On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk MLL + Infantile Leukemia. On November 18th 2015 , she took her last breath. This is her story of hope and love in the face of cancer and despair. Phoebe always brought the joy and continues to inspire us to make a difference. It is best read from the beginning. Thank-you for visiting.

Thursday, March 29, 2012

Happy doctors. Joyful news.

Throughout this journey we have witnessed many different emotions on the faces of Phoebe's many doctors. Among many others there have been, sadness, sorrow, exhaustion, anxiety, fear, worry, confusion, frustration, regret, surprise, amazement, and joy. Today, thankfully, after hearing our doctor tell us more results of Phoebe's bone marrow tests, we saw joy. I heard the chimerism results today while we were at the hospital and they are 100% donor cells. In both Phoebe's bone marrow and her blood. This is wonderful news as it means that Phoebe's body, her bone marrow, is no longer producing cancerous cells, only donor cells. Healthy cells.

Later today, in the evening, I heard pure joy and happiness in the voice of Phoebe's doctor who called us at home as soon as he saw the final results. After running MRD (minimal residual disease) tests, Phoebe's bone marrow is negative for Leukemia. It is also negative for the MLL (multi-lineage leukemia) gene rearrangement and not a single solitary bad cell was found. This doctor told me that this news made his day. A happy doctor delivering good news is a wonderful thing.

To say that this news made my day is an understatement. It made my year. My life. And while the future holds many uncertainties and it will be years before Phoebe is considered "cured", I am taking this good news and running with it. As far as I'm concerned my Phoebe is cured. I believe she is and I am going to try hard to ward off the dark clouds of worry that often plague a parent whose child had cancer.

Phoebe is a wonderfully joyful soul. She has had a very rough start to life and she has fought harder than any person should have to just to survive, but survive she has and for the most part she has done it all with a smile on her face. I have learned more on this journey that I ever thought possible and most of these lessons I have learned from Phoebe.. She has taught me the value and importance of time and the pure joy that can be found in simple moments. That at the end of the day, love is all we need. She inspires me to be a better person and I am so proud that she is mine.

And finally, speaking of joyful and simple moments, today I felt closer to "normal" than I have since I learned my baby had leukemia 17 months ago. Today for the first time in her life, Phoebe went to a grocery store. There is a small island community just across the Mississippi river from St. Jude and in it is a very small, very quiet, and most importantly, clean, grocery store. The perfect store for someone like Phoebe who has to avoid crowds and public places. We steered clear of any people and went in quickly to pick up some things for a picnic. And then, just like any other mother with her two kids, I strolled down to the bank of the Mississippi river and had a picnic lunch with my two girls. If Jon had been there, it would have been paradise but it was pretty wonderful all the same.

I have so much hope for my family and a cancer free future that at times it is hard to contain. I want to shout it from the rooftops that my baby is cured. That after fighting harder than any parent should have to fight for treatment of my child's relapsed leukemia, Phoebe is here. She is in remission and the future is bright.

Tuesday, March 27, 2012

And then there were three ...

And then there were three ... earlier this evening many of the things that we have collected on this journey were packed up and after tearful goodbyes, Jon hit the open road. Ottawa bound. And we miss him already.

We are hoping to be only a few weeks behind him, but I have a feeling it will be a long, lonely, but also extremely busy and chaotic few weeks. Phoebe is very good, but also extremely high maintenance with all of her medications, appointments, and central line maintenance and her big sister is non-stop action. I think it will be fun. Good chaotic fun. And while we are here, I am sure that Jon will be equally as busy, only hopefully minus the chaos, at home.

It is hard to believe that after almost 6 months in Memphis, one member of this family is heading home. Life as we know it, or as we knew it, is becoming a reality.

The initial results of Phoebe's bone marrow look good. There is no sign of any leukemia cells in her spinal fluid or bone marrow when viewed under the microscope. Now they will look deeper, at the cytogenetics of the sample, to look for the multi-lineage leukemia gene (MLL), and to test the DNA of the cells to make sure they are all donor 2 cells - we don't want to see any of Phoebe's original cells because that is where the cancer originated. We are very hopeful and happy with these initial good results.

As we were walking back to the house after waving our good byes, until Jon was no longer in sight, Mae pointed out the stars and asked if we could make a wish. We did and she told me that she wished "for daddy to get to Ottawa really, really soon and for us to get there soon too. So we can be together". What a wonderful wish and I am hoping and praying that it comes true.

Saturday, March 24, 2012

Spring is in the air ...

This week's chimerism test shows 100% donor 2 cells.  I imagine one day we won't have this weekly check up of Phoebe's blood and the thought of this fills me with equal parts joy and anxiety.  For now it serves as a wonderful sigh of relief. Phoebe Rose, she really does rock.  

This Monday Phoebe will have a bone marrow aspiration, lumbar puncture, a visit with her neurologist and opthamologist and an ultra sound.  The first four of those things will be done while she is sedated.  The bone marrow aspiration and lumbar puncture are to look for leukemia and to check the DNA of the cells.  Our bone marrow is essentially the factory that makes our blood cells and because Phoebe's cancer is of the blood, the bone marrow is where it started, where it relapsed and where we really hope it is nowhere to be found again. Ever. The lumbar puncture is being done because at diagnosis, Phoebe had a tiny amount of disease here, in her central nervous system also.  And the neurologist and eye doctor are both going to be checking to make sure her eyes and intracranial pressure are still normal and not affected by the recent addition of new drugs.  Many people will be convening inside the small operating room on Monday and we are hoping and praying that they have only good news to share.  We are anxious and worried but also incredibly hopeful that these results will help Phoebe continue on this wonderful and much needed path to a full recovery and a cancer free future.

In the meantime, Spring is in the air here in Memphis.  It is beautiful. Trees are blossoming, flowers are blooming and Phoebe and Mae are growing.  Yesterday while at the park, Phoebe climbed the stairs up to the slide. On her first attempt, she climbed up three steps, turned around and sat down to take a break and clap her hands. She has since been up and down those stairs and down the slide (with help) countless times.  She is very close to walking and for the first time, thanks to some weight she has put back on, her legs look like they might allow her to do so. 

We have heard that Spring is very much in the air in Ottawa too, and so Jon is heading home early next week. Rather than continue to let cancer run our lives, we have decided to attempt to put some of the pieces back together and this includes a return to work. This event is bittersweet.  Sweet because it means that this part of our journey is coming to an end, that Jon is now able to return to doing what he loves, and that this end will hopefully have us all back and reunited in Ottawa soon.  And bitter because we will miss him so very much.  

St Jude will miss Jon very much too. He has now donated close to two gallons of platelets and is on a first name basis with all of the nurses in the donor room. Jon and Phoebe were also recently filmed for an up and coming St Jude public service announcement. This is one of a few fundraising events that we have done with St Jude. It is our way to give back, to tell Phoebe's story and to raise awarenes for St. Jude and their mission and goal of curing pediatric cancer.

St. Jude operates as founder Danny Thomas dreamt it would fifty years ago, and that is solely on fundraised dollars, where no child or family is turned away due to inability to pay. It is with the help of these dollars, 1.7 million a day to be exact, that care is provided to countless children from all over the world, where housing is provided for their families. It is with these dollars and the help of brilliant minds that life changing research is happening, where survival rates have increased, lives have been saved, where children have been able to fight, or have been given one last chance to beat their disease. Where groundbreaking changes to the way that cancer is treated have been made. It is with these dollars and under the wonderful, supportive and unforgettable roof that is St. Jude Children's Research Hospital, that Phoebe's life was saved, where her cancer last reared its very ugly and unwelcome head and where our lives were forever changed.

And now as this chapter of our journey at St Jude is coming to an end, that is the chapter in which we live in Memphis , not the future chapters where we visit Memphis for check ups and praise from Phoebe's doctors. Now that this chapter is coming to an end, it is very hard for me to not become emotional when thinking of what this wonderful hospital of hope has done for us. How far Phoebe has come. And although her journey is far from over, we have hope and we believe that it will have a happy ending. Part of this happy ending will be in the results of Monday's tests and in the return of this family to home.

Tuesday, March 20, 2012

Big sister Mae

Mae was 20 months old when Phoebe was diagnosed with cancer.  Close to the age that Phoebe is now.  She understood that I was having a baby, and even helped to choose her sister's name.  Learning to say "baby Phoebe" very sweetly and often in the final months of my pregnancy.  She was aware, excited and eager to welcome Phoebe into the world. 

Phoebe was a big, beautiful and very calm baby during her first month of life and life with both of my girls at home was wonderful.  Thinking back to it now, it is like it never happened.  Like it was a dream.  Month two of Phoebe's life would see us move from our small house to a much larger one.  We were happy but very exhausted and stressed.  Phoebe was fussy and we were desparately trying to figure her tiny self out, like many parents do with a new baby. I remember telling friends and family when they commented on her healthy size and appearance that she was fragile.  There was something about Phoebe that no one else could see. I knew in my heart that something was wrong.

Just as I knew this in my heart, when I heard the diagnosis, the news of relapse, and what at times was considered her very small chance for survival, I knew that she would be okay. I have never stopped believing, even in the face of complete chaos and heartache, that Phoebe would be cured.  Each day we cling to this hope and this belief in what was once considered almost impossible.  Phoebe's cure. 

The wonderfully full and happy first year at home with my children, the year that I had been imagining, expecting and looking forward to when I was waiting for Phoebe's arrival was not as it should have been.  Instead our family bonded and found joy in a small hospital room.  The life that Mae knew with Phoebe, Jon and I at home was no longer.  Mae spent fifteen months living with only one parent at a time, missing her mum or her dad and her Phoebe.  She has now been away from her "home" for close to a year.  She has seen Phoebe in pain, in the hospital, watched as she is given many medications.  Through all of this upheaval she has thrived and I am so proud of her.  She is a joy.  A pure joy to be around and to watch in action.  She loves, laughs, plays and welcomes new children to the playground with enthusiam.  She is smart and creative and kind and everyone she meets, whether they be children her age or staff at the hospital, is a friend.  She exudes warmth, happiness and love and I smile just thinking of this. 

She is quick to introduce Phoebe, saying proudly to many, "this is my baby sister Phoebe".  If she is given a sticker, she asks for one for her Phoebe.  She gets regular kisses and hugs from Phoebe.  The latest style of hug being the standing up kind, Phoebe leaning into Mae, her head buried in her chest giggling.  Giggling and loving this closeness. 

Today, Phoebe's blood work looks normal.  Wonderfully normal.  Her chimerism is 100% donor cells and her liver enzymes are coming down.  She is often tired as her body is now adjusting to the steroid wean, but she is working hard to do many new things and everyday brings with it a new trick or food tried. 

And now that a life together at home, at our home in Ottawa, seems amazingly within reach, I find myself daydreaming.  Daydreaming of picnics and backyard Barbeques, of making our house that we have lived in together as a family of four for only 2 short months, into a home.  Of making memories, gardening, riding bikes.  Of planting seeds and watching them grow into beautiful flowers and then waiting for those perfect plants to appear the following spring.  Watching them grow strong, healthy, and beautiful year after year after year- just like we will our Phoebe Rose and her big sister Mae.

Friday, March 16, 2012

Rock-a-bye Sweet Baby Pheebs

Tonight for the first time in weeks, Phoebe is fast asleep before midnight. Hallelujah and thank you to the kind folks at Target House for bringing sweet relief in the form of a rocking chair to our apartment today. We are weaning the steroids but I think that this renewed love of sleep is a sign that Phoebe has really just missed her rocker. Thinking back, she has spent a lot of her life sitting in a rocking chair with Jon or I and I have missed rocking her to sleep. Singing to her long after she has closed her eyes and just cherishing the quiet and her in my arms. Now, this beloved chair is back, and just like that, things are looking up. We may actually get some sleep tonight.

This return to a somewhat more normal sleeping schedule and the delivery of the glorious chair could not have come at a better time. We are counting down the days, 10 to be exact, until Jon starts the long drive home to Ottawa. We will.
miss him and life is much easier with both of us around, but we desperately want life to return to some kind or normal and we believe that if we start to put some pieces back together, the rest will hopefully fall into place.

And so homeward bound he will be with a list and a plan. A plan to return to work, to reconnect with friends, and a list of things to do. Things like build a fence and take down really terrible ceiling fans.

If you build it we will come.

As for Phoebe, we don't yet know how much longer she will be in Memphis and to be honest, I am a bit afraid to ask. Worried that the answer will be months instead of weeks, but all things related to her rash, gvhd, and liver enzymes continue to improve. She is also becoming very comfortable cruising around the furniture and pulling herself up and this is how she spends most of her playtime. She is thriving, trying something new every day and we are so happy and relieved to see her doing so well.

Day + 106 today ... Go Phoebe go.

Monday, March 12, 2012

Day + 103

There is nothing quite like a baby on steroids. Nothing. And a very headstrong toddler on steroids is even worse. W are on day 7 of steroids to treat Phoebe's GVHD of the skin and she has spent each of these days eating, laughing, playing hard, drinking, gaining weight, and screaming like I have never heard a baby scream before. We are no strangers to fussy babies, but the past few days and nights have been difficult. This morning, the only thing that would console Phoebe at 3 am was her high chair. Her high chair tray full of her favourite BBQ chicken, cheese, and mandarin oranges. It is sad because all of this behaviour is related to the steroids, she has no control over how she feels or acts and she can't communicate any of this to us. There is screaming, throwing food, and then, when it is all over, a lot of kisses, hugs and giggles.

Thankfully, we have started to wean the steroids. We are hoping to see an end to these intense mood swings and insatiable hunger by early next week. Phoebe's rash is not as angry as it was and on parts of her body it is very faint. The plan is to continue to wean the steroids as long as the rash doesn't flare up and then keep going with the immuno-suppression for another few months. But it all depends on Phoebe and how her body and ths GVHD responds to treatment.

Phoebe's visit to the hospital went well today. Her counts are all steady and stable and her critically high liver enzymes are on their way down. From 1200 and 1800 on thursday to 300 and 900 today. They are still high, and the 900 is still critical, but they are moving in the right direction. The doctors think that the cause is a virus and not GVHD and have cancelled plans for a liver biopsy. They are not certain which virus has caused this and so far all tests have come back negative, but as long as we move out of the critical zone, that is okay right now.

And so now, we take things as they come, putting one foot in front of the other and slowly moving in the direction of home. Boxes are being packed, toys sorted, and plans made to send one member of this family on the road to home. The rest of us will hopefully follow soon enough, once Phoebe is ready and all of her complicaions and issues have been put to rest. What a wonderful and sweet reunion that will be when it happens. Feels good to make plans and to get back to some kind of normal, or at least try to.

Happy day + 103 ... Phoebe Rose has passed another major milestone on her road to recovery.

Thursday, March 8, 2012

Day 98 and 100%

Phoebe is most definitely taking the long road. This road, we have discovered has many beautiful, magical and joyful moments, like today's and other consistent 100% chimerism results. But it also has many bumps, bruises, and difficult paths. Today was a day that exposed many of those things.

We are still working through graft versus host disease of Phoebe's skin and thankfully a skin biopsy has confirmed this so we are not treating something blindly. Her rash after 5 days of steroids is not much better, and the steroids are making her insatiably hungry, but the plan is to continue with this treatment. Good things and results come, as we have learned, to those who wait.

Today Phoebe's blood work showed that the liver enzymes that have been slowly climbing for weeks, jumped from 200 and 300 to 1200 and 1800. There was a note on the print out of the blood work that read "critically high". An ultrasound of Phoebe's liver was done and it appears normal, which is good news. Despite the rash, and the liver issues, Phoebe appears to be doing well and one of her doctors today commented on how good she looks. Only in the world of cancer and bone marrow transplants, can the previous state be called looking "good".

But, good she is and fine she looks. She is eating, drinking and even attempting to stand all by herself. She has been working hard on the downward dog and tonight she mastered it. She was very proud of herself and repeating something that sounded like stand, or "std" over and over as she worked on her new skill.

In regards to Phoebe's liver, the plan is to monitor it very closely and proactively treat everything and anything it could be. A biopsy of her liver will be done on Monday, this I think is to rule out gvhd although the doctors are not convinced that it is this. In the meantime, and because one of the concerns is that her liver issues may be related to a virus, they will be giving her a dose of immunoglobulins tomorrow. They have also started on another drug that we used in the past to treat veno-occlusive disease. They seem to have all of the bases covered and we are thankful but nervous and anxious to learn the true cause of all of this. To start to heal, and to put it behind us.

Today is day + 98, and Saturday will be the long awaited day 100. The day we never reached with Phoebe's first transplant. Despite these recent bumps, we will be rejoicing day 100 and the 100% chimerism that Phoebe is bringing to this day. We may be eating some cake, and there may even be wine. So, if the spirit moves you this Saturday, raise a glass to our sweet and feisty Phoebe. To her miraculous 100 days and to the many more wonderful days to come. Free from rashes and elevated liver enzymes and Leukemia.

Monday, March 5, 2012

Day + 95

We had a wonderful but busy weekend. Phoebe is back on many drugs and because she no longer has her ng tube to conveniently give her medications, we have to basically hold her down to give them. She cries and we apologize profusely. She is on a steroid, an immuno suppressant, an antiviral, an anti fungal, and a drug to treat thrush, which she has despite the anti fungal drug she is on. And she has a steroid mouth rinse to combat the gvhd that is thought to be on her lips. She is busy and we are exhausted. Her rash is still here but according to the doctors it is less "angry".

The plan right now is to continue to treat her gvhd with steroids for a maximum of 5 days. At which point the rash should have disappeared or be obviously responding to treatment. Following this Phoebe will continue on immunosuppression and we will begin the very slow wean of these drugs. At the end of all of this treatment Phoebe's new cells will once again have free reign, only this time without the risk of GVHD.


Phoebe's bloodwork looked good today. Her platelets and hemoglobin are slowly climbing and are now just a few tiny points from normal. Her white count, despite the steroids is holding steady. All good news. Her chimerism results should be available on Thursday and because we are nearing day 100, today a bone marrow aspiration and lumbar puncture were discussed today. This is to check for Leukemia, the chimerism of the cells, and in Phoebe's case, her intra-cranial pressure. In typical Phoebe fashion, however, all is not simple. The steroids that Phoebe is on can cause increased intra-cranial pressure and because this is something that Phoebe has had problems with in the past, the doctors want a reliable sample. All of this to say, that Phoebe's bone marrow aspiration and lumbar puncture will be delayed 2-3 weeks, so that her body is free of steroids. We are hopeful for good results, but the waiting will be difficult. You would have thought, after all of this, that I would have aquired some patience, but unfortunately, I have not.

In other Phoebe news, she is as always, amazing. She is acting more and more like a full fledged toddler and this evening she successfully pulled all of her big sister's drawing off the fridge and then laughed loud and full at Mae's frustrated reaction. She is opening drawers and pulling out all the contents, pulling up to get a better look at all she can pull apart. It is truly and simply, wonderful. Her big sister Mae is also amazing and getting very excited to make it home. She talks non stop about all of things she will do once we get there. She has it all planned out. She plans to have sleepovers with her cousins, to bring all of her dresses to these sleepovers - in her suitcase of course, to jump on trampolines, go on picnics, camp in the backyard with Phoebe (and Jon and I), sleep all by herself, make new friends, go to school, learn to ride a bike ... her list is long and beautiful and I wish with all of my heart and every part of my being that her and Phoebe's young lives are no longer interrupted and affected by this cancer. That we are able to do all of those wonderful and very simple things that many take for granted.

Everyday I marvel with pure joy at how far Phoebe has come. At all she has done to beat down this disease. And everyday I plead and I wish and I pray for continued good days and a simple future. I don't wish for grandiose or complicated things, just to live life as a family. For my kids to grow up and experience and do all that they so very much deserve to do. Together.

Day + 95 today. And I believe the future, our future, to be bright. Go Phoebe go.

Thursday, March 1, 2012

This too shall pass ...

Phoebe continues to have 100% donor cells and she is most definitely kicking this Leukemia's butt. She is still eating, pulling herself up, standing, babbling and saying new words. Her favourite thing right now is to give hugs and kisses to Jon, Mae and I. It really is a beautiful thing and it warms my heart.

The rash, however, is still here. And although it is not any worse, it is not better either. The cream does not appear to be doing its job. Tomorrow, Phoebe will have a skin biopsy to help to determine if this is GVHD. The doctors are going ahead and treating it as such before the biopsy results are available because they are convinced it is and they want to keep it under control. GVHD is essentially the new stem cells attacking Phoebe's body. It can be life threatening and is something that I have seen many children suffer from. Phoebe's liver enzymes continue to be elevated, and this is another area that can be affected. We really don't want it to get any worse and so although the prospect of Phoebe being on more medications that carry with them many side effects scares and worries me, I think the alternative is far worse.

Treatment for GVHD is steroids, and the doctors plan to use as small an amount of these as possible. The steroids will hopefully burn out the GVHD and then Phoebe will also be on immuno-suppression. She will be on this medication for 4-6 months, if all goes well and its job is to prevent any more complicatons. It is, as much of this is, a fine balance. Weighing side effects with treatment, and ensuring that the delicate balance of immuno-suppression is there. Just enough to prevent GVHD but not too much as to affect these new and hard working cells.

There is one good thing about GVHD and that is that statistically, patients who have it have a decreased risk of relapse. I will add this piece of information to my list of all things good and positive about all of this, and think of it when the alternative and worrisome thoughts work their way into my mind.

As for the future and a possible homecoming, it will definitely be delayed. For how long, we are not sure and we
are taking things as they come. Phoebe will not be sent home with active GVHD, so that and all other things transplant related will have to be stable. How long all that will take will depend on Phoebe and how her little body responds to treatment. And really, as long as we are bringing home a healthy and Cancer free Phoebe Rose, it doesn't matter.