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.
Tuesday, December 15, 2015
Monday, December 14, 2015
Thank-you to everyone who has made a donation in memory of our sweet Phoebe Rose. Giving back to St.Jude and supporting research that will make a difference and give hope to the too many babies diagnosed with this terrible disease and their families means so much to us. We know Phoebe would want us to try to make it okay - thank-you for helping us do this.
Please consider giving a gift of hope this Christmas by making a donation. We need a cure.
Thursday, December 3, 2015
Tuesday, November 24, 2015
Friday, November 20, 2015
Wednesday, November 18, 2015
Monday, November 16, 2015
Sunday, November 15, 2015
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.
Friday, November 13, 2015
Thursday, November 12, 2015
Monday, November 9, 2015
Thursday, November 5, 2015
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.
Sunday, November 1, 2015
Wednesday, October 28, 2015
Phoebe was admitted to the hospital on Monday because her oxygen saturation was low. Her hemoglobin was also critically low and she was just not doing well. They wanted to keep a close eye on her and get her ready for her tests on Tuesday. The plan was to do a CT scan of Phoebe's lungs and sinuses, under sedation like we always do because Phoebe is afraid of the CT machine and panics when she goes near it, and a bone marrow aspirate.
Bright and early Tuesday morning, Phoebe got over her fear of the CT machine and went for her CT scan without sedation. She protested a lot, but her Daddy was able to convince her to try so she could avoid the extra sedation given she was already having issues with her breathing. She told him over and over "I'm not going to cooperate, I'm not going to stop moving, I won't stop talking", but she eventually listened to the technician and did everything she was supposed to - even the breath holds! This news shocked the many doctors, nurses and child life who have been trying to convince Phoebe to do a CT without sedation for amost a year.
Because of all the issues Phoebe has been having with her breathing, the coughing, and her oxygen saturation levels, we have been very worried about these tests and what they would show.
The CT of Phoebe's lungs is the same - nothing new, nothing worse, nothing that explains Phoebe's need for oxygen.
The CT of Phoebe's sinuses showed a mass, or drainage, or fungus, so ENT was called and they wanted to look in Phoebe's nose for fungus with a scope ... again. We didn't want to traumatize Phoebe by looking up her nose with a camera and by this point, Phoebe still had to have her bone marrow aspirate under sedation, so they agreed to wait and look while she was asleep. The ENT doctors come from another children's hospital in Memphis so that they waited and worked with Phoebe's schedule is really great. This great timing is also thanks to Jon who asked that the CT scans were read before moving forward with sedation just in case something like this came up. As it often does with Phoebe. Thankfully it worked out as it did because they found and pulled out two hard clots, one looked impossibly huge and was wrapped through the hole that Phoebe has in her septum and lodged in the back of her throat. The ENT doctor said it wouldn't have come out any other way but surgically. Never a dull moment, but this explains the cough Phoebe has had all week and why she hasn't been able to speak very well. And it is a huge relief that it's not fungus. The doctor said the tissue looked beautiful, which we kind of already knew because Phoebe had exploratory sinus surgery last month, but anything is possible.
Phoebe slept the rest of the day following this excitement and although she still needed some blow by oxygen, her breathing was back to normal. She also stopped having fevers and so she was discharged this morning and we had the rest of the day at the target house to wait for a phone call with the rest of the results.
The bone marrow results are better with the level of disease down to 50% from 75. We are relieved that things are moving in the right direction after just two doses of chemo and we will meet with Phoebe's doctor on Friday to talk about next steps - if Phoebe is able and well enough to continue this treatment.
Somewhere in all of this, Phoebe also tested positive for adenovirus - it is mild and it doesn't look like it will require treatment which is good as the drugs used are hard on the kidneys, but this could also explain some of the symptoms Phoebe has been having. There has been a lot going on, but all things are improving and we are hopeful. Always hopeful, and grateful for better news.
The best part of our day was driving home and listening to Phoebe ask for a snack and sing along to the radio again. She has been so quiet lately and it's so nice to hear her voice. She also started telling us exactly how she feels and getting mad that she needs a bath ... it's like music to my ears, her little feisty voice.
Thank-you all for keeping Phoebe in your thoughts and prayers.