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.

Sunday, September 28, 2014

Panda to the rescue

We are on day 3 of a 4 day pulse of steroids. Phoebe woke up this morning crying out for her "big panda" - this is a stuffed panda that is sitting in her room at home in Ottawa. He is soft and often acts as a pillow for her when she is tired, not feeling well, and just needs to rest. He is a comfort. When I told her that he was in Ottawa, she cried and she cried and she screamed and screamed. She told all of us to leave her alone, that she hated us and it was heartbreaking to watch. Mae brought her every single stuffed animal that we have, only to have it thrown back at her in a rage. Phoebe was inconsolable and so we did the only thing we could do - Jon went to the zoo to buy the biggest stuffed panda they had and brought it home. 

Thankfully, it worked and Phoebe was so happy and even though her happiness was fleeting, it was worth it to see her smile. She smiled and she hugged Panda so tight. 

To continue this happiness, we decided to take a drive to a local nursery because both girls wanted to decorate a pumpkin. Phoebe has zero immunity, so we are really limited as to what we can do. We can decorate pumpkins and be outside in the fresh air, so off we went. Once there, Phoebe asked if we could also pick up some bamboo at the grocery store for her panda. I told her that the grocery store doesn't sell bamboo. This made her even angrier than not having her big panda did. She cried and screamed and cried some more and so, in desperation, we told her that we would look in the grocery store to make sure. We just wanted a few more minutes of happy. When we arrived at the grocery store and Jon went to run in, Phoebe lost it. She started screaming that she wanted to sit in the cart with her panda. "I just want to sit in the cart", she said. She can't sit in the cart or go in the store because she has no immune system right now, and risking her catching something is not something we ever want to do, so Jon ran in and I sat in the car with my screaming children. By this time, Mae was also upset. 

The grocery store in Memphis doesn't sell bamboo. To this, Phoebe continued screaming. "Panda needs bamboo!! Panda eats bamboo!!", so in desperation, we drove back to the zoo (or the neighbourhood around it) and Jon grabbed some that was growing wild at the side of the road. Who knew that bamboo grows wild in Memphis? Jon does. Phoebe and Mae were happy. Panda was happy and the peace and quiet lasted about 5 minutes. 

This is what is devastating about steroids - they change normally happy, loving and calm children into very different people. They steal their innocence. It makes me crazy to think that this is an "acceptable" form of treatment for children. Steroids cause Phoebe to scream, shout, cry, growl, rage. They turn our very happy girl into a depressed, sad, and quiet child. They cause her face and belly to swell, making her very uncomfortable. They upset her stomach. They cause her to say hateful and horrible things that she would not usually say. Things that we tell her are not kind, or nice, or acceptable. Then when they have run their course, they cause her to suffer withdrawl symptoms. And the short term side effects are only the beginning. 

We do this, over and over again, with the hope that it is what Phoebe needs. It is madness. 

A bright side to this, is that in the past, Phoebe has responded miraculously well to steroids. We hope for continued miracles and continued response. 

Phoebe has one more day of steroids and then we have a three day break. Last week, this break did not bring us back joyful Phoebe. There were glimpses, but in all honestly, she has been miserable. This week, we hope for relief and peace for our girl. We hope for relief and peace and a cure for sweet Phoebe. 

She deserves better than this. 

I know that lately, this blog has been quite heavy, hard to read, and sad. I can tell you that it is harder to write and even more so to live than it is to read and I long to write a joyful post. This our reality. I appreciate so much those of you who continue to read, share, pray and think of Phoebe. This means so much to us. We can feel the love and it helps us through. 

There is a light at the end of this dark tunnel and if anyone can find it, it is Phoebe Rose.

Panda accompanied us on all of our walks today - riding with Phoebe in her tiny umbrella stroller, or when she needed the space, he perched up on top. She has requested that he ride with her in one of the St.Jude wagons tomorrow, "so he'll be more comfortable". 

Wednesday, September 24, 2014

The little things

We are still taking things one day at a time here in Memphis. Phoebe has continued to struggle with the side effects of the leukemia cells breaking down, or tumor lysis syndrome. When cancerous cells break down they release all kinds of toxins into the bloodstream and without treatment and close monitoring, this can be very dangerous. In Phoebe's case, it has caused stress on her kidneys, high uric acid in her blood, and most of her electrolytes are either high or low; some at a critical level. She is on continuous fluid to protect her kidneys and flush everything out and we have seen some improvement today. That this is still happening, is a good thing, and today when I saw Phoebe's doctor, she was excited. She says that this is a sign that the treatment is working. 

It is hard to see Phoebe miserable and tired, and to know that we have caused this. It is easy to forget how awful cancer treatment can be and we have pushed a lot of the terrible to the backs of our minds. It is very difficult, but we are hopeful that at the end of all of this, we will hear that Phoebe is in remission and can once again focus on healing. 

We have had glimpses of Phoebe's beautiful spunk and today was a much better day than yesterday. More important than cancer treatment, Phoebe wrote her name for the first time today - or at least the first time with all of the letters in the right order. She also sat up with Mae at the lunch counter at St.Jude and made her very own pizza. She refused to wear the chef hat, but she ate most of the pizza and had a great time making it. It is baked in a wood fired oven, the sauce is homemade, the ingredients are fresh, and it costs about 2 dollars. A lot of effort and pride go into caring for families and patients at St.Jude. It is everywhere. From the homemade chicken noodle soup in the cafeteria, to involving kids in food preparation and nutrition, to the beautiful murals that cover every wall in the hospital and the patient's artwork that is proudly displayed throughout clinics and hallways. The children are celebrated and honoured and moments are cherished. Everyone is here for treatment, but there is a great effort to make memories above and beyond cancer. It is the little things that together make St.Jude a beautiful place. To be in a hospital that cares about Phoebe as a little person who is so much more than the make up of her leukemia cells, is a beautiful thing and something that I am continually grateful for. Today we were overheard talking about Phoebe's lost monkey and within moments, an announcement was made on the hospital's overhead system about it. We never did find the monkey but it brought a huge smile to Phoebe and Mae's face to hear Miss Penny call out for detectives to help find him. 

We miss home and wish we were tucking our healthy kids into bed each night and taking them to school each day, but in the absence of that normal, St.Jude helps us to make the most of what we have. 

It is the little things. 

We are back at the hospital on Friday for blood work and a visit with Phoebe's doctor. We also restart steroids and the study drugs on Friday. We are halfway there. 

Thank-you to everyone at home who has been thinking of Phoebe and our family and helping us through this. Car washes, garage sales, bottle drives, a dinner, birthday parties, a golf tournament, a BBQ, and 50/50 draws were held or are in the works in Phoebe's honour. You have allowed us to travel this road together and to be by Phoebe's side and together as a family during this very uncertain and difficult time. We are forever grateful to be able to do this. Time is precious and it is a gift to be able to spend it together. I also don't know what Phoebe would do without her best friend Mae to hold her hand. 

From the bottom of our hearts, thank- you. 

Friday, September 19, 2014

Go Phoebe go

All things considered ... Phoebe is doing well. Thankfully, she is much better than she was last week. She has been playing and improving over the past few days and it is so nice to see her smile and be happy. She is a regular in the hospital playrooms and eager to join in on the craft activities that are held often at St.Jude. 

Her blood work looks okay. She is now completely neutropenic, which is expected, and her kidneys are working hard, but we hope the worst of this is behind us. It has been a difficult week, but all things considered, we are doing well and grateful to be here. 

When we arrived at St.Jude last week, Phoebe's leukemia had spilled into her blood. She had only about 3% leukemic blasts in the blood but had we tried to go home before coming here, we may not have made it. Since starting treatment, the blasts are now gone and we hope they never return. 

We were and are in shock and are still coming to terms with this relapse and our reality. It is often very easy to forget that Phoebe is so sick as she is usually and honestly a picture of health. When we are at the hospital with both Mae and Phoebe, people who meet us for the first time often ask, "which one has had two transplants?" - Phoebe's ability to thrive despite all that she is going through is amazing, but as we give her more challenges we worry constantly that this will prove to be too much. When she is tired and needs to rest, as she has had to lately, we worry that she won't recover. This is our reality. 

We are so happy to see her smile return, to see the bounce in her step, and to witness the pure joy that she brings, and we are taking things as they come, one day at a time. 

We have the weekend off from the hospital and will be staying home. The good news is that we decided to rent an apartment close to the hospital as the hospital apartment housing is full so we now have a home to go to. Life without a kitchen is hard especially when Phoebe loves to eat and we are careful about what we give her. We have tried to recreate a "home" away from home to make things easier for Mae and Phoebe and we are all happy to be a bit more settled. 

Phoebe started steroids and one of the study drugs again on Friday and she will receive them both for the next four days. In the past they have made her tired, sad and depressed. 

One day at a time. 

Go Phoebe go. 

"J is for Joy" - the ABC wall at St.Jude

Monday, September 15, 2014

Day 4

I have been struggling with what to write and I have started and stopped this blog post so many times.   I am exhausted and worried and cancer is wearing me down. It is also wearing Phoebe down which is so very difficult to see. 

Phoebe is tired and not herself. She is sleeping more and eating less. She is sad and depressed, thanks to the steroids, and it is so hard to watch her struggle. She slept and rested most of today and when she was up she wanted to be walked around in the stroller or wagon. The little girl that spends most of her days running around, did not walk a single step today.

We have been able to avoid any aggressive treatment for quite some time that being here and watching Phoebe fight this terrible disease again is so hard. Phoebe bounced back and was in remission so quickly after her second relapse, it was like it never happened. The treatment was so gentle during our year of maintenance that we were able to live a "normal" life, but this is not like that at all. This treatment is hard on Phoebe and we are only on day 4 of 36. 

We made it to Memphis on Thursday and Phoebe started treatment on Friday. Since we have been here, Phoebe has had a bone marrow aspiration, lumbar puncture, and MRI - all checking for disease. Thankfully, there is no disease in Phoebe's spinal fluid and no sign of a mass on the MRI - this is good news, but there is still a lot of disease in Phoebe's bone marrow. 

The disease in the bone marrow is about 78% and it seems that we are now dealing with both ALL and AML - Phoebe's doctor explained that it is not uncommon for MLL + leukemia to switch type or have characteristics of both types of leukemia and Phoebe has had some suspicious AML cells in the past. The chemo Phoebe is receiving targets both ALL and AML so being here and on this treatment is what Phoebe needs, but it is still terrifying. 

When Phoebe was diagnosed in 2010 and we watched her fight through months of treatment and then transplant, I thought we had seen the worst. I couldn't imagine feeling anymore pain, worry or heartache, but then Phoebe relapsed and the worry and fear that we felt before the relapse was nothing in comparison to hearing we had no options and should take Phoebe home. We found options and hope and what we felt most was relief. We would get another chance. We watched Phoebe suffer and fight through a second transplant, stays in the ICU, infections, nausea, and incredible pain and it was so difficult but it gave Phoebe a chance at life. We believed and hoped that she would be cured and her doctors did too. Everything looked perfect. Phoebe was healthy. We were beginning to heal as a family and we had a year without cancer. 

With the second relapse, we worried that we would lose Phoebe. Whatever fear and worry we felt before was nothing. We watched as the mass in Phoebe's belly grew before our eyes and we were helpless. Completely helpless. Phoebe pulled through and we once again began to believe in our miracle. That anything is possible. We began to hope for a future without cancer. Phoebe was growing and thriving and we started to dream about her starting school with her big sister. We had 16 beautiful months without cancer and we enjoyed every one. 

Then Phoebe relapsed for a third time. There are no words to describe the fear and the worry that we feel each day. It is unlike anything we have felt before. The conversations we have with doctors now mainly focus on giving us more time instead of the cure that we are so desperate for. There is hope and no one is giving up, but this is so very hard. We hope and pray that this is the answer for Phoebe. We continue to believe in our miracle. We just love her so much. 

Tuesday, September 9, 2014

The hospital of hope

We have the final bone marrow results and it seems that there is still about 60% disease in Phoebe's bone marrow. After considering many things and doing a lot of talking and listening, we have decided not to continue another cycle of the trial and instead move on to something else. 

In the patients who have responded to the treatment, the researchers have seen maturation of the leukemia cells, it seems that the cells mature and then stop producing, but in Phoebe's case, they unfortunately see much of the same immature MLL+ leukemia cells. We had a lot of hope resting in this treatment, we fought hard to be able to receive it, and I wouldn't change a thing. It is promising, we gave it a chance, and it wasn't meant to be. It is still a drug that is being developed and researched with the goal of improving survival rates for this awful leukemia and I am grateful it exists. It isn't the answer for us, but I hope it can still be an answer. Despite this, what remains an incredibly unfortunate and sad reality for us at almost every turn in this journey is that the research is not moving fast enough for Phoebe. It is keeping us afloat, and we will take this and are so grateful to be able to tuck Phoebe into bed each night, but we need a cure. 

We are moving on and moving forward and doing what we can to put one foot in front of the other. We are sad that this was not what we had hoped for and we are tired, but we still have options and we still have hope. I often think of the words of one wise and brave mom when we come to points like this. She said, "if we still had options, we would still be fighting". And so, on we will travel.

We are leaving for St.Jude on Thursday. The hospital of hope. There is a trial there that has seen success in MLL + leukemia patients with a doctor whose focus is MLL + leukemia and we can start right away. These drugs and this trial are not available in Canada and will not be available anytime soon, or possibly ever. There is another promising immunotherapy trial that has been suggested which is also not available in Canada ... and I can assure you that we are not the only Canadian family looking for options like these. We are so thankful for St.Jude and to have been able to receive treatment in Denver, but we need these treatments in Canada. 

Despite all of this excitement, after a blood transfusion today (thank-you blood donors), Phoebe seems as good as new. Her blood work without the transfusions is not the greatest, but we hope that things remain under control until we can start something new. Mae and Phoebe are both happy to be going back to St.Jude and in many ways it is like home - a home we hoped we would never need but are so grateful it is there. 

Tomorrow we are at the hospital to disconnect the last of the study drug and to say good bye to the backpack that has been like an extra limb for the past 28 days, and then we will hurry to make plans to get out of town. 

Monday, September 8, 2014

We will know more tomorrow ...

Over the past two weeks, Phoebe's blood counts have been slowly dropping. Not consistently, some days they are up and some days they are down, but they have been down more than up and it is definitely a cause for concern, and worry, and stress. Today we arrived at the hospital certain we would see some recovery - Phoebe spent the weekend running and playing. We noticed that she started to carry her backpack on her back again, instead of dragging it behind her as she has been lately. She wanted to swing at the park - we took this as a sign that she wasn't feeling dizzy due to low hemoglobin. We watched her run fast after Mae, her backpack on, her little legs looking like they might let her take off in flight. We listened to her sweet laugh and we soaked it all in, certain that we would see a rise in her blood work. 

This morning, Phoebe's hemoglobin and platelets were at an all time low. She received a platelet transfusion and will most likely get blood tomorrow. Phoebe hasn't needed a blood or platelet transfusion in over two years. These results are very difficult to take. 

Phoebe also had a long awaited bone marrow aspiration today. We have now been on this study drug for one full 28 day cycle. When we began the study, Phoebe had about 60% disease in her bone marrow. We don't have enough results to have a definite answer, but when the doctors were able to "glimpse" Phoebe's bone marrow under the microscope at the end of the day, they saw blasts. Blasts can mean leukemia but in a perfect world they can also mean recovering cells. Today, they saw about 60% blasts in Phoebe's bone marrow. I am hopeful and I am an optimist, but the chance that all of those are recovering cells, I would think, is extremely unlikely. Not impossible, but unlikely. 

We will know more tomorrow. 

Right now we know very little. We know that despite what Phoebe looks like on paper, she is still feisty and full of energy and spunk. We know that Phoebe has been on this experimental drug for a month and that while this drug may not have moved us further ahead in our search for a cure, it has not moved us any farther behind. It has given us time and without it I am certain that we would be seeing much more than 60% blasts. If we do in fact have 60% leukemic blasts, well, we have no more than what we started with and the time we have spent in Denver although it has been incredibly stressful, has also brought us joy and beauty and peace. 

We have climbed to the top of mountains to see views that have literally taken our breath away, we have walked through red rocks to see ancient fossils of dinosaur footprints, we have gone for long walks in search of bunnies and new parks, we have seen things we would never have seen at home and we have made the most of our time here. 

We will know more tomorrow.

Thank-you, to all of you, for continuing on this journey with us, please keep our sweet and feisty Phoebe in your prayers.