Control

Ollie HATES the broviac (central line in his chest). He got it only about 2 months ago in preparation for the stem cell transplant, but in the last few weeks it's bugged him daily and since it will now likely be months before stem cell transplant is even possible again, it seems an unnecessary agitation. A few times when

very upset he tried to pull it out of his chest. This scared us terribly. We've now gotten to the point where we don't trust him to be alone for even a couple of minutes. 

He's been begging us to remove the broviac. Normally it would be a little crazy to remove one type of central line to replace with another, but we feel it's dangerous to leave it in and bad for Ollie's mental health for us to ignore his agony over it. We finally agreed to ask the doctors about it. When we first mentioned it a couple of weeks ago, I could tell Sick Kids wasn't keen on the idea.

We talked to our oncology team at CHEO about this before coming back to Ottawa. We explained that we know it's a bit crazy, but he was better with the PICC and we have to show him we're really listening to what he needs to give him a sense of control about his condition or he won't make it through this next part. He cannot give up, so we need to give him some wins so he wants to keep fighting the lymphoma.

Last Saturday our head oncologist at CHEO, Dr. Brianna Empringham (replacing dear Dr. Abbott who just had a baby girl!) called to tell me that she and Dr. Lisa Pinto (our oncology fellow) had discussed the broviac and were going to have it taken out. Thursday that's exactly what happened. 

Ollie was ready and after another night of NPO (no eating after midnight), we arrived at the hospital with him hangry again and me having to tell him we'd eat as soon as we could and keep distracting him until they took him into the OR. 

The broviac when it was first new in early March. 

The new large PICC in his upper left arm.

Again he surprised me with his determination on Thursday by taking a sedative orally that normally he'd fight tooth and nail to avoid. He simply wanted to get it done and I was impressed with his commitment to what he wanted. 

CHEO has implemented many new COVID-19 processes. Beyond the obvious screening at the entrance, you now have to be escorted everywhere at CHEO. So when I went to get a coffee after they took Ollie into the OR (which parents can no longer go into either) on Thursday morning, I had to be escorted downstairs. Coffee was free at the Cafe, though! What a lovely treat! Then I had to go back to the foyer to get another escort to take me back upstairs, but she was new and I'm now a veteran, so I showed her where the surgical day unit and waiting room are.

Gone are the days of a full waiting room, so there were 3 of us there, each in our own corners. Volunteers are also gone, so a nurse now calls into the waiting room from recovery to tell you to come to recovery to be with your kid.

Ollie was pretty upset when I went to see him after his procedure. He was crying, shouting and struggling to sit up. I tried to calm him, but in the end I grabbed the thermos of mint chip ice cream that I'd packed (with ice and a plastic baggy with ice cream in it that was just starting to melt) and started shoveling it into him. He calmed right down and the nurse (Karen who has helped us in recovery before) chuckled at how I knew what my kid needed and how well prepared we were. She also brought him juice and a popsicle. 

I just kept feeding the beast and trying to keep him from touching his bandage where they took the broviac out or the new PICC. Seeing that Ollie could keep food down, Nurse Karen said there was no need to stay longer, so we packed up and got ready to go home. 

Friday he complained of a bit of pain in his chest and arm from the procedures and started asking when they could take the PICC out! Our often cranky 17-year old cat, Minou is pretty perceptive, so knowing Ollie wasn't happy or feeling great she spent a good part of the day snuggled up to him (shocking because she is not a snuggly cat). This actually calmed him and helped him to rest a bit. Chewbacca has been doing same with him the last two days. Amazing how our animals know when we need comfort.

Thankfully given it was Abby's birthday, there were also plenty of distractions to keep his mind off of his agitation with the PICC and the bandage on his chest where they took the broviac out. 

Abby had an incredible birthday that she was sad to see end. I had asked friends and family to show her their love and they came out in socially distanced droves to make this happen for us. It meant the world to us.   

I thought it was so beautiful that friends of Ollie's whose families have truly become friends of ours, too came to show Abby their love as well. One of my favourite moments yesterday was when his friends Olivia (from his class) and her brother Charlie came by with their sweet mama, Sarah. Ollie was lying on the sofa in the living room while Abby and I were at the front door chatting with them on the sidewalk. Olivia and Ollie started yelling hellos back and forth. Both were so pleased just to yell hello to a friend! 

Ollie couldn't wait all day to have a piece of her Merry Dairy Funfetti ice cream cake! 

He's kind of addicted to ice cream and Mary Poppins was absolutely right that a spoonful of sugar helps the medicine go down! Unfortunately the steroids and constant eating are causing him to bulk up so quickly that sometimes I hardly recognize him or even worse I sometimes forget what my handsome boy looked like before cancer. Either way, we are also hulking him up in prep for radiation in case he has loss of appetite. We've already been through a situation on this journey where he was so sick that he didn't eat for 17 days and lost so much weight he was frail, so the weight doesn't worry us at this moment. Once the steroids are done and he is stronger physically again we can dial back his weight gain and get him more active. One problem/one bridge at a time.

Today was a pretty good day despite him getting up at 5:30 am after not sleeping great last night. He told me this morning that he felt happier and not sad at all, so that started our day in the best possible way. 

He even felt well enough to try Beyblading with daddy today! His broviac and it's dressing has obstructed his desire and comfort in playing Beyblades for weeks now. It's been almost 3 weeks since he's even picked up a Beyblade or any other toy for more than a minute or two. Imagine having a kid who didn't want to play?! Heartbreaking. 

He got up and walked around more today and also sat and ate dinner at the table with us for the first time in weeks. The optimist in me wants to believe that this is the new miracle medicine actually working. Please God, hear our prayers and let this be the case! 

He also wanted to make some special treats today, so he was pleased to actually sit in the kitchen with us and help with some baking.

Tonight he just wanted to watch a movie together and eat Jiffy Pop Popcorn (on the stove as too could for outdoors on fire table yet), pretzels and salt and vinegar chips. He ate a couple handfuls of each, but had all of his faves. 

I bought a case of 12 Jiffy Pop on Amazon last week because I plan to give this boy every ounce of joy we can going forward. 

I asked him at bedtime what the best part of his day today was and he said having dinner together. 👪

So one more day off rest before the next hard part starts with radiation on Monday. He'll have 13 sessions (one a day for 13 weekdays) of head and spinal radiation. It's low dose, so side effects are no worse than they were going to be when he was going to have radiation before his stem cell transplant. They're also remarkably similar to the side effects for chemo. 

We feel well supported here and that helps going into something so scary. The child life specialist in MDU, Manon called Thursday after Wednesday's radiation planning to see how Ollie did and then Friday to see if we wanted her to meet us at the Cancer Centre on Monday morning to see what she could do to help Ollie stay calm and get through his first treatment. Virginia, our oncology coordinator, also called to tell me she had booked both a plan A and a plan B and has a plan C, too. Plan A is we go for 10:30 am each day without sedation if he is able. Plan B is if Monday doesn't go well and we need sedation, they've booked us at 1 pm each day tentatively so that he could go under general anesthesia. Plan C (which it looks like will become Plan B if needed) is they'll switch the schedule around to have Ollie go first in radiation at 8:00 each day if he has to have sedation as they know he has a really hard time being NPO (no eating), especially in the Dexamethasone steroids that make him hungry all the time.

So although we know only too well that control is an illusion, we feel more in control this week and more ready to tackle the next challenge.

Happy Mother's Day to all of the mamas, aunts, grandmas and single dads who nurture and mentor our beautiful babies through so much. I am so grateful to have been chosen to be Abby and Ollie's mom every day. 

Hometown advantage

We made it home to Ottawa Sunday afternoon after a fairly smooth ride back. With our dear friend Vic once again following us back from Toronto to make sure we had help if we needed it, we stopped a few times en route. Because of COVID-19 virtually all public restrooms are closed, so it's almost impossible to find a place to pee! Thankfully we had Ollie's trusty commode in the van and I'm not ashamed to say I used it out of necessity! I have never been so glad we bought the van with those stow and go seats where we just put one down into the floor and used that space for the commode. We also had to stop to get Mint Chip ice cream to take with some medicine, but Ollie was disappointed that it was not Merry Dairy ice cream.

We got home late afternoon after about a five and a half hour journey. Ollie did pretty well, but in the last two hours we gave him morphine as his muscles were really hurting despite extra padding, reclining a bit in his seat and trying to get him to shift positions and stretch at each stop.

When we turned into our street, a beautiful socially distanced gathering of friends was there to welcome us home with clapping, yelling, whistling, signs, groceries, gifts and so much delicious food. It was a hero's welcome for Ollie and we were so touched by it. 

Our dear friends who took care of the cats and fish decorated inside, too and coordinated with other incredible friends to stock our fridge and pantry. Others brought food for the freezer or dinner the first few nights. Over the last days we have received so many expressions of love. From spring's first tulips to our first BBQ of the season, we've had a beautiful taste of homecoming and we were so thankful.

Gifts for Ollie have arrived from friends and family, too. Anything to bring him some joy. The one below is bigger than he is and he was thrilled with it and plotting to set it up on the backyard for family Nerf wars. I love that the fact that he is blind didn't even factor into this planning as he was convinced he could shoot us all by listening and figuring out where we are. 

Within minutes of arrival at the house he had his Mint Chip from the Merry Dairy down the street and was happy when friends later brought him Funfetti too.

Monday and Tuesday were unpacking and figuring out a new rhythm kind of days. Ollie sleeps upstairs in his or our room and comes downstairs for most of the day. 

Chewbacca the cat is clearly happy we're home. Our incredible neighbours, Mike and Barbara also took care of the beasts while we were away and sent the kids daily hilarious reports of them getting into trouble. Stephen's stories of Chewy' s mischievous acts also made them laugh.

I forgot what a stress reliever our furry friends could be despite the extra work they sometimes cause.

Ollie is getting stronger by navigating the stairs with help. At night if he's too tired, Mario carries him up to bed. He's 37 kg, so it's way harder than it used to be! By morning and after sleeping he's generally feeling stronger and can go down the stairs walking slowly or on his bum with support. He and I used to go down the stairs that way together (with him on my lap) when he was tiny and I had sciatica pain and couldn't lift him. Just another example of how things are in a crazy way almost frozen in time. 

He's walking more at home and with more confidence. He's also been calmer and less angry (steroids do that to him). Coming home was the right decision to help him mentally for this next set of challenges.

Wednesday we were back at CHEO for check ins with our oncology team, the weekly central line dressing change and radiation planning.

It was also honestly like coming home being in the Medical Day Unit (MDU) with all of the nurses and doctors we know coming by to say hello or to check in because they knew we were back and would need support. Our social worker also came by as did our palliative care team (pain management). Many congratulated Ollie on having a pizza named after him. 

We met our radiologist, Dr. Chan, too. What a patient and kind woman! Ollie had been NPO (couldn't eat) since midnight as we had planned for him to do the radiation planning while sedated under general anesthesia. Ollie is on a high dose (5 mg twice a day) of Dexamethasone steroids to cool down his optic nerve and help to hold back the lymphoma in his cerebral spinal fluid. This makes him very "hangry" so he was demanding to eat and imploring all of us to let him do the radiation planning without sedation. She agreed to let him try and told him if he couldn't do it that way, we'd try again tomorrow with sedation.

He was so happy and ate so much!

He did later have doubts about doing the planning without anesthesia, but daddy and I convinced him to try and we wouldn't be mad if he couldn't do it.

So off to the General and it's cancer centre. The technicians and radiologist could not have been a more well-oiled machine. They talked Ollie through every step, encouraging him and praising him each time he did what they asked. 

They made his mask and he was great until the end when they were doing the CT and he'd had enough of the mask holding him onto the table. But he got it done. No drugs. And he was still. He never could have done that 6 months ago! 

We're coming up a plan to give Ollie some drugs to calm him but not put him to sleep for his sessions of radiation as it will make it easier so he doesn't have to be NPO every day. 

 

His new third generation ALK Inhibitors were ready at CHEO today, too. One moderate sized tablet once a day. No cost thanks to Pfizer's releasing them to us on compassionate grounds. CHEO had already done the leg work to request this drug before we left for Toronto, so I am grateful for their foresight. Ollie took the first one this afternoon with no issues.

We know of three other families (2 in UK, one in Australia) with kids with Anaplastic Large Cell Lymphoma  taking this miracle drug and getting them into remission. One of these incredible moms sent me a link to an article where a teen with an incurable tumour who had fought for years took this drug and she is now on the way to being cancer free when they never thought it would happen for her. 

So I prayed over these drugs today, begging my God to make this the miracle we need to get Ollie well, too. I have faith and hope in the powerful combination of a team we trust, a miracle medicine, targeted radiation and the strength and determination of one amazing boy. Here we go...

Home for our hero

HOME. A great four letter word. One of the best ones. Second only to LOVE. 

After a whirlwind of 47 days at CHEO where he had a relapse, got lymphoma in his brain, went blind, had incredible pain, likely had seizures, was in ICU for over a week, had two brutal rounds of chemo and a new PICC line inserted. Then only 36 hours at home when suddenly he was back to CHEO for 16 days to fight 3 infections, shed most of his skin from chemo, painful bed sores, major bruising all over his legs, arms and torso, removal of his new PICC due to infection and implantation of his broviac in his chest. He's so weak, physio is necessary to rebuild his muscle.

Now home for a mere 24 hours before heading to Toronto tomorrow for preparations for his radiation and stem cell transplant. Ollie and I will be in Toronto for 3 months. Abby and Mario will be with us at least a month until transplant and possibly longer depending on COVID-19, work and school.

On the one hand this seems incredibly unfair that we get one day at home together after the last two hellish months, but on.the other, home is literally where the heart is and mine is with my husband and my children no matter where we are. I've always said that you can make a home anywhere. I have my parents to thank for this. Although they were divorced when I was young and we moved a lot, I got used to making home wherever I was. I found comfort in my loved ones being around me whether it was at my mom's, my dad's or my grandparents' house. It was never about the physical place. Always about who I was with. 

Interestingly enough, Abby wrote a beautiful piece recently for a writing competition about what home means and that's exactly what she said, too. She said our house felt quiet and empty without Ollie and I, and that home was wherever we were all together, even if it was in a hospital room. I'm trying to get her to post the piece to this blog as it was beautiful.

So as we prepare to leave our home for months for a short term condo rental in Toronto to get a lifesaving transplant where my daughter will save my son, I don't give a fig where we will be physically as long as we're all together as much as we can be. 

So in this time of social distancing or isolation when people are feeling caged, restless, bored, confined, stressed, maybe even agitated by your loved ones, think about how much we are grateful for this or any time together. Don't take this time for granted. Stay home and love each other. Enjoy time together. Talk to each other. Be present. Practice gratitude. This time is surreal, but so much more precious than you can imagine. 

I leave Ottawa sad that I won't see any of you for months, scared of what is coming next, but grateful that we are together and will get Ollie well so we can come home whole again. Wishing you all well and sending you all love.