Like having a newborn all over again...

Breakfast of champions...

Parents, remember that feeling from when your babies were infants and you were so sleep deprived and suddenly one night they slept through the night and you awoke refreshed and then immediately panicked because they didn't wake and so there must be something wrong with them?!

After a solid night of sleep with Ollie having no fever and his PICC line finally fixed, I woke at 7:30. It was an 8.5 hour sleep for me where I woke only twice when I heard the nurse checking his vitals and when he woke to pee once. He slept 11.5 hours! 

Naturally I immediately checked that he was breathing, just as I did when he was an infant and then my logical brain reminded me that they're monitoring everything and alarms would have gone off if there were problems. 

Unfortunately, he did feel sick when he woke and since he had thrown up his dinner last night because he seemed fine and we didn't take the Gravol last night, I asked a nurse to give him something preemptively today. Sadly we got it too late, so he did more throwing up this morning, but he says he felt better after and the meds quickly worked so he could eat some toast. 

Mario was here last night while Abby was at youth group bowling and just trying to be normal.  This morning we were messaging. Them having morning snuggles there and us doing same here while exchanging pictures. It felt a bit like when we were in the hospital having Ollie and I was in the hospital for four days after the c-section while Gamma was home with Abby. That was our longest separation as a family to-date.

Inter-family communication...

Thank God for texting, video calls and social media. I can only imagine how difficult all of this was before technology long ago like when my dad and his siblings were young adolescents and their dad had cancer of the larynx. 

It's hard for folks who have never been around a cancer patient undergoing chemo to understand how prudent it is to avoid bacteria and potential viruses. The chemo basically kills Ollie's immune system meaning that any little bug that would normally only mean a runny nose or sore throat could land him in isolation and require other meds, blood cultures, oxygen tents, etc. In fact CHEO does not permit any kids under 14 to visit from November to March during virus season (siblings of patient excepted, but only if they're well) to keep all kids safe. So we can also video chat or send photos if anyone wants and Ollie is feeling well enough. His teacher has already tested an online video chat with us and it is ready to go!

Speaking of his teachers, we were thrilled to have a visit today from St. G teachers and friends, Mrs. Didiomete (Ollie's actual English teacher this year), Mrs. Hatoum (On Parent Council with me and Abby's former grade 3 teacher) and her daughter Gabby. It really brightened Ollie's spirits and he laughed a lot. I cannot give enough kudos to his amazing school and the selfless people who work there. I felt this way before all of this and now I know that God intended us to be among his angels on earth to help see us through the darkness. 

Ollie being silly with Mrs. D, Llama Llama Blue Pajama, Gabby and Mrs. H.

Mario and Abby are coming shortly and Mario will stay tonight with Ollie while I spend some special time at home with Abby. This is all an incredible balancing act, just like it was with our newborns...trying to puzzle out our roles in a way that is complementary and makes us the strongest team. I have to say that when the kids were born Mario really surprised me with how tender and helpful he was with all of us and those same incredible qualities continue through this situation. Then and now there have been so many moments where I was so happy that I married my strong, yet loving partner. After 15 years together (11 with children), we have grown together to adapt to whatever our new situation is and I am so thankful that we are in this together.

Finally, there's the fact that I am now off for at least the 6-8 months of his treatment, just like I was on maternity leave. Mario and I have terrific employers do have told us to take whatever time we need and not to worry about anything there. I am off as the primary caregiver and M is taking time off for big stuff.

Ollie: 2 vs. Lymphoma: 0

Yesterday was a jam-packed day including: 

- MRI with contrast;

- Procedure under general anesthesia to put his PICC in  - this is a semi-permanent line in his arm where they administer chemo and other drugs and take blood whenever possible to minimize his need for more pokes/needles; 

- Injection of drugs into his spine to keep lymphoma permanently out of there; and 

- Actual chemo treatment itself. 

Exhausting by anyone's standards, but he got it done.

Nurse Robyn and Nurse Angelique were Team Ollie on day one of chemo!

It was a long night, not because of the chemo itself, but the side effects of the PICC line constantly kinking in his arm and setting off alarms and a fever that occurred after the chemo treatment. Fever is apparently normal and his body still has enough immune system left to fight it with simple Tylenol, but fever is a big warning sign as chemo progresses and in future will require more blood culture tests and antibiotics. 

At 2:30 am we had to have a needle to do a blood culture to ensure that the fever wasn't a serious bacteria setting in. Lots of anger around that when he refused to cooperate and had to be forced. I was very grateful that we're in a room alone right now. After that and some Gravol to stave off a bit of nausea, he slept until 9:30 am as did I, thank goodness.

Today he did his second chemo treatment and felt well enough to walk over to the Sens Den to play a bit of mini pool that he had tried yesterday after the first treatment. 

Our Interlink nurse also stopped by to fill out some forms to join Candlelighters (https://candlelighters.net/) who will give us a monthly parking pass and other resources as needed. We were also told that he will get a Wish from Make a Wish (https://makeawish.ca/), so there is something to look forward to at the end. The resources are incredible and possible thanks to the generosity of people in the community. This is a great example of another tangible thing that you can do if you feel like you want to help, but aren't sure what you can do. Consider making a donation in Ollie's honour to help us pay it forward to other families battling childhood illnesses including cancer. 

So we're signed up for some services now including 4-5 hours of tutoring a week to help him keep up with his classmates so he can rejoin them for grade 3 next September. We are also looking at a cool karate program called Kids Kicking Cancer which Ollie is enthusiastic about and may help him to manage the anger associated with a lack of control of his life and his, body right now, which may be made worse by steroids that are part of the chemo therapy.

One last note before we sign off. Last night we were visited by a young woman named Bria and her parents. She was celebrating her one year anniversary since her own diagnosis and delivering a gift of a warm and cozy blanket to new patients like Ollie as that is what she found comforting when she first started at CHEO and a lovely $20 CHEO gift card to parents to get a warm meal. Her family was lovely and so positive. I asked and she told us that she gets to "Ring the Bell" in April and I told her I hoped we would be here that day to cheer her success. Kindness and positivity abound here and it is yet another sign that we are blessed. Big hugs to all!

 Ollie with his cozy blanket from Bria.

Faith and Sacraments

I have a strong faith. I was raised Catholic and as many of you know, went to Catholic school from kinder to the end of high school. I was a lapsed Catholic and four years ago felt a strong need to reconnect with my faith and to have a strong faith-based community around us. I guess we were being prepared for this moment.

Our kids go to Catholic school and the kindness and love we have received from teachers, administrators and families there over the last two weeks has been so touching. They've filled up the meal train so quickly, sent gifts and cards and positive messages. They are loving and supporting Abby during this tough time and it makes my heart sing. Each and every one lifts us up and makes us feel loved and so grateful for the village we have helping us to raise our children. 

I have been helping with the youth ministry a bit over the last 3 years with our amazing youth minister. Abby is preparing for confirmation in February and Ollie has been preparing for First Communion in April, but we'll now have to postpone that Sacrament until next year. He did get a Sacrament this week, though...

Our priest has been aware of the seriousness of our situation for weeks and was praying at my request. Last week we put Ollie on the prayer intentions list so everyone could pray for him. Abby and I were at mass with friends last Sunday and none of our eyes were dry when they read his name. They're also saying a mass for him tomorrow at St. George. 

Our priest also offered to come and give him the Sacrament of the Sick before chemo starts and to my surprise, Mario (who believes, but is not super religious) immediately said yes that everything helps. We explained to Ollie and he agreed that it was okay to do the Sacrament. 

Monsignor Hans came to our house last night and all four of us sat at the dining room table where he had set up a tiny altar. The blessing is like a mini special mass. Monsignor knows our kids from school and church and was extremely gentle in explaining to them what everything meant and what each part and symbol represented. He explained that it is a very special blessing and the ultimate fulfillment of baptism and is very special because most of us never have that Sacrament, so now Ollie will have more than most other people as he grows up. The kids were so reverent. Abby and I were a bit teary by the end after we all prayed the Our Father together. There is comfort in faith and ritual and knowing that God's special blessing has been given to my boy. It's certainly not the Sacrament we expected him to get this year, but I am glad he had it. 

When the kids departed Monsignor stayed and asked us many questions about the diagnosis and treatment. He told us that based on his experience ministering to families like ours, the road will be long and hard and we will feel darkness at times, but we must remember that He is with us and the entire Parish is praying for us. He left promising to visit Ollie in the hospital. Over the last four years I have come to know our priest a bit better. He is a stoic German with strong views on the Church, but he knows the importance of creating a strong community, is so very kind and always there when you need him. 

While I am Catholic, I have friends of all faiths praying to their higher power for Ollie. Others have told me they don't pray but are sending positive vibes or lightness his way. It all helps to build our faith in God's goodness and that our boy will get through this and be well. 

Apologies for the long post, but one more important thing happened today that I believe is related. We were waiting in the Medical Day Unit (where Oncology is located) for the next part of his day to prep for his PICC line insertion and for them to inject the first chemo into his spine to keep the nasty lymphoma out of there for sure. As we waited, Molly the clown was there and could see our stress and just kept giving us winks and high fives. At this time a little boy about a year older than Ollie ran over to Molly to high five her and exclaimed excitedly that it was his turn to ring the bell today. 

I explained to Ollie that kids that are brave warriors and beat cancer have a special ceremony at the end to ring the bell and have everyone cheer. A bit later when we were rolling him to the OR, there was a massive joyous crowd of family and CHEO staff around the bell with the beaming boy waiting to ring it. Everyone was cheering including us and Ollie said he's going to get to ring the bell too when he's done chemo. 

There are signs of hope everywhere.

Ollie with "Mr. Llama Llama Blue Pajamas" that his sister bought him so that he knows she is with us.

Vacation and cocktails...

This morning while getting ready to be admitted to CHEO for his first round of chemotherapy, Ollie saw me wheel out his suitcase and joked, "I guess we're going on vacation!". Ya buddy and there will be chemo cocktails. LOL 

All jokes aside, he will be given a cocktail of drugs including the chemo, steroids to reduce inflammation, anti-nausea meds, hydration, antibiotics to avoid pneumonia and a diuretic to keep his bowel movements normal. Maybe they'll throw in a little umbrella and fruit...

They've explained that this first 12 days they'll be shocking his system to kick start the chemo and attack it. Ollie and I giggled the other day over the image of his lymphoma cells being attacked with laser guns and disintegrating, leaving those dead cells as powder (mostly reduced to sodium), which they then flush out of his system so he doesn't turn into the evil villain "Salt Man!". 

During these 12 days, one of us will be with him 24/7..mostly me with Mario visiting (with Abby when possible) and staying a night with him every few to give me a break, to give Abby and I time together and to give Daddy and Ollie time together. 

After that, we'll be home and he'll continue taking steroids all the time and antibiotics on weekends. After 21 days this round is over and they test his levels for a week or so and decide if he's strong enough to move on to the next round or if he needs time to get his levels up. They have told us that he will likely need blood transfusions and platelets at different points like that. 

On this note, for those of you asking what you can do, please give blood wherever you are, if you are able. Obviously Ollie won't get YOUR blood, but some kid like him will get it, while he gets some other generous person's. You can find out where to donate at: https://blood.ca/

More soon...

"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...

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.

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.

Oncology, Wii Games and Storm Troopers

Life becomes surreal the moment that you get a diagnosis that you have a critically ill child. There is no time to process or feel all of the big feelings as you are reeling and trying to learn everything you can about your new reality on the same day that your child is diagnosed.

So we stumbled into the Medical Day Unit at CHEO where oncology is housed and waited to hear how our life as we knew it would completely change. While we waited Ollie spied a Wii machine in the corner and we kept ourselves busy figuring out how to work it in hopes that we could do one thing to make things normal for our active 7-year old who aside from a crazy bump on his neck had no other obvious symptoms of cancer. He and daddy got it going and it was a blessed distraction.

Eventually we were shown into an exam room. There we met our new support team including the head of oncology, our assigned doctor, our social worker and our oncology coordinator. We began talking and asking questions when Ollie interjected, "Are we just going to stay here and TALK all day?!" So the social worker took him back into the waiting room to play more Wii and while there he also got to see a bunch of Storm Troopers who were visiting that day. All in all a pretty great day for him...other than the diagnosis that is. I'll write more on this another time because CHEO really has an incredible way of making the darkest times fun for kids.

We spent hours with the oncology team and they let us ask every question we could think of. We're still waiting on the final pathology and tests to confirm the ALCL and therefore the exact treatment plan, but we know that they are going to start him on chemotherapy and we are looking at an intensive treatment period of at least 6 months. The good news is that it is treatable and kids generally respond really well to treatment.

Eventually we brought Ollie back in and they helped us to explain it all to him. It all became too much for him even though his doctors were so positive and said that they were going to cure him and he began to plug his ears and talk very loud, which the social worker said was normal escapism. Unfortunately we had to cap off a hard day with a blood test to check his levels to see if anything had changed in the month since we had first had a blood test at CHEO.

Finally, we got to go home. I spent a good part of the rest of the day in tears as I texted and called family and close friends while Mario watched movies with Ollie. I informed the school administration team and the kids teachers by e-mail because I knew I'd have to pick Abby up from school and didn't want them asking me about the results in front of her and risk having a breakdown.

When I arrived at school and was waiting for Abby, the office administrator and two teachers that my children have had already knew and just hugged me and told me they were all with us and we would get him through it, then quickly scattered when Abby came in. When we left and I told Abby the news at her insistence before we got home, she was inconsolable. It was the second time that day that my heart split in two. When we both calmed down, we agreed that this will be our greatest challenge, but we will overcome it, and then we put on a brave face to go home to our new normal.

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.