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.

 

 

 

 

Day – 3

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Time here is surreal. It crawls by at some moments, (e.g. when you are with an irritable Kate). And flies at others. I can’t believe a week is almost over. Today is Day -3.

Day 0 is the day of the transplant.

April 28th, the target date I have in my mind for going home, seems so far away.

Time is warped here.

Clocks move quickly and slowly at the same time. A moment can last forever and also pass so quickly. Kate can look good at one minute, and change the next. There is no solid footing to be had, and I have learned that the search for it is futile in this experience. I need to surrender to what is and let this happen and unfold, while being as vigilant as I can. I marvel at how we got her – how did this happen?

There is nothing more to do. One foot in front of the other, pace myself hard – but intelligently – know when I need to back off and know that I have another gear in me when it is needed most. See the race course as it’s been laid out. Push hard for that awesome outcome and be able to let go just a little of expectations when I need to

It is a Marathon.

A true physical and emotional marathon and I am grateful I have the experience as a distance runner to carry me through. This is not for the faint of heart. Everyone here is holding onto their values and courage with their nails dug in. Holding onto the things that give them strength. Foundations they have built over a lifetime. It is amazing to see how the human spirit can thrive in this type of environment – what people draw upon with this kind of suffering and stress. Raw fear and raw hope.

Kate is part of that for me. She has helped build me up to be the mom I need to be in this moment. We are a unit she and I. We make each other whole. Her laughter, her playfulness, her excitement at the simplest things, and even her tears.

I feel her strength and bravery and it helps me to fortify mine. That is an incredible gift that she has brought to my life.

 

Julie

Kate’s Bone Marrow Transplant

Yesterday, Monday, February 16th Kate was to be admitted to the Centre Universitaire Hospitalier Ste.Justine (Ste.Justine) in Montreal for conditioning therapy in preparation for an allogeneic stem cell transplant. A bone marrow transplant (BMT) on February 23rd with her 10 year old brother Jack as the donor.

Remember my last post about decision making. This is the decision that has been made. It is the biggest decision of our life and it has been incredibly difficult to make.

I am writing this, and we are not at Ste.Justine. Kate’s BMT has been delayed due to unforeseen medical complications. It might be a good thing as the Ste.Justine team gets better prepared for her and the medical complexities that surround her. BMT is never straight forward, but for Kate is it even more complex. The protocol ‘checklist’ has to be edited and designed to be specific to her medical complexity. We don’t have a new date yet, but this breathing room has allowed me to write this post and to share some information about this journey.

 

 

 

Where it began…

Many of you who follow this blog, or who have visited Kate’s CaringBridge site know the history of her diagnostic odyssey, medical journey, and her ‘status’ as the first child diagnosed in the world with a rare form of mitochondrial disease called SIFD.

Once the discovery of SIFD occurred a small group of children were identified who were diagnosed with the same recessive genetic disease – about 15. Many of those children were diagnosed posthumously. But one child who was alive was doing very well, and was not suffering from any of the complex medical conditions the other children with SIFD were suffering from. That child had had such acute presentation of SIFD at age 9 months (specifically the sideroblastic anemia and inflammatory cascades), that he had received a ‘hail mary’ bone marrow transplant. And it worked. He has not suffered any further episodes, and is the only known case with SIFD who has developed neuro-typically.

And so began the conversation with us two years ago about considering a bone marrow transplant for Kate.

 

Imperfect information…

So we don’t have perfect information about the impact of a bone marrow transplant for Kate. We do know that to date 4 children have been transplanted worlwide for SIFD. 2 have survived and are doing well – with no further episodes, and 2 have sadly passed away as a result of the procedure.

We know that the BMT would stop the episodes Kate is having, it would cure her sideroblastic anemia and it should prevent further damage from the disease. But this latter aspect of the BMT result is not clear. Kate’s brain, heart, kidney and liver could still be impacted further post-BMT.

We expect a better quality of life for Kate post-BMT, but getting there will require a significant amount of sacrifice and suffering on her part. A bone marrow transplant is not an easy thing to go through. It is considered one of the most invasive and difficult procedures in medical practice. We don’t know if she will get through it (5-10% chance of mortality), or if there will be unforeseen consequences because of the bone marrow transplant (5%).

We do know, based on the ever-changing information and insight we have into SIFD, that without intervention, these children tend to die before they reach adulthood. They suffer a ‘catastrophic event’ characterized by an acute onset cardiac condition (cardiomyopathy) or an acute episode of inflammatory cascade that presents like an idiopathic septicaemia.

SIFD is progressive and it is degenerative. There is no escaping that.

What we don’t have is the crystal ball to tell us when this might happen.

We have been given a choice – and our medical team feels that the BMT is the best course of action to pursue. Our other choice is to live with SIFD and take our chances on Kate dying from this disease.

 

What is a bone marrow transplant…

There are a ton of websites dedicated to BMT. The one I like best is www.bmtinfonet.org

 

Jack’s role…

In an allogeneic stem cell transplant, a donor is required. Typically the donor is sought out from within the persons immediate family as a relative can offer a better ‘match’ and the better/stronger the match the less risks there are with the transplant. Sibling matches are considered the best.
Neither Brian or I are a match.
Jack is a perfect match for his sister. A 6/6 sibling match.

We are grateful that Jack has agreed to take on this role for his sister. He understands that his body is strong and he has something he can share that might help Kate. His first reaction was that he might end up with a ‘clone’ sister (pretty funny). We’ve described the process to him. The surgery he will undergo. How he will feel, and the impact it will have on him and his activities. As is his nature, he has accepted this role with little drama.

He is not a hero, but he is very brave.

I wouldn’t have expected anything different from Jack. He is an incredible boy and one of Kate’s greatest champions.

 

Kate…

I am lucky to have two incredible children. While Jack is brave, kind and empathetic, his sister is courageous, stoic, strong, loving and TOUGH. AS NAILS. She is a survivor. And she is one of the happiest people I know despite it all.

Kate will require 5-7 days of intensive ‘conditioning’ before receiving the transplant. To quote one of her doctors, they need to bring her to the brink of death and then bring her back again. Her intensive chemotherapy is needed to kill off all of her bone marrow to prepare her body to receive the transplant from Jack’s body.

The chemotherapy will be introduced through a central venous line (Broviac) that is inserted into a large vein above Kate’s heart. Because of the multiple blood draws, the infusion of chemo, medications, and the blood transfusions Kate will require, a central line is required to easily access Kate for these procedures.

Once Kate has finished the conditioning regimen (days -10 to 0), she will receive the transplant. This is a minor event I am told, but an emotional one, as the stem cells collected from Jack’s bone marrow are infused via an IV bag into Kate’s central line. The stem cells then find their way to the bone marrow space and start to set up shop.

Day 0 – Day 7 Are supposedly the most difficult. Kate will be very sick from the effects of the chemotherapy drugs and immunosuppression drugs. She will be on full isolation for close to 8 weeks. I can be with her, but will need to be gowned, masked and gloved at all times. Access to her and her room will be highly restricted.

Kate will lose her hair, she will have nausea, vomiting and diarrhoea, she will have sores in her mouth. The BMT team is ready to support her through all of it, and prepared to deal with any unforeseen issues that might come up.

Day 7 – Day 40 will be a period of waiting for engraftment – waiting for Jack’s bone marrow to take over and start to grow in place of Kate’s. Graft Versus Host Disease and rejection of the transplant are the risks during this time – as well as organ failure, bleeds, and infection. Kate will still be feeling unwell and recovering from the conditioning regimen and the transplant.

After 2 months – If all goes well and Kate is stable, she will be discharged to home. The first 6 months will be critical as wait for Kate’s T-cells to show themselves again. Until that time, Kate will have no functioning immune system and will need to be in isolation at home. Her nutrition and her hygiene and protection from any mold, disease, or illness are extremely important. A  common cold could be devastating. She will be required to wear a mask when she leaves the house and she will travel to Montreal and CHEO weekly for medications, assessment, medical management and follow up. We won’t be allowed any visitors into our home at that time.

Post 6 month – If all goes well, we expect Kate to be able to return to school and other activities. She will continue to be on several medications as her new immune system grows and gets stronger in her body, and she will be monitored closely. It will take at least 2 years for Kate to have a fully functioning immune system.

 

The Plan…

We are currently waiting for a new date for Kate’s BMT. Her bloodwork was poor last week and a surgery to install her Broviac could not go forward.

We are mobilizing friends and family to help us while Kate and I are in Montreal. We are grateful my parents have moved here for a few months to support us.

It is not clear what we need right now while in Montreal or when we are discharged to home, but we will be sure to ask as support will be welcome and much needed.

 

The path ahead…

It has not been an easy journey – these past 7 years. Having a child that is living with a long term chronic and acute illness that is ultra-rare has changed me / us / our family in ways many people could not even imagine.

Kate’s life, her journey, her diagnosis, have changed the lives of others.

That in and of itself is incredible. So much power and awesomeness that this little girl has brought to the world.

So the journey continues. And Kate will be awesome again. And she will help others to learn, and to live better lives and to not be devastated from the ravages of this disease.

That is not a gift I would be willing to give on Kate’s shoulders, but it is our reality. It is her reality.

 

I am grateful to the incredible medical team we have at CHEO and Rogers House, and for their guidance in this decision.

I am grateful to the team at Ste.Justine, and the international SIFD team for all the preparation they have done for Kate.

I am grateful to all of you who are following our story here, on CaringBridge, on Facebook and Twitter.

 

Life is hard – there is no doubt. And others have it harder – some easier. This is our place in life and we are challenged with making the best of it and living it the best we can and with as much ferocity and compassion as we can.

Go Kate Go! 

 

Julie