Lollipops and Energy

We've had a couple of good days! Ollie's energy was up, he was ravenous (eating everything in sight) and he was highly motivated to have some fun.

Today he was up early and walked to the playroom on the other side of the ward and back. This may not seem like a big deal given 42 days ago he would have been in.constant movement, almost bouncing off the walls all day. However, considering all he's been through, the fact that he's hardly been out of bed to do more than go to the bathroom and maybe explore his room a bit, that he's doing physio exercises to get stronger again and to work on his balance and uses a wheelchair to go anywhere beyond 10 feet, this is huge. 

He also wanted to go for a ride too the gift shop and bumped into the Lollipop Guild (Molly Penny, Dr. Tiny and Yippee) as they were giving out candy.

It struck me that this was a perfect bookend as on his first day of chemo Molly Penny and Dr. Tiny were there and also today when he started what we hope will actually be his last round of chemo at CHEO (because after stem cell transplant as long as it works and there's no relapse, this would be his last at CHEO).

We had a sweet and unexpected quick visit from Samar, who brought some treats and a cool new hat (Ollie later  insisted on wearing it so far down that it bent his ears and made him look like Dobby!). She lived this experience with her son a handful of years ago and I am grateful to her for her understanding and advice.

Ollie enjoyed playing Beyblades with CHEO volunteers the last two days.

He also felt motivated to invite another patient to come and play with him. He had planned and organized everything to hold an arcade event with a bit of help from Child Life. Unfortunately since Ollie still obsesses quite a bit when he can't control things, we were trying to keep him from charging in and demanding that his me friend come out when the poor kid wasn't feeling well from chemo, so we agreed he could write him a letter. He hasn't written more than his own name in 6 weeks. With a bit of assistance he was able to write every word on his own steam. 

Abby has been feeling under the weather, so we've been away from her and Mario a few days. Training for Toronto I guess. Hard on Ollie and I'm not looking forward to only seeing them certain weekends for up to 3 months. Mario could take more time off and Abby could attend school at Ronald McDonald House there, but given its her graduating year, we know she wants to be with her class and friends and be as normal as possible. 

I've been starting my research on Sick Kids Hospital, radiation, Graft versus Host Disease, etc. Met two parents here now who have been through stem cell transplant there, so lots of good advice. 

I've also been meeting with vision loss specialists from CHEO, the Children's Treatment Centre and next week I meet with CNIB. Turns out there are lots of resources and although we're all still hopeful that his sight will come back, I need to find resources to help for now and future. I am very mindful that here Ollie had context because he was able to see everything before. In Toronto he will literally be experiencing everything blind for the first time. It's scary for me to consider all of the stuff coming at us next, so imagining that I am seven and have no idea what is coming at me would be terrifying.

Matches made in heaven

Today was technically the start of round 4 of chemo, but began with a lumbar puncture with intrathecal chemo because his levels hadn't been high enough to plan to start anything else. Ollie had a platelet transfusion last night so those were way up, which is great because yesterday he was bruising so easily that even when he strained to go to the bathroom, he had tiny bruises breaking out across his abdomen. It looks like a purple and blue rash. This is very scary when you don't know that this is normal when platelets are low.

Today we also figured out that some significant pain that he was having yesterday was a result of a little bump he got at home when he went to sit down on the stairs to put his boots on and didn't properly judge where the stair was given his blindness. All day yesterday we were worried he had a lesion of lymphoma somewhere on his spine. Turns out low platelets made a major bruise from a normally minor bump. It's a far cry from the bouncing out the walls boy we were home with 2 months ago. An x-ray confirmed he didn't break anything.

The LP happened so late this morning that Mario ended up going down to his LP and waiting for him to get back to Recovery while I had to go to a video conference with Sick Kids Hospital and our CHEO oncology support team. On our side I had our Oncology Coordinator, Virginia, our POGO Interlink Nurse, Graham, as well as our head Oncologist, Dr. Abbott and our Oncology Fellow, Dr. Pinto. On their side there was a clinic nurse and Dr. Ali from the Stem Cell team. 

There was a ton of information thrown at me with lots of risks discussed and I'll write more on all of this another day, but for now I am focusing on a few key pieces of information. Foremost is the fact that they have identified three perfect matches for Ollie's stem cell transplant! So many prayers answered!  I was completely choked up and all members of my support team were smiling ear to ear as it was the first they'd heard, too.

Sick Kids is proceeding to further testing for the top two so that we have a Plan B immediately ready if Plan A isn't viable for some reason, but it's amazing that there's also a Plan C. 

So they're ready for us to head to Toronto 4 weeks after the start of our next round of chemo (likely tomorrow!) and we'll be there for at least 6-8 weeks and possibly nearby for up to 3 months as we wait to see if the transplant will take or not. The first 8 days will be total body and brain radiation to wipe out his immune system and prepare him for the transplant. On the 9th day he'll receive the stem cell transplant, which is basically as easy as a blood transfusion for him. Then we'll go into serious isolation where only Mario, Abby and myself (and the medical team) will be admitted to see him for three weeks to protect him from infection since he won't have a working immune system.

There's lots of other tough stuff like not being able to take him to any public events or gatherings, shopping malls, etc. for 6 months after the transplant. Basically home and hospital like he is doing now. And they've told us to really limit people at our house, especially young children as he'll have no immunities and after the 6 months post transplant he'll have to have all of his vaccinations again. 

I know it's a long tough road and there's no guarantees and so many statistics and risks to consider, but I know there are good generous people out there who have agreed to donate and give him a new immune system so that he'll live. Everything else is irrelevant right now. So we're letting ourselves just be happy for now and will think about everything else tomorrow.

We're also still going to promote the heck out of the stem cell swabbing event on March 5 because we know there are still so many families out there who don't have even 1 perfect match, especially those from other diverse cultures. So please tell everyone to come out in honour of Ollie because now we need to pay it forward and find other families their miracle, too.

We're grateful for this blessing after 40 difficult days of sacrifice. I feel like we did Lent before Lent even started! Don't worry, we'll still observe Lent though!

So next order of business is to pray for Ollie to regain his vision to make the next part less scary and difficult for him. We still have some tricks up our sleeve to try to help him see and I'll share more when we see results. Stay tuned.

And then we'll pray for a successful transplant. 

And after that, I swear I will pray for anything and everything any of you ever need and help you in any way I can anytime you need it. 

Big love to all of you.

The Happy Place

Ollie wanted Daddy to stay with him both Friday night and Saturday night, so I went back to hospital for a few hours Saturday during the day, but spent the first two consecutive nights away from the hospital in 38 days. It's incredible what a difference real sleep makes. 

On Sunday morning as Abby and I were getting up and ready for mass, Ollie called and explained excitedly that he had a 4-hour day pass to come home! I guess the nurses and doctors got tired of hearing Ollie beg to be let out and bought themselves a quiet afternoon! 😜

So we shifted gears and I left for the hospital to pick them up. When I parked in the hospital parking lot I was crying. Feeling happy that we finally get too take him home even if only for a few hours, scared that he won't want top come back to the hospital after being home and a general overwhelming flash back of how much we've endured over the last 38 days. But you pick yourself up and you dust yourself off and you keep going.

So we brought Ollie home. He was happy, but had a hard time not thinking about being back at the hospital and kept asking if he could get out of isolation when he got back. We tried to encourage him to enjoy being home and not worry about the next thing, but it's how he manages the stress of changes constantly coming at him and as a planner myself I can appreciate this as he likely got it from me.

Abby was thrilled to be with him.

Here they admired Llama Llama Blue Pajamas the Third, courtesy of Shoppers Drug Mart!

Ollie requested chicken burgers and tater tots for lunch, so that's what we had! 

For dessert a bit of Merry Dairy ice cream. We didn't have his favourite (confetti), so he ate mama's mint chip.

Even Chewbacca (who normally stays away from Ollie because his energy sometimes scares the cat) came up and sat in his lap and stretched out in happiness.

Being home was kind of exhausting, so he rested while trying out the new awesome shark blanket that our friend Mary made for him!  

Abby was happy to show of her new sunshine yellow t-shirt.

The afternoon went by too quickly. Before we knew it we were dropping Abby off at a friend's for a birthday party and heading back to the hospital. He was clearly tired. It was a lot of excitement for a guy who gets out of bed very little right now.

Ollie asked to bring the shark back to the hospital where Mario had some fun with it.

Chillin' with bear 

Happy to finally hear he was out of isolation (again).

We had a visit with Cristina who so kindly brought by the proceeds of her Zumba fundraiser.

Finally, Abuelita came for a visit and brought a nice dinner. Mario had to go and get Abby after her party.

So nice to be home together even if for a short time, especially since if chemo begins son, we won't be home for at least another 16 days.

The Healing Properties of Music

Saturday at Ollie's request, Allie (and mom Lori) came to visit. She brought along her ukelele and put on a concert for us! 

She asked Ollie what his favourite songs are and then proceeded to find chords and lyrics online and did great impromptu renditions of Old Town Road, Havana, Despacito, a bunch of classic rock faves and a few Allie Goodyear originals. She has so much talent and is the sweetest young woman. She also wrote and performed the new Merry Dairy jingle! 

She used to be at my kids school and went to their daycare. I always marveled at how kind and attentive she always was to my children even before I got to know and become friends with her mom. She's been a terrific role model to Abby who goes to youth group with her and adores her. 

She was so kind to agree to come and spend her Saturday afternoon bringing us joy. It was the first day in 37 that I have seen him truly happy and enjoying himself without stress about what is coming next. He even wanted to get up and dance!

Abby also attended a musical where dear friend Mackenzie was performing on Saturday afternoon. 

After she attended a Zumbathon fundraiser for Ollie that was held by dear friend Cristina and associates of hers. I was unable to attend, but Abby represented and it was so sweet that so many of our friends from different walks of life went. A big thanks to Boxing 4 Health Inc. for also donating the space.  Abby had a blast.

In my worst times before this, music has always made me feel better and I am grateful to friends for bringing music into my children's lives right now. 

Kindness and Connections

As lovely as it is that it is World Kindness Week, I can't help but think that we're missing the point of being kind if we have to pick a week to get everyone to practice kindness.

Fortunately we have been surrounded by kindness and support everywhere we turn since Ollie's diagnosis in November 2019. From our best friends, to members of our community to even perfect strangers, people have gone out of their way to help us. Meal trains, chauffeuring our daughter to events and lessons, the school and church holding events in honor of Ollie and benefiting CHEO, and this week a veritable army of strangers was trying to help us find a lost stuffed llama (see previous post for context if you missed it). 

To my great surprise, my tongue in cheek tweet about a lost stuffie got retweeted many times and seemed to resonate with people. Wednesday evening the first replacement Llama Llama Blue Pajamas arrived at the hospital. Turns out friends of our oncologist, Dr. Abbott had one, saw our call for help and sent her LLBP the Second to make Ollie happy! 

A package from school also arrived Wednesday. It was a beautiful superhero cape handmade by one of the lovely teaching assistants, with a St. George Dragon on it and signed by everyone at school. This was for their Superhero for CHEO day where they raised over $700 in donations for CHEO in honour of Ollie. 

On Thursday, Ollie had an MRI under sedation. When we arrived to meet the anesthesiologist and MRI staff, they made a huge fuss over Ollie and what a celebrity he was and even asked him for his autograph (he very seriously complied)! Everyone was genuinely thrilled to congratulate him on his fame.

Later that day, Alex Munter, CEO and President of CHEO stopped by to meet Ollie (Alex and I had met before) and see how the hunt for Llama was going. He joked that we'd likely receive an army of Llamas after all the interest and told us if we needed anything not to hesitate to contact him. I've always admired him and how much passion he brings to every challenge he takes on. He has a way of making everyone around him feel important. We appreciated his visit and I told Ollie later that with his bravery, determination and focus I was confident that he'll be an important and kind man making things better for everyone one day, just like Alex.

The Llama that Shoppers Drug Mart sent Ollie also arrived at the house on Thursday night. Abby was pretty thrilled to receive it on her brother's behalf. Such kindness from a major corporation. Clearly one with people who care. And Shoppers was asked to help by Jill Promoli who is an advocate for getting the flu shot since the tragic death of her son Jude almost 4 years ago when he was only 2. She went to bat for Ollie immediately simply to bring him joy. What strength and compassion she has to help others after all she's been through. Truly kind.

I was also happy to get a message from Claudia at CTV who did the interview with us Wednesday and wondered how he was doing today and if we had received a Llama. She was so kind, gentle and patient during the interview even as he started to get impatient and say, "Next question." when he didn't want to talk about something anymore. He may be a politician or a press secretary yet!

We also had a wonderful visit with Mumtaz who is a dear family friend and one of Ollie's former daycare early childhood educators. She is hands down one of the kindest souls we know.

She brought news and gifts from his daycare at school...guess what they bought him...little llama friends for Llama Llama Blue Pajamas!

Today Ollie had no procedures or tests for a change, so he had a visit with his new CHEO Buddy, Steve. Steve is a first year medical student at University of Ottawa and applied to a mentoring program run by CHEO to spend time with kids to explore whether pediatrics might be of interest when he chooses a specialty and to help a CHEO patient have a friend to distract them while undergoing treatment. Since I was a Big Sister and Mario was a Big Brother for Big Brothers Big Sisters Ottawa before we met and had our kids, this seemed like a perfect program to help our son through a difficult time. We both know first-hand the value of mentoring youth. 

Steve was terrific and gentle with Ollie, navigating his blindness challenge like a pro. They played Beyblades where he marveled at Ollie's ability to identify each one of the sizes in his collection by feel. He also coached Ollie through building some Lego mini figures. I can already tell Steve has a kind heart, a great bedside manner and would be a great pediatric doctor. Can't wait to see what he does in future.

Ollie was also thrilled to be visited by his teacher, Ms. Sherri. She had come yesterday at his request, but when his MRI took longer than expected, she visited with me and then promised to come again today after walking the picket line for the teacher strike. Again, I defy people to tell me that educators aren't amazing and care more about money than our kids.

She has this incredible way of reaching kids where they are. She not only taught him some new ways to navigate the world blind, but she also built him up constantly and asked him sincere and gentle questions about how he was feeling about everything. His answers were the most honest I've heard from him. His psychiatrists could take lessons from Ms. Sherri!

She also insisted he demonstrate how he could get out of bed and move around the room independently. 

While Ms. Sherri was there, I got a message from Sophie at the CHEO Foundation telling me that some dungeons had been dropped off specifically for Ollie. I popped down to pick them up. Turns out the staff at a Calendar Club Store that is closing its doors saw his interview and thought he'd appreciate some brand new games, puzzles and a big huggable new friend...So very sweet of them to think of him at a time when they are actually losing their jobs!

So these are but a few of the many acts of kindness that have happened to us this week. I want to end with one final example that is too meaningful to me to be random or a coincidence. 

Anyone who knows me knows that I like to connect dots and find connections between things. It's a big part of what I do in my job and is sometimes hard to explain. A former boss and friend of mine who understands the power of this once told me that it was one of my greatest strengths and not that common a skill. I believe in connections between people, ideas, organisations, families, communities, policies...you name it and they're there if you try to piece things together. 

Tonight before I left the hospital to come and be with Abby, the nurses handed me another special package that arrived for Ollie. When he opened it, there was another little Llama friend for Llama Llama Blue Pajamas with a card explaining it was the only Llama that the donor could find. The card said that Louise from Brampton was sending it because she liked to do random acts of kindness and we could look her up on the internet if we were interested in why. So I just googled her and now I'm crying because the dots were connected for me. She does 26 random acts of kindness to strangers whose stories have touched her heart - one act for each life lost at Sandy Hook Elementary School. 

This was a tragedy that touched me deeply. My Abby was mere months younger than the little angels who were senselessly taken that day and my mama's heart ached then and now for all of them. I have followed those brave parents on social media since and tried to help them spread their messages far and wide. I have marveled at their bravery and determination to keep going when they must just want to lie down and let go so often. I feel that way often right now and my child is still alive. I feel like Louise' kindness was divine intervention to remind me that others who suffer more than we do have kept going and we can, too. 

So with 36 days under our belt and at least another 18 more to go with his next round of chemo scheduled to start Monday, we won't lie down, we'll keep going, fueled by the kindness of so many and one day we'll pay it  forward, too. 

Swabbing, Llamas and Faith Journeys

It's been a busy few days...yesterday Ollie went into the OR under general anesthesia to have several simultaneous procedures: a lumbar puncture (LP) with intrathecal chemo,  an optomology exam to take another close look and take some pics of the back of his eyes, and a bigger PICC line inserted in his other arm with the smaller one taken out.

To support me, soul sister and best friend, Sonya drove up from Kingston (where she was visiting her sister and son) again to sit with me as as I waited. She has taught me so much about strength given that her daughter has had many health issues since birth and I have watched in admiration as she and her husband Jim have advocated tirelessly for their sweet daughter, Chasey. 

We had good news on the LP front in that once again they found zero lymphoma cells in there! So as I told my son, winning many battles on that front puts us in an excellent position to win the entire war.

I was also working with Canadian Blood Services to put together the promotions for a stem cell swabbing event that St. George School and Notre Dame High School are jointly hosting in Ollie's honor on March 5. I am grateful to Canadian Blood Services, Roisin Philippe and Mike Curry for making this happen and to Kelly McKibbin for the support (since she's done this before for her daughter, Hillary).

Also, last night our St. George Church hosted a prayer night for Ollie. Abby went "to represent the family" as she said, but Mario and I needed to be with Ollie after a difficult day of procedures and were sorry to miss it. We hear it was very who attended, a beautiful service and as usual our Abby impressed everyone with her strength, singing with the choir and taking softly to the little kids about what is happening to Ollie. Our deepest thanks to Monsignor Hans, Charity, Lindsay and Sherri for organizing the event and to all friends and community members who attended and prayed for our family. We are blessed to have you all as part of our "village". 

Today Ollie had a CT scan and tomorrow he'll have an MRI. We're not taking any more chances that those villainous lymphoma cells will hide now and so now we'll do full scans before every round of chemo. 

While he waited for the CT, Ollie played with Child Life Specialist, Meagan who produced moon sand and made him dig to find, feel and guess objects (he was really good).

A few days ago I tweeted a tongue in cheek tweet asking CHEO if anyone had seen Ollie's missing Llama. I had already checked with the OR and Recovery who knew nothing about our missing friend.

Funny enough, over the last 48 hours, everyone has retweeted it and started looking for either the original or a replacement llama. I mean people I've never met sending me messages offering to buy him new ones! Alex Munter, President and CEO of CHEO offering to buy him another if they couldn't find the original (no little detail is too small for him to help with!). Other amazing souls contacting vendors and Shoppers Drug Mart where we bought him, trying to locate another. Shoppers Drug Mart came through, saying that they had another that needed a home with a brave Lymphoma warrior named Ollie. The media contacted me asking if we'd do an interview about Llama. I talked to Ollie and we agreed as long as they would promote the upcoming stem cell swabbing event.

Around noon, Ollie and I were interviewed by CTV Ottawa News about the missing Llama Llama Blue Pajamas and stem cells...my boy was terrific. A born communicator (he was), he said all the right things with strength, conviction and vulnerability. 

I spent the rest of the afternoon finding Beyblades online for our little media mogul in gratitude and as a reward. 

This evening I was with Abby at her confirmation rehearsal. In the Catholic Church, confirmation is a big deal and is really about choosing to be a full fledged member of the church. In a strange way it seems pre-ordained that this year she has learned more about her faith and the strength of it, than ever before. She's actively practiced it as never before and she's ready to choose to be a full part of the church and is mature enough to do so. I am so happy that she believes so deeply and is on her own faith journey this year. I can't imagine her ever needing her faith more going forward in her life, but know that what she learns about faith from her brother's illness will shape her entire belief system from now on. Thank God the prayers are working. Keep them coming!

Family Day Togetherness

Happy Family Day! Ours didn't happen at our house as we had hoped given Ollie is still not well enough to go home, so we made the most of it, doing what we'd do if we were all at home. 

So we built magnetic structures, tried to figure out s free watched some movies (although squishy with four of us flopped all over)...

Binge watched our favorite series' online...

Piled on Ollie' s bed and snuggled, trying not to squish him, while Mario went to work to do a few things on the server while no one is around and to make up for hours missed with Ollie recently...

Read good books (Abby and Mommy read their own and daddy read one to Ollie)...

Abby's good book was recommended by her friend Ella who recently read it. It's about a girl whose little sister has cancer...

We ordered Lone Star and were simply together and it felt better. Abby actually wanted to be here today and that made me feel good. 

Ollie also felt somewhat better, but still  very mucus filled today, so they gave him suction to vacuum it out. He was also nauseous tonight with post-chemo cankers in his throat that really hurt. So he's been given pain killers, which stress me out because the last time he took opioids it caused breathing issues. So paranoid mom has asked them to put monitors on him again and watch them tonight just in case.

Tomorrow it's another lumbar puncture with intrathecal chemo, morphology will lol at his eyes and take pics at the back of his eyes while he's sedated and they intend to try to replace his finicky and small PICC line also while under sedation. Tired just thinking about it. 

Hope you got out and enjoyed your family day together. We're living vicariously through all of you, so let the good times roll.

Sunday, Bloody Sunday

Ollie woke early for an exciting online chat with friend Henry and his family who are also early risers.

After the chat, despite his happiness at talking to friends, he was still not feeling great and was intermittently ill today. He is neutropenic (neutrophils only 0.2...below the 0.6 minimum to not be considered a major risk for infection), and the $3,000 Neulasta injection (most covered by private insurance, but more on drugs in another future post) that we gave him yesterday to boost his Neutrophils slowly and steadily has not yet worked.

We also had another first today. Hemoglobin and platelets were too low, so Ollie had his first blood transfusion. It was pretty emotional for me. 

I explained to Ollie that his body needed blood with more energy and some amazing person we don't even know cares enough about people like him that they generously gave their blood so he and others like him can get it. I've given blood many times in the past but never really thought too much about what it really means to those that need it. A simple thing that reproduces so easily and rapidly in our bodies and saves lives, yet takes so little time to give. Thank you to whomever you are O+ donor. It made a huge difference to us today and I'll never take for granted the importance of any donation I make or any of us receive again. It IS in you to give (blood.ca).

While being transfused, a volunteer from child life came in to paint with Ollie to distract him. Once upon a time in high school I was a candystriper volunteer at my local hospital. Now I am grateful to others for doing same for my family.

That apparently wasn't enough mess and fun for one day, so they made slime (in bed!) as well.

In the afternoon, my best friend and soul sister, Sonya and my favourite honorary nephew, Cole came to visit from Chatham and Kingston after buying out half the toy store.

I spent a lot of time with Cole and his sisters when they were little and it made my heart sing to see him spend special time with my son (his sister Carson sent a beautiful care package last week, too!) today as they bonded over a shared love of Lego. He also told me he's registered for the stem cell swabbing in hopes he can help Ollie. This is the beautiful cycle of love. His mother loved, nurtured and mentored me first. I adored her family and tried to do same for them whenever I could even after I moved far away. Now her children are loving mine. My heart could burst.

Unfortunately Ollie started feeling unwell when they left and dear friends Maria and Toni arrived to support and feed me (they are among the most generous women I know and I am so blessed that they are loving us). So as usual these two strong women fed me, comforted my son, encouraged and coaxed him to take medicine orally with me and cheered when his blood transfusion was complete.  I was so happy to have them here helping and celebrating every milestone with him.

Mario arrived at end of day after having to work today to catch up on a lot of work missed last week when Ollie demanded his presence so often. Naturally we've already used up all possible leave at work between pre-diagnosis testing and the last 3 months of chemo. So his employer is being flexible, but he still has to get the work done. It's a lot of pressure on him to work, hold down the fort at home for Abby and try to be there for Ollie and I, too. I married a very good man whose heart is enormous and would do ANYTHING for his family. He is a terrific father and partner.

Abuelita (grandma) also stopped by unexpectedly today with things to entice Ollie's appetite today.

It was an unexpectedly busy day and I think we overdid it, but it was lovely to see everyone. 

So he's sleeping now and I should be, too. Notice his very rosy cheeks, not from illness, but the blush of new and energized blood from another angel sent by God to help us. Bless him/her/them.