"If I can do four, I can do two."

Not a lot of time to write this morning as we ready for the hospital, but wanted to share Ollie's state of mind.

He woke at 5:30 and couldn't sleep anymore. He's been sleeping with one of us since his biopsy because we are worried. He was with Mario last night. So Ollie crawled into bed with me this morning, saying he couldn't sleep anymore. So we talked about what would happen today when they do the MRI, insert the PICC line where he'll get his meds and the chemo. 

While we were doing this, Chewbacca the cat came over and lay half on Ollie's chest and began to putt. This is incredible as he usually hangs out near Ollie, by but never on him as Ollie is too unpredictable and moves all the time. Even Ollie recognized the significance of this. The cat was comforting him and making him strong. 

When I asked him if he was afraid, he asked me if he was going to have more than one needle today and I said likely two. He had four yesterday and replied, "Nah...If I can do four, I can do two." 

We got this. More later...

Joy and laughter...every day is Christmas

Yesterday after a great no-crying or fighting day at CHEO, Ollie and I risked running into Walmart to get a reward. He was thrilled to do something so normal and picked a Hot Wheels Zero Gravity race track set that was on 50% off for Black Friday (my bargain-shopping mom and aunts will be so proud). With all of the gifts that folks are bringing buy it's a bit like Christmas every day right now, but why not? If it brings joy right now, it's worth it.

He was so pleased and proud of his day and said it was the best day yet. Just a reminder that even when things are bad, we can find good and it's all about perspective. Thankfully he can generally find the silver lining.

We took it home and Abuelita (grandma) and Daddy helped him build it. We spent the evening racing, laughing and eating delicious food that kind friends dropped off. I wish Blogger would let me post the video where he is laughing in glee, but we'll just share this pic instead and trust me that there was so much joy and laughter. 

Today is a blessed day of rest from poking and prodding, so Mommy gets to begin to navigate the exciting world of leave and insurance forms. Guess the fact that I'm a public servant and  good at administration will come in handy. Never-ending fun. LOL

Update: CHEO just called and at 3 pm today we are meeting to review the tests, get the exact type of lymphoma and the treatment plan. Please send prayers and good vibes that it is only in his bump. Will update when we can.

Poker faces...

Apologies for posting so much and if what I post is upsetting to any of you as that is not my intent. This blog is partly to inform others of our progress and partly to help us in processing all of this ourselves, so we will likely post more rather than less for the next little while. 

Today we are back at CHEO and started the day in cardiology. It went well, but as a person who needs visual feedback to communicate and understand what is happening, I am finding these tests stressful. All medical staff doing tests (MRI, CT, ultrasound, PET scans, etc.) are trained to be kind yet neutral. You find yourself searching their faces and their eyes for any changes or emotion that might indicate if that image they're looking at on the monitor is normal or has something unusual in it. But they all have poker faces and it tells you nothing and you are left in limbo yet again. I would be a horrible medical employee as my face can't lie.

When we were here last week for his lumbar and bone marrow punctures, he had to have a line put in for the IV and the general anaesthesia. Naturally we tried to encourage, cajole and bribe him to let them do it, to no end. Finally there was no choice but to hold him down and it took four of us. We just repeated that we loved him and hated it, but had no choice as he needed these procedures to get well. Sadly he will get used to it as time goes on (today is the fifth time so far), but what struck me at the end was that one of the poor dedicated nurses had tears in her eyes after and I could tell she was a mama and hated that part of her job. 

Happy to report that he just had the fifth line put in for the CT with minimal fussing, no kicking or screaming or crying and it was so fast! So proud of our little superhero!

Every staff member that we have encountered at CHEO so far are angels masquerading as medical staff. Their patience is incredible and their compassion is limitless. During the bad stuff they have their poker faces on, but after they praise, they comfort and they bolster patient and parents to prep us for the next battle. Their kindness has moved me to tears so many times over the last month.

I also want to say a word about poker faces of friends and acquaintances. On Friday I was at a school event with Abby and knew that a lot of parents knew our news. Some came over and simply hugged me and then left, some came by while I was talking to others and just rubbed my back or my arm as they passed me, while others were able to stay and talk and ask frank questions and give verbal support. Believe me, I understand where you are and have been there myself many times with other families in this situation. Now that I'm on this end of it, I can tell you that every gesture is appreciated and often actions speak louder than words. There are also no right words to say right now, so if you feel you can use words just be honest and say whatever you feel.  I'm not one for swearing, but my favourite reaction to the news so far was a dear friend simply responding with the F word. That said it all in that moment.  

Hugs to you all.

The light in the darkness...

We have decided to be open and honest about this journey to avoid the misinformation that can happen when people don't know what is really happening. We also knew we'd have bad days and that we'd have to stop doing certain things during this journey and wanted people we care about to understand why.  I just want to say that the outpouring of love and support from our community has been overwhelming and beautiful. We have received more positive messages and offers of help than we ever could have imagined and are so grateful.

At first I felt awkward accepting the kind offers of people because we are so used to being on the giving end versus the receiving one, but friends and family have kindly insisted that this is our time to receive and that people just want to help so we need to let them.

For example, many of you have stopped by with delicious food since you heard the news, so our dear friend Maria started The Acosta-Pickering Family Meal Train to organize this and so many amazing people have kindly signed up to keep us fed with meals made with love while Ollie undergoes chemo treatment in the coming weeks and months.

We also know that some of you (like me) aren't necessarily the type who prefer to bring food, so we have added a list of what we need right now to the sidebar of this blog which we promise to keep updated. Please note that if we are looking for something we are always happy to buy it if you find it for us, or borrow it and return it when we no longer need it. So many of you have dropped by Lego sets, books and other amusements for Ollie in the last days and each one brings him joy at a difficult time. If you do lend us something, please put your name on it (masking tape works) so that we can be sure to return it to you!



A super big thank you to all of you for everything you are doing. Each act of kindness makes me so very grateful that we are part of this amazing community and reminds us that we are blessed despite everything.

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.