Safe arrival and Sick Kids Hospital orientation

We made it to Toronto with the help of our dear friend/honorary brother, Vic who followed us all the way in his own vehicle to make sure that we had help if needed on the journey. 

Ollie was fantastic on the road trip. We stopped only twice in out of the way places to pee and get food. I was so relieved as I worried that the journey would be painful for him.

Abby tried to put herself in a diabetic coma with a "dream donut". She wanted me to document below how she's practicing social isolation.

I was so grateful that we had Ollie's commode so he didn't have to go in public and because we couldn't find a place that was open to pee since we avoided the Onroute rest stops (which looked way less busy than they looked on Tuesday this week when Abby and I came back to Ottawa from Toronto). 

Vic drove behind us for 4 hours, helped to move us in, then hugged us all (we insisted despite social distancing as we know he and Jenna have done everything to help us to keep our family safe and together over the last 6 months and would never put Ollie at risk) and headed home to be with his own family. 

Our village is incredible and he and his family are top of the list of those that we love and trust with even our child's life. 

So we're settled in our condo in downtown Toronto just blocks from Sick Kids. In fact, here is Abby today in front of our condo building coming back from her appointment and Sick Kids is across the parking lot with the green roof. So we couldn't ask for a better location.

Earlier this week before the road trip we also used some of the money that was fundraised for us to buy equipment such as the commode already mentioned, urinals and this new lightweight transport/wheelchair, which we'll get a lot of use out of for back and forthing to the hospital in the coming months. Naturally we bought it in Ollie's favourite colour.

So at least we're well equipped for this next part. At times like this I am especially grateful to my mother who taught me to be prepared for any food emergency. We came with a ton of food, not knowing how long it might take to get groceries delivered. It's good that we did as so far I have been unable to get a date and time for delivery.  

This is just some of the food we brought! Note the chips at Ollie's request! LOL Thank goodness we have lots as a kid on steroids (part of his chemo treatments) eats continuously. A typical breakfast includes: shepherd's pie or pasta (weird, right?!) and sometimes both, toast with butter, blueberry mini muffins, some cheesies and milk! Can't imagine what he'll.eat when he's a teenager!

We also brought coolers with fridge and freezer stuff. Much of it is delicious food that you'd all made for us that we were unable to eat all at once, so we froze it and have brought your love-filled nourishment with us. You continue to support us even here and we love you so much for it!

Yesterday was our first big day at Sick Kids. It started with a 7:15 am appointment at Princess Margaret Hospital to do Ollie's radiation planning. Given it was raining/ snowing Mario decided to drive us the few blocks over to the hospital so Ollie wouldn't get chilled from being wet. We didn't want to leave Abby even sleeping in a strange place for too long, so he went right back to the condo to be with her. Naturally Google took us to the wrong door for Princess Margaret and there was no wheelchair ramp on that side. Thankfully a staff member at Mount Sinai Hospital next door was kind enough to walk us through their lobby to the other side to get access to the Princess Margaret Hospital wheelchair ramp without having to walk all around the building in the rain. Everything is under construction over there, so it's a veritable maze right now, too. 

Once we whipped through screening we found our way to the clinic. I have to say that everyone is kind to you when you are with your kid who has cancer. Given his bald and bloated head it's pretty easy to see our situation right now. 

A representative from Sick Kids met us at Princess Margaret and brought some welcome gifts for Ollie including a new radiation buddy whom he has named James to remind him of one of his best friends at school.

Ollie was anxious waiting to get in to have his sedation for his radiation planning. It sounds strange that he'd need sedation to plan his radiation, but this entailed several steps. For example, they had to make a mold of his face that hardened into a mask to be used during his upcoming 9 sessions. This is to ensure that he is always in the right position for radiation. They also tattooed a tiny blue dot on his head where the beam will aim for his head radiation. We've been joking that his dot is really an elaborate tattoo if you look at it under a microscope. Here he was shown what the mask would look and feel like.

 

It seems funny to joke about your son being radiated, but you get used to the strangest things when going through all of this. Thankfully it's low dose radiation for only a few minutes each time. He'll be outpatient for the three days of head radiation, and admitted for the three days of total body since he has to have two sessions a day for those days.

Radiation is now planned to begin April 9 and end April 15. Stem cell transplant is now scheduled for April 16. 

In recovery after his radiation planning, as usual he was ravenous. He had asked for Timbits, so that's what he got. Normally patients don't want to eat right after anesthetic, but not this guy. The nurses marvel about how much he can eat right after.

After this we were escorted back over to Sick Kids Hospital underground to head to a pulmonary function test to see how his breathing was post chemo sessions. We had 25 minutes to kill so he went to Subway at Sick Kids and had a ham sandwich, a cookie and chocolate milk. LOL

 

Note: we are still in possession of adequate supply of antibacterial wipes and are wiping EVERYTHING down before we touch anything in public. Plus wearing masks and gloves everywhere, shedding clothes to put in laundry as soon as we get back to condo and constantly washing and sanitizing hands to stay safe.

His breathing test went well, but the docs said it is hard, so he complained of shortness of breath all morning after, despite the doctor checking him out at his consult with his bone marrow transplant doctor, Dr. Ali. He also had bloodwork done. 

Just like at CHEO there is a lot of waiting. Unfortunately we have not yet met any Child Life Specialists unlike Ottawa where you meet them from the start.

At the end of all of this, Ollie was quite exhausted and begging to go "home"'. So Mario brought Abby to the hospital and took Ollie back to the condo. As we were making the switch if kids in the lobby of Sick Kids, we could see that this was concerning too many staff. I explained our situation that they are both patients...One the recipient and the other the donor and now I was staying with the other for appointments. They thanked us for our patience as I went through screening again with Abby this time.

Abby's appointment was simply a chat with her bone marrow transplant team where they confirmed all her other tests came back excellent. She's an excellent student in every aspect of life it seems with normal or above average results in everything. They confirmed she was still prepared to do the donation and talked to me about consenting to store her stem cells for her brother as they are now freezing them two weeks prior to the transplant, just in case. This is the new protocol for all stem cell transplants given COVID-19. Interestingly enough Abby even talked about donating again when she's older to save someone else. After all she explained, if she could save her brother, she could help someone else without a match in the future, too. Someone else so didn't have a brother or sister who could save them. My heart nearly burst. I have said before that my children are the most important thing I'll likely bring into this world and leave behind and they are proving me right daily.

The last thing was Abby needed to leave a urine sample for testing. She'd never done this before and had a really hard time. She's a camel at the best of times and can hold it all day! So we went down to get some lunch at her favourite, Jimmy the Greek (right in the hospital near the Tim Horton's!), drinking tons of water. When I tipped the people at Jimmy the Greek and thanked them for risking themselves to feed us, they were shocked and so happy for our acknowledgement. Please be kind to all people serving us through this pandemic. They definitely don't make enough to risk themselves and their families like this, but have few options.

After lunch, she was finally able to pee. Trying to deliver it back to Sick Kids in the clinic was bizarre. We were told by reception to take it back to the Blue Pod (every corner in clinic has a colour). But no one there seemed to know Nicole nor care much to help us figure out what to do with it. Another example of why smaller like CHEO is sometimes better. We finally left it at reception despite their protocol, asking them to page Nicole in her meeting to come and get it. 

We walked the two bucks back to our condo and had a lovely and quiet evening eating, doing laundry and watching tv. The simple life never felt so good! Two days off doing nothing now and then back to the hospital Thursday for both of them for Ollie's lumbar puncture and Abby's first injection of the GCSF which I'll explain more in a future post.

For now, know that we are together, safe and as happy as we can be right now. Please stay safe and stay home as much as you can. People like Ollie are depending on you. Love to all!

Wishes and Miracles

Ollie took this pic. Santa came to the CHEO Medical Day Unit (MDU) and gave me one of my wishes early this year...scroll down to hear what it was!

Ollie got to see Santa after all this year! 

Every day in MDU there is excitement. You'd think that with so many sick kids there it would be a depressing place, but there is a happy atmosphere there that defies logic. It's like you are being wrapped up in a womb, enveloped in warmth and comfort despite the cold reality that cancer forces you to face daily. If Disneyland is the happiest place on earth, MDU is the happiest place at CHEO for the same reasons. Everyone bends over backwards there to make it a positive and rewarding experience for families. 

Today it was Christmas in MDU. We were there for some blood and kidney tests. Santa was there, accompanied by Officer Amanda from the Ottawa Police Service. The Ottawa Police had provided presents wrapped and labeled (Boy 8-10, Girl 4-6, etc.) for every kid there today and they're doing it again all day Thursday. I have always had a lot of respect for the men and women who keep us safe in this city and it today it got bigger. So maybe buying cancer kids presents at Christmas is easy enough to do and send, but sending a Santa and an officer to help was classy. And the officer was awesome with the kids and treated them like normal kids. Also surprisingly unusual as a lot of adults I have come into contact with recently don't know how to treat sick kids.

Excited to open a present from Santa (courtesy of the Ottawa Police)!

Ollie got over $100 value in Lego and I was blown away at people's generosity once again. There was a lovely card that made me tear up, wishing him a healthy 2020 and that he feels better soon. 

Playing a trick on Officer Amanda of the Ottawa Police with Molly Penny's help!

Officer Amanda showing Ollie that her pink handcuffs were actually real police handcuffs and him trying to escape!

We also saw our oncologist, Dr. Pinto setup was super pleased with Ollie' s response to the chemo, noting the amazing reduction in his bump already and remedying on how terrific it was that he was still super energetic (as he bounced around the room asking a million questions and bouncing an actual ball on his hand too voraciously). She explained that although they had originally slated him to start round 2 of chemo being admitted to hospital on December 24, they discussed pushing that by a few days and given the number of others scheduled to be admitted them, decided he is strong enough to wait until December 30 to start round 2. So my Christmas wish came true and we get to be home safely with our family together and wake up Christmas morning in our own beds to see what Santa has brought. Christmas miracles do exist and we are so grateful for all of the positive energy and prayers being sent our way, so please keep them coming in the new year. 

More soon...

12 Days BEFORE Christmas

I have been trying to post all day, but we've been so busy! I will post more when we have time, but tomorrow Ollie and I are being admitted to stay at CHEO for 12 days for his first round of chemo. I will share more details soon, but we send our love and gratitude to all of you for your love and kindness. 

Here we are at CHEO today building a Mousetrap while we waited for tests.

The Bumpy Road to Diagnosis

In August 2019 we were just your average family enjoying a warm and busy summer. One day early in August, Abby pointed out what appeared to be a round sunburn on Ollie's neck where his shoulder met his neck. We assumed that was exactly what it was, so when it appeared to become an oozing boil we took him to the pediatric clinic. The pediatrician said it was a bacterial infection (not a sunburn at all) and that it happens because we all have little bugs that live on our skin and sometimes we have a reaction. Off we went with a round of antibiotics and his suggestion to see our own pediatrician in about 10 days time for a follow-up.

So he took the antibiotics, the sore closed up and the bump appeared to reduce to a small skin-coloured bump. By the time we were able to see our own pediatrician due to vacations and such it was early September.  By then the bump had grown and had started to turn red again. Ollie's pediatrician indicated that he needed a surgical consult at the Children's Hospital of Eastern Ontario (CHEO), but was unable to determine who to refer us to immediately. In the meantime, we saw a family friend who is a naturopathic doctor to get her opinion and see if there was anything else it might be or anything else we might do to get rid of it. She identified that there was also another bump in his neck that was likely an enlarged lymph node. She advised us to seek an ear, nose and throat (ENT) surgical consult with CHEO and not to wait, but to call or email them to figure out how to get this referral soon.

I emailed CHEO and got details on how to get our pediatrician to get them the referral, then called our pediatrician's office who promptly sent the referral. Within two days we had heard back from CHEO and within 4 days of sending the referral we had an appointment in their ENT surgical clinic. They took it seriously from the start. On October 22, 2019 we had our first meeting with the head of ENT. She and another doctor felt if it was a cyst it was atypical and thought it might be Tuberculosis or a relative of TB because it appeared to be infected. They decided to order a bunch of tests and thus began a whirlwind month of tests where poor Ollie was poked and prodded every few days.

Ultrasound identified a mass and the technician and the radiologist asked if we had cats, which we do. They suspected cat scratch disease. The blood tests we had next revealed that it was not cat scratch, lyme disease, malaria or any other number of possible infectious diseases. It did reveal that Ollie had somehow had mononucleosis at some point, which apparently is more common than we imagined and had depressed his immune system. The TB test was negative, but apparently that didn't rule out other possible relatives of TB. Next we had x-rays and then an MRI with dye injected. Many tests caused anxiety for poor Ollie who hates needles in particular. Throughout it all the staff at CHEO were incredible and I was so very grateful for their patience and kindness despite Ollie's fear making their jobs more difficult.

The bump had become like an entity itself and had been comically named "Sir Skateboard" by Ollie. Given I was in full-time french training during this time for work, I found it ironic that the word bump in french is "la bosse" because it really did appear to be the boss...controlling all of us and our future.

After all this we still didn't know any more, so on November 11th instead of attending the kids' Remembrance Day Ceremony at school as usual, we were at CHEO for the biopsy of Ollie's bump. The biopsy went well and during the two minutes of silence for Remembrance Day we were in hearing from the surgeon about his findings. Although they had all suspected it was infected, there was no infection and only mass. We were told we would have results within two weeks. Thus began the agonizing waiting.

During this time I got access to Ollie's MyChart online and was able to see the reports. The Ultrasound and MRI mentioned a "slight" chance of t cell cutaneous lymphoma so I began to research that and then pray harder that it wasn't that and I was just being paranoid in thinking it fit.

On November 18 we had his post-op to check the incision, but there were no results, so we assumed that we'd hear back later in the week. By the time we got home CHEO had called and asked us to be back at 7:30 the next morning to meet with the doctor before her 7:45 surgery. She suggested Ollie wait in the vacant waiting room with his tablet and the receptionist as we talked and I knew that was not a good sign. She was very kind when she told us that it was absolutely lymphoma and suspected to be something called Anaplastic Large Cell Lymphoma (ALCL) although they were still waiting on the specific pathology reports to confirm it. She apologized profusely that she could only arrange last minute for us to see the oncologist two hours later that day (without an actual appointment so she had obviously called in a favour and when we later arrived at oncology the receptionist wasn't even aware as the doctor had arranged it directly).

So we went to the cafeteria and I pushed food around my plate as Ollie watched his tablet and Mario and I started puzzling out what we would need to do and what this would mean. We knew that no matter what he was going to get through this and failure was not an option.

This post is longer and more detailed than I intended, but so may people have asked how we got here and in the words of Mark Twain, I didn't have time to write something shorter.