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I haven’t written a post specific to Kate in quite some time. I think the last one was when we had it hit day 110 and had already experienced many serious complications post bone marrow transplant. As I reflect back on that post, I can feel the raw emotion of those days. The exhaustion, fear, and anxiety. The crushing guilt of having made the wrong choice for Kate. Not knowing what the next week, or month, or her future would hold. Not knowing if she would survive, or come out of this entire mess intact.

And here we are, 7 months post bone marrow transplant, 219 days. I’m not sure much has changed. Except…

Kate is home.

She is not well, in fact she is still very sick. I think many people understand that when you are home from hospital you must be ‘well’ and ‘recovered’. Kate is neither. She is home because we fought hard to get her here. We saw her wasting away in a hospital bed day after day, and we saw no significant changes in her care or treatment, only unending complications. Any child in that environment would not thrive or survive. We could see the ‘shift’ happening in Kate – quieter, less enthusiastic, disinterest in getting out of bed, sadness and tears when her dad or brother visited and then left for home again. She had become accustomed to her little world of four walls and seemed resigned if not accepting that this was her world. She still had her smile and he chuckles, but a shift had happened.

 

The Shift

We received very difficult news about Kate in late August. Terrifying news. And we made a decision at that time that Kate would come home. As a child who required total parental nutrition (TPN), this was complicated. One of us had to be trained to manage her PICC (peripherally inserted central catheter), and the obvious choice was me because I was in Montreal with Kate, and most at ease with her medical equipment. Getting trained was another matter – we had been asking about ‘home TPN’ since July. We had been told that ‘yes, this was possible’, however, jurisdictional issues came into play as Kate was an Ontario patient in a Quebec hospital. It was not clear who would deliver the training I required and how they would address the issue of different equipment and set up. So we were delayed – again and again. Eventually it was our bone marrow transplant team at Ste.Justine who stepped up and provided ad hoc training during breaks in our daily hospital life. The home care team in charge of TPN training at Ste.Justine refused to assist us, or train me because of the jurisdictional issues, and Ontario would not let Kate come home unless I was trained. Our home hospital in Ontario does not do TPN training and we were given the option of transferring Kate to Sick Kids (who co-ordinate all TPN for children in Ontario) where we would have 2 weeks of intensive TPN training. I obviously said no to this as transferring Kate to another hospital was clearly not a safe option.
So, bedside training it was…sneaking away to a room to learn about pumps…reviewing heparinizing her PICC…antiseptic protocols…accessing the TPN to add some specific vitamins for Kate etc. It was a crash course and it was perfect (Thank you Karine and Martine!).

With TPN training ‘done’, now we had to sort out all of Kate’s complications, determine which medical team and specialist was the lead for what, outline an emergency care plan, outline a general care coordination plan, and have a comprehensive discharge planning meeting to discuss concerns or questions. Brian and I split that discharge planning meeting between us. He was in Montreal with our team of doctors and specialist there, while I attended the meeting in Ottawa with our team there. It was a typical multi-D (multi-disciplinary meeting) about Kate that we have done many may  times before, with about 20 people in attendance. After that meeting, a plan was beginning to come together.

 

Coming Home Would Be Complicated…

Kate’s bone marrow transplant was supposed to require 6-8 weeks in hospital. This would be followed by  a 6 month recovery in protective isolation at home, while her immune suppressive drugs were slowly weaned as her new immune system started to take form and recover. She had a perfect sibling match and was therefore at very low risk for unforeseen complications. She would be back to her life better and ‘healthier’ in 8 months to a year.

This was not the case for Kate.

Kate developed a serious condition post-bone marrow transplant called GVHD – graft versus host disease. Her GVHD recurred 5 times between April and August, and became dependant on steroids. This means even with careful reduction of her steroids, at a certain threshold of dosing – the GVHD would flare again. We also tried several types of immune suppressive drugs over the summer – hoping that we might find one that would be better at controlling the GVHD. Eventually, in August, the team at Ste.Justine took a very aggressive approach to the GVHD that was attacking and destroying Kate’s gastrointestinal system. By this time, Kate had not eaten orally with any kind of regularity, since mid-March. We had attempted several times to kick start her intestines with ‘trophic’ feeding through her NG tube of supplemental nutrition, and we would get to a certain point only to slip back into diarrhoea, nausea and vomiting. The symptoms of GVHD. We had at least 3 different discharge dates over the summer, that we would reach within days, only to slip back into the GVHD cycle. Then throw in a couple of courses of antibiotics for suspected infections, and a true blood borne infection that ‘stuck’ itself to her PICC line – requiring intensive antibiotics and the removal of her life sustaining PICC for 10 hours.

We were stuck and we felt like we would never get Kate well enough to leave the hospital.

Physically we could see Kate deteriorating further because of the prolonged time confined to a hospital room where she spent most of her day in bed. Kate wasn’t allowed to play in the hallways with the other kids, or go to the playroom, because of protective isolation – keeping her safe from others because of her immune suppressed state. She was allowed to roam the hallway on the third floor transplant unit – alone, but she tired of that trip pretty quickly.
Kate had also developed a tremor which we believed was from her medication. The tremor affects everything Kate tries to do independently – drink, dress, walk, play. The only time she gets a reprieve from it is when she is asleep and her body finally relaxes and does not shake. Muscle biopsies and scans did not show a specific cause for the tremor, but did now significant atrophy of her muscles and poor mitochondrial functioning (poor energy supply to her muscles). Combined with her significant weight gain from steroids, Kate was walking less and less.

In August, when we received very difficult news. I was home for a short weekend with Jack, maybe my fourth of the summer. Brief breaks where I could sleep in my own bed, change out my clothes from Montreal, enjoy the quiet of my home, and spend some time with Jack.
On that weekend, I received a call Friday morning from Brian and Kate’s doctors. I was asked to come back as soon as possible. I took Jack with me.

Kate had developed a very serious and unforeseen condition. We left our children with the nurses, and went to a meeting room with her lead BMT doctor and Kate’s nurse. We were given the details about what they had found after some diagnostic testing. We were told the condition Kate had developed was serious, and that given what they knew about her disease, she would likely die from it. We tried to be smart, to ask questions, to try and find the loop-hole or the error they had made in coming to this conclusion. Our doctor has kind eyes, and they are always full of hope. When I looked at him that day, I saw sadness – profound sadness for us and for Kate. In that moment I felt bad for him – that he had to take on this task. I asked him how many times did he have this conversation with parents?

He said, “too many times”.
I asked what we should do? What do we tell Kate? Jack?
“Kate is already showing you what you need to do” – he said. “You just need to follow her lead, she is going to show you the way”. “Just love her and follow her lead.”

Such powerful words. And true words.

And that was when we told the team we were taking Kate home. And they agreed.

 

And Now…

Obviously the epilogue to that moment is that Kate is doing much better. The condition she had developed stabilized to everyone’s surprise. It has not been ‘fixed’, but she is living with it and it is monitored regularly. We spent that weekend with our kids, loving them and playing with them. Taking them on picnics and taking pictures. We laughed and in the next moment we cried. Our hearts ached constantly, and we felt sick with fear – but we were focussed on ‘following Kate’s lead’ and she is a joyful and happy child, even when she is struggling.

On September 17th, we packed our van and left Kate’s room at Ste.Justine. I had joked with our nurses that when it was finally our turn to leave the hospital – as we had seen so many others do before us – I wanted a parade and balloons. Our entire team made that happen for us – cheering Kate on as she left room 2-12-23 for what we hope is the last time. (Since Kate has been gone, 4 weeks later, they still refer to room 23 as “Kate’s room” had haven’t had another patient in there yet.)

Home has been amazing – and exhausting. It has taken a lot of time and way too much energy to settle in. Issues with our TPN pumps, trying to set up a workable schedule with home care nurses and personal support workers, fighting to get Kate the rehabilitative therapy that she needs in place, trying to get back into a routine as a family after having lived apart for 7 months, and incorporating all of my new nursing skills and duties have been some of challenges we’ve had to meet.

I can honestly say that now, at week 4, despite being tired, we are finally feeling settled. Kate is doing well. She is happy and wakes every morning with a smile. She loves being home with her brother and we have seen a big change in Jack. He has carried an incredible weight for an 11 year old boy – not to mention the fact that he feels responsible for Kate has her bone marrow donor. I am happy to see them together again.
Brian and I are doing our best to keep medications organized and on time, prepare food for Kate (yes, she is eating again…slowly) according to antiseptic prep protocols, and keep our home sanitized and a clean environment for Kate. There is endless laundry, cleaning, and still sleepless nights from getting up with Kate every 2 hours – but we go for walks, we sit down to dinner as a family, Kate is living with us in her home and she is still here.

 

The moment I heard the news about Kate’s post-BMT complication in August.  I was in my car. Brian had asked me to pull over and he and the doctor talked to me together. On the phone I was calm, rationale, trying to pull the pieces together and find the way to push through. It is my natural state – find a way through for Kate. But when I hung up the phone and the news really hit me, I looked up. I looked up and I said, “I’m sorry!”.

“I’m sorry. I made the wrong choice. Please – PLEASE – don’t take her.”

“I’m sorry.”

I still feel that way. I may always feel that way. I am not sure we made the best decision for Kate. We have dug her into a incredible hole. But she is incredible and she may just have enough JOY and strength to climb out. She is that incredible.

Maybe in a year I will feel differently. Or feel profound relief and gratitude that she was not taken from me. That I got to keep her.

We are happy to be home. Joyful to be home.

 

Julie

 

A Few Thoughts About Patience

I am tired of being told to be patient.

I’m pretty sure if I hear the word one more time, being directed at me in a syrupy semi-supportive/patronizing tone with a hint of caution from a person who knows little/nothing about me/Kate/or our story, I might just lose it on the next person I hear it from.

It’s been 5 months, and no one can seem to figure out how to get this GVHD under control. We’ve dealt with an 8 week BMT, a very poorly orchestrated discharge post-BMT, missed diagnosis, extremely stressful medical situations where we went unheard, mistakes were made, and Kate suffered as a result, and now the yo-yo back and forth two steps forward 5 steps back (and three steps sideways) of trying to control for a complication that wasn’t supposed to happen with no end in sight and a changing roster of people in charge of finding the solution to fixing it.

I am tired of being told to be patient. 

I do not feel patient and yet I wake every morning and focus on what needs to get done that day. What do we need to do to get Kate one step closer to home. What craft game story video iPad game sticker activity can we do that day together where I will need to dig deep to be engaged and patient within the four walls of our isolation room. What questions should I be asking? What plan can we make to get Kate better?

I am patient. I have been patient. I am patient because I have no other choice. And neither does Kate.

 

Being told to be patient and that ‘these things can take time’ is like telling a marathon runner that you have moved the finish line. Actually, not moved it, but hidden it and there is no MapQuest, or GPS, or map or even a damn sextant to find the finish line. (You even begin to wonder if the damn finish line even exists). Just keep running until you find it. Oh…and be patient. And that exhaustion and despair and frustration you feel? Just be patient. We have been so close to that finish line too many times.

Who ever coined the phrase ‘good things come to those who wait’ should be taken to an isolation room with an unwell child and locked in…and told to be patient.

pa·tience
/ˈpāSHəns/
noun
1.  the capacity to accept or tolerate delay, trouble, or suffering without getting angry or upset.

 

As of today , it has been 5 months. Kate is up and down. Feeling well for a few days and a glimmer of hope starts to grow that maybe, just maybe our patience has finally borne some fruit – only to be dashed again by the latest set back of loose/liquid green stool, nausea and fatigue. (You know that marathon finish line I mentioned? Think about having it in your sights…finally…only to have someone steal it away and move it again.)

We’ve been patient through the post-BMT phase with trialing 4 different immune suppressive drugs. Five attempts at steroid wean. Endless imaging and tests. Different doctors with different plans. Different nurses with different approaches. And not much has changed.

Kate has been patient.

Everyday is a test of patience amidst our exhaustion and fear and stress and hope for a good outcome.

Patience is wearing thin for both of us.

 

Julie

 

What Is Isolation All About?

As we go through the bone marrow transplant journey and are into the post 100+ days period (we are at Day 126), family and friends are wondering why they still cannot visit or come to our home for playdates when Kate does get home. I thought an explanation here might help:

To prepare Kate’s body for a bone marrow transplant, she was required to undergo ~9 days of intensive preparatory chemotherapy and immune suppression. From the moment we walked into her room on the 3rd floor of Ste.Justine’s hematology oncology building, we were masked, gowned, and became obsessive hand washers. Anything that came into Kate’s room had to be sanitized – toys, clothes, bedding from home, iPads, cell phones etc. ‘Visitors’ were limited to a finite list of 7 people that were very well briefed on protective isolation protocol. We ensured that list was comprised of people who could commit to helping us care for Kate while she was undergoing her bone marrow transplant, and we negotiated for her brother to be added as a #8 to that list. (He was amazing with adhering to the protocols – very conscientious).

We were required to maintain this ‘protocol’ from the moment Kate started her preparatory regimen until her neutrophils were back above 0.5

Neutrophil granulocytes (also known as neutrophils) are the most abundant (40% to 75%) type of white blood cells in mammals and form an essential part of the innate immune system. They are formed from stem cells in the bone marrow. They are the ‘first responders’ in case of a bacterial infection. (Interesting fact: they are the predominant cells in pus, accounting for the yellowish/whitish appearance.)

Once above 0.5 we were allowed to remove our gowns and masks, but hospital personal and anyone else entering her room had to keep masks on. Hand washing and sanitizing were still very important. With her neutrophil count above 0.5 Kate had limited protection against  bacteria, but still had no immunity against common viruses (e.g. the common cold), or fungus (fungal infections). Isolation was very important.

As Kate recovered her blood counts her ‘neutropenia’ (neutrophils below 1.0) continued to have ups and downs. Her body was weak and needed ongoing protection. She was also taking heavy doses of methylprednisone to control her graft versus host disease, and cyclosporine to suppress her new immune system (to prevent GVHD). When she exited her room she was required to wear a N95 mask to protect her from airborne viruses. She was also to stay away from other people as much as possible. Her room continued to be kept as a ‘clean space’ and her home was also meant to be a ‘clean space’ with limited visitors (at our discretion), because of her immune suppression.

As you all know, Kate wasn’t home long, she was back in hospital less than 72 hours after being discharged to home. When she returned to hospital, she was again confined to her room and protective isolation protocols were put in place again. Mask, hand washing, limited visitors (immediate caregivers and helpers only).

Now that we are back at Ste.Justine, on the post-BMT unit, this protective isolation protocol remains in place. We have GVHD, and the treatment of this is immune suppression which makes Kate more vulnerable to infection. Kate is allowed to leave her room her, but can only ‘play’ on the 3rd floor BMT unit. She can’t visit the playroom on her floor (post BMT recovery), or be near any other children or parents on the hematology oncology unit. Her room is limited to her nurses and to visitors that are ‘approved’. This means that as her parents, we can choose who comes into her room, but we have been educated to be cautious and limit how may people interact with Kate from the outside. It is for her protection as she continues to be immune suppressed.

We are so grateful for the offers of help and support. Many of you have been so willing to come and see us in Montreal, and it is sooo difficult to say no. But we have to. Believe me, we would love the help and assistance, as there is no doubt there is a lot fatigue among Brian and I and those who have been helping us. But to protect Kate, I have to say no.
We have limited our ‘caregiving team’ here to what is essential and to those that have been trained and understand the isolation protocols and we are grateful for their continued support.

Once Kate returns home, she will continue to be immune suppressed and we won’t be able to have visitors at our home. She will get to go outside and see people from a distance, but not much more. Crowded places are a risk for her. This protective isolation will end when her immune suppression ends and when her CD4 +T helper cells start to recover. This will be another important milestone for us as it will signal that she has better protection against viruses and fungal infections.

 CD4+ T helper cells are white blood cells that are an essential part of the human immune system. They are often referred to as CD4 cells, T-helper cells or T4 cells. They are called helper cells because one of their main roles is to send signals to other types of immune cells, including CD8 killer cells, which then destroy the infectious particle. If CD4 cells become depleted, for example in untreated HIV infection, or following immune suppression prior to a transplant, the body is left vulnerable to a wide range of infections that it would otherwise have been able to fight.

We are watching what is called the CD4 count in Kate’s bloodwork. A consistent count above 200 is the goal.  We anticipate that being sometime in October/November. At that point restrictions will be lifted, but we still need to be cautious as Kate’s new immune system will have not been exposed to viruses that are common and will have to be revaccinated against childhood disease. 

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

 

 

110 Days

It has been 110 days since Kate had a bone marrow transplant. 110 days since we jumped off that cliff with Kate in our arms.

It’s been 16 weeks since my 10-year-old son bravely walked to the OR to give his bone marrow to his sister.

To Hope to curb the disease that we were told she would die from.

It’s been a little over 4 months in hospital for Kate…for our entire family. Watching the bravest, most stoic and loving child endure what would reduce most of us to tears. To watch her suffer. To watch her smile. To see the recognition in her eyes that she knows she has no choice. To know that who she is, the life she has had, the choices we’ve had to make for her, the challenges she has had to face are beyond anything anyone could ever have imagined or what many can understand.

How do I express my feelings after 4 months of this. Of watching this. Of knowing what I know. Of living what we have lived. Of feeling what I have felt and continue to feel.

Of interrupting her life and of being terrified I won’t be able to get her back to it.

My greatest fear was disrupting the life she had. And she did have a life. It wasn’t easy. Despite the smiles on our faces to mask the daily pain and challenges, it wasn’t easy. It has been 8 years of not easy. But it was her life and she was living it and making the best of it and we were (so far) keeping her safe and the monsters at bay.

But now…

…now there is uncertainty again. Where there was confidence in managing her disease, there is fear of her recovering from this. Where there was excitement, there is a sense of loss for her – time at school, time with friends, time with family, time in the water, time spent outdoors at parks – on bikes – running. Where there was a sense of Kate being happy, I’m now not sure.

The day-to-day fatigue dealing with chronic illness and developmental challenges has been replaced by profound exhaustion. Endless nights on the hospital room cot, sitting by her bedside crying over her small frail body and wondering “what have we done”, moments of hope for recovery that slide back into complications and fear for her life. Grief. Loss. Sadness. Fear. The emotions mix in a melting pot of pit of the stomach sickness.

You try to hold onto Hope. Because Hope is real and it is powerful. But you are the mom and the dad and you are responsible and Hope gets overshadowed by Fear. And it’s a dance between the two. And you want Hope to win and you want to understand Fear and accept it, to not let it take over and it is an exhausting day-to-day struggle. And you feel worn out. And you feel annoyed at constant reminders to “stay strong” “be positive”. You want her back. You want another chance at the decision to do this. And you can’t. There is nothing to do but go forward.

I try to remember who this is about. This is happening to Kate. It is her life so severely and terrifyingly interrupted. But as much as it is about Kate and has always been. It is about Jack and Brian and Julie and our family. Being scared for them, for us…for myself and how we will come through this.

It has been 7  years and 9 months of facing down the SIFD monster. A monster that had no name. A monster we fought to name. A monster we had come to understand and had learned to live with, but a monster we were told time and again had surprises for Kate. Nasty – life limiting – surprises.

I know she is strong and she is incredibly resilient, and I’m jealous of the kids who go home. Who suffer less. I am jealous of the kids playing in the park and crying over scraped knees.

I am amazed that she still smiles and giggles. That she still belly laughs at silly antics and strives to make friends with anyone she meets. That she loves her nurses and trusts her doctors. Where does that LIGHT come from? How can there be that much strength and will and love and FIGHT in such a tiny little girl?

 

This has been her life and we’ve brought it to some sort of crazy junction of Hope that she will get better and live an easier life, or Regret that we have chosen poorly and we have hurt her beyond repair.

Which is it?

I think she lives the Hope and I feel the waves of Regret.

The answer isn’t clear yet and it will be many more weeks and months in hospital and delicately stepping through this new existence of the post-BMT world before we know.

We are relearning her disease and what we have transformed it into by doing THIS. The doctors don’t even know. I think deep down we knew it would be up to us again to forge the path and guide them, lead them, help them navigate Kate. I don’t think they realized that Kate would have the lead. I bristle at the work I have to do to get them to listen, to engage, to discuss and debate and understand that WE, Kate and I, know this best. That we have the lead and they need to listen, support and follow. So I step back and start to build the relationships Kate needs to be safe. It’s not easy.

It’s not Fair. It’s hard. It’s exhausting.

It is what it is.

Put one foot in front of other. Take one more step forward. Ignore the pain and heartache. Wait for the good moments. Try to pain attention to them and enjoy them. Get through the bad. Try to recognize the Good and the Bad.

Try to live our best life. Despite.

Try to help her live her best life. And Jack.

How did we get here?

 

I just want her to be well.