Together at last!

I was going to keep you all in suspense until later in the blog, but I'm just too excited to tell you...we've busted out! Discharged on Day +34, baby!!! Back to our rented condo in Toronto for the next month and if all goes well we'll be back in O-town before end of September! 

But I'm getting ahead of myself...getting to this point alone was eventful this week.

To encourage Ollie to eat, drink and basically be normal over the past few days, they began reducing his liquid nutrition (TPN) and fats (Lipids) and disconnecting him from his IV lines for several hours daily. He was pretty psyched to move around unencumbered, but not thrilled to be eating as so far nothing but dill pickles and chicken noodle soup tastes good to him. 

We worked on drinking water and juice and physically moving a bit more.

We made some crafts...first up was this sign that he insisted on posting on his door...

The dedicated child life specialist, Madison answered the call as always and came to play a couple of days.

Next up on the crafts was bracelets...Ollie asked me to help him find the letters to spell out...

Team Ollie! And then he made one for each of his front line team...so Mommy, Daddy and Abby all have matching ones.

He was happy just to be able to sit on the day bed (where Mommy sleeps) instead of his own and to actually wear a hoodie because he wasn't hooked up to tubes on his arm.

Yesterday he was so excited about the day's plans that he woke up at 5 am completely ravenous and wide awake. 

So chicken noodle soup for breakfast! And earphones and a movie after so mama could sleep a bit more!

This was why he was excited...Abby had been granted approval to come and visit thanks to the Patient Assistive Care Team (PACT) advocating on her behalf as the sister and his donor. They've been apart for 5 weeks now and it's been hard for both as her lifesaving stem cells fought inside of him to graft and become part of him. At a time when they're more connected than they've ever been they could not be together. All that was ending yesterday and he was over the moon to see her.

We all spent the afternoon together, reunited and so so happy. 

We played Nintendo Switch games, talked, danced, watched an Ollie rock concert, and just generally were silly together.

I loved that our nurse, Corie just took it all into stride and happily worked around us because she knew it was a special time.

Abby and I took a bunch of his stuff back to the condo last night as they had told us Ollie might be able to go home on Sunday! 

This morning at 7:30 am the boys called us to tell us he might NOT be able to come back today. His magnesium levels were low because  his Tacrolimus medication (immuno-suppressant to avoid rejection of the transplant) can have that impact. I told them that the pharmacist on the Bone Marrow and Stem Cell Transplant Unit had told me on Friday that he'd likely have to take a supplement and we'd know how much based on tests this morning. 

A couple of hours later they called back to say they were giving him a magnesium infusion and after that should be able to be discharged.

Abby and I had been frantically cleaning the condo to ensure bedding, surfaces, bathrooms, kitchen and floors were bacteria free before he came back.

Finally, we went over to get the boys. Daddy moved what was left down to the van. We had a dressing change...another shout out to nurse Corie who was so patient with Ollie and let him help to safely remove his own dressing which is normally traumatic and painful for him. 

Then Ollie wasted no time getting shoes on (his first time wearing regular shoes since May as his feet are no longer swollen!!! Stem cells are amazing!) and determinedly walking to the hall to get into his wheelchair to get out of there. 

The nurses hooted and cheered while he left including some of our many favourites like Jenn (the lovely charge nurse who suggested signage to identify Ollie's blindness to have people help him better), Corie, Liz, Lilla and Emily (sorry that we didn't get to see others like Cherie, Ayisha and Hailey). We are grateful to all of the nurses, doctors, child life specialists, the music therapist, art therapist, Clowns A. Lebut and Fern, Fred the chaplain and the entire PACT team. I was in tears leaving just thinking about what we were leaving with and all we had to get through to get too and complete this part of the journey. 

One of the nurses a few nights ago asked me about Ollie's blindness and I explained to her (the Cole's Notes version of ) all that had happened to my unstoppable lymphoma warrior over the past year. She was incredulous after and commented that they as nurses on this unit often forgot that the cancer kids have had so many trials and tribulations before even arriving at transplant. 

Getting back to the condo (after I went to the pharmacy to pick up his 9 meds and supplements), Abby was overwhelmed and hangry and arguing a bit with Mommy and Daddy. Ollie comforted her and insisted we needed to give her space to feel more in control. He's learned a lot this year about emotions and how to handle them.

About an hour after being home with us and eating a bit of pasta, Ollie took a nap.

Abby did stone of her own art therapy...

And when he woke up a couple of hours later be willingly ate some hummus and pita and drank a juice box, proving that the doctor was right and kids federally eat and drink better at home. Normalcy. So simple and so underrated.

We still have to go back to clinic tomorrow and Tuesday mornings for bloodwork as they may need to adjust his dosages to ensure the meds all work optimally together, but that's a small price to pay to be together at last!

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.