn't afford the life saving drug?! Now that IS tragic. Apparently some pharmaceutical companies will give the meds at a reduced rate or possibly for free on compassionate grounds in certain cases, but I can't imagine having to beg for free medicines to save my son's life. 

Even in Canada where we have an incredible health care system, there are still barriers to everyone getting the best care. While I am grateful that this is one challenge we don't have to overcome, it pains me to think that some will. (Note if you are an ALCL parent in this situation now or in future, contact me and I will help you to find a way to get it for your child. Money or lack thereof should never be a reason for any child to suffer.)

So tragedy or trial, everyone affected comes out with scars. Some physical, many emotional. Ollie's physical scar from his original lymphoma "bump" reminds us daily of our trial and likely always will, even when he is well and as it fades with time. Emotional scars are easier to hide arguably, but so much more important to treat. I will pray that those in Nova Scotia touched by the tragedy and those of us dealing with the trials of cancer will all come through with few emotional scars and the opportunity to apply lessons learned to our lives where possible.

Transplant detours

It's been a pretty quiet week. We've spent it going for walks, nearby drives when requested by Ollie (a drive through Daddy's childhood in Toronto), playing with new toys (thanks to those who have sent gift cards to order things to keep the kids amused!) and working on school stuff. 

We've had a few laughs and some little arguments. The kids are feeling "cooped up" in Ollie's words and sad that we're not in our own home and neighborhood. Ollie's mood is mainly due to the steroids (Dexamethasone) that he's on to reduce the inflammation in his brain. They make him moody, aggressive, angry and sometimes sad. Thankfully this is just short term. 

Abby is missing friends, finding online learning a bit isolating and overall feeling overwhelmed at Ollie' s challenges. 

The waiting is hard on everyone. Today we got some good news, though. Ollie had bloodwork and a check in with his oncologist. He was so grumpy and mad that after a brief chat with him, Mario came to get him and I stayed to talk to Dr. Alexander and Sonia the social worker about next steps. His bloodwork from earlier this week is perfect. The doctors feel that the new meds are working and we can start reducing the steroids. They want to do a CT, MRI, and Optomology scans at the end of the month (in about 2 weeks). They'll also do another lumbar puncture to check the cell count. 

Once they review the results, the oncology (CHEO and Sick Kids), radiation, bone marrow transplant and optomology, teams will confer and decide if they think we can proceed to bone marrow transplant. At this point they all still think this makes sense if the meds work and kill the lymphoma cells. If they see progress, but there is still evidence of lymphoma present, we may need to continue with the Ceritinib ALK Inhibitors for another month or so. In the rare data that does exist for kids using Ceritinib, most kids responded well within 2 months. There are also kids who have been on Ceritinib and stayed well for over a year, but I am not a proponent of giving him a drug for a long time where there is no evidence of the long term effects. 

Plus we're looking for a real cure, not an ongoing treatment. While there are no guarantees that it will cure him for good/that he won't relapse, stem cell transplant is the most likely path to a cure and long term quality of life. He may still need to be on Ceritinib and/or other meds for a year or so after transplant as insurance against relapse, which we are totally okay with. 

So we'll stay in Toronto until his next tests are done and a decision is made about bone marrow transplant. If it will be months more before transplant, then we'll likely go home to Ottawa to wait. If we only need another month on the drugs to get there, we'll stay in Toronto. I believe that we were meant to be here to get the transplant. I don't understand why we have to weather another roadblock on that path, but we'll take the short detour and get back on our path. 

In the meantime we are making good use of our time together and reconnecting at least virtually with old friends in the area. We are grateful to Awi and Tanya for dropping dinner by a couple of times and even though we had to maintain a social distance and couldn't hug, it felt like yesterday since I had seen Tanya. 

My dear friend Christina lives here in the GTA and I am glad to have connected with her even if we can't see each other. She and I used to travel a lot together and she always joked that all roads lead left, but at the moment I believe that all roads lead to transplant.

I love that reconnecting with old friends here feels like no time has passed despite everything. We've been lucky to have such lasting and true friendships and their support is so helpful right now.

Abby and I also did interviews with Canadian Blood Services yesterday for an online story they're doing on Abby and Ollie, sharing her stem cell donation and his fight. All in the interest of encouraging young people to consider getting swabbed as Canada intends to focus on national donors as it rides out COVID-19. Naturally the writer was impressed by how mature and well-spoken Abby is for a soon to be 12-year old. I sat in for her interview and was again overwhelmed by what she did for her brother. I was also struck by how like me she is in her responses and speech patterns. I had answered some of the same questions earlier in almost the exact same way. Whether her answers were the result of her actually listening to the many lessons I've tried to impart to her or her value system being so like mine that she thinks the same way, I was struck by how much responsibility and influence we have as parents to build amazing little humans who will change the world. 

I'm thankful that she also has incredible influences in her friends and supporters. They make her a better, more empathetic person.

Abby participating in her Friday night youth group virtually.

I am so grateful for my two amazing little humans and that God chose me to be their mama. Even when it's hard, it's still a blessing. 

So we'll weather the emotional ups and downs while waiting for more good news and a clearer road map for the next steps and keep you posted. Thanks for your love and support. We wish you well.

Reasons to get well (by Ollie)

We've been talking daily with Ollie about determination, resilience and survival. 

We read a survivor story the other day where a guy with cancer made a list of 118 things he wanted to get well for. Ollie thought that was a good idea. 

In no particular order these are the reasons Ollie says he wants to get well/things he would miss if he didn't fight and get well:

1. Skateboarding

2. Toys (especially Beyblades and Lego)

3. Baths

4. Food (given he's on steroids, there are few moments where he's not eating or thinking about food right now...LOL)

5. My cats (Minou and Chewbacca)

6. My mom, dad and sister (thought he'd never mention all of us! 7-year old priorities!)

7. My bed (he got a new bunk bed before he got really sick and misses it)

8. Playing with friends (including friends from school)

9. NERF wars

10. Hide and Go Seek

11. My bike

12. Watching my favorite shows

13. Waterparks

14. Family (I.e. Grandparents, Aunts and Uncles, etc.)

15. Family friends (I.e. Friends that are more like family)

16. My cousins

17. Campfires and Jiffy Pop (since we bought the fire table for our deck it's been one of his favourite things)

18. Vacations with family

19. Legoland (one of his favourite family trips in December 2018)

20. Playing sports

He also acknowledged that he still doesn't like school, but he misses being there with friends and teachers.

I am certain if he had more attention span other things like music, board games, picnics, barbecues, drives/road trips, going to the movie theatres, knock knock jokes, etc. would have made the list, too. 

Easter Blessings

What a blessed Easter weekend we've had! 

We got out of the hospital on Saturday morning after a disappointing Friday where Ollie had to stay for another day for observation. Fortunately we've learned that when life hands you lemons, you can make some pretty great lemonade if you choose to. So daddy dragged Ollie' s brand new Hot Wheels race track up to the hospital (crazy as it's 8 feet long when set up!) to bring him whatever joy we could while he waited to be sprung from the hospital. When we got home Saturday, we set it up at home and had some family races (Ollie always won!).

Ollie asked if we could have our Easter dinner on Saturday night and in the interest of bringing him (and by extension us) whatever joy we can, that's what we did. Thanks to our friends Lynn and Kerry, we had both a Turkey breast and a ham with all of the trimmings! Abby and Mario also made an Easter cake for Ollie's homecoming (thanks to our favourite little elf, Sharon for sending the Easter egg candies to garnish it!). We also had delicious foccaccia sent by dear friends, Maria, Casey, and Sofia. 

So we cooked it all and had a veritable feast. We did this intentionally because we also happened to bump into acquaintances from 4 North at CHEO on Friday at Sick Kids who are here for THEIR son Ollie' s stem cell transplant! He's little Ollie (as he's under two) and this is his second stem cell transplant. His mom was his donor last week and they're both doing well. So we were pleased to take them some of the feast, too. I tell you this not for credit, but just so you know that just as people continue to take care of us, we are glad to be able to pay it forward and share our blessings with others, too. 

Maria and family also sent gourmet donuts (pretty good, but not as good as Suzy Q's was the consensus), which Ollie has been slowly devouring over the last few days.

On Sunday morning we slept in after a late night (we were all pretty worked up and had a hard time sleeping...not uncommon for us each time there is a significant development in his health). When Ollie finally got up, we had the egg hunt his sister had been patiently waiting for. We gave Ollie some tips to help him find them and Abby sweetly held back to make sure he'd get plenty of treats on his own. Apparently they make beeping eggs for blind kids, so that's what I'll be on the hunt for before next Easter. 

Later, Abby was in her room feeling sad because everything was so different this Easter (she is the Queen of holidays and their rituals). She misses home and friends. We all do, but we had a family meeting Saturday night and decided that it is best for us to stay here for now in hopes that we'll get Ollie to stem cell transplant quicker. Even Abby agreed. Ollie was not happy, but agreed to go along with it since we reminded him that anywhere we are together can be home and at home in Ottawa we still wouldn't be able to go anywhere but home and hospital. 

When Ollie discovered that Abby was sad, he asked his daddy to help him walk to her room to be with her and insisted he was staying with her. He's always been that way when she's upset and always finds a way to make her feel better. She finally understands how loved she is by him and vice versa.

So we spent part of Sunday watching movies and taking walks nearby (with masks and appropriate social distancing). We talked to family and friends and did anything that made us happy.

We walked over to Queen's Park so Abby could see it (she was not very impressed). 

On the way back to our condo we passed the original Victoria Hospital for Sick Children. The first pediatric hospital in Canada was opened there in 1892. Plus, Mario told Abby they'd seen the building in a recent Murdoch Mysteries episode. 

Today it houses the Canadian Blood Services' head office.

When we got back we ate and played Beyblades. We capped off the night reading survivor stories submitted by friends at our request. Each makes me tear up and marvel at people's strength. They are brave, odds-beating warriors like Radley, Lynne, Liam, Lauren, Colin, Strider and Leanne's mom. Please keep these stories coming as they are building us up!

Today was more of the same, but it was pretty windy outside and we had ordered some toys from Toys R Us on Saturday for curbside pickup, so we took a drive to Don Mills. We brought very few toys with us and this was one of the things Ollie told us was making him sad, so we used a gift card sent by dear Margie to buy a few new things and were grateful to the staff there who were wearing masks and gloves and made this a safe pickup for us (we also wiped them down with antisceptic wipes before putting in the van).

We also got gas since it's the first time we've driven anywhere in the last 3 weeks ($0.73/litre!). And we found a local grocery store that was fully stocked and had all of the things Ollie has been asking for four weeks that we were unable to get. I honestly felt giddy whipping through the aisles (with mask and gloves on) and wanted to buy one of everything! This must be what it felt like after the world wars when the rationing was lifted and things were readily available for purchase again.

We're due back at the hospital tomorrow for bloodwork. Our oncologist, Dr. Alexander checked in with me by email yesterday to ensure everything was okay (confirming for me that she is kind and this is more than just a job to her) and our homecare nurse did today as well knowing we had had a minor issue with no blood return when flushing and hepronizing Ollie's broviac on Sunday. Everything was fine today, and I feel good knowing that we are in good medical hands here. 

I've also been doing some research this weekend on Dr. Alexander (went to McGill for undergrad, Harvard for medical and graduate school with 20 years experience in Oncology in the US and in Toronto) and to see the success rate of his new Ceritinib drug (very good results). I also looked at other options with respect to other possible drugs so that I know what else we might try. I have learned that I need to know about possibilities to advocate for next steps as the parent of a critically ill child. So I feel equipped again for moving forward. Onward...