Ollie with his Dragon from his incredible school community, dropped off with hugs and a CHEO gift card for mom by his incredibly kind principal and her husband.
This is so hard to share, but so many of you are following along and checking in to see how we are or if we know what this is, yet. I do not in any way mean to add to your stress or pain, but need to tell the real story here, not the "beautiful family on social media" story because I am trying to raise awareness of lymphoma and what it is like to parent a critically ill child.
So much has happened here in last two days that this may be a really long one (apologies!).
I met with Ollie's oncologists at 4 pm Friday. Mario was on his way to get Abby and I knew it was going to be bad news as they left a nurse with Ollie and took me into the back staff meeting room to talk. I called Mario and he said decide whatever I needed to without him and he'd call me when he and Abby were home safe as he we didn't want to have a difficult conversation while he was driving. Fortunately the Social Worker, Sherley was with me for support (another sign I'd need it since she was already there).
It turns out Ollie is sick because while it's acting like meningitis, it is actually being caused by lymphoma in his cerebral spinal fluid (spine and brain). So the scans that we got last week that showed that we were really killing lymphoma didn't show that jerk trying to take over my baby's brain. I wanted to scream, but I listened while tears flowed. Even the doctors haven't encountered this in their years at CHEO to-date. Great, we're atypical again! Why can't we just be normal and boring for once?!
They feel immediate chemotherapy will fix his meningitis-like symptoms being caused by the lymphoma. They spent hours on the phone and reading case studies about just a few other kids around the world who had this happen, too. They also elaborated on the rest of the plan, that I'll share later on this post.
I remembered to ask a few questions, but mainly ones focused on his immediate needs for survival. I also asked them to answer any Mario would have on Monday and to help us tell Ollie next week about the new plan. We're not telling him everything right now as it is overwhelming for us to process. His anxiety is so high that we've decided we'll have to involve psychiatry (we already started working with psychology) to medicate him throughout this process so that his poor little mind is not constantly overwhelmed and in fight or flight mode. We have to get him through this mentally whole, too.
I am shattered right now. I know we can still beat this, but it sure feels like we can't catch a break.
When I finally got to tell my husband that evening, he also shattered. I have never seen him do that in 15 years together. My big brave teddy bear of a man who always tries to be so stoic. I can't share more of this incredibly personal time, but we did pick up each other's pieces and agree that lymphoma is not taking our son no matter what and that we have to stay positive and get him every resource possible to help him get through this.
So now they've injected his spine with more chemo today and we start our regular round 3 of chemotherapy tomorrow. After chemo this week, the plan is radiation (laser) for his brain for about a week.
The empty waiting room and Ollie was the only surgery on the board this afternoon.
Radiation on a 7-year old's brain is a big thing. While not as dangerous as for a very small child, it can have lasting side effects like developmental delays or challenges. The doctors seemed confident that the risk for Ollie is necessary and the likelihood of any significant loss of any abilities is minimal. Either way it's not like there's a choice if we want him to live.
Plus after chemo and radiation he'll need a reverse bone marrow transplant where they remove some of his own bone marrow that is cancer free, save it and after more chemo, inject it back into him. This means going to Sick Kids Hospital in Toronto for up to a month. I really didn't want to have to tell Abby that, as she's been so sad about a separation of only 8 days so far! I know she and Mario can come to Toronto, but this is so unfair!
There have been a few more developments, though. Antibiotics stopped and better major pain meds have been put in place until the chemo starts to reduce the pain. His sight has (temporarily we hope) been affected because the pressure on his brain from the extra cerebrospinal fluid on his brain is pressing against his ocular nerves, so he has gone from seeing double to seeing blurry to seeing black with light sometimes. Imagine having to deal with all of this pain AND all of a sudden experiencing blindness, too?! Optomology has now been called in and are looking into things. We have another exam in their clinic at the general tomorrow and likely another MRI after.
His heart rate and breathing have been experiencing intermittent drops over the last 48 hours, scaring the heck out of us. Last night a specialized team (the STOP team made up of experts from all specialty medicine areas) helped with his pain management. Mario stayed with Ollie last night and discovered playing music seems to help to regulate Ollie's heart rate and breathing.
The tablet now plays music on low constantly.Ironically "King of Pain" by The Police is one of his favourites.
The magic green button at the top now allows the release of extra pain killers as needed (maximum every 20 minutes).
It's scary to watch fluctuations in your child's vials and to see alarms go off, but sadly you start to get used to it.
This evening they moved him to the Intensive Care Unit (ICU) to give him better access to pain management and a dedicated nurse to watch his levels until things return to normal.
Ollie in ICU
Hopefully in a day or two he'll be feeling better and be able to go back to 4 North to complete chemo this week. In the meantime it will start in ICU tomorrow. In the meantime the nurses are amazing, the parent facilities are newer here and there is comfort in knowing someone who is an expert is watching your baby all night.
The crazy thing about having a critically ill child is that when things go from bad to worse your idea of bad shifts. Two months ago on diagnosis day when they told me he might be sterile after chemo, I was so upset thinking he may never have a child of his own. Now I find myself thinking, if he was permanently blind, but lives he can still have a full life. Or he can adopt if he wants kids because he'll be alive! Just a few months ago I would have thought only blindness would be a very bad thing to happen to him. Incredible how your perspective shifts so rapidly in all of this.
So that's where we are at. I've had so many big ugly cries over the last 24 hours that my eyes hurt and I feel like I have an emotional hangover. To top it all off, Abby now has a cold and Mario and I are masking up in case we've been exposed so we don't pass it on to Ollie or another sick kid. Honestly we just need a breakthrough. Anything will help. Ollie feels like God is not listening to us, Mario feels like he's being punished and Abby and I are just clinging to faith
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Please keep sending prayers and positivity. I wish I could stop asking you for help, but every time we take a step forward something pushes us back right now and we need to lean on you so we don't slide back further. Big hugs to all.
