The Blind Leading...

The past week was great. Ollie is doing really well and only had to go to hospital once this week for bloodwork and a check up. He's still showing no signs of Graft Versus Host Disease, his blood counts are high and stable and his chimerism test remains at 100%! The rest of the week we've been playing, walking, doing physio exercises, resting and reconnecting. 

Abby is happily getting settled in Ottawa with dear friends who are treating her like their own. She goes with them to our house daily to feed and love up the cats and spend a bit of time at home. Her online classes don't start until September 18 now so she's been getting her haircut, seeing doctors and generally getting caught up on her own needs. We are grateful to her surrogate family for their love and support.

Today I really want to talk about his blindness. Blindness is considered a disability. I really hate that word. Some people think that blindness is a terrible thing. Debilitating. They're horrified at the idea that Oliver is now blind after being sighted. I prefer to think that Ollie is now especially abled. That his blindness has given him other super powers. 

From the very outset of his blindness (that was a side-effect of the lymphoma in his cerebral spinal fluid last January) Mario and I didn't see it as the end of the world. We sat in a room full of experts who told us they didn't know if he'd ever recover any of his vision or not and we looked at each other and said, "He'll still have a great life WHEN we save his life." Then we asked the doctors, "So what's next to kick out the lymphoma and save him?" 

I know from other dear friends who have special children with different needs and abilities that they felt this way, too. That they needed to acknowledge that their child was exactly as he or she was supposed to be and may have challenges as a result, but none that would be insurmountable. That their children are still able to be the loving gifts that they were intended to be.

We've worked really hard to encourage Oliver to appreciate that being blind is not the end of his world, but just a change in his world. That he can still see, he just uses his other senses and input from people around him to paint the picture in his brain now. That it's something that he can adapt to. Something that he can learn to live with and overcome the difficulties of. These last 7 months we've encouraged him to try things and focus on what he CAN still do to get him to a point of acceptance. 

I've had several people forget that he is blind and either send him photos to look at, suggest he might like certain games or toys while in hospital, etc. When they realize, they're all very embarrassed and apologetic. I always tell them not to worry as we sometimes forget, too. It's still new and we're all adapting. Mario, Abby and I are learning to be better explainers and describers. Using more descriptive words when telling Ollie about something he can't see. Trying to remember not to say things like, "Ollie I wish you could see this!", but instead describing to him excitedly what we do see so he can picture it, too. 

We're also encouraging him not to have a chip on his shoulder about his "disability" so that people don't treat him differently in a way he'd dislike. We're trying to make him honest, but matter of fact about how he feels about and deals with it. He tells people frequently that he's legally blind. It's funny because so many educated adults don't know what to say to that.

He also realizes that in spite of his blindness he can do just about anything he sets his mind to, and daily he shows us that this is absolutely the case. So it's awe-inspiring for me to watch a person who has been sighted and is now blind try to navigate the world around them. They have context. They have an idea of what things look like, what their texture and shape is. They get the concepts of size and they understand colour. They have all kinds of frames of reference that a person who is born blind doesn't have. So in some respects that makes a person who was sighted and becomes blind perhaps more advantaged. This was explained to us by the Vision Itinerant team at the school board as well. 

He's leading us and teaching us so much. When we were in hospital, Ollie wrote my mom a letter on his own. I only helped a bit to help him space out his lines of text. My mom has been so touched at the fact that he would actually sit down and write her a letter when he can't even see what he is writing. That's determination. He has an abundance of it and that's one of the many reasons why we won't let him feel sorry for himself. 

So we won't accept it when people seem to think that blindness is the worst thing for him and that we should keep trying to fix it. We have been told by experts that his optic nerves are severely and irreparably damaged. Of course we are hopeful that in future as Ollie ages and technology evolves he may be able to recover some of that vision. We're hopeful that one day he may be able to have an implant much like a cochlear implant that will enable him to see forms and shapes. Perhaps a bit of light. Things that will assist him in his daily life and make things a little less challenging for him, but in the meantime we're really glad that he has learned that he is totally capable of doing just about anything that he sets his mind to. 

I always find it very funny that when he gets mad, one of the first things he wants to do is stomp off by himself. He doesn't let the fact that he's blind or doesn't know where he is stop him at all. He puts his hands out, steps forward confidently and he's ready to go. You can be certain that attitude will take him very far in life...already has in fact because he's stl with us against all of the odds. 

There are still lots of things I don't understand yet. Like how he'll re-learn to do certain things like walk with a cane, find clothes that match, find a missing shoe, move without fear of hurting himself. I know he'll learn them all and so much more, it's just mind boggling sometimes to think abouthow much he'll still have to overcome and learn. He's now been assigned his new vision itinerant teacher and I can't wait to hear more about how they're going to help us to help him to learn in school, but also other important and practical life skills.

We restarted his Braille lessons with oh so patient Leona this week. He was reluctant and a bit difficult at first, but quickly showed us that his beautiful brain retained all 17 letters that he now knows of the Braille alphabet. 

I got a letter in the mail from Canada Revenue Agency telling me that I will now get the child disability credit and that he's also eligible for the Registered Disability Savings Plan. So I spend many hours in a day right now learning about resources that will help to secure my son's physical and financial future. Because now it's more important than ever that we set him up for success for the rest of his life. He's fought so hard to HAVE a rest of his life and we want it to be long and comfortable.

Anticipation vs. Anxiety

Today's the day. The day of Ollie's MRI and lumbar puncture to determine if the Lorlatinib drug and radiation are working. I am, as Abby would say, "excervous". Excited that the day has finally come and our agonizing wait is nearly over, and nervous about what they will find. 

In all fairness, I shouldn't feel too nervous as I am certain that the new treatments are working. Oliver is happier, healthier and more active than he has been since he became very ill and was in the ICU in January. His attitude is better, his sense of humor is on fire these days and he's determined to do things he used to. 

Over the past week he's gotten physically stronger and insisted on walking more and even going up and down the stairs by himself (with a paranoid parent nearby to catch his fall if needed!). He hasn't climbed the stairs on his own since January. 

He's embraced the Braille learning and is now teaching Abby and Mario. He learned the first five letters of the alphabet in Braille in about 15 minutes last week during his virtual lesson with Leona from the Canadian National Institute for the Blind (CNIB). She laughed and said we'll learn as many more as he, wants to next week, but told me after that he'll have them all down within a couple of weeks with his quick brain. 

This is an enormous relief considering they tell you that radiation can cause learning disabilities, but all we've seen so far is that his intelligence and quick wit have returned! He's even doing significant math in his head and learning multiplication! 

We struggle sometimes to find a balance between letting him do normal, physical things and getting him to lie down and rest. His ankles get swollen and his lower back starts to hurt if he sits up or stands too much. They're also looking at his spine today in the MRI to see if he has a compression or fracture, which is apparently very common in kids who have had chemo.

He's still annoyed that he has to cover his PICC line to swim, but there have been several days where he's gotten past this and happily floated around our giant kiddie pool.

Last week he also surprised us by insisting he could play like a normal kid in the pool on his own and did this...

 This may not seem like much, but for a cancerous blind kid whose balance and fear have prohibited him from even bending down to pick something up off of the floor, this is unparalleled. He then stood up confidently and stably and was so proud of himself. So were we.

Even little things like feeding himself soup are getting easier.

He got an exciting present of a favourite treat from sweet friend Sharon who has repeatedly sent lovely and unexpected treats to my kids over the past 8 months.

He also participated in a grade 2 scavenger hunt and his thoughtful teacher, Mrs. D sent me the list of items ahead of time so Abby and I could gather them and Ollie could just search in a basket to make it physically easier for him. Fenton family note that he used his Octopus that you sent! Thank you!

Abby's Virtual Graduation was last Friday. It was bittersweet. Picking up her grad kit and not being able to hug the amazing educators who have supported our family like never before this year felt awful. Abby was upset all morning. Add to this a call about a family member who was injured and had to go to hospital and the stress was palpable here.

When the time rolled around to watch the virtual presentation, Ollie wanted to watch, so I narrated what was happening for him. Naturally Mr. Inquisitive asked a million questions. Abby got upset at him and uncharacteristically lashed out at him saying this day was the only one about her and she needed quiet. He got mad and cried saying he didn't ask for cancer and couldn't help that he was blind and wished he could just be normal. By this time all three of us were crying. Some days no matter how much we want to be positive right now we just get caught between cancer and COVID. 

When we all calmed down we hugged it out and then sat down to watch the rest. It was as lovely as could be under the circumstances.

Abby was awarded the Kiwanis Club Award, which is generally given to recognize positive attitude, dedication and commitment to one's community. She also got a medal for Character. Both very fitting for our girl, especially this year given all she's done to donate stem cells for her brother.

While we've waited for today to arrive, we've had some fun. We had our own CHEO Teddy Bear Picnic last weekend since they couldn't hold their annual event.

Ollie begged us for the game Pie Face and we stupidly agreed to buy it. 

It was actually worth it for the laughs, though. 

Again and again Ollie got pied, but loved it.

We parents...not so much.

The MRI and Lumbar puncture (to check if there are still lymphoma cells in his cerebrospinal fluid) went well today. Now more waiting on results. Might take a few days and we'll share when we can. So being the Momcologist that I am now, I am confident that we will hear good news and either be in remission and on our way back to Toronto in the next few weeks to finally get Abby's lifesaving stem cells, OR see a significant reduction in the number of cells and lesions and stay the course on the Lorlatinib for a bit longer to get there. Honestly he's been SO well that it is impossible that he isn't kicking lymphoma's butt right now. 

So please send those positive wishes and prayers our way asking for the news we deserve. This kid has fought so hard to be a contender and it's his turn to win. Love to you all and thanks for your patience as we wait for news and next steps!

Precision and Social Distancing

We have one week of radiation under our belts! Five down and only eight treatments left to go! 

On day two and each subsequent day this week Ollie couldn't wait to get there and get it done as quickly as possible. The days with afternoon appointments were harder because he wanted to get up, get to the hospital to get it done and hated all of the waiting around. Some days he'd wake up at 5 am and have to wait until 1 pm. It makes him very anxious and he obsesses, trying to control anything and anyone around him until he gets into radiation. Morning sessions were easier and going forward all of our appointments are morning ones, thanks to our diligent oncology coordinator rescheduling everything to hep make it easier for Ollie. 

We've had the same radiation team all week and they are pros. Each of them is great with kids, so patient and understanding, anticipating and catering to his every need. They also understand that when something works well, you just do it over and over to provide the child with much needed predictable patterns and processes. 

Ollie is no nonsense and wants to get in the machine and get the mask on as quickly as possible. Since day 2 he has literally done it all in one go. 3 minutes of treatment, 1 minute outside of the machine for out to be set up for the next one, 3 minutes in for the second treatment, 1 minute out, then 10 minutes for the final scan. He has to stay as still as a statue and does it every time. I am certain his teachers will be shocked at his ability to remain still  now since he has always been the kid who was constantly in motion. 

Sometimes he talks to us in the machine. Often he talks about Beyblades or plans he wants to make for the day. Sometimes he just sings along to his Bye Bye Lymphoma playlist (note: let us know if you have suggestions to add to this list) that we made months ago and play when we need reminders of our strength and courage. 

At times he gets impatient, but I either calm him down by taking to him while he's in the machine or he counts the seconds backwards each minute until the time is done. They always give him treats and high fives for doing such an amazing job.

Watching him get radiated is easier than I imagined. It's all very targeted. I sit in the control booth and can see the images and where they're targeting. I am not well versed enough to read the scans (yet), but am asking questions and learning. I am so indebted to the incredible team in Radiation South and to whomever invented these technologies that make this far more precise than ever. 

When we're all done, Mario comes to get us so I don't have to lift Ollie in and out of the van and risk hurting my back again. 

He's doing okay and working from home as needed (see photo below with his favourite new colleague). I am so grateful that he is able to take such an active role in Ollie's day to day care as this really balances things out for our family so that I can spend time with Abby, too. 

Until you have a critically ill or special needs child you really have no idea how challenging the simplest things can be. From helping him up and down the stairs, to assisting him to urinate or have a bowel movement (given he still can't see, his balance is off and he is fearful to do anything alone), to helping him to have a bath (he's so afraid of getting in the tub alone when he can't see, that we've bought all kinds of handles, grips and I usually get in first in my bathing suit to support him getting in and out and from behind while Mario washes him. Every little thing is an endeavor, but they are all labours of love. As he gets stronger and we figure out the blindness, it will all get easier. As he reminded me the other day, " You always say patience is a virtue, Mom."

Abby has been having a difficult time this week, too. She is stressed and wanting our attention and it is challenging because you need to put so much energy into the sick kid that you expect the well kid to just understand and wait for the attention. But anyone with kids knows they don't wait, they demand the attention now. So as usual we're struggling to find the best balance.

Ollie is still on the high dose of Dexamethasone steroids to keep the lymphoma under control until we know of the Lorlatinib drug and radiation are working. We are setting up scans next week so we hope to see that it is wiring and the Dex can start to really be weaned. He's constantly hungry and overeating on them. Trying to control his appetite or his aggression and tendency to want to control everything is almost futile. There are many battles. Some beginning early morning, so he's woken his sister with yelling a few mornings which made everyone's start horrible. We just keep breathing and trying to get past annoyances and stress.

He also has about 2 t-shirts and two pairs of shorts that he likes and gets agitated if we need to change them. While he's always been big for his age he's gained a lot of weight from the Dex and his skin shows stretch marks and thinning of the skin.

On a positive note, he is walking more and going up and down stairs now. He had a virtual physio assessment this week, so will start exercises next week and she is looking into a walker for him to build his confidence in getting around blind.

He often wants to go to the basement or deck for a "change of scenery", too.

Overall he's reacting phenomenally well to the radiation.We struggle to get him to rest he feels so well most of the time! 

One day he wanted to be in the kitchen with me and help me so he dried dishes. I've missed him being my little helper.

He's also been very upset about not seeing friends and family. We dropped some things off to a few friends last week and Ollie got to visit socially distanced from his seat in the car. This was not good enough. He wants playdates and sleepovers and Beyblade matches.

It became such an issue this week that he was begging us to have family friends over this week to do a scavenger hunt. So we arranged a socially distanced visit in the backyard (thank goodness our deck is 25' x 25'!) to enjoy some Ollie's Pizza from Gabriel Pizza (two pizzas for their family on one side of the deck and two for ours on the other). 

Masks were worn for the Scavenger hunt (prizes were Beyblades of course) to protect the immuno compromised. In the end it was  a lovely few hours for all.

Ollie even had a cat nap in.the hammock all bundled up in his cocoon.

Of course now he wants visits from his school friends, so this will be challenging to manage his expectations. We still have to keep our family safe and also to keep our dear friends safe (since Ollie and I are at the hospital daily, we are a potential risk to others if we bring something home). 

But we also have to balance that out with bringing our boy some joy where we can when we can do so safely. He hears the word no a lot and he doesn't like it anymore now than before cancer, but now we also need him to want to get well and feel like it's worth it to keep fighting the lymphoma.

So with three days off of radiation, we wish you all a very relaxing, if quieter than usual Victoria Day weekend!