On October 26th, 2010, at 9 weeks old, Phoebe Rose was diagnosed with high risk Infantile Leukemia. A rare and not well understood, difficult to treat and cure, Leukemia. This is her story of hope and love in the face of cancer and despair. It is best read from the beginning. Thank-you for visiting.

Thursday, April 17, 2014

Port-free 2 visit Phoebe

We are home from St.Jude. It was a busy trip and in typical Phoebe style, full of surprises. This trip reminded me of the nickname "2 visit Phoebe" that was given to us at SickKids because Miss Phoebe always seemed to have a trick or two up her sleeve at the end of the day. 

We arrived on Sunday and had our first appointment bright and early Monday morning for blood work. When Phoebe's nurse tried to access her port, she didn't get any blood return, just a spot of old, dark blood, and it wouldn't flush without Phoebe crying out in pain. This is not a good sign. She called the line nurse and we were sent for an X-ray. The X-ray showed Phoebe's port was completely broken, and the catheter (the tubing that connects to the port) was disconnected and appeared to be free floating in her chest, in and around her heart. The port is where Phoebe receives all of her chemo, IV medicines and also the source for blood work. It is surgically placed, sits under her skin and has a catheter that runs through a vein towards her heart. Unlike an IV that only lasts days, it is semi-permanent and can stay in for years. Phoebe had hers for about 9 months. 

After hearing this news and then also seeing it on an X-ray, I was terrified. I usually like to know exactly what is going on, but with this, I wished I had not looked at the X-ray. At one point, when Phoebe's doctor was describing where it was, I wanted to ask him to stop talking - I felt physically ill. There was talk of things that could go wrong and cardiothoracic surgeons, and for once I longed for blissful ignorance. These things that are just not supposed to happen, seem to always happen to Phoebe. 

Thankfully, the surgeon at St.Jude was able to remove the port and the catheter with image guided therapy, causing the least amount of stress to Phoebe. It took longer than expected and she has two new incisions - one in her chest and another in her side that once healed, will join her collection of scars. Phoebe has far too many scars on her little body and has been through far too much. I would like all of this to just stop now. Enough. 

After the excitement of the port removal and recovering from the shock of possibly needing open heart surgery, we moved on to the purpose of our trip - Phoebe's MRI, bone marrow aspirate and lumbar puncture. It seemed though that I was the only one recovering - Phoebe seemed fine throughout all of this. Happy even. 

Phoebe had her tests on Wednesday and while she was sedated she also had an eye exam. Her eyes look great, no evidence of papilledema and no need for glasses. This is good news as at one point on this journey we worried that Phoebe would suffer significant vision loss. Her MRI looks great, no evidence of disease, and her spinal fluid is clear of Leukemia. The preliminary results of bone marrow tests are negative for Leukemia and we should know the rest of the bone marrow results next week. 

Despite all of this activity and an extra trip to the operating room, Phoebe truly had a great time in Memphis. We pulled up to the hospital and she said "we're here!". She brought her "running shoes" and literally ran from the moment we left Ottawa to the moment we found out she had a foreign object in her heart. And she ran like the wind. There would be no more running after that though and just remembering all of her activity sent me into a panic. Instead, in the arms of a favourite nurse, she got a walking tour of the radiology area of the hospital, "where the grown-ups work". She happily showed anyone and everyone she met the books and toys she had in her backpack. Pulling everything single thing out and explaining in great detail the contents for one lovely volunteer who we first met when Phoebe was small and just arrived at St.Jude. "This is my Barbie book, but you can't draw in it ... here is my pony ... this is my mermaid book ... Ben, Ben ... can I show you something? Look what I have here, Ben". Ben is also known for his bag of toys - wind up toys specifically, and Phoebe had him pull out the contents of his bag too. Each and every toy was taken out while she peered in to see if he had anymore. It is a beautiful thing to see her enjoy herself on these trips as I worry that they are hard on her. To see her run the halls of St.Jude is truly heartwarming and a testimant to this great hospital. 

We hope to have more news soon but in the meantime, we will be enjoying Easter at home (a first since 2011) and a visit from the bunny who always knows where to find us. 

Go Phoebe go ... 

Saturday, March 22, 2014

The end ... of treatment

Phoebe had her last chemo yesterday. She rang the end of treatment bell and was cheered on by her wonderful nurses and staff at CHEO.  We left the hospital full of hope and joy. After 15 months of chemotherapy and steroids for this relapse, after radiation, and after treating this cancer for a third time, we are once again finished. It is exciting and terrifying all at the same time. Thankfully the excitement and joy outweighs the terror, but still, it is there. 

We have been here before. We have felt the joy and the hope and the terror of the end of treatment. We have worried about what will happen next and we have been heartbroken at news of relapse after relapse. Yesterday, we put worry aside and celebrated Phoebe. Phoebe doesn't know the fear of relapse. She doesn't worry that her cancer may return. She doesn't think in terms of data and statistics or odds. She is joy and life personified. She is hope and we will follow her lead as we always have. There is no way to predict what the future holds, for any of us, and it is much easier and more fulfilling to live each day than to worry about what happens next. This is what Phoebe does, and I believe that it helps her to thrive. It is, as one wise ICU nurse once said to us, the gift of blissful ignorance.

Childhood cancer is an unpredictable and terrifying monster. It has crept up on us when we have least expected it. It has surfaced in the middle of plans and completely turned our lives around and upside down, but I refuse to let it define us. At the end of the day, I am sure we will wish that we had worried less and lived more. After all, and as we heard a few times yesterday, to see Phoebe you would never know the obstacles that she has had to overcome, the struggles she has had to endure just to be with us, and I would like to keep it that way. I would like nothing more than for her to be "normal". She is our perfect leader in all of this, and with Mae, she has taught us how to live with childhood cancer. 

To be completely honest though, as hard as we try not to, we will live with the fear of relapse and the worry of side effects despite treatment being over.  Our reality is that "this" will never be over. Phoebe will be watched and monitored and tested for most, if not all, of her life. We live differently because of what we have been through, but rather than let it completely take over our days, we will put one foot in front of the other and watch Phoebe and Mae grow. It really is a gift. 

Yesterday, Mae and Phoebe climbed up and together they rang the end of treatment bell. They needed a bit of help, but they did it. It was a beautiful moment that I am thankful to have as a memory. Thank-you to CHEO and Candlelighters for recognizing the joy that comes with these small, yet very significant moments and for giving children and families a chance to celebrate and acknowledge the struggle and hardships of this life. Thank-you to CHEO's child life, Molly Penny and our wonderful nurses and doctors both near and far for celebrating and acknowledging Mae just as much as you have celebrated Phoebe and for recognizing that together, they are the most important members of this team. It is a beautiful thing to see Mae visit the hospital and be treated like the super star that she is and I will forever be grateful to all of our hospitals for this. Mae might be the only child out there that considers a visit to the hospital, a "fun time", but this speaks volumes for the hospitals that we frequent and the people that work there. She identifies each hospital for something unique. At CHEO, it is Molly Penny, SickKids has the play park that she loves, and at St.Jude, she loves the play rooms, wagons, and drawing pictures for our friends in the B clinic. She also prefers Memphis weather.  We all do. 

To Phoebe's doctors, nurse practitioners and nurses at CHEO, SickKids and St.Jude, thank-you for taking care of our girl. Thank-you to our child life specialists, interlink nurses, therapists, pharmacists, social work, technicians, researchers, fundraisers, volunteers, blood donors, friends and family. It takes a village and we are so grateful to have the team that we do. 

It is really hard to put into words just how grateful we are or how we feel about this army of people who have nursed Phoebe back to health countless times. How do you thank someone for saving your child? How do you put into words how this feels? I have no idea and I am often at a loss for words. These people who spend their lives taking care of children, researching cures, making things better, listening to parents, helping, providing shoulders to cry on or arms to hold us up when we are weak, who have saved Phoebe's life countless times, advocated on her behalf and given us hope. Who have sat with us on some of our darkest days and shared so many happy and miraculous moments. I have spent many days of this journey talking and venting and crying and questioning but also celebrating and laughing and sharing hope for Phoebe's future. To have this hope reciprocated is a beautiful thing. Together, Phoebe's army has saved our life. They have given us back the most precious gift. I hope that they know what they mean to us and to their many, many other patients and families. They are real life super heroes. Each and every one.

I am forever grateful and will probably spend the rest of my life trying to pay all of this kindness forward.

Speaking of paying it forward ... stay tuned for some big news about the second annual Parliament Hill Rally for a CURE. It is happening folks and there is strength in numbers. We are proof of that.

Go Phoebe Rose GO ....

Photo www.thesaltandlightstudio.com 

Saturday, March 8, 2014

Almost there ....

Counting down ...

Yesterday Phoebe received her last dose of vincristine, hopefully forever. Her second last dose of methotrexate, hopefully forever, and we started our last five day course of steroids. Hopefully forever.

March 21st we will have one more dose of IV methotrexate and then we are finished with this year or maintenance chemo and hopefully finished with all things cancer and chemo for a lifetime.

Phoebe is looking forward to ringing the end of treatment bell, eating cake, and we are looking forward to moving on and away from cancer.

It has been 15 months since Phoebe's last relapse and each day that we have with Phoebe and without this horrible cancer, is a gift. Watching her in action, playing with Mae and thriving, is just amazing and we look forward to many more amazing days.

Go Phoebe go.

Here is Phoebe on her way to her very first Gala. The Amazing People Gala. Thank-you all for voting for our amazing person. She was in the top ten and among many incredible and very inspiring people in her community. 

Telling jokes to pass the time at CHEO. 

Friday, February 21, 2014

A new vision ...

I am feeling especially thankful today.  Thankful for Phoebe's team of doctors and nurses, both near and far - together, they have done amazing things.

I have been filling out Kindergarten registration forms for Phoebe. A task that should only take minutes, is taking me days. It is proving to be emotional, and combined with Phoebe's upcoming end of treatment, I have honestly been a bit of a mess. 

There have been too many days when we worried and feared that Phoebe wouldn't see another birthday, let alone start kindergarten. At the beginning of all of this, when Phoebe was just a baby, my dad would almost always stop me before I started to share details about Phoebe's intense treatment. He would stop me and say, "wait ... let me get my vision". And then, "okay, there she is - running for the school bus". 

That day, the day that Phoebe will run for the school bus, is so close. It is amazing actually, that we have come this far. We are registering for school and about to complete this year of maintenance treatment. We are about to embark on a new journey without chemo and without the strange security that it brings. 

March 21st will be Phoebe's "last chemo". Our end of treatment. We will add a third end of treatment gold bead to Phoebe's now over 50 foot necklace of courage beads to mark this special occasion and we will hope and pray that this is it. 

Today, we had a visit to CHEO for blood work and chemo and I prepared myself for a difficult day. I had heard that Phoebe would be switching clinics and doctors once she completes treatment, and the thought of this honestly had me close to tears and losing sleep. Considering that no one really knows what will happen when we stop chemo, and that the risk of relapse is high, to make changes at this fragile point seemed crazy. It might not seem like a big deal, but there is so much history and heart ache tied in to our experience at CHEO and this particular proposed change to the post bone marrow transplant clinic, at a time filled with so much uncertainty, brought me right back to July of 2011 and Phoebe's first relapse. I have come to realize that there are many things about this particular time that I have not dealt with. At all. And anytime I am faced with CHEO related stress, I return to those days. Probably not healthy at all, but it is what it is.

The memory of being sent home from CHEO with a baby who was thought to have a terminal cancer, sent home without any support or guidance, the incredible stress and heartache we felt, the feelings of complete helplessness, and the pure desperation, all of this came rushing back and with it came anger and resentment. It shouldn't have happened as it did, we should have met social work and palliative care, we should have been given a plan for pain management, we shouldn't have been left to handle it alone, even for a day, and we shouldn't have been judged for decisions to pursue further treatment. We should have been encouraged to seek a second opinion as soon as possible. Although this experience is in the past and thankfully Phoebe is here and healthy, a proposed return to the doctor we saw back then and a change in the schedule that we have become accustomed to, combined with the worry that fills our everyday, brought me back. Because of the history that we have with CHEO, the stress that at one time seemed to completely take over our days, the struggles and fights we once had, I went to the hospital today expecting to have to plead my case to stay with the physican that we have come to know and trust, expecting to have to argue the benefits of continuity of care. Instead, I was met with understanding and agreement. With kindness and caring. With a solution that is in Phoebe's best interest and thankfully, also good for my tired and weary soul. Considering the uncertainty that lies ahead and that no one knows what will happen next, for now, things will stay as is. No more changes. 

After all, Phoebe is more than the pages that make up her chart and the numbers and values on her blood work results and I am thankful that she was seen as a person, rather than just a patient. She is a very opinionated and feisty little person, who has come to love and trust her doctor, and the more normalcy and routine that we can keep in her life right now, the better. 

It is the little things. 

So, we are taking it one day at a time. Following the last date of chemo, we will "graduate" to monthly visits to CHEO and continue to go to St.Jude every three months for MRI and bone marrow tests. The treatment for Phoebe's liver iron overload will coincide with the monthly visits. We are trying to find a way to harvest Phoebe's tcells and store them, just in case she might need to use them in the future. There is a very promising new treatment using modified tcells that is showing great success in patients with relapsed Leukemia, and it remains one of the only things we haven't tried. It is also, hopefully, going to be offered at SickKids later this year. We hope and believe we won't need it, but it is always good to have a just in case plan in place. 

We are excited to finish this chapter and we long for normal. We are trying to put some pieces of our lives back together, and imagining Miss Phoebe running for that school bus. 

It seems though, that it is time for a new vision. 

Close your eyes ... can you see her? 

There she is ... marching to the beat of her own drummer ... running with friends in the school yard ... riding bikes with Mae ... blowing out candles on her birthday cake ... playing outside until the sunsets ... going on her first date ... throwing her graduation cap in the air ... learning to drive ... falling in love ... chasing her own babies on the beach ... climbing mountains ... running marathons ... swimming laps ... growing old ... every day ... doing every little thing she wants to do. 

Anything is possible. 

There she is. I can see her.

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.” 

Friday, January 31, 2014

Amazing and Cancer Free

The long awaited MRD (minimal residual disease) results are in and they are negative! No cancer cells were found anywhere in Phoebe's body or bone marrow and I am grateful, ecstatic and just so relieved.

Our next round of tests will be done in Memphis in 3 months and Phoebe will be finishing this year of maintenance chemo, sometime in April. I think it will be the beginning of April, but we don't have an exact date yet. This will hopefully mark the end of chemotherapy and cancer treatment for Phoebe forever, but as we are often reminded, we are in uncharted territory.  There is no data to look to for answers and no one who can tell us what may happen next. We believe that Phoebe will be okay, and that is enough for us right now.

Embracing all things hopeful and believing that all will remain right in our little world, I picked up Kindergarten registration forms for Phoebe today.

In other news, the voting for CTV's Amazing People has started. Phoebe is among these incredible and inspiring and simply amazing people and you can vote for her or for her friend, Bryce Jude, whose story is also featured, by clicking this link. I think you can vote everyday. The stories are amazing and well worth watching. We are very proud and honoured that Phoebe's story is among them and looking forward to taking her to her very first "Gala". She has her party dress and fancy shoes all picked out and tries them on at least once a day. Thank-you to CTV for sharing her story.

And thank-you to all of you for continuing to travel this road with us. 

Tuesday, January 28, 2014

Back from Memphis

We are back from a very busy trip to Memphis. This was Phoebe's second annual post transplant check up. It is hard to believe that it has been over two years since Phoebe's second transplant. Two years! In many ways, it feels like yesterday. I am often in complete awe of Phoebe and all that her little body has been through, and this visit was no exception.

On this trip, Phoebe had her regular every three month MRI to look for disease in her belly and pelvis, her bone marrow aspirate and lumbar puncture. In addition to these tests, she had an MRI of her heart and liver, an MRI to look for avascular necrosis, a CT scan to monitor bone density (a common side effect for children who have received steroids for treatment), an x-ray to determine her bone age, she had an eye exam, her hearing was checked, she saw the dentist (who despite my worries, she loved and even drew a picture for and insisted we deliver it the following day), she had her blood tested, her thyroid, kidney and heart function was monitored and lastly, she saw the hospital photographer.

This last visit really got to me. That St.Jude takes the time to photograph their patients each year, to have a real and honest portrayal of how they are doing, not just as numbers on a chart, blood levels and test results, but how they, as little growing, living, smiling children are doing, to capture their personality on that day, their spirit, it just warmed my heart. The photographs are done in a studio by one of the hospital's professional photographers. It took a second try to get Phoebe's photographs, but in them she is smiling big, saying cheese and I am just grateful to the hospital for acknowledging the importance of this moment and for recognizing Phoebe for more than just her cancer. I think it speaks volumes to the type of hospital that St.Jude is and to the fact that they often go out of their way to truly celebrate their patients.

As for our test results ... they are good. They are not all back yet, but what we have so far is good news. Phoebe's MRI shows no evidence of disease, her spinal fluid is clear, and the chimerism of her bone marrow is 100% donor 2 (still all my cells). We are just waiting for the MRD results. This is the most sensitive test and so really important. We have had a perfect chimerism with positive MRD before, so I am anxious to know the results.

In terms of all of the other tests, most are good. Phoebe's hearing and vision is perfect, her heart is functioning well, her kidneys, despite having one that has never fully recovered from the damage done by the mass, appear to be working well. She does seem to be suffering from hypothyroidism which is a common side effect for children who have received total body irradiation (which Phoebe has not), so we will be adding an endocrinologist to our list of doctors. The iron overload on Phoebe's liver is severe and requires treatment before it causes more problems, but treatment can't begin until we are finished with chemotherapy, so we will wait. This was caused by the countless blood and platelet transfusions that Phoebe required during treatment, transplant and after her relapse(s) to survive. To put in perspective, during her first transplant, Phoebe required daily and sometimes twice daily transfusions of blood and platelets to survive the first two months as her body recovered and without the blood she received after her first relapse, which was also every day or every other day for many months, she would not be here today. Her body just wasn't making any healthy cells, or anything except for the Leukemia cells, so without blood donors, she would not have survived. It's as simple as that and we are forever thankful to everyone out in the world who donates blood. Phoebe does now have a huge build up of iron on her liver and how this is typically treated is by phlebotomy -  essentially taking blood from Phoebe to draw the excess iron out of her system.

Had any of these issues occurred in my healthy child before Cancer struck, I would be scared, worried, heart broken. I would probably have cried and wondered what I did to cause this. Today, I am relieved. It is not cancer. My motto these days is anything but cancer, but as these issues start to add up and as we learn more about the devastating effects of these harsh treatments, I worry that this will change. There are many side effects of childhood cancer treatment that are as scary and life threatening, if not more so, than the big C. Right now, however, if these issues are treated they will not threaten Phoebe's life and so we are lucky and grateful and will continue to put one foot in front of the other, thankful to be moving forward and away from cancer.

Please keep Landon's family in your thoughts and prayers as they grieve the loss of their beautiful boy. Landon passed away early Sunday morning after fighting Leukemia for most of his life. We spent some time with Landon while Phoebe was in patient at CHEO and he literally lit up the ward with his energy and beautiful spirit. The joy he brought to everyone around him was contagious. Back then, there was a bright, red shiny tricycle on the ward, which has since gone, but I remember watching Landon race around the ward on this bike. He truly made our days there brighter. Rest in Peace, Landon.

We need a cure.

Monday, January 13, 2014

Phoebe, the Teacher

We are making our way through another 5 day course of steroids and Phoebe is not herself. She is clingy, she wants to eat everything and nothing all at the same time, she is moody and sleepy and we are all counting down the days until she is back to herself. It is especially hard on Mae and there are often a lot of tears during steroid week. This particular round seems to be worse than most and this morning Phoebe had a melt down that was unlike anything I have ever experienced. It was an all out, on the floor, kicking and screaming, refusing to put on clothes, and even throwing away her beloved soother, melt down. Later today, I overheard Mae telling her cousin that it would be "just a few more days before Phoebe is back to normal". Sigh .... 

Phoebe's blood work taken at CHEO last week looked great and we are coming up to our next trip to Memphis. We leave on the 21st for a few days and a lot of tests. We will see Phoebe's transplant doctor, the ophthalmologist, the dentist and Phoebe's heart, lungs, bones, hearing, teeth, eyes, blood, kidneys and liver will be checked in addition to the tests of her bone marrow, blood, spinal fluid and MRI of her belly and pelvis to check for disease. So many tests. Phoebe's days will start at 7am and finish at 5pm. Despite these long days and Phoebe's busy schedule, we have decided that we will all go to Memphis this time. The long days and hospital life is hard on Phoebe so we are trying to make the most of it. We have plans to squeeze in a ride on the Memphis trolley, a visit with the famous Peabody Ducks, and Phoebe has requested barbeque for dinner.  

It is also an important visit, both because it is our second annual post transplant visit where everything is tested and also because we will hopefully hear some news of when this chemotherapy plan that we are currently on will stop. We are coming up to a year post radiation and depending on which doctor we ask, this may also be when we will be ending this year of chemotherapy and steroids. So long to steroids and chemo may be just around the corner. 

So, why all of these tests at St.Jude? It is very common for children who have been treated for cancer to develop complications related to treatment. I read a study published by St.Jude recently that stated that 98% of survivors will develop some form of chronic long term side effects. 98%!  This statistic makes me want to scream. 68% of these side effects will be life threatening or disabling and some, fatal. It appears then that is not a quesiton of if, it is what. What chronic or possibly life threatening side effect will Phoebe be dealt? She has had a lot of aggressive therapy, so the likelihood of something happening is great. The journey, it seems, never ends for these kids. Not surprising though, given that the drugs used to treat childhood cancer are mostly 40 years old and meant for adults. Not at all meant for the developing bodies and minds of children. 

I dream of a day when pharmaceutical companies develop drugs for children just because it is the right thing to do. Drugs that will cure and allow children to grow up happy and healthy. Drugs that won't rob children of childhood due to short term side effects like the rages and mood swings of steroids, drugs that don't cause 98% of survivors a long term health concern. We are making progress, but still have a long way to go. 

We are thankful to be followed by St.Jude and also incredibly grateful for how well Phoebe is doing. I will take the steroids and the melt downs if they mean that she is here. She is growing into quite the hilarious and feisty little lady and she just amazes me. She is brave and fearless. Last week I took her swimming and she insisted on trying without her "puddle jumper" to help her stay afloat. She told me she wanted to "swim by herself" and marched towards the pool, down the steps, little arms and legs pumping and paddling she may have got in one stroke towards me before she dipped under and I caught her. I expected her to want to put her puddle jumper on right away but she shook it off and insisted on trying again and again, and did just that six times before choosing to float with help. When she was all dressed after her swim she proudly exclaimed that she would teach Mae to swim and "not to be scared". Love her. 

Go Phoebe go.