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.

Monday, March 23, 2015

Lead the way, Phoebe



We are still here. 

If we look at Phoebe instead of looking at her blood and bone marrow results, we are comforted and encouraged. She looks good and appears to be feeling great. She is eating well, growing taller, gaining weight, she is playing, laughing and she seems to only be getting better and stronger. She is the first to wake up each morning and when she does, she often tells us that she is "starving for breakfast". Her doctors often comment on her energy and overall wellness. It is just unbelievable that she can be so well, yet so sick. But, she is.

Phoebe had bone marrow tests and a CT scan of her lungs on Friday. The CT scan shows that her lungs look much improved. This is good news and allows us to continue treatment for the beast that is leukemia. Phoebe's bone marrow is still filled with about 70% leukemia cells. Her bone marrow chimerism results are worse with just 8% donor cells and 92% leukemia/Phoebe's cells. She is completely neutropenic and although there is no sign of leukemia in her blood, she is requiring weekly blood and platelet transfusions. With only 8% donor cells, her body is just not making healthy red blood cells, white blood cells and platelets. We need these things to survive and so we are eternally grateful to those of you out there in the world who donate blood and platelets. 

Phoebe's results do not match the girl who we watch running around the apartment asking for a second helping of Shephards pie. For this - for Phoebe's seemingly unbreakable spirit, we are so thankful. 

Because these results show very little improvement, today we signed more consent forms. Complete with lists and lists of possible side effects that are similar to the possible side effects that we have read about for the past four years, these consents are for a new study treatment that will start later this week. Tomorrow Phoebe will have a lumbar puncture with chemo and then on Thursday she will start an investigational drug. This drug is new in the treatment of pediatric leukemias, it is not yet approved by the FDA, but there have been some patients who have responded to it completely. It is also well tolerated and unlikely to make Phoebe sick. It is, like all of the other treatments that have given Phoebe a chance since 2011, not available in Canada. We are grateful for this option, for all of the staff at St.Jude,  and for doctors who continue to try very hard for Phoebe. We don't talk about odds anymore - we have been told enough times since the first relapse in 2011 that Phoebe's chances for a cancer free future are small, but we see her and we know that she is mighty. She is not a statistic, rather she is an almost five year old little girl who has spent most of her life overcoming odds and showing us that anything is possible. 

Our long term goal is still to make it to transplant as this is the only curative option that Phoebe has left. It is, like Phoebe, our small but mighty hope. The transplant protocol that remains Phoebe's only option is still temporarily on hold and going to transplant with a heavy burden of disease is not ideal, so we are choosing to look at this time as a blessing. Phoebe needs this time to heal and because this is true, it is what is meant to be. We have to believe that eventually things will fall into place. 

While all of this is going on and while the doctors and researchers are doing their thing, we will continue to do ours. We will surround Phoebe with love and support. We will move forward with hope. We will do our best to fill and support her body with good and nutritious food, we will watch her continue to grow and thrive and we will always believe in her. We will live and enjoy each and every moment. Even the moments that are spent in tiny hospital rooms are precious. Time, no matter how it is spent, is a gift. 

All of this is still completely and overwhelmingly terrifying and devastating and honestly, Phoebe and Mae's spirit and determination is what keeps us going. Mae often reminds us of how far Phoebe has come. "Remember the time when Phoebe was in the hospital and would only sleep? Look at all she does now". She also is the first to remind Phoebe to work on strengthening her left side. "Phoebe use your lefty - remember that lefty is a good helper". As for Phoebe, each morning she wakes up (first), and greets the day with a smile. She doesn't complain if her day includes a trip to the hospital. She takes it all in stride and she enjoys life. She is amazing and she is leading the way. 

Please keep sweet Phoebe in your thoughts and prayers. 

"We must accept finite disappointment but never lose infinite hope". Martin Luther King Jr.

HOPE 








6 comments:

  1. Praying Phoebe,,,, Mimi would like to see you next week!! We are back for our scans and would love to meet and play with you....

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  2. Small, but mighty. HOPE ~ at the beginning of my husband's cancer journey someone, a stranger, told us to never give up HOPE and to always BELIEVE, so that is my prayer for your sweet girl, Phoebe, praying for her miracle, and ever hopeful for a cure, so that she can live the life that she so deserves. Sending Phoebe & your family blessings, love & hugs from the Henry family <3

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  3. Sending you guys so much love. We don't know each other, but we have a handful of mutual friends. I ask about Phoebe and always like getting an update. You're one hell of a strong family. I'm not at all surprised that you've raised such a strong little girl. She's mighty, indeed. Hang in there. xo

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  4. You are all mighty and blessed to have each other. You are all in our thoughts.
    Lee and Dennis

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