Acceptance, Bumpy heads and Emotional Hangovers

The thing I love best about our boy is his ability to put bad stuff behind him and keep going forward. He is always very apologetic and contrite after having a temper tantrum or being unkind or difficult. Many of his teachers have told us how unusual it is for one so young to even be aware of the impacts of his actions on others. This is what makes him normally so kind-hearted and empathetic. 

So after difficulties yesterday, he was apologetic, loving and kind today. It has been a quiet day just watching movies. His fever is still intermittent, but the huge issue is his low neutrophils. These are white blood cells that help to fight infections. If those don't go up, even if we get rid of the current infection, he'll be even more susceptible to the next one and we'll land right back in here. So we're waiting and hoping. 

And I am coaching Ollie to be prepared if we can't go home tomorrow and need to stay longer. The goal is to get well and hopefully be home for Christmas.

I can tell the coaching, change management and too a degree desensitization is working, because today the doctor suggested if his levels aren't up tomorrow we could try a medicine by injection that could raise them. A few weeks ago Ollie would have immediately started fighting the idea and had a massive melt down over the idea of another poke. Today he simply said, "If it gets me home faster, I don't care...I'll do it." Dr. Pinto was shocked and told him how proud she was of him and noted how far he's come in such a short time (because weeks ago four of us had to hold him down to get a poke).

He also started losing his hair more obviously today. He was pretty okay with it, other than the fact that it made his neck itchy. Mario has been growing his hair to shave it off when Ollie is ready. So I guess we'll soon see if the Acosta men have bumpy heads or not. Of course Ollie laughs and says daddy is already almost bald so it won't be much different for him. Just another cancer milestone we're going to pass through on this journey. 

I have a headache today and feel like maybe it's an emotional hangover from yesterday. Hopefully tomorrow will be better. 

I was also feeling a bit, "why us?!" today until I saw this in the kitchen, reminding me that so many of us have to bear it and do survive it.

On the home front we are grateful to dear friends who kept Abby overnight last night, and took her shopping today and to another who was at our house today to oversee duct work cleaning and kindly folded laundry. Many others checked in with me over the last two days to be sure we were doing okay, offered to run things to the hospital and dropped off special treats. Every little gesture and kindness is acknowledged and appreciated. 

We'll keep you posted on his progress, but are going to bed early now in hopes that we're both much better tomorrow. Sleep well!

Intuition, Fever and Fear

This is post number two because today's events warranted their own post.

Last night everything was fine. Ollie went to bed snuggling with me in his new twin over double bunk bed. He seemed warm to me, but did not have a fever. As I lay with him and he fell asleep he was restless and very sweaty. I got up and prepared Abby's lunch and did a few things, going back to check on him a few times. I told Mario I was going to bed and felt I should sleep with him as I fear fever in the night right now and had a sense something was off. 

Fever requires immediately going to CHEO Emergency because his immune system is shot since the chemo and he is now what they call neutropenic. This means that his white blood cells (WBC on a blood test) are very low and any illness is dangerous because the body has no ability to fight them off. 

So my mother's intuition told me to sleep with him and several times in the night I woke to a very sweaty kid and took his temperature. Each time it was normal, but I knew something was not right. When we woke about 7:30 to get ready to go to CHEO for his usual Friday PICC dressing change, he felt warm, so I took it again and it was a bit high. I waited a few minutes until he was up and had cooled down from the warm covers and took it again. Higher again this time and definitely a fever. So plans changed rapidly. I called our Oncology Coordinator to let her know and she told me to come to Emerg and she'd alert them.

I sent Abby and Mario off to their regular days, promising to let them know any news. Ollie was otherwise well and cooperated to get to CHEO, walking himself into Emerg. Once there we were triaged immediately and shown into an isolation room to minimize our exposure to anything else. That's the fastest we have ever been triaged at CHEO. At least cancer patients get VIP emergency treatment. LOL

We were quickly visited by nurses and a doctor who checked him all over for any sources of infection (nothing obvious). Everyone was gowned and masked as a precaution. Bloodwork was drawn rapidly, a urine sample taken, a team came down to change his PICC dressing, a second doctor from oncology arrived to do more checks. IV's of antibiotics and fluids were started. 

The doctor told me he'd have to be admitted for 48 hours for meds and observation. Admissions arrived and had me sign forms to admit him (again so glad to be overinsured and always paid for the full hospital coverage).

I guess I'm getting used to all of this as I found it all comforting because it reminded me we were in the best place for him to be safe, whereas weeks ago it would have elevated my stress levels. 

What did stress me out was having to tell him we'd have to be admitted again. To say he took it badly is an understatement. Sadness, anger and complete defiance ensued. There was yelling, wall punching and absolute insistence that he was going home because round 2 of chemo wasn't starting until December 30. Despite everything I could not calm him by myself and it took me, two nurses and a child life specialist to sooth him and bring him down to a manageable level. 

One of the ways they did this was by talking about what made him angry and suggesting we make a punching pillow and draw a target and write those words on it. 

Luckily, one of the nurses who came by was also our POGO Interlink Nurse, Graham who had stopped by our place on Wednesday to help with paperwork and had bonded with Ollie over Beyblades. Graham had also gone into the school earlier this week to teach his and Abby's classes about lymphoma, so we recognize that he has done a lot for our family this week. So Graham also engaged Ollie in a discussion about Beyblades, taking his mind off the fact that he was being admitted. 

The thing about Ollie is he is passionate like Daddy, but pragmatic like Mommy. So after the room had cleared, he and I had a good chat about how powerful his brain is and if we prepare for the worst and hope for the best things generally turn out fine and we aren't disappointed constantly. He asked me what the worst was and I said we'd be in hospital a few days, but maybe less and we could still hopefully make it home for Christmas. Then my bright, sweet pragmatic boy said he had done eleven days already and two days wasn't bad and we could do it. I pray that it's only two days and I don't have to disappoint him and ruin the lesson.

So we finally got a bed on 4 North after lunch and with a new positive attitude, we arrived in our new room. To his delight it's a private room (we were alone in a double last time) and has extra amenities like our own mini-fridge (please send wine and cheese...LOL), a PS4 and TV for it in the room (we borrowed a communal one from the playroom last time, but apparently these were donated for isolation rooms) and the crowning glory...his own tub (he had to have a bath down the hall last time and found that unacceptable...imagine having a bathroom in your room with no bathtub!)! He exclaimed that this really was at last more like a hotel.

No sooner had we settled in then a special visitor arrived to bring some presents and spread some Christmas cheer. See below...

Got to meet Brady from the Ottawa Senators who was even a good sport when he learned the Sens are Ollie's number 2 team and the Leafs are his number 1 like Daddy. 

Now Ollie is napping and I am drinking a coffee from Keurig pods that some Christmas angel left in the kitchenette for everyone and thanking God for them and the fact that there is even still some sugar and cream that I left behind when we left here not quite two weeks ago.

None of this is what we planned, but as a strategic planner, I know the importance of an "evergreen" plan that is constantly being adapted to accommodate changes and also of always having a Plan B and sometimes even a Plan C. So we'll hunker down and watch our new subscription to Disney+ this weekend and pray that by Monday we are home and cosy again. 

Sending you all love and prayers for a lovely weekend before Christmas. Please be safe, be good to each other and remember that the perfect outfits, food, gifts and decor don't matter this or any Christmas. It's being wherever you are with people you love and enjoying time together. 

Boxes, Bunk beds, Buzz and Battles

The last few days have been eventful, so I'm going to post two blog posts today.

On Wednesday we had a visit from our POGO Interlink Nurse, Graham Robinson won offered to come to the house and help us with some paperwork and planning for my leave at work. I am so fortunate to be a federal public servant and my employers are phenomenal. I have enough leave banked to be off paid until February 24, and then will be using services like EI to help out. We are also so fortunate to have been advised by our investment and insurance advisor long ago to buy the policies that have critical illness insurance for the kids, so we will have extra money coming from that which will help with the loss of income since EI only pays 43% of my salary.

Ollie showing Graham his new Beyblades.

Ollie also got a new bunk bed on Wednesday that had been planned long before diagnosis, but the timing is great to keep things interesting when he's home so much.

 Building the new bed with Daddy.

Typical kid enjoying the box more than the contents...

Finished product with upper bunk already messy from playing up there!

Thursday I had to go Christmas shopping for new washer and dryer because of course the bearings on the current set decided to die in the last two weeks. Merry Christmas to Mommy and Daddy I guess! LOL

On Thursday afternoon, it was the kids' Christmas concert at school. Since it was Abby's last one given she's graduating this year, we arranged for Mario to work from home and be with Ollie so I could attend. Her performance choir did a great job, as did her class.

St. G Performance Choir

 Abby's Grade 6 class

A few days before the concert Ollie's teacher, Mrs. Didiomete suggested he might want to join the concert online via Google Hangouts. So Mrs. D, the principal, Mrs. Philippe and our School Council Chair and dear friend, Siobhan organized the technology to be set-up at the concert so Ollie had the best seat in the house (while mommy arrived late and was standing at the back! ;-)) and could watch everything from the comfort of home. At the beginning Mrs. Philippe even had everyone at the event say hello to Ollie! It was very touching to have him there and when his class's turn came and they sang their hearts out, I know he was glad to see them all. 

 Ollie was in the laptop on this stand with his teacher checking in from the background and Siobhan in the foreground. 

We are so thankful for the thoughtfulness of the St. G teaching team. They are working hard to make sure he still feels part of the school despite his isolation this year.

We rounded out the busy day with a family NERF war that evening. Mom, Dad and Abby are now his primary playmates, so playtime at night is important and frankly, the laughing together always makes us all feel better.

Acosta-Pickering Family NERF Wars...where safety never takes a holiday!

Stay tuned for post # 2 of the day shortly...

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...

Hail Mary and Learning About Lymphoma

This little dabbing elf is home and doing really well as we rest and wait for round 2.

It has been a quiet and uneventful few days. We had a quick visit to CHEO Friday followed by a dash in to Walmart with Ollie wearing mask and gloves to avoid exposure to viruses. All so he could be a normal kid and choose a few new Beyblades with Christmas money received. This is our new reality. We are unable to take him into highly populated public places where he might get a minor cold or flu bug that for anyone else would be uncomfortable, but for him could land him in a serious illness with isolation in hospital because the chemo is killing his immune system. So many kind friends have offered to bring their little ones over to play and it breaks my heart to have to explain that we can't risk the exposure to kids we all love and miss playing with. Please don't forget about us, because Ollie will be back to play as soon as cancer has been kicked out. To this 

end, his teacher Mrs. Didiomete kindly pointed out to him in a recent online video chat with the class that he is still part of the class and they have kept his desk there to remind them everyday. My eyes are leaking...😭

So for the meantime we are trying to make some new friends at the hospital who are in the same situation and through activities such as Kids Kicking Cancer, a martial arts program for kids with cancer, which Ollie is eager to try this week. 

Abby is dealing pretty well, but has found it tough sometimes to explain to kids that cancer doesn't automatically mean that her brother is dying. The kids are empathetic, very well meaning and truthful about their thoughts, not realizing how tough that might be for her to hear. Fortunately, our Interlink.Nurse from CHEO went into the school today to Abby and Ollie's classes to talk about lymphoma and to allow kids to ask their questions. He explained that Ollie's cancer is highly treatable and he is expected to come back next year and what friends can do to help keep Abby and by extension Ollie safe as he goes through treatments.

It takes me back to Abby's grade 1 class where another St. G family (whom we are grateful to know) had done the same when their son had leukemia and Abby was in his sister's class. It was the first I had heard of their battle and it touched me deeply. This family bravely fought and won their battle with leukemia and have been supportive of us on our journey. I remember asking the mom after they kicked it how you do it when it's your child and she told me you just do because there is no other option and you find strength you never thought you had. She was totally right. They give us hope and understanding at a time when we are often unsure and we are very grateful to them.

I am also learning a lot about Lymphoma. I never imagined I'd be so interested in blood counts, test results and medical procedures. Change forces us to learn new things and grow in ways we never expected. 

Last night Abby's choir sang in an Advent Caroling event that our parish puts on. 

The St. G Performance Choir (including Abby) in the Advent Caroling event at St. G church.

Abby made her debut doing a reading at church. As I sat there watching her read I was so proud of her and then overwhelmed with emotion that she is handling everything with such grace publicly for one so young. She has had her completely justified moments melting down over all of this, but mostly she's just stepped up to be a better sister and daughter over the last weeks. 

All of the readings were about the coming of Jesus at Christmas. Naturally, Mary as his mother features heavily in these stories. I've never felt so drawn to her as I have in recent weeks. Even as a person of faith I marvel that she agreed to bear God's son, knowing full well that He was the savior and would one day be sacrificed to save the world from sin. 

I have prayed to Mary as a mother in these last weeks, asking her to give me strength to bear all of this. One night after Ollie's bone marrow puncture when he was in a lot of pain, Mario (who believes, but is not very religious) even suggested we all.pray the Hail Mary together and she carried us all through the pain. She is sending me her strength in ways I never imagined. I know in my heart that God is good and will save my son with the help of medicine. I have faith that He loves me and understands that as a mother I cannot accept anything other than a full recovery and a beautiful life for him after this. This feels like a test for all of us, but fortunately I've always been an excellent student and aced tests and I'm not about to fail now. 😁 

Mario is stoic as always. He has moments of emotion when friends make overwhelmingly kind and unexpected gestures to help our family. He is the strongest teddy bear around. 

Overall we are all doing pretty well, all things considered. We're resting up and trying to enjoy every moment of being home together to help us get through the next round. Thanks for your continued thoughts and prayers.

What we need and how to contact us

A few of you reading the blog have said you can't see our list of what we need or the contact us form. 

If you're using a mobile version, scroll to the bottom of the post and select the full web version of the blog and you can see the list on the left and the contact us form at the very bottom of the page. 

You can also reach us through e-mail, text, messenger, or phone if you have those for us. I will get back to you as soon as I can. We appreciate your thoughts and prayers!

Home is our refuge...

This is a fave t-shirt of his that Mrs. Hatoum gave him when Abby and friends worked the Lemonade Stand for Cancer last spring. Ironic that the very organizations we were all raising money for mere months ago are now supporting my family. 

We have enjoyed three beautiful days at home without having to go to CHEO and we all feel more ourselves now. Ollie is feeling great physically and mentally, but is starting to realize that this journey will be somewhat isolating for him because his world will mainly be the house and the hospital. This is to limit his exposure to potential viruses.  He is quickly coming to love taking car rides just to get out and also online shopping with mom. 

Here he got his ball stuck and is sporting one of the PICC line covers that a dear friend made for him with another friend.

He is loving the indoor basketball set that he got as an early Christmas gift and engaging us all in games, often. 

Ollie has received so many new Lego sets and built so many recently that he has now conned Daddy into being the master builder so he can simply play with them after. 

We even found time to bake (not for ourselves as we already have so many yummy things from kind people who have brought goodies by) for the St. G youth group tomorrow night and Ollie was thrilled to help.

A normal, boring evening at home is so underrated and we are so enjoying them, but back to CHEO tomorrow for a PICC dressing change and a lesson.