Birthday Blessings and Woes

Yesterday was an insane day filled with a roller coaster of emotions. It was Ollie's 8th birthday and in the end that made it a good day, but there were several stressful and sometimes sad moments for us. I'll get to the stressful and sometimes sad stuff later, but first the good stuff...

People were overwhelmingly kind as always, dropping by goodies, cards, gifts, honking their love for Ollie as they drove by, sending a ton of online messages for him and making donations in his honour to Make A Wish Eastern Ontario (also in support of their Great Make A Wish Campout happening this weekend) to support the wishes of brave kids battling unfair illnesses like Ollie and our friend, Hillary McKibben. Thank you for always loving my kids and showing up when we need you.

At one point, Abby and I were on the porch talking to friends on the sidewalk when a man walked by, stopped and told us he had seen Ollie's story on the news. He said he makes balloon characters and could he put some in our front yard for Ollie? Turns out Brad the Balloon Guy is our neighbour a few doors down! How kind!

Later that evening, dear friends Casey, Maria and Sofia (who have been running our meal train for the past 8 months and doing ANYTHING we needed them to do) brought over the cake that Sofia had made for Ollie and joined us in a socially distanced celebration. Ollie was thrilled to have them and especially to show his NERF arsenal to Casey who is an officer in the military and a fountain of munitions knowledge. Ollie adores being part of interesting conversations with adults and his incredible brain retains so many technical details about things that he couldn't get enough details from Casey who was so patient.

Earlier in the day we got some gut wrenching news from another cancer, family that we have become friends with at CHEO. They've been told to prepare for end of life. Sometimes life is so very cruel. And so hard to understand why some get cancer and most don't. How some are saved and some are not. It's the part I constantly struggle with in my faith journey. 

Ollie heard the tears and wavering in our voices that morning and asked what was wrong. So we had to tell him on his birthday, the week he was told he is in remission and will get a lifesaving stem cell transplant, that his little friend may not make it. Ollie immediately did the sign of the cross and began to pray for his little buddy. It was beautiful and so sad. I was so proud of him and his faith despite everything he's been through, but also so heartbroken that this is happening. Their family has been in our hearts and our thoughts constantly since then, but we tried to go on and make the day as positive as possible for Ollie's birthday. Please say a prayer or send strength and positivity to the family of little M.

Later in the day we also opened presents Ollie was pretty pleased with everything he got. 

Ollie also got some lovely messages from Gabriel Pizza and the Ottawa Health Group (whom we miss dearly and will have a lot of work to do to fix my back after all of this!)

We had an online meeting with the Bone Marrow Transplant team at Sick Kids Hospital as well. It was good, but stressful. Abby sat with Ollie while Mario and I were in the meeting, but moments before both kids had been upset and crying...just a reaction to the stress that we can all feel surrounding us right now.

They can't start Ollie's radiation at Princess Margaret Hospital until July 14 because they don't have a bed for Ollie in the Bone Marrow Transplant Unit at Sick Kids until then. So we need to be in Toronto for this Friday, July 6 for the radiation planning, will have a few appointments and tests there the week of July 6, but the next big step starts July 14. Three days of two sessions of total body radiation daily, followed by two days of chemotherapy. Sunday the 19th will be a day of rest and then he gets Abby's lifesaving stem cells on July 20. From that time on Ollie and I will be admitted until he grafts, his new immune system is functioning (about three weeks) and he is strong enough to be released to stay nearby for about a month (about 6-8 weeks after transplant).  

The hard part is he'll be really sick again, likely lose a lot of weight (thank God he's fat from the steroids), have the mucusitus (mouth sores) again and just generally feel awful after being so well these past weeks. It's really hard to regress in order to ultimately progress and be cured. 

And of course, there are no guarantees. Thankfully, they are splitting Abby's stem cells in two because they have so much (thanks be to God and our overachieving daughter), so if the first transplant doesn't graft we have a second chance ready to go. 

But there are so few cases like Ollie's to base his treatment on (he himself is already part of several case studies because of his unique situation). Thankfully Dr. Ali is open to consulting with doctors of the few other families we have found around the world in similar situations. We are grateful to all of them for sharing their experiences and giving us hope.

Mario and I were sad after the call because we know how sick Ollie will be again and it's painful to have to choose to make him sick again. We also know we need to do this. We fight as one. It will be hard, but we can do this and finally get him well. It's his best chance at long term survival. Naturally we are also concerned about the timing. We don't want to wait too long and risk relapse again. The doctors are very aware of this, too. 

The few days before yesterday were also busy. As the kids wrapped up their school year online, I was planning to move our life to Toronto for at least the next 2-3 months and thankfully found a condo nearby as Ronald McDonald House needed us to be inpatient at Sick Kids for at least two weeks to be considered there. Thankfully the Pediatric Oncology Group of Ontario (POGO) is helping families like ours by paying for up to $100 per night towards accommodation as a result of COVID and difficulties getting into Ronald McDonald House. Between that and the generous gifts of cash we've received from so many friends and family, we are able to have a place to be together for the two weeks before transplant and a place nearby that is safe for Mario and I to swap places (as safety allows) for each of us to see the other child. With all of the stress we already have, we appreciate not having to worry about money right now despite my reduced income. People are overwhelmingly kind to us.

Ollie was so tired in his final class meet that he fell asleep for part of it, but was happy to wake in the end and wish his friends a happy summer. His teacher said a beautiful prayer including an intention for Ollie's stem cell transplant to go well and that he'd be healthy and back with the class next year. His class has been unwavering in their efforts to include him all year and let him know how much they love him. We couldn't have asked for better for him and are so thankful for the entire St. George community.

Abby's last class meeting was also bitter sweet. She has received so much love and compassion from her classmates, friends and educators this year. Her teachers, the principal and everyone at St. George have wrapped her in their love (even from afar during COVID) and taught her so much about kindness and selflessness this year. I also got a beautiful message from her teacher telling me how much she had learned from Abby's resiliency and bravery this year. This is the power of kindness and of mentoring. The mentee often teaches the mentor as much as the mentor teaches them. 

We take all of the St. G community, our friends and family with us in spirit as we go through the next step. Six months from transplant when we have a green light for him to be in public again (or whenever COVID is no longer am issue), you're all invited to the biggest party around and I have talented friends in event planning who have already come forward to help us put it together.

I am not sure how much time I'll have to blog over the next few days as we have a ton of pre-transplant tests at CHEO with Ollie, need to pack and ready to go, but promise to blog when I can. Thank you for continuing to follow along with us. We feel your strength behind us, propelling us forward to a cure. 

Present Time

"There's no time like the present and,

there's no present like time."

I feel like we're racing against lymphoma. Our CHEO oncology team called this morning and told us Sick Kids Hospital agrees that things look better than last time and Ollie needs that transplant NOW. They will confirm tomorrow after conferring with Princess Margaret Hospital (where we'll do the radiation), but want him in Toronto and ready to do his total body radiation starting Wednesday potentially. They don't want to take the chance that he'll relapse again. 

I knew it would happen fast, but this is warp speed compared to last time. It's good, just stressful to find a place to stay and prepare to pack up our life for 2-3 months in Toronto in only a few days. Thankfully I am an expert planner.

While we're all happy that he's in remission again and going to get the transplant finally, we are also scared. We've all had our moments today breaking down while we processed the monumental thing that is now going ahead so rapidly. This disease gives you no time to adjust before everything changes again. Late this afternoon we all went to Toys R Us for a curbside pickup (a little safe retail therapy for the kids) and to McD's for a drive through ice cream. Just being together driving was calming and centred us again. We fight as one and we win as one.

We are grateful for the gift of the last few months at home to recharge, especially June which has really been our summer together. Since Ollie and I are about to spend a lot of time inside a hospital room, I have to think God gave us the beautiful weather He did to ensure we didn't feel cheated out of an entire summer, too.

I am working with our Pediatric Oncology Group of Ontario (POGO) Interlink Nurse to see what options exist for accommodations this time as it appears Ronald McDonald House is open again, but were also looking at renting a condo again just in case. Thankfully we all get to be close to each other and in the same city over the next two months until we know what is happening with school for Abby in September.

Back to the subject of radiation, thankfully they don't need to do more brain radiation, but he'll have three days of total body radiation with two short sessions daily. They'll do the transplant within a few days of that. The fact that they can use his double lumen power PICC to do the transplant and won't need the Broviac central line put back in his chest is excellent news and makes me feel we made a great decision to take it out to make him more comfortable when we got back to Ottawa. 

Some scary news is that as soon as we have a solid date to start radiation, he has to stop the miracle drug Lorlatinib as apparently it in combination with transplant can put too much stress on organs and cause death. This means he'll have no treatment until he starts radiation. Evidently also the main reason that they want him there immediately to start radiation and hold the lymphoma back that way. 

We're not fearful of the radiation now that he did 13 sessions on his brain and came out the other side well. We do know that this time they'll make him aplastic which means they'll wipe out his entire immune system, his vaccinations and any ability to fight off infection. This is a nightmare anytime, never mind during a pandemic. Once his immune system is gone, he needs the transplant to survive. And we're not certain that Toronto going into Stage 2 of COVID-19 with some restrictions lifted actually makes us safer in any way. 

Thankfully Abby's frozen stem cells are waiting and if need be, she can donate more. For her graduation one of the gifts we gave her was a necklace and pendant. The pendant (another beautiful piece from Sonya Roe Jewellers in my hometown, beautifully chosen by my dearest friend) has her name on the front and on the back it reads, "2019-2020  Grad, SC Donor, Hero". We did this weeks ago before we even knew for sure he'd get her stem cells, but wanting to acknowledge this amazing gift in an extraordinary year. This will be the beautiful completion of her lifesaving gift. The best present she'll ever give any of us.

Speaking of presents...This is an even bigger week for our family as Friday our Ollie turns 8 years old! He was a gift when he was born and his remission and survival was the wish I made on my birthday 2 weeks ago, so he's the gift that keeps on giving.

Given COVID, we can't have a real party yet, but we know Ollie would appreciate your online wishes, cards, drive by honking and any little bit of attention you have time to send his way on Friday. He seriously needs NOTHING but a transplant (and maybe a pair of size 5 Crocs if anyone knows where I can find some!), and you've all given him so many beautiful gifts already! Little gestures would be lovely to make his day special. Sweet friends Henry, Dylan, Erin and Ben took time today to stop in for a quick pre-arranged socially distanced visit to celebrate his birthday and he was thrilled. 

This will truly be his last opportunity for any real interaction with friends before transplant, so while we need to be safe, we also want him to have all of the love and attention that the bravest of lymphoma warriors deserves before his biggest and hopefully last battle in this war. You've made him feel so loved and remembered these last 8 months and he's having a hard time with the idea of having to go back to stay in hospital to feel bad again for another 6-8 weeks. 

So we ready to go into battle and Ollie has added to his Arsenal (at least his NERF one) today thanks to early birthday money from family. While the NERF munitions won't really help us in this next big battle, if it makes him feel stronger and better prepared to fight, it's worth it.

Signs, Survival and Winning Battles

Every time we go to CHEO we pass Cancer Survivor's Park. Before cancer (what we refer to as BC these days with no disrespect meant to Christ Our Lord) I always thought this was a strange place for a park given how busy this intersection is.

I never understood that this was a gateway for Cancer families. Both a beginning and an end to their cancer journey in a way. You pass through on your way to the Ottawa Regional Cancer Foundation (located just behind the park), the Head Office of Canadian Blood Services, CHEMO and The Ottawa Hospital with it's Cancer Centre. You can also pass it on your way back. 

The sculpture is by a Mexican sculptor named Victor Salmones and is entitled, "Cancer: There is Hope". The piece features eight life-size figures passing through a maze depicting cancer treatments and success. The most prominent of these is at the front of the park, emerging from the maze with the parents looking determined while relieved and the child looking carefree and happy. 

As we travel further down Alta Vista Drive towards the hospitals, the sign in front of Canadian Blood Services ALWAYS flashes, "Stem Cells for Life" at me as I pass. 

Until Ollie had cancer I missed a lot of signs. Like he says, now I can see the light while he lives in the darkness. Now I try to read the signs for both of us.

So all signs have pointed to him being better and I desperately wanted to see those signs, but worried I was misinterpreting them or reading too much into them.

Turns out I wasn't! 

REMISSION!!! WOOHOO!!! GOD IS GREAT (and so is science!)!!!

 

The lumbar puncture showed no lymphoma cells in his cerebrospinal fluid. The MRI shows that the lymphoma lesions that were on the lining of his brain are gone and there is no evidence of cancer anywhere. While his optic nerve still looks inflamed,  they believe it is due to it continuing to heal and said it looks better than when we last went to Toronto in remission. In our Ottawa oncology team's opinion the Lorlatinib and radiation worked and he is in remission! They've sent our results to Sick Kids Hospital in Toronto to get their opinion on next steps but are recommending stem cell transplant as soon as possible. 

We should hear about next steps in the next few days. Assuming Sick Kids agrees, we will likely be headed there for stem cell transplant in the next couple of weeks. Second time WILL be the charm for us and he'll finally get Abby's selfless stem cells and her strong immune system with them.

So there was happiness here tonight, although we're cautious because we've been here before on the brink of a potential cure, only to have it ripped away from us at the last minute. Abby and Mario really want to downplay things until he is fully cured. 

Ollie and I have spent the most time in hospital, in the physical and emotional reality of this disease day in and day out. We're going every battle together and forced each other to keep going no matter what. That's not to say that Abby and Mario haven't felt all of this deeply, but I sat in ICU for a week with my son when he was seriously on the precipice of death (while Mario and Abby were ill with the flu and couldn't come to the hospital), begging God to save him. I know too well how lucky we are to have made it back from there and to have this second opportunity at getting him the transplant. The foremost expert in his disease in Canada honestly thought this was a long shot. 

So we'll celebrate this victory (our Ottawa team says it is a BIG victory and how amazing Ollie is to have gotten here) even if only by being silly together tonight, playing games and watching Ollie gleefully (blindly) driving his remote control car around the house. 

The Lorlatinib is proving to be a miracle drug for us and another family we have connected with in the UK whose daughter is on it too and got her transplant almost 4 months ago. Remember that last time he had only been in remission for about 5 weeks when he relapsed. It's also the extra insurance that we may need to keep him in remission this time until we can get the transplant. 

Thanks to all of you for nurturing us through all of this. We haven't won the whole war yet, but this was an important hill to capture. This hard fought battle has turned things in our favour.  Thanks be to God and all of you for helping us to get here!

We'll keep you posted as we know next steps. Please continue to keep us in your thoughts and prayers. While this is all honestly miraculous in many ways, and I hate to be greedy, the real miracle we need is a successful transplant. Let's hope Sick Kids agrees.

Anticipation vs. Anxiety

Today's the day. The day of Ollie's MRI and lumbar puncture to determine if the Lorlatinib drug and radiation are working. I am, as Abby would say, "excervous". Excited that the day has finally come and our agonizing wait is nearly over, and nervous about what they will find. 

In all fairness, I shouldn't feel too nervous as I am certain that the new treatments are working. Oliver is happier, healthier and more active than he has been since he became very ill and was in the ICU in January. His attitude is better, his sense of humor is on fire these days and he's determined to do things he used to. 

Over the past week he's gotten physically stronger and insisted on walking more and even going up and down the stairs by himself (with a paranoid parent nearby to catch his fall if needed!). He hasn't climbed the stairs on his own since January. 

He's embraced the Braille learning and is now teaching Abby and Mario. He learned the first five letters of the alphabet in Braille in about 15 minutes last week during his virtual lesson with Leona from the Canadian National Institute for the Blind (CNIB). She laughed and said we'll learn as many more as he, wants to next week, but told me after that he'll have them all down within a couple of weeks with his quick brain. 

This is an enormous relief considering they tell you that radiation can cause learning disabilities, but all we've seen so far is that his intelligence and quick wit have returned! He's even doing significant math in his head and learning multiplication! 

We struggle sometimes to find a balance between letting him do normal, physical things and getting him to lie down and rest. His ankles get swollen and his lower back starts to hurt if he sits up or stands too much. They're also looking at his spine today in the MRI to see if he has a compression or fracture, which is apparently very common in kids who have had chemo.

He's still annoyed that he has to cover his PICC line to swim, but there have been several days where he's gotten past this and happily floated around our giant kiddie pool.

Last week he also surprised us by insisting he could play like a normal kid in the pool on his own and did this...

 This may not seem like much, but for a cancerous blind kid whose balance and fear have prohibited him from even bending down to pick something up off of the floor, this is unparalleled. He then stood up confidently and stably and was so proud of himself. So were we.

Even little things like feeding himself soup are getting easier.

He got an exciting present of a favourite treat from sweet friend Sharon who has repeatedly sent lovely and unexpected treats to my kids over the past 8 months.

He also participated in a grade 2 scavenger hunt and his thoughtful teacher, Mrs. D sent me the list of items ahead of time so Abby and I could gather them and Ollie could just search in a basket to make it physically easier for him. Fenton family note that he used his Octopus that you sent! Thank you!

Abby's Virtual Graduation was last Friday. It was bittersweet. Picking up her grad kit and not being able to hug the amazing educators who have supported our family like never before this year felt awful. Abby was upset all morning. Add to this a call about a family member who was injured and had to go to hospital and the stress was palpable here.

When the time rolled around to watch the virtual presentation, Ollie wanted to watch, so I narrated what was happening for him. Naturally Mr. Inquisitive asked a million questions. Abby got upset at him and uncharacteristically lashed out at him saying this day was the only one about her and she needed quiet. He got mad and cried saying he didn't ask for cancer and couldn't help that he was blind and wished he could just be normal. By this time all three of us were crying. Some days no matter how much we want to be positive right now we just get caught between cancer and COVID. 

When we all calmed down we hugged it out and then sat down to watch the rest. It was as lovely as could be under the circumstances.

Abby was awarded the Kiwanis Club Award, which is generally given to recognize positive attitude, dedication and commitment to one's community. She also got a medal for Character. Both very fitting for our girl, especially this year given all she's done to donate stem cells for her brother.

While we've waited for today to arrive, we've had some fun. We had our own CHEO Teddy Bear Picnic last weekend since they couldn't hold their annual event.

Ollie begged us for the game Pie Face and we stupidly agreed to buy it. 

It was actually worth it for the laughs, though. 

Again and again Ollie got pied, but loved it.

We parents...not so much.

The MRI and Lumbar puncture (to check if there are still lymphoma cells in his cerebrospinal fluid) went well today. Now more waiting on results. Might take a few days and we'll share when we can. So being the Momcologist that I am now, I am confident that we will hear good news and either be in remission and on our way back to Toronto in the next few weeks to finally get Abby's lifesaving stem cells, OR see a significant reduction in the number of cells and lesions and stay the course on the Lorlatinib for a bit longer to get there. Honestly he's been SO well that it is impossible that he isn't kicking lymphoma's butt right now. 

So please send those positive wishes and prayers our way asking for the news we deserve. This kid has fought so hard to be a contender and it's his turn to win. Love to you all and thanks for your patience as we wait for news and next steps!

Gifts to Give Families Battling Cancer

People are so kind and generous that I get asked constantly what people can do or buy for us. We've been overwhelmed by the giving, actually. So here are some suggestions of things to buy for a family with a kid with cancer (please note we do not need these things as we've already been given them). Many of these suggestions would likely be equally helpful to adults battling cancer:

- Medicine organizers: one big one for the patient and one smaller each for the family members for their vitamins and immuno-boosters

- Grocery staples or a gift card to stock their pantry or freezer

- All purpose tote for hospital with favourite snacks, drinks, etc. 

- Safety aids or gift certificate to purchase some (e.g. Shoppers Drug Mart Wellwise, Amazon, etc.)

- Gift cards: Grocery store gift cards, Tim Horton's, Starbucks, Restaurants with takeout, Indigo, Amazon, Shoppers Drug Mart or Rexall (for vitamins, supplies, mobile aids, etc.), Gas, Google Play (online movies, apps, games, books), Cineplex (online movies to rent or purchase), Uber Eats, Door Dash, Skip the Dishes, local favourite specialty shops (e.g. Merry Dairy), etc.

- Online subscriptions: Audible for books, Netflix, Prime, or anything they might be into. 

- Cook for them: Start a Meal Train or join one organized for them. When we were in hospital continuously for 2 months this was a Godsend for us all. We had no energy to cook and were mostly eating fast food at the hospital when we weren't being fed by friends and family. Freezable foods are best to ensure no waste.  

- Pajamas, robes, slippers for whole family: comfort is needed and for those that will be at the hospital often, these are helpful. Ask the family for sizes if needed or buy someplace easy

 to exchange.

- Sleep and relaxation aids: Sleep masks, melatonin, Magic Bag, essential oils, humidifier, etc.

- Gift cards for Kids clothing stores (Children's Place, Carter's, Old Navy, etc.): Ollie has gone up two sizes due to the steroids and we've had to unexpectedly buy a whole new wardrobe quickly. You also need things you didn't plan for like all of a sudden muscle shirts to accommodate PICC lines and such

- Toys, Games, Puzzles: Small, tactile toys and things that can be used to entertain in a hospital bed: Magnetic tiles for building, Lego sets, Lego Mini figure blind bags, Fidget spinners, Putty, Brain teaser puzzles, Mad Libs, Comics, Fart boxes and noise makers, mini versions of games (Rock 'Em Sock 'Em and Mini Battleship were faves with ours), etc. If you know the child's passion (e.g. Beyblades), contributing to their collection is totally appreciated!

-Donations: Make a donation in the child's honour with a charity that will be helping the family. Our faves are:

- CHEO

- Candlelighters

- POGO

- Canadian Cancer Society

- Katelynn Bedard Bone Marrow Association

- Canadian Blood Services

- Make A Wish Canada

- Cash: while in general I have not been a fan of giving cash as a gift in many situations, I must admit that we have been grateful for the Go Fund Me campaign, the donations from families at Ollie's school and the individual cheques that have arrived in our mailbox unexpectedly. At a time when we'd ordinarily be even more stressed due to loss of income given I'm on EI making about 40% of my wage, we've been so thankful not to have to worry about money, too. Especially when it cost us an extra $4,000 a month in Toronto for the failed attempt at the bone marrow transplant and will be same when we go back again to finally get it! Cash enables cancer families to use your gift on whatever they need, and things do come up. From equipment like wheelchairs and handrails to a new washer and dryer when it conked out unexpectedly during round two of chemo, big unexpected expenses come up. 

- Other Personal Gifts: We've also received so many thoughtful gifts like stuffed Llamas when Ollie lost his, beautifully made blankets, PICC covers, religious icons, rosaries, books, etc. A personal, thoughtful gift is always appreciated.

Thank you to everyone who have been so incredibly generous with your time, money and emotional investments in our journey. When Ollie is well and COVID is over, we are planning one heck of a party and you're all invited to celebrate our collective victory!