Chemo Consequences

We've been home for a handful of days now and trying to settle into some sort of routine. For both of the last two rounds of chemotherapy Ollie has been nauseous for three days after the treatment. This time despite taking two anti-nausea meds he did throw up several times and had a lot of heartburn. So we hunkered down and cancelled plans last weekend for a few close friends to welcome him home and just rested, watching movies and sharing family information with Abby to inform her genealogy project. More on genetics another time, as there will be genetic testing at CHEO for us eventually.

Watching movies in his new bunk bed.

 Abby planning out her genealogy project.

Recharging was needed for all of us really. It was like a reentry into family life together after a mission apart. 

Abby did go out skating on Sunday with friends, which was perfect because we had to cancel another playdate due to the fact that her other friend's family had just had the flu and we couldn't risk exposure for Ollie' s sake.

 Abby and friends skating.

Naturally Ollie was upset that his sister got to go skating and he couldn't. This is always hard...balancing Abby's social needs against his inability to be among age appropriate friends right now and the perception that one gets everything and the other gets nothing. So Abby sweetly promised to do whatever he wanted when she got home (they had an indoor snowball fight) and I promised that when he felt better and was strong enough I'd take him to an outdoor rink to skate.

Monday we were back at CHEO for blood tests (his levels were pretty good considering he'd just finished chemo) and a PICC dressing change. 

We also got to witness our first real bell ringing. The bell is rung by the patient after their cancer treatments are all done. It's the biggest deal around for a cancer patient. The custom originated at a Texas hospital in the 1990s when a former naval officer wanted to ring a bell at the end of his treatment as a symbol of "getting the job done" as he did in the Navy and it has caught on all over the world today. Although there are many who feel it is unfair to those who will never finish their treatments and others still who feel it adds anxiety for some patients, by and large it is still practiced and as a parent of a kid who has cancer, I think it's beautiful. It's a rite of passage and with every step being so hard on this journey, you need milestones and celebrations to look forward to along the way to keep you going. 

We had seen everyone waiting for a patient to ring the bell on Ollie's first day of treatment, but this time we were able to stay and watch 6 year old Aidan (who had been having treatment since he was a baby!!!) ring the bell with much excitement and joy from the CHEO staff. In fact when Ollie was getting his blood test just before the bell ringing, the seasoned nurse asked him to be his most cooperative self so she wouldn't miss the event because they'd all treated Aiden for years and wanted to celebrate with him. His mom was overwhelmed with emotion and gratitude and Aidan was almost levitating with excitement. So I cried for a family we'd never met before because we now have a glimpse into what their life has been like for 6 long years. Later, Ollie showed Aiden and his sister how to play his Nintendo Switch and told him how cool it was that they were all done with cancer.

Tuesday we had lovely last minute quick visits from friends Sarah and Charity who brought books and games to help keep Ollie occupied. We also got great news from Ollie's principal that a School Board paid teacher had been approved for a handful of hours each week to come to the house (since we aren't at CHEO enough in between chemo rounds to see a teacher there) to help him keep up with his class and even better news that Mrs. Cranston (Sherri), whom he had for the last two months last year when his teacher was on leave is available and agreed to be his teacher again. Ollie adored her, so this is the best possible solution to get him on track to be able to start back in grade 3 with his friends in September and not lose his grade 2 year. 

Also a bit of foreshadowing in that I had seen Sherri at school where she was substituting the day that we got our diagnosis while I was picking Abby up to tell her about her brother. Sherri hugged me and told me she'd be happy to come over any time and work with him if it helped. When the principal asked me if I had any preference in who they hired to teach at our place, it was a no brainer.

Sherri and I first met on the school playground when I was on mat leave with Ollie and she was on leave with her youngest daughter. Our older daughters liked to play together after school, so she has literally known him since he was a baby. Who knew how important she'd become in his life one day?!  I've said it before and I'll say it again...everything has equipped us for this journey. Also, St. George is an incredible community and we are so thankful to be part of it. Classes start next week and I can't wait! 

Today after the washer technician finally showed up for a service call on our brand new washer (long story and don't even get me started!), Ollie begged me to take him skating. He had been incredibly demanding and difficult the last few days (partly because of the steroids he takes during chemo) so I wasn't inclined to reward him, but realized he just desperately needed to get out for a change of scenery and exercise. There are so few low-risk things that you can do with an immuno-compromised child. So off we went to a local outside rink. On a weekday he won't be exposed to any viruses since there's nothing to touch without gloves and no close contact with people.

Post-chemo (4+ days after chemo) energy has returned and he was getting cabin fever and begged to go skating.

It was just us at the outdoor rink so we skated a bit and helped to clear the snow.

Post-skating slice of pizza.

Finally, we rested at home until Abby and Mario got home. After a delicious dinner from the Meal Train brought piping hot by another kind friend (we are so grateful for all of the meals you are bringing with love!), Ollie helped Daddy switch hoses on the new washer and held the flashlight. Mommy can finally start tomorrow on the mountainous backlog of laundry from the last 11 washer-less days.

Helping Daddy change the hoses on the new washer that didn't work until today.

Faith and Sacraments

I have a strong faith. I was raised Catholic and as many of you know, went to Catholic school from kinder to the end of high school. I was a lapsed Catholic and four years ago felt a strong need to reconnect with my faith and to have a strong faith-based community around us. I guess we were being prepared for this moment.

Our kids go to Catholic school and the kindness and love we have received from teachers, administrators and families there over the last two weeks has been so touching. They've filled up the meal train so quickly, sent gifts and cards and positive messages. They are loving and supporting Abby during this tough time and it makes my heart sing. Each and every one lifts us up and makes us feel loved and so grateful for the village we have helping us to raise our children. 

I have been helping with the youth ministry a bit over the last 3 years with our amazing youth minister. Abby is preparing for confirmation in February and Ollie has been preparing for First Communion in April, but we'll now have to postpone that Sacrament until next year. He did get a Sacrament this week, though...

Our priest has been aware of the seriousness of our situation for weeks and was praying at my request. Last week we put Ollie on the prayer intentions list so everyone could pray for him. Abby and I were at mass with friends last Sunday and none of our eyes were dry when they read his name. They're also saying a mass for him tomorrow at St. George. 

Our priest also offered to come and give him the Sacrament of the Sick before chemo starts and to my surprise, Mario (who believes, but is not super religious) immediately said yes that everything helps. We explained to Ollie and he agreed that it was okay to do the Sacrament. 

Monsignor Hans came to our house last night and all four of us sat at the dining room table where he had set up a tiny altar. The blessing is like a mini special mass. Monsignor knows our kids from school and church and was extremely gentle in explaining to them what everything meant and what each part and symbol represented. He explained that it is a very special blessing and the ultimate fulfillment of baptism and is very special because most of us never have that Sacrament, so now Ollie will have more than most other people as he grows up. The kids were so reverent. Abby and I were a bit teary by the end after we all prayed the Our Father together. There is comfort in faith and ritual and knowing that God's special blessing has been given to my boy. It's certainly not the Sacrament we expected him to get this year, but I am glad he had it. 

When the kids departed Monsignor stayed and asked us many questions about the diagnosis and treatment. He told us that based on his experience ministering to families like ours, the road will be long and hard and we will feel darkness at times, but we must remember that He is with us and the entire Parish is praying for us. He left promising to visit Ollie in the hospital. Over the last four years I have come to know our priest a bit better. He is a stoic German with strong views on the Church, but he knows the importance of creating a strong community, is so very kind and always there when you need him. 

While I am Catholic, I have friends of all faiths praying to their higher power for Ollie. Others have told me they don't pray but are sending positive vibes or lightness his way. It all helps to build our faith in God's goodness and that our boy will get through this and be well. 

Apologies for the long post, but one more important thing happened today that I believe is related. We were waiting in the Medical Day Unit (where Oncology is located) for the next part of his day to prep for his PICC line insertion and for them to inject the first chemo into his spine to keep the nasty lymphoma out of there for sure. As we waited, Molly the clown was there and could see our stress and just kept giving us winks and high fives. At this time a little boy about a year older than Ollie ran over to Molly to high five her and exclaimed excitedly that it was his turn to ring the bell today. 

I explained to Ollie that kids that are brave warriors and beat cancer have a special ceremony at the end to ring the bell and have everyone cheer. A bit later when we were rolling him to the OR, there was a massive joyous crowd of family and CHEO staff around the bell with the beaming boy waiting to ring it. Everyone was cheering including us and Ollie said he's going to get to ring the bell too when he's done chemo. 

There are signs of hope everywhere.

Ollie with "Mr. Llama Llama Blue Pajamas" that his sister bought him so that he knows she is with us.