Fake it until you make it...

While his smile is not yet genuine, he's trying...

Ollie slept a lot today, but did have more moments of lucidity and being able to talk to really talk to me. It started at 4 am when he woke and asked me for a hug, then asked me calmly why he couldn't see. It was the first time he hasn't cried out in agony about his loss of vision. 

He did still sleep a lot today, but his pain was lower, he was able to articulate what he needed and got up to use the commode. So he's getting stronger and a bit better. 

Better was enough to be transfered out of ICU and back on to the oncology ward. Not well enough yet to see, have normal conversations all of the time or feel comfortable yet. He is still on a lot of pain medications, but they took the catheter out as he's started eating soft stuff like yogurt and bananas.

Mario's mom stopped by the hospital, but we missed her as we transitioned from one ward to another. Stephen was also kind enough to come by and bring Ollie his favourite strawberry banana smoothie from Tim Horton's. He stayed to visit with the boys while I ran off to meet Abby.

Mario is there with him tonight and the breathing issues aren't 100% resolved yet, but he is also exhausted today.

I took Abby to an info session tonight at one of the middle schools she is considering going to in September. After we went out for food with other families from her current school. It was nice to catch up with them a bit, but also hard not to get distracted by texts from Mario. 

Now I am lying in our bed with Abby snuggled up on one side and Chewbacca the cat nestled on my chest, purring away. 

His regular round 3 of chemo is expected to begin tomorrow and another lumbar puncture is scheduled for Saturday with inter-thecal chemo in his spine.

So your prayers are working and please keep them coming. Hoping for an even better day tomorrow!

A "Quiet" Day

It's been a pretty quiet, stable day. That's a good day right now and we'll take it.

Ollie slept much of the day with little pain after a rough night of breathing issues. 

Mid-afternoon he had another lumbar puncture (his 5th so far, with 4 in the last 12 days) to remove the extra cerebrospinal fluid that is adding pressure on his brain. This time it was less than the previous two times, so this was good news. They also gave him the inter-thecal chemo inn his spine. I told Ollie there is a war in his brain between the chemotherapy warriors and the lymphoma villains and the warriors are winning so far, blasting the lymphoma out.

Neurology came by and said his EEG shows that he does not have epilepsy, but there is irregular activity in his brain and it is evident with his blindness that there is more to figure out.

Acute Pain Services added Melatonin to his orders to try to jeep him sleep better. Hoping that works tonight. 

Dear friend, Toni came to bring me delicious dinner and all the news from St. George.

All in all a simple day (funny that a simple day now includes a lumbar puncture).

Home Again, Home Again...

We are home from CHEO! 

We got home Friday night after an uncertain afternoon where doctors said Ollie could go home if he felt well enough, yet didn't feel great after chemo. So we waited longer than expected to see if we could leave while he took more anti-nausea meds and rested longer. 

In the end he desperately wanted to go home and although we felt that it might be better to wait overnight, with the assurance from the doctors that we could give him the two anti-nausea meds orally at home as needed, we went home.

Julie visiting us in hospital.

The chemo was a different "cocktail" than last time and tougher than the last round on him mentally and physically so he was nauseous more than last time. 

We did have a better week mentally by not escalating his negative feelings and working on understanding what he can control versus what we can't.

He didn't feel great last night before bed and had to take meds. I slept with him and he slept okay, but woke feeling sick again so he spent most of the morning in bed with Daddy watching movies and by noon was well enough to come down and eat and watch movies on the sofa.

So today was a pj day for us all. Abby and I worked on her geneology project and I also took down and packed up the Christmas decorations. 

So we're all happy to be home and to have about 3 weeks here before round 3 with only 1 weekly appointment at CHEO for blood work and PICC dressing changes. 

Thanks to all for the positivity and prayers during round 2!

Round 2 Chemo - Ollie vs. the PICC line

 Round 2 Begins! I feel like we should get the makers of Rock 'Em Sock 'Em to sponsor us knocking lymphoma out!

Ollie wearing the awesome hoodie friends Tash, Alan and Oliver sent him as he starts round 2 of chemo today.

The morning dawned, dark and  slippery. Naturally we'd be starting round 2 at 7:30 at CHEO during a freezing rain storm. I guess it kind of fit Ollie' s mood of yesterday. All weekend long he had been lovely having great visits with the Navas (he had a blast cutting Stephen's hair off) and the Foxes. Visits with them made the holidays feel more festive and made us all feel more like our old social selves.

But by yesterday again we had fighting from him about going back for round 2. At his refusal we had to give him the tough love and explain that if he gets the chemo he'll get well and live a long and happy life, whereas if we don't take the chemo it is certain death. Pretty tough stuff to lay on your 7-year old, but we've promised not to lie to him through this journey. It was upsetting for all of us (Mario, Abby and I) to have to explain to him why we need him to live. Conversations you never thought you'd be having with your 7- and 11- year old children...

After tears and anger we talked about how to make CHEO less boring. We agreed to take more of his own toys with us this time including Beyblades of course, the Nintendo Switch, and favourite mini board games. With one more bag added for toys Mario swears that it looks like we're going for a month, but Ollie and I like to be prepared for anything. If it sparks joy, right?! 😉

So we got to Medical Day Unit safely and on time today and began the waiting. Mostly waiting for a bed on 4 North since by 9:30 we had blood tests done and the doctor had confirmed that his levels were great (Neutrophils up to 1.8!). By 11 am Mario was complaining and shortly thereafter, Ollie was, too. I reminded them both that Ollie and I had waited 5 his in an Emerg isolation room the week before while we waited for a bed, so it can take time to make room for new patients. Naturally Ollie got progressively grumpier. 

Of course by this time his PICC line was distantly getting kinked each time he bent his elbow and this would set the alarm off on his pump and stop the flow of the ton of fluid they were trying to get into him before chemo. Finally the VAT team showed up to change the dreaded PICC dressing again (see Friday's post for more of that torture) in hopes of fixing it.

We did get a bed after that (about 4.5 hours after arriving), but the PICC continued to cause issues all afternoon. Finally the next shift of the VAT team came on and the expert veteran who fixed the issue with wine ingenious engineering with stern strips the first night of round 1 fixed it again. No further issues, thank God! So chemo stated very late and finished after almost 4 hours just a few minutes ago! 

In the meantime we had an ordering mess up with Gabriel's Pizza (which Abby and Daddy profited from since the order got sent home instead of to CHEO!), reordered and finally ate. 

Maria and Micheline (affectionately named Aunt Squish by the kids on a Tremblant trip we all took together last summer) Cinquino were so sweet to come by despite the rotten weather and bolstered our spirits after a hard day. Ollie even taught Maria how to Beyblade! 

All in all a tiring but successful day. He remarked tonight that we only had 4 more days of chemo this week and maybe one day after that before we get to go home on Saturday, so the positivity we are shooting for is coming along, even if I'm dragging him into it kicking and screaming at times.

Thanks for all of your well wishes for round 2. After this we'll be 1/3 done treatments! Until tomorrow...

12 Days BEFORE Christmas

I have been trying to post all day, but we've been so busy! I will post more when we have time, but tomorrow Ollie and I are being admitted to stay at CHEO for 12 days for his first round of chemo. I will share more details soon, but we send our love and gratitude to all of you for your love and kindness. 

Here we are at CHEO today building a Mousetrap while we waited for tests.