The Journey Home – Part 3

On Saturday, November 28th, 2015 we left Ste.Justine for the last time with Kate. She had suffered a crisis, and the team had decided that any further intervention would not be helpful. The decision to undertake an experimental treatment for her graft versus host disease was now no longer necessary. Kate had made the decision for us. With the support of our Ste.Justine team, we organized ourselves to take Kate home, make her comfortable, and wait for what might come next. 

Part 3

As we walked the long passageways and corridors of Ste.Justine, toward the parking lot, we passed by so many people. I found myself wondering what they thought as we walked by. Was it pity I saw in their eyes? Concern? Shock? Understanding? I drew my attention away from them and inward, forming a bubble between us and them. I felt exposed by the intimacy of our situation, and by the decision we had just taken to take Kate home. Possibly to die. “These people should not be witness to this”, I thought to myself. “They don’t know us. They can’t imagine what we have been through”. I imagined them there with a broken arm, or recovering from a minor surgery. In those moments I was angry and jealous all at once. Their journey would be nothing like ours. I didn’t want them watching us at this most intimate and private time.

Our van ride home was something I remember vividly. Kate was most comfortable in a stretched out position. We couldn’t seem to make her car seat work, so I simply unbuckled it and tilted it on a big angle so that it was almost laying flat. I readjusted the lap belt to secure it again, but it was clearly not secured properly. I gave it a thought for a moment, and then decided to myself “Did it really matter?”. I stowed the DNR letter Dr.Duval had given us in the dash.

Kate loved her van. She loved going for drives. Over the past week in Montreal with Brian, she was less interested in her daily walks outside, so she and Brian made the trek to the parking garage and would drive around the city of Montreal. A ritual they did back at home in Ottawa. Brian would have a random errand to do, and he would take Kate with him. I could see the relief on her face and the comprehension that she was going home as we arranged her in the van and made her as comfortable as we could.

Jack sat in the back with her as he always did. Now feeling a responsibility to watch over her, and let me know how she was doing. Something that was not new to him. He was also her DVD manager, and located her Dora Christmas video for the ride home. I remember asking my 11 year old to “check and see if she was still breathing”. Even as I remember this now, the enormity of that request hits very hard. And he did it, “Yes, mom, she’s ok.” he said. “You’re ok, right Kate-O”, and then would go back to watching his movie (Dora Christmas had long been ejected and replaced).

I think we all felt a sense of release on that ride home. Brian and I talked about the fact that we wouldn’t be making this drive to Montreal ever again. It was surreal. “We went to Montreal for 9 months and all we got was this fucking t-shirt”, we joked. We wanted to hate that city, where there had been so much pain and suffering. Where our lives had been ripped apart. Even now, I can’t think of Montreal fondly, or without a sense of sadness and grief about the city and that highway. As we drove, the sky was overcast, the traffic was light, Kate slept almost the entire way home. She was so peaceful, the morphine was timed just perfectly.

Brian and I discussed whether or not we should go to Roger Neilson House and seek support there for Kate. It was an option. We would be well supported, Kate was known there, it was familiar to us, and there was an entire team ready for her. In the end we decided to head home. We had promised her home, and though we were uncertain about how it would all come together, we thought it was the best decision for Kate and our family.

As we pulled into our driveway, Kate started to stir and wake. But she was not happy. “No no, van van”, she said. She did not want her van ride to be over. She did not want to get out. I paused for a moment thinking, what could it hurt to drive a little longer, but I wanted to get her in the house and settled. I thought we could take her out for a walk and fresh air, and Dr.Splinter was on his way to our house to assess Kate. “Kate, we’re home baby, we’re home”, I signed and said to her. I thought she didn’t understand that we had made the trip to Ottawa. Perhaps she  thought we were back at Ste.Justine. She seemed to realize and settled, allowing me to pick her up and carry her inside.

We arranged Kate on the couch supported by pillows. I wasn’t sure of the most comfortable position for her. Being at home changed things for me. There is something about being out of the institutional environment of the hospital setting that is freeing to your emotions and thoughts. This was our personal space, where we felt safe and where people were our guests and not the other way around. I could relax, Brian and Jack could relax, Kate could relax. There is something that you cloak yourself with when you are in the hospital, constantly interacting with veritable strangers during the most intimate of times. You are on your guard. You need to show restraint and control under the most incredibly stressful situations. You need to control your emotions, because crying too much, or being angry and frustrated can will compromise how you are treated and how your child is treated. You need to be on your guard – ask the right questions, smile and be kind (when you want to be anything but). You are better received when you are the ‘good parent’, the ‘strong and cooperative parent’, ‘the organized parent who asks the right questions’…’the attentive to the physicians and nurses parent’. I was very good at it, and I was sooo tired of it. I wanted to let it go and be direct and honest in how I was feeling, and what I felt about what was happening to Kate. I wanted to sink into my couch and not a plastic hospital chair. It didn’t happen right away, I had worn the cloak for far too long, but being home helped considerably.

Dr. Splinter arrived soon after we got home and had Kate settled. He was there to assess the situation, assess Kate, and determine next steps. He arrived with a ton of medications, and nurse from CCAC whom I had never met before. She came unprepared with no supplies, and I honestly didn’t give her a second glance – even now, I can’t even remember her name. I didn’t like that she was there. She was a stranger at the most intimate time. I chose to ignore her and to reconsider her if and when I actually needed her help.

I am not sure what Dr.Splinter and Dr.Duval discussed before we left Montreal that morning. I know they spoke and I assumed that Dr.Duval was clear about Kate’s condition. Unfortunately what happened over the next few hours was extremely stressful and caught us all off-guard.

It quickly became clear that Kate’s oral dose of morphine was not adequate to manage her pain. She was likely not absorbing it properly due to her GVHD, and her pain was not being well managed. Kate had also been on a morphine pump for the previous 18+ hours, and I had made the assumption that a morphine infusion would be waiting for us when arrived home. It was not, and it had not been ordered. Dr.Splinter’s plan was to continue with oral morphine and ‘see how she does over the next couple of days’.

A prescription for an increased dose of morphine was quickly written, but it required one of us to run to the pharmacy to fill. I was not willing to leave Kate, so Brian set out to pick it up. The prescription was for a higher concentration of morphine not often carried by regular pharmacies. As we waited for Brian, he went to three different pharmacies before he could find one that carried the concentration of morphine Kate needed. The lovely woman at the counter asked who the drugs were for, “My daughter”, Brian replied. “Oh, has she had a dental surgery?”, the lovely naive idiotic lady asked. Making the assumption that this is what the morphine was needed for. Brian never answered her.

As we waited for Brian, we talked about Kate’s pain management. I felt she needed a morphine pump as soon as possible. Slowly increasing her oral dose of morphine was discussed, and adding a subcutaneous access for additional pain management was also decided upon. However the CCAC nurse had not brought any supplies to do a subQ, and she wouldn’t be back until later that evening. She had spent her entire visit trying to figure out how to hook up Kate’s pump to her PICC line so we could administer the IV fluids that Ste.Justine had sent home. I finally took the pump from her and did it myself already very familiar with it. With no supplies and nothing to contribute, she left and said she would return when the morphine pump arrived.

I can remember feeling confused, unsure about how hard to push for the pain management I knew Kate needed. I remember Ste.Justine’s promise to us that they would never allow Kate to be in pain and suffer, and they had been prompt with any requests we made for pain management. This situation wasn’t new to me. I was unsure about the increased oral dose of morphine. I wasn’t loud enough with my concerns. It was a lesson I should have already learned. Dr. Splinter did agree to order the morphine pump and sent the requisition off to CCAC that afternoon.

The next few hours were a blur of administering medications and managing Kate. Kate spent the afternoon on the couch in the living room. Sometimes awake, but uncomfortable and other times sleeping. Brian had arrived home with the morphine only to leave again. He wanted to get Kate a Christmas tree, and because she was not allowed a real one (due to infection control and possible mold from a real tree), he was off to Canadian Tire for a fake one. My parents arrived to see Kate. Sunita left with a promise to return. I thought I would take Kate outside, but only managed to get her boots on before realizing it wasn’t going to be possible. Kate refused to let me take her boots off though, so she had them on as she dozed in and out of consciousness on the couch that afternoon.

Sunita returned and we thought that Kate might want a visit from her daughter Anika, one her best friends. Kate was somewhat awake and when we asked her about Ani visiting she said “Yes”, and signed “Ani”. By the time Sunita returned around 5 p.m. with Ani, Kate was asleep again and couldn’t be woken. Her Christmas tree had also arrived and was hurriedly put together and the lights turned on. The room was overwhelmingly full of people Brian, Jack, my parents, Sunita and her kids, Dr.Major who had stopped in, and Stephanie who was helping me care for Kate. Kate looked at the tree briefly, but the reaction was not what we had hoped. Kate was working on just coping with her pain. I felt like I was playing hostess. It was too much.

The house became quiet again, and I was alone with Kate and my friend Stephanie. Brian and Jack were out. Dr. Splinter had left with instructions to call him if needed. He would be an incredible support to us over the next couple of days. As the evening passed, Stephanie and I administered medications to Kate and quickly became overwhelmed with her pain management needs. The morphine was not working. I made phone calls to Dr.Splinter who adjusted Kate’s morphine dose up even further. I called CCAC to inquire about when the morphine pump would arrive as it had been ordered that afternoon by Dr.Splinter. I was told that the order had simply been placed in a “To Do” pile, and that it had not been marked as urgent. It was the weekend, nothing was going to move quickly at CCAC. I was told the pump should arrive around 11 p.m. (give or take). I looked at my watch, it was 6 p.m.  I was incredulous, and tried to remain composed with the woman on the phone. “My 8 year old daughter is dying. She is in incredible pain. We have been waiting for this pump all afternoon. We need it now”. I did my best to be calm and direct, and not to scream in frustration at this impassive person on the phone, but I cried and my tears of grief and frustration fell. “Please”, I said. “She’s just a little girl”. Gratefully the woman from CCAC finally got it. “I can have it there for 8:30 p.m.”, she told me.

There are many things that haunt me about the last few months of Kate’s life. That afternoon is one of them. Watching her suffer and feeling like I did not do enough.

Over the next 2.5 hours, Stephanie and I nursed Kate. Steph became a pharmacist and nurse drawing up meds like nobody’s business, and recording what we had given and when as we adjusted morphine doses, our own version of a MAR (medication administration report). Kate stirred and showed obvious signs of discomfort, but she did not wake. Dr.Chakraborty visited, and I could tell he was disturbed and so incredibly saddened by the state Kate was in. I didn’t have much to say to him. I tried to be comforting and reassuring. I’m not sure why I felt responsible to do that, I just did. Dr. Chakraborty was Kate’s metabolic/genetics doctor. He was our closest advisor about undertaking the bone marrow transplant. I knew this is not what he wanted for her – he said as much.

At 8:30 p.m. the morphine pump arrives and the CCAC nurse (Sarah?) along with it. This is a pump she knows how to operate and she quickly gets it hooked up to Kate’s PICC. She also asks me to put some Emla (skin numbing cream) on Kate’s tiny tricep area so that she can install a subQ access. This, I am told, will be needed for further medication as “things progress”. I am so focussed on the morphine and making Kate comfortable I ignore the whole idea of a subQ port and stored that in the back of my mind. I warm up a bit to Sarah, and she goes off to check our hastily written MAR and organize further subQ medications that might be necessary overnight. She left a couple of hours later. I don’t remember speaking to her.

Around 9 p.m., Kate seems more settled and Stephanie and I decide to move her to her bedroom. We carefully lift Kate together and carry her upstairs, Brian followed us with her IV pole. We gave her a little sponge bath, and change her into her pyjamas.

I can’t remember much about that evening. I planned to sleep with Kate in her bed, Brian had gone to Sunita’s to pick up a small futon mattress. He and Jack are going to sleep on the floor in her tiny room. Somehow we made it work.

There is some sleep, not enough and not comfortable, but Kate is home and she is comfortable.

Running For A Reason #fightlikeagirl

A few weeks ago I was asked to interview for a local newspaper. The piece was focussed around International Women’s Day #IWD2016. It was an honour to be asked. It was a difficult interview to do. The author was limited to a 650+ word count and I wasn’t sure how she would tell ‘my story’ in that space. I think Bhavana (Gopinath) did a good job of condensing our 2 hour conversation. She describes me as a mother, advocate, and athlete. I think those three nouns describe me well. Here is what I might add to the article:

Julie is in an incredible amount of pain and lives most days moment to moment. She can’t seem to process the tragic loss of Kate. She feels the shadow of her little girl with her at every turn. Every morning she opens Kate’s bedroom door and says ‘hello’. Every night she closes it again and blows her a kiss  ‘goodnight’. Kate is there when Julie sleeps, and she is the first thing she thinks of when she wakes.

Julie finds peace and empowerment in supporting other parents to navigate and survive the complexity and frustration of a medical system, and community care that are not structured to support medically complex and fragile children like Kate. She wants to be a voice for change, and as she gets stronger she will continue to seek out the right opportunities to do that. Opportunities that are real, and where people within the system are dedicated to real change. 

Julie doesn’t want Kate’s death to be simply accepted. She would like to see learning happen, and the opportunity for growth of knowledge and skill in assessing, managing, and treating medically complex children.  She knows Kate’s death comes with a heavy lesson, and that one day there will be a better treatment for SIFD and mitochondrial disease, possibly even a cure. 

Julie runs because that is where she feels strong – and where she also feels pain. Her sweat conceals her tears. The burning in her lungs and in her legs reminds her of what Kate had to endure and her strength. She listens to music that inspired her all along Kate’s journey. Her running partners remind her of the people who have rallied around her family, and that she is not alone. Running in solitude gives her peace and the opportunity to live a few of the lessons Kate taught her – strength, endurance, living her best life.

 

On May 28th, 6 weeks after I run the 120th edition of the Boston Marathon , I will run the 42.2 kilometres of the Ottawa Marathon as part of Team MitoCanada.

This is one of my steps in building Kate’s legacy.

Team MitoCanada Ottawa will run in honour of Kate this year. Our trademark “Team MITO” shirts will be pink, Kate’s favourite colour. Over 100+ runners will participate in the 2k, 5k, 10k, half-marathon and marathon events to raise awareness and money for mitochondrial disease. All money raised at #runOttawa2016 will be presented on behalf of MitoCanada to the Children’s Hospital of Eastern Ontario (CHEO) Research Institute as they pursue research into SIFD and mitochondrial disease.

If you would like to participate as a runner, and help us fundraise toward our goal of $42,200, we would love to have you.

To donate to Team MitoCanada Ottawa Race Weekend, please visit my #runOttawa2016 fundraising page.

#fightlikeagirl

 

Running around the 5k race course at Ottawa Race weekend 2014.

Running around the 5k race course at Ottawa Race weekend 2014.

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Team Drury – Team MitoCanada Ottawa Race Weekend 2014

 

Julie

2016

Today is one of the hardest days since November 30th. On the precipice of 2016 and realizing Kate won’t be part of this coming year.

A good friend asked me if I would continue this blog. I imagine I will, but I am uncertain what it will look like and what I will write about. 2016 will be a year of change and finding a new balance in my life.

The past month has been full of sadness, pain, longing, regret, reflection, solitude, exhaustion…I think of Kate every moment of every day. I can feel her with me in everything that I do. Just as she and I lived our lives the past 8 years.

I am grateful for Jack. He is my anchor in all of the chaos of emotions right now. He needs his mom. That is a good thing for me. Yet another role for him that is too demanding – but he is wise beyond his years and he knows when I am sad and sidles up for a hug or to hold me (role reversal). Over the past 8 years, he has done so much, learned so much, and given up so much. And here he is – my little man – giving so much more of himself again while coping with the loss of his sister. Proud is not enough to describe how I feel about him. Awe maybe.

I am grateful to Brian. Stoic and kind. He gave me the gift of time with Kate after she passed. Respectfully allowing me alone to hold her and cuddle her and be with her over that night and into the next morning. He has let me grieve as I need to. Not questioning, not judging, nor hurrying me along.

Many of you wonder ‘how I am doing’. I am not doing well, but I am doing my best. I am moment to moment in my days. I don’t feel the need to explain why I can’t smile, or can’t find the energy to talk some days. I am grateful for the words of support from all of you. I am ok with this place of solitude combined with selfishness. I am doing what I need, when I need it. Nothing more. I am grateful to those who are holding vigil for me – who won’t let me be alone for too long.

The days are quiet and long. Kate took up so much physical, emotional, and intellectual presence every day. I hadn’t realized how much. I knew I was exhausted, but coming off of the constant lack of sleep, extreme vigilance, and adrenaline of caring for Kate has been physically and emotionally challenging.

Brian and I have a lot more time that we have ever had before. We’ve literally sat in the living room and stared at each other. We aren’t sure what words we should speak. What happened? Who are you? What do we do now? Someone should get up and do something, draw up a med, clean up vomit, change a diaper, do laundry, call/email a doctor…chase after Kate. I wonder how our relationship will be redefined over the coming months and years.

It feels like we are both waiting for her to come back – that we are simply having a little reprieve from the busy-ness of caring for Kate, like one of her Rogers House visit. We are are both waiting for her and to step into our caregiving roles again. We would both pick up that role again in heartbeat to be with her.  Then, like a heavy weight, the realization comes that she is not coming back. And the sadness hits again.

We have slowly emptied our house of medical supplies, medications and equipment. We’ve made gifts of treasured things to a few of her friends. Some things we still hold onto. Her room remains the same. Her favourite books, her puzzles, her Curious George stuffies and dolls, her clothes and sparkly shoes. I think that space will remain untouched for some time to come. It is a room I like to visit often – and sometimes I open the door in the morning just to say hello to Kate. I can see her there in her bed, hair tousled, face puffy from sleep, signing ‘Good Morning’. I can feel her presence in that room, and her ‘smell’ in her dresser drawers – and that is a good thing.

 

There are no words for the loss of a child. I’ve heard that said before by others. It is true. I was bold and confident in my belief that this would never happen to Kate. I believed in my heart that she would get through this. I believed she was different, that her strength and courage would pull her through. I believed if I was strong enough, determined enough and vigilant enough – I could pull her through. I was not naive in knowing this would be a very difficult thing for her, but I was shocked at her death. When she came home Saturday, November 28th, no one expected she would be dead 48 hours later. Not our strong and stoic Kate. I struggle with the worry that maybe more could have been done, and then remember the gift of getting her home, the shock of realizing she was dying, and supporting her in the last couple of days of her life.

Her death is a tragedy. It was not expected and it was not supposed to happen. I am still searching for the answers as to why.

She and I were a team. The last 8 years were an incredible roller coaster of love and determination. As much as I was her champion and supported her, she defined me, strengthened me, and helped me become the best version of myself. How do you lose and move on from a force like that in your life?

This is what 2016 will be for me. Learning how to move on, and if I can’t learn – then simply learning how to cope.

 

She was an incredible child. My own daughter.

8 years was not enough time with her. That is my biggest regret.

 

Julie

 

I invite you to watch Kate’s Celebration of Life Memorial from November 30th, 2015. 

 

“How To Be A Good Guest”

NOTE: We have been home for just over 2 weeks from a close to 7 month hospitalization. This blog post has been sitting in my ‘draft’ since late August. It’s interesting now to read it and reflect on our experience of such a short time ago. I want to say that our family is very grateful to the excellent medical professionals who have taken care of Kate. This is unedited and unrevised. A raw reflection of hospital living.

 

Living in the hospital with your sick child is not something I would wish on my worst enemy.  It is a sad and lonely existence.  It is stressful, exhausting and scary.

You lose all control over your life in hospital: personal space, likes/dislikes, routine, and decision making. You are reminded almost daily that you are not in control, that your autonomy as a parent is no longer. That discussions and decisions about your child, you, and your family will often happen without your presence or input.

And you have no choice. Your child is sick. You need to live this life, sleeping on a small cot, being woken throughout the night because of alarms or lights, physically and emotionally exhausted, separated from home – family and friends, eating what and when you can, limited from going outside or fresh air, living with incredible stress among strangers, all while dealing with incredible stress and heartache.

And you always need to remember to be a gracious guest. Smile. Say Thank You (a lot). Guard your emotions. Accommodate any interruptions of medical staff to your room. Repeat your child’s story endlessly and readily. Expect to meet an endless stream of medical personnel. Try to greet everyone by their title – despite the fact that for months on end they will simply call you ‘mom’. Expect no routine. Be agreeable with waiting all day for 5 minutes with a doctor. And be vigilant about keeping you child safe.

 

Be. A. Gracious. Guest. 

 

Check your emotions at the door – AT ALL TIMES. An almost impossible task given the circumstances you are living, but a clear expectation by those whose ‘house’ you are visiting.

If you are lucky, you’ll work with a medical team who are compassionate, patient, communicative, flexible and transparent. Doctors and nurses who understand your journey and the stress that comes along with it. Professionals who aren’t jaded by working with endless little patients and endless upset and frustrated parents.

Let me warn you. This type of environment and medical team cannot be an expectationWe have been lucky for the most part.

Hospital life is a constant delicate balance about living out a working relationship that includes respect and civility, but in an environment that is created and controlled solely by the medical professionals, and for the parent, under situations of extreme personal stress.

 

House Guest Rules:

  1.  Be Clear About How Long You Will Stay

I don’t want to be here. I would prefer not to be ‘visiting’. I’m sorry, but we have no idea how long we will be staying. I am not in control.

2. No Surprises Please

After living 8 years with a child who suffers from an ultra-rare disease, ‘no surprises’ has definitely been taken off the table. We will surprise you daily. 

3. Choose The Perfect Gift

I will bring you coffee, tea, Timbits, a fruit basket, cookies for the night shift. We are grateful for all that you do for us.

4. House Rules Rules

We will do our best to adjust to your ‘rules’, but we would appreciate some flexibility and compassion about the fact that we are reluctant guests and that some ‘rules’  are not to the benefit of our child. But again, I understand…I am not in control

5. Be Appropriate

I assure you, I am a calm, rationale and appropriate human being 99.9% of the time. I hope you understand that this is an incredibly challenging and difficult time for our family, and I am doing my best to be appropriate. If I am not at all times, I hope you are empathetic and able to be there to support me.

6. Help Out

I will do everything I can to help out. Changing beds, managing my child, helping with meds, holding her down for procedures, interpreting for you and for her etc.

7. Entertain Yourself

Done. An endless supply of stickers, play dough, colouring, puzzles, dolls, toys, crafts to play with. I’ve updated my Netflix subscription as well, and found a few magazines and books to flip through.

8. BYO

If only! An occasional glass of shiraz in a beautiful wine glass shared with a good friend would be so amazing right now.

9. Leave No Trace

Keep our room neat and tidy. Check. We’ll likely leave a trace with you though. Kate is just too adorable to forget. 

10. Give Thanks

We are both grateful and we say thank you every single day.

 

As a patient-mom, I have lived more than my fair share of out-patient, in-patient, short and long term hospitalizations. I understand the medical system and I know how to navigate it – most of the time (it can be difficult and confusing still).

I am a good person, a good mom, and excellent patient advocate. My goal is to keep my daughter safe and well cared for, and I have clear expectations about how that is to be done. It doesn’t always fit with the ‘house rules’ of the medical professional I am working with. So I go back to my “etiquette” and do my best to get done what needs to be done in a collaborative and professional manner. Often times I am relied upon by these same professionals to help them understand my daughter better because of the complexity of her condition. But I am a mom. And I get tired and emotional and scared – and I am not always going to have the patience to say everything in my nice voice. I am not always the perfect “guest”, but I think I come pretty darn close. It comes with working within the imperfect environment of a hospital, and I think needs to be appreciated and understood by everyone involved in the care of a sick child.

 

Julie

 

 

 

 

The Best Of….

In an effort to take this prolonged hospitalization day by day and moment by moment, I am working on reminding myself of the positives and good moments. Don’t get me wrong, the negatives and the dark times are not few and far between here, but for mental health purposes and trying to ‘live for the moment’ (ugh), here are the Ste.Justine, Block 12, highlights:

 

10. We have a big room. 

Totally important when you are living within four wall, in isolation, for a prolonged period of time and you have a child with special needs to keep happy and engaged. We have a room where the parent bed is ‘built in’, a move up from our fold out cot and DEFINITELY better than the chair beds we’ve experienced in the past. Kate has space to move around and play and be active. She has a large bathroom, with an appropriate tub and shower and enough room to fit two adults needed to help her shower, and her enormous IV pole. And windows. Big bright windows that she can look out (though the view is never guaranteed).

9. We are learning/improving our French.

Well, I was actually already bilingual. Level E (exempt from requiring further testing) as assessed by our federal government who are very keen to spend a LOT of $$ on making sure everyone in the Public Service is fluently bilingual and limiting the careers of those who are not. Wait…that’s another rant for another blog/site…sorry.
Ok, back to French Immersion Camp Ste.Justine. When we first arrived, I have to admit I was intimidated to use my french language skills. They were ‘rusty’ and I didn’t feel I could express myself the way I needed to, missing key medical vocabulary to communicate with the nurses and medical staff. The medical team was more than willing to work at functioning in English, but I soon realized that the nurses were more comfortable in French and I was going to get a lot more from them if I asked them to speak French to me. The information coming from them was more important than me worrying about my masculine/feminin pronouns etc.
I think I’ve gotten to a point where my French is now pretty seamless. A few members of the medical team have even complimented me on my French (merci!). There is really no ‘downtime’ from French here as most of the families and patients are French as well. If you want to talk to anyone and not go crazy from isolation – you need to parlez le francais. I’ve even participated as a ‘translator’ between French and English families in the parent kitchen as we all talked about our kids.
Kate has even started to pick up some French and is saying “merci” to her nurses and doctors. Yes, the developmentally challenged, Deaf child, is now trilingual. Ha.

8. The nurses here are amazing. 

They know bone marrow transplant, and they know post bone marrow transplant care and complications. They are helpful, insightful, willing to listen, willing to support, and they are above all sympathetic. I know that they know BMT well. They understand TPN and use it frequently. They know the complicated medications these kids are on and they know that when a parent is worried, there is a very good reason for that worry. They are intimate members of Kate’s care team and are briefed extensively on her history, complexity and the trajectory  of her BMT recovery to date. They often refer to her as “plein de surprises” (full of surprises) and because they are using the same language – I know it is a context about Kate that the BMT team is emphasizing so that they take nothing for granted with Kate and recognize that she is different and doesn’t follow the ‘typical’ clinical presentation.
It makes me feel safe. It makes me feel confident. It allows me to trust and to actually feel like I can close my eyes at night.

And that is huge.

The BMT team here at Ste.Justine has taken great care in caring for Kate. When nursing rotations are organized, they work hard to keep Kate with the same nurses to allow for consistency for Kate and facilitate communication. Kate has unique challenges with language, using a mix of ASL and spoken english to communicate, but the more you know her, the more you understand her. Ste.Justine has made that a priority in her care.

Again. I am grateful for that attention to detail to better support my child.

7. Patience.

Kate’s BMT team are a core of 4 physicians. We work most closely with two of them, Dr.B and Dr.D. This is actually how Kate refers to them because she can’t pronounce their full surnames. Dr.B she’s even reduced to simply calling “B”. (Yes, it’s adorable and he loves it).

They are wonderful with Kate. Patient, engaging, cautious, willing to learn and follow her lead. They don’t rush her with examinations, but flex to what she is willing to do. Nothing is forced, and they are deferential to her whenever possible.

Maybe it’s more than patience. It’s Respect.

It warms my heart to see them attempt ASL with Kate. Everyone is signing “see you later alligator” with Kate. It’s the common goodbye as they leave her room. Dr.D (with a smile on his face) even mentioned that he signed it to a colleague (who also knew Kate) at a recent medical conference here in Montreal.

It’s the small things, but it’s doctors who I can see are invested in my daughter. Who want the best for her and will be at her bedside at a moments notice to help her.

6. FaceTime

Technology has been a huge crutch for us here. iPad games are endless, and watching YouTube videos of Dora, The Voice, Curious George, ASL songs etc. are heavily relied upon by anyone who is taking care of Kate.

What has been very significant for Kate is being able to stay in touch with family and friends over FaceTime. She can say good-night to her dad and brother, catch up with her aunts, uncles and cousins from Newfoundland, Halifax, Saskatchewan and Ontario. She can dance the can-can with anyone who will take on the challenge, sing Happy Birthday endlessly with anyone willing, do the hokey-pokey with her buddy “big Jimmy”, or sneak some FaceTime with friends who rent out boardrooms at work for that specific purpose.

One of my favourite FaceTime moments is when she gets to chat with her friends at Rogers House. Rogers House has been a special place for Kate and a huge support to our family. The kids in respite there are Kate’s friends and the nurses, social workers, play therapist and doctors are more than professionals working to support her – they are genuine in their enthusiasm and excitement when they get to chat with Kate.

5. Netflix

Despite loving books and being a voracious reader….OMG….whoever invented Netflix…thank you! I have consumed more shows than I care to name and average 2-3 movies a week. It’s what you do when you are in an isolation room and can’t leave your child who goes to bed at 7 p.m.

It’s also what you do when you have energy for nothing else.

4. The other families here

When we first arrived here much of our stress was quite elevated. Everything was so new and felt so complicated, not to mention the many unknowns of our child going through a bone marrow transplant.

The third floor of the hematology oncology wing of the hospital is kept for a very specific group of families. There are a maximum of 6 families at a time and most times there are only 3-4 of us. We eat, sleep, ‘lounge’, and do everything else in close quarters with one another, and so we talk.

We share stories about our kids…”what does your kid have”
We share what we have learned, how to understand tests, bloodwork, complications and what questions to ask the doctors and nurses.
We share our worries and concerns.

We come from varied backgrounds and speak many different languages. Being with these families is one of the few times where I felt truly understand and where the rarity of Kate’s disease did not stand out.

3. Kate’s BMT was successful

Despite the many complications we have had post BMT, for all intents and purposes Kate’s BMT is a success so far. Her blood counts are stable and almost normal. Her lymphocytes are recovering. Her chimerism tests are solid. She has not rejected the new marrow. And she is still here.

2. Our evening walks

Several weeks ago, after we had arrived back to Ste.Justine having been transferred from CHEO, Kate was still in isolation in her room and only allowed to take brief walks on the third floor. Kate was still very unwell with lots of ups and downs and I was worried about her ability to cope and keep up her incredible stamina long term. I insisted that Kate be allowed outside for daily walks. Her team agreed and were willing to make this happen – not an easy thing to do because it means disconnecting her from her TPN feeds, IV hydration, IV medication etc. and flushing/heparinizing her lines and installing all new lines when we returned. But it is 2 hours of incredible freedom for Kate. And it is beautiful.

The first time we went for one of these walks, Kate hugged a tree. She climb onto someone’s lawn, sat for a moment and looked at the surrounding garden, then got up and walked over to a lone ornamental tree and hugged it.

Sometimes your instincts as a mom are bang-on.

Now our walk is a ritual. Sometimes an opportunity for Kate to have a  much needed nap, other times she simply watches the people and cars while humming a little tune to herself.  We’ve passed by quiet playgrounds and took a chance to swing or go down a slide, and we walk through lovely parks enjoying the shade and the view.

Huge. Huge for this little girl who hasn’t had the chance at a any of this for 4 long months.

1. Happy Incredible Amazing Kate

And then there is Kate.

What can I say? She is Incredible.

I work hard at keeping up beat, but my energy is waning and I want to go home. I am positive and I am hopeful, but I don’t feel much like laughing or talking or being silly most days.

But Kate does. So I do it for her.

She loves everyone she meets and wants to be their friend. She develops relationships and bonds with her nurses and doctors on her own – with little guidance from us. She patrols the elevator and has made the short hallways of the third floor her play space. Her eyes shine bright with love and trust and a willingness to endure.

Though I know she longs for it as much as I do, with tears in her eyes she has only asked for home twice.

She is Incredible.

 

 

Julie