In the blink of an eye...

I can hardly believe it's already been a week since I last posted! So much and yet so little has happened since then.

We've spent a lot of time on the deck as Ollie loves it. The photo above was a bit crazy though as it was one of those really cold days this week and we had Ollie all wrapped up in blankets while wearing warm clothes and we started the fire to stay warm!

Ollie had a visit to CHEO's Medical Day Unit (MDU) on Tuesday and they added a Friday visit since Tuesday his hemoglobin and platelets were low and they wanted to check if he needed a transfusion before the weekend (he didn't!). His dressing change on Tuesday was likely his calmest ever. Since we've stopped his morning dose of Olanzapine (anxiety med), it was all on his own steam and self-regulated. Impressive.

He'd been having some eye discharge and starting to see light again at night in a dark room when lights are turned on. A sign that his optic nerve is no longer suppressed by the lymphoma (we think). Also a possible side effect of the radiation. Unfortunately when we got home Tuesday afternoon, Ollie had terrible eye pain that required Tylenol and an ice pack under his eye mask. He slept a bit and still had it when he woke, but it did go away that evening. The next morning it was the right eye, although less painful and short-lived. 

This was scary for us because when he last relapsed in Toronto it was headaches and eye pain. The doctor checked him out Friday and thought everything seemed okay, but reminded us to let them know if he has any headaches. They also asked for an opthomology consult soon for his eyes and nerve to be rescanned.

Our friends Kim, Trevor, Ewan and Jackson kindly dropped by some specially ordered rare Beyblades for Ollie while he was feeling unwell and that really perked him up!

By late in the week he was in great form and happy, although getting a bit bored given we now have more time at home. So Daddy helped to set up the Ipad that Candlelighters provided him with and I downloaded some accessibility tools and apps for the blind. There are games that you can play even without sight! The first he tried was called, "Blindfold Racer". Essentially using the Ipad like a steering wheel and wearing his wireless headphones, he is taken through a race course where he's driving between two fences and gets audio cues to tell him where he is. If he gets too close to the left fence, it beeps in his left ear and he has to steer right and vice versa. There are also obstacles like chickens and cows that cluck or moo in the ear closest to them. The first time he competed a level he excitedly shouted, "I DID IT!!!" He was so proud to be able to do something he always loved before he went blind. I teared up and said a silent player of gratitude for that video game developer. There's something I never thought I'd do!

He also joined his and the other two grade two classes in an online Google Meet on Thursday and was thrilled to be welcomed and included. 

Abby's been keeping busy with personal projects like tie-dying everything white that we own. 😆 She's still doing some schoolwork each day, but has been kinder to herself since her teachers have told her there is zero pressure from them. Her virtual leaving ceremony is coming up June 19 and we are all sad that her last year has gone this way.

On Friday Ollie's lovely physiotherapist Allison came to the house with Shellie from the equipment company Motion to fit him up for a walker. We don't think he'll need this for long, but feel this will give him the confidence to be more mobile and independent. He desperately wants to be more of both. Another day when friend Sean dropped thoughtful gifts by and I was on the porch talking to him as he stood on the sidewalk, Ollie appeared at the front door unassisted. Mario was working at the dining room table and hadn't heard him get up and come to the door. While we're happy he wants to get up and go, it's frightening too as he's still wobbley with his balance not quite right yet. Again it's a lot like when your baby takes their first steps and you're so excited and scared all at the same time. So at least with the walker he will be supported.

Chewbacca has become Ollie's frequent lounging buddy. 

At first this made me nervous, too as animals have an innate sense of when people are sick and need help. A month ago I think that was true. Now I think they've further bonded and Chewy just loves to snuggle. Ollie is pretty thrilled with the arrangement.

As for me, I'm trying to get things done, like go through the kids clothes and give away anything that doesn't fit. Organizing my own closet to do same...doing paperwork for insurance claims for medications and equipment...sending notes of gratitude to so many kind people who do beautiful things for us regularly. 

And today I donated blood. This is something I have been wanting to do for a while but have not felt up to physically or mentally. It is also something tangible I can do while we wait for his MRI to happen the week of June 22. It took just over an hour, was beautifully organized and socially distanced and it was steady. When your child relies on the availability of blood products for random transfusions you have a deep appreciation of the importance of these donations. I've been a donor in the past, but had issues with iron and often couldn't donate. Thankfully all of the supplements and immuno-boosters I've taken for 7 months have solved that problem (with thanks to my friend and Naturopathic Doctor, Colleen McQuarrie at Ottawa Integrative Health Centre for keeping me well with her good advice).

Finally, the kids were asking for the kiddie pool I gave away several summers ago and begged for a new one, so we upgraded their idea a bit. It's a bit crazy in our small backyard, but they need entertainment and we need something safe for Ollie to play in (lakes, the river, etc. are out for him given bacteria), so a 12' by 30" pool with filter will be our fun this summer. And it will be worth any joy it brings them. Hopefully they won't get hypothermia, too!

Overall a good week, with Ollie mainly feeling good and being his silly chatty self. He's all set to enjoy summer with his pool and waterguns (loved it so much he napped with it!). He also has a birthday coming up at the end of the month, so we're gearing up for a few good and fun weeks!

Winning battles one lumbar puncture at a time...

It was another decent day. Ollie woke talking and wanting to snuggle and be reassured about his lack of vision. I told him that he can't see because there is a war going on inside of his head, neck and spine where the chemo warriors are trying to blast out the lymphoma cells. Many battles are being fought, and one of them happened near his eyes, causing him to lose his vision. 

We know that there are fewer and fewer lymphoma cells in there (down to 16 in the cerebrospinal fluid today compared to 900 a week ago!!!), so we're winning the war, but have a few more battles to win first. Hopefully when we've won, his sight will come back. If not, we have started to tell him about people who live full lives who are vision challenged (Maja if you are reading this you are an awesome example that I share) to show him that life goes on and is full even if you can't see. 

In fact, the doctor wants him to start working with rehab both to get his strength and muscle tone back after over two weeks in bed, but also to start to learn how to navigate the world without the use of his eyes, just in case. We haven't given up trying other options, but in the meantime he needs to live his life, so we need to equip him to keep moving forward with or without sight.

His lumbar puncture went well this morning. In addition to the lower cell count, the pressure of his cerebrospinal fluid was normal! This explains his lack of significant pain the last two days. In fact, the nurses in the OR told me after his procedure that he was like a different kid from a week ago because this time he was lucid and had no pain.  

His oncologist met with me today to discuss the revised treatment plan in light of the fact that we're also doing the inter-thecal in his spine now. The new protocol calls for him to have different chemo drugs on different days for two weeks in a row. It started yesterday, so that means we'll be in hospital continuously for at least a month and very possibly more once we know the stem cell transplant plan when he have a confirmed donor. Ollie will not be happy about this, so it's something I can't tell him right away. To keep his morale up, we have decided to take things one day at a time and not look too far into the future right now. As a planner this is difficult for me, but necessary to manage his expectations and stress. His anxiety is much less now than a week ago and we want to try and keep things calm for him.

He slept a lot today, but after his procedure, I tried to start getting him interested in more tactile things today like stretchable putty, little toys he can feel and explore with his hands, smelly toys, etc. Mrs. Hatoum (Toni) also came by to bring him a few more to help including a squishy pooping llama, which he was delighted with! 

Our priest, Monsignor Hans came by for a visit today. He was very pleased with the way the prayer service went yesterday at school and acknowledged that it was likely the most spiritually engaged and reverent he has ever seen the kids and staff at St. George. Clearly even he was moved by the event. He said a special prayer over Ollie as he slept and Toni and I prayed, too. I feel very blessed to have him as a spiritual support and he has been a

comfort to my family.

Tonight Mario and I switched so that each of us could spend time with the other kid and I could get a break from the hospital. We had hoped that Abby could visit her brother, but she was at the pediatric clinic today for the tail end of a virus that she needs to ride out. So we masked up, snuggled the cat (who really misses me), ordered in, watched a movie, ate ice cream (thanks to principal Mrs. Philippe for the treat to help Abby and all of us feel better this week) and now we're in bed.

Hope you have had a cozy and warm evening with those you love, too!

Chicken Soup for the Soul

Today was a good day. Ollie still slept a lot, but he had only one headache early this morning and no other real pain (only a bit of discomfort from lying in bed for 15 days and annoyance at the feeding tube still being there). He ate some soup and YOP. He's also getting up and urinating and having bowel movements without pain or stress. 

We've cut his pain medication in half and he's doing well. He had short conversations with me and was always lucid. That's a big improvement. 

He desperately wants to see, but is accepting that it may take time until we've won the war against the lymphoma in his head. I've also started talking to him about how you can live a great life even if you can't see. Although we remain hopeful, we have to start normalizing the idea that he'll be okay if his vision doesn't come back.

We started his regular round 3 of chemo with a slight change to one of the usual chemo meds since the lymphoma in his cerebrospinal fluid now requires the change. So far so good.

Tomorrow he'll get another lumbar puncture to relieve any pressure and do the inter-thecal chemo again in his spine.

Meanwhile, Abby was at school where there was a special liturgy and prayer circle for Ollie led by our priest. Several teachers and her principal sent me photos and notes to say how moving it was and that Abby had been so strong and brave in speaking at and doing a reading for it. 

Ollie' s sweet teacher told me she'd felt emotional at one point and Abby saw her and went over and gave her the biggest hug. She's a girl with incredible grace and empathy and we are so proud of her.

The prayers are working. He is getting better and stronger. He is starting to believe that he'll get better. So we all feel better and stronger and more hopeful. 

Thanks to all of you for helping to bring us through the darkness of the last two weeks. We're not totally out of the woods, but we're on the path out.

So many developments in so little time...

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

. 

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.