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!