We made it to Sick Kids. We drove to Toronto together which was nice as it was time that we were able to spend together as a family of four outside of the hospital. We arrived at Sick Kids late Sunday night, checked Phoebe in and she was soon settled down to sleep. This morning we were woken up early by our doctor and it was non-stop action all day long. Phoebe received the first dose of the trial drug at 5 o'clock. Her room was busy with many nurses and her doctor coming in to check on her, monitor for side effects and check her vital signs every 15 minutes. Everything went very well. Phoebe woke up part way through the infusion, and wanted to play. She was happy, excited and joyful. She sat up in her crib and waved at the many people that came in to see her.
Today was a good day. I feel like we are finally back on the road to recovery. There are still many uncertainties, but we are where we need to be to help Phoebe get better, and we are making progress. Phoebe will receive this new drug 3 times a week for 2 weeks. She will be closely monitored and her blood will be tested every day. Because the drug is designed to target Phoebe's Leukemia cells only, our doctor thinks that by the end of this week we should have an idea of whether it is effective or not. If it is working, we will continue on this path, if not we will move on to standard chemotherapy. Either way, we believe that Phoebe will get back in to remission.
There was a lot of hope in Phoebe's little room today. Our hope for a cure for Phoebe's cancer was made stronger by the hope of her many nurses and doctors. Many people lingered in her room, watching her play and marvelling at just how happy she is. Through all of the blood pressure monitoring, the listening to her heart and chest, the countless temperatures ... as long as Jon and I were close by, she played and she laughed and she smiled. In her own way she was telling us that yes ... every little thing gonna be all right.
Monday, August 29, 2011
Saturday, August 27, 2011
Back to CHEO
Yesterday Phoebe's white blood cell count was 34, it is still under 50 so she is still eligible for the clinical trial. Good news. When we left CHEO in the late afternoon we were expecting it to be our last visit for a long time. Phoebe had other plans. Late in the evening she spiked a fever, and when her temperature didn't appear to be coming down on its own, we packed her up in the car and headed to the emergency department of CHEO. Because of her relapse and recent bone marrow transplant, her immune system is non-existent so a fever is taken very seriously. We were quickly ushered in to an isolation room, blood was taken, an x-ray was ordered, and Phoebe was once again hooked up to countless wires and tubes to monitor her blood pressure, oxygen and hydration. We saw 3 doctors and answered a thousand questions. Much of it felt like it did in the beginning, but at times the questioning seemed to be less about Phoebe and more for the sake of satisfying curiosity. I told and re-told stories of my uneventful and healthy pregnancy and delivery, Phoebe's first few weeks in the world, her diagnosis, her treatment ... how she is doing today both physically and developmentally all while holding an exhausted baby in my arms - after the 3rd and final doctor left I was fighting back tears and wondering how all of these questions really relate to Phoebe's fever.
Finally at 4 o'clock in the morning, we were brought up to our room on 4 north which ironically, is the same room that Phoebe was brought to 10 months ago after she was diagnosed. Her temperature had come down with tylenol and she was started on broad spectrum antibiotics just in case she has an infection brewing. She didn't mind being back in the hospital crib and settled down to sleep, grateful I am sure that no one woke her up to poke her or look in her ears.
We spoke with our doctor this morning and were told that as long as Phoebe's blood cultures come back negative (without any signs of infection), we will be going to Toronto tomorrow. Everything seems to still be on schedule to start the clinical trial and the doctors in Toronto are aware of this latest situation. The past 5 weeks have been some of the longest weeks of our lives; full of worry and anxiety, but also of hope. We have been clinging to the hope that we see in this clinical trial with everything we have, and we are so anxious to get started.
Finally at 4 o'clock in the morning, we were brought up to our room on 4 north which ironically, is the same room that Phoebe was brought to 10 months ago after she was diagnosed. Her temperature had come down with tylenol and she was started on broad spectrum antibiotics just in case she has an infection brewing. She didn't mind being back in the hospital crib and settled down to sleep, grateful I am sure that no one woke her up to poke her or look in her ears.
We spoke with our doctor this morning and were told that as long as Phoebe's blood cultures come back negative (without any signs of infection), we will be going to Toronto tomorrow. Everything seems to still be on schedule to start the clinical trial and the doctors in Toronto are aware of this latest situation. The past 5 weeks have been some of the longest weeks of our lives; full of worry and anxiety, but also of hope. We have been clinging to the hope that we see in this clinical trial with everything we have, and we are so anxious to get started.
Thursday, August 25, 2011
One mission accomplished ...
Mission accomplished. Jon successfully picked up the box this morning, dropped it off at CHEO - the vials were filled with Phoebe's blood and as far as we know they were sent off to their destination in the States for further testing. As for Phoebe, she had a very busy day today. CHEO arranged for her to have her bone marrow aspiration and lumbar puncture with intrathecal chemo, which I know meant late night phone calls and emails between doctors in addition to reorganizing their already busy schedule and squeezing her in between procedures. We appreciate all of their hard and extra work. Both procedures went well. Her lumbar puncture showed that her central nervous system is free of Leukemia. This is important as when she was initially diagnosed, the disease was also there. Her bone marrow on the other hand, is full of Leukemia cells. Our doctor told us that 80% of the cells are blasts, or leukemia cells, leaving 20% healthy cells. This news, considering how long it has been since her relapse and the aggressive nature of her disease, was expected but still not easy to hear. However, the fact that she does have a significant amount of disease in her bone marrow means that she is eligible for the trial so in a strange and unfortunate way it is good news. The treatment and goal of remission is also still the same, regardless of the number of blast cells.
Now all of the obstacles that were within our control - making sure the box was picked up and that the blood got to its destination, having the bone marrow test done on time, and reorganizing schedules to make sure that other tests can be completed, have all been overcome. The one major obstacle that still remains is Phoebe's white blood cell count. Today it climbed to 43. It has to stay under 50 for her to remain eligible for the trial. She is having it tested again tomorrow morning and those results will be what Sick Kids bases her eligibility on. After tomorrow if it is below 50 it won't be tested again, she will be enrolled in the study and will start treatment on Monday. The hope is that the mild chemotherapy will continue to keep it under control - and that tomorrow we can start to look forward and to focus our hopes and energy on getting Phoebe back into remission.
Now all of the obstacles that were within our control - making sure the box was picked up and that the blood got to its destination, having the bone marrow test done on time, and reorganizing schedules to make sure that other tests can be completed, have all been overcome. The one major obstacle that still remains is Phoebe's white blood cell count. Today it climbed to 43. It has to stay under 50 for her to remain eligible for the trial. She is having it tested again tomorrow morning and those results will be what Sick Kids bases her eligibility on. After tomorrow if it is below 50 it won't be tested again, she will be enrolled in the study and will start treatment on Monday. The hope is that the mild chemotherapy will continue to keep it under control - and that tomorrow we can start to look forward and to focus our hopes and energy on getting Phoebe back into remission.
Wednesday, August 24, 2011
Non-stop action
As usual, I am amazed at how quickly things can change from one day to the next. The one remaining spot in the clinical trial at Sick Kids, for the treatment that could very possibly put Phoebe back into remission, has opened up. We are going back to Toronto. Phoebe has to have some more testing done to make sure that she is definitely eligible for the trial, but if all of that goes well, she will be starting treatment on Monday. Finally some good news.
Our doctor at Sick Kids, who will also be following Phoebe's progress while she is enrolled in the trial, in addition to being a brilliant doctor, is also a very special person. He shares our hope and our belief that there is a chance, although it may be small, that a cure can be found. Today when I spoke with him on the phone, he told me that he is a hopeful person, that he has to be in order to do what he does, but that he also realizes that right now the odds are very much stacked up against Phoebe. Does that mean that we shouldn't try? Definitely not - he agrees that Phoebe's journey and her fight, is far from being over.
When Phoebe was initially diagnosed, we were handed a "road map". This was her protocol and schedule of treatment, and over the course of treatment, everything on these sheets of paper, whether it was anti-nausea drugs, chemotherapy, or scheduled rest, was given. Today, because Phoebe relapsed so soon after her transplant - we are in somewhat uncharted territory. There is no road map and no real plan of action. We are hopefully starting this treatment, and this treatment will hopefully lead us to remission. It is agreed that this clinical trial is not meant to be curative therapy, only therapy that will lead us to a curative therapy. When I asked our doctor today what the next step is, he said - keep asking me that question and eventually I will give you the answer. He is looking at other clinical trials, speaking with the transplant physicians and I am imagining a wonderful plan beginning to take shape.
Tonight in our house, it was non-stop action. At 7 o'clock our doctor from Sick Kids phoned to tell me about some "twists" that had developed in Phoebe's case. He explained that Sick Kids wasn't able to accommodate Phoebe for a bone marrow test, something that is necessary for eligibility, until Tuesday - pushing her start date to Wednesday and perhaps later. Because Phoebe's white blood cell count has been climbing and was 26 yesterday, we both agreed that waiting that long was not really an option if it could be avoided. Thankfully he had an interesting plan of action to help to give Phoebe the best chance at getting this spot in the trial. He explained that Phoebe's blood and bone marrow can be taken at CHEO ... good, but then he explained that the "box" containing all of the vials that her blood must be put in to before it is sent off to Maryland and the National Cancer Institute (by 3 o'clock tomorrow afternoon), is at Sick Kids. This, we decided, is a bit of a problem. To make a long story short ... tonight, at 11 o'clock, plans have been made and Jon is booked on an early morning flight to Toronto (this thanks in part to our concerned oncologist at CHEO, who worried about his safety after hearing warnings of a very large and impending storm and convinced him not to drive). His mission is to pick up the "box", head back to the airport, board another flight and return to CHEO - all in time for Phoebe's precious blood to be taken, the vials to be filled and the blood and box to finally be couriered to Maryland to guarantee Phoebe the spot in the trial.
We are hoping that all of this hard work will pay off and that Phoebe's bone marrow and blood tests will allow her to start this treatment on Monday. We are happy to do our part to help to make this clinical trial a reality for Phoebe, and we are anxious to get onto a path that will hopefully lead us to remission.
Our doctor at Sick Kids, who will also be following Phoebe's progress while she is enrolled in the trial, in addition to being a brilliant doctor, is also a very special person. He shares our hope and our belief that there is a chance, although it may be small, that a cure can be found. Today when I spoke with him on the phone, he told me that he is a hopeful person, that he has to be in order to do what he does, but that he also realizes that right now the odds are very much stacked up against Phoebe. Does that mean that we shouldn't try? Definitely not - he agrees that Phoebe's journey and her fight, is far from being over.
When Phoebe was initially diagnosed, we were handed a "road map". This was her protocol and schedule of treatment, and over the course of treatment, everything on these sheets of paper, whether it was anti-nausea drugs, chemotherapy, or scheduled rest, was given. Today, because Phoebe relapsed so soon after her transplant - we are in somewhat uncharted territory. There is no road map and no real plan of action. We are hopefully starting this treatment, and this treatment will hopefully lead us to remission. It is agreed that this clinical trial is not meant to be curative therapy, only therapy that will lead us to a curative therapy. When I asked our doctor today what the next step is, he said - keep asking me that question and eventually I will give you the answer. He is looking at other clinical trials, speaking with the transplant physicians and I am imagining a wonderful plan beginning to take shape.
Tonight in our house, it was non-stop action. At 7 o'clock our doctor from Sick Kids phoned to tell me about some "twists" that had developed in Phoebe's case. He explained that Sick Kids wasn't able to accommodate Phoebe for a bone marrow test, something that is necessary for eligibility, until Tuesday - pushing her start date to Wednesday and perhaps later. Because Phoebe's white blood cell count has been climbing and was 26 yesterday, we both agreed that waiting that long was not really an option if it could be avoided. Thankfully he had an interesting plan of action to help to give Phoebe the best chance at getting this spot in the trial. He explained that Phoebe's blood and bone marrow can be taken at CHEO ... good, but then he explained that the "box" containing all of the vials that her blood must be put in to before it is sent off to Maryland and the National Cancer Institute (by 3 o'clock tomorrow afternoon), is at Sick Kids. This, we decided, is a bit of a problem. To make a long story short ... tonight, at 11 o'clock, plans have been made and Jon is booked on an early morning flight to Toronto (this thanks in part to our concerned oncologist at CHEO, who worried about his safety after hearing warnings of a very large and impending storm and convinced him not to drive). His mission is to pick up the "box", head back to the airport, board another flight and return to CHEO - all in time for Phoebe's precious blood to be taken, the vials to be filled and the blood and box to finally be couriered to Maryland to guarantee Phoebe the spot in the trial.
We are hoping that all of this hard work will pay off and that Phoebe's bone marrow and blood tests will allow her to start this treatment on Monday. We are happy to do our part to help to make this clinical trial a reality for Phoebe, and we are anxious to get onto a path that will hopefully lead us to remission.
Monday, August 22, 2011
Taking the long road
We will know for certain on Wednesday, but as of today, there are no longer any spots left for Phoebe in the clinical trial. This decision was based on which patient was ready to start the earliest, and that unfortunately, isn't Phoebe. So now we do what we have become very good at. We wait. We will wait to hear more news on Wednesday, to discuss more options, and possibly wait for another clinical trial. We desperately want to start treatment, to have a better idea of what our next steps are and to help Phoebe. Many things - our sanity, Phoebe's health and our plans for the future are being held together by very, very thin and precarious threads. At times it feels like the happiness that we have come to know - the happiness that comes with being together at home as a family of four, may be snatched away at any moment.
And then there is Phoebe ... it would seem that no one has told her that the cancer is back. She is thriving, growing, laughing and smiling. She is even getting teeth. Two new teeth finally poked through yesterday. Her white cell count was 17 today, so it is on its way down again. In addition to this, today was our first clinic visit in over 3 weeks that Phoebe didn't receive any blood transfusions. She will probably need one tomorrow, but we were very happy to be sent home early from the clinic today. All of this being said, the fact that she has a raging, unpredictable and aggressive cancer inside of her is never far from our minds. We have no idea what it will do, how long it will stay hidden, or where it will go and that scares me to death.
And so we are taking the long road. There is a beautiful little town in Scotland, where my mother was born and where many of my family live today. It is called Rothesay and is on the Isle of Bute. To get there (and you should go) you can choose to take the short road from Glasgow to Wemyss Bay and then a large ferry that takes you directly in to town, or you can take the long road. The long road stretches along the shores of Loch Lomond, is full of curves and hills and it takes you to a tiny ferry that leads you to the edge of town. As a child I loved taking the long road. The winding road, the tiny ferry. It was wonderful. And although it took forever and often had its share of obstacles - mostly of the farming variety, it eventually led us to our chosen destination. I mention this because today when I was thinking about Phoebe's road to recovery and her many many obstacles, I simply thought - well, I guess we are taking the long road. Perhaps this trial isn't Phoebe's best chance for remission - perhaps waiting will bring us more options and better opportunities. We can only hope that eventually we will get there. And get there we will.
And then there is Phoebe ... it would seem that no one has told her that the cancer is back. She is thriving, growing, laughing and smiling. She is even getting teeth. Two new teeth finally poked through yesterday. Her white cell count was 17 today, so it is on its way down again. In addition to this, today was our first clinic visit in over 3 weeks that Phoebe didn't receive any blood transfusions. She will probably need one tomorrow, but we were very happy to be sent home early from the clinic today. All of this being said, the fact that she has a raging, unpredictable and aggressive cancer inside of her is never far from our minds. We have no idea what it will do, how long it will stay hidden, or where it will go and that scares me to death.
And so we are taking the long road. There is a beautiful little town in Scotland, where my mother was born and where many of my family live today. It is called Rothesay and is on the Isle of Bute. To get there (and you should go) you can choose to take the short road from Glasgow to Wemyss Bay and then a large ferry that takes you directly in to town, or you can take the long road. The long road stretches along the shores of Loch Lomond, is full of curves and hills and it takes you to a tiny ferry that leads you to the edge of town. As a child I loved taking the long road. The winding road, the tiny ferry. It was wonderful. And although it took forever and often had its share of obstacles - mostly of the farming variety, it eventually led us to our chosen destination. I mention this because today when I was thinking about Phoebe's road to recovery and her many many obstacles, I simply thought - well, I guess we are taking the long road. Perhaps this trial isn't Phoebe's best chance for remission - perhaps waiting will bring us more options and better opportunities. We can only hope that eventually we will get there. And get there we will.
Friday, August 19, 2011
A long weekend
The results of Phoebe's blood tests are in and they show that she does have the CD22 expression on her Leukemia cells, so she is eligible for the clinical trial. However, we are still waiting to see if she will actually be enrolled. What makes this situation complicated and unfortunate is that the one spot left in the trial, is needed by Phoebe and one other patient. The doctors are going to discuss both patients on Monday and make a decision about who will benefit most from the treatment. I am sure that many factors are involved in their decision making process, and I know that they will choose well. Because this is a phase 1 and experimental drug, only a handful of patients can be used - I guess they want to make sure that the treatment is effective before offering it to everyone. Knowing all of this doesn't make anything easier. Somewhere in the world, there are other parents hoping for the same thing that we are hoping for, praying for a child who is also very sick and, like Phoebe, in desperate need of this treatment. Nothing about this is easy.
Our doctor has told us that if Phoebe is not chosen for the trial, there are other options for treatment and although he hopes we won't need to discuss them, he has ideas and plans for next steps. There are a few other trials that can help Phoebe but they are not available right now. We don't know how long Phoebe can wait for treatment, and we are afraid of waiting too long. Today Phoebe's blood work showed that her white blood cell count is 20. This is good news, as it is the lowest it has been since she relapsed, but it is being controlled by chemotherapy, and we were reminded today that this drug is only a temporary solution as the cancer will eventually break through its barrier. I got the impression from our doctor today that things are not as she would have expected. She commented on how "surprised" all of the doctors are at how well Phoebe is doing despite all that is going on inside of her, and how her white blood cell count is still very much under control - more than 3 weeks after her relapse. Although we are happy that Phoebe's white cell count is lower, we are aware of how terribly fragile this situation is and are anxious to start the next phase of treatment. Whatever that may be.
This weekend will be the first in 3 weeks that we don't have any plans to visit CHEO for blood work and transfusions. Phoebe had a platelet and a red blood cell transfusion today. We will enjoy our time together at home, but we will also be anxiously awaiting Monday's news. It will be a long weekend.
Thursday, August 18, 2011
Options ...
Back from a quick trip to Toronto. Phoebe, Jon and I arrived at the clinic at Sick Kids yesterday morning for blood tests and a meeting with the doctor about the clinical trial. The blood tests are looking to see if Phoebe has a particular expression on her Leukemia cells, because it is this expression that the study drugs targets. We will have the results of the blood test on Friday, at which point we can continue with more testing and begin the process of making sure that Phoebe is ready for the trial. This will include more blood, bone marrow and spinal fluid tests, and tests of her heart, organs and eyes. This is to give the doctors a baseline, an idea of how well Phoebe is and also to further ensure that she is eligible for the trial.
The meeting yesterday was different. It was the first meeting since Phoebe's relapse that we left feeling hopeful. While we are very aware of how aggressive Phoebe's cancer is and how difficult it may be to treat and cure, we talked at length with this doctor about options. About trials and new drugs that are promising and on their way to Canada, things that can help Phoebe once she is in remission. Options. The trial that we are hoping she is eligible for he explained, has shown complete response in some patients. This means that after treatment with this particular drug, some patients were seen to be in remission. If Phoebe is eligible for this trial, it will be a first step towards further treatment, not a cure. If it works to get Phoebe successfully in to remission, that will open more doors for treatment options that will hopefully lead us to a cure.
Although the meeting was hopeful and the doctor we spoke with is optimistic, we are still left waiting. The earliest that Phoebe can be enrolled in the trial is next Monday. The dose of the chemotherapy she takes to keep the Leukemia under control was changed last week and as part of the study criteria, we need to wait 2 weeks from the last dose change. In addition to this, there is one single spot left in this particular trial, and that spot can be taken at any moment.
Right now it feels like we are in a race against time. A race that also has many, many road blocks and hills that we must climb in order to get to the finish line. Phoebe's white blood cell count has to remain under 50 in order to be eligible for the trial. It was 36 yesterday and we have eleven long days of waiting ahead of us. We are hoping that the results of the blood tests show that she is eligible but also that her white count continues to be controlled by the chemotherapy that she is taking. In the event that Phoebe is not eligible for the trial, we will sit down with our doctors to discuss further options, a different trial, or treatment for Phoebe, but for now we will focus on the task at hand. That is enjoying each day that we have with Phoebe, whether it be in the hospital or at home. Surrounding her with love, hope, strength and laughter.
The meeting yesterday was different. It was the first meeting since Phoebe's relapse that we left feeling hopeful. While we are very aware of how aggressive Phoebe's cancer is and how difficult it may be to treat and cure, we talked at length with this doctor about options. About trials and new drugs that are promising and on their way to Canada, things that can help Phoebe once she is in remission. Options. The trial that we are hoping she is eligible for he explained, has shown complete response in some patients. This means that after treatment with this particular drug, some patients were seen to be in remission. If Phoebe is eligible for this trial, it will be a first step towards further treatment, not a cure. If it works to get Phoebe successfully in to remission, that will open more doors for treatment options that will hopefully lead us to a cure.
Although the meeting was hopeful and the doctor we spoke with is optimistic, we are still left waiting. The earliest that Phoebe can be enrolled in the trial is next Monday. The dose of the chemotherapy she takes to keep the Leukemia under control was changed last week and as part of the study criteria, we need to wait 2 weeks from the last dose change. In addition to this, there is one single spot left in this particular trial, and that spot can be taken at any moment.
Right now it feels like we are in a race against time. A race that also has many, many road blocks and hills that we must climb in order to get to the finish line. Phoebe's white blood cell count has to remain under 50 in order to be eligible for the trial. It was 36 yesterday and we have eleven long days of waiting ahead of us. We are hoping that the results of the blood tests show that she is eligible but also that her white count continues to be controlled by the chemotherapy that she is taking. In the event that Phoebe is not eligible for the trial, we will sit down with our doctors to discuss further options, a different trial, or treatment for Phoebe, but for now we will focus on the task at hand. That is enjoying each day that we have with Phoebe, whether it be in the hospital or at home. Surrounding her with love, hope, strength and laughter.
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