Phoebe's obituary - something I never imagined I would ever write. In fact, most of the things we have been doing lately are things no parent should ever have to do. Each day we wake up without our sweet Phoebe is harder than the last. We miss her so much.

Please see the link below for Phoebe's obituary and details on how to make a donation to infant leukemia research at St.Jude in her memory. 

http://beechwood.permavita.com/m/PhoebeRoseDoull-Hoffman

Celebration of Life

We are very touched by the many messages and comments we have received - it is wonderful to know how loved our sweet Phoebe is. And how she touched your lives. We wish we could respond to each of you and thank you personally.  

It's so hard to believe that Phoebe is gone and we just miss her so much. I miss her little voice telling us all what to do. I miss holding her. I miss her joy. I miss everything about her. I keep thinking I am going to wake up from this nightmare, but instead I just feel lost. We all do. Mae cries for her sister and best friend and it breaks my heart. 

We are leaving Memphis tomorrow after 16 months away from home. We wish so much that things were different and our Phoebe was coming with us - healthy and with the cure she so deserved. Instead she is coming home with us so we can put her to rest. We miss her so much. 

The celebration of Phoebe's life will be held on Sunday November 29th at the Beechwood Funeral Home, located at 280 Beechwood Avenue in Ottawa. We will update soon with more details. 

A special thank-you to Ella Berman for writing and singing this beautiful song for Phoebe. I know that Phoebe would have loved this and when I close my eyes I imagine her singing along. https://m.youtube.com/watch?feature=youtu.be&v=1OAhx2alPXc

Our sweet Phoebe Rose took her last breath this morning in the ICU at St.Jude. We never made it home with her, but in many ways her beautiful spirit will always be home with us. We are broken, so broken, and just miss her so much. We Love you Phoebe Rose.

Home

We are making plans to come home and are transferring care to CHEO's ICU. Phoebe is very sick with infections, but we hope and plan, as long as it will help Phoebe, to continue treatment for these at home. There is no cure for refractory infantile leukemia and we have tried every single thing we can. 

St.Jude, being the incredible and wonderful place that it is, is going to great lengths to get Phoebe home to Ottawa. I don't know if this would be possible anywhere else. They are arranging a medical transport flight, and because of the extenuating circumstances, they may allow both Jon and I to travel with Phoebe. We could be leaving as early as tomorrow. 

The people who have cared for Phoebe throughout this journey are some of the most beautiful people I have ever met. They have done so much to help Phoebe, but also to help our family, and even though we are going home without the cure we so hoped for, we will always be grateful for this beautiful place and their mission. St.Jude has given us time and will always hold a special place in our hearts. 

We are still hopeful, but our hope has changed. With everything we have, we hoped for a forever cure and to bring home a healthy child, but now we hope for time. We hope for healing. We hope for smiles, good days, and strength - for Phoebe and all of us. We hope Mae and Phoebe understand. 

Phoebe is still sick with many infections, she is requiring high flow oxygen to help her breathe, but each day she spends some time playing, watching movies, and telling us all what to do. At Phoebe's request, we have started playing freeze dance at least once a day. Phoebe plays and pauses the music, we dance, and she smiles. I would do anything for that smile.

We are devastated. There are no words that even come close to expressing how painful and heart shattering this is. How hard it is to watch Phoebe suffer and fight to breathe as we have been doing. We wish things were different. We wish there was something, anything, we could do that would guarantee healing and we will continue to do all that we can. All that we can right now means bringing Phoebe home where she can be surrounded by love. It means holding her, loving her and supporting her through whatever may come. We just love her so much. 

Thank-you all for loving and praying for Phoebe. Please pray for a safe journey home and keep our sweet girl in your thoughts. 

Saturday, November 14th 

Thank-you all for the love and prayers and messages of support - I believe Phoebe can feel the love and that means the world to me. I was going to wait to update because things are so unpredictable, but I know that you love and worry about Phoebe too.

Last night was so hard and very little sleep was had. We spent the night trying to help Phoebe breathe better. Listening to her grunt and struggle and try to get comfortable. She was placed on high flow oxygen via a nasal cannula - this took some convincing and negotiating as she didn't want something in her nose, but she finally agreed. It took some time for her to settle and today has been very up and down, but overall her breathing has improved although it is still fast. Her heart rate and blood pressure have come down (both were high), and she has managed to maintain her oxygen saturation - although it's at a high setting.

The colitis appears to be a bit better and Phoebe's belly is less distended, but her pancreatic enzymes are more elevated today. We hope they show some improvement tomorrow.

There are blasts in Phoebe's blood, but the doctors are not convinced it is disease progression. They think that her body could be in shock and her bone marrow could be producing everything and anything it can. Right now leukemia is probably the farthest thing on our mind - there are just too many life threatening issues at play.

We are clinging to hope. Phoebe is more comfortable. She slept most of the day, but when she was up she played on the iPad with Mae. She hasn't played with Mae in weeks and her big sister really needed this. We are grateful for each day, each smile, each tiny victory, every moment.

Phoebe had a very hard day today. We all did. On top of everything, she also has pancreatitis and colitis. Her belly is very swollen and it's affecting her breathing - making her work very hard, too hard, to breathe.  It is all just too much. We had some very difficult talks in the ICU tonight and there really aren't any words to describe this. Our hearts are breaking and we are clinging with all that we have to hope. Even if it is just hope for relief for our sweet girl. We need prayers, all of your positive energy, and love.

ICU

Phoebe is in the ICU. We have been here since Tuesday afternoon when she started having difficulty breathing. The rapid response team was called and within minutes, Phoebe's room on the leukemia ward was full of people trying to help. I can't say enough about the amazing people who work here.

The ICU doctors told us Phoebe was in respiratory failure and once we arrived in the ICU they quickly put her on a biPAP machine to help her breathing. The mask covered her entire face and she screamed at us to help her. We stood by completely helpless, only able to offer our voices to comfort her. When we tried to explain that the mask will help and it will be okay, she screamed "it's not okay". That is Phoebe's standard reply to "it will be okay", and she's right. None of this is okay. 

Thankfully her breathing improved with the help of steroids and the biPAP machine - she tolerated it for about ten hours before she pulled it off her face and demanded she get a break. She is still requiring oxygen all the time via a regular mask and she recently tested positive for adenovirus in her blood, stool, and sinuses - it is also probably in her lungs.

The best and really the only way to completely get rid of any virus is with an immune system, something Phoebe doesn't have. There is a drug available to treat adenovirus, but it is very toxic and hard on the kidneys. We were hoping to use an investigational drug, but it is only available on a compassionate care basis to kids who are unable to receive the first - for example if their kidneys are failing. We are trying all we can to get the less toxic investigational drug, but because it would take at least a week even if it were available and Phoebe is very sick with adenovirus now, we are giving one dose of the available drug, holding our breath, and hoping it helps. 

There are so many obstacles and challenges for Phoebe to overcome that it is overwhelming and really just devastating. Each time we move forward, we take a step back. Phoebe is strong and brave and she fights so hard, but she is also five years old and deserves so much more than this. Despite all that is going on, when Phoebe isn't telling her nurses and doctors exactly what she thinks - she smiles. She laughs at her Daddy's jokes, she paints and does crafts. She listens to her favourite music and reminds Mae to do her homework. She keeps all of us on our toes and reminds us what is important. 

We are holding on and hopeful for brighter days. We hope to get out of the ICU. We hope to get out of the hospital. We hope for a better quality of life for Phoebe, and we pray for healing and relief from all of this. One day at a time. 

One thing is for certain, Phoebe can feel the love and prayers and this brings us so much comfort. Thank-you all for keeping Phoebe in your thoughts and prayers and for the beautiful messages of love and support. 

Fevers

We are in patient at St.Jude and have been here since late Saturday night. Phoebe has been having very high and persistent fevers. She had one positive blood culture, but all have since been negative. She is still requiring oxygen and at times her breathing is very labored. Although there are many possibilities, it is not clear exactly what is causing these fevers. Phoebe is struggling with many things and this is so hard. 

Writing down everything that is going wrong lately is incredibly difficult and it takes me places that I just don't want to go. 

Phoebe has blasts in her peripheral blood. Yesterday there was 1% and today it is 9. They are thought to be leukemia. 

Receiving blood products is becoming increasingly more complicated and Phoebe seems to react to everything with fevers, chills, and panic. Considering that leukemia crowds out normal and healthy cells, we rely on blood donors and Phoebe needs to be able to receive blood and platelet transfusions to live. 

When Phoebe's platelets drop below 75,000, which in the world of leukemia is actually not that low, she develops nose bleeds that just won't stop. Imagine your child's nose bleeding and not being able to stop it. Pillows, sheets, tissues, soaked with blood. Wise beyond her years, Phoebe will demand platelets, she will ask for decongestant nasal spray, she will lay tissues on her pillow because the sight of blood staining it and her sheets scares her, and at 5 years old, she knows too much. 

As the days with fevers and everything continue, our hope is wavering. Our hope for a cure has shifted to hope for time, relief, peace and healing. Sometimes it seems as if we are on an island - alone in our belief and hope for healing. We are hanging on with all that we have and really just trying to get back to solid ground. To be able to go for a walk outside with Phoebe, without the worry of oxygen, fevers and nose bleeds, is something we long for. 

Count your blessings, friends, and enjoy your kids and loved ones and the many, many gifts they bring. 

We are so grateful for the support, messages, love and prayers sent our way. I often imagine all of this love wrapped around Phoebe, protecting her from the scary things that tend to fill her days. 

This Sunday November 15th in Ottawa, our friend and very talented photographer, Anne-Marie Bouchard, is holding 'Photos for Phoebe' - this is the third year this event has happened and we are so thankful. It is a wonderful opportunity to get beautiful photos of your kids, yourself, friends, or loved ones in time for the holidays. For more information, please email Anne-Marie at anne@ambphoto.com or visit http://ambphoto.com/blog/2015/11/09/photos-for-phoebe-year-3/

Phoebe has been doing pretty well. She is getting stronger and is awake and more alert during the day. She often wakes up in the wee hours of the morning too - asking to watch a movie with popcorn - all good signs that she is feeling better. She is still needing oxygen, but her breathing has improved and she hasn't had any fevers.

Tomorrow Jon will go to the blood donor room to harvest granulocytes for Phoebe. My run of 29 granulocyte donations has come to an end and it's bittersweet. I would have continued to donate for Phoebe as long as I could, but each week I gave I was a bit more tired with lower iron. I still would have kept going, but when they retested Phoebe's blood for antibodies, it showed they were still present and the signal was stronger. This suggests that Phoebe is making these antibodies which suggests that somehow, some of her own cells have managed to recover after two transplants and everything else. Her body is rejecting my red blood cells or any A+ red blood cells, which means she is transfusion dependent because any red cells that her transplanted cells (my cells) make, she essentially destroys. It also means that she can't receive my granulocytes because they also contain red cells. All of this is complicated and very rare and we were always told it was impossible for any of Phoebe's original healthy cells to survive. I know this might sound positive, but because Phoebe's cells are what originally and continue to make leukemia - even if what is there now is healthy, it is not really a good thing.

Jon's granulocytes will go to work on the infections Phoebe has, and this is good and needed, but giving them and this latest news complicates things for any next steps that we were holding on to. My frozen stem cells that we were hoping to give to help give Phoebe a boost also contain red blood cells, so they would also be rejected unless Phoebe stops making these antibodies. There is also a chance that she could start to reject Jon's cells too.

For now, we will focus on the progress Phoebe has made and continues to make. She is strong and feisty and happy to be feeling better. She is excited to be getting her Daddy's cells and we know they will work their magic.

There was a miscommunication about the CT results - it seems that although some things look better, there are new areas of concern in the lungs that explain Phoebe's need for oxygen. Phoebe is now requiring oxygen 24 hours a day, so we have a machine at home and portable tanks in the car. We tried to do some trick or treating last night, mostly for Mae as Phoebe is not a fan of Hallowe'en - she will tell you that "candy is bad for you", if you ask her what she thinks, but her breathing was just too labored and it was too difficult to make our way with the tanks that we gave up and went home after a few houses. It was sad and hard - remembering carefree Hallowe'en nights in the past, but we tried and Mae smiled, so it was worth it. 

We are still out patient, but only because St.Jude places a lot of faith and trust in parent's ability to care for their child and they know that the best place for Phoebe is at home with us. We are still at St.Jude daily, but when we are at home we are running IV antibiotics every eight hours, giving Phoebe her daily oral medications, switching out and setting up IV nutrition, monitoring oxygen saturation levels and making sure Phoebe is getting enough oxygen, doing dressing changes and the maintainance of Phoebe's central line, taking Phoebe's temperature, trying to get her to eat and drink which means frequent trips to the store to get anything her little heart desires, all while trying to prevent and control the nose bleeds that seem to be chronic right now, and homeschooling Mae. I am thankful there are two of us. It is absolutely exhausting and some nights we get very little sleep, but Phoebe is happiest at home, Mae is happiest when Phoebe is home, and we will do anything to make them smile, and so we do. 

In other news, although I donated granulocytes to Phoebe for I think the 30th time this week - a process that takes two and a half hours and is getting more exhausting as the weeks pass, Phoebe was not able to receive them. Each week her blood is checked to make sure that she will not reject the granulocytes and each week it has been fine. This week however, they discovered that Phoebe somehow developed antibodies to my granulocytes and if we were to give them they would cause her to be very sick as her body would reject them. The granulocytes were thrown out and we plan to test again on Wednesday because Phoebe is still neutropenic and she needs these cells to fight the many infections she has. I don't know where we go from here if she is unable to receive them. I also don't understand why she is suddenly rejecting them and it is very complicated. Phoebe's doctor explained two possibilities - one is that Phoebe picked up antibodies from an infusion of IVIG in which case it is temporary, but the other is that Phoebe's own cells have somehow managed to mature lymphocytes. The latter would be very rare and actually kind of crazy because after two transplants and all that Phoebe's body has been through it is very unlikely and almost impossible for any of her healthy cells to survive. 

We will know more next week and until then will continue to put one foot in front of the other, breathe in and out, hug our girls tight, laugh as often as possible, and hope with all we have for healing. 

Thank-you all for keeping Phoebe in your thoughts and prayers.