Small Victories

Little by little, we are making our way through. 

Phoebe's MRI is clear. Good news. Phoebe's belly and pelvis were where she relapsed the second time, but this time, this area remains cancer free. A small victory. 

Phoebe's blood work remains good and normal. No evidence of the storm that is thought to be raging in her bone marrow. I am holding on to hope that it will not rage, but rather remain controlled, but life with this leukemia tells me that it is probably only a matter of time before we start to see signs. It is not kind or gentle. We will take this good news though and run with it as far as it will take us. And then we will run some more. 

We are looking into a clinical trial that right now is only available in NY - it is for a promising new drug that actually targets MLL+ leukemia, which is what Phoebe has. It is the first of its kind and if we are able to get it, Phoebe may be the first child to receive it. It is the first drug developed, but not yet approved, that aims to target the MLL gene - amazing and depressing all at the same time. 

What makes this complicated is that the treatment in New York would cost us every single thing we currently own and then some. It is not likely to be covered by our provincial health insurance because it is experimental and part of a research study. Never mind that it has shown success, has no side effects, specifically targets a rare leukemia that currently has a very low survival rate, could very well help Phoebe, and is one of our only options. It is expensive and innovative, so most likely not covered. Our doctors are expecting a refusal letter from OHIP. The lack of support for pediatric cancer research and children fighting cancer is simply not enough. It is infuriating and we need to do better.

Our next step is to wait for this letter of refusal and then to wait for this treatment to come to Canada. Phoebe's doctor at SickKids is hopeful and confident that it will make it there sooner rather than later, and we hope to have more answers and a plan that will start Phoebe, once again, on a path towards complete healing, soon.

In the meantime, we are enjoying every moment that Phoebe is well and supporting her in every way we can. She spends her days running and playing and I often watch her in amazement, wondering how can this be possible? I am honestly still in shock that this is actually happening. 

"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." Shel Silverstein 

Anything is possible - even the very good things.

Go Phoebe go. 

Again

We received terrible news today. Phoebe's leukemia is back for a third time and I feel like screaming. It is in her bone marrow and we are terrified. There isn't any way to fully explain just how devastating this is and there is not a word big enough or ugly enough to describe how we feel. Devastated doesn't do this justice. 

Life can change in an instant. Please remember this and don't take it for granted. Don't complain about the weather and the traffic, don't complain about growing older. Don't sweat the small stuff. Hug your kids and your friends and your family. Let them know that they are loved. Be thankful. 

We are not giving up. In fact, when I arrived at CHEO this morning, although we were still waiting for results and I was in complete denial that this was actually happening, Phoebe's doctor had already been talking and emailing with her doctors at SickKids and St.Jude and they are once again putting their heads together and looking into options and trials. Trying to find something to help. Trying to find us some hope. The amount of disease in Phoebe's bone marrow is relatively low, it is 14%, and today's tests showed no leukemia in her spinal fluid, so that is one tiny piece of good news. Phoebe also has no symptoms and her blood work is normal, so we have some time. It is not like it has been with previous relapses where we have been racing against time, we are still racing and we need to do something soon, whatever that may be, but we have more time. 

Our fearless leader, Phoebe, is as feisty as ever and it is so hard to believe that she is anything but healthy. She is as joyful and full of life as always and we love her so much. We will continue to follow her lead and we will never stop believing that she will be cured. We have been knocked down, there is no question about that, and we are exhausted and weary, but as long as there are options, we will keep trying. 

Despite the hope that we continue to cling to, what I feel the most right now is frustration. I am frustrated and angry at the world and I have so many thoughts running through my head. Before Phoebe was diagnosed, the thought that one of my children would have cancer was completely foreign to me. It never crossed my mind. Not once. It would never happen to us because I am healthy and I am careful and I don't do any of those "things" that cause cancer. We eat organic, I am a vegetarian, we exercise, avoid chemicals, we don't eat fast food, I read labels obsessively and avoid anything I can't pronounce, we mostly cook from scratch, and I am careful to the point of being paranoid, yet my baby was born with cancer. I feel like I need to explain and defend myself sometimes as we are inundated with information on the internet that tells us that cancer is caused by things that we have done or eaten, that it is a result of a nutritional deficiency, or because we are not happy and positive. I believe that what we eat and how we live is so important, but it is not so simple, especially with children. I look at my Phoebe, who is happier to eat lentil soup and kale salad than candy, Phoebe who happily drinks down her curcumin juice, and I feel like screaming. We did what we were supposed to do, and this still happened to us.  

So, here we are almost 4 years later and we are no further ahead. Yes, there are some trials and options but they are few and none are in Canada. Canada has one single hospital running phase 1 clinical trials, Canada directs only 3% of federal research funding to children's cancer, and somehow, this is thought to be okay. It is not okay. These kids who are participating in trials, sacrificing their bodies, their lives, all while clinging to hope for a cure, no matter how small, and their families and friends and doctors who are shaving their heads and running marathons to raise money; they are who is forwarding research. For Canadian children, the options are very few at home and our government will not cover the cost of "experimental treatment" for the few more options in the US, despite how promising they may be, so kids are dying. Canada is behind, and the research is not moving fast enough for Phoebe. This reality is terrifying. 

Next week, despite all that is going on, Jon is determined to go to Toronto to shave his head as part of the Great Big C17 Head Shave. Also shaving his head at this event is Phoebe's Dr.Whitlock, who is also the chief of oncology at SickKids and chair of C17 and one of the doctors that has been working hard to find us some hope - he is a very busy man, yet he is raising money for childhood cancer research and shaving his head. Many of the other people joining him are also pediatric oncologists. Phoebe's doctor at CHEO, who is also chief of oncology and extremely busy, runs a 100km relay each year to raise money for childhood cancer research. What does it say, when the people responsible for treating children with cancer and researching better treatments and cures are also the people raising money to support the very research they need to move forward? I think it is very telling of the lack of support and the lack of money given to children's cancer research by our government and the need to do more. It also speaks to the dedication of these wonderful doctors and people. We need to fill the gap, so that our doctors can focus on saving children, rather than advocating for more funding. We need to do more because it is the right thing to do. 

We will know more tomorrow and hopefully have a plan. In the meantime, we will continue to hold Phoebe tight, to tell her that she is loved and to surround her with hope. Her big sister Mae knows something is wrong, she is holding her Phoebe and asking many questions, but we haven't told either of them yet. We are taking things one day at a time. Thank-you for reading this and caring for our sweet Phoebe Rose - we need prayers and postive thoughts now more than ever. 

Phoebe is good. She has a runny nose and is recovering from a cold, but she is good. Spring is finally here and she loves playing outside, getting dirty, riding her tricycle, and "gardening ". Watching her joyfully discover new things, is the best. She talks often about school and how she will be starting soon with Mae. It is amazing, how far she has come. 

May 27th is the date for Phoebe's bone marrow test - the sample of bone marrow will then be sent to St.Jude for chimerism and MRD testing. It is so hard not to worry, but we try. This test will tell us if the last 99% chimerism was in fact a mistake and we need this to be so. 

On June 4th, Phoebe's dad, her grandpa and a friend are shaving their heads to raise money for childhood cancer research as part of the C17 Great, Big Head Shave. C17 represents the 17 pediatric oncology centers across Canada and the money raised will support childhood cancer research in Canada. We need research to keep moving forward, it is why Phoebe is here, it is important, and it is drastically underfunded. Please help fill the gap, help improve the lives of children with cancer by supporting research that aims to find cures and less invasive and more targeted treatments for childhood cancers. Help kids like Phoebe grow up healthy and happy. 

We are looking for team members and donations. If you are interested in supporting team Phoebe Rose Rocks with a donation or joining as a "shavee", please click this link. Thank-you! 

http://www.stbaldricks.org/teams/mypage/94704/2014

Noisy and hopeful

We have the results of Phoebe's bone marrow tests and they are a bit complicated.

The minimal residual disease test, that looks for leukemia at a very low level, is negative. This is good news. What makes it complicated is that the chimerism test, that looks at the DNA of the cells came back at 99% donor 2 (my cells), 1% noise/lab error/possibly Phoebe's cells. 

The chimerism test is not as sensitive as the MRD test so it doesn't make a lot of sense for it to be positive when the MRD is negative. Because of this, the doctors at St.Jude think it is a mistake but they can't completely rule out the result as some of this background noise lines up with Phoebe's genetic markers. 

So we will test again in 6 weeks rather than 3 months.

Phoebe's doctor explained that some of Phoebe's bone, blood or fat cells could have contaminated the sample but that this is unlikely as it would require a lot of these cells. 1 in 100 (1%) of the cells showed up as this background noise. 

He also explained that it is extremely unlikely that any of Phoebe's non-leukemia healthy cells could have survived all that her body has been through, so to have any of Phoebe's markers show up is worrisome because the only cells of Phoebe's likely to survive are the ones we don't want.  

The MRD test is negative for leukemia though which is reassuring, so rather than focus on the what ifs and what could be, I will focus on that. There will always be worries with Phoebe but after looking at hundreds of thousands of cells, no leukemia was found. None. The rest, this noise, it is just a mistake. 

It is exhausting though, this journey. It is exhausting in ways that I cannot properly explain. We function every day with what has become manageable stress. For us, this stress is normal. It is an always there, manageable because we have felt it for so long, stress, and as long as nothing else happens, we can handle it. 

We try to focus on the positive, and I think we do a good job of this. It is hard to be anything but positive with Phoebe around. She is the most joyful soul. 

But sometimes my mind wanders and races to thoughts of what if and the stress becomes too much. I can't help it. Reality sets in. Phoebe has had so much treatment. We need this to work. We need this to be a lab error. We are running out of options.  And on and on it goes until I force these thoughts out of my mind and imagine a beautiful grown up and feisty Phoebe. She is amazing. 

Infant Leukemia is a monster. When diagnosed within the first few months of life, it carries, at best, a 30% chance of survival. We were told 10-15%. There is no known cure for post transplant relapsed infant leukemia and very few survivors. There have been ZERO advances in treatment or survival rates for this disease in 15 years. We are simply grasping at straws.

None of this is okay. Phoebe's joy and spirit and strong as anything will to live keeps me sane, as does Mae and my belief that Phoebe will be okay, but what nearly breaks me is the lack of attention paid to treat and cure cancers like Phoebe's. The lack of options. We deserve better than leftover adult chemotherapies and pennies. We deserve a real chance. 

Please keep Phoebe in your thoughts and prayers. She is amazing and cancer free and this worry and noise will soon be behind us. 

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 a long 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 this news 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 ... 

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 

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.