Together at last...after 11 days admitted to CHEO and 6 weeks before that constantly juggling our lives around medical tests, we're so happy to just be home together.
Monday we had to go back to CHEO to have Ollie's PICC (the semi-permanent tubes inserted in his arm to give easy access to his vein for medications and blood tests) flushed and hepronized as this is needed every day. Basically it's to ensure that the PICC doesn't clot or get contaminated to avoid having to replace it, since it took a procedure in the OR under general anesthesia to put it in. Plus the PICC helps him to avoid more "pokes" with needles each time. In hospital the nurses suggested that we eventually learn how to do this to give our family greater freedom and reduce our need to go to CHEO or work around Homecare. Since Homecare hadn't been organized to come to our house for Monday (remember we got out a day earlier than planned), back we went to CHEO.
I can tell Ollie is accepting and getting used to the new normal because in the past he would have kicked up a fuss about having to go back to a place he felt was not fun. To my great surprise he just asked me to verify that we were NOT spending the night and when I confirmed this, he quickly got ready, and was delighted to realize he could take his portable Nintendo Switch with him.
Unfortunately due to some miscommunication and a really busy day, the team they paged twice to do Ollie's line never showed up, so we waited over two hours to have a very simple thing done. This was motivation for me to learn how to do this at home myself, but more on this later.
I think we were meant to be in MDU longer to get to know some other families there. There were two other families in MDU Monday that had also been admitted and were on our ward at the same time last week. Ironically when you're admitted, people keep to themselves. Aside from the odd hello in the halls, playroom or kitchenette, families don't really interact with other families. It's like while there you need to save all of your energy for your own kid and to survive it yourself and you don't have an ounce left to give to getting to know someone new. As a highly social person who loves to meet new people I found this strange, but also weirdly comforting that I could be more introverted at a time when I was processing so many life changing events at once.
So in MDU Monday, a super sweet mom we had seen on 4 North said, "Hey! You guys got out!" (like it was a jailbreak...LOL). We began chatting about our kiddos and their journeys. I hadn't realized her son is same age as Ollie, as he is developmentally delayed, so he seems younger, plus Ollie is a tall giant compared to most kids his age. Her son was very sweet and has the coolest hats with fun characters on them. Another family from 4 North seemed agitated to be there as they were late for some other event. They mainly kept to themselves despite us trying to engage them in conversation and their 2 year old daughter was as outgoing and bubbly at MDU as she was running down the halls in the ward pushing a doll stroller with glee. A third family was friendly and offered to share some snacks. Such a different atmosphere than being admitted together. You'd think that staying in hospital would be more intimate and personal since we were all sleeping, eating and going down the hall in jammies to go to the bathroom alongside each other daily, but not so.
Tuesday was our first day in 7 weeks where we did not have to go to CHEO. We played Nintendo Switch, snuggled and watched tv and opened a Christmas present at his request. Since we all need joy right now and we will likely be admitted to hospital again on Christmas Eve for 6 days to begin round 2 of chemo, we've decided he can open one whenever he wants to give him time to enjoy each one with time to play as opposed to rushing it all the day before and not getting to enjoy much.
So getting back to Homecare and his PICC line...we got a call from the homecare nurse asking if the Medical supplies had arrived (they hadn't) and promising to go out of her way to go back to the office and get some so that we wouldn't have to wait until evening to do this. Naturally 20 minutes later the supplies arrived by courier!
The nurse was a super sweet young woman and asked many questions top know more about Ollie' s condition and how we discovered it. She was super kind and listened intently, later telling me she often had elderly palliative patients who find themselves with cancer at the end of their lives and naturally they have a hard time seeing the importance of positivity at that stage. She asked if she can follow our blog, so she may be reading this now! 😀 She said if I wanted she'd have me do the line today and talk me through it.
I will preface all of the next bit by saying that I have many nurses and people who are involved in caring.for others as a career in my family. My aunt was a nurse and the first person in our family to go to college or university. She always encouraged me to take my education seriously and suggested nursing or medicine as a career, but I didn't think I had what it takes to be around people who were suffering everyday. Her daughter is also a nurse, as is my dad's cousin to whom I am close. My mom has cousin's who are nurses, too. My grandmother worked for many years in an institution for adults who had physical and mental challenges (back in the day when the philosophy was to institutionalize them and not to have them integrated into everyday life with everyone else). My mother and two other aunts work with special needs and elderly people as personal support workers part-time to this day. Needless to say I come from a long line of women who have dedicated themselves to caring for the sick and those who require extra assistance. I guess that is where my capacity to do this comes from. Maybe we have a special gene...
Anyways, the Homecare nurse walked me through everything. It helped that I had already seen this done in hospital 12 other times. Ollie hardly complained, although he did tell me I didn't do it as well as the other nurses (LOL). It was surprisingly simple and I felt more in control at being able to do this because the day before I had been stressed as we waited to see if we'd have to go to CHEO to do it and when there waited for hours to get it done. So for the rest of the week a nurse will cine and walk me through it each day and hopefully by next week I will be slow to do it myself giving us a bit more control and more flexibility while at home. My gratitude to the very positive and patient Homecare nurse who helped to make our day easier. Nurses are angels in disguise.
Yesterday Abby also had a new experience attending WE Day. WE Day is a celebration of young people and educators who are making a difference in the world. It includes famous speakers, music groups and real life local testimonials from adults and youth who are volunteering their talents to make things better. Abby like her mama and papa loves to volunteer and help and is incredibly socially conscious for one so young.
Dear friends had special VIP tickets from the sponsor and asked if she could go. Abby is a member of the Social Justice League at school and had joined this year in part hoping to go, but it turned out this was the year her school didn't go, so this was really special that she'd get to go after all.
Dear friend Francesca and Abby so excited to be at WE Day.
These girls had also spearheaded the campaign to raise funds to buy Ollie's Nintendo Switch and are always part of a very active group of friends who participate in the Lemonade Stand for Cancer, Jump Rope for Heart, Terry Fox Run and many other local initiatives. To say that I am proud of the young women they are all becoming is an understatement.
So Abby came home filled with excitement and energy raving about her day and what incredible people there are in the world. Exactly what I have been trying to show her throughout this journey we are on with her brother, so fantastic timing.
Finally, we ended our day at church where reconciliation (confession) was happening for the first time for the grade 2's preparing to do their first communion in the spring and for the seasoned grade 6's preparing for confirmation in February. It was a bit bitter sweet to be there as I have been helping our amazing youth minister to prepare these kids for their sacraments and Ollie was supposed to be doing his first reconciliation and communion this year. Nevertheless, the mini-mass was good for the soul as always and after, so many lovely members of our school and church communities came over to hug me, tell me they are praying for us and to ask how Ollie is doing. Perhaps the hardest part was the little ones coming over and asking where he was and having to remind them that he is sick, but is doing well and missing them. One of his dearest little friends came over and gave me the biggest hug and asked me to give it to Ollie and it was all I could do to hold it together for her. What special people we all have in our lives to love us so much.
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