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.