The Official End of Treatment

[Photo Description: A masked Ollie and Dawn pose on the first floor of CHEO under a street sign that reads, "Memory Lane".]

Yesterday was our last of three years post stem cell transplant regular oncology checkups and bloodwork at CHEO. How naive was I when I thought we'd be done with cancer in 8 months of treatment maximum?! 😆 It's been almost 4 years since we started at CHEO!

On October 22, 2019 we started our medical journey at CHEO when we arrived for our first tests, so today we took a little trip down memory lane. 

[Photo Description: Ollie, Micah, Isaiah and Theo sit in the lab waiting room talking and watching tablets.]

We started at the lab where we bumped into friends Paula and her boys Isaiah, Micah, and Theo who were also waiting for bloodwork. They were one of the many amazing families who helped during our battle. How fitting that we had a reminder of the army that helped us over the past 4 years.

Also fitting that while in the unusually long line waiting at the lab, CHEO's fearless leader, Alex Munter came along, said hi and set about trying to find out why the line up was not moving faster and updating us soon after. A simple example of the leadership at CHEO that has kept things moving for us even during the difficulties of the pandemic. In February 2020 Alex came to Ollie's hospital room after the story about his missing stuffed llama went viral. At that time Alex told Ollie if he needed anything to let him know. Needless to say, Ollie and I have taken him seriously and never been shy to ask for the things we think can make things easier for families like ours. In turn Alex has always considered every request or suggestion and done what he could to help. So in keeping with his action-oriented approach, he followed up tonight by email, asking our opinion on some other possibilities to make the lab easier and more efficient for families. How lucky are we to be able to influence even better care for CHEO families?!

[Photo Description: Ollie wears his CHEO shirt, shorts and a mask and poses in front of a mural of children playing in a tree with the word CHEO in a cloud above. Ollie is giving two thumbs up and holds his cane in the crook of his arm.]

After Alex left and we waited with our friends for a while, I did have to go into the lab reception area and advocate to be accelerated so that Ollie's bloodwork would make it into the courier by 2 pm to head to Germany for his final inclusion in Dr. Woessman's Anaplastic Large Cell Lymphoma relapse research and be tested one last time to determine if there is any Minimal Disseminated Disease (MDD). It has been negative (or clear) every single time we've done it the past few years. This has given me significant comfort in concert with his scans, even though the test is not yet widely used for lymphomas. 

They did accelerate us to make the courier and Ollie was a complete champ. We did it so quickly that we forgot to ask for the freezing spray that numbs his arm before the poke and he didn't even make a peep and only mentioned it after we were done, saying his arm was a little sore. From a boy at least 3 of us had to hold down 4 years ago as he kicked and screamed during pokes even with freezing spray, to this calm and capable of handling anything boy. What a transformation.

[Photo Description: A photo of posters in English and French found on the reception desk in the CHEO Medical Day Unit promoting the Patient and Family Advisory Council (PFAC) and Campfire Circle Family Picnic for oncology families. This is one of the many initiatives that the Oncology PFAC that I am a member of has organized to connect with and make cancer care easier for new families.]

On to oncology where we had a final checkup and they told me this was really it...that there would be a check in once a year, but no scanning unless there were symptoms and they were a phone call or an email away, but didn't need to see us again unless we really needed them. I admit I got teary and a little fear gripped my heart all of a sudden. I've felt somewhat this way each time we reached a new milestone where we'd reduce the frequency of visits, but this was really the last one. They consider him to be well and completely stable and no longer in need of them. After my panic and tears I used my best Kids Kicking Cancer Canada power breathing to help the panic pass. We gave big (masked) hugs to our post transplant clinic Nurse Julie who has taken amazing care of us the past two years, and helped me through more moments of panic than I could count simply by responding quickly and getting us access to whatever we needed to keep him well. She is one of the most responsive health care practitioners I've ever met and she has been such a blessing to us.

[Photo Description: Ollie eats a sub at the Oasis Cafe at CHEO]

From there we had one more of the likely hundreds of subs that we've eaten at the cafe. For whatever reason the food even tasted better today than it usually does.

[Photo Description: Ollie lies on the table and is connected to 13 wires for his routine EKG in cardiology.]

On to cardiology for EKG and Echocardiogram  and I laughed out loud remembering them trying to get Ollie's hospital bed down that corridor after relapsing in his brain. I did not imagine then ever being able to laugh about anything that happened to us during that awful time. Time and doing the emotional work really does heal wounds (as my therapist reminds me).

[Photo Description: Ollie lies on the table for his Echocardiogram as the technician's gloved hand can be seen using the probe during his test.]

Next we popped up to 4 North to say welcome back from mat leave and goodbye to our angel on earth, Dr. Abbott. Our other oncologist angel, Dr. Brianna Empringham is also on mat leave right now. After a short visit, big hugs with Dr. Abbot for Ollie and I. She marveled at how tall and lean Ollie was since she last saw him a year ago (he's lost 22 pounds since stopping the Lorlatinib a year ago and built a lot of muscle playing all of the sports he plays, plus he's still in the 97th percentile for height for his age). She told me I was a great hugger. I could hug her forever and never let go after all she's done for our family. LOL Grateful to have also seen a bunch of our incredible nurses, our favourite pharmacist and one of our child life specialists, too.  

We were too busy hugging our team in MDU and 4 North  to take pics! And as they all reminded us, we'll see them in October at the SIOP international oncology conference that CHEO is hosting and Ollie and I are speaking at on patient-centred care. I teased Dr. Abbott that they asked us because I was clearly not afraid to ask for what we needed. Dr. Abbott told me that I always asked in the nicest and most respectful, yet assertive way, and she thought I should be teaching a class to all little girls so that they'd all get what they needed as they grew up. As an outspoken person who has often been concerned that she is seen as too loud or brash, I was flattered that she saw me that way. She's done everything I asked and more for 4 years. Not once did she ever say no to any of my ideas or make me feel like I wasn't an equal partner in Ollie's care team. She always left us in good hands when she couldn't be with us and doesn't take any credit for her leadership in helping him to survive. She could ask virtually anything of me and I'd do it for her in a heartbeat, no questions asked. She thanked us for the visit, wished Ollie a good start to his school year next week and promised she'd see us in October at SIOP.

Next was the requisite visit to the gift shop. And for once my brave boy left empty handed because he already had all of the Lego sets that he wanted and couldn't rationalize me spending $8 on the world's tiniest harmonica that he'd admired. So he picked a CHEO shirt for daddy to match the one he himself already had and left happily. He's maturing so nicely and better understanding that while it's nice to have things, what matters most is having the best people in your life. 

We had one final stop before we could leave. Ollie indulged me and went along with going back to the CHEO playground we'd stumbled upon on our very first day at CHEO during testing before diagnosis on October 22, 2019. 

The playground is located behind the main building of CHEO, near the Children's Treatment Centre and Roger Neilson House. 

[Photo Description: A split photo. In the left is a photo of 7-year old Ollie hanging down headfirst and making a crazy face from the top of the playground slide at CHEO on his first day at CHEO for testing on October 22, 2019. The second image is of Ollie standing in front of the same slide with two thumbs up and holding his mobility cane on his last official day of oncology and post transplant treatment, August 28, 2023.] 

On that day almost 4 years ago we had zero idea of how much our lives were about to change nor how important CHEO and everyone who worked there would become to us. The 7-year old kid on the left of the photo above (who was not evidently sick or short of energy when diagnosed with stage 3 cancer) was ready to dive headfirst down the slide like the crazy brave kid he always was and used this bravery every one of the last 1,406 days since we started at CHEO. The courageous kid was more subdued this visit and opted to just pose in front of the playground instead of playing on it. A sign of his newfound maturity as he becomes a tween and is slowly moving away from what is left of his complicated childhood.

[Photo Description: A split photo. On the top is a selfie of Ollie and Dawn smiling while sitting on the wooden swing in the Little Garden on October 22, 2019. On the bottom is a photo a passerby took of Ollie and Dawn posing in the same garden beside the Celebration Bell on August 28, 2023.]

Finally, we reached our ultimate destination in CHEO's Little Garden located in the little forested area behind the playground. 

The bell was first rung by Hillary McKibbin to mark her remission of her Aplastic Anemia. Due to the threat of COVID and her being severely immuno-compromised, her family needed a bell that she could ring outside safely, so her incredible mama Kelly McKibbin built one and later donated it to CHEO so that ALL families could celebrate and mark milestones. 

[Photo Description: Ollie holds the string of the Celebration Bell in the CHEO Little Garden, readying to ring it to mark his last official day of oncology and post transplant treatment.]

I met Hillary's mom Kelly online just a few months before Ollie was diagnosed. I'd seen Hillary's story and plea for stem cell donors in the news and her story called out to me and touched me in ways I didn't understand then. I felt called to follow her journey and connect in empathy with her brave mama. Kelly and I had corresponded from time to time for months via Twitter private messages as I sent her encouragement and marveled at their bravery in telling their story so honestly and publicly. When Ollie was diagnosed, Kelly was actually among the first people that I told and we were both shocked that we were suddenly living such similar lives. I believe it was divine intervention that brought us together and we supported each other throughout the pandemic as we both put everything we were into getting our children well, keeping them safe, and encouraging others to donate blood products for kids like ours. 

[Photo Description: A photo of one of the gold plaques with black writing on the purple post of the bell that reads, "Celebration Bell: This community bell is for all families to enjoy. Ring it to commemorate a milestone, a recovery, or an achievement that brings you joy." The text is also translated into French and the CHEO Foundation logo is on the bottom.]

When we found the bell I read every word aloud to Ollie and got choked up as I read these words to him. Today we celebrated the milestone of being done our final of three years of regular oncology checkups, officially being off treatment, fully recovering from his cancer and stem cell transplant, and this was certainly an achievement that brought us joy. And we were marking the occasion on Hillary's bell. I couldn't imagine a more perfect way to end our last official day at CHEO.

We finally made good on our promise to our friend Hillary that we'd one day find her bell and ring it, too. So here we both are ringing the Celebration Bell. We rang the heck out of that bell (but don't worry it's still perfect and ready for many many more celebrations for other families!)!

[Photo Description: The commemorative plaque on the post of the bell that thanks all who contributed to the bell's creation.]

Now realistically, cancer survivors don't ever get to be done with their medical journey. While Ollie is officially done in oncology, he continues to be seen twice a year by endocrinology and his bone specialist for his hypothyroidism and osteopenia. He'll still visit opthamology and his retina specialist at least annually. As big things happen in his life and he transitions through different growth stages where he may be triggered by all that he's survived, we'll still see the social workers or child psychologists when needed. He has a pulmonary function test in September to ensure his lungs are still healthy. Still a lot, but so much less than our normal of the past 4 years. 

And I'm still on the Oncology Patient and Family Advisory Council (PFAC), a Family Leader for the CHEO Research Institute, and a member of the CHEO Inclusion, Diversity, Equity, and Accessibility (IDEA) Committee, so I'll still be part of the active CHEO family. And I'm still a Co-Lead of the Education and Training Matrix for the Canadian Pediatric Cancer Consortium, so am committed to continuing to help make things easier for families at all pediatric cancer centres across the country.

Ollie was randomly emotional yesterday, too. Maybe in part because he felt mine, but there were lots of extra hugs from him and requested by him throughout the day. One day he'll truly understand how his army wouldn't give up on him and saved his life multiple times. He is one of their many successes and miracles.

I feel sad AND happy, AND fearful AND hopeful about reaching this milestone and the ending of a huge part of our lives. We remain so grateful every day for the unbelievable people at CHEO who have helped us to survive so much. They truly treat the whole family and make you feel part of theirs. 

I think the Buddhist Proverb below sums up pretty well how I feel right now. Stay tuned to hear more as we get started on our next new beginning.

[Photo Description: A quote that reads, "In each loss there is a gain, as in every gain there is a loss, and with each ending comes a new beginning. - Buddhist Proverb"]

He's going to ring that bell!!!

It's late and I don't have time to write a real post, but since all of you have been following along so amazingly all year, I don't want you to miss this...

Ollie is going to ring the bell at CHEO tomorrow (Friday, November 6) at 1:15 pm EST and has asked us to live stream it so friends and family can be virtually present. Apparently you don't need an account to watch here:

https://fb.me/e/fsCiiwL2E

Recording it and will share if you can't make it.

Hometown advantage

We made it home to Ottawa Sunday afternoon after a fairly smooth ride back. With our dear friend Vic once again following us back from Toronto to make sure we had help if we needed it, we stopped a few times en route. Because of COVID-19 virtually all public restrooms are closed, so it's almost impossible to find a place to pee! Thankfully we had Ollie's trusty commode in the van and I'm not ashamed to say I used it out of necessity! I have never been so glad we bought the van with those stow and go seats where we just put one down into the floor and used that space for the commode. We also had to stop to get Mint Chip ice cream to take with some medicine, but Ollie was disappointed that it was not Merry Dairy ice cream.

We got home late afternoon after about a five and a half hour journey. Ollie did pretty well, but in the last two hours we gave him morphine as his muscles were really hurting despite extra padding, reclining a bit in his seat and trying to get him to shift positions and stretch at each stop.

When we turned into our street, a beautiful socially distanced gathering of friends was there to welcome us home with clapping, yelling, whistling, signs, groceries, gifts and so much delicious food. It was a hero's welcome for Ollie and we were so touched by it. 

Our dear friends who took care of the cats and fish decorated inside, too and coordinated with other incredible friends to stock our fridge and pantry. Others brought food for the freezer or dinner the first few nights. Over the last days we have received so many expressions of love. From spring's first tulips to our first BBQ of the season, we've had a beautiful taste of homecoming and we were so thankful.

Gifts for Ollie have arrived from friends and family, too. Anything to bring him some joy. The one below is bigger than he is and he was thrilled with it and plotting to set it up on the backyard for family Nerf wars. I love that the fact that he is blind didn't even factor into this planning as he was convinced he could shoot us all by listening and figuring out where we are. 

Within minutes of arrival at the house he had his Mint Chip from the Merry Dairy down the street and was happy when friends later brought him Funfetti too.

Monday and Tuesday were unpacking and figuring out a new rhythm kind of days. Ollie sleeps upstairs in his or our room and comes downstairs for most of the day. 

Chewbacca the cat is clearly happy we're home. Our incredible neighbours, Mike and Barbara also took care of the beasts while we were away and sent the kids daily hilarious reports of them getting into trouble. Stephen's stories of Chewy' s mischievous acts also made them laugh.

I forgot what a stress reliever our furry friends could be despite the extra work they sometimes cause.

Ollie is getting stronger by navigating the stairs with help. At night if he's too tired, Mario carries him up to bed. He's 37 kg, so it's way harder than it used to be! By morning and after sleeping he's generally feeling stronger and can go down the stairs walking slowly or on his bum with support. He and I used to go down the stairs that way together (with him on my lap) when he was tiny and I had sciatica pain and couldn't lift him. Just another example of how things are in a crazy way almost frozen in time. 

He's walking more at home and with more confidence. He's also been calmer and less angry (steroids do that to him). Coming home was the right decision to help him mentally for this next set of challenges.

Wednesday we were back at CHEO for check ins with our oncology team, the weekly central line dressing change and radiation planning.

It was also honestly like coming home being in the Medical Day Unit (MDU) with all of the nurses and doctors we know coming by to say hello or to check in because they knew we were back and would need support. Our social worker also came by as did our palliative care team (pain management). Many congratulated Ollie on having a pizza named after him. 

We met our radiologist, Dr. Chan, too. What a patient and kind woman! Ollie had been NPO (couldn't eat) since midnight as we had planned for him to do the radiation planning while sedated under general anesthesia. Ollie is on a high dose (5 mg twice a day) of Dexamethasone steroids to cool down his optic nerve and help to hold back the lymphoma in his cerebral spinal fluid. This makes him very "hangry" so he was demanding to eat and imploring all of us to let him do the radiation planning without sedation. She agreed to let him try and told him if he couldn't do it that way, we'd try again tomorrow with sedation.

He was so happy and ate so much!

He did later have doubts about doing the planning without anesthesia, but daddy and I convinced him to try and we wouldn't be mad if he couldn't do it.

So off to the General and it's cancer centre. The technicians and radiologist could not have been a more well-oiled machine. They talked Ollie through every step, encouraging him and praising him each time he did what they asked. 

They made his mask and he was great until the end when they were doing the CT and he'd had enough of the mask holding him onto the table. But he got it done. No drugs. And he was still. He never could have done that 6 months ago! 

We're coming up a plan to give Ollie some drugs to calm him but not put him to sleep for his sessions of radiation as it will make it easier so he doesn't have to be NPO every day. 

 

His new third generation ALK Inhibitors were ready at CHEO today, too. One moderate sized tablet once a day. No cost thanks to Pfizer's releasing them to us on compassionate grounds. CHEO had already done the leg work to request this drug before we left for Toronto, so I am grateful for their foresight. Ollie took the first one this afternoon with no issues.

We know of three other families (2 in UK, one in Australia) with kids with Anaplastic Large Cell Lymphoma  taking this miracle drug and getting them into remission. One of these incredible moms sent me a link to an article where a teen with an incurable tumour who had fought for years took this drug and she is now on the way to being cancer free when they never thought it would happen for her. 

So I prayed over these drugs today, begging my God to make this the miracle we need to get Ollie well, too. I have faith and hope in the powerful combination of a team we trust, a miracle medicine, targeted radiation and the strength and determination of one amazing boy. Here we go...

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.

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.

Oncology, Wii Games and Storm Troopers

Life becomes surreal the moment that you get a diagnosis that you have a critically ill child. There is no time to process or feel all of the big feelings as you are reeling and trying to learn everything you can about your new reality on the same day that your child is diagnosed.

So we stumbled into the Medical Day Unit at CHEO where oncology is housed and waited to hear how our life as we knew it would completely change. While we waited Ollie spied a Wii machine in the corner and we kept ourselves busy figuring out how to work it in hopes that we could do one thing to make things normal for our active 7-year old who aside from a crazy bump on his neck had no other obvious symptoms of cancer. He and daddy got it going and it was a blessed distraction.

Eventually we were shown into an exam room. There we met our new support team including the head of oncology, our assigned doctor, our social worker and our oncology coordinator. We began talking and asking questions when Ollie interjected, "Are we just going to stay here and TALK all day?!" So the social worker took him back into the waiting room to play more Wii and while there he also got to see a bunch of Storm Troopers who were visiting that day. All in all a pretty great day for him...other than the diagnosis that is. I'll write more on this another time because CHEO really has an incredible way of making the darkest times fun for kids.

We spent hours with the oncology team and they let us ask every question we could think of. We're still waiting on the final pathology and tests to confirm the ALCL and therefore the exact treatment plan, but we know that they are going to start him on chemotherapy and we are looking at an intensive treatment period of at least 6 months. The good news is that it is treatable and kids generally respond really well to treatment.

Eventually we brought Ollie back in and they helped us to explain it all to him. It all became too much for him even though his doctors were so positive and said that they were going to cure him and he began to plug his ears and talk very loud, which the social worker said was normal escapism. Unfortunately we had to cap off a hard day with a blood test to check his levels to see if anything had changed in the month since we had first had a blood test at CHEO.

Finally, we got to go home. I spent a good part of the rest of the day in tears as I texted and called family and close friends while Mario watched movies with Ollie. I informed the school administration team and the kids teachers by e-mail because I knew I'd have to pick Abby up from school and didn't want them asking me about the results in front of her and risk having a breakdown.

When I arrived at school and was waiting for Abby, the office administrator and two teachers that my children have had already knew and just hugged me and told me they were all with us and we would get him through it, then quickly scattered when Abby came in. When we left and I told Abby the news at her insistence before we got home, she was inconsolable. It was the second time that day that my heart split in two. When we both calmed down, we agreed that this will be our greatest challenge, but we will overcome it, and then we put on a brave face to go home to our new normal.