Yesterday, Phoebe received her very last dose of chemotherapy, hopefully forever. It is high dose cyclophosphamide and its job is to kill some of the many T-cells as a way to prevent graft vs. host disease and also to give Phoebe's body, which has been deep in battle with these cells, a bit of a break. These cells will eventually come back once Phoebe engrafts and her bone marrow starts to make new and healthy white blood cells.
Because of how Phoebe's first transplant went, it is hard not to write "hopefully forever" when imagining that this is the last dose of chemo. The memory of Phoebe's relapse is never far from my mind, and while it is something that we try not to focus on, its memory serves as a constant reminder of how precious and wonderful time is. We unfortunately don't know what the future holds but we hold on to the hope that this will be the last time that chemotherapy will run through Phoebe's veins.
Phoebe is doing well. Her blood work, liver enzymes, kidney function and all of the other things that transplant affects look good. The doctors are slowly starting to feed her again, through her ng tube. Today she will receive 10mls of formula every hour. Not a lot, but it's a start. Her feeds have been on hold since her transplant because there is a worry that she will become nauseous and vomit and possibly aspirate feed into her lungs. There is a risk of developing pneumonia if this happens and that is a risk that no one wants to take. So we are starting slow.
Phoebe is sleeping a lot and when she is awake she is very tired. She still plays and laughs and when she is mad she shouts and makes herself heard, but the spunky and feisty Phoebe is not quite back yet. That too will take some time. And so it is a good thing that we have time, a lot of it, to wait for Phoebe to get better. We believe in a cancer free future for Phoebe and we will wait and fight for as long as we have to to get there.
To all of you who have believed and hoped with us, kept Phoebe in your thoughts and prayers and close to your hearts. Thank-you. There are no words to express just how much this means to us.
Tuesday, December 6, 2011
Saturday, December 3, 2011
Small victories
Day +2 today. Counting up and away from all things cancer. Phoebe is having a better day. She had a good and restful sleep last night, interupted only once by a very high temperature. Her oxygen levels remained normal, her heartrate when she wasn't febrile was normal, and she even gave her daddy a few laughs. Yesterday at this time, the doctors were planning to move Phoebe to the ICU, thankfully she turned a corner before that became a reality. We have come a long way in a short time.
The next few days and weeks will be filled with much of the same waiting and watching that we have become accustomed to. Waiting for signs of engraftment - of Phoebe's body's ability to make white blood cells, and watching for side effects from the transplant. Because Phoebe is more stable today, the doctors are starting to wean her off of the steroids in the hopes that her body will slowly adjust. This morning they commented that they are happy with how she is doing, and they are hopeful. Phoebe's last pre-transplant chimerism test showed 100% donor cells, so she is still in a deep remission. The stem cells that she received also contained a lot of T-cells, our nurse said that it is one of the largest amounts they have given, which will hopefully help to rid her body of any stubborn Leukemia cells.
Phoebe is tired today and resting a lot. Her body has been through so much and she is doing exactly what she needs to do to get better. We will continue to move forward and to focus on the small victories that each day brings. We are not in the ICU, Phoebe is stable, she is no longer on the monitor, and everyday that passes is another day that she is closer to being cured.
The next few days and weeks will be filled with much of the same waiting and watching that we have become accustomed to. Waiting for signs of engraftment - of Phoebe's body's ability to make white blood cells, and watching for side effects from the transplant. Because Phoebe is more stable today, the doctors are starting to wean her off of the steroids in the hopes that her body will slowly adjust. This morning they commented that they are happy with how she is doing, and they are hopeful. Phoebe's last pre-transplant chimerism test showed 100% donor cells, so she is still in a deep remission. The stem cells that she received also contained a lot of T-cells, our nurse said that it is one of the largest amounts they have given, which will hopefully help to rid her body of any stubborn Leukemia cells.
Phoebe is tired today and resting a lot. Her body has been through so much and she is doing exactly what she needs to do to get better. We will continue to move forward and to focus on the small victories that each day brings. We are not in the ICU, Phoebe is stable, she is no longer on the monitor, and everyday that passes is another day that she is closer to being cured.
Friday, December 2, 2011
Day +1
Phoebe received the first bag of stem cells last night. Her temperature slowly climbed as they were going in, and reached 40.3 at its highest. Tylenol wasn't successful in bringing it down, and so today she has a cooling blanket on her while she sleeps. The doctors have decided not to give the second bag of stem cells, instead they are freezing them in case Phoebe needs them in the future. They say that the first bag contained a lot of cells, enough for the transplant to be successful. and that giving her the second day of cells would cause more harm than good. Phoebe's little body needs to start healing now.
Yesterday morning Phoebe was a picture of health. She had learned to get into a sitting position from laying down which was making diaper changes interesting, she was cruising around her crib, laughing, smiling, playing. She was wonderful, joyous Phoebe Rose. This morning her heart was beating at 215 beats per minute, her temperature was high, and at times her oxygen levels were dropping. The overnight change in her condition was incredibly difficult to see, but we were told that it is to be expected. The stem cells that she received were unfiltered, so they contained a lot of T-cells. These are a white blood cell that normally fight infection, and many of them in an unfamiliar body is wreaking some havoc - while this is frightening to see the hope is that this surge of immune system power houses is also wreaking havoc on any leftover Leukemia. On day +4 Phoebe will receive her very last dose of chemo (hopefully forever), and its job is to wipe out some of the T-cells and to ease the stress on Phoebe's body.
Right now Phoebe is resting. She has been sleeping most of the day. Her heart rate has come down a bit and her oxygen levels are normal. She is connected to the monitor and covered with a giant cooling blanket. The doctors have started her on more broad spectrum antibiotics just in case the fevers are not related to transplant, and they are continuing a steroid to counteract some of the reactions that she is having. They are doing everything possible to keep Phoebe safe and this eases some of our stress and worry.
Tomorrow is a new day.
Yesterday morning Phoebe was a picture of health. She had learned to get into a sitting position from laying down which was making diaper changes interesting, she was cruising around her crib, laughing, smiling, playing. She was wonderful, joyous Phoebe Rose. This morning her heart was beating at 215 beats per minute, her temperature was high, and at times her oxygen levels were dropping. The overnight change in her condition was incredibly difficult to see, but we were told that it is to be expected. The stem cells that she received were unfiltered, so they contained a lot of T-cells. These are a white blood cell that normally fight infection, and many of them in an unfamiliar body is wreaking some havoc - while this is frightening to see the hope is that this surge of immune system power houses is also wreaking havoc on any leftover Leukemia. On day +4 Phoebe will receive her very last dose of chemo (hopefully forever), and its job is to wipe out some of the T-cells and to ease the stress on Phoebe's body.
Right now Phoebe is resting. She has been sleeping most of the day. Her heart rate has come down a bit and her oxygen levels are normal. She is connected to the monitor and covered with a giant cooling blanket. The doctors have started her on more broad spectrum antibiotics just in case the fevers are not related to transplant, and they are continuing a steroid to counteract some of the reactions that she is having. They are doing everything possible to keep Phoebe safe and this eases some of our stress and worry.
Tomorrow is a new day.
Wednesday, November 30, 2011
Day -1
Day -1 today and Phoebe is doing very well. This morning during her visit with her occupational therapist she pulled herself up in her crib and shuffled from one side to the other. This is amazing considering the fact that when we arrived at St. Jude two months ago she refused to stand. Now she is standing and moving and shaking and we are so proud of her.
Today she had her last infusion of ATG and tomorrow and Friday from 9am to 3pm my stem cells will be harvested, taken from me through an IV line in my arm, and Phoebe will get them soon after. I am anxious, excited and nervous, similar to how I felt with Phoebe's first transplant only slightly more nervous because it is my cells that have a big job to do this time.
In the meantime we are loving the joy and happiness that Phoebe and Mae bring to each day. Their visits in the fish bowl attract the attention of many nurses as their smiles and laughter is contagious and so wonderful. A reunion, when it happens will be amazing. Today our doctor planted an unexpected but wonderful seed in my mind when he mentioned the words "home" and "Christmas" in the same sentence. Perhaps a reunion will come sooner than we are expecting.
Anything is possible.
Today she had her last infusion of ATG and tomorrow and Friday from 9am to 3pm my stem cells will be harvested, taken from me through an IV line in my arm, and Phoebe will get them soon after. I am anxious, excited and nervous, similar to how I felt with Phoebe's first transplant only slightly more nervous because it is my cells that have a big job to do this time.
In the meantime we are loving the joy and happiness that Phoebe and Mae bring to each day. Their visits in the fish bowl attract the attention of many nurses as their smiles and laughter is contagious and so wonderful. A reunion, when it happens will be amazing. Today our doctor planted an unexpected but wonderful seed in my mind when he mentioned the words "home" and "Christmas" in the same sentence. Perhaps a reunion will come sooner than we are expecting.
Anything is possible.
Sunday, November 27, 2011
Day - 4
Today, my part of Phoebe's stem cell transplant began. I received my first injections of G-CSF (granulocyte-colony-stimulating-factor). It is a drug that will stimulate my bone marrow to make white blood cells, causing them to spill out into my blood so that the stem cells for Phoebe's transplant can be taken directly from my vein. I will have 10 injections over the next five days and I was told to expect a lot of aches and pains, that I will probably need something to help me get through, but so far everything is good. The actual injection itself is a bit painful, similar to a very long bee sting as the drug burns while it is being pushed in, but i'm sure it is tiny in comparison to the amount of pain and suffering that Phoebe has endured over the past 13 months.
To date Phoebe has received over 800 injections. Two days after her diagnosis, a standard transfusion of platelets turned catastrophic when she was transfused with 10 times the amount of platelets that she needed. Platelets are the part of our blood that helps it to clot and this overdose resulted in a giant clot developing where a femoral line had just been painstakingly put in. It caused her tiny leg to turn dark purple and to swell to many times its normal size. I remember worrying that she would lose her leg but being too afraid to ask if that would happen. At the time, being so close to diagnosis, Phoebe's blood was already thick due to her high white cell count and this medical error could have cost her her life. One nurse commented after this happened that with the high white count, "Phoebe's blood was like porridge, and now with these extra platelets, it is like mud". Thankfully it resulted only in moments of incredible and unforgettable panic, anger, frustration and fear, and twice daily injections of blood thinners that she still receives today. In the future, once her central line is removed and the risk for clotting lowers, Phoebe will be able to stop taking the blood thinners, but for now they serve as a constant reminder of our job as Phoebe's voice and advocate.
I wasn't going to tell this part of Phoebe's story, as our goal throughout has been to move forward, to focus on the future and to move past any obstacles that we have faced. We are still moving forward, but in this case the past has greatly shaped the present. While I was sitting in the chair today, feeling the pain from the injection, I thought of Phoebe and all of these pokes. To do her story justice this part has to be told. It has shaped us and how we have handled much of this journey. It taught us to question everything, to forgive, to do our best to make sure that we are aware of everything that happens each day, and it helped me to understand and realize that mistakes can be made, even in hospitals.
Now for today and for moving on and forward. Today is day -4 and Phoebe continues to do well. She had a wonderful day yesterday, full of playtime, her favourite baby Einstein videos, a visit to the playroom, and a few laps around the transplant unit. Today and for the next 3 days she will receive a new drug. It is not a chemotherapy but works in similar way to weaken Phoebe's immune system and prepare her body to accept the new cells. It runs over 6 hours each day and because there is an increased risk of an allergic reaction, Phoebe has to be connected to the monitor for its duration. It is called Anti-thymocyte Globulin and is a rabbit antibody. Again, it is incredible what has become normal in our lives. This drug will do what a chemotherapy would do only with less toxicity and fewer side effects - Phoebe's little body has seen enough chemotherapy for one lifetime.
To date Phoebe has received over 800 injections. Two days after her diagnosis, a standard transfusion of platelets turned catastrophic when she was transfused with 10 times the amount of platelets that she needed. Platelets are the part of our blood that helps it to clot and this overdose resulted in a giant clot developing where a femoral line had just been painstakingly put in. It caused her tiny leg to turn dark purple and to swell to many times its normal size. I remember worrying that she would lose her leg but being too afraid to ask if that would happen. At the time, being so close to diagnosis, Phoebe's blood was already thick due to her high white cell count and this medical error could have cost her her life. One nurse commented after this happened that with the high white count, "Phoebe's blood was like porridge, and now with these extra platelets, it is like mud". Thankfully it resulted only in moments of incredible and unforgettable panic, anger, frustration and fear, and twice daily injections of blood thinners that she still receives today. In the future, once her central line is removed and the risk for clotting lowers, Phoebe will be able to stop taking the blood thinners, but for now they serve as a constant reminder of our job as Phoebe's voice and advocate.
I wasn't going to tell this part of Phoebe's story, as our goal throughout has been to move forward, to focus on the future and to move past any obstacles that we have faced. We are still moving forward, but in this case the past has greatly shaped the present. While I was sitting in the chair today, feeling the pain from the injection, I thought of Phoebe and all of these pokes. To do her story justice this part has to be told. It has shaped us and how we have handled much of this journey. It taught us to question everything, to forgive, to do our best to make sure that we are aware of everything that happens each day, and it helped me to understand and realize that mistakes can be made, even in hospitals.
Now for today and for moving on and forward. Today is day -4 and Phoebe continues to do well. She had a wonderful day yesterday, full of playtime, her favourite baby Einstein videos, a visit to the playroom, and a few laps around the transplant unit. Today and for the next 3 days she will receive a new drug. It is not a chemotherapy but works in similar way to weaken Phoebe's immune system and prepare her body to accept the new cells. It runs over 6 hours each day and because there is an increased risk of an allergic reaction, Phoebe has to be connected to the monitor for its duration. It is called Anti-thymocyte Globulin and is a rabbit antibody. Again, it is incredible what has become normal in our lives. This drug will do what a chemotherapy would do only with less toxicity and fewer side effects - Phoebe's little body has seen enough chemotherapy for one lifetime.
Thursday, November 24, 2011
Day - 7
Each night before Mae goes to sleep, she makes a wish for Phoebe. She always says that she "wishes for Phoebe to come home" and recently she has added, "for Phoebe to get better and better" to her wish. Now when she wakes up in the morning she asks, "is Phoebe coming home today?". It is enough to slowly break my heart because each morning since Phoebe was admitted, Jon or I have had to say no, Phoebe is not coming home today. One day, she will be home. Mae misses her baby sister and also often comments on how much Phoebe loves her. She will say "Phoebe loves me the best", which is probably true. I look forward to the day when they can be reunited, and we are hopeful that this long hospital stay is our last. That these next weeks are the last weeks that I will have to say - no Mae, you can't see your sister today.
It is day -7 and all is well. As I write this, a sleeping Phoebe is receiving the second of six infusions of chemotherapy for today. I can't help but think how "normal" all of this has become. That to watch Phoebe receive so much chemotherapy no longer makes me anxious and worried - it is just a step on our road towards the cure. That is all.
As for Phoebe, she is happy, playful and active. Today for the first time ever, she managed to pull herself up to her activity table. She has been handling her feeds well and has even eaten a few crackers. This is a good sign that she is still feeling well and I am relieved. I worry often that all of this is too much for Phoebe, that being back in the hospital would cause her to be sad and depressed, and so I am happy to see that although i'm sure she is missing Mae and life at home, she is still doing her thing. Joyful Phoebe Rose.
The next seven days will bring much of the same - chemotherapy, visits with Mae in the fishbowl, and juggling life back and forth between the hospital and "home". We are hopeful that we will continue moving along on this very smooth path ... we are almost there.
It is day -7 and all is well. As I write this, a sleeping Phoebe is receiving the second of six infusions of chemotherapy for today. I can't help but think how "normal" all of this has become. That to watch Phoebe receive so much chemotherapy no longer makes me anxious and worried - it is just a step on our road towards the cure. That is all.
As for Phoebe, she is happy, playful and active. Today for the first time ever, she managed to pull herself up to her activity table. She has been handling her feeds well and has even eaten a few crackers. This is a good sign that she is still feeling well and I am relieved. I worry often that all of this is too much for Phoebe, that being back in the hospital would cause her to be sad and depressed, and so I am happy to see that although i'm sure she is missing Mae and life at home, she is still doing her thing. Joyful Phoebe Rose.
The next seven days will bring much of the same - chemotherapy, visits with Mae in the fishbowl, and juggling life back and forth between the hospital and "home". We are hopeful that we will continue moving along on this very smooth path ... we are almost there.
Tuesday, November 22, 2011
Welcome Back
The whiteboard in Phoebe's room in the bone marrow transplant unit reads "Welcome Back!". We are back and today is day -9. In the world of transplants, we count down to day zero, or transplant day, and then we count up. After her first transplant, Phoebe relapsed on day +76. Today none of that matters. Today we have an opportunity to start fresh. Today is day -9.
Phoebe is sleeping peacefully as I write this. She was admitted last night, and was not very happy to be back. She has had a few sad moments today and the effects of her first day of chemo seem to already be causing her some nausea, but she is slowly adjusting to hospital life. She has been smiling and playing with her nurse and showing off her latest trick of making animal sounds - her favourites being to moo like a cow and growl like a lion and we have heard a lot of those sounds today.
Over the next 9 days, Phoebe will receive at least one type of chemo daily. She will have her blood pressure and temperature measured every four hours, and she will be closely monitored. She will not be able to leave the bone marrow transplant unit and her visits with Mae will be through the glass of the fish bowl. The chemotherapy will cause her white count to drop back down or close to zero, giving her nothing to fight off infections, and making space in her bone marrow for her new cells. On day zero and day +1 (Dec. 1st and 2nd), Phoebe will receive infusions of my stem cells. And then we will wait for her new cells to engraft. We know from Phoebe's first transplant that it is the waiting that is the hardest. Waiting and hoping that these new cells, this new life will take root in Phoebe's body and start to grow healthy cancer-free cells is quite possibly one of the hardest things I have ever done ... and now we are about to do it again.
Phoebe is sleeping peacefully as I write this. She was admitted last night, and was not very happy to be back. She has had a few sad moments today and the effects of her first day of chemo seem to already be causing her some nausea, but she is slowly adjusting to hospital life. She has been smiling and playing with her nurse and showing off her latest trick of making animal sounds - her favourites being to moo like a cow and growl like a lion and we have heard a lot of those sounds today.
Over the next 9 days, Phoebe will receive at least one type of chemo daily. She will have her blood pressure and temperature measured every four hours, and she will be closely monitored. She will not be able to leave the bone marrow transplant unit and her visits with Mae will be through the glass of the fish bowl. The chemotherapy will cause her white count to drop back down or close to zero, giving her nothing to fight off infections, and making space in her bone marrow for her new cells. On day zero and day +1 (Dec. 1st and 2nd), Phoebe will receive infusions of my stem cells. And then we will wait for her new cells to engraft. We know from Phoebe's first transplant that it is the waiting that is the hardest. Waiting and hoping that these new cells, this new life will take root in Phoebe's body and start to grow healthy cancer-free cells is quite possibly one of the hardest things I have ever done ... and now we are about to do it again.
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